Pittsburgh 時代(2004―2006)


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To All Brothers and Sisters Fighting for Disability Rights:

Nashville in March of 2006; I was very excited and happy the whole time I spent time with all of you.  It brought back memories of advocating for disability rights many years ago in Japan.  Around 30 years ago in Japan, when people saw a person with a disability in public, the typical thought that crossed their mind was ‘which institution (nursing home) did he/she run away from?’ It was so rare to see anybody with disabilities in public so when they did go out they were the focus of everyone’s eyes with the thought; “WHAT are they doing in the PUBLIC?”  These people were all supposed to be hidden away in special institutions and not displayed in public.  Then there was an incident.  A man with cerebral palsy was handing out his poetry to people passing by on a street with other singers and performers.  A policeman came running saying “who is responsible for this?  This is public place, not a freak show.”  It did not occur to the policeman that the poet with CP was not any stranger than the other street performers.  In Japan, many of institutions/nursing homes had metal bars in the windows like a jail.  I was reminded of this when I heard the words “We would rather to go to jail than to die in a nursing home”.  The Japanese institutions (nursing homes) were the same as jails or concentration camps for people with disabilities.

Japan In April of 1976, a member of an activist CP group (that I was part of) who was newly institutionalized by his relatives killed himself by throwing himself in front of a train.  The suicide was a result of the depression and hopelessness of his isolated situation.  He had confessed recently to other members about being a sole target of abuse and being ignored by everybody in the institution from the beginning.

Getting this sad news, most of members got angry at the institution for the inhumane treatment of him that led to his death.  They also appealed to the system itself that was working against freedom and independence among people with disabilities. With words like; “We will get our real life out of an Institution.” “Our life is not in special Institution.”  Some of the people with more severe disabilities went after the officers and directors of the institution but they ran away leaving the protesters inside the office.  This was the beginning of a 24 hour “Sit-In” protest.  It was the first time in Japanese history that the Special Police Force was ordered to move people with disabilities.

Inaccessible Public Transportation:

We (the Japanese CP group I was member of) also protested for public transportation for people with disabilities around that time.  It was very hard for people with disabilities to use public transportation then.  If someone with a wheelchair tried to ride in a bus, the driver refused to start the bus.

In 1977, to change the discrimination against people with disabilities, 120 people with CP gathered for a protest at the main bus station in Kawasaki city.  As a result, a total of 28 buses were blocked by us at the station.  When the bus company made a temporary bus terminal so they could avoid the protesters and serve their regular customers, we went to the new buses to ride so they could not ignore us.

We were careful to have the non-disabled volunteers leave the busses and the station after helping the members of the CP group on to the buses. Back in those days when there were protests for people with disabilities, people including police and government all tend to think that; “people with CP were not intelligent enough to make any protest plans and execute them. Therefore somebody else like non disabled volunteers around them had to be controlling the people with CP.” We wanted to make it clear that we the people with CP were the ones planning and executing the protests against the bus company and no one was controlling us.  Kawasaki city government decided to order Special Force Police to clear us off the buses that night.  The hundreds of Special Force Police full armed by duralumin shields, protectors and clubs surrounded the protestors’ buses illuminated by many projectors.  They tried to get into buses and of course it was easy for them. And three or four Special Force policeman for each CP member dragged us away from the buses.  Some CP members were too excited and fought with the police braking the steering wheel or windows.

We protested against many segregations and discrimination policies that target disability rights rather than the rights of institutions and transportation systems. Every time we protested, the Special Force Police was ordered to clear us by force.  Police tried to find out some one without disability who instigated us to do so, because they didn’t think an individual with CP was worthy to arrest as a leader of these protests.  Maybe they could not imagine that people with CP can plan, prepare, organize, and to do something like a protest by themselves.  They searched for the clues through my home, and all they found suggested me as a leader.  They gave up prosecuting “someone” without CP for the protest, everything being held in evidence was eventually returned to my home.


Today, most of the members of the CP group suffer from physical deteriorations and burnout effect, especially damage to cervical vertebrae.  There are members who used to be able to walk and even assisted other members with CP, but now cannot even sit and are having problems with bladder sensory.  Other members who were able to sit in the wheelchairs by themselves 30 years ago now need straps to stay in the wheelchairs.  If you consider the growing health problems among adults with CP, there are too few professionals studying these problems compared to the number of studies on children with CP.

I believe it is time to bring attention to this serious health issue ourselves.  My friends from the Japanese CP group and I are conducting a research project to understand and find a solution to the deterioration problems with adults with CP in conjunction with a similar study being conducted by my husband who has a PhD in physical therapy.  We are also hoping this will inspire more researchers to address this issue and enlighten people with CP themselves to pay more attention to their body and its well-being.  We collected data by interviewing informants about the changes in their bodies through their whole life such as what activities of daily living they are able to perform compared to which ones they could do when they were younger and when and what kind of physical problems they started to have (like back pain, neck pain, numbness of nay body part, and loss of balance…etc ), what were they doing when changes happened to see the possible cause, and what did they do to solve or reduce the physical problems they had…etc.).  I believe that to achieve independence and freedom of people with disabilities throughout their whole life, it very important to pay attention to one’s body and know its limit.  We should live our life with our own rhythm instead of try and catch up with rest of society.  Even people without disabilities are having physical problems due to the extended lifespan modern medicine has provided.

K Nelson (NIH/HINDS) stated there is no tool to show effectiveness preventing birth asphyxia which was long time believed as main cause of CP and has recently realized a minor factor at the International Cerebral Palsy Conference.  Her statement seams to suggest consequently that CP will never end.  The fact that there will be more people born with CP in the future shows how important our study is to prevent and solve physical deteriorations of the health of adults with CP.  From the study we could learn and teach children to understand and listen to their bodies more effectively.  This could help them avoid damaging their body and losing abilities through overuse or physiological exhaustion.

We also did a presentation about our study and findings at AACPDM last year.  Some of the audience in the conference said it did not make any sense not to have any actual people with CP attending the conference in the first place.  I believe even in those academic fields we as people with CP should be more active to solve our health problems.  Also at the International Cerebral Palsy Conference in Finland, we stressed the importance of successful mobility transition (e.g. utilizing power mobility in early stage of progressive functional limitation) from a life long perspective among people with CP.  We will also present at the International Congress on CP ”New Advances in Treatment of CP” regarding constant incidence of adult functional deterioration regardless of pediatric interventions.

When we presented our study in both Norway at the World Congress of Rehabilitation International 2004, and Finland at the International Cerebral Palsy Conference, several Scandinavian people with CP commented that the deterioration issues are not only a Japanese problem.  We realized there are similar severe physical problems with adults with CP from overuse of their bodies in other countries beside Japan.  Until that point we only had data from Japan and could have been led to believe these problems only apply to Japan and dismiss the fact our research could apply to other countries as well.

For our study to be more useful to not only to Japanese with CP but people with CP from other countries, we would like to start collecting data from non-Japanese adults with CP.

I am hoping to find as many people as possible who are interested in our work and want to help solve the deterioration problems experienced by adults with CP by joining our study.




この投稿文は次の言語で読めます: 英語

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