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.

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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

Read more at Disability Studies : Information and Resources

Recommended Books About the Disability Experience

Adventures in the Mainstream: Coming of Age with Down Syndrome. (2005). Greg Palmer. 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.(Amazon.com)

After the Tears: Parents Talk About Raising a Child With a Disability. (1987). Robin Simons. In parenting a child with a disability you face a major choice. You can believe that your child’s condition is a death blow 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. This is the story of many such parents – parents who have struggled, learned and grown in the years since their children were born. They share their stories with you to give you the benefit of their experiences, to let you know you’re not alone, and to offer you encouragement in growing with and loving your child. (Wyoming Parent Information Center)

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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.

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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.

Read more at Information Package on Disability Studies

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.

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Below are summaries of the recent publications concerning the Asian and Pacific Decade and Decade-related issues.
Most of the publications are available on-line. You can order print copies of these publications by sending us an e-mail escap-esid-psis@un.org, and listing the publications you would like to obtain.

pathfinder

Pathfinders: Toward Full Participation and Equality of Persons with Disabilities in the ESCAP Region: [ST/ESCAP/2170] 2001
ESCAP has issued this publication to share widely some case studies of good practice which reflect an important aspect of the achievements of the Asian and Pacific Decade of Disabled Persons. The case studies describe the impact and improvement in the quality of the daily life of individual persons with disabilities. They provide detailed description of the challenges faced, the solutions found and the lessons learned in the implementation of the Agenda for Action for the Asian and Pacific Decade. The case studies were undertaken by governmental and non-governmental agencies in the ESCAP region.
[View HTML] : [Download PDF, 97pp, 1.9 Mbytes]

Asian and Pacific

Asian and Pacific Decade of Disabled Persons: mid-point ~ country perspectives: [ST/ESCAP/2014] 1999
The present publication is a companion to Asian and Pacific of Decade Disabled Persons: mid-point ~ regional perspectives on multisectoral collaboration and national coordination (ST/ESCAP/2004). This volume contains country and area perspectives concerning the implementation of the Agenda for Action for the Asian and Pacific Decade of Disabled Persons up to 1997, the mid-point of the Asian and Pacific Decade of Disabled Persons, 1993-2002. They are drawn from the papers presented to the Meeting of Senior Officials to Mark the Mid-point of the Asian and Pacific Decade of Disabled Persons held in Seoul from 26 to 29 September 1997.
Download (pdf, 301pp, 822 kbytes)

Asian and Pacific2

Asian and Pacific Decade of Disabled Persons: mid-point ~ regional perspecties on multisectoral collaboration and national coordination: [ST/ESCAP/2004] 1999
The present volume presents the recommendations that emerged from the four regional meetings: I) the Intercountry Seminar on Multisectoral Collaborative Action for People with Disabilities in Kuala Lumpur 1996, II) the India-China seminar on multisectoral collaborative action for people with disabilities in New Delhi 1997, III) the Meeting of Senior Officials to Mark the Mid-point of the Asian and Pacific Decade of Disabled Persons in Seoul 1997, IV) the Regional Conference on Issues and Strategies concerning National Coordination Committees on Disability (NCCDs) in Manila 1997. Also included are insights and background documentation related to the meetings.
Download (pdf, 142pp, 518 kbytes)

Promotion of Non-handicapping environment

Promotion of Non-handicapping Environments for Disabled Persons: pilot projects in three cities: [ST/ESCAP/2005] 1999
ESCAP has issued this publication in order to share more widely the experiences generated in the development and implementation of pilot projects on the promotion of non-handicapping environments in ESCAP developing and least developed countries and areas. This publication is directed mainly at government agencies and institutions in the ESCAP region that have a role in influencing the shape of the built environment. It may also serve as a useful reference for organizations and groups in civil society that are concerned with the right of persons with disabilities to freedom of movement. Available on-line:
[PDF Index Page ]

Self-help

 Self-Help Organizations of Disabled Persons: [ST/ESCAP/1087] 1991
The publication has been prepared to promote and support the self-help movement of people with disabilities in Asia and the Pacific. It is hoped that through such self-help initiatives to establish independent and productive lives as are outlined in this publication, people with disabilities may contribute directly to the fulfilment of the goals of full participation and equality in social life and development. These goal are contained in the World Programme of Action concerning Disabled Persons, adopted by the General Assembly on 3 December 1982, by resolution 37/52.
Available on-line: [ PDF Index Page ]

Hidden sisters

HIDDEN SISTERS: Women and Girls with Disabilities in the Asian and Pacific Region, [ST/ESCAP/1548] 1995
Despite the significant number of women and girls with disabilities, their concerns remain unknown and their rights overlooked. This publications covers the problems of discrimination and the main issues concerning women and girls with disabilities. An overall strategy for action which will meet the needs of women with disabilities as well as empower them to seek move opportunities, greater access to resources and more equal participation in decision-making is discussed. Available on-line:
Available online: [ Html format ] [ Text format ]

Asian and Pacific3

Asian and Pacific Decade of Disabled Persons: Action Targets Gender Dimensions, [ST/ESCAP/1669]
This set contains information on the targets and gender dimensions for the national and subnational implementation of the Agenda for Action for the Asian and Pacific Decade of Disabled Persons. It includes the Report of the Meeting to Review the Progress of the Asian and Pacific Decade of Disabled Persons, 1993-2002, Bangkok, 26-30 June 1995, progress in the implementation of the Agenda for Action for the Asian and Pacific Decade of Disabled Persons, 1993-2002; implementation of the Agenda for Action for the Asian and Pacific Decade of Disabled Persons: Targets by Area (including gender dimensions); and implementation of the Agenda for Action for the Asian and Pacific Decade of Disabled Persons: Targets by Year.
Available on-line: [HTML format]

Asian and Pacific4.jpg

Asian and Pacific Decade of Disabled Persons, 1993 – 2002: Mandates for Action, [ST/ESCAP/1433] 1994
This publication contains information on the mandates for the Asian and Pacific Decade of Disabled Person. Included are the Decade Resolution, Proclamation and the Agenda for Action. The Decade Agenda for Action is a regional blueprint for action. It consists of 12 major policy areas whose implementation are crucial to the fulfilment of the Decade goal of full participation and equality for people with disabilities. The areas covered are: national coordination, legislation, information, public awareness, accessibility and communication, education, training and employment, prevention of causes of disabilities, rehabilitation services, assistive devices, self-help organizations and regional cooperation.
Available on-line [HTML format]

Legistation

Legislation on Equal Opportunities and Full Participation in Development for Disabled Persons: A Regional Review
Legislation can be a powerful means of facilitating the full participation and equality of people with disabilities in society. This publication contains a regional review of legislation concerning the equal opportunities for the full participation of persons with disabilities. It is primarily intended as a reference document for policy makers and their NGO partners concerned with national action.
Available on-line: [TXT format]

Legistation2

Legislation on Equal Opportunities and Full Participation in Development for Disabled Persons: Examples from the ESCAP Region, [ST/ESCAP/1651] 1997
This publication, which is a companion to the above-mentioned publication (ST/ESCAP/1651), has been issued in response to requests for examples of legislation from the ESCAP region. The publication is primarily intended as a reference document to facilitate national-level efforts with respect to the fulfillment of the legislation targets of the Agenda for Action for the Asian and Pacific Decade of Disabled Persons, and the implementation of the United Nations Standard Rules for the Equalization of Opportunities for Persons with Disabilities.
Available on-line [HTML format]

Promotions2

Promotion of Non-Handicapping Physical Environments for Disabled Persons: Guidelines, [ST/ESCAP/1492] 1995
Barrier-free structures in the built environment enable people with disabilities to participate in mainstream society. These guidelines contain recommendations on planning and building design, public awareness initiatives, access policy provisions and legislation to promote barrier-free environments. The guidelines are intended to serve as a reference for decision-makers and programme personnel working on human settlement issues, especially those in architecture, research and training, urban planning and management, and the elimination of physical barriers to disabled person freedom of movement.
Available on-line [HTML format]

Promotions3

Promotion of Non-Handicapping Physical Environments for Disabled Persons: Case-studies , [ST/ESCAP/1510] 1995
This publication, which is a companion to the above-mentioned publication, contains a regional overview of access legislation in the ESCAP region and case studies on access legislation and policy provisions. It also addresses the valuable role of education systems, associations of professionals and non-government organizations in improving accessibility for disabled and older persons.
Available on-line [HTML format]

Production

Production and Distribution of Assistive Devices for People with Disabilities, [ST/ESCAP/1774] 1997
In developing countries of the Asian and Pacific region, relatively few people have access to assistive devices which are essential for freedom of movement in daily life. This publication addresses the availability, within the region, of culturally-appropriate, high-quality assistive devices. The publication consists of 5 volumes: (1) Part I is a regional review of production and distribution of assistive devices in Asian and Pacific developing countries; (2) Part II contains country papers, most of which were presented at the Technical Workshop on the Indigenous Production and Distribution of Assistive Devices held in Madras, India, in September 1995. The three supplements are: (1) a directory of assistive devices produced in Asian and Pacific developing countries; (2) a listing of international mandates pertaining to assistive devices and; (3) technical specifications and information pertaining to assistive devices of relevance for small workshops and organizations concerned with community-based rehabilitation. Available on-line [HTML format]

Management

Management of Self-help Organizations of People with Disabilities, [ST/ESCAP/1849] 1997
This publication is based on the discussions, information and experiences shared by the participants of a series of workshops on the management of self-help organizations of people with disabilities organized by ESCAP. The publication outlines common management issues affecting self-help organizations in Asia and the Pacific. It presents a range of approaches that can serve as a useful reference for strengthening self-help organizations of people with disabilities. Available on-line:
[ Html format ] [ Text format ]

Understanding

Understanding Community-Based Rehabilitation
This publication presents an understanding of community based-rehabilitation (CBR) in terms of a multi-sectoral approach, programme criteria, components of CBR programmes and the roles of different sectors for the development of CBR. The publication was prepared by the Working Group on CBR of the Subcommittee on Disability-related Concerns under the Regional Inter-agency Committee for Asia and the Pacific (RICAP).
Available on-line [HTML format]