LIVING THROUGH HANSENS DISEASE
In 1873, a Norwegian medical doctor, Dr. Gerhard Armauer Hansen, discovered Mycobacterium leprae. M. leprae is a bacillus very much like tuberculosis. Its toxicity is very weak and it is only very mildly contagious. This is explained by the fact that, even today. M laprae cannot be cultivated in vitro, despite many scientific trials. There is no record in history of an epidemic of Hansen’s Disease (HD) at any given time. HD is a chronic disease affecting the peripheral nerves. After some time, if left untreated, our faces and limbs can be affected. Sensory loss in our hands and feet can result in the disabilities traditionally associated with the disease.
I was diagnosed with HD some 56 years ago, the year when the War of the Pacific began (1941). My doctor told that I would be cured in about a year, so I entered the Zensho-en National HD Sanatorium. During the war time there was no medicine or food in the sanatoria. Life was harsh and miserable. It was not a medical institution, but was more like a jail. My disease was in an early stage and I did not have any visible symptom. As I had received a militaristic education, and had become a “militant juvenile”, I thought that “it is an honour for a citizen to sacrifice one’s life for the sake of His Imperial Majesty.” I worked strenuously because sanatorium life meant that you must support yourself. Eventually, this harsh work took a toll on me and my health deteriorated.
On August 16, 1945, Japan was defeated in World Was II, but I couldn’t admit the fact. It meant that what ever I had believed and trusted in was totally false. I did not know what to believe. I felt desperate and drank heavily in the black markets in Shinjuku and Ikebukuro, having sneaked out of the sanatorium at night. I became what you call delinquent, with repeated misconduct and basically lead a dissipated life. Then I had a relapse.
Just at that time, Promin, the miracle drug, appeared. The cost of the drug was prohibitive for patients and the Government and Government had no budget for this medicine. Consequently, the patients organized a “give us Promin” movement, but we could not go out of the sanatoria to appeal to the outside world. My health continued to deteriorate and my worried mother sold the family property to send me money for Promin. I was so desperate to get cured and leave the sanatorium that I must have taken a higher doses than my body could tolerate. My limbs lost sensations. My hands cannot feel fire nor water. When I meet children or students at the HD Museum, people come and shake hands with me, saying, “I want to get courage from you Mr. Hirasawa.” To my sorrow, I cannot feel the warmth of their kind cheer. I cannot physically perceive their encouragement. Of course, in my mind I have fully appreciated the warmth of their words.
Now I would like to briefly like to explain to you about the Leprosy Prevention law. In a nut shell, what the law aimed to do was to confine all HD patients in sanatoria and wait for them to die. Absolute isolation or quarantine was its goal. Patients were not allowed to leave the sanatoria, even if their disease was cured. Under Article 4 of this Law, when doctors found new patients, they had to report to the prefectural authority. I was born in Ibaraki Prefecture, so my name, Yasuji Hirasawa, is kept in a register in my home town, in the Ibarakai Prefectural Office, for as long as I live. I did not commit any crime, but my name continues to be registered.
After a patient was registered, he or she was sent to an HD sanatorium. If some patients did not obey the order, they could be taken in handcuffs. Some were hauled off in their working clothes. Some pleaded for one week’s respite, for example if a man’s wife was about to give birth, but the police uprooted him but took him to sanatorium. Not a small number of my friends experienced these things when they were admitted.
The Patient’s families had to undergo difficulties. After the patient was taken away, their houses or shops were disinfected and the shops were ordered to close down. Inside the sanatoria, patients had to live deprived of their freedom. They were not allowed to leave. Those who did not obey the order were punished by the director of the sanatorium and confined in a jail-like cell inside the sanatorium. What ever money you had was taken away immediately after you entered the sanatorium. This was to prevent us from escaping. There were numerous other incidents that may be hard to believe in today’s world. Our life under the Leprosy Prevention Law was almost like that of a criminal in a jail, though it might have been slightly better. That was the reality that lasted until at least the 1950’s.
Why Do I Continue To Serve As Interpreter At The Museum?
When we began our movement demanding the revision of the Leprosy Prevention law, it was for us a desperate quest for more humanity in our life. The new Japanese constitution was the result of much bloodshed, but for us in HD sanatoria it was nothing but a pie in the sky. The war ended, but the life inside the sanatoria remained unchanged. Article 25 of the new constitution mentioned “the right to live, but our life was lived no better than at the poverty level and the day –today maintenance of our sanatoria was sustained by the compulsory labor of the patients. Through the patient’s movement, we challenged these situations one by one. It is no exaggeration to say that the history of leprosy and its sufferers in Japan was built upon the sweat and blood of the patients. As I said earlier, I was strongly influenced by the military education I received in my childhood, but gradually I came to realize the mistake and chose to immerse myself into the patient’s movement foe justice.
In 1950, I got married inside the sanatorium. I had given up my dream to return to society. As a prerequisite for marriage, I had to undergo sterilization. Under the Eugenic Protection Law, HD patients were not allowed to have children. This inhumanity was performed in the name of the law. Consequently, I do not have any children or grandchildren
You may not believe this, but until the 1960’s, it was the patients themselves who treated and nursed their fellow patients. Until the repeal of the Leprosy Prevention law, HD treatment was only given at the national sanatoria. Nowhere else it was possible to receive medical treatment. Today, because of the repeal of the Law, we have found freedom in terms of our medical treatment. But, even today, we sometimes hear staff at the general hospital say, “We don’t mind if you come to our hospital, but if other patients find out, they may decide not to come to us.” I suspect that people with HIV might have similar experiences.
The Leprosy Prevention law had deprived us of the right to receive medical treatment, as well as many other human rights. This Law was first enacted in 1907 and had two major revisions, in 1931 and 1953. Over the years, we always demanded revision or repeal, but among the residents, not a small number felt that: “It is because of the Leprosy Prevention law that we have the guarantee of life. You should not repeal it so easily,” “Mr. Hirasawa, what are you going to do with our lives if you repeal the Law?” There were difficulties within our organization in terms of having a united objective. You will recall that Government established the notorious “AIDS Prevention Law”, which was based upon the “Leprosy Prevention law.” I believe the delay in the repeal of the Leprosy Prevention law led to the creation of the AIDS Prevention law. I feel I owe an apology to Mr. Kawada and all those who are infected by HIV and their families.
Today we find no more that ten new HD patients in Japan each year. There used to be nearly 10,000 residents in all the 13 Government-run and two privately-run HD sanatoria in Japan but, as of April 2004, the number is only 3,522. Every year some 200 people die of old age and other complications. It is believed that HD in Japan will be over sometime in the early part of the 21st century.
You may wonder, then, why we have opened an HD Museum and appealing to the public that the “mistakes of HD should not be repeated.” I want you to turn your eyes to the people living with HIV, people with mental challenges, patients suffering from incurable diseases, and the elderly in this country. Are they being treated with due respect as human beings? Is their human dignity duly recognized in this society? The dignity of our life, our humanity, should be recognized under any circumstances. We cannot simply retreat just because our own problems have been solved. Also, if you look at the situation in the developing countries, especially in Asia, there are still many millions of people living under very difficult conditions due to HD and its consequences, including prejudice and discrimination.
Every year, nearly 700,000 are newly diagnosed with HD. We want to build solidarity with these people around the world and, through our efforts regarding the issues associated with HD, we believe we can contribute towards world peace.
Lets Us Not Repeat Our Past mistakes
Once again, I want to draw your attention to my 56 years of bitter life as a person with HD. My mother never stopped visiting me for 55 years, even though she was disowned by her own family because my father and myself had developed HD. I have been feeling very envious of Mr. Kawada, because his mother, who gave birth to him and who loves him so dearly, is always at his side in his fight. I am all alone. Even today, I cannot return to my home. There is no place on this earth that refuses me to visit. I can visit anywhere in this country or overseas. The only place I cannot visit is my home and my hometown. This is the reality of HD.
In December, 1995, my mother passed away at the age of 92. She usually walked to my sanatorium when she came to see me. The bus fare from the Musashi-Kiyose station to my sanatorium was only ten cents, but walked to save that amount so that she could bring goodies to her Yasuji. This is how mothers are, so tender and so loving. I was not invited to her funeral. My brother was in charge of the funeral service. He is a station master at one of the major National Railway stations and, as such, her funeral was a large affair with flowers of condolence sent from the Transport Minister and master of the Tokyo Station. It was a well talked about funeral in a small town. They showed me photos, but I wondered if my mother was happy with that funeral. If I had been able to sit at her bedside, holding her hands, and if I had been at the funeral, she would have felt relieved and happier. I felt mortified and felt a lump in my throat.
HD has become a curable disease. “Leprosy Prevention law” has been repealed. But the prejudice and discrimination against HD die hard. I am the eldest of five brothers and sisters, but there is no home that welcomes me. People affected by HD have their birth places, but do not have their homes. This is the reality. The history of HD is a history full of this kind of things.
I appeal to you all not to repeat the mistakes of society, of the Government and of the medical world. I do not want anyone in the world today or in the future to experience the hardships that we faced. This is the main reason why I take these opportunities to talk and speak publicly as someone who has recovered from HD, using my own name.
Every year I visit Aoba Primary school, a local primary school near Tama Zensho-en sanatorium. Children remember me and send me cheers If I meet them in town, they will say, “Where are you going today Mr. Hirasawa?” This would have been beyond our imagination only a few years ago.
Human beings are really wonderful aren’t we? If you live seriously and earnestly, you are rewarded with this joy. If I can convey this to you through my talk, I will be really happy.