Twenty-two Books on Disability

Writing on disability is like fine bone china — it demands a certain delicacy.
Many disabled writers (or those who choose to write on our behalf) collapse into fake jollity, or bathos — or employ a style that is icy, dispossessed, separated from the heart.
A worthy writer must show us the good as well as the ghastlies — infections, aging, the unexamined hostility of society — without getting maudlin, without descending into fake heroics, without the chill of unrelieved anger.
Good disabled literature should show the restraint of Ernest Hemingway, the tenderness of Mary F K Fisher, the insights of Virginia Woolf, the descriptive magic of H. G. Wells, and the mordant wit of S. J. Perelman.
Most of the titles below do not turn up in reading lists for Disability Studies, whatever the hell that’s supposed to be. In these 22 books one can find the truth of our world: the reality of the body, the wisdom of the soul — and the occasional rock-bottom despair of it all.

— L. W. Milam

The Top Ten

  • Don’t Worry, He Won’t Get Far on Foot,John Callahan (Vintage Books, 1990). This one should be at the top of all the lists. The reason: Callahan is a kick-in-the-pants — feisty, cynical, smart. Years ago, he did cartoons for a Portland weekly, entitled “The Lighter Side of Being Paralyzed for Life.” Like all funny crips, his writings and cartoons are peppered with the truth of living with a dysfunctional body 24 hours a day. Our bodies don’t go away and a writer has to interleave humor with honest grief in what is, after all, our accelerated knowledge of the human condition. My favorite quote: I felt as if a huge hand had reached down out of the heavens and placed me firmly on my butt in a wheelchair while a voice said, “Just sit there and relax for fifty years. Don’t get up, ever.” The only chance of relief from grief, from anger and from resentment I had was spiritual.
  • The Body Silent,Robert Murphy (Henry Holt, 1987). Murphy was head of the Anthropology Department at Columbia University when he developed a spinal tumor. Here we have a scientist looking at a brand new world he has been handed along with his drastically changed body. This on rage: “Quadriplegics cannot stalk off in high (or low) dudgeon, nor can they even use body language… They cannot show fear, sorrow, depression, sexuality, or anger, for this disturbs the able-bodied. The unsound of limb are permitted only to laugh.”
  • FDR’s Splendid Deception,Hugh Gallagher (Vandamere Press, 1994). Long after FDR died, people viewed him as a “recovered” cripple. The schemes used by him and his associates to disguise the true state of affairs (he was a polio paraplegic) were subtle but effective — and the public bought into it. Gallagher claims we all paid a price for his pretense, for Roosevelt’s last days were spent in deep melancholia which affected the way he ran the country and the decisions he made at the end of WWII.
  • Still Me,Christopher Reeve (Random House, 1998). I picked this one up to sneer … and came away convinced of Reeve’s honesty and genuineness. The last chapter alone is worth the price of the book: fame and public appearances and world-wide applause mixed with dysreflexia, T.E.D. hoses, pressure sores, picc lines, being dropped during transfers and near suffocations when his breathing tube falls off. He tries magic cures, has out of body experiences, and more than once damn near dies. “I’ve been told…that as time went by not only would I become more stable physically, but I would become well adjusted psychologically to my condition,” he writes. “I have found the opposite to be true… It’s still very difficult to accept the turn my life has taken, simply because of one unlucky moment.”
  • The Diving Bell and the Butterfly,Jean-Dominique Bauby (Knopf, 1997). One day Bauby woke up in a hospital with locked-in syndrome, due to which, according to the Merck Manual, “because of motor paralysis in all parts of the body [one] cannot communicate except possibly by coded eye movements.” That’s how he wrote this book–by blinking his one working eye. “My condition is monstrous, iniquitous, revolting, horrible,” he writes. Bauby died several years ago, but this is a worthy gift he left us.
  • Rescuing Jeffrey,Richard Galli (Algonquin Books of Chapel Hill, 2000). At age 17, Jeff Galli jumped into a friend’s swimming pool and broke his spine. His father, an experienced journalist and attorney, asked the doctors to remove his life support. Galli has created a spectacular piece of writing, a cliff-hanging mystery — one in which we think a murder may be going to happen. Living as a quadriplegic can be a pisser, right? And yet, to kill the kid without his knowledge or permission? It is this rank honesty that sets “Rescuing Jeffrey” apart from most books on disability’s effect on the family.
  • Moving Violations,John Hockenberry (Hyperion, 1995). It’s Hockenberry’s sometimes angry, always articulate, mostly insightful writing that transforms a specific and personal event into the experience of all of us. “My body had become a puzzle. Solving it was exhilarating beyond the simple imperatives of survival.” He claims to have escaped anger, but his description of tearing apart a New York taxi (the driver wouldn’t fold up his wheelchair) implies otherwise. The writing at times rises to high comedy, especially memories of his early days in the hospital.
  • Tumbling After,Susan Parker (Crown, 2002). Parker’s husband Ralph is a C-4 quad — bicycle accident, Berkeley, 1994. In Tumbling After, she manages to convey a fine mix of despair and hilarity and stoicism and soul-cracking honesty — so much so that when I got done I wanted to call her up just to be sure that everything was still OK, that she’s picking Ralph up after he falls and flossing his teeth and watching for bedsores and drying his eyes when he cries. After the accident she found herself in a whole new world, with a new job, and with new people — her ghetto neighbors — all of whom she describes lovingly and well.
  • The Boy and The Dog Are Sleeping,Nasdijj (Ballantine, 2003). Does a book on AIDS belong in this list? Well, AIDS is a degenerative disease operating in overdrive. Nasdijj, a 50-year-old writer, adopts the dying boy Awee, learns to laugh with him, and clean up his shit and vomit, time and time again, and again with such pain, watch him wasting away. This is not only a primer on AIDS, and what the treatment does to destroy the body while saving the body — but the mad-making world of the medical professionals, especially those who are supposed to deal with the poor, who cannot and will not properly care for those who are at high risk. Sometimes the text is so painful that one must lay it down for awhile, just to give the heart and soul a rest.
  • Learning To Fall,Philip Simmons (Bantam). Philip Simmons was diagnosed with Lou Gehrig’s disease when he was 35 years old. He works hard to find hope in his situation so the book turns into a spiritual treatise, riding on the dual questions: Why would God create such a trauma? And, how can one man deal with such a trauma without going under? For some of us, Learning to Fall has an unfortunate premise–that God sends down bad things to teach us to be good. Despite this Old Testament view, the writing is superb.

The Runners-Up

  • My Second Twenty Years,Richard P. Brickner (Basic Books, 1976). This one came out over 25 years ago and was featured on the front page of the “New York Times Book Review.” Brickner was one of the first to write about living with disability day in and day out. The book includes a list of ladies he has bedded (which can get tedious) with a studied literary style (which can get tedious). The writing is rich in detail, but there is a strange undercurrent: a proud man’s distaste for women, distaste for the lower classes; even a distaste for others with disabilities.
  • Born on the 4th of July,Ron Kovic (McGraw Hill, 1976). This one appeared the same year as Brickner’s autobiography, but the difference between the two is epic. In Kovic’s book, rage is transformed into a searing view of his world, complete with stories of his political activism. There is no relief in this steaming brew: not even a bitter humor-in-loss. He writes, “No one wants too many people to know how much of him has really died in the [Vietnam] war.”
  • A Whole New Life,Reynolds Price (Plume, 1994). This author is a darling of the New York Literary Smart Set, so some nondisabled readers may see this as the defining story of disability. Unfortunately, A Whole New Life is hack-work at its worst. When the infiltrating tumor of his spine took hold in 1984, Price reported that he was not able to find any books to help him figure out the course of his new life. In one brief paragraph, he thus kissed off Ron Kovic, Patrick Segal, Richard Brickner, Jonathan Nasaw–not to mention Margaret White, Helen Keller, and even Shakespeare’s astonishing Richard III.
  • Under the Eye of the Clock,Christopher Nolan (St. Martins 1988). Nolan was born with cerebral palsy. His writing is poetic, wry, and gentle. He tells, for example, how at age three he realized that he was different from others: “He showed [his mother] his arms, his legs, his useless body. Beckoning his tears he shook his head. Looking at his mother he blamed her, he damned her, he mouthed his cantankerous why, why, why me?” Nolan likes poetic inversions — sounding, at times, like James Joyce or Dylan Thomas — but all the while, his words are fresh and alive.
  • Falling into Life,Leonard Kriegel (North Point Press, 1991). “And I can’t take it, yet I do take it,” is his favorite quote, taken from Saul Bellow. Kriegel speaks of “the cripple [his words] who validates his life by creating a sense of selfhood out of physical pain.” The general tone of this book is one of self-loathing and fatigue, but it is of historical interest since he was one of the first to write about disability using an intellectual literary style.
  • Broken Vessels,Andre Dubus (David R. Godine 1991). Autobiographical stories from an ex-Marine and prize-winning author, including the story of the automobile accident that cost him his legs. Dubus was a faithful Catholic, and the book is filled with sin and redemption, sin and redemption. He says that in his life, there is no sadness, only bitterness (he told Susan Stamberg, “I stay angry a lot.”) Dubus and Kriegel are members of what we might think of as the Tough Guy school of disability writing.
  • Plaintext,Nancy Mairs (U. of Arizona Press, 1986). Mairs has written extensively about living with MS. She was one of the first disabled feminists, and no lightweight feminist either. She believes, for example, that the prejudices and pressures and demands of a male-dominated society have created her depressive attacks. She, like Kriegel, has an aversion to what her body has become: “Because I hate being crippled, I sometimes hate myself for being a cripple. Over the years, I have come to expect — even accept — attacks of violent self-loathing.”
  • Happy Old Year,Marcelo Rubens Paiva, David George, translator (Latin American Literary Review, 1991). Marcelo is so full of life and love and heat and passion and being a kid that it becomes quite infectious. Before his diving accident at age 20, he was head of a music group called “The Turds.” He regales us with tales of the terrible political world of Brazil and then, a moment later, delights in being able to sit up for the first time in the hospital (he then passes out). He rails, as many of us have, at the lacks of modern medicine: “You mean that science hasn’t come up with some goddamn injection to take care of my problem. No operation, nothing? So it’s just me and my body? I can’t handle this, I’m not mature enough to face this by myself…Please, don’t leave me alone.”
  • Missing Pieces,Irving Zola (Temple, 1983). Zola originated the idea that disability is a socially constructed concept. “The very vocabulary we use to describe ourselves,” he writes, “is borrowed from that society. We are de-formed, dis-eased, dis-abled, dis-ordered, ab-normal, and, most telling of all, called an in-valid.” As a social scientist, he went to acquaint himself with Het Dorp, a village in the Netherlands designed to promote “the optimum happiness” of those with severe physical disabilities. Through the author’s growing awareness, what began as a sociological study became a socio-autobiography.
  • The Unexpected Minority,John Gliedman and William Roth (Harcourt Brace, 1980). “Of all America’s oppressed groups, only the handicapped have been so fully disenfranchised in the name of health,” write the authors. Unexpected Minority looks at disability in terms of freedom, politics and history, and it goes back to Plato, through the Christian concepts of sin, and even examines footbinding in China.
  • Still Here: Embracing Aging, Changing, and Dying,Ram Dass (Riverhead, 2000). Ram Dass–of Be Here Now fame — had a stroke, survived, and is now in a wheelchair. “I’ve grown to love my wheelchair (I call it my swan boat) and being wheeled about by people who care,” he tells us. He also says he “loves suffering.” These remarks may irritate many of us, but because of Dass’ great popularity, this book will be as influential as any on this list.
  • Rehabilitating America,by Frank Bowe (Harper & Row, 1981). I am usually bored to death with books about the politics of disability, but Barry Corbet said that if I didn’t include Rehabilitating America in this list, “the activists among us will feel jilted” (and, presumably, he and his friends will start picketing me and chaining their wheelchairs to my bathroom door). He’s right and I did.

This article originally appeared in New Mobility Magazine

Children & Youth

First-Person and Other Unique Children’s Books on Disability and Difference

By Barbara Kolucki (bakoluck@aol.com)

The number of books on topics related to disability has steadily grown since the 1980’s.  Many are excellent, and have often been written by family members with a disabled child or by adults who remember their experiences as disabled children.  Just like the first “dolls with a disability,” these books serve at least two purposes.  They try to present disability in ways that children who are disabled can find or see themselves in more positive and active roles, countering their previous invisibility or negative presentation .    Second, they attempt to sensitize young children to their disabled peers who through  advocacy movements and legislation, would now be integrated into school, play and community life.

Particularly over the last decade, new first-person books have started to appear more frequently.  These are often aimed at children with a particular disability or illness.  They have even branched out into related fields such as being a foster or adopted child.  All of these books aim at reassuring readers that they are not alone in their feelings about being different.  And many of the best also suggest some creative coping strategies to the young readers.

Here is a short list of some of the books in this new category.  We are interested in hearing from other countries so that we can include and reference these as well.
Kathy’s Hats (1992) by Trudy Kisher and illustrated by Nadine Bernard Westcott is published by Albert Whitman & Company, Illinois, USA.   Kathy begins by talking about her first hat – when she was just born and almost bald and her mom tied a little green ribbon to her “puff of fuzz”.  She goes on to talk about knitted hats from her grandmother, beach bonnets, playing dress-up with grown-ups’ old hats, Easter hats, sun-visors, bathing caps and baseball caps.  Then Kathy became seriously ill with cancer.  She talks about her feelings about being so ill and scared.  She describes her chemotherapy and how her mom made her squeeze her hand really tight when the intravenous needle was put into her arm.  And about how sometimes watching cartoons or drawing pictures helped her when she felt sick.  But then Kathy’s hair began to fall out – and she was “bald as when she was a baby”.   She then was given lots of different hats – and she hated them.  She complained about how she felt about wearing hats and one day her mom told her that she needed one more hat – a thinking cap.  This cap, she suggested could help her change how “she felt about things”.  After thinking about what are mom had said, she started to pin a little teddy bear on her hat and slowly, friends started to give her special pins that she could use to decorate her hats.  Then slowly “Sometimes I would even forget I was bald.”

The book is precious and very honest.  It is written by the mother of “Kathy” who did have cancer as a young child.  The book is a moving tribute to her daughter’s courage, and the courage of all children with cancer or similar illnesses.
My ABC Book of Cancer is written and illustrated by Shannon Chamberlain, a 10 year old with cancer.  It is a 1990 publication of Synergistic Press, 3965 Sacramento Street, San Francisco, CA 94118 USA.   Shannon takes us through each letter of the alphabet and tells us the story of her life with cancer.  She teaches us new words, like “B for Broviac” “.the inserted catheter that keeps her from getting poked with needles all the time.  She takes us though the feelings and emotions she relies on to keep going, including “C for courage, E for Effort and S for Strong”.   The book gives us a portrait of her supporters: F for father and friends, D for doctors and N for Nurses, P for People that pray for me (and please don’t stop).    And one of the most powerful is “Q for questions like, “Why me?’, “Will it hurt?’,  “Will I die?’ and “When is it going to be over?'”

There is also detailed information at the back of the book about Shannon and her type of cancer, leukemia, a glossary of terms related to cancer, a resource list and bibliography.   The bibliography included other books written by children with cancer as well as those about cancer, death and dying and being in a hospital.  A few books are written and illustrated by children as part of their “therapy”.   Some books are written from the point of view of a sibling and a few are references for adults.  This book is highly recommended – perhaps some children could use it as a resource for a class project, even if the illness has not affected them or their family to date.
Nervo to the Rescue: A Guide to Understanding MS for Kids and their Parents is a unique workbook published by the National Multiple Sclerosis Society and Deborah Miller, Ph.D. of the Mellen Center.  Their website is: http://www.beaseron.com. The address is P.O. Box 52171, Phoenix, AZ 85072-2171 USA.   This publication was designed to help children whose parent or family member has multiple sclerosis.  It addresses some of the child’s fears and suggests several creative activities to help children cope with their parent’s illness.

Nervo is a cartoon character who helps address children’s questions ranging from simply answering how MS affects the nervous system, why their parent now acts differently (has trouble walking, talking or seeing) and various things that might help parents (physical therapy, injections, medications).  A number of games are included in this activity book: unscrambling words related to MS, writing a poem (a cinquain of five lines of words that describe feelings or things), drawing a picture, making a greeting card, etc.   It also lists suggested ideas for what children can do to help or better understand their parent such as making a simple meal for them by themselves, choosing a simple chore, trying to remember that it is normal for their parent to feel both sad, confused and perhaps scared too.

The wonderful thing about this publication is that it demonstrates that it is OK to ask questions and to have a variety of feelings.  And it stresses that even with a new illness in one’s life – this does not change the way a child and parent feel about one another.  This is a workbook that can be adapted to any illness or disability.
Ear’s Looking at You Kid: A Fun and Easy Look at Your Hearing Impairment is written by Carole Marsh.  The book was published in 1998 by Gallopade, 200 Northlake Dr., Peachtree City, Georgia 31269 USA.  It is one of a series of Carole Marsh Books that include titles like “The Mystery Van Takes Off: Handicapped Kids in YOUR State go on a Wild Adventure”, “Math for Girls!: The Book with the Number to Help Girls Love & Excel in Math”, “Get Ready, Get Set, Go!: Space Stuff for Kids”, etc.

The book is written in a very distinct and interesting style.  The author teaches about the physiology of the ear, continually making analogies to objects and other things that children might already know (e.g. she describes and illustrates the cochlea with an analogy of a snail).  She describes an earful of terms simply showing the root of a word and how different endings mean different things (oto, otoscope, otolaryngologist, etc.). She includes information about famous people who had hearing impairments (e.g. Beethoven, Alexander Graham Bell, Linda Bove from the Sesame Street television program,  Helen Keller).  Simple technological devices are explained – from hearing aids and TTYs, to alarm clocks and doorbells adapted using lights or vibrations.

One chapter, entitled “How to Help Yourself”,  features suggestions on how to balance asking for help with focusing and asking for a signal when it is time to listen and watch what someone is saying.  Also included are many interactive pages where the child reading the book is encouraged to write out opinions, questions, feelings, etc.

Deaf people and their advocates might object to Ms. Marsh’s concentration on hearing impairment when she really is talking about deafness as well as impairment.  But the book is worth reading and presents a new genre of very open and engaging books that explain disability in a new and interesting way.
I’d Rather Be with A Real Mom Who Loves Me: A Story for Foster Children is written by Michael Gordon, Ph.D. and illustrated by Janet Junco.  It is a 1995 publication of GSI Publications, Inc., P.O. Box 746, DeWitt, New York, N.Y. 13214 USA.  The book begins with a page written for adults who are reading this book along with a foster child.  The author talks about the dearth of materials designed to help children deal with this difficult issue and their separation from their families.  He stresses the importance of the emotional concerns of the child and how if they are addressed early, they might possibly prevent some of the more difficult emotional or behavioral issues later.

The book is written from the point of view of a little boy who talks about being a foster child.  He shows in a picture that he changes the title of a drawing from “My House” to “Where I Live”.  He talks about his memory of his real mom being drunk and a father who was “scary and did things I don’t want to talk about”.   He remembers wondering why someone could not love and protect him from bad things.  He talks about his world being taken over by people like case workers and therapists.  And he asks: “Can you believe they expect me to do well in school?”

The book is a very honest look at how foster children can feel about the changes in their lives and the difficulties they can have trusting and loving again.  One of the best things about this book is that it first acknowledges the many problems but then focuses on several solutions for difficult feelings.  The major hurdle is to “get it through my thick skull that it’s not my fault how things have worked out”.   Emphasized are ways to find others in similar situations, learning to use a safe ways to express feelings, talking when they need to talk, etc.

The author has written several other books on a variety of topics including: Jumpin’Johnny Get Back to Work! A Child’s Guide to ADHD/Hyperactivity, I Wish I Could: A Teacher’s Guide to ADHD/Hyperactivity, and the “Jumpin’ Johnny book in Spanish.
I Am Not Dumb is a 1981 publication by Ahmed Motiar and published by Z.A.N. Press, 151 Snowshoe Crescent, Thornhill, Ontario, Canada, L3T 4N1.   The book begins with a mother and son walking down a street where they see Peter playing ball.  The son thinks that the boy must be lazy and that is why he cannot learn.  His mother explains how different people have different skills and encourages her son to talk to Peter.  As they get to know each other, Peter confides that he is often made fun of and also sometimes gets into fights with people who call him names.  He explains too, that he has a learning disability and which things are difficult for him to learn.   The boys ask their teacher to explain what a learning disability to their class as one way to get all children to understand differences.

The book is old (1981) but it was one of the first that I found about addressing learning disabilities.  It is very matter-of-fact and a very readable book for children 10 years or older.  I have contacted the publisher to find out if there are more recent versions or additional books.   Do any of our readers know?
The Jester Has Lost His Jingle is written and illustrate by David Saltzman, a young adult who has Hodgkin’s disease.  He had previously written a poem about humor and when he was diagnosed with his disease in his last year at Yale and was crying about his situation – this line popped into his head.  “Here I lie, I have a tumor””And you ask me where’s my sense of humor?”  And the Jester was born.

The book is written in verse and is about a world where everyone lost his or her sense of humor – all except a Jester.  The King banishes him away and he goes on a journey to find and bring laughter back to the world.  He travels all over the world and sadly finds it empty of songs of birds, and full of bitter people, pain and tears.  He moves on to a hospital where he stumbles into a room with a little girl and asks her “How come laughter’s not with you?” and she responds with his original line “Here I lie, I have a tumor”and you ask me where’s my sense of humor?”.  She tells him that she is sick of trying and does not feel like laughing at all.   The jester then in a sensitive, sweet and funny way, helps the girl to smile – and then laugh!   The laughter slowly spread throughout the hospital and as one person smiled – another smiled back.  He returns to the King and tells him that laughter was not lost – it was hiding deep inside everyone.  Including “YOU”.

The young author died in 1990.  His book was published in 1989 by The Jester Co., Inc., P.O. Box 817, Malaga Cove Plaza, Palos Verdes Estates, CA 90274, USA.
Nos Todos Somos Differentes  is one of a series of books published by UNICEF – Mozambique and the Secretariat of Social Action in 1992.  The author and illustrator is Angelina Neves.

This particular booklet, “We are all Different”  is about three girls who are friends.  They spend a great deal of time together playing, pretending, doing homework, etc.  One likes to sew, another likes animals and the third is a “tomboy” always climbing, running and jumping.  The girl who narrates the book had polio.  As she talks about how they all help and complement one another, she notes how when she is doing her “exercises,” the others join her.  The “tomboy” helps her with these and always encourages others to exercise – she believes that if people did more exercises and sports that they would expend their energy and the world would have fewer fights and wars.

At the end of the booklet, there is a simple explanation of polio and a list of important things to remember about children’s rights and their health.

This is a wonderful series – there are other booklets about different disabilities.  They are written in a simple, direct way and are of interest to both children and adults.  The health issues are those of more critical importance in developing countries – but the overall message of difference and value is of critical important to everyone, anywhere.

The booklets can be obtained through UNICEF-Mozambique, 3 U.N. Plaza, N.Y., N.Y. 10017 USA.
International Documentation Center

International Board on Books for Young People (IBBY):  Outstanding Books for Young People with Disabilities.  This documentation centre is part of the Department of Special Education, University of Oslo, Norway.  They publish a list on a biennial basis and the 1999 list includes a wonderfully diverse selection of books from various countries.  For example:

  • The Handmade Counting Book by Laura Rankin which shows children how to count using American Sign Language (ASL).
  • Der kleine Lalu (the little Lalu) by Helga Hornung is a Swiss picture book with Bliss symbols and regular text.
  • Hvad er Dat? (What is that?) by Virginia Allen Jensen and Dorcas Woodbury Haller is a Danish version of a tactile picture book that can be read by sighted and blind children.
  • Gol ya Poutch (Full or Empty) by Zahra Farmani and Mahin Mahboobi is a handmade washable book about an Iranian guessing game that children play.
  • Limpan ar sugen (Doggie is hungry) by Eva Lindstrom is a Swedish book without text that can be appropriate for all children, including those who are mentally retarded or have a learning disability.
  • Soren er mongo (Soren has Down Syndrome) by Mette Jorgensen and Henrik Bjerregrav is a Danish photo book about a seven year old and his friends and family.
  • Ian’s Walk by Laurie Lears is about a boy with autism and his siblings.

The booklet also includes an annotated list of several other books from India, France, Columbia, Japan, Brazil, Finland, Greece, Iceland, the Slovak Republic, South Korea and Switzerland.   It is a unique international resource.

The catalog is distributed through the IBBY Secretariat, Nonnenweg 12, Postfach, CH-4003 Basel, Switzerland.  Email: ibby@eye.ch  or n.s.a.reidarson@isp.uio.no

DISABILITY STUDIES : INFORMATION AND RESOURCES

Edited and Compiled by
Steven Taylor, Bonnie Shoultz, and Pamela Walker

With contributions by
Jagdish Chander, Beth Ferri, Perri Harris, Lori Lewin,
Michael Schwartz, Zach Rosetti, Julia White, and Rachael Zubal-Ruggieri

.

Introduction

Disability Studies refers generally to the examination of disability as a social, cultural, and political phenomenon. In contrast to clinical, medical, or therapeutic perspectives on disability, Disability Studies focuses on how disability is defined and represented in society. From this perspective, disability is not a characteristic that exists in the person so defined, but a construct that finds its meaning in social and cultural context.

Disability Studies is a vibrant and diverse “field” or “area of inquiry.”  First of all, it is interdisciplinary and multi-disciplinary. No single academic discipline can place a claim on Disability Studies. Rather, the field is informed by scholarship from such different disciplines as history, sociology, literature, political science, law, policy studies, economics, cultural studies, anthropology, geography, philosophy, theology, gender studies, communications and media studies, and the arts.

Second, Disability Studies covers an incredibly diverse group of people. People who are blind, deaf, use wheelchairs, have chronic pain, learn at a slower pace than other people, and so on have vastly different experiences and perspectives. Does it make sense to lump such different human beings under a simple category such as disability? It does—not because they are the same in any biological or philosophical sense, but because society has placed them in this category, with consequences for how they are viewed and treated by the majority presumed to be nondisabled.

Finally, it is usually easier to define what Disability Studies is not (not medicine, rehabilitation, special education, physical or occupational therapy, and professions oriented toward the cure, prevention, or treatment of disabilities) than to specify what it is. Although Disability Studies scholars generally subscribe to the “minority group model” of disability—the view that the status of people as a minority shapes their experiences in society, they agree on little else. For example, some scholars view disability in terms of culture and identity, while others see disability as a label and a social construct.

Scholars even use different language to refer to the people at the center of inquiry in Disability Studies. “Disabled person” is used to draw attention to the centrality of disability in individual identity; “person with a disability” or “people first language” conveys the idea that having a disability is secondary to the people’s identity as human beings; “person labeled disabled” (mentally retarded, mentally ill, and so on) focuses on how disability is a socially constructed definition imposed on people. Within sub-groups, minor variations in language and spelling can carry tremendous significance. Thus, “deaf person” and “Deaf person” mean very different things, with the latter emphasizing membership in a culture defined linguistically.

This information package reflects the diversity of the field of Disability Studies. We have included contributions representing different disability groups, perspectives, and disciplines.

The information package is divided into nine sections. The first contains annotations and listings of books, chapters, and articles. Practically every week a new writing related to Disability Studies is published. It is almost impossible to keep up with scholarship in this area. In preparing these annotations and listings, we have undoubtedly overlooked important work. An omission of a book, chapter, and article does not necessarily mean that we think it does not belong. It likely means we did not come across it or forgot about it. In addition, although we tried to annotate what we see as the most important contributions in Disability Studies, some readings on the non-annotated list warrant serious attention.  As with any writing project, at some point you need to “get it out the door.”

The next section includes annotations and a listing of films and documentaries. As in the case of the readings, these are not intended to be comprehensive.

The following section contains a list, with a general description and contact information, of academic programs in Disability Studies in North America. Of course, Disability Studies scholarship is not limited to North America. Academic programs can be found in the United Kingdom and other countries. Since we are located in North America, information on programs  in the United States and Canada is most readily accessible to us. In a future version of this package, we might attempt to identify programs on other continents.  Before reviewing this list of academic programs, readers should consult our criteria for inclusion.  The list is confined to colleges and universities that offer formal degrees, minors, majors, certificates, or concentrations in Disability Studies.  Many other universities and colleges offer courses on Disability Studies or host relevant research institutes and conferences.  We did not attempt to identify these in this listing.

The next five sections contain information on periodicals, special or feature issues of periodicals, organizations, special interest groups of professional or academic associations, and Internet resources.

In the final section of this information package, we make suggestions of books and readings on Disability Studies that can be used in courses in various academic disciplines.

If we have overlooked any writings, films, programs, organizations, or resources in preparing this information package, we would appreciate it if readers brought these to our attention. Although this package is dated November 2003 to reflect when formatting and editing were completed, most of the listings were finalized in summer 2003.

Steven J. Taylor, Ph.D.
Director, Center on Human Policy
Professor, Cultural Foundations of Education
Coordinator, Disability Studies
Syracuse University

  DISABILITY STUDIES BOOKS, CHAPTERS, AND ARTICLES

Annotated Books, Chapters, and Articles

The following section is comprised of selected Disability Studies books, chapters, and articles. They are across disciplines, and a large amount of them are edited books that cover a variety of topics, including disability rights, identity politics, cultural studies and disability, social perspectives on disability, and perspectives of people with disabilities. Also included are a number of fictional pieces and poetry. For other resources, following this listing is a separate section on autobiographies and personal narratives, a selection of classics from one Disability Studies scholar’s perspective, and a bibliography of titles that we were unable to include either due to time constraints or space limitations.

Albrecht, G. L., Seelman, K. D., & Bury, M. (Eds.). (2001). Handbook of Disability Studies. Thousand Oaks, CA: Sage Publications.

This volume includes contributions from an international, multidisciplinary set of Disability Studies scholars. It is divided into three sections: the shaping of Disability Studies as a field; experiencing disability; and disability in context. Each section contains chapters addressing conceptual, theoretical, methodological, practice, and policy issues. Overall, the intent of the book is to organize existing knowledge within Disability Studies, highlight tensions and debates within the field, and point to future research and practice needs. It is a comprehensive resource, which will be of use to disability activists, scholars, and policy makers.

Barnartt, S., & Scotch, R. (2001). Disability protests: Contentious politics, 1970-1999. Washington, DC: Gallaudet University Press.

This book presents an analysis of contentious political action within the deaf and disability communities. The authors note that within scholarly examinations of social movements, there is almost no literature addressing the deaf or disability movements. This book is intended to fill that gap, through analysis of actual protest events. In examination of protests, the authors discuss the history of collection action, various aspects of protests (e.g., cross disability and impairment-specific), the effects of protests, and the future of such political action.

Barnes, C., & Mercer, G. (2003). Disability [Key Concepts]. Cambridge, UK: Polity Press.

Drawing from international literature and a range of disciplinary perspectives, Barnes and Mercer explore the evolution of the concept of disability. The book highlights the exclusion and marginalization of disabled people across different historical and cultural contexts, such as family life and reproduction, education, employment, leisure, cultural imagery, and politics. Disability is discussed in relation to social oppression, similar to that experienced by women, minority ethnic and racial groups, and lesbians and gay men. Key issues addressed include: theorizing disability; historical and comparative perspectives; experiencing impairment and disability; professional and policy intervention in the lives of disabled people; disability politics, social policy, and citizenship; and disability culture.

Barnes, C., Mercer, G., & Shakespeare, T.  (1999). Exploring disability: A sociological introduction. Cambridge, UK: Polity Press.

This book provides an introduction to the Sociology of Disability. The authors trace the history of sociological theorizing on disability and chronic illness and pay special attention to the British “social model of disability” that emerged in the late 1980s and 1990s. As noted by the authors, the social model of disability is a political account of disability grounded in the experiences of disabled people and activists, rather than a sociological framework. The authors review literature and policies on disability in both the United Kingdom and North America. The book would be a useful introductory text in Sociology of Disability, Disability Studies, and Disability Policy courses.

Barnes, C., Oliver, M., & Barton, L. (Eds.). (2002). Disability studies today. Cambridge, UK: Polity Press.

The book compiles the works of some of the leading scholars of Disability Studies from the UK, USA and Canada. The contributors include Paul Abberley, Gary L. Albrecht, Colin Barnes, Len Barton, Peter Beresford, Anne Borsay, Harlan Hahn, Chris Holden, Bill Hughes, Phil Lee, Geof Mercer, Mike Oliver, Marcia H. Rioux, John Swain, Carol Thomas and Ayesha Vernon.

This textbook presents an analysis of the issues in Disability Studies primarily in the context of Britain and the United States, while contributors like Chris Holden and Peter Beresford (Chapter 10) and Marcia H. Rioux (Chapter 11) present issues in the context of globalization. Other main topics covered in the book include: the history of the development of Disability Studies in Britain and America; key ideas, issues and thinkers; the role of the body; divisions and hierarchies; history, power and identity; work, politics and the disabled peoples’ movement; human rights, research and the role of the academy.

Baynton, D. C. (1996). Forbidden signs: American culture and the campaign against sign language. Chicago: University Of Chicago Press.

Douglas C. Baynton, an assistant professor of history and American Sign Language at the University of Iowa, has produced a rich history of the varied and sundry attempts that have been made to oppress the use of sign language. The book touches upon the cultural aspects of deafness and presents an interesting study of American cultural history with reference to the difference in perception of hearing people like Alexander Graham Bell and deaf people who asserted for their right to use sign language. Through a very powerful narrative, “Baynton places this struggle between the ‘manualists’ and the ‘oralists’ into its very broadest cultural context, seeking to offer fresh perspectives on the shifting ways in which Americans have conceptualized human history and American identity, nature and human nature…” (Journal of American History , September 1997).

Biklen, D. (1988). The myth of clinical judgment. Journal of Social Issues, 44(1), 127-140.

This article challenges the primacy of professional decision-making and argues that clinical decisions are influenced by other factors such as economics, bureaucratic exigency, politics, service traditions, and societal prejudice.

Blatt, B., & Kaplan, F. (1974). Christmas in purgatory: A photographic essay on mental retardation. Syracuse, NY: Human Policy Press.

This is a reprinted edition of Blatt and Kaplan’s 1966 photographic exposé of conditions in America’s institutions. Shot with a hidden camera, Christmas in Purgatory depicts overcrowded and dehumanizing conditions found at eight institutions in the Northeast. Blatt was one of the few professionals to speak out against institutional warehousing in the 1960s.

Bogdan, R. (1988). Freak show: Presenting human oddities for amusement and profit. Chicago: University of Chicago Press.

A social history of the depiction of “human oddities,” including people with disabilities, for amusement and profit, Freak Show is a classic study of depictions of disability in popular culture.

Bogdan, R., & Taylor, S. J. (1989). Relationships with severely disabled people: The social construction of humanness. Social Problems, 36 (2), 135-148.

The authors discuss how nondisabled people define their caring and accepting relationships with people with severe disabilities. The authors frame their discussion around a sociology of acceptance and identify four dimensions which maintain humanness of the people with severe disabilities: attributing thinking to the other, seeing individuality in the other, viewing the other as reciprocating, and defining social place for the other.

Bogdan, R., & Taylor, S. J. (1994). The social meaning of mental retardation: Two life stories. New York: Teachers College Press.

The concept of mental retardation is challenged through life histories based on in-depth interviews with former inmates of institutions for people labeled retarded. The authors argue that mental retardation is not a real entity, but rather a social construction.

Braddock, D. (Ed.). (2002). Disability at the dawn of the 21st Century and the state of the states. Washington, DC:  American Association on Mental Retardation.

This fifth edition is the most extensive edition of The State of the States volumes. It is divided into three parts. Part I explores the historical basis of disability services, based on a cross-disability perspective. Part I also includes a cross-disability empirical study of public financial support for disability in the United States, across federal, state, and local levels, and across mental and physical disability categories. Part II presents updated state-by-state profiles, which examine programmatic structure and financing of mental retardation/developmental disabilities services. Emerging trends and issues are identified, including aging family caregivers, class action litigation with regard to waiting lists for residential services, and the growth of the Medicaid Home and Community Based Services Waiver. Part III is an in-depth comparative study of the development of institutional and community services in two states: Michigan and Illinois.

Bragg, L. (2001). Deaf world: A historical reader and primary sourcebook. New York: New York University Press.

This is a comprehensive anthology of Deaf history and culture.  It includes several chapters on race and gender.

Brueggemann, B. J. (1999). Lend me your ear: Rhetorical constructions of deafness.  Washington, DC: Gallaudet University Press.

Weaving personal narrative with critical analysis, Brueggemann explores the social construction of deafness through a variety of discursive practices. The book explores issues of passing as well as Deaf identity, culture, and the rhetorics of silence.

Burch, S.  (2002). Signs of resistance: American Deaf cultural history, 1900 to 1942.  New York: New York University Press.

Historians have assumed that the triumph of oralism was total, but Susan Burch aims in her book to debunk that assumption by showing that deaf students, teachers, and staff in the schools for the deaf consistently and creatively subverted oralist policies and goals within the schools.  Burch’s main argument is that the strenuous efforts of oralists to assimilate deaf children resulted in strengthening the children’s ties to a separate Deaf cultural community. In her book, Burch, a professor of history at Gallaudet University, reinterprets early 20th-century history of the deaf community.  Using community sources such as deaf newspapers, memoirs, films, and interviews with deaf people, Burch demonstrates how the deaf community mobilized against the oralist onslaught, defended its language, became more and more politically conscious, and clarified its cultural values. In this struggle, a collective deaf consciousness, identity, and political organization arose.

Campbell, J., & Oliver, M. (1996). Disability politics: Understanding our past, changing our future. London and New York: Routledge.

This book uses the voices of disabled people to describe the changes in the disability sector in Britain as a result of the social movement of disabled people, particularly in the 1970s to mid 1990s. According to the authors, “the book is based upon the ethnographic and action research traditions” (p. 25) and “is a mixture of social theory, political history, action research, individual biography and personal experience” (p. 1). This work is regarded to be a significant contribution to history, social theory and policy, and political studies. The book clearly traces the emergence and survival of the disability movement and provides an honest evaluation of its successes and failures. It then goes on to consider possible future directions for disabled people in 21st century Britain. It is great contribution to the promotion of the understanding of the disability movement in Britain.

Charlton, J. I. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.

The author uses a disability rights standpoint to discuss the international oppression of people with disabilities. He provides a theoretical framework for understanding disability oppression not as something that has come from the attitudes of people without disabilities, but because of systems and structures of oppression from which these attitudes stem. He uses interviews with disability rights activists from around the world to back his argument.

Clare, E. (1999). Exile & pride: Disability, queerness, and liberation. Cambridge, MA: South End Press.

“Gender reaches into disability; disability wraps around class; class strains against abuse; abuse snarls into sexuality; sexuality folds on top of race…everything finally piling into a single human body. To write about any aspect of identity, any aspect of the body, means writing about this entire maze. This I know, and yet the question remains: where to start?” (p. 123)

Eli Clare investigates disability, class, queerness, child sexual abuse, and conflicting political and environmental awarenesses, using the metaphors of landscape and her own experience. She recalls and brings to life images of the mountains and forests, rivers and oceans of her childhood in rural Oregon, her body, and her many homes, in these musings on home, exile, politics and experience.

Corker, M. (1998).  Disability discourse in a postmodern world. In T. Shakespeare (Ed.), Disability Studies reader: Social science perspectives (pp. 221-233).  London & New York, NY: Cassell.

Argues for a discursive approach for understanding deafness and disability.

Corker, M., & Shakespeare, T. (Eds.). (2002). Disability/postmodernity: Embodying disability theory. New York: Continuum.

This collection of 17 essays from leading scholars around the world applies the analysis of postmodernity to Disability Studies in hopes of bridging social science perspectives and humanities perspectives on disability. Recognizing that the global experience of disability is far too complex to be limited by one set of ideas, the editors attempt to build on the social model of disability, in essence “thinking globally and acting locally at the same time.” While the theory advances to the next level, the goal remains the same: to achieve inclusive communities and “to contribute to the emancipation of disabled people, whoever they are, and whatever they decide that emancipation means.” Loosely organized into three sections, the volume begins with an exploration of theoretical perspectives, including concepts of difference, identity, and the body. It follows with a focus on culture and disability and ends by delving into social practice, inspiring us all to ponder what it will take to realize inclusive societies.

Couser, G. T. (1997).  Recovering bodies: Illness, disability, and life writing.  Madison, WI: University of Wisconsin Press.

Literary analysis of the ever-growing genre and subgenre of personal narratives of disability and illness.

Crutchfield, S., & Epstein, M. (Eds.). (2003). Points of contact: Disability, art and culture [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press.

Overview of the role of art in the social construction of disability. Also explores counter images of disability in art that resist or talk back to conventional portrayals.

Davis, L. J. (1995).  Enforcing normalcy: Disability, deafness, and the body.  London & New York: Verso.

A critical and historical analysis of the construction of normalcy. Includes a chapter interrogating disability and the female nude and concludes with a cogent argument for why disability must be included in the usual triad of gender, race and class.

Davis, L. J. (Ed.). (1997). The Disability Studies reader. New York: Routledge.

This edited reader is a collection of classic and new essays, as well as fiction and poetry, in the field of Disability Studies. This perspective places disability in a political, social, and cultural context that theorizes the construction of disability in this society. The authors address such areas as feminist theories of disability, the construction of deafness, and disability as metaphor. The book is divided into seven sections, including historical perspectives, politics of disability, stigma and illness, gender and disability, disability and education, disability and culture, and fiction and poetry. This is progressive reading, but it should be of note that it is traditional in the sense that Disability Studies translates to “physical Disability Studies” and there is little mention of developmental disability.

Davis, L. J. (2002). Bending over backwards: Disability, dismodernism & other difficult positions [Cultural Front]. New York: New York University Press.

This is a book of essays focusing on themes related to disability identity and Disability Studies. He notes the silence regarding disability identity versus other identities such as race, gender, or sexual orientation.  He argues that instability of the disability category can be the beginning of a new way of thinking about all identity categories. As he states, “The dismodern era ushers in the concept that difference is what all of us have in common. That identity is not fixed but malleable.” Essays in the book illustrate the key role that Disability Studies can play in terms of cultural criticism and theory.

Deutsch, H., & Nussbaum, F. (Eds.). (2000). “Defects”: Engendering the modern body [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press.

Organized around three broad topics: disability, monstrosity, and imperfections, the collection examines the cultural construction of dis/ability during the early modern and Enlightenment periods. The final chapter by Kaplan troubles feminism’s historical grounding in the rhetoric of liberal individualism and autonomy.

Eiesland, N. (1997). The disabled God: Toward a liberation theology of disability. Nashville, TN: Abingdon Press.

Through this book, Eiesland, who became disabled as a child when she had polio, helps the reader to see how the “hidden history” of conventional bodies living ordinary lives with grace and dignity, disgust and illusion, can make for both a theological and pastoral contribution. Arguing for a liberation theology, she calls on us to move away from our defining of people with disabilities as people who need to adjust to a minority group that is subject to social stigmatization. While her examples tend to be based on the experiences of people with physical disabilities, what she has to say also is insightful for those working to include people with developmental disabilities in faith communities.

Fawcett, B. (2000). Feminist perspectives on disability. London: Pearson Education.

Illustrates the parallels between Disability Studies and feminist theory, as well as possibilities of a feminist poststructuralist approach to the study of impairment and disability.

Ferguson, P. (1994). Abandoned to their fate: Social policy and practice toward severely retarded people in America, 1820-1920 [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

A historical study of social policy and practice toward people labeled “idiots” or “severely retarded.” Ferguson examines the problem of “chronicity” and shows how people with the most severe disabilities have been and continue to be excluded from reform movements.

Ferguson, R. J. (2001, July). We know who we are: A history of the blind in challenging educational and socially constructed policies–A study in policy archeology [Critical Concerns in Blindness Series, No. 1].  San Francisco: Caddo Gap Press.

Most of the academic works dealing with the history of education of blind people and the social policies related to the field of blindness in the last century were written by the people who worked within the “blindness system” and/or were sympathetic to its interests. This book is a rare academic work of its kind that provides a different perspective in order to show the conflicts that the organized blind encountered with the professional culture of the blindness system and their efforts to create educational policies for the blind instead of in conjunction with the blind. By using “policy archaeology” as a framework, the author has made a good attempt to write a history, from the perspective of the organized blind, of their struggle against discrimination as the result of educational and social policies created by professionals in the area of blindness.

The author describes the nature of the conflicts and issues raised by the organized blind in their pursuit of having their voice heard in educational policy decisions related to themselves.

Fine, M., & Asch, A. (Eds.). (1988). Women with disabilities: Essays in psychology, culture, and politics [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

Fine and Asch, the editors of this volume, have for a number of years been involved in examining what it means to be a woman with a disability in today’s society. Their early conceptualization of the problems facing women with disabilities has been very influential in the field. This comprehensive, edited collection addresses a wide range of issues that are critical in the lives of women with disabilities. The chapters are organized in three categories: “Bodies and Images,” “Disabled Women in Relationships,” and “Policy and Politics.” In a lengthy introduction, Asch and Fine review past work on the subject and point toward future exploration. The editors also close the book with an epilogue entitled, “Research and Politics to Come.” Like all collections of essays, the quality is uneven. Taken together, however, this is an important collection, covering a broad range of critical issues. For example, the volume addresses issues relating to women with developmental disabilities, a group that has traditionally been neglected in volumes on women with disabilities. Other critical issues dealt with include:  disability and ethnicity, the moral dilemma between reproductive rights and disability rights, a discussion about girls with disabilities, and an analysis of the exclusion of women with disabilities from the women’s movement. This is a book that everyone interested in the lives and experiences of women with disabilities should read.

Fries, K. (1995, September/October). Cross-cultured. Disability Rag & Resource, 47-48.

Fries explores what it is like to be both disabled and gay, to be in the minority in each of his communities and the interesting intersections in how a disabled gay man is viewed. He gives the example of how gay men are viewed by non-gay people as sex-obsessed, while disabled men are stereotyped as asexual. On the other hand, one of the major problems he and others face is lack of presence if not invisibility. He asks editors and producers, in particular, to recognize the gay disabled man as a character and a reader/viewer.

Fries, K. (Ed.). (1997). Staring back: The disability experience from the inside out. New York: Plume.

This book, edited by Kenny Fries, explores the experience of disability through writings by contributors who have disabilities. The collection includes nonfiction, poetry, fiction, and drama by such authors as Nancy Mairs, John Hockenberry, Anne Finger, Adrienne Rich, Mark O’Brien, and Marilyn Hacker. Each chapter explores disability not as something that limits one’s life, but as an experience all its own. Fries considers the theme of this edited book as one of human connection, “connection with the past, connection with one another, connection with our bodies, connection with ourselves.”

Garland-Thomson, R. (1994). Redrawing the boundaries of feminist Disability Studies. Feminist Disability Studies, 20(3), 583-597.

In this review essay, Rosemarie Garland-Thomson argues for the recognition of feminist Disability Studies within feminism. She states that feminist critical analysis does not usually recognize disability as a category of otherness (as it does with race, class, and gender) unless the study specifically states this focus. Although helpful, she would like to see a shift away from women’s autobiographical accounts of their own experiences with disability, which often promote the “disaster/terror/pity scenario of disability,” to an articulation of feminist Disability Studies as a “major critical subgenre within feminism.” She asserts that feminist Disability Studies can be located in the broader area of identity politics if discourses of the body marked as deviant are included.

To illustrate her argument, Thomson draws on four feminist works.  The first three, Invalid Women: Figuring Feminine Illness in American Fiction and Culture, 1840-1940 by Diane Price Herndl, Monstrous Imagination by Marie-Helene Huet, and Tattoo, Torture, Mutilation, and Adornment: The Denaturalization of the Body in Cultural Text edited by Frances E. Mascia-Lees and Patricia Sharpe, do not deal with “disability” specifically; instead, Thomson interprets these works in a feminist Disability Studies perspective. She uses the fourth book, Barbara Hillyer’s Feminism and Disability , because it specifically addresses the issue of disability and feminism, and because it embodies the feminist principle that the personal is political. Thomson hopes that these four books introduce perspective into the emerging field of feminist Disability Studies.

Gleeson, B. (1999). Geographies of disability. New York: Routledge.

Space, mobility, and accessibility are critically important issues for people with disabilities, but this is given very little attention by social policy makers, urban planners, architects, and social science researchers. Brendan Gleeson steps into the breach with this book, which looks at how geography shapes disabled people’s experiences and explores the relationship between space and disability. Gleeson explicates how space, place, and mobility are central to the lives of people with disabilities.

Drawing on a wide range of case studies and historical and contemporary data sources, including maps and photographs, Gleeson, an Australian scholar, presents the key theories and issues of the geography of disability. The book is organized into three parts. The first part presents a critical appraisal of theories of disability and space and develops a disability model based on geography. The second part is a historical perspective and relies on case studies to show the impact of the emergence of capitalism on the lives of disabled people. The third part explores contemporary disability issues: the Western city and the important policies of community care and accessibility planning.

Goode, D. (1994). A world without words: The social construction of children born deaf and blind [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

Based on his study of two girls who were born with rubella and are deaf-blind and mentally retarded, Goode argues that despite a use of formal language, human beings can communicate and be understood through other means. He shows how the children created their own set of symbols to construct their reality using senses other than sight and sound.

Groce, N. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Cambridge, MA: Harvard University Press.

This ethno-historical study is an excellent portrayal of community life for deaf and hearing individuals of Martha’s Vineyard. The reader is presented with the history of how the deafness was brought to the island. The book allows the reader to view the typicality of the lives of Islanders who were deaf, typicality due to the community’s acceptance and ability to communicate with them. Groce takes us beyond the confines of medical or social definitions of deviancy and offers evidence that our pre-conceived stereotypes of what a disability may mean are really determined by the social construct we create as a society.

This well-researched book is a must, not only for people interested in the field of disabilities, but for anyone trying to struggle with inclusion into community life. The book is a simple thesis offering a profound message in a wide array of disciplines. It will add thought to issues that will remain unresolved and discussed for a long time to come.

Herndl, D. P. (1993). Invalid women: Figuring feminine illness in American fiction and culture, 1840-1940. Chapel Hill, NC: University of North Carolina Press.

Close textual readings of literary representations of disability and illness in literary texts by such authors as Harriet Beecher Stowe, Charlotte Perkins Gilman, Edith Wharton, Tillie Olsen, and others.

Hershey, L.  (various dates).  Poems and tapes: On the lawn , In the way, Dreams of a different woman (these are books of poetry); The prostitutes of Nairobi , You get proud by practicing (these are tapes of the author reading her poems). Denver, CO: Author.

Hershey’s very powerful poems are about disability rights and lesbian sexuality. Her work includes essays in a variety of periodicals as well as these books and tapes. Well worth sending for, at $5 per book and $7 per tape. Some of the poems can be read at http://www.cripcommentary.com/ .

Hillyer, B. (1993). Feminism and disability. Norman, OK: University of Oklahoma Press.

Written out of a need in the feminist movement to include women with disabilities and a need in the disability rights movement to address the unique experiences of women, Feminism and Disability combines the personal, political, and intellectual aspects of feminist theory and disability theory. Hillyer discusses such issues as body awareness, community, nature and technology, and the ways in which cultural standards of language, independence, and even mother-blaming are constructed. She also challenges political movements which stress productivity and normalization in order to include more types of people and more aspects of the human condition.

Hubbard, R. (1997). Abortion and disability: Who should and should not inhabit the world. In L. Davis (Ed.), The Disability Studies reader (pp. 187-202). New York: Routledge.

Links reproductive technologies and genetic testing with the history of eugenics.

Imrie, R. (1996). Disability and the city: International perspectives.   London: Paul Chapman Publishing Ltd.

Rob Imrie takes exception in this book to the common perception of people with disabilities as helpless dependents who survive only on government benefits. Imrie challenges the stereotypes of disability as “pitiful,” and as “less than human,” and does so by exploring a critical context within which disabled people experience marginalization and ostracism: the built environment and physical access. In eight chapters dealing with the city, the physical environment, state policy, design, planning, and access, Imrie considers the role of design professionals–architects, planners, and building control officers–-in the construction of specific spaces which bar people with disabilities and keep them out. From broken streets and sidewalks to the absence of FM loop systems in buildings, disabled people constantly and repeatedly negotiate hostile environments.  Drawing on a range of data and material from the United Kingdom and the United States, Imrie shows how the environmental planning system in Britain attempts to address the inaccessibility of the built environment, and how people with disabilities contest the restrictions placed on their mobility.  Rob Imrie derives his insights from a wide range of social science disciplines–-geography, sociology, and environmental planning–-to craft a full picture of inaccessibility and struggle.

Ingstad, B., & Whyte, S. R. (Eds.). (1995). Disability and culture. Berkeley: University of California Press.

This edited book takes a global look at disability. Each chapter reflects understandings of disability from different cultures. Its anthropological focus examines the relationship between disability and culture, explaining disability in terms of social processes from a multicultural perspective. Contributing authors, who have done research in places such as Borneo, Kenya, Uganda, Nicaragua, as well as Europe and North America, explore the meanings of different types of disabilities to different cultures, and seek to understand the assumptions about humanity and personhood derived from their understandings of disability.

Jahoda, S. (1995). Theatres of madness. In J. Terry & J. Urla (Eds.), Deviant bodies: Critical perspectives on difference in science and popular culture (pp. 251-276). Bloomington, IN: Indiana University Press.

Photo-essay of 19th and 20th century representations of insanity and “female disorders” juxtaposed with advertising images, letters, diaries, case histories, and fictional texts.

Johnson, M. (2003). Make them go away: Clint Eastwood, Christopher Reeve & the case against disability rights. Louisville, KY: The Advocado Press.

This must-read book analyzes individual, state, and federal reactions to the Americans with Disabilities Act of 1990 (ADA). Kicking it off with the media examples of Clint Eastwood and Christopher Reeve, Mary Johnson, founder and editor of The Disability Rag and Ragged Edge magazines, ties together individual experiences, watershed cases, popular culture, and media coverage to offer a cultural and historical analysis of disability rights before and after the ADA. With an honest tone she confronts an overwhelming prejudice against people with disabilities manifest by an inexcusable inaccessibility to the world in which we all live. She describes the current state of the ADA and challenges a society that welcomes people with disabilities in theory but prevents them from living full lives in practice. “A law cannot guarantee what a culture will not give.”

Keith, L. (Ed.). (1994). Mustn’t grumble: Writings by disabled women. London: The Women’s Press.

This edited book, compiled by a woman with a disability, presents writings by other women who have a range of physical disabilities. The short stories and poems included in this book range in topic from issues of accessibility to abuse to equality. Disability is framed by these narratives as a social, cultural, and political issue, not only as a personal one. This is an excellent account of disability issues from a woman’s perspective. It is powerful, moving, and educating for all readers.

Keith, L. (Ed.). (1996). What happened to you? Writings by disabled women. New York: The New Press.

Lois Keith compiled collections of fiction, essays, and poetry by disabled women in her new book, What Happened to You?   Her goal is to give women with disabilities a space to express their views on such topics as abuse, equality, sexuality, prejudice, and legislation dealing with disability issues. These narratives construct disability as a cultural and political issue, not only as a personal one.

Keith, L. (2001). Take up thy bed and walk: Death, disability and cure in classic fiction for girls. New York: Routledge.

Literary analysis and critique of disability and gender in 19th- and early 20th-century children’s literature.

Kleege, G. (1999). Sight unseen. New Haven, CT: Yale University Press.

Critical and cultural analysis of both vision and blindness.  Incorporates a critical reading of stereotypical tropes of blindness in literature, film, and everyday discourse.

Krieger, L. H. (Ed.). (2003). Backlash against the ADA: Reinterpreting disability rights [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press.

This edited book examines the backlash or resistance to the Americans with Disabilities Act (ADA) and disability rights generally by federal courts, the media, and businesses. The 12 chapters of the book describe how courts have ignored the spirit and watered down the provisions of disability rights laws and how the media have misconstrued and ridiculed the ADA. The authors argue that judges, media representatives, and others do not understand or openly reject the minority group or civil rights model underlying disability rights. Although some of the chapters analyze the legal reasoning and interpretations of court cases in depth, the book is generally accessible to non-legal readers. In addition to Linda Krieger, contributors include Ruth Colker, Lennard Davis, Matthew Diller, Harlan Hahn, Vicki Laden, Wendy Parmet, Stephen Percy, Marta Russell, Kay Schriner, Gregory Schwartz, Richard Scotch, Anita Silvers, and Michael Stein.

Lane, H. (1992). The mask of benevolence: Disabling the Deaf community. New York: Vintage Books.

The reviewer wonders if Lane would be put off that this book is annotated in an information packet on Disability Studies. Throughout the book, Lane asserts that deafness is not a disability, rather it is a linguistic minority, and that the hearing (audist) establishment has a long history of oppressing members of this linguistic minority through enforced school mainstreaming, which Lane terms the “most restrictive environment.” While Lane does not dispute that other students (he discusses students with cognitive impairments and behavioral issues) might require special education services, he refutes the idea that deaf students require oral special education.

Much of what Lane presents can be generalized to many other minority groups, including people who are labeled with disabilities (e.g., obstacles that the deaf community faces are enforced by the hearing community, his discussion of colonialism and paternalism, and the role of the oppressed). Much of Lane’s focus is the hegemony of audist institutions that oppress the Deaf cultural minority. Lane attempts to unmask, critique, and fight the institutions that serve to oppress and disable deaf people.

While Lane does not critique the ADA itself, he comments upon the necessity of deaf people to participate in lobbying for its passing, but he reminds the reader that those energies instead might have been spent in lobbying for the application of the Bilingual Education Act to teaching students in American Sign Language (ASL). In particular, Lane critiques two main institutions—the education and medical establishments. The education establishment teaches deaf students from a hearing perspective, and Lane emphasizes the need for reform in the education of deaf students, for a return to how deaf education operated in the 19th century—residential schools, deaf teachers, teaching from a Deaf cultural perspective, ASL as the mode of instruction. Lane offers the Gallaudet Revolution of 1988 (Deaf President Now) as a philosophical model for deaf people taking back deaf education. Lane acknowledges the controversy surrounding residential schools, so he offers a detailed plan to reform the education of deaf students in the mainstream, comparing it to bilingual education. Lane also discusses the medical establishment’s attempt to eliminate Deaf culture by enforcing oralism onto deaf children through cochlear implants.

He discusses in depth the history, the process, and the outcomes of implanting cochlear devices. In providing the history of the FDA approval of cochlear implants, he discusses the failure of the FDA to consult deaf leaders and scholars, thus reinforcing his argument that the Deaf cultural minority is devalued and oppressed in the majority audist society.

Linneman, D. R. (2001). Idiots: Stories about mindedness and mental retardation. New York: Peter Lang.

Personal and powerful, this collection of field notes, letters, interviews, and insight challenges us all to rethink prevailing notions of intelligence. At the forefront of this book is the concept of mental retardation. Sharing his experiences and stories with four children, Linneman confronts this socially constructed concept, pointing out the limitations it imposes on children’s lives and on adults’ perception of children’s potential. While the feel of this book is anecdotal, it deals well with the questionable perpetuation of oppressive assumptions of incompetence and ideas of normalcy. Linneman deconstructs the concept of mental retardation and suggests focusing on the concept of mindedness rather than embracing unhelpful labels.

Linton, S. (1998). Claiming disability: Knowledge and identity [Cultural Front]. New York: New York University Press.

In this book, Simi Linton studies disability in relation to identity. She argues that Disability Studies must understand the meanings people make of variations in human behavior, appearance, and functioning, not simply acknowledge that these variations “exist.” Linton explores the divisions society constructs between those labeled disabled and those who are not. She avoids a medicalized discussion of disability and promotes the notion that people with disabilities need to claim their identities as disabled and as contributing members to the understanding of disability as a socio-political experience.

Linton, S. (1998). Disability Studies/Not Disability Studies. Disability & Society, 13(4), 525-540.

In this article, Simi Linton seeks to define the boundaries between what should be considered Disability Studies and what should not. For reasons that she outlines, she proposes that curriculum and research that emphasize intervention should be viewed as separate from Disability Studies, which is a socio-political-cultural examination of disability. Linton advocates a liberal arts-based model similar to that which frames women’s studies and African-American studies.

Lloyd, M. (1992). Does she boil eggs?  Towards a feminist model of disability. Disability, Handicap & Society, 7 (3), 207-221.

The author examines disability from the perspective of women with disabilities. She focuses on the social model of disability rather than a medical model and asserts that disability is another form of oppression experienced by women. She argues that disabled women have been excluded from both the women’s movement, which is oriented toward non-disabled women, and from the disability rights movement, which is oriented toward disabled men. Using the history of black feminism, the author argues for a reframing of the analysis in which to explore the simultaneous experiences of gender and disability.

Longmore, P. K. (2003). Why I burned my book and other essays on disability [American Subjects]. Philadelphia: Temple University Press.

This book is composed of a series of essays on disability scholarship and advocacy by historian Paul Longmore. The book contains an introduction and four parts. Part One, Analyses and Reconstructions, includes essays on disability history, including the League of the Physically Handicapped and the Great Depression and Activism in the 1970s and Beyond. Part Two addresses portrayals of disability in television and films. Part Three focuses on ethics and advocacy, and specifically medical decision making and physician assisted suicide. Part Four, Protests and Forecasts , includes essays on disability culture and bioethicist Peter Singer as well as an autobiographical account of experiences that lad to the title of the book.

Why I Burned My Book relates to the author’s public protest of discriminatory and unfair Social Security Administration policies that discourage disabled people from working. The book is extremely well-written and is must reading for anyone interested in Disability Studies.

Longmore, P. K., & Umansky, L. (Eds.). (2001). The new disability history: American perspectives [The History of Disability Series]. New York: New York University Press.

Co-edited by Paul K. Longmore (Professor of History and Director of the Institute on Disability at San Francisco State University) and Lauri Umansky (Associate Professor of History at Suffolk University and the author of Motherhood Reconceived), this volume, containing a collection of fourteen essays, contributes to the academic debate on the history of disability in the United States. The volume explores the complex meanings of disability as identity and cultural signifier in American history. Rejecting the historical examination of disability based on medical pathology, the contributors to this collection offer a new approach that examines social, cultural, and political factors.

The introductory chapter by the editors emphasizes that “…like people of color, people with disabilities have complex and often hidden histories; these need to be found and explained. Like gender, like race, disability must become a standard analytical tool in the historian’s tool chest.” They advocate for the need “to join the social-constructionist insights and interdisciplinary of cultural studies with solid empirical research as we analyze disability’s past.”

The fourteen essays here are arranged both chronologically and thematically. The timeline runs from the early 19th century to the present, with a majority of the pieces situated in the late 19th to early 20th centuries. These essays have been divided in three parts and the thematic groupings have been titled as (1) “Uses and Contests,” (2) “Redefinitions and Resistance,” and (3) “Images and Identities.” As explained by the editors, while these overarching themes appear in each of the historical periods in question, they seem to emerge with particular force in the 19th century, at the turn of the century, and in the mid-to-late 20th century, respectively.

Lonsdale, S. (1990). Women and disability. New York: St. Martin’s Press.

Lonsdale explores how women with physical disabilities experience the double discrimination of being both a woman and a person with a disability in society. Placing physical disability in a social and political context rather than an individual one, she uncovers how women with disabilities have been rendered invisible, how they see their self image and body image, how physical disability often leads to dependence, and how women experience a loss of civil liberties and how they face discrimination. Lonsdale also considers the ways in which these situations can change for women; specifically, how policy practices can change so women can achieve greater independence. Chapters include subjects such as the social context of disability, invisible women, self-image and sexuality, employment, financial consequences of disability, discrimination, and independence.

Luczak, R. (1997). Ten reasons why Michael and Geoff never got it on. In K. Fries (Ed.), Staring back: The disability experience from the inside out (pp. 264-277). New York: Plume.

An ironic and sad short story about a deaf man and a hearing man who, though very attracted to each other, do not become lovers.  Also in Staring Back:  Gay/lesbian poets Kenny Fries, Adrienne Rich, Tim Dlugos, and Elizabeth Clare.

Makas, E., & Schlesinger, L. (Eds). (1996). End results and starting points: Expanding the field of Disability Studies. Richardson, TX: Society for Disability Studies.

This edited book is comprised of chapters from extended abstracts of some of the presentations given at the Society for Disability Studies in Rockville, Maryland in 1994. The authors discuss numerous topics relating to Disability Studies, although the focus is almost exclusively physical disabilities. The book is divided into sections, including: Disabling and Nondisabling Images of Disability, Family Reactions to Disability , Cultural Differences in Response to Disability , Acknowledging Challenges to Self Determination , A Progress Report on the ADA , Increasing Access to Services , Designing Relevant Research , Expanding Approaches to Disability , Contact and Communication as Vehicles for Change, Self Definition and Self Support, and The Power of Community as an Agent of Social Change.

Matson, F. (1990). Walking alone and marching together: A history of the organized blind movement in the United States, 1940-1990 (1st ed.). Baltimore: National Federation of the Blind. Also available in public domain on the website of the National Federation of the Blind at: http://www.nfb.org/books/books1/wamtc.htm

Written by Professor Floyd Matson who happens to be a former student and colleague of Professor Jacobus Ten Broek (founder of the National Federation of the Blind [NFB] in 1940), this huge volume is a nice compilation and synthesization of various important speeches by the leaders of NFB and other relevant documents dealing with various core issues in the field of blindness from 1940 to 1990. The book captures the history of the NFB, the largest national advocacy organization of the blind in United States. As the author himself summarizes, “this book is the story of those fifty years of Federationism in America: the history of a unique social revolution, democratic and nonviolent but not always peaceful; the drama of an irresistible force, what some call blind force, colliding again and again with the seemingly immovable objects of supervision and superstition; and the narrative of a minority group once powerless, scattered, and impoverished coming together as a people and forging an independent movement, gaining self-expression and learning self-direction, proclaiming normality and demanding equality.”

Meekosha, H. (1998).  Body battles: Bodies, gender, and disability. In T. Shakespeare (Ed.), Disability studies reader: Social science perspectives (pp. 163-180).  London & New York, NY: Cassell.

Calls for the need for a feminist theory of embodiment complicated by insights gained from Disability Studies.

Minow, M. (1990). Making all the difference: Inclusion, exclusion, and American law. Ithaca, NY: Cornell University Press.

Martha Minow, a renowned Harvard Law School professor, takes a close look at the way our legal system operates in dealing with people on the basis of race, gender, age, ethnicity, religion, and disability. Minow confronts a number of dilemmas of difference resulting from contradictory legal strategies–strategies that either acknowledge or ignore difference when attempting to correct inequality. She explores the historical sources of ideas about difference and offers new ways of thinking about difference. Minow’s book is a brief for a new jurisprudence that recognizes and respects people’s difference.

Minow is interested in how people’s differences are shaped and misshaped by the way the law treats difference. Literary and feminist theory, as well as anthropological and social history, informs Minow’s work; she identifies the unstated assumptions about difference that tend to perpetuate discrimination through the very reforms that attempt to eliminate it.  Education for children with disabilities, bilingual education, and Native American land claims are among some of the problems Minow discusses from a fresh perspective.

Mirzoeff, N. (1995).  Framed: The deaf in the harem. In J. Terry & J. Urla (Eds.), Deviant bodies: Critical perspectives on difference in science and popular culture (pp. 49-77). Bloomington, IN: Indiana University Press.

Historical account of how deafness and difference served to shore up Western ideas about normalcy.

Mitchell, D. T., & Snyder, S. L. (Eds.). (1997). The body and physical difference: Discourses of disability [The Body, In Theory: Histories of Cultural Materialism]. Ann Arbor: University of Michigan Press.

This collection of fifteen essays explores the subject of human disability by focusing on the representations of disability in literature and art throughout history. It aims to introduce Disability Studies to the humanities and to challenge conceptions of physical and cognitive difference that strengthen definitions of “normal” based on stigmatization of the “other.” In outing discourses of disability that perpetuate the dominant ideology of ableism, the contributors call for new conceptions of the disabled body in the arts and the rightful place of Disability Studies within the humanities. This compelling volume is split into two sections that break down the political economy of representations of disability: Part 1, Representations in History and Part 2, A History of Representations . Authors include Martha Edwards, Martin S. Pernick, Paul K. Longmore, Felicity A. Nussbaum, Jan Gordon, and Rosemarie Garland Thomson.

Morris, J. (1993). Feminism and disability. Feminist Review, 43 , 57-70.

The author discusses the absence of women with disabilities from feminist scholarship and feminist theory. Morris claims that a significant failure of feminism is that it fails to incorporate disabled women into its politics, theory, research, and methodology. She argues that feminist theory would benefit from the inclusion of the concerns and experiences of disabled women, and that feminist theory and feminist methodology have major contributions to make to disability research. The author discusses her anger and frustration with feminism in two ways: first, that disability is generally invisible from feminism’s mainstream agenda, and second, that when disability is a subject of research by feminists, the researchers objectify disabled people so that the research is alienated from their experiences rather than attempting to understand the experiences of disabled women.

Morris, J. (1992). Personal and political: A feminist perspective on researching physical disability. Disability, Handicap & Society, 7 (2), 157-166.

Morris asserts that feminist theory and methodology have largely ignored and alienated women with disabilities and the research conducted by disabled people. She argues that feminist theory needs to take up the challenge of applying its principles to the study of disability and to examine the lives of disabled women. In turn, Morris feels that disabled women and disability research in general has much to learn from feminist methodology; mainly the principle of making the personal political. In addition, Morris outlines the role she sees for nondisabled researchers interested in researching disability-related issues. She views the role of the nondisabled researcher as an ally, and calls on nondisabled as well as disabled researchers to continue to study the ways in which the nondisabled society oppresses its members with disabilities. Lastly, she argues that disability research is of great importance in the general understanding of the perpetuation of inequalities in society.

Morris, J. (1998). Pride against prejudice: Transforming attitudes to disabilities (Reprint ed.). North Pomfret, VT: Trafalgar Square.

Morris, a disabled feminist and activist, provides a feminist analysis to the study of the experiences of women with disabilities. Basing her arguments on the feminist principle that the personal is political, Morris eloquently challenges such issues as prejudice, abortion, and the notion that people with disabilities lead lives that are not worth living. She further discusses the history of people with disabilities in institutions and under the Nazi regime. Morris also examines the meaning of disability in Western culture and the meanings of history of segregation, dependence, and an emerging independence of people with disabilities. Pride Against Prejudice is a commentary on political activism and rights, and stresses the need to fight back against the prejudice, stereotypes, and oppression of an ableist culture.

Nagler, M. (Ed.). (1993). Perspectives on disability (2nd ed.). Palo Alto, CA: Health Markets Research.

In this second edition edited by Mark Nagler, he once again explores the meaning of disability in our society. Using an interdisciplinary perspective, he offers articles by sociologists, psychologists, therapists, and others to explore the ways in which disability is constructed and understood. The book includes a foreword by Evan Kemp Jr. and an introduction by Nagler. He divides the book into the following sections: “What It Means To Be Disabled,” “Society and Disability,” “The Family and Disability,” “Sexuality and Disability,” “Medical and Psychological Issues and Disability,” “Education, Employment, Social Planning and Disability,” and “Legal And Ethical Issues and Disability.” The selections for this second edition are good, but there are not many articles relating to people with developmental disabilities. This is the one main weakness of this text.

Nielsen, K. (2001). Helen Keller and the politics of civic fitness.  In P. K. Longmore & L. Umansky (Eds.), The new disability history: American perspectives (pp. 268-290). New York: New York University Press.

Explores why, despite her affiliation with a range of radical social and political identities, Helen Keller failed to bring such politicized understandings to the topic of disability or blindness.

O’Brien, R. (2001). Crippled justice: The history of modern disability policy in the workplace. Chicago: University of Chicago Press.

Inspired by the lack of change and negative reaction after the passage of the Americans with Disabilities Act of 1990 (ADA), O’Brien traces the history of people with disabilities in the workplace from World War II to the present. From normalization and vocational rehabilitation to a lack of support for rights-oriented disability policy, she identifies the roots of a perpetuated inequality at the workplace in society’s attitudes toward disability. This book outs societal resistance to disability rights by examining the social and political implications of the historical debate for civil rights and its continuation today. Central to this current debate is the state of the ADA, and O’Brien clearly describes the dangers of where we are so that we can work to overcome these barriers in future successes.

O’Connor, E. (2000). Raw material: Producing pathology in Victorian culture. Durham, NC: Duke University Press.

Focuses on the cultural production pathology in Victorian culture.  Includes chapters on Victorian beliefs about the causes of breast cancer, as well as chapters on masculinities and prosthetic technologies.

Oliver, M. (1990). The politics of disablement. London: The MacMillan Press.

Michael Oliver, a renowned British disability rights theoretician, gives voice in this book to the challenge disabled people have hurled at the dominant ideology that devalues and demeans disability as a medical condition. Oliver argues that disability is a social problem, and that society needs to change how it conceptualizes and deals with disability. He takes a look at the individualized and medicalized views of disability and describes how they have been produced in a capitalist society. Oliver also analyzes the possibilities of achieving political change in the capitalism of the late 20th century and how the emerging disability rights movement has a role in effectuating change.

Oliver, M. (1996). Understanding disability: From theory to practice.   New York: Palgrave.

Michael Oliver, the preeminent British disability rights theoretician, engages in a wide-ranging collection of essays with recent and perennial problems involving disability, citizenship and community care, social policy and welfare, education, rehabilitation, and the politics of new social movements. Reflecting on his own life as a disabled person and theorizing about the broader social, economic, and political aspects of disability, Oliver attempts to deepen and broaden our understanding of disability.

The book consists of eleven essays and represents Oliver’s vision of moving from theory to practice in various contexts such as welfare, education, rehabilitation, and politics. Oliver seeks to apply a materialist analysis to disability issues, rooting his theoretical insights in the current realities of society that impact on disabled people.

Pelka, F. (1997). The ABC-CLIO companion to the disability rights movement. Santa Barbara, CA: ABC-CLIO, Inc.

This text is a general introduction to the disability rights movement and the people and court cases that support or challenge it. It includes entries on such people as Ed Roberts and Judy Heumann. The book is organized as a dictionary, and has references from every aspect of the disability rights movement, from court cases to famous people, to historical events and disability culture. It also includes a chronology, beginning with the founding of the American School for the Deaf in 1817 and concluding in 1996.

Pernick, M. S. (1996). The black stork: Eugenics and the death of “defective” babies in American medicine and motion pictures since 1915. Oxford and New York: Oxford University Press, Inc.

Based on extensive research, this text uses the story of a Chicago surgeon who allowed the death of the infants he diagnosed as so-called “defectives” in the 1910s. The case was well publicized through the print and film media. The author goes into depth to analyze the broader questions on how eugenics became linked with euthanasia and social prejudice, how medicine influences modern culture, and how mass culture redefined key medical concepts. As the author summarizes in the first chapter, the book explains: “’Mass culture,’ which includes any production made for a mass audience whether or not it was demonstrably ‘popular’ in origin, constituted a crucial battleground on which professionals, popularizers, journalists, censors,   and audiences struggled to shape the meanings of ‘eugenics’ and ‘euthanasia’ and to define the connection between them.” This text is a great source to understand the eugenics movement and the role of film media in the pre-Nazi era since the 1910s, particularly for those in biomedical ethics, medical care, disability rights activists, and film enthusiasts.

Reinders, H. (2000). The future of the disabled in liberal society: An ethical analysis. Notre Dame, IN: University of Notre Dame Press.

Hans Reinders, Professor of Ethics and Mental Disability at the Vrije Universiteit in Amsterdam, shows the meaning of life and the place of the disabled person cannot adequately be understood within liberal society. As Reinders argues in his book, liberal society gives us two conflicting messages: on the one hand, it encourages prenatal diagnosis and selective abortion, but on the other hand it breaks down barriers so as to help improve the lives of people with disabilities. This is a philosophical treatise in three parts in which Reinders shifts the discussion from the medical paradigm of disability to the paradigm of normalization where potential for life and love is emphasized and valued. Given the Human Genome Project that seeks to uncover the billions of genes that regulate human life and that seeks to give humankind the power to correct physical and mental “anomalies,” Reinders raises very interesting philosophical questions about liberalism, morality, genetics, reproduction, dependency and responsibility for others.

Rothman, D. J., & Rothman, S. M. (1984). The Willowbrook wars: A decade of struggle for social justice. New York: Harper & Row, Publishers.

Documents events that occurred after court-ordered reforms of Willowbrook, an institution for people labeled mentally retarded. Rothman and Rothman followed events at Willowbrook from 1975 to 1982 in an attempt to understand social reform and its implications for people being deinstitutionalized.

Russell, M. (1998). Beyond ramps: Disability at the end of the social contract. Monroe, ME: Common Courage Press.

Written in the immediate post-ADA era in the second half of the 1990s, through a radical perspective based on the political economy approach, this book vividly exposes the evils of a capitalistic and charity model and its impact on the marginalized people such as the poor, the elderly, and particularly people who are disabled. The author questions the rhetoric of civil rights as enshrined under ADA in the absence of concrete affirmative action to bring about a significant change in the lives of disabled people in United States. She makes reference to the models of social policies in a country like Sweden to cite an example of greater social justice in regard to the treatment of the disabled.

Schlesinger, L., & Taub, D. E. (Eds.). (2003). Instructional materials for sociology and Disability Studies. Washington, DC: ASA Teaching Resources Center.

This packet includes a broad array of information related to teaching sociology and Disability Studies. The information is organized into the following sections: Editors’ Introduction; Introductory Articles; Disability Studies: Interdisciplinary and International Perspectives , including articles on Disability Studies, syllabi for Disability Studies courses, syllabi for other interdisciplinary courses, and syllabi for courses taught outside the United States; Sociology of Disability Courses , including syllabi for sociology of disability courses and syllabi for courses on social psychology and disability; Sociology and Disability Courses, including a syllabus for a course on the sociology of Deafness and Deaf people, syllabi for courses on health and disability, syllabi for courses on gender and disability, syllabi for courses on social policy and disability, and syllabi for courses on representations of disability in literature and the arts; Disability Studies in General Sociology Courses , including articles on the inclusion of disability and syllabi for general sociology courses; Exercises and Assignments , including book reviews, exercises, assignments that focus on writing, media, film, and videos, and other projects; Additional Resources , including articles, recent publications and bibliographies, journals and magazines, and films, music and art.

Scotch, R. K. (2001). From good will to civil rights: Transforming federal disability policy (2nd ed.) [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

First published in 1984, this book was a landmark contribution to Disability Studies at a time when the disability rights movement was gaining momentum in the United States. In its first edition (1984), the author traced the changes in federal disability policy, focusing on the development and implementation of Section 504 of the Rehabilitation Act of 1973. The second edition (published in 2001) includes an added epilogue which briefly touches upon the effects and disappointments associated with the Americans with Disabilities Act, passed in 1990, in the context of the continuing movement to secure full civil rights for people with disabilities in the 1990s.

Shakespeare, T. (Ed.). (1998). The disability reader: Social science perspectives. London and New York: Cassell.

This reader offers to the student or researcher new to the field a broad introduction to Disability Studies from a social science perspective. The volume focuses on Disability Studies as it has evolved in Britain. In the “Introduction,” the editor describes the book as promoting a dialogue between new disability researchers, the political disability community, and traditional academic approaches. The book is composed of three parts. Part One contains two articles that provide a background to the origins and development of Disability Studies. Part Two attempts to cover the range of approaches within contemporary Disability Studies, including sociology, education, geography, and cultural studies. The final part, which contains five chapters, discusses various controversies and directions for the field.  The editor does not claim this collection to be either comprehensive or exhaustive, but rather to offer an “introduction to the types of intellectual and political engagements which are taking place…”

Shakespeare, T., Gillespie-Sells, K., & Davies, D. (1996). The sexual politics of disability: Untold desires. London: Cassell Publications.

One of the authors of this British book is Kathy Gillespie-Sells, a lesbian with a disability. She also runs Regard, an organization and campaigning group for lesbians and gay men with disabilities. Regard’s email address is regard@dircon.co.uk . Chapter 6, “Double the Trouble?”, is about being gay or lesbian and disabled. Lesbian, gay, and bisexual accounts occur elsewhere in the book, but this chapter deals exclusively with their issues, including community access, prejudice against disability, choosing a living situation, and practical issues such as how one can meet people when he or she is accompanied by personal assistants.

Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Times Books.

This well-written book presenting a nice account of the disability rights movement was published soon after the passing of the ADA. The author is a well-known journalist who was covering social issues for the U.S. News & World Report at the time of the writing of this book. It is a product of the author’s research of five years which involved over 2,000 interviews with hundreds of disabled people. Written in People First language and based on the “minority model” approach, the book vividly and succinctly covers the disability rights movement primarily since the late 1960s onward leading to the passing of the Rehabilitation Act of 1973, the Education for All Handicapped Children Act (1975) and culminating in the passing of the ADA.

Shildrick, M., & Price, J. (1999). Breaking the boundaries of the broken body. In J. Price & M. Shildrick (Eds.), Feminist theory and the body: A reader (pp. 432-444). London and New York: Routledge.

Argues for a radical politics of disability that conceives disability as a transgressive category that “demands that we rethink not simply the boundaries of the body, but equally those between sameness and difference, and indeed self and other” (p. 442).

Smith, J. D. (1985). Minds made feeble: The myth and legacy of the Kallikaks. Austin, TX: PRO-ED.

Debunking Goddard’s infamous Kallikak study that purported to show the hereditary transmission of “feeblemindedness,” Smith traces members of the Kallikak family and demonstrates how facts were twisted by the eugenicists to prove their theories.

Snyder, S. L., Brueggemann, B. J., & Garland-Thomson, R. (Eds.). (2002). Disability Studies: Enabling the humanities. New York: The Modern Language Association of America.

This collection of 25 essays builds on earlier volumes and claims an overdue space for Disability Studies within the humanities. Stressing that disability remains an unspoken topic or stigmatized subject, this collection defines the “universalization of disability across the humanities” and both the need and benefits of studying disability as a subject of critical inquiry and category of critical analysis. It demonstrates how to integrate ideas and representations of disability into all teaching and scholarship, as well as people with disabilities into academia. The essays then become models of disability finally being recognized as an important aspect of diversity and tied to larger social justice values, worthy of the highest scholarship in literary and language studies.

Stiker, H. (1999). A history of disability (W. Sayers, Trans.) [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press. (Original work published 1987).

Stiker offers a framework for analyzing disability across the ages in this thorough and passionate work. Focusing on cultural reactions to disability from ancient times to the present, he examines the societal assumption that sameness and conformity are ideal, thus preventing the celebration of diversity. He reflects on how attitudes toward disability reveal the true nature of societies and offers plenty of examples suggesting that difference is still demonized, disability stigmatized. He proposes a “discourse of difference” that would allow society to finally achieve its potential and humanity by embracing all members. The book takes on a conversational style but is thorough. It includes a foreword by David T. Mitchell and the chapters The Bible and Disability: The Cult of God; Western Antiquity: The Fear of the Gods ; The System of Charity ; The Classical Centuries: The Chill ; and The Birth of Rehabilitation .

Taylor, S. J., & Bogdan, R. (1989). On accepting relationships between people with mental retardation and nondisabled people: Towards an understanding of acceptance. Disability, Handicap & Society, 4(1), 21-36.

The authors discuss a “sociology of acceptance” as a theoretical model for understanding relationships between people without disabilities and people with mental retardation. They state that family, religious commitment, humanitarian sentiments, and feelings of friendship are all sentiments expressed by nondisabled people who have relationships with people with mental retardation.

Thompson, K., & Andrezejewski, J. (1989). Why can’t Sharon Kowalski come home? Denver, CO: Spinsters Ink.

This book by Karen Thompson, a woman whose lover Sharon Kowalski was injured in a car accident, tells the story of her fight to have authority over Sharon’s care and living situation after her brain injury. Kowalski’s parents, to whom she had not yet come out, refused to acknowledge their relationship and took steps to prevent Thompson from visiting or having any say in their daughter’s care. Their low expectations of their disabled daughter and of the rehabilitation system, combined with their disbelief and homophobia, resulted in their daughter being warehoused without the opportunity to see many of the people she loved. The book was published before Thompson successfully obtained guardianship. A powerful and descriptive narrative.

Thomson, R. G. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press.

This is a key work in the field of literary criticism and Disability Studies. It examines literary and cultural representations of physical disability, framing disability within a cultural and minority context rather than a medical one. The book contains three parts. Part I, Politicizing Bodily Differences , provides an introduction as well as a theoretical framework.  Part II, Constructing Disabled Figures: Cultural and Literary Sites, examines American freak shows, as well as representations of disability in literature, including Harriet Beecher Stowe, Toni Morrison, and Audre Lorde. In a brief conclusion, the author summarizes her intent in this writing “to critique the politics of appearance that governs our interpretations of physical difference, to suggest that disability requires accommodation rather than compensation, and to shift our conception of disability from pathology to identity.”

Thomson, R. G. (2001).  Seeing the disabled: Visual rhetorics of disability in popular photography. In P. K. Longmore & L. Umansky (Eds.), The new disability history: American perspectives (pp. 335-374). New York: New York University Press.

Illustrates taxonomy of four visual rhetorics employed in the visual representation of disability in popular photography.

Tremain, S. (Ed.). (1996). Pushing the limits: Disabled dykes produce culture. London: Women’s Press.

This anthology begins with “Introduction: We’re here. We’re disabled and queer. Get used to it,” by Shelley Tremain, and is divided into seven sections: searching; becoming; loving; positioning; enduring; not surrendering; and testifying, with five to twelve pieces by disabled dykes in each section. This sensitive, intelligent, and questioning collection addresses topics such as the power and importance of language, the misuses of power, the corruption and convenience that governs the medical profession, and the passive disinterest of non-disabled sisters. The selections include essays, poetry, stories, and personal narratives.

Trent, J. W. (1994). Inventing the feeble mind: A history of mental retardation in the United States [Medicine in Society]. Berkeley: University of California Press.

James W. Trent, Jr. is an Associate Professor of Sociology and Social Work at Southern Illinois University at Edwardsville and also happens to be the 1995 winner of the Hervey B. Wilbur Award of the American Association on Mental Retardation. In this well documented study, Trent uses public documents, private letters, investigative reports, and rare photographs to present an interesting historical analysis of mental retardation and the evolution of the institutional system for people labeled mentally retarded in industrialized American society. The book goes into depth about the process of institutional treatment of people labeled intellectually disabled in the United States over the past 150 years and vividly traces the practices leading to an institutional system. It is a great contribution to the social history of the United States and an excellent source for students, researchers, human-services professionals, as well as historians engaged in the area of intellectual disabilities.

Vernon, A. (1998). Multiple oppression and the disabled people’s movement. In T. Shakespeare (Ed.), The disability reader: Social science perspectives (pp. 201-210).  London & New York: Cassell.

Advocates for an analysis of simultaneous oppressions of race, gender, sexuality, age, and class in Disability Studies scholarship and activism.

Wendell, S. (1999).  Feminism, disability, and transcendence of the body.  In J. Price & M. Shildrick (Eds.), Feminist theory and the body: A reader (pp. 324-334). London and New York: Routledge.

Critiques contemporary feminist theorizing around the body as uninformed by the lived experience of women with disabilities and argues for a rethinking of the possibilities for strategic transcendence of the body in ways that do not necessarily lead to alienation.

Wendell, S. (1997). Toward a feminist theory of disability. In L. J. Davis (Ed.), The Disability Studies reader (pp. 260-278). New York: Routledge.

The author argues that disability is not a “biological given,” rather it is a social construction of biological reality (like gender) and because of this, the fact that 16% of women have disabilities, and that feminist thinkers have raised the most radical issues concerning cultural attitudes to the body, a feminist theory of disability is needed. Wendell argues that those with disabilities are constructed as “the other” and because of this are seen as failing to control their bodies (control of our bodies is demanded by society) and as symbolizing the threat of pain, limitation, dependency, and death. She calls for people with disabilities and their knowledge and experience with their bodies to be fully integrated into society, and concludes that in this way bodies would be liberated.

Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. London and New York: Routledge.

In The Rejected Body, Susan Wendell, a woman with Chronic Fatigue Syndrome, draws parallels between her own experiences with illness to feminist theory and Disability Studies. She argues (as many others have), that feminist theory has neglected to incorporate the perspectives and experiences of women with disabilities, and that these perspectives must be included in future discussions of feminist ethics, the body, and the social critique of the medical model. Wendell also examines how cultural attitudes about the body contribute to disability oppression and society’s unwillingness to accept different types of bodies.

Wolfensberger, W. (1975). The origin and nature of our institutional models (Rev. ed.). Syracuse, NY: Human Policy Press.

This is an analysis of the development of and growth in institutions in the 19th and 20th centuries. The book examines institutionalization in terms of the ideas and philosophies of leaders in the field of mental retardation. This book contains the foundations for Wolfensberger’s influential writings about “normalization.”

Autobiographies/Personal Narratives

This section highlights autobiographies and personal narratives of people with disabilities.

Barron, J., & Barron, S. (1992). There’s a boy in here. New York: Simon & Schuster.

There’s A Boy In Here tells two stories: that of the mother of a child with autism, and that of the child. The book is mainly told from the mother’s point of view, recounting her gradual recognition that something was “wrong” with her baby. Judy Barron describes in great detail her son Sean’s difficult behaviors, his tantrums, his compulsions and fixation, and his seeming indifference to his family, and her own tumultuous efforts to simultaneously understand his behaviors and help him diminish them. Sean then retells some of these parent accounts with his own memories of these events; in particular, he emphasizes how these fixations and behaviors were not only pleasurable for him, but were also an attempt to regulate and control his environment and lessen the possibilities of failure for him. Judy chronicles the family’s treatment at the hands of psychology and medical professionals—Judy is repeatedly addressed as “Mother,” not by her own name, and Sean’s autism is blamed on her—and Sean writes of his fear and distrust of these professionals. Except for nine months he spent in a residential school, Sean was fully included in general education throughout his schooling, and Sean provides a detailed perspective of his classroom experiences. The cover of the book states that it tells “the story of his emergence from autism” and the narrative hinges upon Sean’s realization that he must gain control of his compulsions, his fears, and his behaviors in order to “breakthrough” and “overcome autism.” While the account provides the perspectives of both the parent and the autistic person, the narrative ultimately reinforces the idea that autism is something to be cured, to be overcome, to be vanquished.

Blackman, L. (1999). Lucy’s story: Autism and other adventures. Mt. Ommaney, Australia: Book in Hand.

In her autobiography, Lucy Blackman gives a very detailed insider’s view of autism before and after she learned to communicate through typing.  Blackman adeptly discusses the social construction of speech and how her lack of a method of communication allowed the process of the experience of receiving and speaking to pass her by in her early years.  In her later years, she developed a friendship with an Australian writer who became her mentor in her burgeoning desire to be a writer.  This book, as well as being a fascinating autobiographical narrative, is essential reading on the aspects of sensory discrimination, issues of visual perception, and discussion of the rituals associated with autism.  Blackman also provides an in depth discussion of her school placements, what worked, what did not work in her school settings, and how her family relationships bridged both her school and communication gaps.  A majority of the book provides a comprehensive discussion of the method of facilitated communication (FC).  Blackman goes into meticulous detail as to how she came to learn FC and she takes text from when she first acquired the method and analyzes it to show the process of communication.  In this discussion she provides her own explanation for message passing errors (language keys, personal communication perceptions, vision issues), and discusses how she used the method in high school—what types of classroom situations and student-teacher/home communication methods were successful and not.  Blackman also gives the reader an honest and sometimes humorous account of her relationship with her mother and sisters.

Bérubé, M. (1996). Life as we know it:  A father, family, and an exceptional child. New York: Vintage Books.

This remarkable book is a father’s story of the life of his 4-year-old son James, who has Down syndrome. It is far more than just a personal memoir of his son’s birth and young life. In following the developmental stages, social experiences, and involvement with social services that James passes through, Bérubé explores their social implications, including such topics as IQ testing, the politics of education, disability law, social services, health care, and entitlements. Implicit in these discussions are not just his own family’s experiences in these realms, but also concepts such as social justice, what it means to be human, and what kind of society is valued and by what means we determine this value.

Callahan, J. (1989). Don’t worry, he won’t get far on foot. New York: Vintage Books.

Equal parts laugh-out-loud funny and angering to the point of disbelief, this is John Callahan’s story told in his own words and pictures. John is a cartoonist whose work not only challenges but attacks and explodes social norms. He is also a quadriplegic and recovering alcoholic who has suffered through abusive support providers, endured battles with the welfare system, maintained his vicious sense of humor, and emerged from some difficult times happy, successful, and determined to change prevailing attitudes about disability, potential, normalcy, and employment. He shares all of his experiences and lessons learned in a straightforward way that does not allow pity or ego to enter the picture. He describes his own brand of faith and sheds some light on our collective humanity.

Fries, K. (1997). Body, remember. New York: Plume.

In this memoir, Kenny Fries explores his life and experiences with his disability. Having been born with congenital deformities that affected the lower part of his body, Fries searches medical records, talks with family and friends, and examines past relationships in order to better understand his disability. In addition to an understanding of his physical body, Fries also explores his sexuality and personal relationships. This is a memoir about disability, but it is also about the discovery and understanding of his identity.

Grealy, L. (1994). Autobiography of a face. New York: HarperCollins.

Autobiography Of A Face is Lucy Grealy’s compelling account of her experience with childhood cancer. The narrative’s starting point of view is that of Grealy as a child, from her early diagnosis at age nine, replete with the singular distinction of being sick and thus being special and not having to turn in a book report, through surgery that removed half of her jaw, almost three years of radiation and chemotherapy, to her growing awareness that she is alone and experientially set apart from her family, her classmates, and her physicians. The book chronicles her hospital and school experiences (an encounter with her junior high guidance counselor is particularly poignant) as well as her internal struggle to eschew the mirrors that reflect difference, what she gradually realizes is, by society’s standards, her “ugliness” or to embrace the mirrors that reflect liberation from image and instead reflect the face of the self. Many issues converge in this account, including family attitudes (bravery, not crying, and minimizing expressing pain are valued), the cruelty of children, the medicalization of difference (Grealy underwent 15 years of surgery to “improve” her appearance), beauty and Beauty, and self-awareness and freedom from the dictates of society.

Grandin, T. (1995). Thinking in pictures: And other reports from my life. New York: Bantam Doubleday Dell Publishers Groups, Inc.

Thinking In Pictures is about the childhood and development of Temple Grandin, a woman with autism. She likens herself to the robotic character, Data, on the science fiction television program, Star Trek: The Next Generation . She says words are like a second language to her, noting that she thinks primarily in images. Grandin, who holds a Ph.D. in animal science and has designed equipment that revolutionized the livestock industry, proposes that genius and autism may sometimes be closely related.

Hale, M .J. G., & Hale, Jr., C. M. (1999). “I had no means to shout.” Bloomington, IN: 1st Books.

Charles Hale, a man with autism, discovered the communication technique of facilitated communication (FC) when he was 36 years old, and this book chronicles his life before and after he began to use FC through both Charles’ and his mother’s narratives. When he was a child, Hale was diagnosed as “trainably mentally retarded,” and it was not until he began using FC that he discovered he was autistic. The book opens with a history and discussion of the facilitated communication method and the controversy surrounding the method. While the book is primarily written by Mary Jane, Charles’ comments are liberally spread throughout the text. While some of Charles’ narrative has been edited for easier reading, the authors make a conscious choice to leave many of Charles’ passages as originally typed, so that reader can see the clear intended meaning through errors made while using the method. The narrative provides, in Charles’ voice, a fascinating and detailed insiders’ perspective to what autism feels like, how Charles’ apraxia and dyspraxia have affected his life and his communication, and how FC allows Charles not to emerge from autism, but rather, to express himself “as the intelligent, cognizant man he really is.”

Hockenberry, J. (1995). Moving violations: War zones, wheelchairs, and declarations of independence. New York: Hyperion.

Moving Violations is an honest and often humorous account of Hockenberry’s life as a man with a disability. He takes the reader on a journey in which he reflects upon the events in his life, from the accident that, at age 19, caused a spinal cord injury, to his work as a nationally renown broadcast journalist. He does not flinch at talking about the personal aspects of disability. And he shares the adventures of his career, such as riding a mule up a mountainside with Kurdish refugees who were being driven from their land by the Iraqis after Desert Storm. Hockenberry also explains how his disability, rather than limiting him, is a window through which he frames his view of the world–how it expands his gaze and gives him insight that defines who he is and what he does.

Kennedy, M. J. (1994, February). The disability blanket. Mental Retardation, 32(1), 74-76.

In this article, Michael Kennedy discusses his experiences being labeled under the “blanket term disabled.” First, he talks about ways that privacy is invaded under the disability blanket. This includes the degrading experience of having to attend meetings and deal with reams of paperwork related to other people’s ideas about goals for you. Second, he notes that under the disability blanket you are always being evaluated, but are hardly ever asked to evaluate the services you get. Third, everything you do must be part of a “program.” He concludes by stating, “If we could get out from under the disability blanket, the world would look different for us. We’d still get services but they wouldn’t be programs…Professionals would treat us like they would want to be treated…We’d hear about more of our options, and we’d get support in choosing what best fit our wants and needs.”

Lubchenco, L. O., & Crocker, A. C. (1997). Bus girl: Poems by Gretchen Josephson. Cambridge, MA: Brookline Books.

This book consists of 25 poems written by Gretchen Josephson, a woman with Down syndrome. She started writing poetry while still in her teens, when she began a job as a bus girl at a restaurant. Her poetry chronicles her life experiences with family, friends, love, and other areas of life. The editors have divided her poetry into sections, which include Bus Girl , Love for Always, Vacations and Travel , Family, Death and Greed , Faith, and Other Poems . Unlike other artistic works such as Musn’t Grumble edited by Lois Keith, Josephson does not write about disability. Instead, she simply creates poetry about her life.

Mairs, N. (1997). Waist-high in the world: A life among the disabled. Boston: Beacon Press.

Nancy Mairs, a brilliant essayist and poet who has authored six previous books, reflects upon her experiences as a woman with multiple sclerosis in Waist-High In The World.  She discusses such topics as adjusting to change, reconciling body image, experiencing sexuality and pleasure, and seeking equality and justice. She also probes other disability issues, such as assisted suicide and selective abortion, and she revisits an article she once wrote for Glamour magazine that focused on young people with disabilities.

Mason, M. (2000). Incurably human. London: Working Press.

Simultaneously personal and philosophical, this book is both a celebration of and call for inclusive communities and schools. Micheline Mason shares some of her experiences growing up and living with a disability in London. She challenges the dominant ideology of the medical model that suggests that she and others with disabilities are broken and need to be fixed, stressing that she is fully human as she is and does not need or desire a cure. The book chronicles her personal journey from experiencing segregation and discrimination to living a full life, fighting prejudice, and working for inclusive societies. She has dedicated the book to Marsha Forest, Jack Pearpoint, Judith Snow, John O’Brien, and Herb Lovett who “flew in as a team, crashed through our British reserve and, in their generosity, gave us the language and the tools of inclusion.” The book is divided into four sections: Exclusion Harms Everyone, The Inclusion Movement , Inclusive Education , Glimpses of a Possible Future.

Mukhopadhyay, T. R. (2000). Beyond the silence: My life, the world and autism. London: The National Autistic Society.

This work is an autobiographical narration of a young poet who happens to be an autistic child and it includes a collection of his selected poems with a foreword by Lorna Wing. Rajarshi Mukhopadhyay, known as Tito, wrote this fascinating narration before he was 12 years old in July 2000. Tito was also a subject of one hour-long BBC documentary and various newspaper articles including one published in the New York Times . This work represents a realistic presentation of what kind of struggle he and his parents had to go through during his early childhood in his native country (India) where intellectual disabilities like autism are hardly known or recognized. As pointed out in the editor’s note, “To retain the integrity of Tito’s writing, very little has been changed. Changes have only been made to ensure clarity, and [ ] have been used where information has been added.” The work provides a vivid description of the experience of living with autism in a country like India and Tito’s thoughts about the meaning of life presented in a highly philosophical and poetic manner. The book is divided into four sections. The initial two sections present Tito’s autobiographical narration while the remaining two sections present a collection of his selected poems.

Murphy, R. F. (1987). The body silent: An anthropologist embarks on the most challenging journey of his life: Into the world of the disabled. London and New York: W.W. Norton.

Robert Murphy, an anthropologist by trade, eloquently and honestly describes how paralysis–and all disability–affects identity and interaction with others based on their reactions to disability. This book is his anthropological field trip to the world of disability, detailing his experiences and thoughts before, during, and after he becomes paralyzed during his 40s. The journey is compelling in itself and also offers a backdrop and source for inquiry into notions of stigmatization, independence/dependence, physical condition, and normalcy. This is a powerful book in which Murphy not only shares his personal story but deals with and challenges the ableism and medical model of disability he endures once he becomes disabled himself. It is split into three sections of three chapters each: I. In the Beginning (Signs and Symptoms, The Road to Entropy, The Return) II. Body, Self, and Society (The Damaged Self, Encounters, The Struggle for Autonomy) III. On Living (The Deepening Silence, Love and Dependency, There’s No Cure for Life).

Nolan, C. (1987). Under the eye of the clock. New York: Arcade Publishing, Inc.

Christopher Nolan is an award-winning Irish poet and novelist who has cerebral palsy, uses a wheelchair, and writes with a stick attached to his forehead while someone cups his chin for stability. Under the Eye of the Clock is his autobiography (told as the story of Joseph Meehan), a lyrical and metaphorical account of his family, schooling, faith, and emergence as a celebrated poet. Joseph communicates with eye movements, facial expressions, and body language that his family and friends decode, and Joseph used his language to tell his family and teachers at the Central Remedial Clinic School that he wanted to attend the local comprehensive school. While his family is completely supportive and respects Joseph’s autonomy, the board repeatedly turns down Joseph’s application, but Joseph eventually is accepted at the comprehensive school and finishes his primary education there. Nolan recounts his friendships at school (including his and his mates’ adventures with smoking) and how he was fully included in school trips and activities. Nolan also tells of his struggle to communicate outside the realm of gestures, through intense practice and training at typing.  Typing releases the poet within, and Joseph/Nolan writes his first book of poetry at age 15. While his accomplishments are often framed in the International Year of Disabled People, distinguished writers such as Brendan Kennelly recognize Nolan as a writer and poet outside the framework of disability.

Panzarino, C. (1994). The me in the mirror. Seattle: Seal Press.

Written by writer, disability activist, and artist Connie Panzarino, The Me In The Mirror is an autobiography of the life of this amazing woman.  Born with Spinal Muscular Atrophy Type III, a rare disease, Panzarino describes her life as one of struggles and triumphs, and tells the stories of her relationships with her family, friends, lovers, her turn to lesbianism, and of her years of pioneering work in the disability rights movement.  This book is a must read for anyone interested in understanding the experiences of women with physical disabilities.

Sienkiewicz-Mercer, R., & Kaplan, S. B. (1989). I raise my eyes to say yes. New York: Avon Books.

This is Ruth Sienkiewicz-Mercer’s powerful account, written with the assistance of Steven Kaplan, of her incarceration in an institution for people labeled mentally retarded.  She vividly describes the abuse and neglect she experienced in the institution, and the isolation from family and community.  However, the book ends with her description of her successful struggle to gain her freedom, shatter stereotypes, and build a life in the community.

Sinclair, J. (1993). Don’t mourn for us. Our Voice, 1 (3). Syracuse, NY: Autism Network International.

This article is addressed to parents of autistic children. The author begins with a discussion of parents’ grief over having an autistic child. While some amount of grief is natural, he emphasizes that continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child. He urges parents to make radical changes in their perceptions of what autism means: (1) autism is not an appendage, it isn’t something that a person has or is trapped inside; (2) autism is not an impenetrable wall, though relating to an autistic person takes more work and openness to different ways of relating and understandings about relating to one another; and (3) autism is not death, you didn’t lose a child to autism. In conclusion, he urges parents not to mourn for what never was, but to join with their children in an exploration of what is.

Trueman, T. (2000). Stuck in neutral. New York: Harper Collins Publishers.

While this book is fiction, and closer to juvenile/young adult fiction at that, it reads as a first person account. Terry Trueman’s narrator is 14-year-old Shawn McDaniel who has cerebral palsy, cannot control any of his muscles, and does not speak. The story revolves around his father’s belief that he must kill Shawn to “put him out of his misery” despite the obviously positive relationships between Shawn and the rest of his family. Thus, the narration becomes all of Shawn’s thoughts that remain unknown to those around him, and even questioned by some. The book quickly delves in and out of family issues, notions of mental retardation, and quality of life questions. Most importantly, it stresses the importance of making the least dangerous assumption and offers one example of what could be going on when we just don’t know for sure.

Williams, D. (1992). Nobody, nowhere: The extraordinary autobiography of an autistic. New York: Avon Books.

Donna Williams, who was diagnosed with autism when in her mid 20s, wrote Nobody, Nowhere in an attempt to understand herself and to explore how she fit into the world around her. She candidly describes the teasing and mistreatment she experienced at the hands of her family and her ability to use role-playing to interact with others. Williams said of her book, “This is a story of two battles, a battle to keep out ‘the world’ and a battle to join it.  I have, throughout my private war, been a she, a you, a Donna, and finally, an I.”

Williams, D. (1994). Somebody, somewhere: Breaking free from the world of autism. New York: Times Books.

This autobiography by Donna Williams poignantly and defiantly illustrates her life and struggle with autism. She powerfully articulates her “awakening to the world” and how she fought for others to do the same.  She presents her perspective of autism and reminds readers that it is crucial that they seek to understand her perspective and the perspectives of others with autism rather that imposing their own notions onto someone else.  She asserts that she has taken control of her autism, that it does not control her.

Williams, D. (1996). Like colors to the blind. New York: Times Books.

Like Colors To The Blind
is Donna Williams’ third book about her life as a person with autism. When she was diagnosed with autism at the age of 25, she wrote Nobody, Nowhere as an attempt to explore her experiences as a person with autistic symptoms. In her sequel, Somebody, Somewhere , she continued to analyze how role-playing and ritualistic behavior helped her to cope with her environment, and how she was able to begin to replace these mechanisms with genuine interactions. This, her latest work, builds upon the last, addressing relationships and emotions. Williams describes her relationship with Ian, who became her best friend and eventually her husband.

Willmuth, M., & Holcomb, L. (1994). Women with disabilities: Found voices. Binghamton, NY: The Haworth Press, Inc.

Written almost entirely by woman with disabilities, Women with Disabilities: Found Voices is a deeply personal and compelling discourse of the body, violence, sexuality, and disability. The authors offer a multicultural perspective, which speaks frankly about their experiences. They discuss the abuses they have endured and explain how they have struggled with the issue of being a woman with a body that does not conform to the image that society values.

Classics

Disability Studies existed before it had a name. That is, before there was an area of academic inquiry named Disability Studies, theorists, researchers, and writers examined disability as a social, cultural, or political phenomenon, rather than a deficit residing within individuals. In this section, we identify books and articles that helped provide a foundation for what we now refer to as Disability Studies. Of course, each Disability Studies scholar would probably come up with a different list of influential writings. This list merely reflects Steve Taylor’s perspective.

Bogdan, R., & Biklen, D. (1977, March/April). Handicapism. Social Policy, 7(4), 14-19.

In this article, Bogdan and Biklen examined “handicapism” as “a set of assumptions and practices that promote the differential and unequal treatment of people because of apparent or assumed physical, mental, or behavioral differences.” The article was one of the first scholarly writings to make parallels between racism and sexism, on the one hand, and systematic discrimination and prejudice against people with disabilities, on the other. Today, the term “ableism” is commonly used to represent what Bogdan and Biklen called handicapism.

Bogdan, R., & Taylor, S.J.  (1976).  The judged, not the judges: An insider’s view of mental retardation. American Psychologist, 31 (1), 47-52.

Bogdan and Taylor presented a life history, or sociological autobiography constructed through open-ended interviews, of a man labeled mentally retarded (given the pseudonym Ed Murphy). The article presented Ed Murphy’s account of his experiences living in a “state school” for the mentally retarded and his subsequent placement in the community. In a brief introduction and conclusion, Bogdan and Taylor argued that mental retardation was a social construction the existed in the minds of those who label others—the “judges”—and not in the minds of those so labeled—the “judged.”

Dexter, L. A. (1960). On the politics and sociology of stupidity in our society.  Paper presented at the American Association on Mental Deficiency.  Reprinted in Mental Retardation , 1994, 32(2), 152-55, with an introduction by Philip Ferguson.

Dexter critiqued the “common-sense assumptions about mental deficiency” made by professionals. He reinterpreted “mental deficiency” by means of an analogy to a hypothetical society in which people valued grace and style in movement as our society values intelligence. He speculated that in such a society, there would be discrimination against people who were clumsy—the “gawkies”—not because they lacked the skills to participate in and contribute to society, but simply because society would be designed to require grace to perform rudimentary tasks. Through this analogy, Dexter argued that the values and structure of society, rather than the characteristics of individuals, were the reasons for discrimination against and exclusion of people labeled mentally deficient.

Goffman, E.  (1961).  Asylums: Essays on the social situation of mental patients and other inmates.  Garden City: NY: Anchor Books.

Goffman examined the characteristics of mental hospitals, prisons, and other institutions and the devastating effects of institutionalization on a person’s sense of self. One of Goffman’s major contributions was his definition of the concept of total institutions: “A total institution may be defined as a place of residence and work where a large number of like-situated individuals, cut off from the wider society for an appreciable period of time, together lead an enclosed, formally administered round of life.”  Goffman’s definition of total institutions allows us to see similarities between social organizations that ostensibly serve different purposes.

Goffman, E.  (1963).  Stigma: Notes on the management of spoiled identity.  Englewood Cliffs, NJ: Prentice-Hall.

According to Goffman, a stigma is not merely a difference, but a characteristic that deeply discredited a person’s identity and moral character. Goffman argued that disabilities are stigmatizing and dominate a person’s identity in interactions with others.  Although Goffman and others probably over-stated the stigmatization, rejection, and exclusion of people with disabilities and the influence of others’ attitudes on people’s self-concepts, the notion of stigma is useful for understanding how disability is constructed and interpreted in the society at large.

Kesey, K.  (1962). One flew over the cuckoo’s nest. New York: Signet.

Kesey’s powerful and entertaining novel pitted the rebellious inmate Randall P. McMuphy against Big Nurse and the oppressive authority of the mental hospital. His novel can be read both as a vivid description of the depressing and dehumanizing routines and practices at institutions and as a metaphor for the resistance of human beings to conformity and compliance to authority.

Mercer, J. R. (1973). Labeling the mentally retarded: Clinical and social system perspectives on mental retardation.   Berkeley, CA: University of California Press.

“Persons have no names and belong in no class until we put them in one,” wrote Mercer. “Whom we call mentally retarded, and where we draw the line between the mentally retarded and the normal, depend upon our interest and the purpose of our classification.” In this study of people with mental retardation in the community, Mercer distinguished between the clinical perspective that classifies mental retardation as an objective condition and the social system perspective that regards mental retardation as an acquired social status imposed on people by others. Her clinical and social system perspectives parallel the medical (deficit) and social model of disability found in Disability Studies today. Mercer reported that schools, in particular, perpetuate the labeling of people as mentally retarded, especially children from ethnic minorities. The only drawback in her analysis is that she did not challenge the construct of mental retardation itself, only the labeling by schools and other agencies of people who otherwise blended into the community.

Roth, J. A. (1963). Timetables: Structuring the passage of time in hospital treatment and other careers.  Indianapolis, IN: Bobbs-Merrill.

Building on his role as a patient in a tuberculosis hospital, Roth examined how people perceive and subjectively experience time. He showed how people with a chronic illness develop norms and benchmarks to evaluate their progress and treatment and how they may come into conflict with health care professionals in constructing these timetables. He used his examination of people with a chronic illness to explore how people in other situations experience time.

Rothman, D. J. (1971). The discovery of the asylum: Social order and disorder in the new republic.  Boston: Little, Brown.

Rothman traced the development of American asylums for poor people, people with disabilities, criminals, orphans, and others in the Jacksonian era. According to Rothman, the rapid development of asylums reflected an attempt to promote the stability of society and cohesion of the community in a period in which traditional ideas and practices were breaking down. Rothman rejected the notion that asylums represented a step forward in the progress of civilization. As he asked, “Was an organization that would eventually turn into a snake pit a necessary step forward for mankind?”

Scott, R. A. (1969). The making of blind men: A study of adult socialization. New York: Russell Sage Foundation.

Scott argued that the behavior and attitudes characteristic of many people with impaired vision are socially acquired and not inherent in their physical condition. He focused his attention on agencies that serve blind people and looked at the ways in which these agencies socialize people to think and act as “blind.” Scott questioned whether agencies need blind people more than blind people need the agencies designed to serve them.

Szasz, T. S. (1961). The myth of mental illness: Foundations of a theory of personal conduct. New York: Delta and Szasz, T.S. (1970). The manufacture of madness. New York: Delta.

In these two books and a host of other writings, Szasz, a controversial psychiatrist, challenged the validity of the concept of mental illness. Building on history, philosophy, and sociology, Szasz argued that mental illness is a metaphor and does not exist in the same way as physical illnesses. Rather, what is called mental illness reflects non-conformity with societal expectations. Szasz critiqued “Institutional Psychiatry,” which he described as a threat to individual freedom and autonomy.

Other Books, Chapters, and Articles

Due to space limitations and time constraints, this is a listing of the many other books, chapters, and articles concerning Disability Studies. Information on more recent scholarly research and literature on disability are reviewed in periodicals such as Disability Studies Quarterly and the discussion logs of the on-line group, H-Disability .

Adams, R. (2001). Sideshow U.S.A.: Freaks and the American cultural imagination. Chicago: University of Chicago Press.

Albrecht, G. L. (1992). The disability business: Rehabilitation in America [Sage Library of Social Research Vol. 190]. Newbury Park: Sage Publications.

Allen, J. D. (2003). Gay, lesbian, bisexual, and transgender people with developmental disabilities and mental retardation: Stories of the Rainbow Support Group. Binghamton, NY: Harrington Park Press.

Asch, A. (2001). Critical race theory, feminism, and disability: Reflections on social justice and personal identity. Ohio State Law Journal, 62 (1), 391-425.

Attwood, F. (1998). Weird lullaby: Jane Campion’s The Piano . Feminist Review, 58, 85-101.

Barile, M. (2002). Disablement and feminization of poverty. Women in Action, 2, 49-56.

Batson, T., & Bergman, E. (Eds.). (2002). Angels and outcasts: An anthology of Deaf characters in literature (3rd ed.). Washington, DC: Gallaudet University Press.

Bauby, J.  (1998). (J. Leggatt, Trans.) The diving bell and the butterfly: A memoir of life in death. New York: Vintage Books.

Begum, N. (1992).  Disabled women and the feminist agenda.  Feminist Review, 40, 70-84.

Block, P. (2000). Sexuality, fertility, and danger: Twentieth-century images of women with cognitive disabilities. Sexuality and Disability, 18 (4), 239-254.

Branson, J., & Miller, D. (2002). Damned for their difference: The cultural construction of Deaf people as disabled: A sociological history. Washington, DC: Gallaudet University Press.

Breslin, M. L., & Yee, S. (Eds.). (2002). Disability rights law and policy: International and national perspectives. Ardsley, NY: Transnational Publishers.

Brown, S. E. (2000). A celebration of diversity: An annotated bibliography about disability culture. Las Cruces, NM: Institute on Disability Culture.

Brownworth, V. A., & Raffo, S. (Eds.). (1999). Restricted access: Lesbians on disability. Seattle: Seal Press.

Burrell, P.M. (1999).  Feminism and disability. Social Science Journal, 36(1), 189.

Butler, R., & Parr, H. (Eds.) (1999). Mind and body spaces: Geographies of illness, impairment and disability [Critical Geographies]. London and New York: Routledge.

Campbell, F. A. (2000).  Eugenics in disguise? Law, technologies, and negotiating the ‘problem’ of disability. Australian Feminist Law Journal, 14, 55-70.

Carlson, L. (2001). Cognitive ableism and Disability Studies: Feminist reflections on the history of mental retardation. Hypatia, 16 (4), 124-139.

Clayton, B. (1998). Forgotten prophet: The life of Randolph Bourne [Reprint ed.]. Columbia, MO: University of Missouri Press.

Corker, M. (2001). “Disability”—The unwelcome ghost at the banquet and the conspiracy of “normality.” Violence and Abuse Abstracts, 7 (3), 163-252.

Corker, M. (2001). Sensing disability. Hypatia, 16 (4), 34-52.

Corker, M., & French, S. (Eds.). (1999). Disability discourse [Disability, Human Rights, and Society]. Berkshire, United Kingdom: Open University Press.

Cousins, M. (1999). Disabling beauty: Alexa Wright. Portfolio , 30, 10-15, 49, 52-53.

Crow, L. (2000).  Helen Keller: Rethinking the problematic icon. Disability & Society, 15(6), 845-859.

Cushing, P., & Lewis, T. (2002). Negotiating mutuality and agency in care-giving relationships with women with intellectual disabilities. Hypatia, 17(3), 173-193.

Daneli, A., & Woodhams, C. (2000). Researching equality and disability: Taking methodological lessons from feminism?  Management Research News, 23, 50-52.

Devlieger, D., Rusch, F., & Pfeiffer, D. (Eds.). (2003). Rethinking disability: The emergence of new definitions, concepts and communities. Philadelphia: Garant/Coronet Books.

Donaldson, E. J. (2002).  The corpus of the madwoman: Toward a feminist Disability Studies theory of embodiment and mental illness. NWSA Journal, 14(3), 99-119.

Ellis, C. (1995). Final negotiations: A story of love, loss, and chronic illness [Health, Society, and Policy]. Philadelphia: Temple University Press.

Erevelles, N. (2000).  Educating unruly bodies: Critical pedagogy, Disability Studies, and the politics of schooling.  Educational Theory, 50(1), 25-47.

Ferri, B. A., & Gregg, N. (1998). Women with disabilities: Missing voices. Women’s Studies International Forum, 21 (4), 429-439.

Finke, B. (2003). Long time, no see. Urbana and Chicago: University of Illinois Press.

Fleischer, D. Z., & Zames, F. (2001). The disability rights movement: From charity to confrontation. Philadelphia: Temple University Press.

Fox, A. M., & Lipkin, J. (2002). Res(Crip)ting feminist theater through disability theater: Selections from the disAbility project. NWSA Journal, 14(3), 77-98.

Frank, A. W. (1997). The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press.

Frank, G. (2000). Venus on wheels: Two decades of dialogue on disability, biography, and being female in America. Berkeley: University of California press.

Freeberg, E. (2001). The education of Laura Bridgman: First deaf and blind person to learn language. Cambridge, MA and London: Harvard University Press.

Gallagher, H. G. (1996). Black bird fly away: Disabled in an able-bodied world. Clearwater, FL: Vandamere Press.

Gallagher, H. G. (1999). FDR’s splendid deception [FDR Memorial Edition]. Clearwater, FL: Vandamere Press.

Galli, R. (2001). Rescuing Jeffrey. New York: Griffin Trade Paperback.

Gaventa, W. C., & Coulter, D. L. (Eds.). (2001). The theological voice of Wolf Wolfensberger. Binghamton: The Haworth Pastoral Press, Inc.

Gershick, T. J. (2000). Toward a theory of disability and gender. Signs, 25(4).

Ghai, A. (2002). Disabled women: An excluded agenda of Indian feminism. Hypatia, 17(3), 49-66.

Goggin, G., & Newell, C. (2003). Digital disability: The social construction of disability in new media. Lanham, MD: Rowman & Littlefield Publishers, Inc.

Groce, N. (1986, May). “The town fool”: An oral history of a mentally retarded individual in small town society [Wenner-Gren Foundation Working Papers in Anthropology]. New York: Wenner-Gren Foundation.

Guter, B., & Killacky, J. R. (Eds.). (2003). Queer crips: Disabled gay men and their stories. Binghamton, NY: Harrington Park Press.

Hales, G. (Ed.). (1996). Beyond disability: Towards an enabling society. Thousand Oaks, CA: Sage Publications.

Hall, K. Q. (2002).  Feminism, disability, and embodiment. NWSA Journal, 14(3), vii-xiii.

Handler, L. (1998). Twitch and shout: A Touretter’s tale. New York: Plume.

Hans, A., & Patri, A. (Eds.). (2003). Women, disability and identity. Thousand Oaks, CA: Sage Publications.

Herndon, A. (2002). Disparate but disabled: Fat embodiment and Disability Studies. NWSA Journal, 14(3), 120-137.

Herr, S. S., Gostin, L. O., & Koh, H. H. (Eds.). (2003). The human rights of persons with intellectual disabilities: Different but equal. Oxford and New York: Oxford University Press.

Hershey, L. (2003).  Disabled women organize worldwide. Off Our Backs, 33(1&2), 16-18.

Hevey, D. (1992). The creatures that time forgot: Photography and disability imagery. Routledge: London.

Holzer, B., Vreede, A., & Weigt, G. (Eds.). (2001). Disability in different cultures: Reflections on local concepts. Germany: Transcript Verlag.

Houston, R.A. (2002). Madness and gender in the long eighteenth century. Social History, 27(3), 309-326.

Hubert, J. (2001). Madness, disability and social exclusion: The archaeology and anthropology of ‘difference’  [One World Archaeology]. London and New York: Routledge.

Jackson, C. (2000).  Waste and whiteness: Zora Neale Hurson and the politics of eugenics. African American Review, 34 (4), 639-660.

Jenkins, R. (Ed.). (1998). Questions of competence: Culture, classification and intellectual disability. Cambridge, UK: Cambridge University Press.

Johnson, M., & Shaw, B. (Eds.). (2001). To ride the public’s buses: The fight that built a movement. Louisville, KY:  The Advocado Press.

Johnstone, D. (1998). An introduction to Disability Studies. London: David Fulton Publishers.

Jones, C. K. (2002). “Some world’s—wonder in chapel or crypt”: Elizabeth Barrett Browning and disability. Nineteenth Century Studies, 16 , 21-35.

Judge David L. Bazelon Center for Mental Health Law. (2002). Civil rights and human dignity: Three decades of leadership in advocacy for people with mental disabilities. Washington, DC: Author.

Jung, K. E. (2002). Chronic illness and educational equity: The politics of visibility. NWSA Journal, 14(3), 178-200.

Karp, D. A. (1996). Speaking of sadness: Depression, disconnection, and the meanings of illness. Oxford and New York: Oxford University Press.

Kuppers, P. (2003). Disability and contemporary performance: Bodies on edge. London and New York: Routledge.

Kuusisto, S. (1998). Planet of the blind. New York: Random House.

Lacom, C. (2002). Revising the subject: Disability as third dimension in Clear Light of Day and You Have Come Back . NWSA Journal, 14(3), 138-154.

Linneman, R. D. (2001). Idiots: Stories about mindedness and mental retardation [Counterpoints: Studies in the Postmodern Theory of Education Vol. 154]. New York: Peter Lang Publishing.

Luczak, R. (2003). Silence is a four-letter word: On art and deafness. Minneapolis: The Tactile Mind Press.

Mairs, N. (1987). Plaintext. New York: HarperCollins.

Michalko, R. (1998). The two-in-one: Walking with Smokie, walking with blindness [Animals, Culture, and Society]. Philadelphia: Temple University Press.

Mitchell, D. T., & Snyder, S. L. (Eds.). (2001). Narrative prosthesis: Disability and the dependencies of discourse [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press.

Munson, P. (2000). Stricken: Voices from the hidden epidemic of chronic fatigue syndrome. Binghamton, NY: Haworth Press.

Nasdjj. (2003). The boy and the dog are sleeping. New York: Ballantine Books.

Norden, M. F. (1994). The cinema of isolation: A history of physical disability in the movies. New Brunswick, NJ: Rutgers University Press.

O’Brien, M., with Kendall, G. (2003). How I became a human being: A disabled man’s quest for independence [Wisconsin Studies in Autobiography]. Madison: University of Wisconsin Press.

Olkin, R. (2001). What psychotherapists should know about disability. New York: Guilford Press.

Ototake, H. (2000). (G. Harcourt, Trans.). No one’s perfect. Japan: Kodansha International.

Parens, E., & Asch, A. (Eds.). (2000). Prenatal testing and disability rights [Hastings Center Studies in Ethics]. Washington, DC: Georgetown University Press.

Parker, S. (2002). Tumbling after: Pedaling like crazy after life goes downhill. New York: Crown Publishing Group.

Pointon, A., & Davies, C. (Eds.). (1997). Framed: Interrogating disability in the media. London: British Film Institute.

Preston, P. (1998). Mother father deaf: Living between sound and silence. Boston: Harvard University Press.

Rogers, L. J., & Swadener, B. B. (Eds.). (2001). Semiotics & dis/ability: Interrogating categories of difference. Albany: State University of New York Press.

Rose, M. L. (2003). The staff of Oedipus:  Transforming disability in Ancient Greece [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press.

Russell, M., & Malhotra, R. (2002). The political economy of disablement: Advances and contradictions [Online]. Socialist Register 2002: A World of Contradictions. Available: http://www.yorku.ca/socreg/2002.html

Ryan, D. F., & Schuchman, J. S. (Eds.). (2002). Deaf people in Hitler’s Europe. Washington, DC: Gallaudet University Press in association with the United States Holocaust Memorial Museum.

Scheff, T. J. (1999). Being mentally ill: A sociological theory (3rd ed.). Hawthorne, NY: Aldine de Gruyter.

Schein, J. D. (1989). At home among strangers: Exploring the Deaf community in the United States. Washington, DC: Gallaudet University Press.

Seymour, W. (Ed.). (1998). Remaking the body: Rehabilitation and change. London and New York: Routledge.

Silvers, A., Wasserman, D., & Mahowald, M. R. (1998). Disability, difference, discrimination: Perspectives on justice in bioethics and public policy [Point/Counterpoint: Philosophers Debate Contemporary Issues]. Lanham, MD: Rowman & Littlefield Publishing.

Simmons, P. (2003). Learning to fall: The blessings of an imperfect life. New York: Bantam Doubleday Dell.

Skloot, F. (2003). In the shadow of memory [American Lives Series]. Lincoln, NE: University of Nebraska Press.

Smith, B., & Hutchison, B. (Eds.). (2004). Gendering disability. Rutgers, NJ: Rutgers University Press.

Smith, R. C. (1996). A case about Amy [Health, Society, and Policy]. Philadelphia: Temple University Press.

Stroman, D. F. (2003). The disability rights movement: From deinstitutionalization to self-determination. Lanham, MD: University Press of America, Inc.

Thomas, C. (1999). Female forms: Experiencing and understanding disability [Disability, Human Rights, and Society]. Berkshire, United Kingdom: Open University Press.

Thomson, R. G. (1996). Freakery: Cultural spectacles of the extraordinary body. New York: New York University Press.

Thomson, R. G. (1999, Fall). The new Disability Studies: Inclusion or tolerance? ADFL Bulletin, 31(1), 49-53.  Available: http://www.adfl.org/ADFL/bulletin/v31n1/311049.htm

Titchkosky, T. (2003). Disability, self, and society. Toronto: University of Toronto Press.

Tremain, S. (Ed.). (1999). Bodies of knowledge: Critical perspectives on disablement and disabled women.  Toronto: Women’s Press.

Tucker, B. P. (1995). The feel of silence [Health, Society, and Policy]. Philadelphia: Temple University Press.

Van Cleve, J. V., & Crouch, B. A. (1989). A place of their own: Creating the Deaf community in America. Washington, DC: Gallaudet University Press.

Wade, C. M. (Ed.). (1993). Range of motion: Disability poetry, prose, art. Albany, CA: KIDS Project/Squeaky Wheels Press.

Webb, R. C. (1994). Journey into personhood [Singular Lives: The Iowa Series in North American Autobiography]. Iowa City: University of Iowa Press.

Weimer, J. (1994). Back talk: Teaching lost selves to speak. Chicago: University of Chicago Press

Wilson, J. C., & Lewiecki-Wilson, C. (2001). Embodied rhetorics: Disability in language and culture. Carbondale, IL: Southern Illinois University Press.

Zola, I. K. (2003). Missing pieces: A chronicle of living with a disability. Philadelphia: Temple University Press.

FILMS AND DOCUMENTARIES

Annotations

This section offers just a few, but some of the best films and documentaries which are related to the field of Disability Studies. We have selected several that are staples of the field and several others that reflect a variety of perspectives within Disability Studies. In addition to the documentaries, we have included several independent and foreign films that reflect Disability Studies and do not perpetuate the ableism and stigmatization of disability found in many Hollywood films. For a larger list of films, including major motion pictures, you can visit Films Involving Disabilities. Their web site is: http://www.caravan.demon.co.uk/


Abandoned to their Fate
(1997). Drawing from scholarly records, institutional archives, original photography, and popular media, Philip M. Ferguson traces the historical origins of the prejudice and segregation endured by people with disabilities. This 30-minute film begins in the Middle Ages and ends with today’s move towards independent living and school and community inclusion. Organized in outline format with various types of media demonstrating ideas, this film is excellent for professional development, teacher training, and community awareness. For more information: http://www.pdassoc.com/attf.html

Breathing Lessons (1996). The award-winning documentary, Breathing Lessons, addresses what life as a person with a disability is like from the perspective of Mark O’Brien. O’Brien, who is a poet and journalist, is paralyzed and uses an iron lung. Through his poetry and his insightful commentary, he reflects on such issues as the meaning of life, death, sex, relationships, creativity, and religion. For more information: http://www.pacificnews.org/marko/breathing-lessons.html

Brother’s Keeper (1992). The lives of the Ward brothers, farmers in a rural community in upstate New York, are disrupted when the oldest brother, Bill, dies and his brother, Delbert, is accused of his murder. Brother’s Keeper focuses on the outpouring of support Delbert received from the community. To the townspeople, the Ward boys, as they were affectionately called–Bill, Delbert, Lyman, and Roscoe–were quiet men who lived in a run-down shack and farmed the land on which they grew up. The film chronicles the events surrounding Bill’s death and Delbert’s trial, including the townspeople’s efforts to raise funds for Delbert’s defense, their support of his innocence, and their refusal to see the Ward brothers through the lens of mental retardation. For more information: http://www.sid-ss.net/slcnys/thewards.htm

Burton Blatt: Revisiting the Vision (1995). Through a series of clips from various conferences and talks, viewers are able to revisit the original and inspirational words of the late Burton Blatt. Blatt discusses institutional life, reactions to his and Fred Kaplan’s Christmas in Purgatory , the questionable notion of improving institutional life, and inclusive education. Blatt knew then what we struggle with today. He is remembered for stressing and achieving goals tied to values. His optimism, humor, and passion are central to this collection. This video is included in the media package, Revisiting the Vision: Selected Works of Burton Blatt, which also includes a CD-ROM containing historic photographs from Christmas in Purgatory and The Family Album . For more information: http://thechp.syr.edu/HumanPolicyPress/


The Color of Paradise
(1999). This Iranian film focuses on the relationships between an 8-year-old boy who is blind and his unaccepting father and caring grandmother. The boy returns home from his separate school for summer recess and viewers witness a very different boy, happy and alive, than the “bad lot” his father feels he’s been dealt. Through their interactions, the film covers family issues, notions of a “healthy” child, and views of disability. Visually stunning and emotionally challenging, this is a beautiful film on several levels. For more information: http://www.sonypictures.com/classics/colorofparadise/

The Community Imperative (2002). In 1979, the Center on Human Policy, under the leadership of Burton Blatt, issued The Community Imperative , a declaration supporting the right of all people with disabilities to community living to counter opposition to deinstitutionalization and community inclusion by well-organized groups. Today, years later, inclusion remains controversial in some states and localities. At the same time, many people with disabilities are not receiving the supports they need to live successfully in the community. This video, provided in both VHS and DVD formats, is a documentary of a conference held in Oakland, California in 2002 to revisit the values underlying The Community Imperative . It features segments of presentations by and interviews with several California and national leaders. It also includes clips of historical leaders Burton Blatt, Gunnar Dybwad, and Ed Roberts. Narrated by Martin Sheen, the video recounts the history of community living and describes the challenges to achieving inclusion today. For more information: http://thechp.syr.edu/HumanPolicyPress/

Credo for Support (1996). This powerful 5-minute video set to music (Ennio Morricone, The Mission soundtrack) offers a series of suggestions for people who care about and support someone with a disability. It prompts viewers to question the common perceptions of disability, professionalism, and support. Designed for use in presentations, in service, staff training, and orientation programs, this video can be a provocative catalyst for a dialogue on these issues. For more information: http://www.normemma.com/credwait.htm

Dance Me to My Song (1998). This Australian film and Cannes selection was written by and stars Heather Rose, a woman with cerebral palsy who uses a computer to communicate. The film features Rose’s exceptional acting and a powerful exploration of sexuality, friendship, and daily support issues. This is a strong film that deals with life issues and comes highly recommended. Disability is not demonized, defined as tragedy or deficiency, focused on as something to overcome, used to teach a lesson, or any of the other common misrepresentations in film. It is an important part, but clearly not the only part, of Rose’s character as she lives her life. For more information: http://www.vertigoproductions.com.au/dance.html

Disability Identity and Culture (no date). This bold and controversial selection in the Tools for Change series includes the experimental documentary Disability Culture Rap. Featuring Cheryl Marie Wade, this documentary takes a fresh look at what it means to be disabled in America.  Through hundreds of images and a high-energy delivery, this is disability in our own words: who we say we are. Not the usual anthropological study of disabled people as specimens, we uncover the issues that set our souls on fire: freedom of choice, disability pride, independent living, the power of language and images, sexuality, community, and the right to live with dignity. For more information: http://www.selfadvocacy.org/Module%20Five.htm

Educating Peter (1992). This Academy Award winning documentary highlights one third grade classroom’s year long efforts at inclusive education. It is a rare snapshot of classroom life, this one from Blacksburg, Virginia. While the title infers a focus on Peter, a student with Down syndrome, the film’s success is in its depiction of all that goes in to this school’s daily efforts at teaching all students. It will invariably raise many issues in the discussion of inclusive vs. “special” education and will be a good tool for future teachers to observe and critique.

Graduating Peter (2003). This follow-up documentary to Educating Peter picks up with Peter in middle school and highlights his journey through his final year of high school. Peter finds himself in several different places than his classmates as he ages through the school system and receives a certificate of attendance upon graduation. This film will again raise many issues around inclusive education by showcasing one school’s interpretation of least restrictive environment. Key to this interpretation are definitions of disability and assumptions about potential that are central to Disability Studies. For more information:
http://www.hbo.com/docs/programs/graduating_peter/

The Eighth Day (1996). This Belgian film (French with English subtitles) is about the relationship forged between two men as they try to find happiness and love in their lives. In addition to many other qualities, one of the men has Down syndrome. Both lead actors shared the 1996 Best Actor prize at Cannes. Though the movie falls into several traps of representing disability, it is noteworthy that Pascal Duquenne has Down syndrome considering that many actors with disabilities are still denied roles and many able-bodied actors continue to present their interpretations of characters with disabilities.
For more information: http://us.imdb.com/Details?0116581

The Execution of Wanda Jean (2003). This documentary about the execution of an African-American lesbian who killed her lover explores the humanity of both the death penalty and the label of mental retardation. The claim by Wanda Jean’s lawyers that she is mentally retarded and therefore unfit to be executed raises all aspects of this ongoing discussion. This personal look at Death Row, the power of labels, and the finality of the death penalty is unforgettable. For more information: http://www.hbo.com/docs/programs/wanda/

Extreme Court Blues (2001). Framed in the context of the Alabama v. Garrett Supreme Court decision, this video chronicles the backlash to this decision at the University of Illinois Chicago—the formation of the National Disabled Students Union (NDSU). The video is organized speeches given by rally and NDSU organizers; the speakers consistently make comparisons between disability issues and civil rights (comparing the reaction to the Garrett decision with the SNVCC and the Deaf President Now movement).  Speakers also address issues such as tokenism, the history of institutionalization, eugenics, and sterilization, federal intervention in states’ rights (e.g., comparison between the Garrett decision and the Pierce veto of a federal land grant for Dix’s establishment of an asylum), the Independent Living movement, Not Dead Yet, and access to the general public education curriculum for students with disabilities.

Freaks (1932). Tod Browning’s classic horror film about actual circus performers who exact revenge on a mendacious trapeze artist was shelved for years due to the controversy it created. Viewers were shocked that Browning’s actors actually had disabilities and refused to be subjected to such “grotesque figures.” The film deals well with notions of ableism, beauty, and relationships. This genre film forces viewers to confront issues of normality and humanity central to Disability Studies.  For more information: http://freaks.cinephiles.net/

Going to School-Ir a la Escuela (2001). Going To School-Ir a la Escuela tells a memorable story about inclusion, special education, and empowering children with disabilities and their parents. The film shares the daily experiences of students with disabilities who attend middle and elementary schools in Los Angeles, revealing the determination of parents to see that their children receive a quality education. The issues of respect, civil rights, and education for all children are universal and poignantly conveyed. “Highly recommended” for both undergraduate and graduate level studies and for K-12 students, parents and educators. Commissioned by the Class Member Review Committee of the Chanda Smith Consent Decree. For more information: http://richardcohenfilms.com/GoingtoSchool.htm

Hurry Tomorrow (1975). Hurry Tomorrow is a powerful statement about the violation of human rights of people being treated involuntarily in a state psychiatric hospital in California in 1974. The film provides a visual record of the daily lives of patients being tied down with cuffs and straps, forcibly medicated with powerful tranquilizers, reducing them to helpless zombie like states. This cinema verité classic illustrates how individuals struggle to maintain their dignity in a dehumanized environment. The film withstood an effort to have it banned in California and instead served to help organize ex-patient groups around the country, and to initiate an investigation into patient deaths in state hospitals. For more information: http://richardcohenfilms.com/hurry_tomorrow.html

In the Land of the Deaf (1993). This French film is a documentary about Deaf culture. It touches on many aspects and issues of Deaf culture in a way that other films have not. From an instructor in sign language to a voice teacher pushing her students to speak, from a family’s love to a woman’s wrongful institutionalization, and much more, this film covers much of the spectrum in a straightforward manner. For more information: http://www.alliancefrancaise.com.hk/events/fcp25/24.html

Johnny Got His Gun (1971). This film based on the 1939 novel by Dalton Trumbo, written and directed by Trumbo, explores the consequences of war through the experiences of a man rendered blind, deaf, and immobile by bombing. While the hospital staff view him as helpless and worthless, he begins to piece his story together and viewers hearing his thoughts recognize the horrific dangers of assuming anyone is incompetent or without value. For more information: http://www.eufs.org.uk//films/johnny_got_his_gun.html

King Gimp (2000). This Academy Award winning documentary featuring Dan Keplinger, an artist with cerebral palsy, is a must-see. It spans the thirteen years from his experiences in a separate “special” elementary school to his college life and the development of his artistic skills and goals. Dan’s sense of humor and determination emerge as themes, as well as his struggles with inaccessibility and the tendency (during college) to be a friend but not a boyfriend. The film deals well with the problems of assuming deficiency based on body type and physical appearance. For more information: http://www.kinggimp.com/flash.html

Liebe Perla (1999). This powerful documentary highlights the friendship of two women while revisiting the Nazi’s treatment of people with disabilities. The women, a young disability advocate researching the treatment of little people during the Holocaust and an 80-year-old concentration camp survivor, are similar only in that they are both called short-statured. The film is in German and Hebrew with English subtitles. It is a provocative film that is best viewed with time for discussion afterwards. For more information: http://www.disabilityworld.org/07-08_01/arts/perla.shtml

My Flesh and Blood (2003). This 2003 Sundance Documentary Feature Audience Award winner follows a year in the life of a family of thirteen children with various disabilities headed by a single parent. Honest and touching, the film explores the definition of family while shattering many commonly held assumptions of disability as tragedy and deficiency. What is a “traditional” family? Who is family? Central to this film is the idea that all of these kids are kids first. For more information: http://chaikenfilms.com/Frameset(films).html

No Apologies (1994). This 28-minute video is by Wry Crips Disabled Women’s Theatre, which is a comedy troupe of women who are at the forefront of the disability culture movement in the San Francisco Bay area.  It is comprised of disabled and able-bodied women of diverse racial, social, and class background. Wry Crips uses humor as a form of resistance. Their performances, comprised of poetry, readings, signing, performing skits, and reading narratives, all resist medical paradigms, social stereotypes, economic oppression, or individualist assumptions regarding disability issues. The women of Wry Crips embrace disability, seeing beauty and acceptance where able-bodied people only see difference and abnormality.  For more information: http://www.lustydevil.com/fatgirl/wrycrips.html

Regular Lives (1988). Regular Lives was produced in 1988 for PBS by the Academy Award winning directors Gerardine Wurzburg and Tom Goodwin; Syracuse University professor Douglas Biklen was its Executive Producer. The documentary explores inclusion of students with disabilities in elementary and secondary classes and includes interviews with teachers, a school principal, and parents. A concluding segment shows young adults with disabilities living on their own in their communities. Themes include the least dangerous assumption, school and community citizenship, and the value of diversity. For more information: http://teacher.shop.pbs.org/product/index.jsp?productId=1407524


Self-Advocacy: Freedom, Equality, and Justice for All
(no date). This award-winning video is part of the ACT series, Tools for Change . Narrated by writer, performer, and activist Cheryl Marie Wade, this program combines interviews, archival footage, and photographs to describe dominant historical models of disability and the roles self-advocates can and are now playing in determining their own lives. From the moral and medical models to the minority group model to the independent living and disability rights movements, Wade charts the course that has led to the present and offers the framework for self-advocates to continue to develop their voice and maintain the efforts towards inclusive societies. For more information: http://www.selfadvocacy.com/Module%20One.htm


Self Advocates Becoming Empowered
(1997). Self Advocates Becoming Empowered is about people with cognitive disabilities forming a national organization to work on issues they deem important, such as closing institutions, exercising their rights as citizens, supporting people to live in communities, and opposing injustice in the criminal justice system. Likening their movement to the civil rights movement of the 60s, many of the advocates speak out about the importance of their mission to people with disabilities. For more information: http://thechp.syr.edu/HumanPolicyPress/SABE_video.html

Selling Murder: The Killing Films of The Third Reich (1991). This is a chilling Nazi propaganda film about the genocide of people with disabilities during the Second World War. Under what the Third Reich termed the “hereditary health law,” they convinced doctors that killing people with mental or physical disabilities was for their own good, and the good of the Aryan nation at large. The original film makers used shadows and poor lighting to make people seem grotesque, and played on the medical model of disability in terms of what is “abnormal” and “normal,” and even “human” and “not human.” This is a powerful film that should generate interesting discussions if used in a Disability Studies class.  Please note: This film was aired on the Discovery Channel a few years ago, and we are not sure of its availability, but it is definitely worth a good search. For more information on people with disabilities during the Holocaust: http://www.ushmm.org/research/library/bibliography/handicapped/right.htm#film

Sound and Fury (2001). This Academy Award nominee for Best Documentary follows one extended family on their journey as two sets of parents deal with the question of getting cochlear implants for their deaf children. This is an intense film that is sure to inspire excellent discussion about the nature of cures in general, but specifically around the value of the implants. The film educates viewers about Deaf culture and raises problematic societal issues around diversity, humanity, and membership that continue today. It is challenging, effective, and entertaining. For more information: http://www.pbs.org/wnet/soundandfury/

Taylor’s Campaign (1998).  Taylor’s Campaign is a humorous and insightful look at hardworking people living in cardboard lean-tos and dumpster diving for survival in Santa Monica, California. When local lawmakers threaten to suspend their civil rights in a drive to sweep the streets of “the homeless,” a destitute ex-truck driver who became disabled in an auto accident decides to run for city council on a platform of tolerance. This video has been described as “the best film on homelessness in this era…an invaluable resource for teaching about poverty.”  Recommended for all age levels. For more information: http://richardcohenfilms.com/taylor’s.html

Titicut Follies (1967). Although more than 30 years old, Titicut Follies remains a classic, depicting institutional life in a mental health facility. The 1967 Wiseman film is named for and centers around a talent show, the Titticut Follies, held for the inmates of the Bridgewater State Mental Hospital, in Massachusetts. While scenes from the talent show are disbursed throughout the film, the stark reality of daily life in the institution is revealed. There is little regard for the inmates’ human dignity; not only is what they have to say dismissed, but they are subjected to strip searches, lack of privacy, ridicule, and isolation. Titticut Follies is a grim film that reflects the barren existence of life in a mental hospital. For more information: http://www.zipporah.com/index.html and http://www.subcin.com/titicut.html

Tools for Building a Self-Advocacy Group (2000). This instructional video presents specific steps and tools for building a self-advocacy group. Part of the Self-Advocacy Start-Up Toolkit developed by Self Advocates Becoming Empowered (SABE), it includes the philosophy of self-advocacy and challenges viewers to work to make it happen in their lives. The start-up process is broken into five sections: Starting Groups, Working on Issues, Self-Advocates and Self-Determination, Advisor Issues, and Materials on The Self-Advocacy Movement. For more information on the Toolkit : http://thechp.syr.edu/HumanPolicyPress/toolkit.html


Twitch and Shout
(1995). This is a must-see documentary about living with Tourette Syndrome (TS) made by photojournalist Lowell Handler who has TS himself. The film explores what TS is, what it means to live with it, and people’s reactions to the tics that are its physical manifestation. TS is reclaimed and reframed in terms of life energy. Handler calls out notions of normality as he weaves together the immediately appealing stories of four successful adults. The film should challenge viewers to rethink notions of human value and individual differences. For more information:   http://www.blinddogfilms.com/twitchandshout/


Vital Signs: Crip Culture Talks Back
(1997). In the documentary Vital Signs: Crip Culture Talks Back, participants in a national Disability and the Arts conference explore the politics of disability through their performances, which include such texts as art, fiction, poetry, stand-up comedy, drama, and personal stories. It features such disability rights activists as Cheryl Marie Wade, Mary Duffy, and Harlan Hahn, and also includes group debates and behind-the-scenes conversations. The film also addresses the culture of disability and the shared struggle people with disability have in gaining access to influential cultural institutions. For more information: http://www.fanlight.com/catalog/films/230_vs.shtml

When Billy Broke his Head… And Other Tales of Wonder (1995). First premiering on PBS in 1995, this film by Billy Golfus explores the concept of disability rights and takes a close look at the disability rights movement and those involved. Golfus, who has a traumatic brain injury, intertwines his story with the experiences of others who are struggling for their rights.  This is a must see. For more information: http://www.fanlight.com/catalog/films/136_wbbhh.shtml

Additional Titles

Due to space limitations and time constraints, we are including a listing of some of the many other emerging films and documentaries that are now available concerning Disability Studies:

A Little History Worth Knowing
Bong and Donnell
The Collector of Bedford Street
Elling
How’s Your News?
If I Can’t Do It
Lifestyles of the Poor and Unknown
Living with Grace
Losing It
My Country
Off Track
On the Road with Temple
Out of Sight
Patterns
People in Motion: Changing Ideas about People with Disabilities
Positive Images
Profoundly Normal
Rachael in Middle School
Rachael, Being Five
Refrigerator Moms
Stairway to Heaven
Tru Confessions
Us and Them
Waiting for Ronald
Willowbrook: The Last Great Disgrace

ACADEMIC PROGRAMS IN DISABILITY STUDIES

Updated 8/2006

The following section contains a listing of Disability Studies programs in North American Academic Institutions 1 . The title “Disability Studies” has become popular and is sometimes used to refer to programs in clinical or instructional fields. The programs in this listing meet the following criteria: (1) the sponsoring university offers a four-year undergraduate degree or Master’s or doctoral degrees: (2) the programs offer a formal academic program, including a degree, concentration, specialization, minor, major, or certificate in Disability Studies; (3) the programs include disability course work in non-clinical and non-instructional fields (e.g., the Humanities, Social Sciences, Literature, Law, Policy Studies, or the Visual or Performing Arts); and (4) information describing the programs can be found in written form or on a university web site. This listing does not include research or training centers that do not offer formal academic programs.

Academic Institution: College of Staten Island, The City University of New York
Program: Minor in Disability Studies, Interdisciplinary Program
Academic Unit: Department of Sociology, Anthropology, and Social Work
Address: Psychology/Sociology, Anthropology, and Social Work Building (4S), Room 436
2800 Victory Boulevard
Staten Island, NY  10314
Contact: David Goode, Ph.D.
Phone/TTY: (718) 982-3757
E-mail:
GOODE@postbox.csi.cuny.edu
WWW: http://www.csi.cuny.edu/catalog/undergraduate/programs/disabilitystudies.html
Comment: This minor may be taken in combination with any baccalaureate degree.
Academic Institution: The City University of New York
Program: Multidisciplinary Graduate Certificate in Disability Studies
Academic Unit: CUNY School of Professional Studies/John F. Kennedy, Jr. Institute for Worker Education
Address: John F. Kennedy, Jr. Institute for Worker Education
101 West 31st Street, 14th Floor
New York, NY 10001
Contact: William Ebenstein, Ph.D.
Phone/TTY: (646) 344-7315
E-mail:
William.Ebenstein@mail.cuny.edu
WWW: http://sps.gc.cuny.edu/programs/certificate.html#multidisciplinary
Academic Institution: Gallaudet University
Program:  Master’s of Arts in Deaf Studies
Cultural Studies Concentration
Deaf History Concentration
Academic Unit: Department of ASL and Deaf Studies
Address: Hall Memorial Building, Room E-111
800 Florida Avenue, NE
Washington, DC 20002-3695
Contact: M.J. Bienvenu, Department Chair
Phone/TTY: (202) 651-5814 – v/tty
E-mail: mailto:Martina.Bienvenu@gallaudet.edu
WWW: 
http://depts.gallaudet.edu/Deaf.Studies/
Comment: Disability Studies is incorporated into History and other courses
Academic Institution: Hofstra University
Program: Disability Studies Program (Undergraduate Minor)
Academic Unit: College of Liberal Arts and Sciences
Address: Hempstead Turnpike
Hempstead, NY 11549
Contact: G.T. Couser, Director of Disability Studies Program and Professor of English
Phone/TTY: 516-463-6743
Email: G.T.Couser@hofstra.edu
WWW: http://www.hofstra.edu/academics/academics_2004_bulletin.cfm
Comment: Information on this Minor is listed on pp. 166-167 of the Academic Bulletin (see link above)
Academic Institution: Pacific University
Program: Disability Studies in the Humanities and Social Sciences (Minor)
Academic Unit: College of Arts & Sciences
Address: Disability Studies/Humanities
2043 College Way
Forest Grove, OR  96116
Contact: Dr. Tim Thompson
Phone/TTY: (503) 352-2868
E-mail: thompsot@pacificu.edu
WWW: http://www.pacificu.edu/admissions/undergrad/academic/factsheets.cfm
(select “Disability Studies” from list of majors)
Academic Institution: Ryerson University
Program: Bachelor’s of Arts in Disability Studies
Academic Unit: School of Disability Studies
Address: Ryerson University
350 Victoria Street
Toronto, ON M5B 2K3
CANADA
Contact: Melanie Panitch, Director
Phone/TTY: (416) 979-5000 (ext. 6128)
E-mail: mpanitch@ryerson.ca
WWW: http://www.ryerson.ca/ds/
Comment: Course-work can be taken via two-week on-site courses and distance education.
Academic Institution: State University of New York (SUNY) Stony Brook
Program: Disabilities Studies Concentration, Bachelor of Science in Health Science
Academic Unit: School of Health Technology & Management
Address: HSC – SHTM, L2-439
Stony Brook, NY 11794-8201
Contact: Pamela Block, Ph.D., Clinical Associate Professor
Phone/TTY: (631) 444-3197
E-mail:
pblock@notes.cc.sunysb.edu
WWW: 
http://www.hsc.stonybrook.edu/sohtm/sohtm_bshs_index.cfm
Comment: Currently information on the Disability Studies Concentration has not been posted on the web; however, information sheets about the Concentration can be obtained at the address above.
Academic Institution: Syracuse University
Program: Graduate (Master’s and Ph.D.) Concentration in Disability Studies
Graduate Certificate of Advanced Study (CAS) Program in Disability Studies
Joint Degree Program in Law (J.D.) and Education (Master’s and CAS in Disability Studies)
Academic Unit: Cultural Foundations of Education, School of Education
Address: Center on Human Policy
Syracuse University
805 South Crouse Avenue
Syracuse NY 13244-2280
Contact: Steven J. Taylor, Ph.D., Professor and Coordinator of Disability Studies
Phone/TTY: (315) 443-3851; TTY (315) 443-4355
E-mail:
staylo01@syr.edu
WWW: 
http://disabilitystudies.syr.edu/what/disabilitystudiesatSU.aspx
Comment: The CAS in Disability Studies in available to students matriculated in any graduate program at Syracuse University as well as persons who are not otherwise enrolled in a university program. For information on the Joint Degree Program and Law and Education, contact Professor Arlene Kanter, College of Law, Suite 306, Syracuse University 13244 (kantera@syr.edu or 315-443-4582).
Academic Institution: Teachers College, Columbia University
Program: Master of Arts in dis/Ability Studies in Education (DSE)
Academic Unit: Department of Curriculum and Teaching
Address: Box 31
525 West 120th Street
New York, NY 10027
Contact: D. Kim Reid, Ph.D., Program Coordinator
Phone/TTY: (212) 678-3038 (v) (212) 678-3853 (TTY)
E-mail: dkr10@columbia.edu
WWW: http://www.tc.edu/C&T/Disability-Studies/detail.asp?id=Program%2BDescription
Academic Institution: Temple University
Program: Graduate Certificate in Disability Studies
Academic Unit: College of Education
Address: Institute on Disabilities
Room 423 Ritter Annex
1301 Cecil B. Moore Avenue
Philadelphia, PA 19122
Contact: Mike Dorn, Ph.D., Coordinator of Disability Studies
Phone/TTY: (215) 204-3373; TTY (215) 204-1356
E-mail:
mdorn@temple.edu
WWW: http://disabilities.temple.edu/programs/ds
Academic Institution: Washington State University
Program: Undergraduate Minor in Disability Studies
Academic Unit: Department of Speech and Hearing Sciences
Address: P.O. Box 642420
Pullman, WA 99164-1035
Contact: Dr. Gail D. Chermak, Professor and Chair
Phone/TTY: (509) 335-4526
E-mail:
chermak@wsu.edu
WWW: 
http://www.libarts.wsu.edu/speechhearing/academics/minor.html
Academic Institution: University of California at Berkeley
Program: Concentration in Disability Studies in Undergraduate Major in American Studies
Academic Unit: American Studies
Address: Office of Undergraduate and Interdisciplinary Studies
301 Campbell Hall
Berkeley, CA 94720-2922
Contact: Marcia Condon, Student Affairs Officer
Phone/TTY: (510) 642-9320 or (510) 642-0108
For TTY/TDD access, call (510) 642-9900
E-mail:
mailto:mcallum@socrates.berkeley.edu
WWW: 
http://ls.berkeley.edu/dept/as/forms/AS_HANDBOOK_12-2002.pdf
(see page 16 of this handbook for information on the concentration on Disability Studies)
Academic Institution: University of Delaware
Program: Undergraduate Interdisciplinary Minor in Disabilities Studies
Academic Unit: The College of Human Services, Education and Public Policy
Address: The Center for Disabilities Studies
166 Graham Hall
Academy Street
Newark, DE 19716-7355
Contact: Dr. Laura Eisenman, Associate Professor
Phone/TTY: (302) 831-6974; TTY (302) 831-4689
E-mail:
eisenman@udel.edu
WWW: http://www.udel.edu/cds/disabilities_minor.html
Academic Institution: University of Hawaii at Manoa
Program: Interdisciplinary Disability and Diversity Studies Certificate
Disability Studies Minor within Liberal Studies Bachelors Degree Program
Academic Unit: Center on Disability Studies
Address: 1776 University Ave., UA 4-6
Honolulu, HI 96822
Contact: Norma Jean Stodden
Phone/TTY: (808) 956-4454
E-mail:
NJ.Stodden@cds.hawaii.edu
WWW: http://www.cds.hawaii.edu/cds_core_programs/index.html
Academic Institution: University of Illinois at Chicago
Program: Departments of Disability and Human Development, Occupational Therapy, and Physical Therapy
College of Applied Health Sciences
Address: 1640 West Roosevelt Road, Room 215 (M/C 626)
Chicago IL 60608-6904
Contact: Carol J. Gill, Ph.D., Director of Graduate Studies
Sarah Rothenberger, Program Coordinator, Ph.D. in Disability Studies Program
Phone/TTY: (312) 996-1508; TTY (312) 996-1233
E-mail: cg16@uic.edu ; sr22@uic.edu
WWW: http://www.ahs.uic.edu/ahs/php/index.php?sitename=ahs
Academic Institution: University of Illinois at Chicago
Program: Master of Science in Disability and Human Development
Academic Unit: Department of Disability and Human Development, College of Applied Health Sciences
Address: Suite 436 IIDD
1640 W. Roosevelt Road
Chicago, IL 60608
Contact: Tamar Heller, Ph.D., Head
Glenn Fujiura, Ph.D., Director of Graduate Studies
Phone/TTY: (312) 413-1647; TTY (312) 413-0453
E-mail: DHD@uic.edu
WWW: http://www.uic.edu/depts/idhd/msindhd.htm
Academic Institution: University of Maine
Programs: Undergraduate Disability Studies Core Curriculum
Graduate Interdisciplinary Concentration in Disability Studies
Academic Unit: Center for Community Inclusion
Address: 5717 Corbett Hall, Room 114
Orono, ME 04469-5717
Contact: Elizabeth DePoy
Phone/TTY: (207) 581-1084 or (800) 203-6957
E-Mail: ccimail@umit.maine.edu
WWW: http://www.ume.maine.edu/cci/learning/ids.htm
Academic Institution: University of Manitoba
Program: Interdisciplinary Master’s in Disability Studies
Academic Unit: Education
Address: Room 128 Education Building
Winnipeg, MB R3T 2N2
CANADA
Contact: Tanis Woodland
Phone/TTY: (204) 474-7017
E-Mail: disability_studies@umanitoba.ca
WWW: http://www.umanitoba.ca/disability_studies
Academic Institution: University of Pittsburgh
Program: Graduate Disability Studies Certificate Program
Academic Unit: School of Health and Rehabilitation Sciences, Department of Health Information Management
Address: 6051 Forbes Tower
Pittsburgh, PA 15260
Contact: Dr. Miriam Hertz
Phone/TTY: (412) 383-6653
E-Mail: mhertz@pitt.edu
WWW: http://www.shrs.pitt.edu/SHRSnews/headlines/disability_studies.htm
Academic Institution: University of Toledo
Programs: Undergraduate Interdisciplinary Minor in Disability Studies
Master of Liberal Studies Program (MLS), Concentration in Disability Studies (DST)
Academic Unit: College of Arts & Sciences
Address: Disability Studies Program
University Hall 2100, Mail Stop 920
2801 W. Bancroft
Toledo, OH 43606-3390
Contact: Dr. Mark Sherry, Endowed Chair in Disability Studies
Phone/TTY: (419) 530-724
E-Mail:
mailto:mailto:pmurphy@utnet.utoledo.edu
WWW: http://www.dstprg.utoledo.edu/
Comment: An interdisciplinary major in Disability Studies has been proposed.
Academic Institution: University of Washington
Program: Disability Studies Minor
Academic Unit: Law, Societies, and Justice Program (LSJ)
Department of Political Science, College of Arts and Sciences
Address: Box 353530
Seattle, WA 98195-3530
Contact: Mark Weitzenkamp and Dennis Lang
Phone/TTY: (206) 543-2396
E-Mail: lsjadv@u.washington.edu & dlang@u.washington.edu
WWW: http://depts.washington.edu/disstud/index.html
Academic Institution: University of Wisconsin-Madison
Program: Interdisciplinary Cluster
Academic Unit: College of Letters And Science
Address: South Hall
1055 Bascom Mall
Madison, WI 53706
Contact: Marsha Mailick Seltzer, Ph.D.
Phone/TTY: (608) 263-5940
E-Mail: mseltzer@waisman.wisc.edu
WWW: http://wiscinfo.doit.wisc.edu/cluster/view_proposal_single.asp?id=50
Comment: The University of Wisconsin-Madison does not yet have a formal academic program in Disability Studies. However, the university has made a commitment to the development of a program through a Cluster Hiring Initiative to fill multiple tenure track positions in Disability Studies.
Academic Institution: York University
Program: Master of Arts in Critical Disability Studies
Academic Unit: Faculty of Graduate Studies
Address: Room 438, HNES Building
4700 Keele Street
Toronto, ON M3J 1P3
Canada
Contact: Domenica Lam, Graduate Programme Assistant
Phone/TTY: (416) 736-2100 ext. 44494
WWW: http://www.atkinson.yorku.ca/cdis/
http://www.yorku.ca/web/futurestudents/graduate/pdf/brochure/critical_disability_studies.pdf (PDF copy of the Critical Disability Studies brochure)

PERIODICALS


Disability & Society
http://www.tandf.co.uk/journals/carfax/09687599.html

Disability & Society
is an international journal providing a focus for debate about such issues as human rights, discrimination, definitions, policy and practices. It appears against a background of change in the ways in which disability is viewed and managed.

Definitions of disability are more readily acknowledged to be relative; custodial approaches are seen as inadequate and unacceptable–placing greater emphasis on community care and integration. However, policy intentions may not have the desired effects on the realities of everyday practice and policy changes themselves may be merely cosmetic, or appropriate but unfunded.

While publishing articles that represent all the professional perspectives, the journal also provides an opportunity for the consumers of the services to speak for themselves.

Disability & Society recently made its entire Table of Contents, beginning with Volume One, available on-line.

Disability Studies Online Magazine
http://www.disabilitystudies.com/

This is an online magazine focusing on the academic field of Disability Studies and interdisciplinary discussions of disability. The focus is to consider disability within the framework of society, rather than as individual pathology. Viewing disability in this context one can see the connections and relevance of disability to a wide variety of disciplines, including: geography, sociology, medicine, social work, social policy, architecture, art history, anthropology, comparative religions, philosophy, law, popular culture, media and film, literature, history, women studies, and education to name a few.

Disability Studies Quarterly
http://www.dsq-sds.org

The Disability Studies Quarterly (DSQ ) is published for the Society for Disability Studies. It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities, disability rights advocates, and others concerned with the problems of people with disabilities. The purpose of the Quarterly is to provide a place where people from diverse backgrounds can share ideas and to engage in dialogues that cut across disciplinary backgrounds and substantive concerns. The Quarterly is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society.

Journal of Disability Policy Studies
http://www.proedinc.com/jdps.html

The only journal devoted exclusively to disability policy topics and issues. For more than a decade, the Journal of Disability Policy Studies (JPDS) has addressed compelling, variable issues in ethics, policy, and law related to individuals with disabilities. JPDS addresses a broad range of topics on disability policy from the perspectives of a variety of academic disciplines and publishes articles pertaining to both macro-policy issues (such as the social constructions which direct and constrain policymakers) and micro-policy issues (such as legislative remedies and regulatory matters).

Kaleidoscope
http://www.udsakron.org/kaleidoscope.htm

Kaleidoscope Magazine examines the experiences of disability through literature and the fine arts. Unique to the field of Disability Studies, this award-winning publication expresses the experiences of disability from the perspective of individuals, families, healthcare professionals, and society as a whole. The material chosen for Kaleidoscope challenges and overcomes stereotypical, patronizing, and sentimental attitudes about disability. Although content always focuses on a particular aspect of disability, writers with and without disabilities are welcome to submit their work.

Mouth
http://www.mouthmag.com/

This thought-provoking magazine features investigative journalism, news, and interviews with disability rights activists, reserving some of its harshest criticism for the “helping professions.”  Mouth also publishes poetry and essays written by people with disabilities, and does not include commercial advertisements.

The Ragged Edge (formerly The Disability Rag)
http://www.ragged-edge-mag.com/

Ragged Edge is successor to the award-winning periodical, The Disability Rag. In Ragged Edge , and on their web site, you’ll find the best in today’s writing about society’s “ragged edge” issues: medical rationing, genetic discrimination, assisted suicide, long-term care, attendant services.  They cover the disability experience in America–what it means to be a crip living at the end of the 20th century.

Research in Social Science and Disability
http://www.socscinet.com/sociology/rssd/

Research in Social Science and Disability is an annual volume published by JAI Press/Elsevier. While not a standard periodical, it is devoted to the scholarly, social scientific analysis of significant issues in disability. The multidisciplinary approach permits contributors to explore the social origins of disability in society, and provides a basis for examining cross-cultural differences in approaches to disability, as well as the economic, social and psychological consequences for individuals, families and social institutions and organizations. This series will include research framed by a variety of theoretical perspectives and research methodologies.

The Review of Disability Studies: An International Journal
http://www.rds.hawaii.edu/

The Center on Disability Studies at University of Hawaii at Manoa announced the publication of this new journal. The Review will contain peer-reviewed research articles, essays, and bibliographies relating to the culture of disability and people with disabilities. It will also publish forums on disability topics brought together by forum editors of international stature. Poetry, short stories, creative essays, photographs, and artwork related to disability are also invited. Forms for subscriptions and submission guidelines are available to download on the above web site.

SPECIAL/FEATURE ISSUES OF PERIODICALS

This section contains information on selected special or feature issues of periodicals related to Disability Studies published in journals and periodicals that may not be typical Disability Studies publications.

Blackford, K., Cuthbertson, C., Odette, F., & Ticoll, M. (1993, Summer). Women and disability [Feature issue]. Canadian Women’s Studies, 13 (4).

The editors of this issue are feminists, most of whom have disabilities, who identify the contributors as feminist disability theorists who insist that the personal is political. The issue includes articles by women from backgrounds that vary in class, race, ethnicity, and sexual or gender orientation in order to highlight the diversity in the lives of women with disabilities. Many of the authors raise questions that challenge traditional feminist thinking (about the body, about reproductive rights, about objectification and about language, for example), while others relate personal experiences or provide information on studies conducted with women with disabilities.

Breckenridge, C. A., & Vogler, C. (Eds.). (2001, October). The critical limits of embodiment: Reflections on disability criticism [Special issue]. Public Culture, 13(3).

Disability Studies, a new field of inquiry in the human sciences, has the potential to unsettle many basic assumptions about the body, citizenship, capital, and beauty. This special issue of Public Culture explores disability criticism, an emergent subfield within Disability Studies.

Couser, G. T. (2000, June). Forum: The empire of the “normal”: A forum on disability and self-representation. American Quarterly, 52( 2).

This forum assesses the accessibility and value of autobiography (and related genres) to people with disabilities.

Davis, L., & Linton, S. (1995, Fall).  Disability Studies [Feature issue]. Radical Teacher, No. 47.

Radical Teacher is a “socialist and feminist journal on the theory and practice of teaching.” It is an independent magazine for educational workers at all levels and in every kind of institution. This feature issue is one of the first to examine and frame Disability Studies within several academic disciplines.

Dorn, M., & Metzel, D. (2001, Fall). Theme: Disability geography: Commonalities in a world of differences. Disability Studies Quarterly, 21 (4).

Literature on disability within the field of geography is rapidly expanding. This issue brings together the work of 17 international disability geography scholars, organized into two key themes: Voices and The Paradoxes of Policy.

Farnall, O., & Haller, B. (Eds.). (2001, Spring). Theme: Advertising and people with disabilities. Disability Studies Quarterly, 21 (2).

Symposium on advertising and how it effects and is influenced by people with disabilities.

Tremain, S. (1998, Summer). Theme: Disability Studies queered. Disability Studies Quarterly, 18(3).

This issue of Disability Studies Quarterly includes papers and reviews focusing on lesbians, gay men, bisexual people and transgendered people with disabilities. The editor contends that analyses in Disability Studies have not considered the differences made by sexual variation, that there are areas that are neglected when the perspectives of those who are not heterosexual or traditionally gendered are not taken into account. Her hope is that this issue will suggest ways that Disability Studies could be improved by employing sexual orientation and sexual identity as analytical categories.  The essays in the issue focus on forms of discrimination experienced by disabled queers from within lesbian and gay communities, and on how lesbians and gays with disabilities negotiate identity. Additionally, a few of the reviews focus on books and films about lesbians, gay men, bisexual people and transgendered people with disabilities.

Hall, K. Q. (Ed.). (2003, Fall). Feminist Disability Studies [Special issue]. NWSA Journal, 14(3).

NWSA Journal is the official publication of the National Women’s Studies Association and publishes the most up-to-date, interdisciplinary, multicultural feminist scholarship linking feminist theory with teaching and activism.  This special issue focuses on feminist Disability Studies that draws upon and challenges analyses of bodily norms, identity, accommodation, representation, and oppression in both feminism and Disability Studies. Feminist Disability Studies also provides a theoretical framework for expanding an understanding of historical and ideological connections between marginalized embodiments, and the essays included in this volume address many of these themes.

Kittay, E., Silvers, S., & Wendell, S. (Eds.). (2001). Special issue: Feminism and disability. Hypatia, 16(4).

Hypatia is a journal for scholarly research concerning philosophy and women’s studies. The essays in this issue address theoretical dimensions of understanding women’s disability identity and seek to stimulate philosophical thought about these situations. Among the excellent papers offered for Hypatia’s exploration of women and disability were works with a different focus, one more concerned with concrete and practical aspects of living with disability. The second part of this double issue examines personal and political practical themes of disabled women’s lives, in both North America and other parts of the globe.

Kittay, E., Silvers, S., & Wendell, S. (Eds.). (2002). Feminism and disability II. Hypatia, 17(3).

This is Part II of a special issue on feminism and disability. The articles in Part II have a more practical orientation. The authors, who offer perspectives on disability from India, Australia, the United States, and Canada, all bring personal experience and practical concerns to their philosophical inquiry.

Kasnitz, D., & Shuttleworth, R. P. (Eds.). (2001, Summer). Theme: Engaging anthropology in Disability Studies. Disability Studies Quarterly, 21 (3).

This feature issue presents papers that seek to engage the two fields of anthropology and Disability Studies.

Lillie, T. (Ed.). (2000, Fall). Theme:  Disability rights: From childhood to adulthood. Disability Studies Quarterly, 20 (4).

This symposium offers some diverse perspectives on disability, generation and the life course, and some of the ways in which such an approach can be applied to Disability Studies and disability research in an international context.

McRuer, R., & Wilkerson, A. L. (Eds.) (2003). Desiring disability: Queer theory meets Disability Studies [Special issue]. GLQ: A Journal of Lesbian and Gay Studies, 9(1-2).

GLQ is the leading journal in lesbian and gay studies. This special issue marks the first time that a major academic journal has devoted itself to the conjunction of queer and disabled theorizing.

Morse, T. A., Lewiecki-Wilson, C., Lindblom, K., Dunn, P. A., Brueggemann, B., Kleege, G., Stremlau, T. M., Erin, J., & Wilson, J. C. (2003). Symposium: Representing disability rhetorically.  Rhetoric Review, 22 (2), 154-202.

The purpose of this symposium is to encourage discussion and scholarship in the area of Disability Studies, specifically aimed towards “rhetoricians.” It offers works in various disciplines all contributing to Disability Studies.

Stodden, R., & Dowrick, P. (Eds.). (2001, Winter). Theme: Supporting students with disabilities in postsecondary education. Disability Studies Quarterly, 21(1).

This special edition of Disability Studies Quarterly describes a sample of emerging work supported by and related to the efforts of the National Center for the Study of Postsecondary Educational Supports (NCSPES). Research has begun to shed new light upon the barriers faced by individuals with disabilities seeking to access and participate in postsecondary education programs.

ORGANIZATIONS

Association on Higher Education and Disability (AHEAD)
P.O. Box 540666
Waltham, MA 02454
Phone: 781-788-0003 (v/t)
Fax: 781-788-0033
E-mail: AHEAD@ahead.org
http://www.ahead.org/
AHEAD is an international organization of professionals committed to the full participation of individuals with disabilities in higher education. The Association provides programs, workshops, publications, and conferences that promote “excellence through education, communication and training.”

Center on Disability Studies
University of Hawai’i at Manoa
1776 University Avenue
Honolulu, HI  96822
Phone: 808-956-9972
Fax: 808-956-3162
http://www.cds.hawaii.edu/

The Center on Disability Studies (CDS) was established in 1988 as the Hawaii University Affiliated Program at the University of Hawaii at Manoa, and is part of a National Network of University Centers on Excellence in Disabilities focused upon Education, Research, and Services.

Center on Human Policy
Syracuse University, School of Education
805 South Crouse Avenue
Syracuse, NY 13244-2280
Phone: 315-443-3851(voice)
TTY: 315-443-4355
FAX: 315-443-4338
Toll free: 1-800-894-0822
E-Mail:
thechp@sued.syr.edu
http://thechp.syr.edu/

The Center on Human Policy (CHP) is a Syracuse University based policy, research, and advocacy organization involved in the national movement to insure the rights of people with disabilities. Since its founding, the Center has been involved in the study and promotion of open settings (inclusive community opportunities) for people with disabilities. The Center is involved with a broad range of local, statewide, national and international activities, including policy studies, research, information and referral, advocacy, training and consultation, and information dissemination.

Institute for Disability Culture
Steven E. Brown, Founder
Institute on Disability Culture
3029 Lowrey Ave., Apt. P-2104
Honolulu, HI 96822-1813 USA
E-mail:
Sbrown8912@aol.com
http://www.hometown.aol.com/sbrown8912/

The Institute’s mission since 1994 has been to promote pride in the history, activities, and cultural identity of individuals with disabilities throughout the world.

Society for Disability Studies
Department of Disability and Human Development
University of Illinois at Chicago (MC 626)
1640 W. Roosevelt Rd. #236
Chicago, IL 60608-6904
Phone: 312-996-4664 (V/TTY)
Fax: 312-996-7743
http://www.uic.edu/orgs/sds/

For the past sixteen years, the Society for Disability Studies has worked to explore issues of disability and chronic illness from scholarly perspectives. Membership includes social scientists, health researchers, and humanities scholars as well as those active in the disability rights movement.

World Institute on Disability
510 16th Street, Suite 100
Oakland, California 94612
Voice: 510-763-4100
TTY: 510-208-9496
Fax: 510-763-4109
E-Mail: 
wid@wid.org
http://www.wid.org/

The World Institute on Disability (WID) is a nonprofit research, public policy and advocacy center dedicated to promoting the civil rights and full societal inclusion of people with disabilities. Organized by and for people with disabilities, WID brings a diverse disability perspective to public policy on health care, technology and employment.

SPECIAL INTEREST GROUPS (SIGs)

This is a listing of different professional organizations in a wide range of disciplines that have Special Interest Groups (SIGs) concerning disability.

Association for Education in Journalism and Mass Communication (AEJMC), Media & Disability Interest Group
http://www.towson.edu/~bhalle/aejdis.html

This SIG seeks to promote academic research into disability issues and mass media; to reach out to the disability community at each AEJMC annual meeting location; promote architectural, communication, and attitudinal accessibility for people with disabilities at AEJMC annual meetings and all AEJMC activities; and promote equal treatment and the necessary accommodations for students and professors with disabilities in university settings as outlined in the 1990 Americans with Disabilities Act.

American Bar Association, Commission on Mental and Physical Disability Law
http://www.abanet.org/disability/

This is the primary entity within the American Bar Association focusing on the law-related concerns of persons with mental and physical disabilities. Its mission is “to promote the ABA’s commitment to justice and the rule of law for persons with mental, physical, and sensory disabilities and their full and equal participation in the legal profession.” The Commission’s members include lawyers and other professionals, many of whom have disabilities.

American Education Research Association (AERA) SIG: Disability Studies in Education
http://ced.ncsu.edu/2/dse/

Purpose:  To encourage Disability Studies in education; to provide an organizational vehicle for networking among Disability Studies researchers in education; and to increase the visibility and influence of Disability Studies among all educational researchers.

Association of American Geographers (AAG) Disability Specialty Group (DSG): The Disability and Geography International Network (DAGIN)
http://courses.temple.edu/neighbor/service/disability&geography.html

To foster communication among members and to encourage research, education, and service that addresses issues of disability and chronic illness, this group will provide support and advocate with disabled members of the Association while working closely with other specialty groups to promote common interests and develop intradisciplinary and interdisciplinary projects.

Association on Higher Education and Disability (AHEAD) SIGs
http://www.ahead.org/resources/siglist.html

The Association on Higher Education and Disability (AHEAD) is a national organization for disability service providers in higher education. AHEAD SIGs, or Special Interest Groups, are AHEAD members organized around an interest or concern. SIGs provide leadership to the AHEAD membership by providing information and referral, organizing professional development opportunities, and networking around a particular topic.  AHEAD has had SIGs on Disability Studies and Women with Disabilities; however, these SIGs are currently inactive.

Disability Studies in the Humanities
http://www.georgetown.edu/crossroads/interests/ds-hum

DS-HUM is intended to serve as a forum and bulletin-board for those interested and involved in Disability Studies across the broad range of humanities scholarship, not just American Studies. In addition to serving as a connecting point for scholars, teachers and students in this field of study, this website contains announcements, directories, bibliographies, syllabi and other relevant materials.

Graduate and Professional Students (GAP)
http://www.ahead.org/resources/siglist.html

The purpose of this AHEAD special interest group is to help bridge the GAP experienced by many service providers and students with disabilities in graduate and professional programs. The group’s goal is to help answer questions about identification, accommodations, licensure and certification issues, transition issues and faculty awareness.

Modern Language Association, Committee on Disability Issues in the Profession
http://www.mla.org/comm_disability/

Considers the needs and interests of scholars who have disabilities and addresses a variety of related issues, including access to the convention and scholarship in the field of Disability Studies.

National Communication Association, Disability Caucus
http://www.towson.edu/~bhalle/ncadis.html

NCA is a non-profit organization of researchers, educators, students, and practitioners, whose academic interests span all forms of human communication. The two goals behind the establishment of the NCA’s Caucus on Disability Issues are: (1) to promote greater participation by people with disabilities in NCA and the discipline at large; (2) to encourage quality scholarship on issues concerning disability and communication.

National Women’s Studies Association, Disability Caucus
http://www.nwsa.org/disc.htm

NWSA supports and promotes feminist/womanist teaching, learning, research, and professional and community service at the pre-K through post-secondary levels and serves as a locus of information about the inter-disciplinary field of women’s studies for those outside the profession.  There are several NWSA caucuses whose major goals involve representation of point(s) of view currently recognized by NWSA, with one focusing on disability.

Society for Medical Anthropology, Disability Research Interest Group
http://www.medanthro.net/research/disability/index.html

The Society for Medical Anthropology supports several committees and caucuses, which address the unique interests, and needs of its membership. These Special Interest Groups offer linkages to scholars with shared Internet concerns and sponsor informational newsletters, award competitions and projects.  The Disability Research Interest Group is still in the process of forming.

INTERNET RESOURCES

Listservs & Internet Mailing Lists


Anthropology and Disability Research
http://groups.yahoo.com/group/AnthropologyDisabilityResearch/

Discussion group for the mutual engagement of anthropology and Disability Studies.

Disability Culture Manifesto
http://www.dimenet.com/disculture/manifesto

Free e-newsletter on disability culture produced by Steve Brown at the Institute on Disability Culture. To receive this newsletter, send the following message to majordomo@tripil.com : subscribe disculture

Disability-Research Discussion List
http://www.leeds.ac.uk/disability-studies/discuss.htm

This is an international e-mail discussion list administered at the DRU by Mark Priestley. The list (started in December 1994) is the largest of its kind in the world, and provides a forum for discussion on all aspects of disability research–both theoretical and practical. The list is intended for all those interested in research as it affects disabled people both in the UK and internationally. It provides a forum for the exchange of ideas, information and news, particularly among researchers working within a social model of disability. The list provides an opportunity for researchers, students and disabled people to share their ideas, experiences and research findings. It is also an excellent place to ask questions or seek information.

DS-HUM Listserv
http://www.mith2.umd.edu:8080/disc/resources/index.jsp#listserv

DS-HUM serves as a moderated forum for discussion and a bulletin board for those interested and involved in Disability Studies across the broad range of humanities scholarship.

DS-Teaching Discussion List
http://faculty.washington.edu/dlang/ds-teaching.html

DS-Teaching invites on-line conversation among people who have any degree of involvement in teaching Disability Studies–teachers or prospective teachers, students or prospective students, authors or artists whose works are used in the class room, activist-scholars and activists who are not involved in scholarship, and anyone else with a pedagogical interest in the field.

GEOGABLE
http://courses.temple.edu/neighbor/service/

GEOGABLE
is a discussion list for scholars in the humanities and social sciences who are interested in geographical and built environment issues as they relate to persons with disabilities and/or chronic illnesses. Although GEOGABLE is the official discussion list of the Disability Specialty Group (DSG) of the Association of American Geographers, membership in the specialty group is not required for becoming a member of the GEOGABLE list and contributing to our discussions. The GEOGABLE list is being served by the Computing Center at the University of Kentucky, and is moderated by Mike Dorn.

H-Disability
http://www2.h-net.msu.edu/~disabil/

H-Disability
is a scholarly discussion group that explores the multitude of historical issues surrounding the experience and phenomenon of “disability.” H-Disability was established in response to the growing academic interest and expanding scholarly literature on issues of disability throughout the world. This group is a part of H-Net Humanities & Social Sciences Online.

Web Sites

The Disability Archive UK
http://www.leeds.ac.uk/disability-studies/archiveuk/index.html

The aim of the Disability Archive UK is to provide people with disabilities, students and scholars with an interest in this and related fields, access to the writings of those disability activists, writers and allies whose work may no longer be easily accessible in the public domain. It is hoped that the documents available via the Archive will help to inform current and future debates on disability and related issues.

Disability History Museum
http://www.disabilitymuseum.org

This web site is a virtual home to a searchable, theme-based digital collection of documents and images related to disability history in the United States. The Disability History Museum’s mission is to promote understanding about the historical experiences of people with disabilities by recovering, chronicling, and interpreting their stories.

Disability Social History Project
http://www.disabilityhistory.org/

This site looks at the role people with disabilities have played in history, how they have been treated throughout time, and significant events in the history of disability civil rights.

Disability Studies in the Humanities (DS-HUM)
http://www.georgetown.edu/crossroads/interests/ds-hum/dshowto.html

DS-HUM is intended to serve as a forum and bulletin-board for those interested and involved in Disability Studies across the broad range of humanities scholarship, not just American Studies. In addition to serving as a connecting point for scholars, teachers and students in this field of study, the listproc will have a homepage on the Crossroads website containing announcements, directories, bibliographies, syllabi and other relevant materials.

Disability Studies Web Ring
http://www.ringsurf.com/netring?ring=disstudies;action=addform

This web ring is intended to bring together web sites that contain scholarly articles, essays, papers and/or other thought provoking information that would be of interest to Disability Studies students and researchers.

DISC – A Disability Studies Academic Community
http://www.mith2.umd.edu:8080/disc/index.html

The DISC website is an international, interdisciplinary, user-generated, digital forum providing support, collegial networks, and information that sustains a Disability Studies academic community and promotes Disability Studies in a humanities focus.

Institute on Disability Culture
http://www.dimenet.com/disculture

The mission of the Institute on Disability Culture is the promotion of pride in the history, activities, and cultural identity of individuals with disabilities throughout the world. The purpose of the web site is to provide information about disability culture and to share examples of disability culture.

The Museum of disABILITY History
http://www.people-inc.org/museum

The Museum of disABILITY History is dedicated to the collection, preservation and display of artifacts pertaining to the history of people with disabilities. Located in Buffalo, New York, and on the World Wide Web, the museum offers educational exhibits and activities that expand community awareness.

RESOURCES FOR TEACHING DISABILITY STUDIES

This section of this information package identifies books and articles related to Disability Studies that can be used in courses in different academic disciplines. Annotations of most of these readings can be found in the section on Disability Studies Books, Chapters, and Articles .

Anthropology

Groce, N. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Cambridge, MA: Harvard University Press.

Ingstad, B., & Whyte, S. R. (Eds.). (1995). Disability and culture. Berkeley: University of California Press.

Murphy, R. F. (1987). The body silent: An anthropologist embarks on the most challenging journey of his life: Into the world of the disabled. London and New York: W.W. Norton.

Arts, Humanities, and Literature

Bérubé, M. (1996). Life as we know it:  A father, family, and an exceptional child. New York: Vintage Books.

Brueggemann, B. J. (1999).  Lend me your ear: Rhetorical constructions of deafness.  Washington, DC: Gallaudet University Press.

Crutchfield, S. & Epstein, M. (Eds.). (2003). Points of contact: Disability, art and culture [Corporealities: Discourses of Disability].  Ann Arbor: University of Michigan Press.

Davis, L. J. (1995).  Enforcing normalcy: Disability, deafness, and the body.  London & New York, NY: Verso.

Davis, L. J. (Ed.). (1997). The Disability Studies reader. New York: Routledge.

Davis, L. J. (2002). Bending over backwards: Disability, dismodernism & other difficult positions [Cultural Front]. New York: New York University Press.

Fries, K. (1997). Body, remember. New York: Plume.

Hershey, L.  (various dates).  Poems and Tapes: On the lawn , In the way, Dreams of a different woman (these are books of poetry); The prostitutes of Nairobi, You get proud by practicing (these are tapes of the author reading her poems).  Denver, CO: Author.

Kesey, K.  (1962). One flew over the cuckoo’s nest. New York: Signet.

Lubchenco, L. O., & Crocker, A. C. (1997). Bus girl: Poems by Gretchen Josephson. Cambridge, MA: Brookline Books.

Snyder, S. L., Brueggemann, B. J., & Garland-Thomson, R. (Eds.). (2002). Disability Studies: Enabling the humanities. New York: The Modern Language Association of America.

Thomson, R. G. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press.

Thomson, R. G. (2001).  Seeing the disabled: Visual rhetorics of disability in popular photography. In P. K. Longmore & L. Umansky (Eds.), The new disability history: American perspectives (pp. 335-374). New York: New York University Press.

Communications/Media/Journalism

Couser, G. T. (1997).  Recovering bodies: Illness, disability, and life writing.  Madison, WI: University of Wisconsin Press.

Hockenberry, J. (1995). Moving violations: War zones, wheelchairs, and declarations of independence. New York: Hyperion.

Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Times Books.

Gender Studies

Clare, E. (1999). Exile & pride: Disability, queerness, and liberation. Cambridge, MA: South End Press.

Deutsch, H., & Nussbaum, F. (Eds.). (2000).  “Defects”: Engendering the modern body [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press.

Fawcett, B. (2000). Feminist perspectives on disability.   London: Pearson Education.

Fine, M., & Asch, A. (1988). Women with disabilities: Essays in psychology, culture, and politics [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

Garland-Thomson, R. (1994). Redrawing the boundaries of feminist Disability Studies. Feminist Disability Studies, 20(3), 583-597.

Herndl, D. P. (1993). Invalid women: Figuring feminine illness in American fiction and culture, 1840-1940. Chapel Hill, NC: University of North Carolina Press.

Hillyer, B. (1993). Feminism and disability. Norman, OK: University of Oklahoma Press.

Keith, L. (Ed.). (1994). Mustn’t grumble:  Writings by disabled women. London: The Women’s Press.

Keith, L. (Ed.). (1996). What happened to you?  Writings by disabled women. New York: The New Press.

Keith, L. (2001). Take up thy bed and walk: Death, disability and cure in classic fiction for girls. New York, NY: Routledge.

Lloyd, M. (1992). Does she boil eggs?  Towards a feminist model of disability. Disability, Handicap & Society, 7(3), 207-221.

Lonsdale, S. (1990). Women and disability.  New York: St. Martin’s Press.

Meekosha, H. (1998).  Body battles: Bodies, gender, and disability. In T. Shakespeare (Ed.), Disability studies reader: Social science perspectives (pp. 163-180).  London & New York, NY: Cassell.

Morris, J. (1993). Feminism and disability. Feminist Review, 43 , 57-70.

Morris, J. (1992). Personal and political:  A feminist perspective on researching physical disability. Disability, Handicap & Society, 7(2), 157-166.

Morris, J. (1998). Pride against prejudice: Transforming attitudes to disabilities (Reprint ed.). North Pomfret, VT: Trafalgar Square.

Shakespeare, T., Gillespie-Sells, K., & Davies, D. (1996). The sexual politics of disability: Untold desires. London: Cassell Publications.

Tremain, S. (Ed.). (1996). Pushing the limits: Disabled dykes produce culture. London: Women’s Press.

Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. London and New York: Routledge.

Willmuth, M., & Holcomb, L. (1994). Women with disabilities: Found voices. Binghamton, NY: The Haworth Press, Inc.

General Disability Studies

Albrecht, G. L., Seelman, K. D., & Bury, M. (Eds.). (2001). Handbook of Disability Studies. Thousand Oaks, CA: Sage Publications.

Barnes, C., & Mercer, G. (2003). Disability [Key Concepts]. Cambridge, United Kingdom: Polity Press.

Barnes, C., Oliver, M., & Barton, L. (2002). Disability Studies today. Cambridge, UK: Polity Press.

Bogdan, R. (1988). Freak show: Presenting human oddities for amusement and profit. Chicago: University of Chicago Press.

Bogdan, R., & Biklen, D. (1977, March/April). Handicapism. Social Policy, 7(4), 14-19.

Campbell, J., & Oliver, M. (1996). Disability politics: Understanding our past, changing our future. London and New York: Routledge.

Charlton, J. I. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley, CA: University of California Press.

Corker, M. (1998).  Disability discourse in a postmodern world. In T. Shakespeare (Ed.), Disability studies reader: Social science perspectives (pp. 221-233).  London & New York, NY: Cassell.

Corker, M., & Shakespeare, T. (Eds.). (2002). Disability/postmodernity: Embodying disability theory. New York: Continuum.

Davis, L. J. (Ed.). (1997). The Disability Studies reader. New York: Routledge.

Davis, L. J. (2002). Bending over backwards: Disability, dismodernism & other difficult positions [Cultural Front]. New York: New York University Press.

Linton, S. (1998). Claiming disability: Knowledge and identity [Cultural Front]. New York: New York University Press.

Linton, S. (1998). Disability studies/Not Disability Studies. Disability & Society, 13(4), 525-540.

Nagler, M. (Ed.). (1993). Perspectives on disability (2nd ed.). Palo Alto, CA: Health Markets Research.

Oliver, M. (1990). The politics of disablement.  London: The MacMillan Press.

Oliver, M. (1996). Understanding disability: From theory to practice.   New York: Palgrave.

Shakespeare, T. (Ed.). (1998). The disability reader: Social science perspectives. London and New York: Cassell.

History

Baynton, D. C. (1996). Forbidden signs: American culture and the campaign against sign language. Chicago: University of Chicago Press.

Bragg, L. (2001).  Deaf world: A historical reader and primary sourcebook. New York: New York University Press.

Burch, S. (2002). Signs of resistance: American Deaf cultural history, 1900 to 1942.  New York: New York University Press.

Ferguson, P. (1994). Abandoned to their fate: Social policy and practice toward severely retarded people in America, 1820-1920 [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

Groce, N. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Cambridge, MA: Harvard University Press.

Lane, H. (1992). The mask of benevolence: Disabling the Deaf community. New York: Vintage Books.

Longmore, P. K., & Umansky, L. (Eds.). (2001). The new disability history: American perspectives [The History of Disability Series]. New York: New York University Press.

Matson, F. (1990). Walking alone and marching together: A history of the organized blind movement in the United States, 1940-1990 (1st ed.). Baltimore, MD: National Federation of the Blind. Also available in public domain on the website of the National Federation of the Blind at: http://www.nfb.org/books/books1/wamtc.htm

O’Brien, R. (2001). Crippled justice: The history of modern disability policy in the workplace. Chicago: University of Chicago Press.

O’Connor, E. (2000).  Raw material: Producing pathology in Victorian culture. Durham, NC: Duke University Press.

Pernick, M. S. (1996). The black stork: Eugenics and the death of “defective” babies in American medicine and motion pictures since 1915. Oxford and New York: Oxford University Press, Inc.

Rothman, D. J. (1971). The discovery of the asylum: Social order and disorder in the new republic.  Boston: Little, Brown.

Scotch, R. K. (2001). From good will to civil rights: Transforming federal disability policy (2nd ed.) [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

Smith, J. D. (1985). Minds made feeble: The myth and legacy of the Kallikaks. Austin, TX: PRO-ED.

Stiker, H. (1999). A history of disability (W. Sayers, Trans.) [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press. (Original work published 1987).

Szasz, T. S. (1961). The myth of mental illness: Foundations of a theory of personal conduct. New York: Delta and Szasz, T. S. (1970). The manufacture of madness. New York: Delta.

Trent, J. W. (1994). Inventing the feeble mind: A history of mental retardation in the United States [Medicine in Society]. Berkeley: University of California Press.

Wolfensberger, W. (1975). The origin and nature of our institutional models (Rev. ed.). Syracuse, NY: Human Policy Press.

Law and Public Policy

Barnartt, S., & Scotch, R. (2001). Disability protests: Contentious politics, 1970-1999. Washington, DC: Gallaudet University Press.

Blatt, B., & Kaplan, F. (1974). Christmas in purgatory: A photographic essay on mental retardation. Syracuse, NY: Human Policy Press.

Braddock, D. (Ed.). (2002). Disability at the dawn of the 21st Century and the state of the states. Washington, DC:  American Association on Mental Retardation.

Campbell, J., & Oliver, M. (1996). Disability politics: Understanding our past, changing our future. London and New York: Routledge.

Charlton, J. I. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley, CA: University of California Press.

Ferguson, R. J. (2001, July). We know who we are: A history of the blind in challenging educational and socially constructed policies–A study in policy archeology [Critical Concerns in Blindness Series, No. 1].  San Francisco: Caddo Gap Press.

Johnson, M. (2003). Make them go away: Clint Eastwood, Christopher Reeve & the case against disability rights. Louisville, KY: The Advocado Press.

Krieger, L. H. (2003). Backlash against the ADA: Reinterpreting disability rights [Corporealities: Discourses of Disability]. Ann Arbor, MI: University of Michigan Press.

Longmore, P. K. (2003). Why I burned my book and other essays on disability [American Subjects]. Philadelphia: Temple University Press.

Minow, M. (1990). Making all the difference: Inclusion, exclusion, and American law. Ithaca, NY: Cornell University Press.

Pelka, F. (1997). The ABC-CLIO companion to the disability rights movement. Santa Barbara, CA: ABC-CLIO, Inc.

Rothman, D. J., & Rothman, S. M. (1984). The Willowbrook wars: A decade of struggle for social justice. New York: Harper & Row, Publishers.

Russell, M. (1998). Beyond ramps: Disability at the end of the social contract. Monroe, ME: Common Courage Press.

Scotch, R. K. (2001). From good will to civil rights: Transforming federal disability policy (2nd ed.) [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Times Books.

Philosophy/Religion/Theology

Eiesland, N. (1997). The disabled God: Toward a liberation theology of disability. Nashville, TN: Abingdon Press.

Reinders, H. (2000). The future of the disabled in liberal society: An ethical analysis. Notre Dame, IN: University of Notre Dame Press.

Szasz, T. S. (1961). The myth of mental illness: Foundations of a theory of personal conduct. New York: Delta and Szasz, T. S. (1970). The manufacture of madness. New York: Delta.

Sociology2

Barnes, C., Mercer, G., & Shakespeare, T.  (1999). Exploring disability: A sociological introduction. Cambridge, UK: Polity Press.

Bogdan, R. (1988). Freak show: Presenting human oddities for amusement and profit. Chicago: University of Chicago Press.

Bogdan, R., & Taylor, S. J.  (1976). The judged, not the judges: An insider’s view of mental retardation.  American Psychologist, 31(1), 47-52.

Bogdan, R., & Taylor, S. J. (1989). Relationships with severely disabled people: The social construction of humanness. Social Problems, 36 (2), 135-148.

Bogdan, R., & Taylor, S. J. (1994). The social meaning of mental retardation: Two life stories. New York: Teachers College Press.

Dexter, L. A. (1960). On the politics and sociology of stupidity in our society.  Paper presented at the American Association on Mental Deficiency.  Reprinted in Mental Retardation , 1994, 32(2), 152-55, with an introduction by Philip Ferguson.

Goffman, E.  (1961).  Asylums: Essays on the social situation of mental patients and other inmates.  Garden City: NY: Anchor Books.

Goffman, E.  (1963).  Stigma: Notes on the management of spoiled identity.  Englewood Cliffs, NJ: Prentice-Hall.

Goode, D. (1994). A world without words: The social construction of children born deaf and blind [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

Linneman, D. R. (2001). Idiots: Stories about mindedness and mental retardation. New York: Peter Lang.

Mercer, J. R. (1973). Labeling the mentally retarded: Clinical and social system perspectives on mental retardation.  Berkeley, CA: University of California Press.

Nagler, M. (Ed.). (1993). Perspectives on disability (2nd ed.). Palo Alto, CA: Health Markets Research.

Roth, J. A. (1963). Timetables: Structuring the passage of time in hospital treatment and other careers.  Indianapolis, IN: Bobbs-Merrill.

Schlesinger, L., & Taub, D.E. (Eds.). (2003). Instructional materials for sociology and Disability Studies. Washington, DC: ASA Teaching Resources Center.

Scott, R. A. (1969). The making of blind men: A study of adult socialization. New York: Russell Sage Foundation.

Shakespeare, T. (Ed.). (1998). The disability reader: Social science perspectives. London and New York: Cassell.

Trent, J. W. (1994). Inventing the feeble mind: A history of mental retardation in the United States [Medicine in Society]. Berkeley: University of California Press.

INFORMATION PACKAGE ON DISABILITY STUDIES

PREPARED
BY
PERRI HARRIS AND LORI LEWIN

August 1998

Center on Human Policy
Syracuse University
805 South Crouse Avenue
Syracuse, NY 13244-2280

This information package includes a reprint that we are unable to produce here on our web site. We have indicated contact information for this resource, or you can obtain a complete copy of this information package by contacting Center on Human Policy.

This information package was prepared with support from the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), awarded to the Center on Human Policy, Division of Special Education and Rehabilitation, School of Education, Syracuse University under Cooperative Agreement No. H133D50037. The opinions expressed herein are those solely of the authors and do not necessarily reflect the position or the policy of the U.S. Department of Education and no official endorsement should be inferred.

TABLE OF CONTENTS

INTRODUCTION

Over the past several decades, what we now refer to as “disability studies” has been a powerful influence on policy and practice in regards to people with disabilities. Disability studies has evolved as a means of addressing how people with disabilities have been treated historically and how they continue to be treated. Once seen through a medical model as people who are sick and in need of a cure, through a sociological model where people with disabilities are labelled and stigmatized by others, or through a psychological model where their experiences have been individualized and pathologized, people with disabilities are now being seen through different perspectives. Although medical and psychological models are still present, they are being resisted by a relatively new field called disability studies, its philosophy being that disability is a social construction. While disability studies does not deny that there are differences, either physical or mental, between people, they argue that “the nature and significance of these differences depend on how we view and interpret them” (Bogdan and Taylor, 1994). Therefore, rather than seeking to “fix” a person or to separate him or her from the rest of society, a disability studies perspective would seek to problemitize society rather than the individual. The solution therefore lies not in the person, but rather in breaking down the barriers that limit people with disabilities from full participation in their communities and in society in general.

Disability studies seek to examine the social, economic, and political forces that for years have served to marginalize and oppress people with disabilities. The field has emerged over the last several years, drawing on theories and perspectives from sociology, social science, women’s studies, cultural studies, and education. It often focuses on the idea that people with disabilities are a minority group who has been discriminated against. In this sense, the study of disability is similar to the study of race, class, and gender inequalities. In addition, disability studies provide the intellectual and methodological tools needed to create disability research and policy. The theories and philosophies of disability studies can then be applied to real issues in the law, in community inclusion, and in public policy.

The field of disability studies continues to grow and change. Recent additions to the field such as feminist disability studies and cultural studies have challenged “traditional” disability studies, and have forced the field to be more inclusive of different perspectives and positions in society. Moreover, disability studies most often focuses on issues around people with physical, rather than cognitive disabilities. One major challenge for the future of disability studies is the inclusion of the experiences of people with cognitive disabilities and how they shape this emerging field.

This package provides current information about the field of disability studies. In order to address this next challenge to disability studies, we have annotated very recent books (and just a few journal articles) about disability studies. They are divided into the following sections: disability studies texts, feminist disability studies, personal narratives/autobiographies, and movies and documentaries. Next, we have included a number of academic programs around the country which offer coursework and degrees in disability studies, as well as a list of journals and magazines and membership societies all pertaining to disability studies. Following this is a small section on Internet resources on disability studies. At the end, we have included an article by Steve Taylor from Disability Studies Quarterly regarding the construct of mental retardation and disability studies. Also included in this reprint is a selected annotated bibliography that includes information on a number of books that address the same issue. The last section is a reprint of several articles from Radical Teacher, which recently devoted a large section of its publication to the field of disability studies.

Reference

Bogdan, R., & Taylor, S. J. (1994). The social meaning of mental retardation: Two life stories. New York: Teachers College

Disability Studies Texts

The following section is comprised of books that could be used as “text books” for a disability studies course. Most of them are edited books that cover a variety of topics such as disability rights, identity politics, cultural studies and disability, social perspectives on disability, and perspectives of people with disabilities. Also included are a number of fictional pieces and poetry. It is worthy of note that the majority of this material is written from the perspective of or includes the perspective of only those with physical disabilities. Unfortunately, over the past several years, “texts” such as these which include developmental disability and disability studies have not been published. For a disability studies perspective (from less recent texts) which incorporates developmental disabilities, see the annotations by Steve Taylor and Perri Harris which are located at the end of this information packet.

TITLE: Nothing about us without us: Disability oppression and empowerment

AUTHOR: Charlton, J. I.

PUBLICATION INFORMATION: 1998

University of California Press
2120 Berkeley Way
Berkeley, CA 94720
FAX 510-643-7127
http://www-ucpress.berkeley.edu/

The author uses a disability rights standpoint to discuss the international oppression of people with disabilities. He provides a theoretical framework for understanding disability oppression not as something that has come from the attitudes of people without disabilities, but because of systems and structures of oppression from which these attitudes stem. He uses interviews with disability rights activists from around the world to back his argument.

TITLE: Speechless: Facilitating communication for people without voices

AUTHOR: Crossley, R.

PUBLICATION INFORMATION: 1997

Dutton
Penguin USA
375 Hudson Street
New York, NY 10014
http://www.penguin.com/

Rosemary Crossley has been a pioneer of and outspoken advocate for facilitated communication since the 1970s. Her latest book, Speechless: Facilitating communication for people without voices, is an in-depth look at the experiences of 18 individuals who use facilitated communication. She describes the frustrations and complexities they face in their attempt to make themselves understood by others in their environment. She also explains the process of using facilitated communication, answering many of the questions raised about FC and demystifying many of the aspects of it that have troubled others.

TITLE: The disability studies reader

AUTHOR: Davis, L. J. (Ed.).

PUBLICATION INFORMATION: 1997

Routledge
29 West 35th Street
New York, NY 10001
212-216-7800
FAX 212-564-7854
http://www.thomson.com/routledge

This edited reader is a collection of classic and new essays, as well as fiction and poetry, in the field of disability studies. This perspective places disability in a political, social, and cultural context that theorizes the construction of disability in this society. The authors address such areas as feminist theories of disability, the construction of deafness, and disability as metaphor. The book is divided into seven sections, including historical perspectives, politics of disability, stigma and illness, gender and disability, disability and education, disability and culture, and fiction and poetry. This is progressive reading, but it should be of note that it is traditional in the sense that disability studies translates to “physical disability studies” and there is little mention of developmental disability.

TITLE: Staring back: The disability experience from the inside out

AUTHOR: Fries, K. (Ed.).

PUBLICATION INFORMATION: 1997

Plume
Penguin Putnam Inc.
375 Hudson Street
New York, NY 10014
http://www.penguin.com/

This book, edited by Kenny Fries, explores the experience of disability through writings by contributors who have disabilities. The collection includes nonfiction, poetry, fiction, and drama by such authors as Nancy Mairs, John Hockenberry, Anne Finger, Adrienne Rich, Mark O’Brien, and Marilyn Hacker. Each chapter explores disability not as something that limits one’s life, but as an experience all its own. Fries considers the theme of this edited book as one of human connection, “connection with the past, connection with one another, connection with our bodies, connection with ourselves.”

TITLE: The disabled God: Toward a liberation theology of disability

AUTHOR: Eiesland, N.

PUBLICATION INFORMATION: 1997

Abingdon Press
201 Eighth Ave. South
P. O. Box 801
Nashville, TN 37202-0801
1-800-251-3320

Through this book, Eiesland, who became disabled as a child when she had polio, helps the reader to see how the “hidden history” of conventional bodies living ordinary lives with grace and dignity, disgust and illusion, can make for both a theological and pastoral contribution. Arguing for a liberation theology, she calls on us to move away from our defining of people with disabilities as people who need to adjust to a minority group that is subject to social stigmatization. While her examples tend to be based on the experiences of people with physical disabilities, what she has to say also is insightful for those working to include people with developmental disabilities in faith communities.

TITLE: Disability and culture

AUTHORS: Ingstad, B., & Whyte, S. R. (Eds.).

PUBLICATION INFORMATION: 1995

University of California Press
2120 Berkeley Way
Berkeley, CA 94720
FAX 510-643-7127
http://www-ucpress.berkeley.edu/

This edited book takes a global look at disability. Each chapter reflects understandings of disability from different cultures. Its anthropological focus examines the relationship between disability and culture, explaining disability in terms of social processes from a multicultural perspective. Contributing authors, who have done research in places such as Borneo, Kenya, Uganda, Nicaragua, as well as Europe and North America, explore the meanings of different types of disabilities to different cultures, and seek to understand the assumptions about humanity and personhood derived from their understandings of disability.

TITLE: Claiming disability: Knowledge and identity

AUTHOR: Linton, S.

PUBLICATION INFORMATION: 1998

New York University Press
70 Washington Square South
New York, NY 10012-1091
1-800-996-6987
FAX 212-995-3833
mailto:orders@nyupress.nyu.edu
http://www.nyupress.nyu.edu/

In this new book, Simi Linton studies disability in relation to identity. She argues that disability studies must understand the meanings people make of variations in human behavior, appearance, and functioning, not simply acknowledge that these variations “exist.” Linton explores the divisions society constructs between those labeled disabled and those who are not. She avoids a medicalized discussion of disability and promotes the notion that people with disabilities need to claim their identities as disabled and as contributing members to the understanding of disability as a socio-political experience.

TITLE: Disability studies/Not disability studies

AUTHOR: Linton, S.

PUBLICATION INFORMATION: 1998

Disability & Society, 13(4), 525-540.

In this article, Simi Linton seeks to define the boundaries between what should be considered disability studies and what should not. For reasons that she outlines, she proposes that curriculum and research that emphasize intervention should be viewed as separate from disabilities studies, which is a socio-political-cultural examination of disability. Linton advocates a liberal arts-based model similar to that which frames women’s studies and African-American studies.

TITLE: End results and starting points: Expanding the field of disability studies

AUTHORS: Makas, E., & Schlesinger, L. (Eds).

PUBLICATION INFORMATION: 1996

Society for Disability Studies
c/o Robert Scotch
School of Social Science
University of Texas
Box 830688, Mail Station GR3.1
Richardson, TX 75083-0688
http://www.wipd.com/sds/

This edited book is comprised of chapters from extended abstracts of some of the presentations given at the Society for Disability Studies in Rockville Maryland in 1994. The authors discuss numerous topics relating to disability studies, although the focus is almost exclusively physical disabilities. The book is divided into sections, including: Disabling and Nondisabling Images of Disability, Family Reactions to Disability, Cultural Differences in Response to Disability, Acknowledging Challenges to Self Determination, A Progress Report on the ADA, Increasing Access to Services, Designing Relevant Research, Expanding Approaches to Disability, Contact and Communication as Vehicles for Change, Self Definition and Self Support, and The Power of Community as an Agent of Social Change.

TITLE: The body and physical difference: Discourses on disability

AUTHORS: Mitchell, D. T., & Snyder, S. L. (Eds.)

PUBLICATION INFORMATION: 1997

The University of Michigan Press
839 Greene Street, P.O. Box 1104
Ann Arbor, Michigan 48106-1104
mailto:umpress-www@umich.edu
http://www.press.umich.edu/

This edited book by Mitchell and Snyder seeks to introduce disability studies to the humanities by exploring how writers have used physical and cognitive disabilities in literature. The chapters explore how disability is seen in our culture in relation to “aberrance” and “normalcy,” and explores the meanings of health, the construction of the body, citizenship, and morality in relation to disability. The authors present a variety of literary perspectives in two parts. Part I is “Representations in History,” and chapters include such topics as “Constructions of Physical Disability in the Ancient Greek World: The Community Concept” by Martha Edwards; “Defining the Defective: Eugenics, Aesthetics, and Mass Culture in Early Twentieth-Century America” by Martin S. Pernick; and “Conspicuous Contribution and American Cultural Dilemmas: Telethon Rituals of Cleansing and Renewal” by Paul K. Longmore. Part II is “A History of Representations,” and includes chapters such as “Feminotopias: The Pleasures of ‘Deformity’ in Mid-Eighteenth-Century England” by Felicity A. Nussbaum; “The ‘Talking Cure’ (Again): Gossip and the Paralyzed Patriarchy” by Jan Gordon; and Disabled Women as Powerful Women in Petry, Morrison, and Lorde: Revising Black Female Subjectivity” by Rosemarie Garland Thomson.

TITLE: Perspectives on disability (Second Edition)

AUTHOR: Nagler, M. (Ed.).

PUBLICATION INFORMATION: 1993

Health Markets Research
851 Moana Court
Palo Alto, CA 94306

In this second edition edited by Mark Nagler, he once again explores the meaning of disability in our society. Using an interdisciplinary perspective, he offers articles by sociologists, psychologists, therapists, and others to explore the ways in which disability is constructed and understood. The book includes a foreword by Evan Kemp Jr. and an introduction by Nagler. He divides the book into the following sections: “What it means to be disabled,” “Society and disability,” “The family and disability,” “Sexuality and disability,” “Medical and psychological issues and disability,” “Education, employment, social planning and disability,” and “Legal and ethical issues and disability.” The selections for this second edition are good, but there are not many articles relating to people with developmental disabilities. This is the one main weakness of this text.

TITLE: The ABC-CLIO companion to the disability rights movement

AUTHOR: Pelka, F.

PUBLICATION INFORMATION: 1997

ABC-CLIO, INC
130 Cremona Drive, P.O. Box 1911
Santa Barbara, CA 93116-1911
http://www.abc-clio.com/

This text is a general introduction to the disability rights movement and the people and court cases that support or challenge it. It includes entries on such people as Ed Roberts and Judy Heumann. The book is organized as a dictionary, and has references from every aspect of the disability rights movement, from court cases to famous people, to historical events and disability culture. It also includes a chronology, beginning with the founding of the American School for the Deaf in 1817 and concluding in 1996.

TITLE: Teaching sociology of disabilities

AUTHORS: Schlesinger, L., & Taub, D. (Eds.).

PUBLICATION INFORMATION: 1998

American Sociological Association (ASA) Teaching Resources
1722 N Street, N.W.
Washington, DC 20036
http://www.asanet.org/

Teaching sociology of disabilities is a collection of syllabi and instructional materials on disability issues. It can be purchased by ASA members for $17.00 and by non-ASA members for $21.00. A copy can be downloaded from the ASA web site at no charge.

Amazon.com

This is a list of books we found on the web site Amazon.com, which is probably the most well known on-line bookstore. Their address is http://www.amazon.com/. We found these books either under the heading “Disability Studies” or “Sociology of Disability,” and have listed books that have recently been published or are to be published within the next year. We have not read these books, and therefore cannot attest to the content. We are basing this list only on titles.

Disability Studies: A Reader
Stuart Carruthers, Jim Sandu/Paperback/To be published in 1999

The Disability Reader: Social Science Perspective
Tom Shakespeare (Editor)/Hardcover and Softcover/To be published in June 1998

Sexuality and People with Intellectual Disability Lydia Fegan, et al/Hardcover/Published 1997

Gender and Disability: Women’s Experiences in the Middle East
Lina Abu-Habib/Paperback/Published 1997

Struggles for Inclusive Education: An Ethnographic Study (Disability, Human Rights and Society)
Anastasia D. Vlachou/Paperback/Published 1997

Disability and Society: Emerging Issues and Insights (Longman Sociology Series)
Len Barton (Editor)/Paperback/Published 1996.

Beyond Disability: Towards an Enabling Society (Open University Set Book)
Gerald Hales (Editor)/Hardcover/Published 1996

The Sexual Politics of Disability: Untold Desires
Tom Shakespeare, et al/Hardcover/Published 1996

In Search of Freedom: How Persons with Disabilities Have Been Disenfranchised from the Mainstream of American Society
Willie V. Bryan/Paperback/Published 1996

Understanding Disability: From Theory to Practice
Michael Oliver/Paperback/Published 1996

Bad-Mouth ing: The Language of Special Needs
Jenny Corbett/Hardcover/Paperback/Published 1995

Disabling Laws, Enabling Acts: Disability Rights in Britain and America (Law and Social Theory)
Caroline Gooding/Hardcover/Published 1995

Enforcing Normalcy: Disability, Deafness, and the Body
Lennard J. Davis/Paperback/Published 1995

The Eye of the Beholder: Deformity and Disability in the Graeco-Roman World
Robert Garland/Hardcover/Published 1995

Feminist Disability Studies

The books and articles selected for this section represent a recently recognized branch of disability studies: feminist disability studies. This field may have begun with British women such as Jenny Corbett and Jenny Morris, who take a feminist stance that the personal is political, and explore their lives as women with disabilities through this political lens. More recently, feminist scholarship in the United States has begun to explore disability studies within feminism. Scholars such as Rosemarie Garland Thomson call for feminist to recognize disability as a category of otherness, such as race, class, gender, and sexual orientation, and to locate feminist disability studies in the broader area of identity politics.

The selections here represent just some of the voices and perspectives in this relatively new and rapidly growing field. Many of these are also included in the information package, Women with Disabilities: Issues, Resources, Connections, Revised.

TITLE: Redrawing the boundaries of feminist disability studies

AUTHOR: Garland Thomson, R.

PUBLICATION INFORMATION: 1994

Feminist Disability Studies, 20(3), 583-597.

In this review essay, Rosemarie Garland Thomson argues for the recognition of feminist disability studies within feminism. She states that feminist critical analysis does not usually recognize disability as a category of otherness (as it does with race, class, and gender) unless the study specifically states this focus. Although helpful, she would like to see a shift away from women’s autobiographical accounts of their own experiences with disability, which often promote the “disaster/terror/pity scenario of disability”, to an articulation of feminist disability studies as a “major critical subgenre within feminism.” She asserts that feminist disability studies can be located in the broader area of identity politics if discourses of the body marked as deviant are included. To illustrate her argument, Thomson draws on four feminist works. The first three, Invalid women: Figuring feminine illness In American fiction and culture, 1840-1940 by Diane Price Herndl, Monstrous imagination by Marie-Helene Huet, and Tattoo, torture, mutilation, and adornment: The denaturalization of the body in cultural text edited by Frances E. Mascia-Lees and Patricia Sharpe, do not deal with “disability” specifically, instead, Thomson interprets these works in a feminist disability studies perspective. She uses the fourth book, Barbara Hillyer’s Feminism and disability because it specifically addresses the issue of disability and feminism, and because it embodies the feminist principle that the personal is political. Thomson hopes that these four books introduce perspective into the emerging field of feminist disability studies.

TITLE: Feminism and disability

AUTHOR: Hillyer, B.

PUBLICATION INFORMATION: 1993

University of Oklahoma Press
1005 Asp Avenue
Norman, OK 73019-0445
http://www.ou.edu/oupress/

Written out of a need in the feminist movement to include women with disabilities and a need in the disability rights movement to address the unique experiences of women, Feminism and disability combines the personal, political, and intellectual aspects of feminist theory and disability theory. Hillyer discusses such issues as body awareness, community, nature and technology, and the ways in which cultural standards of language, independence, and even mother-blaming are constructed. She also challenges political movements which stress productivity and normalization in order to include more types of people and more aspects of the human condition.

TITLE: What happened to you? Writings by disabled women

AUTHOR: Keith, L. (Ed.).

PUBLICATION INFORMATION: 1996

The New Press
450 West 41 Street
New York, NY 10036
http://www.wwnorton.com/newpress/welcome.htm

Lois Keith compiled collections of fiction, essays, and poetry by disabled women in her new book, What happened to you? Her goal is to give women with disabilities a space to express their views on such topics as abuse, equality, sexuality, prejudice, and legislation dealing with disability issues. These narratives construct disability as a cultural and political issue, not only as a personal one.

TITLE: Mustn’t grumble: Writings by disabled women

AUTHOR: Keith, L. (Ed.).

PUBLICATION INFORMATION: 1994

The Women’s Press
34 Great Sutton Street
London EC1 V0DX
ENGLAND
mailto:jas@interbooks.com
http://www.the-womens-press.com/

This edited book, compiled by a woman with a disability, presents writings by other women who have a range of physical disabilities. The short stories and poems included in this book range in topic from issues of accessibility to abuse to equality. Disability is framed by these narratives as a social, cultural, and political issue, not only as a personal one. This is an excellent account of disability issues from a woman’s perspective. It is powerful, moving, and educating for all readers.

TITLE: Does she boil eggs? Towards a feminist model of disability

AUTHOR: Lloyd, M.

PUBLICATION INFORMATION: 1992

Disability, Handicap & Society, 7(3), 207-221.

The author examines disability from the perspective of women with disabilities. She focuses on the social model of disability rather than a medical model and asserts that disability is another form of oppression experienced by women. She argues that disabled women have been excluded from both the women’s movement, which is oriented toward non-disabled women, and from the disability rights movement, which is oriented toward disabled men. Using the history of black feminism, the author argues for a reframing of the analysis in which to explore the simultaneous experiences of gender and disability.

TITLE: Women and disability

AUTHOR: Lonsdale, S.

PUBLICATION INFORMATION: 1990

St. Martin’s Press
175 Fifth Avenue
New York, NY 10010
http://www.stmartins.com/

Lonsdale explores how women with physical disabilities experience the double discrimination of being both a woman and a person with a disability in society. Placing physical disability in a social and political context rather than an individual one, she uncovers how women with disabilities have been rendered invisible, how they see their self image and body image, how physical disability often leads to dependence, and how women experience a loss of civil liberties and how they face discrimination. Lonsdale also considers the ways in which these situations can change for women, specifically, how policy practices can change so women can achieve greater independence. Chapters include subjects such as the social context of disability, invisible women, self-image and sexuality, employment, financial consequences of disability, discrimination, and independence.

TITLE: Feminism and disability

AUTHOR: Morris, J.

PUBLICATION INFORMATION: 1993

Feminist Review, 43, 57-70.

The author discusses the absence of women with disabilities from feminist scholarship and feminist theory. Morris claims that a significant failure of feminism is that it fails to incorporate disabled women into its politics, theory, research, and methodology. She argues that feminist theory would benefit from the inclusion of the concerns and experiences of disabled women, and that feminist theory and feminist methodology have major contributions to make to the disability research. The author discusses her anger and frustration with feminism in two ways: first, that disability is generally invisible from feminism’s mainstream agenda, and second, that when disability is a subject of research by feminists, the researchers objectify disabled people so that the research is alienated from their experiences rather than attempting to understand the experiences of disabled women.

TITLE: Personal and political: A feminist perspective on researching physical disability

AUTHOR: Morris, J.

PUBLICATION INFORMATION: 1992

Disability, Handicap & Society, 7(2), 157-166.

Morris asserts that feminist theory and methodology have largely ignored and alienated women with disabilities and the research conducted by disabled people. She argues the feminist theory needs to take up the challenge of applying their principles to the study of disability and to examine the lives of disabled women. In turn, Morris feels that disabled women and disability research in general has much to learn from feminist methodology; mainly the principle of making the personal political. In addition, Morris outlines the role she sees for nondisabled researchers interested in researching disability-related issues. She views the role of the non disabled researcher as an ally, and calls on non disabled as well as disabled researchers to continue to study the ways in which the non disabled society oppresses its members with disabilities. Lastly, she argues that disability research is of great importance in the general understanding of the perpetuation of inequalities in society.

TITLE: Pride against prejudice

AUTHOR: Morris, J.

PUBLICATION INFORMATION: 1991

New Society Publishers
P.O. Box 189
1680 Peterson Rd
. Gabriola Island, BC V0R 1X0
CANADA
mailto:nsp@island.net
http://www.newsociety.com/

Morris, a disabled feminist and activist, provides a feminist analysis to the study of the experiences of women with disabilities. Basing her arguments on the feminist principle that the personal is political, Morris eloquently challenges such issues as prejudice, abortion, and the notion that people with disabilities lead lives that are not worth living. She further discusses the history of people with disabilities in institutions and under the Nazi regime. Morris also examines the meaning of disability in Western culture and the meanings of history of segregation, dependence, and an emerging independence of people with disabilities. Pride against prejudice is a commentary on political activism and rights, and stresses the need to fight back against the prejudice, stereotypes, and oppression of an abelist culture.

TITLE: The lives of women with mental retardation: A multiple minority perspective

AUTHOR: Olson, D. L.

PUBLICATION INFORMATION: 1991

Unpublished doctoral dissertation
Syracuse University
Syracuse, NY 13244

This dissertation by Deborah Olson explores the lives of women labeled mentally retarded. She argues that this label, along with their gender, has placed these women in the disadvantageous position of being in a multiple minority group. Through in-depth interviews with five women labeled mentally retarded, Olson seeks to understand how they see themselves as women with mental retardation and how they interact with people who have impact on their lives. The major finding from this work is that women with a label of mental retardation are more prepared to handle disability discrimination than gender discrimination, and that the women’s movement has not provided them with the awareness of choices it has provided for other women who do not have cognitive disabilities.

TITLE: Toward a feminist theory of disability

AUTHOR: Wendell, S.

PUBLICATION INFORMATION: 1997

In L. J. Davis (Ed.)., The disability studies reader (pp. 260-278). New York: Routledge.

Routledge
29 West 35th Street
New York, NY 10001
212-216-7800
FAX 212-564-7854
http://www.thomson.com/routledge

The author argues that disability is not a “biological given,” rather it is a social construction of biological reality (like gender) and because of this, the fact that 16% of women have disabilities, and that feminist thinkers have raised the most radical issues concerning cultural attitudes to the body, a feminist theory of disability is needed. Wendell argues that those with disabilities are constructed as “the other” and because of this are seen as failing to control their bodies (control of our bodies is demanded by society) and as symbolizing the threat of pain, limitation, dependency, and death. She calls for people with disabilities and their knowledge and experience with their bodies to be fully integrated into society, and concludes that in this way bodies would be liberated.

TITLE: The rejected body: Feminist philosophical reflections on disability

AUTHOR: Wendell, S.

PUBLICATION INFORMATION: 1996

Routledge
29 West 35th Street
New York, NY 10001
212-216-7800
FAX 212-564-7854
http://www.thomson.com/routledge

In The rejected body, Susan Wendell, a woman with Chronic Fatigue Syndrome, draws parallels between her own experiences with illness to feminist theory and disability studies. She argues (as many others have), that feminist theory has neglected to incorporate the perspectives and experiences of women with disabilities, and that these perspectives must be included in future discussions of feminist ethics, the body, and the social critique of the medical model. Wendell also examines how cultural attitudes about the body contribute to disability oppression and society’s unwillingness to accept different types of bodies.

Autobiographies/Personal Narratives

This section highlights some of the current autobiographies and personal narratives of people with disabilities. This is just a sampling, since the previous annotated bibliographies in this packet have presented a much more detailed list.

TITLE: Life as we know it: A father, family, and an exceptional child

AUTHOR: Bérubé, M.

PUBLICATION INFORMATION: 1996

Vintage Books
Random House, Inc.
Customer Service, Dept. #05001
Random House Distribution Center
400 Hahn Road
Westminster, MD 21157
mailto:customerservice@randomhouse.com
http://www.randomhouse.com/

This remarkable book is a father’s story of the life of his 4-year-old son James, who has Down syndrome. It is far more than just a personal memoir of his son’s birth and young life. In following the developmental stages, social experiences, and involvement with social services that James passes through, Bérubé explores their social implications, including such topics as IQ testing, the politics of education, disability law, social services, health care, and entitlements. Implicit in these discussions are not just his own family’s experiences in these realms, but also concepts such as social justice, what it means to be human, and what kind of society is valued and by what means we determine this value.

TITLE: Body, remember

AUTHOR: Fries, K.

PUBLICATION INFORMATION: 1997

Plume
Penguin Putnam Inc.
375 Hudson Street
New York, NY 10014
http://www.penguin.com/

In this memoir, Kenny Fries explores his life and experiences with his disability. Having been born with congenital deformities that affected the lower part of his body, Fries searches medical records, talks with family and friends, and examines past relationships in order to better understand his disability. In addition to an understanding of his physical body, Fires also explores his sexuality and personal relationships. This is a memoir about disability, but it is also about the discovery and understanding of his identity.

TITLE: Thinking in pictures: And other reports from my life

AUTHOR: Grandin, T.

PUBLICATION INFORMATION: 1995

Bantam Doubleday Dell Publishers Groups, Inc.
1540 Broadway
New York, NY 10036
mailto:webmaster@bdd.com
http://www.bdd.com/

Thinking in pictures is about the childhood and development of Temple Grandin, a woman with autism. She likens herself to the robotic character, Data, on the science fiction television program, Star Trek: The Next Generation. She says words are like a second language to her, noting that she thinks primarily in images. Grandin, who holds a Ph.D. in animal science and has designed equipment that revolutionized the livestock industry, proposes that genius and autism may sometimes be closely related.

TITLE: Moving violations: War zones, wheelchairs, and declarations of independence

AUTHOR: Hockenberry, J.

PUBLICATION INFORMATION: 1995

Hyperion
114 Fifth Avenue
New York, NY 10011

Moving violations is an honest and often humorous account of Hockenberry’s life as a man with a disability. He takes the reader on a journey in which he reflects upon the events in his life, from the accident that, at age 19, caused a spinal cord injury to his work as a nationally renown broadcast journalist. He does not flinch at talking about the personal aspects of disability. And he shares the adventures of his career, such as riding a mule up a mountainside with Kurdish refugees who were being driven from their land by the Iraqis after Desert Storm. Hockenberry also explains how his disability, rather than limiting him, is a window through which he frames his view of the world—how it expands his gaze and gives him insight that defines who he is and what he does.

TITLE: Bus girl: Poems by Gretchen Josephson

AUTHORS: Lubchenco, L. O., & Crocker, A. C.

PUBLICATION INFORMATION: 1997

Brookline Books
P.O. Box 1047
Cambridge, MA 02238
mailto:BROOKLINEBKS@delphi.com
http://people.delphi.com/brooklinebks/index.html

This book consists of 25 poems written by Gretchen Josephson, a woman with Down syndrome. She started writing poetry while still in her teens, when she began a job as a bus girl at a restaurant. Her poetry chronicles her life experiences with family, friends, love, and other areas of life. The editors have divided her poetry into sections, which include Bus Girl, Love for Always, Vacations and Travel, Family, Death and Greed, Faith, and Other Poems. Unlike other artistic works such as Musn’t grumble edited by Lois Keith, Josephson does not write about disability. Instead, she simply creates poetry about her life.

TITLE: Waist-high in the world: A life among the disabled

AUTHOR: Mairs, N.

PUBLICATION INFORMATION: 1997

Beacon Press
25 Beacon Street
Boston, MA 02108
617-742-2100
mailto:lpemstein@beacon.org
http://www.uaa.org/Beacon/

Nancy Mairs, a brilliant essayist and poet who has authored six previous books, reflects upon her experiences as a woman with multiple sclerosis in Waist-high in the world. She discusses such topics as adjusting to change, reconciling body image, experiencing sexuality and pleasure, and seeking equality and justice. She also probes other disability issues, such as assisted suicide and selective abortion, and she revisits an article she once wrote for Glamour magazine that focused on young people with disabilities.

TITLE: The me in the mirror

AUTHOR: Panzarino, C

PUBLICATION INFORMATION: 1994

Seal Press
3131 Western Ave., Suite 410
Seattle, WA 98121-1041
mailto:sealprss@scn.org
http://www.sealpress.com/

Written by writer, disability activist, and artist Connie Panzarino, The me in the mirror is an autobiography of the life of this amazing woman. Born with Spinal Muscular Atrophy Type III, a rare disease, Panzarino describes her life as one of struggles and triumphs, and tells the stories of her relationships with her family, friends, lovers, her turn to lesbianism, and of her years of pioneering work in the disability rights movement. This book is a must read for anyone interested in understanding the experiences of women with physical disabilities.

TITLE: Nobody, nowhere: The extraordinary autobiography of an autistic

AUTHOR: Williams, D.

PUBLICATION INFORMATION: 1992

Avon Books
1350 Avenue of the Americas
New York, NY 10019
http://www.avonbooks.com/avon/about.html

Donna Williams, who was diagnosed with autism when in her mid 20s, wrote Nobody, nowhere in an attempt to understand herself and to explore how she fit into the world around her. She candidly describes the teasing and mistreatment she experienced at the hands of her family and her ability to use role-playing to interact with others. Williams said of her book, “This is a story of two battles, a battle to keep out ‘the world’ and a battle to join it. I have, throughout my private war, been a she, a you, a Donna, and finally, an I.”

TITLE: Somebody somewhere: Breaking free from the world of autism

AUTHOR: Williams, D.

PUBLICATION INFORMATION: 1994

Times Books
Random House Trade Group
New York, NY
http://www.randomhouse.com/trade/

This autobiography by Donna Williams poignantly and defiantly illustrates her life and struggle with autism. She powerfully articulates her “awakening to the world” and how she fought for others to do the same. She presents her perspective of autism and reminds the readers that it is crucial that they seek to understand her perspective and the perspectives of others with autism rather that imposing their own notions onto someone else. She asserts that she has taken control of her autism, that it does not control her.

TITLE: Like colors to the blind

AUTHOR: Williams, D.

PUBLICATION INFORMATION: 1996

Times Books
Random House Trade Group
New York, NY
http://www.randomhouse.com/trade/

Like colors to the blind is Donna Williams’ third book about her life as a person with autism. When she was diagnosed with autism at the age of 25, she wrote Nobody, nowhere as an attempt to explore her experiences as a person with autistic symptoms. In her sequel, Somebody, somewhere, she continued to analyze how role playing and ritualistic behavior helped her to cope with her environment, and how she was able to begin to replace these mechanisms with genuine interactions. This, her latest work, builds upon the last, addressing relationships and emotions. Williams describes her relationship with Ian, who became her best friend and eventually her husband.

TITLE: Women with disabilities: Found voices

AUTHORS: Willmuth, M., & Holcomb, L.

PUBLICATION INFORMATION: 1994

The Haworth Press, Inc.
10 Alice Street
Binghamton, NY 13904-1580
mailto:getinfo@haworthpressinc.com
http://www.haworthpressinc.com/

Written almost entirely by woman with disabilities, Women with disabilities: Found voices is a deeply personal and compelling discourse of the body, violence, sexuality, and disability. The authors offer a multicultural perspective which speaks frankly about their experiences. They discuss the abuses they have endured and explain how they have struggled with the issue of being a woman with a body that does not conform to the image that society values.

Movies and Documentaries

This section offers just a few of the many movies and documentaries which are related to the field of disability studies. We have highlighted a select few that reflect a variety of perspectives, and have listed many more (the more mainstream films). For descriptions of these films, we recommend the web site of the Office of Special Education at the University of Virginia, Individuals with Special Needs in Films. Their web address is:

http://curry.edschool.virginia.edu/go/cise/ose/information/film

Another web site to refer to is “Films Involving Disabilities.” The web address is:

http://www.disabilityfilms.co.uk/

You may also want to check under a more general directory. For that, we recommend the Internet Movie Database. Its address is:

http://us.imdb.com/

While we certainly would recommend many of these titles, we are not certain of the availability of all of them.

TITLE: Breathing lessons

DIRECTOR: Jessica Yu

PRODUCER: Inscrutable Films

DATE: 1996

35 minutes

The award-winning documentary, Breathing lessons, addresses what life as a person with a disability is like from the perspective of Mark O’Brien. O’Brien, who is a poet and journalist, is paralyzed and uses an iron lung. Through his poetry and his insightful commentary, he reflects on such issues as the meaning of life, death, sex, relationships, creativity, and religion.

TITLE: Brother’s keeper

DIRECTORS: Joe Berlinger and Bruce Sinofski

PRODUCER: American Playhouse Theatrical Films

DATE: 1992

120 minutes

The lives of the Ward brothers, farmers in a rural community in upstate New York, are disrupted when the oldest brother, Bill, dies and his brother, Delbert, is accused of his murder. Brother’s keeper focuses on the outpouring of support Delbert received from the community. To the townspeople, the Ward boys, as they were affectionately called–Bill, Delbert, Lyman, and Roscoe–were quiet men who lived in a run-down shack and farmed the land on which they grew up. The film chronicles the events surrounding Bill’s death and Delbert’s trial, including the townspeople’s efforts to raise funds for Delbert’s defense, their support of his innocence, and their refusal to see the Ward brothers through the lens of mental retardation.

TITLE: Self Advocates Becoming Empowered

PRODUCER: Act Video Products

DATE: 1997

20 minutes

Self Advocates Becoming Empowered is about people with cognitive disabilities forming a national organization to work on issues they deem important, such as closing institutions, exercising their rights as citizens, supporting people to live in communities, and opposing injustice in the criminal justice system. Likening their movement to the civil rights movement of the 60s, many of the advocates speak out about the importance of their mission to people with disabilities.

TITLE: Selling murder: The killing films of the Third Reich

DIRECTOR: Joanna Mack

WRITER AND RESEARCHER: Michael Burleigh

PRODUCER: Domino Films

DATE: 1991

This is a chilling Nazi propaganda film about the genocide of people with disabilities during the Second World War. Under what the Third Reich termed the “hereditary health law,” they convinced doctors that killing people with mental or physical disabilities was for their own good, and the good of the Aryan nation at large. The original film makers used shadows and poor lighting to make people seem grotesque, and played on the medical model of disability in terms of what is “abnormal” and “normal,” and even “human” and “not human.” This is a powerful film that should generate interesting discussions if used in a disability studies class.

Please note: This film was aired on the Discovery Channel a few years ago, and we are not sure of its availability, but it is definitely worth a good search.

TITLE: Titicut follies

DIRECTOR: Frederick Wiseman

PRODUCER: Zipporah Films

DATE: 1967

83 minutes

Although more than 30 years old, Titicut follies remains a classic, depicting institutional life in a mental health facility. The 1967 Wiseman film is named for and centers around a talent show, the Titticut Follies, held for the inmates of the Bridgewater State Mental Hospital, in Massachusetts. While scenes from the talent show are disbursed throughout the film, the stark reality of daily life in the institution is revealed. There is little regard for the inmates’ human dignity; not only is what they have to say dismissed, but they are subjected to strip searches, lack of privacy, ridicule, and isolation. Titicut follies is a grim film that reflects the barren existence of life in a mental hospital.

TITLE: Vital signs: Crip culture talks back

DIRECTORS: David Mitchell and Sharon Snyder

PRODUCER: Studio Pulse Communication, Green Bay, WI

DATE: 1997

48 minutes

In the documentary Vital signs: Crip culture talks back, participants in a national Disability and the Arts conference explore the politics of disability through their performances, which include such texts as art, fiction, poetry, stand-up comedy, drama, and personal stories. It features such disability rights activists as Cheryl Marie Wade, Mary Duffy, and Harlan Hahn, and also includes group debates and behind-the-scenes conversations. The film also addresses the culture of disability and the shared struggle people with disability have in gaining access to influential cultural institutions.

TITLE: When Billy broke his head… and other tales of wonder

DIRECTOR AND PRODUCER: Billy Golfus and David E. Simpson

WRITER AND NARRATOR: Billy Golfus

DATE: 1995

First premiering on PBS in 1995, this film by Billy Golfus explores the concept of disability rights and takes a close look at the disability rights movement and those involved. Golfus, who has a traumatic brain injury, intertwines his story with the experiences of others who are struggling for their rights. This is a must see.

TITLE: No apologies

PRODUCERS: Disabled Women’s Theatre

DATE: 1994

This 28-minute video is by Wry Crips Disabled Women’s Theatre, which is a comedy troupe of women who are at the forefront of the disability culture movement in the San Francisco Bay area. It is comprised of disabled and able-bodied women of diverse racial, social, and class background. Wry Crips uses humor as a form of resistance. Their performances, comprised of poetry, readings, signing, performing skits, and reading narratives, all resist medical paradigms, social stereotypes, economic oppression, or individualist assumptions regarding disability issues. The women of Wry Crips embrace disability, seeing beauty and acceptance where able-bodied people only see difference and abnormality.

LIST OF MORE MAINSTREAM FILMS

Awakenings
Benny and Joon
The Big Parade
Born on the Fourth of July
Charly
Children of a Lesser God
Coming Home
Dominick and Eugene
The Elephant Man
Forrest Gump
Freaks
Gattaca
Mask
The Miracle Worker
My Left Foot
One Flew Over the Cuckoos Nest
Orphans of the Storm
Passion Fish
Rain Man
Skallagrig
Sling Blade
The Waterdance
What’s Eating Gilbert Grape
Whose Life is it, Anyway?

Academic Programs

The following section offers a description of colleges and universities that offer classes, programs, or concentrations in Disability Studies. They range from academic institutions that offer classes representative of the Disability Studies perspective to institutions that offer advanced degrees in this field or related fields. For an overview of Disability Studies in general, please see “Disability Studies 101: From Werewolves to Hephaetus” by Joshua Harris Prager in The Wall Street Journal, August 31, 1998, and “Pioneering Field of Disability Studies Challenges Established Approaches and Attitudes,” by Peter Monaghan, in The Chronicle of Higher Education, January 23, 1998.

Academic Institution:
Syracuse University

Program Name:
Disability Studies Concentration

Address:
Cultural Foundations of Education
School of Education
805 South Crouse Avenue
Syracuse, NY 13244-2280

Contact:
Steven J. Taylor, Ph.D.
Coordinator, Disability Studies Concentration

Phone:
(315) 443-3851

E-Mail:
staylo01@mailbox.syr.edu

WWW:
http://soeweb.syr.edu/thechp/disstud.htm

Location on Campus:
Cultural Foundations of Education, School of Education

Program Description:
The Disability Studies concentration applies social, cultural, historical, and philosophical perspectives to the study of disability in society. Building on the tradition of Syracuse University’s School of Education in the area of disability, the concentration is designed to help students understand and work to overcome the barriers to full participation of people with disabilities in community and society.

Consistent with the Syracuse tradition, this concentration stands at the forefront of change and new ways of thinking about and accommodating people with disabilities. While it adopts a cross-disability perspective, it devotes special attention to people who have been labeled as developmentally disabled or mentally retarded.

Program Emphasis:
As a graduate student pursuing this concentration, you will have a program of study that matches your own interests with the current activities of faculty and associates. Through course work, independent studies, thesis or dissertation research, or internships at the School of Education’s disability centers and institutes, you will examine a range of issues confronting people with disabilities, including deinstitutionalization and community integration, current trends and controversies, advocacy and self- advocacy, the sociology of deviance and acceptance, community and family support services, media images of disability, gender and disability, and disability policy. In addition, you will be exposed to strategies for policy analysis, program evaluation, and community education. Depending on your interests and program of study, you will be encouraged to take courses both in the School of Education and other schools at Syracuse University, including the Maxwell School of Citizenship and Public Affairs, the Law School, and the School of Social Work.

Program Requirements:
Master of Science (M.S.)

  • A minimum of 24 credits beyond the bachelor’s degree and a thesis (3 or 6 credits) or a minimum of 30 credits beyond the bachelor’s degree and a comprehensive examination.
  • An internship (3 or 6 credits) at one of the School of Education’s disability centers or institutes or another organization approved by the student’s advisor.
  • A minimum of 3 credits of qualitative or quantitative research methodology.

Doctor of Philosophy (Ph.D.)

  • A minimum of 90 credits beyond the bachelor’s degree; one-half of the credits, excluding dissertation hours, may be transferred from another university with the advisor’s approval.
  • A minimum of 12 credits of research methodology.
  • A research apprenticeship (journal quality scholarly article) completed under the supervision of a faculty member.
  • Qualifying examinations.
  • An internship (6 to 12 credits) at one of the School of Education’s disability centers or institutes or another organization approved by the student’s advisor.
  • Dissertation (typically, doctoral students register for 12-24 dissertation credits during the course of their studies).

Academic Institution:
Suffolk University

Program Name:
Master’s of Public Administration/Disability Studies

Address:
Eight Ashburton Place
Boston, MA 02108-2770

Contact:
Professor Richard Beinecke

Phone:
(617) 573-8062

E-Mail:
ssominfo@acad.suffolk.edu

Location on Campus:
Department of Public Management of the Frank Sawyer School of Management

Program Description:
Students take three semester credit courses, and also have independent studies, an internship, and a comparative policy course in Dublin and/or Puerto Rico.

Program Emphasis:
Policy Analysis and Public Management

Program Requirements:
Nine required MPA courses plus five additional courses required by the disability studies concentration. Three additional classes are also required.

Courses offered:
Disability Rights, Disability Issues, Disability and Public Policy, The U.S. Health System, Changes in Disability Policy

Academic Institution:
University of Illinois at Chicago

Program Name:
Department of Disability and Human Development

Address:
Institute on Disability and Human Development
1640 West Roosevelt Road
Chicago, IL 60516

Contact:
William J. Schiller, Clinical Assistant Professor of Human Development

Phone:
(312) 413-1536

E-mail:
wjschill@uic.edu

WWW:
http://www.uic.edu/depts/idhd/idhdfull.html

Location on Campus:
College of Associated Health Professionals

Degree Programs:
Masters in Disability and Human Development
Masters in Rehabilitation Technology
Ph.D. program in Disability Studies jointly developed with the Department of Occupational Therapy and the Department of Physical Therapy.
Post-doctoral research fellowships in the following areas: aging and disability, assistive technology, dual diagnosis, and policy analysis.

Program Description:
This interdisciplinary program provides students with experience and education in the College of Associated Health Professions, the School of Public Health, and the Colleges of Education, Engineering, Social Work, and the Department of Psychology. The program provides field experience through clinical programs in assistive technology, diagnostics, and mental health for people with mental retardation. Field-based internships are also available.

Program Emphasis:
Master’s Program – emphasis in the newly proposed Department of Disability and Human Development, with specializations in Disability Studies, Rehabilitation Technology, and Disability Policy and Organization.

PhD Program: The program has an interdisciplinary approach to the study of disability, examining the social, political, biological, and cultural determinants of disability. The focus of student learning may include one of the following: a socio/cultural approach to disability, policy and practice, political and economic issues, vocational issues, family issues, and many more.

The DHD web site has extensive information, including program requirements and class listings for both the Master and Ph.D. programs. Please see the URL listed above for more information.

Academic Institution:
University of Maine, Orono

Program Name:
Interdisciplinary Disability Studies

Address:
115 Corbett Hall
Orono, ME 04469

Contact:
Elizabeth DePoy

Phone:
(207) 581-1469

E-Mail:
liz_depoy@voyager.umeres.maine.edu

WWW:
http://cardinal.umeais.maine.edu/~cci/ccihi.html

Location on Campus:
Center for Community Inclusion

Program Description:
This program prepares both undergraduate and graduate students to be leaders in the field of developmental and related disabilities. It is a University-Affiliated Program (UAP) which provides an interdisciplinary education in the field of disability. The program offers practica, coursework, assistantships, and internships in university and community settings throughout the state, and is affiliated with other universities in Maine.

The College of Education, in collaboration with the Center for Community Inclusion, offers a program that prepares students to aid people with disabilities in school-to-work transition. Many of these courses are interactive television courses, which allows people from all over Maine to enroll.

Program Emphasis:
Developmental Disabilities

Program Requirements:
Students can choose elective courses from departments such as Education, Communication Disorders, Human Development, Nursing, Psychology, Sociology, Public Administration, and Social Work.
Practica also are available and are developed individually to meet the needs of students.

Degree Program:
Personnel Preparation Program for Transition Specialists

Courses Offered:
Developmental Disabilities Across the Lifespan
Interdisciplinary Seminar in Developmental
Disabilities (Intro and Advanced)
Positive Approaches for Challenging Behavior

Academic Institution:
Medaille College

Program Name:
Disability Studies Certificate

Address:
18 Agassiz Circle
Buffalo, NY 14214

Phone:
(716) 884-3281

Fax:
(716) 292-1582

WWW:
http://www.medaille.edu/ds.html

Program Description:
Students may receive certificates in disability studies, approved by the State Education Department. A total of 33 credit hours are required.

Program Requirements:
Students must complete each course listed below and maintain a cumulative grade point average of at least 2.00. The last 12 credit hours must be completed at Medaille College and an application for the certificate must be filed in the Office of the Registar prior to registering for the last course.

Courses Offered:
HSV 100 – Introduction to Human Services Across the Life Span or
CYS 100 – Introduction to Child and Youth Services
CYS 280 – Understanding Multicultural and Diverse Populations
HSV 120 – The Dynamics of Interviewing
HSV 210 – Introduction to Disabilities
HSV 211 – Introduction to Disability Law
HSV 285 – Workshop in Major Disabilities
HSV 301 – Program Planning and Administration
HSV 377 – Field Experience II
CYS 377 – Field Experience I (6 credits)
SSC 200 – Human Relations
WRT 175 – College Writing II

Academic Institution:
Hunter College of the City University of New York

Address:
695 Park Avenue
New York, NY 10021

Phone:
(212) 772-5745

Contact:
Phyllis Rubenfeld or Simi Linton

E-Mail:
phyllis.rubenfeld@hunter.cuny.edu

Location on Campus:
Disabilities Studies Project

Program Description:
An undergraduate program in disability studies has been proposed for the 1998-1999 academic year. No further information is available.

Academic Institution:
The University of Leeds

Program Name:
MA/Diploma in Disability Studies and MA/Diploma in Disability Studies by Distance Learning

Address:
Leeds, LS2 9JT
UNITED KINGDOM

Phone:
0113 233 4408

Fax:
0113 233 4415

WWW:
http://www.leeds.ac.uk/sociology/pgbroch.disabil.htm

Contact:
Colin Barnes, Director and Debbie Westmoreland, Postgraduate Secretary

Location on Campus:
Department of Sociology and Social Policy

Program Description:
This advanced scheme of study is designed for people working or planning a career in the field of disability, and is especially suitable for service providers, practitioners and policy makers including: educational psychologists, educationalists in further and higher education, physiotherapists, occupational therapists, social workers, community nurses, doctors, architects, town planners etc. These courses can easily be fitted in with a busy working life. Students are required to attend the University only one afternoon or one evening a week over one or two years, depending on the option chosen.

This unique and popular program of study provides students with an in-depth perspective on a wide range of disability related issues. It is offered on a modular basis, and each module is designed to give fresh insights into the concepts associated with disablement in modern society and will provide a basic grounding in the principles and theories upon which practice is based.

Program Emphasis:
Disability as an equal opportunities issue will be explored through the study of contemporary organizations and institutionalized practices. The course is designed to enable students to bridge the gap between theory and practice.

For the Diploma in Disability Studies students are required to study four modules as follows:

Module 1: Theories and definitions of disability
Module 2: Social policy, politics and disabled people
Module 3: Culture, researching disability and changing practice
Module 4: Disability project

For the MA in Disability Studies students are required to study modules 1, 2, and 3 as for the Diploma in Disability Studies and two further modules described in more detail at the WWW site at the address listed above. Information on the MA/Diploma in Disability Studies by Distance Learning can be viewed at http://www.leeds.ac.uk/sociology/pgbroch.disabdl.htm

Academic Institution:
University of Hawai’i at Manoa

Program Name:
Pacific Partnerships in Disability and Diversity Studies

Address:
Center on Disability Studies
University of Hawai`i at Manoa
1776 University Ave UA 4-6
Honolulu, HI 96815

Contact Person:
David Pfeiffer, Ph.D.

Phone:
(808) 956-9202

Fax:
(808) 956-3162

E-Mail:
pfeiffer@hawaii.edu

Program Description:
Beginning September 1998, the primary disability studies program at the University is the Pacific Partnerships in Disability and Diversity Studies, which prepares students to be leaders and researchers in areas pertaining to children and youth with disabilities. The program has a dual focus designed to increase leadership personnel to implement program improvement, and to infuse cultural competence in services for children and youth with disabilities.

The program is an interdisciplinary approach, includes core seminars, research, and internship experiences.

Key components of leadership development in disability studies and cultural diversity is faculty and student mentorship. Peer mentorship also will be fostered by linking “partner” doctoral students, based on professional and personal interests in Pacific cultures.

Other programs include Maternal and Child Health Leadership Education in Neurodevelopmental and Related Disability Programs, as well as more than 20 others relating to community outreach in the Pacific Rim, Hawaiian children with mental health problems, assistive technology, and other areas.

Journals and Magazines

TITLE:
Disability & Society

ADDRESSES:
Subscriptions:
875-81 Massachusetts Avenue
Cambridge, MA 02139

Submissions:
Professor Len Barton
Disability & Society
Division of Education
University of Sheffield
388 Glossop Road
Sheffield S10 2JA
UNITED KINGDOM

PHONE:
1-800-354-1420

WWW:
http://www.carfax.co.uk/dso-ad.htm

SUBSCRIPTION RATES (annually):
Institutional: $416
Individual: $118

FREQUENCY:
Published 5 times a year (February, April, June, September, and November)

AVAILABILITY:
Journal and on-line (with paid subscription)

Disability & Society is an international journal providing a focus for debate about such issues as human rights, discrimination, definitions, policy and practices. It appears against a background of change in the ways in which disability is viewed and managed.

Definitions of disability are more readily acknowledged to be relative; custodial approaches are seen as inadequate and unacceptable–placing greater emphasis on community care and integration. However, policy intentions may not have the desired effects on the realities of everyday practice and policy changes themselves may be merely cosmetic, or appropriate but unfunded.

While publishing articles that represent all the professional perspectives, the journal also provides an opportunity for the consumers of the services to speak for themselves.

TITLE:
Disability Studies Quarterly

ADDRESSES:
Subscriptions:
David Pfeiffer
Center on Disability Studies
University of Hawai’i at Manoa
1776 University Avenue, UA-4-6
Honolulu, HI 96822

Submissions:
Every article published in the Quarterly is invited and reviewed by the editor or special editor. A call for manuscripts on specific topics is usually announced in each issue. Contributions or suggestions can be sent to David Pfeiffer at the address above.

SUBSCRIPTION RATES (annually):
Institutional $45
Individual $35
SDS member $30
Student $20
Low-income Whatever is affordable
(FYI: Subscription is not included in membership)

FREQUENCY:
Published 4 times a year by the Society for Disability Studies.

AVAILABILITY:
Journal, diskette, or via e-mail.

The Disability Studies Quarterly is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities, disability rights advocates, and others concerned with the problems of people with disabilities. The purpose of the Quarterly is to provide a place where people from diverse backgrounds can share ideas and to engage in dialogues that cut across disciplinary backgrounds and substantive concerns. The Quarterly is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society.

TITLE:
Journal The Association Of Persons With Severe Handicaps (JASH)

ADDRESSES:
Subscriptions:
29 W. Susquehanna Avenue
Suite 210
Baltimore, MD 21204
(410) 828-8274
FAX (410) 828-6706

Submissions:
Lori Goetz, Editor
JASH Editorial Offices
Department of Special Education & Communicative Disorders
San Francisco University
1600 Holloway Avenue
San Francisco, CA 94132
(415) 338-1306

SUBSCRIPTION RATES (annually):
Agency or library $190
General $ 85
Student or parent $ 45
(FYI – Membership in TASH includes the journal; see membership information under “ORGANIZATIONS”)

FREQUENCY:
Published quarterly

The Journal of The Association for Persons with Severe Handicaps (JASH) is a quarterly journal published by TASH (formerly The Association for Persons with Severe Handicaps), that emphasizes articles that report original research, authoritative and comprehensive reviews, conceptual and practical positions papers that offer new directions, and effective assessment and intervention methodologies and service delivery model program descriptions.

TITLE:
Journal of Disability Policy Studies

ADDRESSES:
Subscriptions:
Department of Rehabilitation, Education, and Research
University of Arkansas
346 N. West Avenue
Fayette, AR 72701

Submissions:
Kay Fletcher Schriner, Ph.D., Editor
Department of Rehabilitation, Education, and Research
University of Arkansas
346 N. West Avenue
Fayette, AR 72701

PHONE:
(501) 575-3656

FAX:
(501) 575-3253

SUBSCRIPTION RATES (annually):

Individual and institutional $24
Additional $5.00 charge for international subscriptions

FREQUENCY:
Published quarterly

AVAILABILITY:
Journal, tape, or diskette

The Journal of Disability Policy Studies addresses a broad range of topics on disability policy from the perspectives of a variety of academic disciplines and publishes articles pertaining to both macro-policy issues (such as the social constructions which direct and constrain policymakers) and micro-policy issues (such as legislative remedies and regulatory matters).

TITLE:
Mental Retardation

ADDRESSES:
Subscriptions:
AAMR
444 North Capitol Street, NW
Suite 846
Washington, DC 20001-1512
(202) 387-1968 or 1-800-424-3688
FAX (202) 387-2193

Submissions:
Steven J. Taylor, Ph.D., Editor
Center on Human Policy
School of Education, Syracuse University
805 S. Crouse Avenue
Syracuse, NY 13244-2280
(315) 443-3851
FAX (315) 443-4338
TTY: (315) 443-4355

SUBSCRIPTION RATES:
1 year $ 95
2 years $170
3 years $255
Single issue $ 30
Additions:
For Canada $ 6
Overseas $ 15

FREQUENCY:
Bi-monthly

Mental Retardation (MR) is a journal of policy, practices, and perspectives in the field of mental retardation. As a journal with an applied focus, MR publishes essays, qualitative and quantitative research articles, conceptual papers, comprehensive reviews, case studies, policy analyses, and innovative practice descriptions and evaluations. The style, methodology, or focus of an article is less important than its quality and contribution to our knowledge.

TITLE:
Mouth

Address:
P.O. Box 558
Topeka, KS 66601-0558

FAX:
(785) 233-1238

SUBSCRIPTION RATES (annually):
Organization/school/hospital: $48
Personal subscription + 1 “hardship” subscription: $32
Person with a disability or family member: $16
“Hardship” subscription $ 2
“Recovering Professional” (personal plus 2 hardship subscriptions) $48
Outside US add $7.00 USD

FREQUENCY:
Published 6 times a year

AVAILABILITY:
Magazine, large print, round-trip audiocassette.

This thought-provoking magazine features investigative journalism, news, and interviews with disability rights activists, reserving some of its harshest criticism for the “helping professions.” Mouth also publishes poetry and essays written by people with disabilities, and does not include commercial advertisements.

TITLE:
The Ragged Edge (formerly The Disability Rag)

Address:
The Advocado Press
P.O. Box 145
Louisville, KY 40201

SUBSCRIPTION RATES (Annually):
Organization $35.00
Individual $17.50
International $42.00

FREQUENCY:
Published 6 times a year

AVAILABILITY:
Magazine, on-line at: http://www.ragged-edge-mag.com/index.shtml#edge

Ragged Edge is successor to the award-winning periodical, The Disability Rag. In Ragged Edge, and on their web site, you’ll find the best in today’s writing about society’s “ragged edge” issues: medical rationing, genetic discrimination, assisted suicide, long-term care, attendant services. They cover the disability experience in America–what it means to be a crip living at the end of the 20th century.

ORGANIZATIONS

Association on Higher Education and Disability (AHEAD)
P.O. Box 21192
Columbus, OH 43221-0192
mailto:ahead@postbox.acs.ohio-state.edu
http://www.ahead.org/index.htm

AHEAD is an international organization of professionals committed to the full participation of individuals with disabilities in higher education. The Association provides programs, workshops, publications, and conferences that promote “excellence through education, communication and training.”

MEMBERSHIP FEES:
Institutional $250
Active professional $100
Additional professional $ 65 (addendum to institutional membership with voting rights)
Paraprofessional (Student) $ 50

Center for Disability Studies
Hawai’i University Affiliated Program
University of Hawai’i at Manoa
1776 University Avenue, UA-4-6
Honolulu, HI 96822
(808) 956-4454
http://www2.hawaii.edu/~huap/

The Hawaii University Affiliated Program (UAP) was established in 1988 as part of a network of more than 60 UAPs in the United States. UAPs were first developed in the 1960s in response to the Developmental Disabilities Act to provide training, research, and services for improved quality of life for persons with disabilities. The Center for Disabilities Studies activities extend throughout the state and region with more than 25 funded projects in five initiative areas: Mental Health, Special Health Needs, Pacific Outreach, Transition/Supported Employment , and School and Community Inclusion. The Center also serves as the editorial office of the Disability Studies Quarterly.

Center for Health Policy Research
The Center the Study and Advancement of Disability Policy
George Washington University
2175 K Street, N.W., Suite 700
Washington, DC 20037
(202) 496-8452 V/TTY
FAX: (202) 467-2251
mailto:ihorxs@gwumc.edu
http://www.gwumc.edu/chpr/

The Center for Health Policy Research conducts research and analysis of public policy issues that affect persons with disabilities and their families. It also provides public education, leadership development and training, technical assistance and information dissemination to disability groups and others interested in learning about issues pertaining to people with disabilities. The focus of the Center is on projects that foster the inclusion, integration, and empowerment of individuals with disabilities and their families.

Disability Research Unit
Department of Sociology and Social Policy
The University of Leeds
Leeds, LS2 9JT
UNITED KINGDOM
+44 113.233.4414
Fax +44 113.233.4415
mailto:disability-research-request@mailbase.ac.uk
http://www.leeds.ac.uk/sociology/dru/dru.htm

The approach of the DRU to research is grounded in social model approaches which recognizes that disability is above all a form of institutional discrimination and social exclusion, rather than a product of physical difference between individuals. The DRU has been at the forefront of promoting this approach amongst the international research community.

The DRU seeks to adopt “committed” and “emancipatory” methods in all research projects. This is achieved wherever possible by devolving control over the production and dissemination of research–to individual research participants and to democratic organizations controlled by people with disabilities.

National Council on Disability
1331 F Street, N.W., Suite 1050
Washington, DC 20004
(202) 272-2004
TTY: (202) 272-2074
FAX: (202) 272-2022
mailto:mquigley@ncd.gov
http://www.ncd.gov/

The National Council on Disability (NDC) is an independent federal agency that “promotes policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature of severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.”

Center on Human Policy
Syracuse University
805 South Crouse Avenue
Syracuse, New York 13244-2280
(315) 443-3851
TTY: (315) 443-4355
FAX: (315) 443-4338
Toll free: 1-800-894-0822
mailto:thechp@sued.syr.edu
http://soeweb.syr.edu/thechp/

The Center on Human Policy produces a range of informational materials on community integration. The Center continues to identify and document innovative approaches to help people with developmental disabilities participate in the community, and is especially interested in home ownership approaches, self-directed personal assistance, inclusive social-recreational programs, individualized funding streams, and strategies to meet the needs of culturally diverse groups.

Society for Disability Studies
c/o Robert Scotch
School of Social Science
University of Texas
Box 830688, Mail Station GR3.1
Richardson, TX 75083-0688
(972) 883-4122
FAX: (972) 883-2735
http://www.wipd.com/sds/

The Society for Disability Studies is a not-for-profit scientific and educational organization composed of social scientists, scholars in the humanities, disability rights advocates, and providers of services for persons with disabilities. Its stated purpose is “to bring together people from diverse backgrounds to share ideas and to engage in dialogues that cut across disciplinary backgrounds and substantive concerns. SDS is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society.”

MEMBERSHIP FEES (based on income):
Less than $15,000 $15
$15,000 – $30,000 $25
$30,000 – $45,000 $35
Over $45,000 $45

TASH (formerly The Association for Persons with Severe Handicaps)
Suite 210
Baltimore, MD 21204
410-828-8274
FAX: 410-828-6706
mailto:info@tash.org
http://www.tash.org/

TASH is an international advocacy association of people with disabilities, their family members, other advocates and people who work in the disability field. TASH actively promotes the full inclusion and participation of persons with disabilities in all aspects of life.

Membership in TASH includes the Journal of The Association for Persons with Severe Handicaps, the TASH Newsletter, and reduced rates for the annual conference.

MEMBERSHIP FEES:
Contributing member $200
Agency, business or educational institution $190
Individual $ 85
Parent (non-professional), student, or paraprofessional $ 45
Family (group rate) $ 90

World Institute on Disability
510-16th Street, Suite 100
Oakland, CA 94612-1500
(510) 763-4100
TTY: (510) 208-9496
FAX: (510) 763-4109
mailto:webmail@wid.org
http://www.igc.org/wid

The World Institute on Disability is a non-profit public policy center dedicated to the promotion of independence and full inclusion in society of people with disabilities. Founded in 1983 by leaders of the Independent Living/Civil Rights Movement for people with disabilities, WID is committed to bringing policy into action.

Over the past 13 years, WID has earned an excellent reputation for high quality research and public education on a wide range of issues that impact people with disabilities. WID’s board and staff includes experts in the fields of public policy, research, law, non-profit management, education, training, development, and business. More than half of the board and staff are people with disabilities. This enables WID to bring a cross-disability perspective to the policy arena. WID’s innovative personnel policies are national models of affordable reasonable accommodation for people with disabilities, including personal assistance, adaptive technology, flexible work scheduling and telecommuting options.

INTERNET RESOURCES

TITLE:
Disability Studies Forum

SPONSORED BY:
Centre for Psychotherapeutic Studies, University of Sheffield, United Kingdom

PURPOSE:
This forum addresses the social construction of disability and examines both the limitations and abilities of persons with disabilities. The group discusses therapeutic work, self-help and social forms of empowerment and other ways of circumventing societal barriers encountered by persons with disabilities.

ACCESS INFORMATION:
Send e-mail message to: listserv@maelstrom.stjohns.edu In body of message, type “sub DISABLED.”

TITLE:
Disability Studies Web Ring

SPONSORED BY:
Canadian Centre on Disability Studies

PURPOSE:
This Web Ring was created to bring together web sites that are related to the field of Disability Studies, which examines the history, perspectives, culture, literature, sociology and experience of people with disabilities.

ACCESS INFORMATION: http://www.escape.ca/~ccds/webring.html

TITLE:
Disability Social History Project

PURPOSE:
This site looks at the role people with disabilities have played in history, how they have been treated throughout time, and significant events in the history of disability civil rights. An electronic mailing list is also available.

ACCESS INFORMATION:
http://www.disabilityhistory.org/dshp.html
E-Mail: mailto:sdias@disabilityhistory.orgor pchad@disabilityhistory.org

TITLE:
Disability Information for Students and Professionals

ACCESS INFORMATION:
http://www.abilityinfo.com/

This web site seeks to be a one-stop resource for students from around the world who wish to support and work with individuals with disabilities. This site also is intended for professionals within the field to continue in their knowledge. Includes daily news, job postings, a bulletin board area, more than 250 links, and live chat.

TITLE:
Canadian Centre on Disability Studies

SPONSOR:
University of Manitoba Winnipeg, Manitoba

ACCESS INFORMATION:
http://www.escape.ca/~ccds/

The Canadian Centre on Disability Studies is a consumer-directed, university-affiliated centre involved in research and education on disability issues. The CCDS is committed to fostering a spirit of collaboration between the disability and academic communities and other interested parties on initiatives of mutual interest and benefit nationally and internationally. They are also the sponsor for the Disability Studies Web Ring.

TITLE:
Disability-Research Discussion List

SPONSOR:
Disability Research Unit, University of Leeds

ACCESS INFORMATION:
You can join the list by sending the following message to mailbase@mailbase.ac.uk: join disability-research your name

This is an international e-mail discussion list administered at the DRU by Mark Priestley. The list (started in December 1994) is the largest of its kind in the world, and provides a forum for discussion on all aspects of disability research–both theoretical and practical.

The list is intended for all those interested in research as it affects disabled people both in the UK and internationally. It provides a forum for the exchange of ideas, information and news, particularly among researchers working within a social model of disability.

The list provides an opportunity for researchers, students and disabled people to share their ideas, experiences and research findings. It is also an excellent place to ask questions or seek information.

List compiled by: Nancy Weiss, Co-director, The National Leadership Consortium on Developmental Disabilities, and Lisa Fong, Graduate Assistant, Center for Disabilities Studies Center for Disabilities Studies, College of Human Services, Education &Public Policy, University of Delaware 461 Wyoming Road • Newark, DE 19716 • 302-831-6974 (voice) • 302-831-4689 (TDD) • www.udel.edu/cds/

Please send suggestions for additional books to include or comments to: nweiss@udel.edu

The original intention of the following list of recommended books was to provide students in a disability studies class with a list of resources that could give an “insider’s view” of a disability experience from various approaches, perspectives, and types of disability. Many people graciously contributed books that have illuminated the disability experience for them, books that have informed them of the injustices that have occurred – and continue to occur – toward people with disabilities, or books that have reflected their own experiences. This list, however, is not – and may never be – fully complete. If you have favorite memoir-style books that you think should be included, please forward us information about the book. This list includes months of good reads…we hope you will enjoy exploring these books and getting a more personal understandings of people’s many different disability experiences.

These books are divided into the following sections: The first section presents books written by people with disabilities or by family members. Most are memoir-style accounts. They convey the experience of disability through first person accounts. Some are collections of essays and other writings by people with disabilities. Following this list are some additional recommendations which include fiction, non-fiction, books for children, and films. Several of the following suggested books are from the Disability Studies: Information and Resources List edited and compiled by Taylor, Shoultz, and Walker (2003), with contributions from Jagdish Chander, Beth Ferri, Perri Harris, Lori Lewin, Michael Schwartz, Zach Rosetti, Julia White, and Rachael Zubal-Ruggieri, for the National Resource Center on Supported Living and Choice, Center on Human Policy, School of Education, Syracuse University. Unless otherwise noted, the list of films and their synopses are from the Disabilities Studies list (Taylor, Shoultz, and Walker, 2003), as well. For more information on the Syracuse University Disability Studies list, please visit: http://thechp.syr.edu/Disability_Studies_2003_current.doc. For larger lists of documentaries, including major motion pictures, two sources are the UC Berkeley Media Resources Center lists about the disability experience (http://www.lib.berkeley.edu/MRC/disability.html) or Films Involving Disabilities (http://www.caravan.demon.co.uk).

Recommended Books about the Disability Experience

Barron, J., &Barron, S. (1992). There’s a boy in here. New York: Simon &Schuster.

There’s A Boy In Here tells two stories: that of the mother of a child with autism, and that of the child. Barron describes in great detail her son Sean’s difficult behaviors, his tantrums, his compulsions and fixations, his seeming indifference to his family, and her own tumultuous efforts to simultaneously understand his behaviors and help him diminish them. Sean then retells some of these accounts with his own memories of these events; in particular, he emphasizes how these behaviors were not only pleasurable for him, but were an attempt to control his environment and lessen the possibilities of failure. Except for nine months he spent in a residential school, Sean was fully included in general education throughout his schooling and Sean provides a detailed perspective of his classroom experiences. While the account provides the perspectives of both the parent and the person with autism, unfortunately, the narrative ultimately reinforces the idea that autism is something to be cured or overcome (Source: Center on Human Policy, Syracuse University).

Bauby, J. (1997). The diving bell and the butterfly. New York: Alfred A. Knopf.

On December 8 1995, Elle magazine editor-in-chief Bauby suffered a stroke and lapsed into a coma. He awoke 20 days later, mentally aware of his surroundings but physically paralyzed with the exception of some movement in his head and left eye. Bauby had Locked-in-Syndrome, a rare condition caused by stroke damage to the brain stem. Eye movements and blinking a code representing letters of the alphabet became his sole means of communication. It is also how he dictated this warm, sad, and extraordinary memoir. Bauby’s thoughts on the illness, the hospital, family, friends, career, and life before and after the stroke appear with considerable humor and humanity. Actor Rene Auberjonois’s narration adds to the poignancy of the story. Sadly, Bauby died of his condition in 1997 (Source: Stephen L. Hupp, Univ. of Pittsburgh at Johnstown Lib., Library Journal, Amazon.com).

Beck, M. (2000). Expecting Adam: A true story of birth, rebirth, and everyday magic (Reissue ed.). New York: Berkley.

Expecting Adam is an autobiographical tale of an academically-oriented Harvard couple who conceive a baby with Down’s syndrome and decide to carry him to term. Despite everything Martha Beck and her husband John know about themselves and their belief system, when Martha gets accidentally pregnant and the fetus is discovered to have Down’s syndrome, the Becks find they cannot even consider abortion. The presence of the fetus that they each privately believe is a familiar being named Adam is too strong. As Martha’s difficult pregnancy progresses, odd coincidences and paranormal experiences begin to occur for both Martha and John, though for months they don’t share them with each other. Martha’s pregnancy and Adam become the catalyst for tremendous life changes for the Becks (Source: Excerpted from Ericka Lutz, Amazon.com). Recommended by Donna Martinez, Co-Vice President, National Coalition on Self Determination; and Sue Swenson, Executive Director, The Arc of the United States.

Bérubé, M. (1996). Life as we know it: A father, family, and an exceptional child. New York: Vintage Books.

This remarkable book is a father’s story of the life of his 4-year-old son James, who has Down syndrome. It is far more than just a personal memoir of his son’s birth and young life. In following the developmental stages, social experiences, and involvement with social services that James passes through, Bérubé explores their social implications, including such topics as IQ testing, the politics of education, disability law, social services, health care, and entitlements. Implicit in these discussions are not just his own family’s experiences in these realms, but also concepts such as social justice, what it means to be human, what kind of society is valued, and by what means we determine this value (Source: Center on Human Policy, Syracuse University).

Blackman, L. (1999). Lucy’s story: Autism and other adventures. Mt. Ommaney, Australia: Book in Hand.

In her autobiography, Lucy Blackman gives a very detailed insider’s view of autism before and after she learned to communicate through typing. This book, as well as being a fascinating autobiographical narrative, is essential reading on the aspects of sensory discrimination, issues of visual perception, and discussion of the rituals associated with autism. Blackman also provides an in depth discussion of her school placements, what worked, what did not work in her school settings, and how her family relationships bridged both her school and communication gaps. A majority of the book provides a comprehensive discussion of the method of facilitated communication. (Source: Center on Human Policy, Syracuse University).

Bogdan, R., &Taylor, S. J. (1994). The social meaning of mental retardation: Two life stories. New York: Teachers College Press.

The concept of mental retardation is challenged through life histories based on in-depth interviews with former residents of institutions for people labeled mentally retarded. The authors argue that mental retardation is not a real entity, but rather a social construction (Source: Center on Human Policy, Syracuse University). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Brown, C. (1998). My left foot. London: Vintage. (Original work published 1954).

My Left Foot tells of the childhood and adolescence of Christy Brown, the author. Though Brown is born with severe cerebral palsy, unable to communicate or control his movements, his mother believes that his mind is unaffected. Her confidence in Brown’s growing abilities never falters as her son grows up and becomes increasingly aware of his physical disabilities (Source: BookRags.com).

Brown, S.E. (2003). Movie stars and sensuous scars, essays on the journey from disability shame to disability pride. Lincoln, NE: iUniverse.

Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride is a combination of autobiographical stories about living with a disability, scholarly essays about disability rights and disability culture, and profiles of disability rights leaders, in the context of a world-wide disability rights movement by Steven E. Brown, Ph.D., Co-Founder, Institute on Disability Culture, and Resident Scholar, Center on Disability Studies at the University of Hawai’i, who is an internationally-renowned disability rights activist. Brown is a historian and award-winning poet, Brown’s written five books about disability rights and culture and six books of poetry (Source: DisabilitiesBooks.com). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Buck, P.S. (1992). The child who never grew. Bethesda, MD: Woodbine House. (Original work published 1950).

This edition brings back into print a classic in disability literature. Written by a Nobel and Pulitzer prize- winning author, this personal account broke a national taboo when it was originally published in 1950. Buck’s inspiring account of her struggle to help and understand her daughter with mental retardation was perhaps the first disclosure of its kind by a public figure. Today, much of the emotional experience Buck so eloquently describes still rings true. New material written especially for this edition amplifies her story and gives the book an important historical perspective (Source: WoodbineHouse.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; Deborah Safarik; and Sue Swenson, Executive Director, The Arc of the United States.

Brantlinger, E., Klein, S., &Guskin, S. (1994). Fighting for Darla: Challenges for family care and professional responsibility: The case study of a pregnant adolescent with autism. New York: Teachers College Press.

From the authors’ Foreward: “Often the professional literature implies that a consensus exists regarding meeting needs and delivering services to people with disabilities. On the contrary, our research has led us to the strong conviction that tentativeness, anxiety, and misgivings often surround the actions of those providing care and well as those who receive care. Darla reminds us that the real world is complicated and never easy; she forces us to struggle with our own sense of helplessness and despair when the real world does not live up to our expectations. Although she has not language that we can understand, Darla teaches us….” (Source: Excerpted from Ontario Adult Autism Research and Support Network Book Review, www.ont-autism.uoguelph.ca/). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Callahan, J. (1989). Don’t worry, he won’t get far on foot. New York: Vintage Books.

Equal parts laugh-out-loud funny and angering to the point of disbelief, this is John Callahan’s story told in his own words and pictures. John is a cartoonist whose work not only challenges but attacks and explodes social norms. He is also a quadriplegic and recovering alcoholic who has suffered through abusive support providers, endured battles with the welfare system, maintained his vicious sense of humor, and emerged from some difficult times happy, successful, and determined to change prevailing attitudes about disability, potential, normalcy, and employment. He shares his experiences and lessons learned in a straightforward way that does not allow pity or ego to enter the picture (Source: Center on Human Policy, Syracuse University).

Clare, E. (1999). Exile &pride: Disability, queerness, and liberation. Cambridge, MA: South End Press.

Eli Clare investigates disability, class, queerness, child sexual abuse, and conflicting political and environmental awarenesses, using the metaphors of landscape and her own experience. She recalls and brings to life images of the mountains and forests, rivers and oceans of her childhood in rural Oregon, her body, and her many homes, in these musings on home, exile, politics and experience (Source: Center on Human Policy, Syracuse University).

Crane, G.T. (2004). Aidan’s way: The story of a boy’s life and a father’s journey. Naperville, IL: Sourcebooks.

Sam Crane was unprepared to be the father of Aidan, a boy who would never walk, talk or see. Aidan’s Way is an endlessly inspiring account of parental love and devotion, of the lessons of ancient eastern philosophy and of what it means, ultimately, to be human (Source: SpecialNeeds.com). Recommended by Susan Marks, Associate Professor, Northern Arizona University.

Crimmins, C. (1991). Where is the mango princess? New York: Knopf.

Although it was frightening when Crimmins’s husband, Alan, an attorney, suffered a traumatic brain injury while on a family vacation, it was his long-term rehabilitation that proved most daunting, for brain injuries can cause significant personality changes. This chronicle of Al’s injury, treatment and rehabilitation shows how perplexing and stressful traumatic brain injury can be for both victim and family (Source: Excerpted from Kim Witherspoon, Publisher’s Weekly, Amazon.com).

De Vinck, C. (1988). The Power of the powerless. New York: Doubleday.

De Vinck writes about his brother Oliver, who lives a life of profound disability, and shows how much Oliver means to him and to all he comes in contact with. Oliver “lay in the same bed for 33 years, unable to see, walk, communicate or feed himself.” The book jacket says the book “is a doorway into the deep lessons of life, love, and faith Christopher de Vinck learned from his brother Oliver. It poignantly affirms the immeasurable worth of every person.” The book has introductory and closing remarks by Henri Nouwen, Sargent Shriver and Fred (Mr.) Rogers. Recommendation and review by David Coulter, M.D., Department of Neurology, Children’s Hospital, Boston, Massachusetts.

Dorris, M. (1989). The broken cord. New York: Harper Perennial.

When Michael Dorris, 26, single, working on his doctorate, and part Indian himself, applied to adopt an Indian child, his request was speedily granted. He knew that his new three-year-old son, Adam, was developmentally disabled; but he believed in the power of nurture and love. This is the heartrending story, full of compassion and rage, of how his son grew up mentally retarded, a victim of Fetal Alcohol Syndrome. The volume includes a short account of his own life by the 20-year-old Adam, and a foreword by Dorris’s wife, the writer Louise Erdrich. The Broken Cord won a National Book Critics Circle Award in 1989 (Source: Amazon.com).

Dubus, A. (1998). Meditations from a movable chair: Essays. New York: Vintage.

His second essay collection, Meditations from a Movable Chair, is about the people who have meant the most to him. The book conjures a cloud of witnesses–Dubus’s father, his sister, Norman Mailer, Liv Ullmann, a gay military officer–so vividly that their gifts to Dubus become gifts to the reader, as well. Many of these people helped Dubus understand the holiness, even sacramentality, of everyday life, which he describes in explicitly Catholic terms. Meditations from a Movable Chair is a rare and wonderful thing–a book written out of love, whose richness of heart is expressed by an exacting and challenging mind (Source: Michael Joseph Gross, Amazon.com).

Fadiman, A. (1997). The spirit catches you and you fall down: A Hmong child, her American doctors, and the collision of two cultures. New York: Farrar, Straus &Giroux.

Lia Lee was born in 1981 to a family of recent Hmong immigrants, and soon developed symptoms of epilepsy. By 1988 she was living at home but was brain dead after a tragic cycle of misunderstanding, overmedication, and culture clash: “What the doctors viewed as clinical efficiency the Hmong viewed as frosty arrogance.” The Spirit Catches You and You Fall Down is a tragedy of Shakespearean dimensions (Source: Center for Disabilities Studies, University of Delaware).

Featherstone, H. (1981). A difference in the family (2nd ed.). New York: Basic Books.

In this wise, compassionate account, Helen Featherstone, educator and mother of a severely disabled child, traces the long, often heartbreaking road toward complete acceptance of disability. Drawing on interviews with parents and professionals, published accounts, and her own personal experience, she discusses how parents and siblings cope with their feelings of fear, anger, guilt, and loneliness (Source: Publisher book description, Amazon.com). Recommended by Jamie Ruppmann, Associate Director, The Advocacy Institute; Sue Swenson, Executive Director; The Arc of the United States; and Lynne Tamor, Parent and Advocacy Coordinator, Association for Children’s Mental Health.

Fries, K. (1997). Body, remember. New York: Plume.

In this memoir, Kenny Fries explores his life and experiences with his disability. Having been born with congenital deformities that affected the lower part of his body, Fries searches medical records, talks with family and friends, and examines past relationships in order to better understand his disability. In addition to an understanding of his physical body, Fries also explores his sexuality and personal relationships. This is a memoir about disability, but it is also about the discovery and understanding of his identity (Source: Center on Human Policy, Syracuse University).

Fries, K. (Ed.). (1997). Staring back: The disability experience from the inside out. New York: Plume.

This book explores the experience of disability through writings by contributors who have disabilities. The collection includes nonfiction, poetry, fiction, and drama by such authors as Nancy Mairs, John Hockenberry, Anne Finger, Adrienne Rich, Mark O’Brien, and Marilyn Hacker. Each chapter explores disability not as something that limits one’s life, but as an experience all its own. Fries considers the theme of this edited book as one of human connection, “connection with the past, connection with one another, connection with our bodies, connection with ourselves.” (Source: Center on Human Policy, Syracuse University).

Galli, R. (2000). Rescuing Jeffrey, Chapel Hill: Algonquin Books.

In one terrible instant, on July 4, 1998, the lives of the Galli family changed forever. Their 17-year-old son dove into a pool and broke his neck when his head hit the bottom. So begins the account of the next 10 days in Jeffrey’s life as told by his father. When the Gallis were informed that their son’s fracture had resulted in quadriplegia, their world crumbled. As doctors, specialists, social workers, and clergy tried to explain the future that Jeffrey was facing, his parents started to consider another possibility. Perhaps life under those conditions was not the best choice for their son-maybe the best option for Jeffrey was death. This is an honest and heartrending account of a family facing a dire reality (Source: Excerpted from Carol DeAngelo, Kings Park Library, Burke, VA, School Library Journal).

Gill, B. (1997). Changed by a child. New York: Doubleday.

Raising a child with a disability can often be more isolating and frustrating than any parent ever imagines. Finally, here is a book that honestly describes the inner needs and range of issues parents with disabled children face. Changed by a Child invites parents to take a moment for themselves. Each of the brief readings offers comfort and hope as they capture the unique challenges and joys of raising a disabled child. (Source: RandomHouse.com). Recommended by Sue Swenson, Executive Director, The Arc of the United States; and Susan Yuan, Associate Director, Center on Disability and Community Inclusion, University of Vermont.

Gottlieb, D. (2006). Letters to Sam: A grandfather’s lessons on love, loss, and the gifts of life. New York: Sterling Publishing Co., Inc.

In the tradition of such bestsellers as Tuesdays with Morrie, this is a powerful collection of love letters from a quadriplegic grandfather to his autistic grandson. Written by award-winning radio host and psychologist Daniel Gottlieb, it is sure to touch readers deeply. (Source: SpecialNeeds.com).

Grandin, T. (1995). Thinking in pictures: And other reports from my life. New York: Bantam.

Thinking In Pictures is about the childhood and development of Temple Grandin, a woman with autism. She likens herself to the robotic character, Data, on the television program, Star Trek: The Next Generation . She says words are like a second language to her, noting that she thinks primarily in images. Grandin, who holds a Ph.D. in animal science and has designed equipment that revolutionized the livestock industry, proposes that genius and autism may sometimes be closely related (Source: Center on Human Policy, Syracuse University). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Grandin, T., &Scariano, Margaret M. (1986). Emergence: Labeled autistic. Novato, CA: Arena Press.

Temple Grandin’s groundbreaking book chronicles the remarkable and inspiring true story of how she overcame autism-with a new introduction. Temple Grandin was diagnosed with autism at the age of three. An intelligent child with a thirst for knowledge, but unable to properly express herself or control her behavior, Temple struggled through grade school. Eventually moved from a ‘normal’ school to an educational program for autistic children, she began to suffer ‘nerve attacks.’ Now Temple tells the story of how she went from a fear-gripped, autistic child to a successful professional and a world leader in her field. A chronicle of perseverance and courage, Emergence gives new hope and insight into the tragedy of autism and the vast potential of the human spirit (Source: Book Description, Amazon.com). Recommended by Deb Einhorn, Director, Family Matters, Family Support Program, Parent Training and Information Center and ARC Community Support System.

Grealy, L. (1994). Autobiography of a face. New York: HarperCollins.

The narrative’s starting point of view is that of Grealy as a child, from her early diagnosis of cancer at age nine, replete with the singular distinction of being sick and not having to turn in a book report, through surgery that removed half of her jaw, almost three years of radiation and chemotherapy, to her growing awareness that she is experientially set apart from her family, her classmates, and her physicians. The book chronicles her hospital and school experiences as well as her internal struggle to eschew the mirrors that reflect difference, what she gradually realizes is, by society’s standards, her “ugliness” or to embrace the mirrors that reflect liberation from image and instead reflect the face of the self (Source: Center on Human Policy, Syracuse University).

Greenfeld, J. (1989). A child called Noah. (Reissue ed.). New York: Pocket Books.

The joy and hope with which Greenfeld recorded Noah’s birth in his journal were not to last. By the age of two and a half, Noah had stopped talking, had difficulty performing the simplest tasks, and could not communicate with his parents. No matter what the label – autistic or severely retarded – Noah was a child who would grow old but would never grow up, and for whom no cure is available. The doctors consulted by the Greenfelds were as baffled as Noah’s beleaguered parents. Vacillating between hope and despair, and increasingly aware of the impact caring for a child like Noah would have on their lives, the anguished Greenfeld family journeyed from New York to Connecticut to California in search of help. A Child Called Noah is an honest, harrowing, and profoundly human story (Source: Wyoming Parent Information Center, http://www.wpic.org/).

Hale, M.J.G., &Hale, Jr., C.M. (1999). I had no means to shout. Bloomington, IN: 1st Books.

Hale, a man with autism, discovered the communication technique of facilitated communication (FC) when he was 36 years old and this book chronicles his life before and after he began to use FC. The narrative provides, in Charles’ voice, a fascinating and detailed insiders’ perspective to what autism feels like, how Charles’ apraxia and dyspraxia have affected his life and his communication, and how FC allows Charles not to emerge from autism, but rather, to express himself “as the intelligent, cognizant man he really is” (Source: Center on Human Policy, Syracuse University). Recommended by Cornelia Moisuk, Parent.

Hall, M.L. (1998). Dazed and fatigued in the toxic 21st century (1998). Los Angeles: Consafos.

In his senior year at UC Berkeley, author Mark Llewellyn Hall comes down with a mysterious illness. His quest for a cure forces him to completely transform his life, which ultimately becomes the key to his miraculous recovery. Written in a young, alternative voice that weaves powerful prose with original poetry, “Dazed and Fatigued in the Toxic 21st Century” reveals a remarkable story of determination and personal insight, that sheds new light on what it means to grow up and live in today’s toxic age. (Source: Book Description, Amazon.com).

Harland, K. (2002). A will of his own: Reflections on parenting a child with autism. Bethesda, MD: Woodbine House.

Reflecting on her life before and after motherhood, Harland finds that despite the pain and chaos of Will’s autism, her life’s horizon has stretched and grown. Her son’s disorder has pulled her in directions she never meant to go, but wouldn’t reverse for anything. A Will Of His Own should be enjoyed by other parents whose child has taken them into uncharted territory, as well as by readers who want to imagine what that journey entails. (Source: Excerpted from publisher book description, WoodbineHouse.com). Recommended by Deanna Pedicone, Project Coordinator, Center for Disabilities Studies, University of Delaware.

Hockenberry, J. (1995). Moving violations: War zones, wheelchairs, and declarations of independence. New York: Hyperion.

Moving Violations is an honest and often humorous account of Hockenberry’s life as a man with a disability. He takes the reader on a journey in which he reflects upon the events in his life, from the accident that, at age 19, caused a spinal cord injury, to his work as a nationally renown broadcast journalist. He does not flinch at talking about the personal aspects of disability. And he shares the adventures of his career, such as riding a mule up a mountainside with Kurdish refugees who were being driven from their land by the Iraqis after Desert Storm. Hockenberry also explains how his disability, rather than limiting him, is a window through which he frames his view of the world–how it expands his gaze and gives him insight that defines who he is and what he does (Source: Center on Human Policy, Syracuse University). Recommended by Maureen Keyes, Associate Professor, University of Wisconsin – Milwaukee.

Jacobs, M.B. (2006). Secret girl. New York: St. Martin’s Press.

Secret Girl is a memoir about a well-to-do Baltimore family that for decades guarded a secret they felt too ashamed to reveal, much less discuss among themselves. When Brucie Jacobs, the family’s eldest daughter, finds herself newly sober at the age of 38, she finally seeks out and comes face-to-face with this secret—a younger sister Anne who was diagnosed at birth with hydrocephalus and mental retardation, then institutionalized. Anne has never been home to visit, and Jacobs has never seen her. This memoir goes beyond the story of simply one family; it sheds light upon the struggle for human connection that we all share, and upon the need to accept one’s limitations, as well as to learn forgiveness (Source: MollyBruceJacobs.com). Recommended by Steve Eidelman, Robert Edelsohn Professor, Department of Individual and Family Studies, University of Delaware; and Liz Weintraub, Quality Enhancement Specialist, Council on Quality in Leadership.

Jezer, M. (1997). Stuttering: A life bound up in words. New York: Basic Books.

Despite his participation in several forms of treatment, Jezer did not achieve fluency. His memoir tells of his experiences with dysfluency but also of his successes and satisfactions in professional and personal life (Source: Ray D. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html).

Johnson, H.M. (2006). Too late to die young: Nearly true tales from a life. New York: Picador.

With a voice as disarmingly bold, funny, and unsentimental as its author, a thoroughly unconventional memoir that shatters the myth of the tragic disabled life. Harriet McBryde Johnson isn’t sure, but she thinks one of her earliest memories was learning that she will die. The message came from a maudlin TV commercial for the Muscular Dystrophy Association that featured a boy who looked a lot like her. Then as now, Johnson tended to draw her own conclusions. In secret, she carried the knowledge of her mortality with her and tried to sort out what it meant. By the time she realized she wasn’t a dying child, she was living a grown-up life, intensely engaged with people, politics, work, struggle, and community. Due to a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With help, however, she manages to take on the world. From the streets of Havana, where she covers an international disability rights conference, to the floor of the Democratic National Convention in Chicago, to an auditorium at Princeton, where she defends her right to live against philosopher Peter Singer, she lives a life on her own terms. And along the way, she defies and debunks every popular assumption about disability (Source: Excerpted from Book Description, Amazon,com). Recommended by Fredda Brown, Professor, Special Education, Department of Educational and Community Programs, CUNY/Queens College, Division of Education.

Johnson, R., &Williams, K. (1999). Lost in a desert world: The autobiography of Roland Johnson. Wallace, CA: Massey-Reyner.

Forty or fifty years ago, when a child was born with a developmental disability – mental retardation, in Roland Johnson’s case – the doctor would invariably counsel the parents to put their son or daughter away and forget about them. Roland Johnson’s mother and father did not take this advice. But in the 1950s in Philadelphia they had no one to help them – no counselors, no psychologists, no therapists, no teachers. And when the problems that Roland’s disability presented began to overwhelm them, they had no choice but to resign themselves to that original advice. Roland Johnson spent half his childhood at Pennhurst State School outside Philadelphia, where he saw fellow residents abused and where he himself was abused. But somehow he was able to keep his spirit alive. When he won his freedom as a young adult, he spent several years putting his life together. Then, as president of Speaking for Ourselves, he became an internationally known speaker and leader in the self-advocacy movement (Source: Excerpted from Book Description, Amazon.com). Recommended by Ruthie Marie Beckwith, Director, Tennessee Microboards Association; Donna Martinez, Co-Vice President, National Coalition on Self Determination; Phil Smith, Assistant Professor, Special Education, Eastern Michigan University; and Liz Weintraub, Quality Enhancement Specialist, Council on Quality in Leadership.

Karasik, P., and Karasik, J. (2003). The ride together: A brother and sister’s memoir of Autism in the family. New York: Washington Square.

In this remarkable book, the Karasiks present a sibling’s viewpoint of growing up with autism. Alternating between Judy’s memoir and Paul’s comics, they chronicle the life of their brother, David, from the 1950s to today. The authors recount the heartbreaks and joys of growing up with an autistic sibling and offer insights into the treatment of the condition at a time, when the medical and educational professions knew little about it and blamed parents (namely, “refrigerator moms”). Events such as David’s recitations of whole TV shows and his slapping his head as a response to uncomfortable situations take on new meaning through the unique format. Judy formerly worked as a book editor, and Paul is a professional cartoonist. Their book fills an important gap in the literature, complementing the parental view found in most autism narratives. This work is strongly recommended for all public libraries and academic libraries with collections on autism and disability studies, as well as for book groups that wish to include a graphic novel. Given the focus on children with special needs, secondary school libraries should also consider it (Source: Corey Seeman, Univ. of Toledo Libs., OH, School Library Journal, Amazon.com). Recommended by Karen Lee, Executive Director, SEEC.

Kaufman, B., &Kaufman, R. (1994). Son-rise: the miracle continues (Reprint ed.). Tiburon, CA: H.J. Kramer.

The original Son-Rise (1976) described the family trauma of the author, his wife Samahria and their son Raun, who had been diagnosed as autistic, mentally retarded and untreatable. Rather than relegating Raun to permanent institutionalization, the Kaufmans designed a program of their own, which provided intensive therapy on a rigorous schedule that changed all of their lives. Did Raun continue to progress? In this book, that question is answered not only by the parents and extended family but also by Raun himself, now a college student and a participant in the family’s educational foundation, The Option Institute and Fellowship, based in Sheffield, Mass. Testimonials from similarly afflicted families who practice the Kaufmans’ techniques for treating the communications disorders of so-called “unreachable” children round out a heartwarming, inspiring chronicle that should offer hope to many (Source: Publishers Weekly, Amazon.com). Recommended by Ron Taylor, Independent Filmmaker.

Kaufman, S. (1999). Retarded isn’t stupid, mom! (Rev. ed.). Baltimore: Paul H. Brookes.

Nicole is 2 years old, and her family, after months of worrying, has just learned she has mental retardation. In a fast-paced, engaging story, mother Sandra Kaufman frankly reveals the feelings of denial, guilt, frustration, and eventual acceptance that result in a determination to help her child live an independent life. This edition, revised on the 10th anniversary of the book’s original publication, adds a “progress report” that updates readers on Nicole’s adult years and reflects on the revolutionary changes in society’s attitudes toward people with disabilities since Nicole’s birth. Retarded Isn’t Stupid, Mom! remains a celebration of all that a child can grow to be (Source: BrookesPublishing.com). Recommended by Cynthia Levine, Shrieber Clinical Services Corporation (who remembered this book being recommended by Rosemary Dybwad).

Keith, L. (Ed.). (1994). Mustn’t grumble: Writings by disabled women. London: The Women’s Press.

This book presents writings by other women who have a range of physical disabilities. The short stories and poems included in this book range in topic from issues of accessibility to abuse to equality. Disability is framed by these narratives as a social, cultural, and political issue, not only as a personal one. This is an excellent account of disability issues from a woman’s perspective. It is powerful, moving, and educating for all readers (Source: Center on Human Policy, Syracuse University).

Keith, L. (Ed.) (1996). “What happened to you?”: Writing by disabled women. New York: The New Press.

Disabled women face even greater obstacles than do women generally, and physically challenged lesbians and women of color deal with yet another set of problems. This anthology of prose, poetry, fiction, and personal memoirs by 36 disabled British women provides an interesting view of their life experiences. Full of anger, pain, rage, hope, warmth, humor, and politics, their work shows readers daily life with its struggles, failures, and triumphs (Source: Barbara M. Bibel, Oakland P.L., Cal., Library Journal, Amazon.com).

Kingsley, J, and Levitz, M. (1994). Count us in: Growing up with Down syndrome. San Diego: Harvest Books.

Kingsley and Levitz write about education, employment, ambitions, families, sex and marriage, and their disability — Down syndrome. At Jason’s birth, the obstetrician said that he’d never learn anything and should be institutionalized. Fortunately, the Kingsleys ignored this advice, and their son has since attended school, written poetry, registered to vote, and memorized scripts for appearances on “Sesame Street” and “The Fall Guy.” Hearing about Down syndrome directly from these young men has a good deal more impact than reading any guide from a professional or even a parent. Their comments are eye-opening and heartening (Source: Denise Perry Donavin, Booklist, Amazon.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; Deborah Safarik, Phil Smith, Assistant Professor, Special Education, Eastern Michigan University; and Liz Weintraub, Quality Enhancement Specialist, Council on Quality in Leadership.

Kisor, H. (1990). What’s that pig outdoors?: A memoir of deafness. New York: Penguin Books.

Kisor, book editor of the Chicago Sun-Times , lost his hearing after a bout with meningitis at age three and has since relied on spoken language and lip reading. With unflinching candor and telling details, Kisor cites the ways in which being deaf among the hearing shaped his personal and professional experiences (Source: Publisher’s Weekly, Amazon.com). Recommended by Maureen Keyes, Associate Professor, University of Wisconsin – Milwaukee.

Klein, S.D., &Kemp, J.D. (Eds.). (2005). Reflections from a different journey: What adults with disabilities want all parents to know. New York: McGraw-Hill.

Most parents of children with disabilities lack personal experience with adults with disabilities. Hearing from people who have lived the disability experience can provide all parents with essential information about the possibilities for their children. Reflections from a Different Journey includes forty inspiring and realistic essays written by successful adult role models who share what it is like to have grown up with a disability (Source: DisabilitiesBooks.com). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Kupfer, F. (1998). Before and after Zachariah: A family story about a different kind of courage. Chicago: Academy Chicago.

An intimate chronicle of one family’s life with a young, severely neurologically disabled child. The author describes and defends the decision to place Zachariah in an institution. A teacher of writing, Ms. Kupfer has publicly and bitterly criticized families who decide to keep their children with disabilities at home. Even those who condemn this attitude, as we do, will nevertheless find this important reading (Source: SpecialNeeds.com). Recommended by Lynne Tamor, Parent and Advocacy Coordinator, Association for Children’s Mental Health.

Kuusisto, S. (1998). Planet of the blind: A memoir. New York: Delta.

“A beautifully written account that graces the reader with painful insight and self-revelation” (Jo Holzer, CDR Executive Director). Kuusisto is a poet, a graduate of the Iowa Writer’s Workshop, and a Fulbright scholar. He is currently director of student services at Guiding Eyes for the Blind, a nationally renowned guide dog school in Yorktown Heights, New York. Kuusisto has been legally blind since birth owing to a condition known as retinopathy of prematurity. In his memoir, he writes about his parents’ denial of his blindness and his struggles to read and learn in a public school. The author describes his long-standing reluctance to accept his disability because he did not want to feel dependent, recounting his attempts to “pass” as sighted throughout childhood and into adulthood. The most hopeful passages of this compelling story occur near the end, when Kuusisto trains at Guiding Eyes for the Blind and receives his guide dog, Corky. Kuusisto’s poetic prose is filled with perceptive reflections on the tribulations of blindness and common misconceptions about the blind (Source: Ximena Chrisagis, Fordham Health Sciences Lib., Wright State Univ., Dayton, Ohio, Library Journal, Amazon.com)

Lee, C., &Jackson, R. (1992). Faking it: A look into the mind of a creative learner. Portsmouth, NH: Heinemann.

Faking It is Chris Lee’s story of almost two decades of academic frustration, matched by remarkable persistence, resilience, and ingenuity. It is a moving account of how people with his problems can be helped to overcome them. The story Chris tells of what happened to him when he wound up in the University of Georgia Learning Disabilities Adult Clinic, where he met Rosemary Jackson, is both a moving account of how people with his problems can be helped to overcome them and, at the same time, a powerful indictment of the system–and it is nationwide–that leaves people like Chris feeling incompetent and stupid (Source: SpecialNeeds.com). Recommended by Maureen Keyes, Associate Professor, University of Wisconsin – Milwaukee.

Linton, S. (2005) My body politic. Ann Arbor, MI: University of Michigan.

While hitchhiking from Boston to Washington, D.C., in 1971 to protest the war in Vietnam, Simi Linton was involved in a car accident that paralyzed her legs and took the lives of her young husband and her best friend. Her memoir begins with her struggle to regain physical and emotional strength and to resume her life in the world. Then Linton takes us on the road she traveled (with stops in Berkeley, Paris, Havana) and back to her home in Manhattan, as she learns what it means to be a disabled person in America (Source: Excerpted from University of Michigan Press description, http://www.press.umich.edu/).

Long, M.S. (1999). If your dreams are big enough, the facts don’t count. Wallace, CA: Massey-Reyner.

Long’s story is deceptively candid and truly intriguing. Clinically, Long has mild cerebral palsy and mental retardation arising from difficulties during his birth. Reading his life story in his words–getting inside his head in a sense–is an eye-opening experience. His story is not terrifically unique or absurd, which is part of the book’s charm: the “fact” of his disability did not stand in the way of his dreams, nor should the reader’s “disabilities,” whether physical, mental or emotional, prevent them from fulfilling their own dreams. The book is honest and forthright. Long’s goal with the book is to pass along his sense of confidence and fortitude, and remind readers that no matter how insurmountable their problems may seem, nothing is impossible. Long eventually became the first person with a developmental disability to be appointed to a government office by a state governor. (Source: Excerpted from Today’s Librarian, September 2000, Virgo Publishing, Inc., http://www.karlwilliams.com/if_your_dreams.htm).

Lubchenco, L. O., &Crocker, A. C. (1997). Bus girl: Poems by Gretchen Josephson. Cambridge, MA: Brookline Books.

This book consists of 25 poems written by Gretchen Josephson, a woman with Down syndrome. She started writing poetry while still in her teens, when she began a job as a bus girl at a restaurant. Her poetry chronicles her life experiences with family, friends, love, and other areas of life. Josephson does not write about disability. Instead, she simply creates poetry about her life (Source: Center on Human Policy, Syracuse University). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Mairs, N. (1997). Waist-high in the world: A life among the disabled. Boston: Beacon Press.

Mairs, a brilliant essayist and poet who has authored six previous books, reflects upon her experiences as a woman with multiple sclerosis. She discusses such topics as adjusting to change, reconciling body image, experiencing sexuality, and seeking equality and justice. She also probes other disability issues, such as assisted suicide and selective abortion, and she revisits an article she once wrote for Glamour magazine that focused on young people with disabilities (Source: Center on Human Policy, Syracuse University).

Marsh, J. (1995). From the heart: On being the mother of a child with special needs. Bethesda, MD: Woodbine House.

In From the Heart: On Being the Mother of a Child with a Disability, nine mothers explore the intense, sometimes painful, emotional terrain of raising children with special needs in eye-opening narratives developed from their parent support group meetings. The children who shape these women’s lives have disabilities that include autism, Down syndrome, Tourette syndrome, and ADD. From the Heart is organized around several themes: relationships with professionals; family life and school issues; and issues about the “self” and closest friends and family. Their experiences resonate with the common struggles of healing; being heard and understood; coping with life; and dealing with greater emotional intensity than most parents do. These mothers affirm the experience of other parents like themselves. From the Heart speaks to anyone who may know little about raising a child with special needs — until they have one and must then forge a strong family unit nonetheless (Source: Excerpted from Midwest Book Review, Amazon.com). Recommended by Lynne Tamor, Parent and Advocacy Coordinator, Association for Children’s Mental Health.

Martin, R. (1994). Out of silence. New York: Henry Holt &Co.

The author’s nephew Ian became autistic after his brain was damaged by a reaction to a routine vaccination for diphtheria, pertussis, and tetanus. The book is a graphic and scholarly account of autism but it also explores the essence of language learning, the child’s attempt to cope with the objective world (Source: Ray D. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html).

Mason, M. (2000). Incurably human. London: Working Press.

Simultaneously personal and philosophical, this book is both a celebration of and call for inclusive communities and schools. Micheline Mason shares some of her experiences growing up and living with a disability in London. She challenges the dominant ideology of the medical model that suggests that she and others with disabilities are broken and need to be fixed, stressing that she is fully human as she is and does not need or desire a cure. The book chronicles her personal journey from experiencing segregation and discrimination to living a full life, fighting prejudice, and working for inclusive societies (Source: Center on Human Policy, Syracuse University).

Matola, T., &Johnson, R. (2002). Don’t pull the plug: A lesson in life. Los Gatos, CA: Intrepid.

Matola was a teacher, a hiker, a dancer. Then at age 61, he suffered a major stroke. Shut off from the world, from almost all communication, from his joys and his livelihood, he felt anger, frustration and despair. When his doctor asked him if he wanted to have the plug pulled, he thought about the life he had, and the life he could look forward to. And he decided to live; to learn to live a new life — a fulfilling life, full of love and growth, and a determination to improve physically, mentally and spiritually (Source: DisabilitiesBooks.com). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Meyer, D. (1995). Uncommon fathers: Reflections on raising a child with a disability. Bethesda, MD: Woodbine House.

Nineteen fathers of children with disabilities write about the loss they felt when their child was born and regaining the pride in their children. They talk about their own self-awareness as well as how other men and members of the community response to their children (Source: Center for Disabilities Studies, University of Delaware).

Miller, N. (1994). Nobody’s perfect: Living &growing with children who have special needs. Baltimore, MD: Paul H. Brookes.

Four “moms” who have had a child with a disability talk about the feelings of loss, acceptance, support, set-backs, and rewards related to their children with special needs. Written in both first person accounts and from professional perspectives, this book examines the emotional, social, and functional impact of having a child with special needs (Source: Center for Disabilities Studies, University of Delaware).

Moise, L. (1980). As we grew up with Barbara. Fort Bragg, CA: Cypress House.

Shares the story of Barbara Moise, born with developmental special needs, and the trials that led to Barbara’s growing independence. Includes overview of the resources available for persons with developmental disabilities and recommendations on important aspects of programs and services (Source: EdGateway.net). Recommended by Ronnie Cohn, Independent Evaluator; and Patty McGill Smith, Parent, Grandmother, Advocate, President, The Arc of Nebraska.

Moise, L. (1998). Barbara and Fred, grownups now. Fort Bragg, CA: Cypress House.

This is a definitive book for parents and social workers in the field of developmental disabilities. This book explores the issues and achievements of a mature couple tracing their growth from birth through significant and intimate relationships. There is not a hint of sentimentality here, just common sense, a bit of humor, political and social awareness, and an unflinching look at the life and times of an American family. The author feels that “attitudes are the real disability” (Source: SpecialNeeds.com). Contains a good list of resources. Recommended by Patty McGill Smith, Parent, Grandmother, Advocate, President, The Arc of Nebraska.

Mont, D. (2001). A different kind of boy: A father’s memoir about raising a gifted child with autism. London: Jessica Kingsley.

A little nine-year old boy looks down at the gymnasium floor. The room is filled with children who like and respect him, but he has no real friends. He can barely name anyone in his class, and has trouble with the simplest things – recognizing people, pretending, and knowing when people are happy or angry or sad. Much of his life has been filled with anxiety. And yet he was only one of seven fourth graders in the United States to ace the National Math Olympiad. In fifth grade he finished second in a national math talent search. That boy is autistic. He is also loving, brilliant and resilient. In this book, his father writes about the joys, fears, frustration, exhilaration, and exhaustion involved in raising his son. He writes about the impact on his family, the travails of navigating the educational system, and the lessons he has learned about life, what it means to connect with other people, and how one builds a life that suits oneself. And, oh, yes, math. Lots about math (Source: Adapted from Jessica Kingsley book description, jkp.com). Recommended by Sue Swenson, Executive Director, The Arc of the United States.

Mukhopadhyay, T. R. (2000). Beyond the silence: My life, the world and autism. London: The National Autistic Society.

This work is an autobiographical narration of a young poet who has autism and it includes a collection of his selected poems with a foreword by Lorna Wing. Rajarshi Mukhopadhyay, known as Tito, wrote this fascinating narration before he was 12 years old. This work represents a realistic presentation of what kind of struggle he and his parents had to go through during his early childhood in his native country (India) where intellectual disabilities like autism are hardly known or recognized. The initial two sections present Tito’s autobiographical narration while the remaining two sections present a collection of his selected poems (Source: Center on Human Policy, Syracuse University).

Murphy, R. F. (1987). The body silent: An anthropologist embarks on the most challenging journey of his life: Into the world of the disabled. London and New York: W.W. Norton.

Robert Murphy, an anthropologist by trade, eloquently and honestly describes how paralysis–and all disability–affects identity and interaction with others based on their reactions to disability. This book is his anthropological field trip to the world of disability, detailing his experiences and thoughts before, during, and after he becomes paralyzed during his 40s. This is a powerful book in which Murphy not only shares his personal story but deals with and challenges the ableism and medical model of disability he endures once he becomes disabled himself (Source: Center on Human Policy, Syracuse University). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Murray, J. B., &Murray, Emily. (1975). And say what he is: The life of a special child. Cambridge, MA: MIT.

The parents of a “special child” who has a severe developmental disability write of their experiences and their growing recognition of the boy’s personality and meaning to their lives (Source: Ray D. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html). Recommended by Susan Yuan, Associate Director, Center on Disability and Community Inclusion, University of Vermont.

Nazeer, K. (2006). Send in the idiots. London: Bloomsbury.

Nazeer, a successful British government policy adviser, was diagnosed early on with autism; he now seeks out the fate of four autistic classmates at his former New York City school. He first encountered the “idiots” (as one of them called the group) more than 20 years ago, in an unnamed private school that has subsequently closed. In addition to interviewing the former pupils, all but one (who committed suicide) enjoying varying degrees of success in the greater world, Nazeer also visits the school’s former director and special-needs teacher to learn how teaching autistic students has evolved. Considered a neurobiological disorder, autism largely confines a child to his or her own mental world. André, for example, living in Boston with his sister, became a competent computer researcher and manages to mediate the challenges of ordinary conversation through the use of a puppet. Randall, a courier in Chicago, demonstrates how early “parallel” play led to a satisfying love relationship (developing empathy is difficult for the autistic). Craig became an accomplished speechwriter until his awkward social skills derailed him, while Elizabeth immersed herself in playing the piano before withdrawing completely. Nazeer delicately interweaves his own story of being “cured” for an enlightening journey through the unreachable mind (Source: Publisher’s Weekly, Amazon.com). Recommended by Steve Drake and Phil Ferguson, E. Desmond Lee Professor in Education of Children with Disabilities, University of Missouri – St. Louis.

Nolan, C. (1987). Under the eye of the clock. New York: Arcade.

Christopher Nolan is an award-winning Irish poet and novelist who has cerebral palsy, uses a wheelchair, and writes with a stick attached to his forehead. Joseph communicates with eye movements, facial expressions, and body language that his family and friends decode, and Joseph used his language to tell his family and teachers at the Central Remedial Clinic School that he wanted to attend the local comprehensive school. While his family is completely supportive and respects Joseph’s autonomy, the board repeatedly turns down Joseph’s application, but Joseph eventually is accepted at the comprehensive school and finishes his primary education there (Source: Center on Human Policy, Syracuse University). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University; and Theresa Rebhorn, Parent of two young adults with disabilities, Assistant Director of Publications, Academy for Educational Development, National Dissemination Center for Children with Disabilities (NICHCY).

Palmer, G. (2005). Adventures in the mainstream: Coming of age with Down syndrome. Bethesda: Woodbine House.

Like many parents, Greg Palmer worries about his son’s future. But his son Ned’s last year of high school raises concerns and anxieties for him that most parents don’t experience. Ned has Down syndrome; when high school ends for him, school is out forever. The questions loom: What’s next? How will Ned negotiate the world without the structure of school? Will he find a rewarding job in something other than food service? To help him sort out these questions and document his son’s transition from high school to work, Palmer, an award-winning writer and producer of PBS documentaries, keeps a journal that’s the basis of this thoughtful and entertaining book (Source: Excerpted from publisher book description, WoodbineHouse.com). Recommended by Deborah Safarik.

Panzarino, C. (1994). The me in the mirror. Seattle: Seal Press.

Written by writer, disability activist, and artist Connie Panzarino, The Me In The Mirror is an autobiography of the life of this amazing woman. Born with a rare disease, Panzarino describes her life as one of struggles and triumphs, and tells the stories of her relationships with her family, friends, lovers, her turn to lesbianism, and of her years of pioneering work in the disability rights movement. This book is a must read for anyone interested in understanding the experiences of women with physical disabilities (Source: Center on Human Policy, Syracuse University).

Park, C.C. (1982). The siege: The first eight years of an autistic child. (Rev. ed). Boston: Little, Brown.

At age two, in 1960, Jessy Park was withdrawn, unable to walk or talk, yet oddly content within the invisible walls that surrounded her. The study of autism was still in its infancy. This powerfully moving book charts a surprising journey of discovery as it records the challenges and rewards of the first eight years of Jessy’s life (Source: Book Description, Amazon.com). Phil Ferguson writes: “Park is an English professor and writes in a way that I found both honest and insightful.” Recommended by Phil Ferguson, E. Desmond Lee Professor in Education of Children with Disabilities, University of Missouri – St. Louis.

Park, C.C. (2001). Exiting Nirvana: A daughter’s life with autism (Reprint ed.). Back Bay Books.

Reprising her own now classic work The Siege, which covered the early years of her autistic daughters life, Clara Claiborne Park gives us a moving, eloquent portrait of Jessy as an autistic adultstill struggling with language, with hypersensitivities and obsessions, and with the social interactions that most of us take for granted, but at the same time achieving more than her parents could have ever hoped for, becoming an accomplished artist, and growing into an active member of her family and community (Source: Book Description, Amazon.com). Recommended by Phil Ferguson, E. Desmond Lee Professor in Education of Children with Disabilities, University of Missouri – St. Louis.

Pieper, E. (1976). Sticks and stones. Syracuse, NY: Human Policy Press.

A very powerful and beautifully written story of Betty’s son Jeff’s first five years, and perhaps partly because Betty was a very early adopter of the principle of normalization, it does not feel out of date. I have given copies to scores of families and staff over the years, and I still use one story from the book in my regular staff training classes. Review and Recommendation by Jack Yates, Secretary-Treasurer, Ohio Safeguards.

Price, R. (2003). A whole new life (Reprint ed.). New York: Scribner.

Price is James B. Duke Professor of English at Duke University. He came to disability as a mature and successful man and writer. He describes the experience in a very moving way and in plain, beautiful English. He also manages to find joy and meaning in the whole experience. Review and Recommendation by Cornelia Moisuk, Parent.

Prince-Hughes, D. (2004). Songs of the gorilla nation: My journey through autism. New York: Harmony Books.

In this elegant and thought-provoking memoir, Dawn Prince-Hughes traces her personal growth from undiagnosed autism to the moment when, as a young woman, she entered the Seattle Zoo and immediately became fascinated with the gorillas. Having suffered from a lifelong inability to relate to people in a meaningful way, Dawn was surprised to find herself irresistibly drawn to these great primates. By observing them and, later, working with them, she was finally able to emerge from her solitude and connect to living beings in a way she had never previously experienced. Songs of the Gorilla Nation is more than a story of autism, it is a paean to all that is important in life. Dawn Prince-Hughes’s evocative story will undoubtedly have a lasting impact, forcing us, like the author herself, to rediscover and assess our own understanding of human emotion (Source: Book Description, Amazon.com). Recommended by Deb Einhorn, Director, Family Matters, Family Support Program, Parent Training and Information Center and ARC Community Support System.

Rabin, R. (1985). Six parts love: One family’s battle with Lou Gehrig’s disease. New York: Scribner.

This biography of the author’s father follows him and his family as they face the trials of amyotrophic lateral sclerosis, a degenerative neurological disease. He was diagnosed with ALS in June of 1979 and died in October 1984, conforming to the usual prognosis of death following diagnosis within 3 to 5 years (Souce: Ray D. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html).

Reston, J. (2006). Fragile innocence: A father’s memoir of his daughter’s courageous journey. New York: Harmony.

Reston writes about his third and youngest child, Hillary, who as a toddler was struck with an unknown medical condition that left her developmentally disabled and with a host of other medical problems. He makes it clear that the state of his daughter’s health has severely impacted her family members’ lives. He makes no bones about the demands her condition has placed on them, just as he shows how much she means to them and to the many other people in her life. The book takes a strong stand in favor of cutting-edge medical research and putting the needs of the disabled in the planning and service forefront of any national heath-care plan. This work could have been a tale of suffering or of triumph over adversity as Hillary survived some close calls and continues to live a rich life, yet her father tells a much more nuanced and enjoyable story (Source: Ted Westervelt, Library of Congress, Washington, DC, School Library Journal, Amazon.com). Recommended by Karen Lee, Executive Director, SEEC.

Russell, M. (1998). Beyond ramps: Disability at the end of the social contract: A warning from an uppity crip. Monroe, ME: Common Courage.

Marta Russell exposes the neoliberal drive to shrink social services with the Reinventing Government mantra. “We are dangerously close to a Jerry Lewis democracy where middlemen beggars and corporate CEOs getting huge paychecks may replace entitlements with charity,” reveals Russell in her devastating analysis of the “reform” of the social safety net. (Source: Book Description, Amazon.com). Recommended by Maureen Keyes, Associate Professor, University of Wisconsin – Milwaukee.

Schaefer, N. (2000). Does she know she’s there? (2nd ed.). Garden City, NY: Doubleday.

First published in 1978, Does She Know She’s There? is the inspiring story of one family’s determination to love, cherish, and keep their only daughter. From the moment the Schaefers were told their first-born Catherine would never walk, or talk, or even feed herself, they swore that to institutionalize her would be their last resort. The keeping of that vow was far from the story of tears and despair that some would assume. “Cath” emerges as an engaging personality in her own right, as terribly challenged as she is. Now 37, Catherine Schaefer lives in her own home, with live-in support, plus friends-cum-tenants in the upstairs apartments. Still unable to move much, or to speak, Catherine’s life has, nevertheless, been a rewarding success story. This book is its chronicle, illustrated with black and white photographs (Source: Book Description, Amazon.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; and David Wetherow, CommunityWorks.

Schaefer, N. (1996). Yes! She knows she’s there. Toronto, ON: Inclusion Press.

Nicola Schaefer has done it again! Her first book (a best seller) regaled us with the struggles of Catherine (her daughter) and Nicola enroute to making a life. Now, a decade after Catherine moved into her own home in Winnipeg, that story – told as only Nicola can. A ‘must read’ for every family even thinking about dealing with children approaching adulthood. A powerful vision of hope, laced with reality and a liberal dash of fun. (Source: Inclusion.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; and David Wetherow, CommunityWorks.

Sellin, B. (1995). I don’t want to be inside me anymore: Messages from an autistic mind (A. Bell, Trans.). New York: Basic Books.

Sellin is a 21-year-old autistic German who has written a slender volume of epigrammatic musings using the technique of facilitated communication, a method whereby the autistic person types messages, one letter at a time, with one finger, using a “facilitator” to support the elbow or arm (Source: Nina Wikstrom Aguilar, MLS, Melbourne, Fla., Library Journal, Amazon.com). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Shaw, B. (Ed.). (1994). The ragged edge: The disability experience from the pages of the first fifteen years of the disability rag. Louisville, KY: Advocado.

“Reading The Ragged Edge [anthology] is like sitting in on a vigorous, sometimes funny, and often irreverent roundtable discussion of the issues that most concern all humanity, disabled and nondisabled, whether they admit it or not. Some of the voices are reflective, some sad, some furious, but none will lull you to sleep. On the contrary, you’ll feel ready to roll on out and transform the world.” (Source: Nancy Mairs, author of Plaintext, Carnal Acts, Ordinary Time and Waist High In the World, AvacadoPress.org). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Sienkiewicz-Mercer, R., &Kaplan, S. B. (1989). I raise my eyes to say yes. New York: Avon Books.

A powerful account, written with the assistance of Steven Kaplan, of Sienkiewicz-Mercer’s incarceration in an institution for people labeled mentally retarded. She vividly describes the abuse and neglect she experienced in the institution, and the isolation from family and community. However, the book ends with her description of her successful struggle to gain her freedom, shatter stereotypes, and build a life in the community (Source: Center on Human Policy, Syracuse University). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University; Linda Lengyel, Assistant Professor, Duquesne University; Cynthia Levine, , Shrieber Clinical Services Corporation; Ruby Moore, friend of Ruth’s for 28 years and Executive Director, Georgia Advocacy Office; Lori Noto, Professor, School of Education and Human Resources, University of Bridgeport; and David Wetherow, CommunityWorks.

Simon, R. (2003). Riding the bus with my sister. New York: Plume.

When the book opens, Beth is spending her days riding the buses in the city where she lives, creating powerful connections with the drivers and passengers. Rachel, a driven professor and writer, is struggling to come to terms with her own ambitions and loneliness — as well as her distant feelings toward her one-of-a-kind sister. One day, Beth invites Rachel to join her for a year on the buses. Rachel says yes, and so begins a journey that changes both sisters’ lives. (Source: RachelSimon.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University.

Simons, R. (1987). After the tears: Parents talk about raising a child with a disability. San Diego: Harvest Books.

Preface states, “In parenting a child with a disability, you face a major choice. You can believe that your child’s condition is a deathblow to everything you’ve dreamed and worked toward until now. Or you can decide that you will continue to lead the life you’d planned – and incorporate your child into it. Parents who choose the latter course find they do a tremendous amount of growing.” Well-written book with sections on guilt and anger, adjustments, isolation, marital stress, relatives, siblings, other family needs, strangers, professionals, the school system, meeting one’s own needs, chronic sorrow, communication, and personal growth. Highly recommended for both parents and professionals. (Source: The Arc Minnesota, http://www.arcminnesota.com/res-parents.htm).

Speciner, J., &Godwin, P. (2006). Finally, dreams coming true. Lulu.com: Author.

This is a book with a twofold purpose. It is a memoir about the life, challenges, and accomplishments of Jacquie, a woman with cerebral palsy. It is also a resource for people with disabilities who want to live independently (Source: Lulu.com)

Taylor, R. (1991). All by self: A fathers story about a differently-abled child. Boulder, CO: Light on Books &Videotapes.

It is beautifully illustrated in pencil/paper and some color drawings by both Micah and his brother Jonah. The book was revised in 1995 with an additional story, fiction but full of insight, about Micah, his brother and mother taking a trip to a healing hot springs for a week. The first chapter is illustrated by Jay Jacoby, and the second chapter (“Bonsai: The Art of Swimming through Life’s Challenges”) is illustrated by Micah and his brother Jonah. Review and Recommendation by Ron Taylor, Independent Filmmaker [for copies, contact author at lightoncom@aol.com].

Thompson, K., &Andrezejewski, J. (1989). Why can’t Sharon Kowalski come home? Denver, CO: Spinsters Ink.

This book by Karen Thompson, a woman whose lover Sharon Kowalski was injured in a car accident, tells the story of her fight to have authority over Sharon’s care and living situation after her brain injury. Kowalski’s parents, to whom she had not yet come out, refused to acknowledge their relationship and took steps to prevent Thompson from visiting or having any say in their daughter’s care. Their low expectations of their disabled daughter and of the rehabilitation system, combined with their disbelief and homophobia, resulted in their daughter being warehoused without the opportunity to see many of the people she loved. The book was published before Thompson successfully obtained guardianship. A powerful and descriptive narrative (Source: Center on Human Policy, Syracuse University).

Turnbull, A., &Turnbull, R. (1978). Parents speak out: Views from the other side of the two-way mirror. Columbus: C.E. Merrill.

Ann and Rud Turnbull. Parents of children with disabilities discuss their experience and lives from a number of perspectives. Recommended by Jamie Ruppmann, Associate Director, The Advocacy Institute.

Walker, L.A. (1986). A loss for words: The story of deafness in a family. New York: Harper and Row.

Walker describes her experiences as the hearing child of deaf parents. While growing up, she often served as their ears and mouth, thereby living on the sometimes uneasy border between child and adult roles (Source: Ray D. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html).

Williams, D. (1996). Like colors to the blind. New York: Times Books.

Like Colors to the Blind is Donna Williams’ third book about her life as a person with autism. When she was diagnosed with autism at the age of 25, she wrote Nobody, Nowhere as an attempt to explore her experiences as a person with autistic symptoms. In her sequel, Somebody, Somewhere, she continued to analyze how role-playing and ritualistic behavior helped her to cope with her environment, and how she was able to begin to replace these mechanisms with genuine interactions. This, her latest work, builds upon the last, addressing relationships and emotions. Williams describes her relationship with Ian, who became her best friend and eventually her husband (Source: Center on Human Policy, Syracuse University). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Williams, D. (1992). Nobody, nowhere: The extraordinary autobiography of an autistic. New York: Avon Books.

Donna Williams, who was diagnosed with autism when in her mid 20s, wrote Nobody, Nowhere in an attempt to understand herself and to explore how she fit into the world around her. She candidly describes the teasing and mistreatment she experienced at the hands of her family and her ability to use role-playing to interact with others. Williams said of her book, “This is a story of two battles, a battle to keep out ‘the world’ and a battle to join it. I have, throughout my private war, been a she, a you, a Donna, and finally, an I” (Source: Center on Human Policy, Syracuse University). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; and Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Williams, D. (1994). Somebody, somewhere: Breaking free from the world of autism. New York: Times Books.

This autobiography by Donna Williams poignantly and defiantly illustrates her life and struggle with autism. She powerfully articulates her “awakening to the world” and how she fought for others to do the same. She presents her perspective of autism and reminds readers that it is crucial that they seek to understand her perspective and the perspectives of others with autism rather that imposing their own notions onto someone else. She asserts that she has taken control of her autism, that it does not control her (Source: Center on Human Policy, Syracuse University). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Willmuth, M., &Holcomb, L. (1994). Women with disabilities: Found voices. Binghamton, NY: Haworth Press.

This is a deeply personal and compelling discourse of the body, violence, sexuality, and disability. The authors offer a multicultural perspective, which speaks frankly about their experiences. They discuss the abuses they have endured and explain how they have struggled with the issue of being a woman with a body that does not conform to the image that society values (Source: Center on Human Policy, Syracuse University).

Zuckoff, M. (2002). Choosing Naia: A family’s journey. Boston: Beacon Press.

Halfway through their first pregnancy, Greg and Tierney Fairchild hear the news all expectant parents dread: their baby isn’t perfect. A routine ultrasound reveals that the fetus Tierney carries has a major heart defect. Making matters worse, the nature of the defect leads doctors to suspect it might be a symptom of Down syndrome. With those events as its starting point, Choosing Naia examines the exploding world of prenatal information–and the emotional maelstrom that ensues from an unwanted test result–through the prism of the Fairchild family’s experiences. Rapid advances in prenatal testing are enabling doctors to diagnose with great certainty a wide assortment of problems inside the womb. But that’s where certainty ends. As they struggle with grief and confusion, would-be parents have only days or weeks to make choices–abortion, adoption, or continuing the pregnancy and keeping the child–whose reverberations are bound to alter the course of many lives. In the Fairchilds’ case, those choices are further complicated by race. Having married across racial lines, Greg and Tierney can imagine the discrimination felt by the disabled. Ultimately, that understanding informs their decision about whether and how to parent a disabled child. Once the choice is made, they face a difficult delivery, where Tierney’s vigilance literally saves her baby’s life, and high-risk open-heart surgery before the baby they name Naia can celebrate her first birthday. After clearing those hurdles, the Fairchilds face new barriers they must tear down on behalf of their beloved child for all the days of their lives (Source: Excerpted from Book Description, Amazon.com). Recommended by Deb Einhorn, Director, Family Matters, Family Support Program, Parent Training and Information Center and ARC Community Support System.

Other Recommended Books (Fiction and non-fiction, not memoir-style)

Basford, C. (2005). We dance together: A painted essay about my education with Katie. Seaman, OH: Author.

We Dance Together, A Painted Essay about my Education with Katie, is a picture book that communicates the story of the author’s education with her daughter Katie. The journey begins when the author learns of her daughter’s disability and continues for the next twenty-six years weaving lessons of love, relationships, ambiguity and more. Painted and narrated by the author, We Dance Together features ten richly, evocative images, each revealing a lesson about self and society. The images depict her personal, often joyful revelations that lie in stark contrast to our society’s history of negative attitudes and actions toward people with disabilities (WeDanceTogether.com).

Baskin, A., & Fawcett. H. (2006). More than a mom: Living a full and balanced life when your child has special needs. Bethesda, MD: Woodbine House.

More than a Mom explores how women can lead rich, fulfilling personal lives while parenting a child with special needs. The authors’ skillful blend of research, personal experiences, and survey feedback from over 500 mothers across North America results in a book that is jam-packed with practical strategies, advice, and reassurance for mothers trying to create more manageable and fulfilling lives (Book Description, Amazon.com). Recommended by Deborah Safarik.

Berg, E. (2006). We are all welcome here. New York: Random House.

(Fiction) As a student nurse, Paige Dunn once took care of Elvis Presley’s mother in Tupelo, MS. She contracted polio while pregnant with her daughter and is paralyzed from the neck down. Deserted by her husband and on welfare, Paige relies on Peacie, her black daytime caregiver, and on her daughter, Diana, now 13, for help at night. The teen is devoted to her beautiful, talented mother, yet at times is resentful that her mother’s needs must come before her own. When the girl wins $2500 in a contest, Paige gives most of the money to Peacie for medical care for her boyfriend, who was badly beaten for participating in a civil rights demonstration. When their social worker learns that the money that would have provided for a nighttime caregiver has been used for other expenses, she demands that the situation be remedied. Diana writes to Elvis, enclosing a song her mother had written long ago, he responds with a visit to Paige, and suddenly their life is made infinitely easier. Full of humor, devoid of self-pity, with lively characters that rise above their circumstances, this is the story of an adolescent accepting adult responsibilities, encountering the temptations of boys and booze, and experiencing the tensions between race and class in the 1960s (Source: Molly Connally, Chantilly Regional Library, Fairfax County, VA, School Library Journal, Amazon.com) Recommended by Carol Beatty, Executive Director, The Arc of Howard County.

Biklen, D. (1993). Communication unbound. New York: Teacher’s College Press.

Facilitated communication can open a world of communication to autistic children with other communicatively impaired individuals. This book tells about several personal experiences with facilitated communication, and about the controversy surrounding this method (Source: Adapted from Ray D. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html).

Blatt, B., &Kaplan, F. (1974). Christmas in purgatory: A photographic essay on mental retardation. Syracuse, NY: Human Policy Press.

This is a reprinted edition of Blatt and Kaplan’s 1966 photographic exposé of conditions in America’s institutions. Shot with a hidden camera, Christmas in Purgatory depicts overcrowded and dehumanizing conditions found at eight institutions in the Northeast. Blatt was one of the few professionals to speak out against institutional warehousing in the 1960s (Source: Center on Human Policy, Syracuse University).

Bogdan, R. (1988). Freak show: Presenting human oddities for amusement and profit. Chicago: University of Chicago.

A social history of the depiction of “human oddities,” including people with disabilities, for amusement and profit, Freak Show is a classic study of depictions of disability in popular culture (Source: Center on Human Policy, Syracuse University).

Braddock, D. (Ed.). (2002). Disability at the dawn of the 21st Century and the state of the states. Washington, DC: American Association on Mental Retardation.

This fifth edition is the most extensive edition of The State of the States volumes. Part I explores the historical basis of disability services and includes a cross-disability empirical study of public financial support for disability. Part II presents updated state-by-state profiles, which examine programmatic structure and financing of mental retardation/ developmental disabilities services. Emerging trends and issues are identified, including aging family caregivers, class action litigation with regard to waiting lists for residential services, and the growth of the Medicaid Home and Community Based Services Waiver. Part III is an in-depth comparative study of the development of institutional and community services in two states: Michigan and Illinois (Source: Center on Human Policy, Syracuse University).

Campbell, J., &Oliver, M. (1996). Disability politics: Understanding our past, changing our future. London and New York: Routledge.

This book uses the voices of disabled people to describe the changes in the disability sector in Britain as a result of the social movement of disabled people, particularly in the 1970s to mid 1990s. This work is regarded to be a significant contribution to history, social theory and policy, and political studies. The book clearly traces the emergence and survival of the disability movement and provides an honest evaluation of its successes and failures. It then goes on to consider possible future directions for disabled people in 21st century Britain. It is great contribution to the promotion of the understanding of the disability movement in Britain (Source: Center on Human Policy, Syracuse University).

Charlton, J. I. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California.

The author uses a disability rights standpoint to discuss the international oppression of people with disabilities. He provides a theoretical framework for understanding disability oppression not as something that has come from the attitudes of people without disabilities, but because of systems and structures of oppression from which these attitudes stem. He uses interviews with disability rights activists from around the world to back his argument (Source: Center on Human Policy, Syracuse University). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Cole, J.S. (2002). Getting life. Louisville, KY: Advocado.

(Fiction). Getting Life gets into the mind of the primary character in a way that draws you into her world so completely you don’t want to let her go. As the novel begins the protagonist, Emily, is a non-verbal, nursing home resident who has sat like a lump on a borrowed wheelchair for most of the past seventeen years. But Emily is not a lump; she is a thinking, feeling human being who has never had the opportunity to show her stuff. This is a triumphant story that touches on the lives of staff members of an independent living center and includes an ADAPT-like group for emphasis (Source: Steven E. Brown, Institute on Disability Culture, AdvocadoPress.org).

D’Antonio, M. (2004). The state boys rebellion. New York: Simon &Schuster.

About the boys deposited at Fernald, a state institution in Massachusetts. Fascinating. Excellent read. Tragic story. Looks at how a system skews peoples lives and then responds or doesn’t. I’m pleased to say that Commissioner Morrissey took matters into his own hands before Fred Boysce died and responded to Fred at least in part, telling Fred in writing that Fred was not a “moron.” This was important to Fred. The history of eugenics is in this book as well. It’s a great read. I couldn’t put it down. Recommendation and review by Cynthia Levine, Shrieber Clinical Services Corporation.

Davis, L. J. (2002). Bending over backwards: Disability, dismodernism &other difficult positions. New York: New York University.

This is a book of essays focusing on themes related to disability identity and Disability Studies. He notes the silence regarding disability identity versus other identities such as race, gender, or sexual orientation. He argues that instability of the disability category can be the beginning of a new way of thinking about all identity categories. As he states, “The dismodern era ushers in the concept that difference is what all of us have in common. That identity is not fixed but malleable.” Essays in the book illustrate the key role that Disability Studies can play in terms of cultural criticism and theory (Source: Center on Human Policy, Syracuse University).

Dougan, T., Isbell, L., &Vyas, P. (1979). We have been there: A guidebook for parents of people with mental retardation. Salt Lake City, UT: Dougan, Isbell, &Vyas Associates.

Over 50 first person accounts of what family and community life is like with a child or adult family member with a cognitive disability. Topics examined include family holidays, support services, schools, advocacy, siblings, emotional responses and creating a community of support. Many of these vignettes are filled with raw emotion, both of tenderness and anger (Source: Center for Disabilities Studies, University of Delaware).

Edwards, K. (2006). The memory keeper’s daughter. New York: Viking.

(Fiction) The story is about a family in the 1960’s who have twins &one of them has Down syndrome. The father a doctor asks his nurse to take the baby to an asylum but the nurse instead raises the child herself. The mother of the baby never is told. They story is not just about Down syndrome but some really nice things are woven in the story about expecting your child w/a disability can learn, starting support groups, fighting w/schools for inclusion, the IDEA, etc. It also shows how a family is torn apart by an unknown secret. Review and recommendation by Deborah Safarik.

Evans, S. (2004). Forgotten crimes: The holocaust and people with disabilities. Chicago: Ivan R. Dee Press.

A stark look at the policies and actions towards people with disabilities of the Third Reich during the 1930s. Such programs as “The Children’s Killing Program” and the “T4 Adult Euthanasia” program. This sometimes unremembered step toward the larger holocaust is documented in this readable, relatively short book (Source: Center for Disability Studies, University of Delaware).

Ferguson, P. (1994). Abandoned to their fate: Social policy and practice toward severely retarded people in America, 1820-1920. Philadelphia: Temple University.

A historical study of social policy and practice toward people labeled “idiots” or “severely retarded.” Ferguson examines the problem of “chronicity” and shows how people with the most severe disabilities have been and continue to be excluded from reform movements (Source: Center on Human Policy, Syracuse University).

Goode, D. (1994). A world without words: The social construction of children born deaf and blind. Philadelphia: Temple University.

During the Rubella Syndrome epidemic of the 1960s, many children were born deaf, blind, and mentally disabled. David Goode has devoted his life and career to understanding such people’s world, a world without words, but not, the author confirms, one without communication. This book is the result of his studies of two children with congenital deaf-blindness and mental retardation. Goode spent countless hours observing, teaching, and playing with Christina, who had been institutionalized since age six, and Bianca, who remained in the care of her parents. A World Without Words presents moving and convincing evidence that human beings both with and without formal language can understand and communicate with each other in many ways (Source: Adapted from Temple publisher book description, Temple.edu). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Greenberg, J. (1984). In this sign: The highly acclaimed novel of a family whose love and courage enable them to survive in the silent world of the deaf. New York: Henry Holt.

(Fiction) Abel and Janice Ryder begin their married life together with all the hopes and dreams of a young couple deeply in love. But before long they realize that their deafness stands as an immense barrier between them and a society that seems to work only for those who can hear. Inexperienced, ignorant, and bewildered, they leave the harsh environment of a school for the handicapped and enter the insensitive world of the hearing. Through years of debt and misunderstanding, hard and degrading work, the raising of a hearing daughter, common tragedies and joys, they learn that the remarkable tool of sign language enables them to survive and, indeed, to forge a love too powerful to be broken by the painful, extraordinary world into which they were born. In a story that spans four generations, we are witness to one family’s struggle to carve a place for itself out of the tides of wealth, war, and human strivings that have swept America in this century (Source: Publisher book description, Amazon.com).

Groce, N. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Cambridge, MA: Harvard University.

This ethno-historical study is an excellent portrayal of community life for deaf and hearing individuals of Martha’s Vineyard. The reader is presented with the history of how the deafness was brought to the island. The book allows the reader to view the typicality of the lives of Islanders who were deaf, typicality due to the community’s acceptance and ability to communicate with them. This well-researched book is a must, not only for people interested in the field of disabilities, but for anyone trying to struggle with inclusion into community life (Source: Center on Human Policy, Syracuse University).

Haddon, M. (2003). The curious incident of the dog in the night-time. New York: Doubleday.

(Fiction). Christopher Boone, the autistic 15-year-old narrator of this revelatory novel, relaxes by groaning and doing math problems in his head, eats red-but not yellow or brown-foods and screams when he is touched. Strange as he may seem, other people are far more of a conundrum to him, for he lacks the intuitive “theory of mind” by which most of us sense what’s going on in other people’s heads. When his neighbor’s poodle is killed and Christopher is falsely accused of the crime, he decides that he will take a page from Sherlock Holmes (one of his favorite characters) and track down the killer. As the mystery leads him to the secrets of his parents’ broken marriage and then into an odyssey to find his place in the world, he must fall back on deductive logic to navigate the emotional complexities of a social world that remains a closed book to him (Source: Excerpted from Publisher’s Weekly, Amazon.com).

Hershey, L. (various dates). Poems and tapes: On the lawn, In the way, Dreams of a different woman.

Denver, CO: Author. (Books of Poetry) and Hershey, L. The prostitutes of Nairobi, You get proud by practicing. Denver, CO: Author.

Hershey’s very powerful poems are about disability rights and lesbian sexuality. Her work includes essays in a variety of periodicals as well as these books and tapes Some of the poems can be read at http://www.cripcommentary.com/ and the booklets can be ordered at http://www.disabilitypride.com/products.php?id=6 (Source: Center on Human Policy, Syracuse University).

Johnson, M. (2003). Make them go away: Clint Eastwood, Christopher Reeve &the case against disability rights. Louisville, KY: Advocado.

This book analyzes individual, state, and federal reactions to the Americans with Disabilities Act of 1990 (ADA). Kicking it off with the media examples of Clint Eastwood and Christopher Reeve, Mary Johnson, founder and editor of The Disability Rag and Ragged Edge magazines, ties together individual experiences, watershed cases, popular culture, and media coverage to offer a cultural and historical analysis of disability rights before and after the ADA. With an honest tone she confronts an overwhelming prejudice against people with disabilities manifest by an inexcusable inaccessibility to the world in which we all live. She describes the current state of the ADA and challenges a society that welcomes people with disabilities in theory but prevents them from living full lives in practice. “A law cannot guarantee what a culture will not give” (Source: Center on Human Policy, Syracuse University).

Linneman, D. R. (2001). Idiots: Stories about mindedness and mental retardation. New York: Peter Lang.

Personal and powerful, this collection of field notes, letters, interviews, and insight challenges us all to rethink prevailing notions of intelligence. At the forefront of this book is the concept of mental retardation. Sharing his experiences and stories with four children, Linneman confronts this socially constructed concept, pointing out the limitations it imposes on children’s lives and on adults’ perception of children’s potential. While the feel of this book is anecdotal, it deals well with the questionable perpetuation of oppressive assumptions of incompetence and ideas of normalcy. Linneman deconstructs the concept of mental retardation and suggests focusing on the concept of mindedness rather than embracing unhelpful labels (Source: Center on Human Policy, Syracuse University).

Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University.

In this book, Simi Linton studies disability in relation to identity. She argues that Disability Studies must understand the meanings people make of variations in human behavior, appearance, and functioning, not simply acknowledge that these variations “exist.” Linton explores the divisions society constructs between those labeled disabled and those who are not. She avoids a medicalized discussion of disability and promotes the notion that people with disabilities need to claim their identities as disabled and as contributing members to the understanding of disability as a socio-political experience (Source: Center on Human Policy, Syracuse University).

Longmore, P. K. (2003). Why I burned my book and other essays on disability. Philadelphia: Temple University.

This book is composed of a series of essays on disability scholarship and advocacy by historian Paul Longmore. The book contains an introduction and four parts. Part One, Analyses and Reconstructions, includes essays on disability history, including the League of the Physically Handicapped and the Great Depression and Activism in the 1970s and Beyond. Part Two addresses portrayals of disability in television and films. Part Three focuses on ethics and advocacy, and specifically medical decision making and physician assisted suicide. Part Four, Protests and Forecasts, includes essays on disability culture and bioethicist Peter Singer as well as an autobiographical account of experiences that lad to the title of the book. Why I Burned My Book relates to the author’s public protest of discriminatory and unfair Social Security Administration policies that discourage disabled people from working. The book is extremely well-written and is must reading for anyone interested in Disability Studies (Source: Center on Human Policy, Syracuse University). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Lott, B. (1991). Jewel. New York: Washington Square Press.

(Fiction) In the backwoods of Mississippi, a land of honeysuckle and grapevine, Jewel and her husband, Leston, are truly blessed; they have five fine children. When Brenda Kay is born in 1943, Jewel gives thanks for a healthy baby, last-born and most welcome. Jewel is the story of how quickly a life can change; how, like lightning, an unforeseen event can set us on a course without reason or compass. In this story of a woman’s devotion to the child who is both her burden and God’s singular way of smiling on her, Bret Lott has created a mother-daughter relationship of matchless intensity and beauty, and one of the finest, most indomitable heroines in contemporary American fiction (Source: Book Description, Amazon.com). Recommended by Deanna Pedicone, Project Coordinator, Center for Disabilities Studies, University of Delaware.

Meyer, D. (Ed.). (1997). Views from our shoes growing up with a brother or sister with special needs. (C. Pillo, Illustrations). Bethesda, MD: Woodbine House.

“I can’t imagine having a plain old sister,” writes Ryan Clearwater, age ten, in one of the 45 essays in Views from Our Shoes. Ryan and the other boys and girls whose essays are featured in this collection range in age from four to eighteen. They share their experiences as the brother or sister of someone with a disability–the good and bad aspects, as well as many thoughtful observations; they are siblings of people with a variety of special needs, including autism, cerebral palsy, developmental delays, chronic health conditions, attention deficit disorder, hydrocephalus, visual and hearing impairments, Down and Tourette syndromes. These personal tales introduce siblings to others like them, perhaps for the first time, and allow them to compare experiences (Source: WoodbineHouse.com). Recommended by Deborah Safarik.

Mooney, J. and Cole, D. (2000). Learning outside the lines: Two ivy league students with learning disabilities and ADHD give you the tools for academic success and educational revolution. New York: Fireside.

The introduction (personal histories of the authors) is great reading for parents of LD or ADHD kids, and much of it has a humorous tone that makes it equally appropriate (and approachable) for discouraged adolescents. From the terror of weekly spelling tests to the few inspiring teachers and tutors the two encountered, the tales are equal parts entertaining, poignant, and encouraging to others who may well be experiencing quite similar events. There’s little discussion of what methods are right or wrong–ultimately, both authors take a fundamentally pragmatic view, and it’s “right” if it worked. Including information on how to recover lost class notebooks, how to make the most of a syllabus, and “The Seven Habits of Highly Disorganized People,” Learning Outside the Lines provides students with plenty of tools to further each reader’s personal idea of success (Source: Adapted from Jill Lightner, Amazon.com).

Morris, J. (1998). Pride against prejudice: Transforming attitudes to disabilities (Reprint ed.). North Pomfret, VT: Trafalgar Square.

Morris, a disabled feminist and activist, provides a feminist analysis to the study of the experiences of women with disabilities. Basing her arguments on the feminist principle that the personal is political, Morris eloquently challenges such issues as prejudice, abortion, and the notion that people with disabilities lead lives that are not worth living. She further discusses the history of people with disabilities in institutions and under the Nazi regime. Morris also examines the meaning of disability in Western culture and the meanings of history of segregation, dependence, and an emerging independence of people with disabilities. Pride Against Prejudice is a commentary on political activism and rights, and stresses the need to fight back against the prejudice, stereotypes, and oppression of an ableist culture (Source: Center on Human Policy, Syracuse University).

Perske, R. (1988). Circle of friends: People with disabilities and their friends enrich the lives of one another. Nashville, TN: Abingdon.

In this warm, sensitive collection, Robert and Martha Perske offer true stories and issues to ponder, concerning Circles of Friends — friendships between people with disabilities and so-called normals. They show how these circles cut across age groups, generations, and races, and how the hearts and world views of everyone can be enriched. The emphasis here is on pure and simple friendship (Source: Inclusion.com).

Picoult, J. (2004). My sister’s keeper: A novel. New York: Atria Books.

(Fiction) Anna is not sick, but she might as well be. By age thirteen, she has undergone countless surgeries, transfusions, and shots so that her older sister, Kate, can somehow fight the leukemia that has plagued her since childhood. The product of preimplantation genetic diagnosis, Anna was conceived as a bone marrow match for Kate — a life and a role that she has never challenged…until now. Like most teenagers, Anna is beginning to question who she truly is. But unlike most teenagers, she has always been defined in terms of her sister — and so Anna makes a decision that for most would be unthinkable, a decision that will tear her family apart and have perhaps fatal consequences for the sister she loves. (Source: Excerpted from Book Description, Amazon.com). Recommended by Ilka Riddle, Researcher, Center for Disabilities Studies, University of Delaware.

Rothman, D. J., &Rothman, S. M. (1984). The Willowbrook wars: A decade of struggle for social justice. New York: Harper &Row.

Documents events that occurred after court-ordered reforms of Willowbrook, an institution for people labeled mentally retarded. Rothman and Rothman followed events at Willowbrook from 1975 to 1982 in an attempt to understand social reform and its implications for people being deinstitutionalized. (Source: Center on Human Policy, Syracuse University).

Schive, K., &Klein, S. (Eds.) (2001). You will dream new dreams: Inspiring personal stories by parents of children with disabilities. New York: Kensington.

You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities includes pieces like “Hard Choices,” on the painful decision to place a brain-damaged child in a group home, and “Getting to Know My Son,” on a mother’s struggle to accept and love a child with Down’s syndrome. Compiled by clinical psychologist Stanley D. Klein and Kim Schive, a former editor of Exceptional Parent magazine, the book offers emotional support to disabled children’s families and should help educators and health-care professionals better understand these parents’ perspectives (Source: Excerpted from Publisher’s Weekly, Amazon.com).

Schwarz, P. (2006). From disability to possibility: The power of inclusive classrooms. Portsmouth, NH: Heinemann.

From Disability to Possibility leads the way presenting the specific kinds of teaching, classroom practices, and support approaches that will make this new model of possibility a reality. Drawing on the stories of learners, both with and without disabilities, as well as families and teachers, Patrick Schwarz shows you not only why many current special education frameworks don’t work, but also how they damage children, often for life. Then he demonstrates how possibility studies offers a meaningful, practical, and doable alternative to traditional special education practices both during the school years and after. This book illustrates, through stories of struggle and success, how creative, conscientious teachers can work with everyone involved in a student’s learning to make special education work (Source: Heinemann.com).

Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Times Books.

A well-written account of the disability rights movement by a well-known journalist who was covering social issues for the U.S. News &World Report at the time of the writing of this book. It is a product of the author’s research of five years which involved over 2,000 interviews with hundreds of disabled people. Written in People First language and based on the “minority model” approach, the book vividly and succinctly covers the disability rights movement primarily since the late 1960s onward leading to the passing of the Rehabilitation Act of 1973, the Education for All Handicapped Children Act (1975) and culminating in the passing of the ADA (Source: Center on Human Policy, Syracuse University). Recommended by Theresa Rebhorn, Parent of two young adults with disabilities, Assistant Director of Publications, Academy for Educational Development, National Dissemination Center for Children with Disabilities; Sue Swenson, Executive Director, The Arc of the United States; and Nancy Thaler, Senior Advisor and Consultant, Northwestern Management Services, Inc.

Shaw, L. (1994). Honor thy son. Nashville, TN: Abingdon.

(Fiction). You’ve watched “Life Goes On.” Are you ready for something a little different…like a mystery? Jack Ingraham deserts his family when his first child, J.J., is born with a disability. Years later J.J. is implicated in a murder, and Jack gets involved with his son for the first time. “As soon as I started reading, I could see J.J. in my mind. I love the suspense.”–Chris Burke, star of “Life Goes On.” “A masterful novel…a suspenseful thriller….”–Jack Klugman, actor. Veteran writer-producer Lou Shaw is best-known for his long-running TV hit, “Quincy”. He is the parent of a daughter with Down syndrome (Source: SpecialNeeds.com). Recommended by Deborah Safarik.

Siegel, B., &Silverstein, S.C. (2001). “What about me?”: Growing up with a developmentally disabled sibling. Cambridge, MA: Perseus.

How do families cope with the stressful aspects of raising a developmentally disabled child? There are over a million mentally impaired children in the United States, and another million children suffering from physical disorders or sensory handicaps. In What About Me: Growing Up with a Developmentally Disabled Sibling, Dr. Siegel, a highly regarded developmental psychologist, and Dr. Silverstein, a respected pediatrician, compassionately address the issue of living with a neurologically impaired sibling. They offer an incisive guide to the psyche of siblings who must assume difficult tasks and burdens, and approach their subject from a variety of perspectives, including a poignant first-person account by Dr. Silverstein, himself the older brother of an autistic sibling; a fascinating view from Dr. Siegel based on clinical interviews with over 1000 families of different ethnic and social and educational backgrounds and their approaches to handicaps; a compelling review of research on family factors and adjustments of the nonimpaired siblings; an analysis of family coping and defenses patterned on the Adult Children of Alcoholics model; and a helpful chapter for adult siblings on the legal aspects of becoming one’s “brother’s keeper” (Excerpted from Alibris.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University.

Smith, J. D. (1985). Minds made feeble: The myth and legacy of the Kallikaks. Austin, TX: PRO-ED.

Debunking Goddard’s infamous Kallikak study that purported to show the hereditary transmission of “feeblemindedness,” Smith traces members of the Kallikak family and demonstrates how facts were twisted by the eugenicists to prove their theories (Source: Center on Human Policy, Syracuse University).

Thomson, R. G. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University.

This book examines literary and cultural representations of physical disability, framing disability within a cultural and minority context rather than a medical one. The book examines American freak shows, as well as representations of disability in literature, including Harriet Beecher Stowe, Toni Morrison, and Audre Lorde. In a brief conclusion, the author summarizes her intent in this writing “to critique the politics of appearance that governs our interpretations of physical difference, to suggest that disability requires accommodation rather than compensation, and to shift our conception of disability from pathology to identity” (Source: Center on Human Policy, Syracuse University).

Trainer, M. (1991). Differences in common: Straight talk on mental retardation, Down syndrome, and life. Bethesda, MD: Woodbine House.

This collection of engaging essays goes a long way toward improving understanding of the effects and potential of Down Syndrome. Trainer, mother of a young adult with Down Syndrome and activist for the rights of the disabled, writes with perception and eloquence on the many issues which families of children with Down Syndrome must face: public attitudes, family adjustment, education, mainstreaming, adolescence, and independence. Particularly compelling is her report of the employment situation facing mentally retarded adults. Trainer makes a strong case for the worthwhile accomplishments which can be realized through the combination of a supportive family, funds for training, and a willing community (Source: Hilma F. Cooper, Cheltenham Twp . Libs., Pa., Library Journal, Amazon.com). Recommended by Deborah Safarik.

Trueman, T. (2000). Stuck in neutral. New York: Harper Collins.

(Fiction) While this book is fiction, and closer to young adult fiction at that, it reads as a first person account. Terry Trueman’s narrator is 14 year-old Shawn McDaniel who has cerebral palsy and does not speak. The story revolves around his father’s belief that he must kill Shawn to “put him out of his misery” despite the obviously positive relationships between Shawn and the rest of his family. The book delves in and out of family issues and quality of life questions. Most importantly, it stresses the importance of making the least dangerous assumption and offers one example of what could be going on when we just don’t know for sure (Source: Center on Human Policy, Syracuse University).

Wolfensberger, W. (1975). The origin and nature of our institutional models (Rev. ed.). Syracuse, NY: Human Policy Press.

This is an analysis of the development of and growth in institutions in the 19th and 20th centuries. The book examines institutionalization in terms of the ideas and philosophies of leaders in the field of mental retardation. This book contains the foundations for Wolfensberger’s influential writings about “normalization” (Source: Center on Human Policy, Syracuse University).

For Children

Mikaelsen, B. (1998). Petey. New York: Hyperion.

(Fiction) Born in 1920 with cerebral palsy and dismissed by ignorant doctors as feeble-minded, Petey Corbin spends all but the first two years of his long life institutionalized, his world barely larger than the walls of an asylum ward or, much later, nursing home. Within those walls, further imprisoned in an uncontrollable, atrophied body, he nonetheless experiences joy and love, sorrow, loss, and triumph as intensely as anyone on the outside. Able to communicate only with rudimentary sounds and facial expressions, he makes a series of friends through the years; as a very old man in a 1990s setting, he comes into contact with Trevor, a teenager who defends the old man against a trio of bullies, and remains a loyal companion through his final illness. This is actually two books in one, as with a midstream switch in point-of-view as the story becomes Trevor’s, focusing on his inner growth as he overcomes his initial disgust to become Petey’s friend. Mikaelsen portrays the places in which Petey is kept in (somewhat) less horrific terms than Kate Seago did in Matthew Unstrung (1998), and surrounds him with good-hearted people (even Petey’s parents are drawn sympathetically – they are plunged into poverty during his first two years by the bills his care entails). There are no accusations here, and despite some overly sentimentalized passages, the message comes through that every being deserves care, respect, and a chance to make a difference (Source: Kirkus Reviews, Amazon.com). Recommended by Janice Fitzgerald, Executive Director, Parent to Parent of New York State.

Stuve-Bodeen, S. (2005). The best worst brother. (C. Fremaux, Illustrations). Bethesda, MD: Woodbine House.

Emma used to be able to make Isaac laugh. He used to let her hold him without squirming. But no more. Now Isaac spits out his food and knocks down her blocks when Emma tries to play with him. Sometimes his behavior is downright embarrassing. Emma thinks Isaac would be more fun if he’d hurry up and learn some of the sign language she and her mom are trying to teach him. His slower pace is maddening at times! The Best Worst Brother is an endearing and realistic look at how a relationship evolves between a typically developing older sister and her younger brother with a developmental disability. It also shows how sign language can help a child that acquires speech more slowly. As Emma is pleased to discover, Isaac can learn to sign, he just learns when he’s ready (Source: WoodbineHouse.com). Recommended by Deborah Safarik.

Stuve-Bodeen, S. (1998). We’ll paint the octopus red. (P. DeVito, Illustrations). Bethesda, MD: Woodbine House.

Emma isn’t happy to learn that she will soon be a big sister. After talking with her father, however, she thinks of “at least a million things my new brother or sister could do with me,” and she eagerly awaits her sibling’s arrival. When Isaac is born, the family is confronted with the fact that he has Down Syndrome. Emma’s father explains that Isaac will still be able to do all of the things that Emma has thought of; he will just do them at a slower pace (K-3) (Source: Excerpted from Lisa Gangemi Krapp, Sousa Elementary School, Port Washington, NY, School Library Journal, Amazon.com). Recommended by Deborah Safarik.

Trueman, T. (2001). Stuck in neutral. New York: HarperTeen.

First-time novelist Trueman raises ethical issues about euthanasia through the relationship between 14-year-old Shawn McDaniel, who suffers from cerebral palsy, and his father. In a conversational tone, narrator Shawn explains that when he was born, a tiny blood vessel burst in his brain, leaving him unable to control any of his muscles. What no one knows is that Shawn is a “secret genius” who, while unable to communicate, remembers everything he has ever heard. His condition, which includes violent seizures, overwhelmed his father, who moved out when Shawn was three years old; the man later won a Pulitzer Prize for a poem based on his experiences as parent to a victim of C.P. Weaving together memories with present-day accounts, Shawn describes the highs and lows of his day-to-day life as well as his father’s increasing fascination with euthanasia and evidence that the man is working up the courage to personally “end [Shawn’s] pain.” The strength of the novel lies in the father-son dynamic; the delicate scenes between them carefully illustrate their mutual quest to understand each other (Source: Excerpted from Publisher’s Weekly, Amazon.com).

Documentaries on Film and Audio

Abandoned to their Fate (1997).

Drawing from scholarly records, institutional archives, original photography, and popular media, Philip M. Ferguson traces the historical origins of the prejudice and segregation endured by people with disabilities. This 30-minute film begins in the Middle Ages and ends with today’s move towards independent living and school and community inclusion. Organized in outline format with various types of media demonstrating ideas, this film is excellent for professional development, teacher training, and community awareness. For more information: http://www.pdassoc.com/attf.html

Autism is a World (2005).

Nominated for an Academy Award® in the short subject category. Autism is a World is from the perspective of a woman who lives with this often-misunderstood disorder. It takes the viewer into an extraordinary journey inside autism from 26-year-old Sue Rubin’s perspective. Sue explains what she feels, how she relates to others, her obsessions and why her behavior can be so very different. (Source: DisabilityTraining.com). For more information: http://www.stateart.com/productions/disabilities/autismisaworld/synopsis.asp

Beyond Affliction (1998).

Beyond Affliction: The Disability History Project is a four hour documentary radio series about the shared experience of people with disabilities and their families since the beginning of the 19th century. This Web site includes excerpts from the Shows as well as many of the primary source documents – extended interviews, images, and texts- from which the on-air programs were developed. (Source of description and site for excerpts on RealAudio: www.npr.org/programs/disability).

Breathing Lessons (1996).

The award-winning documentary, Breathing Lessons, addresses what life as a person with a disability is like from the perspective of Mark O’Brien. O’Brien, who is a poet and journalist, is paralyzed and uses an iron lung. Through his poetry and his insightful commentary, he reflects on such issues as the meaning of life, death, sex, relationships, creativity, and religion. For more information: http://www.pacificnews.org/marko/breathing-lessons.html

Brother’s Keeper (1992).

The lives of the Ward brothers, farmers in a rural community in upstate New York, are disrupted when the oldest brother, Bill, dies and his brother, Delbert, is accused of his murder. Brother’s Keeper focuses on the outpouring of support Delbert received from the community. The film chronicles the events surrounding Bill’s death and Delbert’s trial, including the townspeople’s efforts to raise funds for Delbert’s defense, their support of his innocence, and their refusal to see the Ward brothers through the lens of mental retardation. For more information: http://www.sid-ss.net/slcnys/thewards.htm

Burton Blatt: Revisiting the Vision (1995).

Through a series of clips from various conferences and talks, viewers are able to revisit the original and inspirational words of the late Burton Blatt. Blatt discusses institutional life, reactions to his and Fred Kaplan’s Christmas in Purgatory, the questionable notion of improving institutional life, and inclusive education. Blatt knew then what we struggle with today. He is remembered for stressing and achieving goals tied to values. His optimism, humor, and passion are central to this collection. This video is included in the media package, Revisiting the Vision: Selected Works of Burton Blatt, which also includes a CD-ROM containing historic photographs from Christmas in Purgatory and The Family Album. For more information: http://thechp.syr.edu/HumanPolicyPress/

The Color of Paradise (1999).

This Iranian film focuses on the relationships between an 8-year-old boy who is blind and his unaccepting father and caring grandmother. The boy returns home from his separate school for summer recess and viewers witness a very different boy, happy and alive, than the “bad lot” his father feels he’s been dealt. Through their interactions, the film covers family issues, notions of a “healthy” child, and views of disability. Visually stunning and emotionally challenging, this is a beautiful film on several levels. For more information: http://www.sonypictures.com/classics/colorofparadise/

The Community Imperative (2002).

In 1979, the Center on Human Policy, under the leadership of Burton Blatt, issued The Community Imperative, a declaration supporting the right of all people with disabilities to community living to counter opposition to deinstitutionalization and community inclusion by well-organized groups. Today, years later, inclusion remains controversial in some states and localities. At the same time, many people with disabilities are not receiving the supports they need to live successfully in the community. This video, provided in both VHS and DVD formats, is a documentary of a conference held in Oakland, California in 2002 to revisit the values underlying The Community Imperative. It features segments of presentations by and interviews with several California and national leaders. It also includes clips of historical leaders Burton Blatt, Gunnar Dybwad, and Ed Roberts. Narrated by Martin Sheen, the video recounts the history of community living and describes the challenges to achieving inclusion today. For more information: http://thechp.syr.edu/HumanPolicyPress/

Credo for Support (1996).

This powerful 5-minute video set to music (Ennio Morricone, The Mission soundtrack) offers a series of suggestions for people who care about and support someone with a disability. It prompts viewers to question the common perceptions of disability, professionalism, and support. Designed for use in presentations, in service, staff training, and orientation programs, this video can be a provocative catalyst for a dialogue on these issues. For more information: http://www.normemma.com/credwait.htm

Dance Me to My Song (1998).

This Australian film and Cannes selection was written by and stars Heather Rose, a woman with cerebral palsy who uses a computer to communicate. The film features Rose’s a powerful exploration of sexuality, friendship, and daily support issues. This is a strong film that deals with life issues and comes highly recommended. Disability is not demonized, defined as tragedy or deficiency, focused on as something to overcome, used to teach a lesson, or any of the other common misrepresentations in film. For more information: http://www.vertigoproductions.com.au/dance.html

Disability Identity and Culture (no date).

This bold and controversial selection in the Tools for Change series includes the experimental documentary Disability Culture Rap. Featuring Cheryl Marie Wade, this documentary takes a fresh look at what it means to be disabled in America. Through hundreds of images and a high-energy delivery, this is disability in our own words: who we say we are. Not the usual anthropological study of disabled people as specimens, we uncover the issues that set our souls on fire: freedom of choice, disability pride, independent living, the power of language and images, sexuality, community, and the right to live with dignity. For more information: http://www.selfadvocacy.org/Module%20Five.htm

Ed Roberts: His Words, His Vision (2003).

This video will draw inspiration as it features excerpts from a speech delivered by Ed Roberts, considered the “father” of independent living, at a 1981 independent living conference. His words are interspersed with contemporary photographs that depict the ongoing struggle of people throughout the world for the rights and independence modeled by this visionary leader. A perfect addition to any disability history library and its’ brief length facilitates use for class discussions and trainings (Source: Excerpted from DisabilityTraining.com).

Educating Peter (1992).

This Academy Award winning documentary highlights one third grade classroom’s year long efforts at inclusive education. It is a rare snapshot of classroom life, this one from Blacksburg, Virginia. While the title infers a focus on Peter, a student with Down syndrome, the film’s success is in its depiction of all that goes in to this school’s daily efforts at teaching all students. It will invariably raise many issues in the discussion of inclusive vs. “special” education and will be a good tool for future teachers to observe and critique. For more information: http://www.stateart.com/productions/disabilities/educatingpeter/

The Eighth Day (1996).

This Belgian film (French with English subtitles) is about the relationship forged between two men as they try to find happiness and love in their lives. In addition to many other qualities, one of the men has Down syndrome. Both lead actors shared the 1996 Best Actor prize at Cannes. Though the movie falls into several traps of representing disability, it is noteworthy that Pascal Duquenne has Down syndrome considering that many actors with disabilities are still denied roles and many able-bodied actors continue to present their interpretations of characters with disabilities. For more information: http://us.imdb.com/Details?0116581

The Execution of Wanda Jean (2003).

This documentary about the execution of an African-American lesbian who killed her lover explores the humanity of both the death penalty and the label of mental retardation. The claim by Wanda Jean’s lawyers that she is mentally retarded and therefore unfit to be executed raises all aspects of this ongoing discussion. This personal look at Death Row, the power of labels, and the finality of the death penalty is unforgettable. For more information: http://www.hbo.com/docs/programs/wanda/

Extreme Court Blues (2001).

Framed in the context of the Alabama v. Garrett Supreme Court decision, this video chronicles the backlash to this decision at the University of Illinois Chicago—the formation of the National Disabled Students Union (NDSU). The video is organized speeches given by rally and NDSU organizers; the speakers consistently make comparisons between disability issues and civil rights (comparing the reaction to the Garrett decision with the SNVCC and the Deaf President Now movement). Speakers also address issues such as tokenism, the history of institutionalization, eugenics, and sterilization, federal intervention in states’ rights (e.g., comparison between the Garrett decision and the Pierce veto of a federal land grant for Dix’s establishment of an asylum), the Independent Living movement, Not Dead Yet, and access to the general public education curriculum for students with disabilities.

Freaks (1932).

Tod Browning’s classic horror film about actual circus performers who exact revenge on a mendacious trapeze artist was shelved for years due to the controversy it created. Viewers were shocked that Browning’s actors actually had disabilities and refused to be subjected to such “grotesque figures.” The film deals well with notions of ableism, beauty, and relationships. This genre film forces viewers to confront issues of normality and humanity central to Disability Studies. For more information: http://freaks.cinephiles.net/

Gahanna Bill (2001).

An uncommon documentary about a middle-aged man. “Gahanna Bill” chronicles the life of Bill Withrow, a man with developmental disabilities. Living in the small suburban town of Gahanna, Ohio, Bill’s unique relationship with the town, its residents and its local high school are all captured in this emotionally powerful film. Told by the people who know him best, Bill’s fascinating story is an interesting look into how one man’s life can be an inspiration for so many, and how someone with a disability can overcome obstacles and make an impact in their everyday life. It is a classic example of how community inclusion benefits both people with disabilities and the community they live in (Source: DisabilityTraining.com).

Going to School – Ir a la Escuela (2001).

Going To School-Ir a la Escuela tells a memorable story about inclusion, special education, and empowering children with disabilities and their parents. The film shares the daily experiences of students with disabilities who attend middle and elementary schools in Los Angeles, revealing the determination of parents to see that their children receive a quality education. The issues of respect, civil rights, and education for all children are universal and poignantly conveyed. “Highly recommended” for both undergraduate and graduate level studies and for K-12 students, parents and educators. Commissioned by the Class Member Review Committee of the Chanda Smith Consent Decree. For more information: http://richardcohenfilms.com/GoingtoSchool.htm

Graduating Peter (2003).

This follow-up documentary to Educating Peter picks up with Peter in middle school and highlights his journey through his final year of high school. Peter finds himself in several different places than his classmates as he ages through the school system and receives a certificate of attendance upon graduation. This film will again raise many issues around inclusive education by showcasing one school’s interpretation of least restrictive environment. Key to this interpretation are definitions of disability and assumptions about potential that are central to disability studies. For more information: http://www.hbo.com/docs/programs/graduating_peter/

Hurry Tomorrow (1975).

Hurry Tomorrow is a powerful statement about the violation of human rights of people being treated involuntarily in a state psychiatric hospital in California in 1974. The film provides a visual record of the daily lives of patients being tied down with cuffs and straps, forcibly medicated with powerful tranquilizers, reducing them to helpless zombie like states. This cinema verité classic illustrates how individuals struggle to maintain their dignity in a dehumanized environment. The film withstood an effort to have it banned in California and instead served to help organize ex-patient groups around the country, and to initiate an investigation into patient deaths in state hospitals. For more information: http://richardcohenfilms.com/hurry_tomorrow.html

In the Land of the Deaf (1993).

This French film is a documentary about Deaf culture. It touches on many aspects and issues of Deaf culture in a way that other films have not. From an instructor in sign language to a voice teacher pushing her students to speak, from a family’s love to a woman’s wrongful institutionalization, and much more, this film covers much of the spectrum in a straightforward manner. For more information: http://www.alliancefrancaise.com.hk/events/fcp25/24.html

Johnny Got His Gun (1971).

This film based on the 1939 novel by Dalton Trumbo, written and directed by Trumbo, explores the consequences of war through the experiences of a man rendered blind, deaf, and immobile by bombing. While the hospital staff view him as helpless and worthless, he begins to piece his story together and viewers hearing his thoughts recognize the horrific dangers of assuming anyone is incompetent or without value. For more information: http://www.eufs.org.uk//films/johnny_got_his_gun.html

King Gimp (2000).

This Academy Award winning documentary featuring Dan Keplinger, an artist with cerebral palsy, is a must-see. It spans the thirteen years from his experiences in a separate “special” elementary school to his college life and the development of his artistic skills and goals. Dan’s sense of humor and determination emerge as themes, as well as his struggles with inaccessibility and the tendency (during college) to be a friend but not a boyfriend. The film deals well with the problems of assuming deficiency based on body type and physical appearance. For more information: http://www.kinggimp.com/flash.html

Liebe Perla (1999).

This powerful documentary highlights the friendship of two women while revisiting the Nazi’s treatment of people with disabilities. The women, a young disability advocate researching the treatment of little people during the Holocaust and an 80-year-old concentration camp survivor, are similar only in that they are both called short-statured. The film is in German and Hebrew with English subtitles. It is a provocative film that is best viewed with time for discussion afterwards. For more information: http://www.disabilityworld.org/07-08_01/arts/perla.shtml

Lou Brown Unplugged (2005).

Lou Brown tells stories that communicate important lessons accrued from over forty years of working on behalf of individuals with disabilities in classrooms, workplaces and courtrooms. The stories will make you laugh, cry and angry. Lou argues for the combination of integrated schooling, authentic assessment and instruction, and other rational instructional practices and individually meaningful experiences in real work settings (Source: Excerpted from DisabilityTraining.com).

The Mayor of Bedford Street (2002).

Filmmaker Elliott has been able to create a contemporary piece with Larry Selman as the centerpiece that considers the plight of adults with mental retardation who live in large urban centers. Her portrayal of Larry touches on many issues that most individuals living in the postinstitutional age must face. Larry, and many others like him, often live in near poverty with few friends and little to occupy them. Policymakers and all who view this film may better understand the realities of life today for adults with mental retardation. (Excerpted from P. Vietze and S. Holburn in Mental Retardation, 42(2))

Mayor of the West Side (2006).

On the verge of celebrating his Bar Mitzvah, mentally challenged 18-year-old Mark Puddington is buoyed by the constant, loving and unstinting support of his devoted mother, even as she worries about what he’ll do when she’s gone. An unsentimental look at the disabled, Mayor Of The West Side, which is Mark’s nickname in the neighborhood, asks whether there is such a thing as too much love and what happens when someone is pushed to finally make it on his own. Against the backdrop of his exceptionally moving religious ceremony, Mark’s family, including his father and brother, express their own concerns about his uncertain future (Source:http://www.flatbushpictures.com/mayor.html).

My Flesh and Blood (2003).

This 2003 Sundance Documentary Feature Audience Award winner follows a year in the life of a family of thirteen children with various disabilities headed by a single parent. Honest and touching, the film explores the definition of family while shattering many commonly held assumptions of disability as tragedy and deficiency. Central to this film is the idea that all of these kids are kids first. For more information: http://chaikenfilms.com/Frameset(films).html

Murderball (2005).

From the gyms of middle America to the Olympic arena in Athens, Greece, MURDERBALL tells the story of a group of world-class athletes unlike any ever shown on screen. In addition to smashing chairs, it will smash every stereotype you ever had about the disabled. It is a film about family, revenge, honor, sex (yes, they can) and the triumph of love over loss. But most of all, it is a film about standing up, even after your spirit – and your spine – has been crushed (Excerpted from http://www.murderballmovie.com/about.html).

No Apologies (1994).

This 28-minute video is by Wry Crips Disabled Women’s Theatre, which is a comedy troupe of women who are at the forefront of the disability culture movement in the San Francisco Bay area. It is comprised of disabled and able-bodied women of diverse racial, social, and class background. Wry Crips uses humor as a form of resistance. Their performances, comprised of poetry, readings, signing, performing skits, and reading narratives, all resist medical paradigms, social stereotypes, economic oppression, or individualist assumptions regarding disability issues. The women of Wry Crips embrace disability, seeing beauty and acceptance where able-bodied people only see difference and abnormality. For more information: http://www.lustydevil.com/fatgirl/wrycrips.html

On a Roll (2005).

Greg Smith and his family bare all in this unflinching portrait of a 65-pound man striving for the American Dream. Fueled by discrimination, Smith created “On A Roll Talk Radio on Life and Disabilities” from his power wheelchair in 1992. The father of three travels the globe in a new civil rights movement, but finds his own nation’s capital inaccessible – a minor challenge compared to living independently and having safe intimate relationships with facilitated sex. DVD includes interviews and special features (Source: DisabilityTraining.com).

Regular Lives (1988).

Regular Lives was produced in 1988 for PBS by the Academy Award winning directors Gerardine Wurzburg and Tom Goodwin; Syracuse University professor Douglas Biklen was its Executive Producer. The documentary explores inclusion of students with disabilities in elementary and secondary classes and includes interviews with teachers, a school principal, and parents. A concluding segment shows young adults with disabilities living on their own in their communities. Themes include the least dangerous assumption, school and community citizenship, and the value of diversity. For more information: http://teacher.shop.pbs.org/product/index.jsp?productId=1407524

Self-Advocacy: Freedom, Equality, and Justice for All (no date).

This award-winning video is part of the ACT series, Tools for Change. Narrated by writer, performer, and activist Cheryl Marie Wade, this program combines interviews, archival footage, and photographs to describe dominant historical models of disability and the roles self-advocates can and are now playing in determining their own lives. From the moral and medical models to the minority group model to the independent living and disability rights movements, Wade charts the course that has led to the present and offers the framework for self-advocates to continue to develop their voice and maintain the efforts towards inclusive societies. For more information: http://www.selfadvocacy.com/Module%20One.htm

Self Advocates Becoming Empowered (1997).

Self Advocates Becoming Empowered is about people with cognitive disabilities forming a national organization to work on issues they deem important, such as closing institutions, exercising their rights as citizens, supporting people to live in communities, and opposing injustice in the criminal justice system. Likening their movement to the civil rights movement of the 60s, many of the advocates speak out about the importance of their mission to people with disabilities. For more information: http://thechp.syr.edu/HumanPolicyPress/SABE_video.html

Selling Murder: The Killing Films of The Third Reich (1991).

This is a chilling Nazi propaganda film about the genocide of people with disabilities during the Second World War. Under what the Third Reich termed the “hereditary health law,” they convinced doctors that killing people with mental or physical disabilities was for their own good, and the good of the Aryan nation at large. The original film makers used shadows and poor lighting to make people seem grotesque, and played on the medical model of disability in terms of what is “abnormal” and “normal,” and even “human” and “not human.” This is a powerful film that should generate interesting discussions if used in a Disability Studies class. Please note: This film was aired on the Discovery Channel a few years ago, and we are not sure of its availability, but it is definitely worth a good search. For more information on people with disabilities during the Holocaust: http://www.ushmm.org/research/library/bibliography/handicapped/right.htm#film

Sound and Fury (2001).

This Academy Award nominee for Best Documentary follows one extended family on their journey as two sets of parents deal with the question of getting cochlear implants for their deaf children. This is an intense film that is sure to inspire excellent discussion about the nature of cures in general, but specifically around the value of the implants. The film educates viewers about Deaf culture and raises problematic societal issues around diversity, humanity, and membership that continue today. It is challenging, effective, and entertaining. For more information: http://www.pbs.org/wnet/soundandfury/

Taylor’s Campaign (1998).

Taylor’s Campaign is a humorous and insightful look at hardworking people living in cardboard lean-tos and dumpster diving for survival in Santa Monica, California. When local lawmakers threaten to suspend their civil rights in a drive to sweep the streets of “the homeless,” a destitute ex-truck driver who became disabled in an auto accident decides to run for city council on a platform of tolerance. This video has been described as “the best film on homelessness in this era…an invaluable resource for teaching about poverty.” Recommended for all age levels. For more information: http://richardcohenfilms.com/taylor’s.html

Titicut Follies (1967).

Although more than 30 years old, Titicut Follies remains a classic, depicting institutional life in a mental health facility. The 1967 Wiseman film is named for and centers around a talent show, the Titicut Follies, held for the inmates of the Bridgewater State Mental Hospital, in Massachusetts. While scenes from the talent show are disbursed throughout the film, the stark reality of daily life in the institution is revealed. There is little regard for the inmates’ human dignity; not only is what they have to say dismissed, but they are subjected to strip searches, lack of privacy, ridicule, and isolation. Titicut Follies is a grim film that reflects the barren existence of life in a mental hospital. For more information: http://www.zipporah.com/index.html and http://www.subcin.com/titicut.html

Tools for Building a Self-Advocacy Group (2000).

This instructional video presents specific steps and tools for building a self-advocacy group. Part of the Self-Advocacy Start-Up Toolkit developed by Self Advocates Becoming Empowered (SABE), it includes the philosophy of self-advocacy and challenges viewers to work to make it happen in their lives. The start-up process is broken into five sections: Starting Groups, Working on Issues, Self-Advocates and Self-Determination, Advisor Issues, and Materials on The Self-Advocacy Movement. For more information on the Toolkit: http://thechp.syr.edu/HumanPolicyPress/toolkit.html

Twitch and Shout (1995).

This is a must-see documentary about living with Tourette Syndrome (TS) made by photojournalist Lowell Handler who has TS himself. The film explores what TS is, what it means to live with it, and people’s reactions to the tics that are its physical manifestation. TS is reclaimed and reframed in terms of life energy. Handler calls out notions of normality as he weaves together the immediately appealing stories of four successful adults. The film should challenge viewers to rethink notions of human value and individual differences. For more information http://www.blinddogfilms.com/twitchandshout/

Vital Signs: Crip Culture Talks Back (1997).

In the documentary Vital Signs: Crip Culture Talks Back, participants in a national Disability and the Arts conference explore the politics of disability through their performances, which include such texts as art, fiction, poetry, stand-up comedy, drama, and personal stories. It features such disability rights activists as Cheryl Marie Wade, Mary Duffy, and Harlan Hahn, and also includes group debates and behind-the-scenes conversations. The film also addresses the culture of disability and the shared struggle people with disability have in gaining access to influential cultural institutions. For more information: http://www.fanlight.com/catalog/films/230_vs.shtml

What Does Normal Mean? (2006).

“What Does Normal Mean” is a compelling documentary film about the “inclusion” of children with disabilities in public schools. The film follows seven children – elementary to high-schoolers – with a broad range of disabilities, over an academic year. Produced by multiple Emmy award winning filmmakers, the children’s struggles and triumphs give dramatically clear testimony to the value of equal educational opportunities for all. The documentary is constructed so that each child’s story can be viewed and discussed as a chapter, generating many different teaching and learning issues. Excellent for college students, community programs, advocacy or parent groups, or anyone that wants to see and “feel” how an inclusive change in our schools has made us more aware and thoughtful about potential, difference and about what normal means (Source: DisabilityTraining.com)

When Billy Broke his Head… And Other Tales of Wonder (1995).

First premiering on PBS in 1995, this film by Billy Golfus explores the concept of disability rights and takes a close look at the disability rights movement and those involved. Golfus, who has a traumatic brain injury, intertwines his story with the experiences of others who are struggling for their rights. This is a must see. For more information: http://www.fanlight.com/catalog/films/136_wbbhh.shtml

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