In Pittsburgh (2004-2006)

2012-01-02

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After receiving his doctorate, my partner looked for opportunities to work overseas and was introduced to Dr. Cooper of Pittsburgh University.  In June of 2004, we moved to Pittsburgh, Pennsylvania and lived there until August of 2006.  My partner was hired as a Post-doctoral Research Associate at the Human Engineering Research Laboratories.



Because the United States was a country of immigrants, they had free public English classes for people from overseas who could not speak English and who did not belong to any school such as university and would otherwise not have a chance to learn English.  The teachers there were volunteers and the textbooks were free.  For 1 year and 9 months, I went to class 4 times a week, rain or snow.  I never skipped class because it would be such a waste to pass on this free offer.  It took me 25 minutes in my powered wheelchair to get to class.  In class, a 21 year old young man from Turkey helped me take off and put on my coat and jacket.  He would also get my stuff, like the dictionary and pens, out of my bag, and after class, would put them back in my bag for me.  American education was all about encouragement.  If I came up with a good answer the teacher would say “Smart, smart!”  It made me happy.  I enjoyed my classes very much.



 

 

 

 

People from overseas who could not speak English could also get private tutoring every week.  A Russian Orthodox priest who did not know any Japanese taught me.  We held the 1 hour and a half tutoring sessions at the library.  He understood my broken English.  When I participated in the protest by ADAPT (American Disabled for Attendant Programs Today) from March 17 to 24, 2006, I knew my caregivers nor anyone else there spoke any Japanese.  My tutor made a notebook with illustrations on how to take care of me so that I could use them to communicate with my caregivers.  This helped me greatly and I didn’t have any problems the whole week I was there.



   One day when I was going to a nearby supermarket to get groceries, someone called out from a car as I passed by “Hey, are you the wheelchair gypsy?”  It seems I had gained a new nickname within 1 or 2 months of living there.  My niece who’s lived in Pittsburgh for 10 years and my partner both heard from their colleagues things like “I thought I saw her in Oakland a little while ago, but I just passed her downtown” or “I saw her in Station Square.”  People were surprised to see an Asian woman in a powered wheelchair popping up all across town.  For me, I was doing what I always did back in Japan.  The distance I traveled in my wheelchair was not so unusual to Japanese powered wheelchair users.  Some Japanese powered wheelchair users commute daily to work centers for people with disabilities using up their batteries completely by the time they get there, get on a different wheelchair during the day while recharging the batteries, and ride the recharged wheelchair to go home.



 

 

 

 

 

People imagined that it would be difficult for a person with disability who didn’t speak or understand any English to come and live in the United States.  Especially my niece’s husband who was born and raised in Pittsburgh was extremely worried for us and thought that what we were trying to do was mad.  But once we got here, I never spent my days locked up in the apartment.  When I was in Japan, people weren’t interested in listening to what I said anyway, and people couldn’t understand what I said either.  I was use to people not understanding what I said.  In the States people smiled at me, they were friendly and polite, and greeted me all the time.  I had lots of fun riding across town.  When I went to the supermarket, I enjoyed meticulously checking the receipt slip for any mistakes at the checkout counter and got my money back even if it was off by a nickel.  I have an articulation disorder.  This coupled with my broken English and bad accent made me even more difficult to understand, but I always managed to get my money back.

 

There is a market district in downtown Pittsburgh called the Strip District.  There are ethnic food stores here as well.  Wholey’s Fish Market was a large store that sold seafood and meats at the Strip District.  Because seafood and meats were fresh and because they had really good prices, I went there several times a week even though it was 6 kilometers away from our apartment.  You rarely saw powered wheelchairs in this crowded and rather chaotic part of town.  Being a foreigner in a powered wheelchair, I stood out, and all the clerks at Wholey’s remembered me.  Because the local hockey team is the Penguins, Wholey’s had a guy in a penguin suit when they had a sale.  The president of the store was there to check out the customer flow and noticed me.  He got the cameraman to take a picture of him with the wheelchair gypsy and the penguin.  I heard that this picture still hangs in the president’s office at Wholey’s and that the president talks about it to people.  In the Strip, there was also a vegetable and fruits grocery with fresh produce and good prices.  This shop had a real market feel to it with their carts of produce lining the front of the shop.  With my limited vocabulary, we really couldn’t communicate very much, but the shop clerks remembered me as the customer that needs the receipt.  The clerks hung the grocery bags on the back of my wheelchair, and on rainy days, moved the carts in front of the shop to make it easy for me to pass.  They even helped me put on my raincoat.



 

 

In September of 2005, we made an oral presentation at the AACPDM (American Academy for Cerebral Palsy and Developmental Medicine) conference held in Florida.  We went there because AACPDM was the authority in the United States for cerebral palsy research.  We realized that people attending the conference were medical professionals and experts of the field.  Very few people with cerebral palsy were present.  I wanted to meet and get to know my peers, people with cerebral palsy who were also fellow activists and researchers.



 

 

In order to meet my peers, we contacted a Japanese woman who was a caregiver and secretary to Judith Heumann.  She introduced us to the wife of the late Justin Dart, Yoshiko Saji Dart.  We spoke to her over the phone.  I told her that when I was still going to the special school for people with disabilities, Justin Dart came to Japan and visited my school.  I said I met her then when she was interpreting for Justin Dart.  She introduced us to June Kailes.  We drove to Washington DC to meet her.  She told us about a new organization that was recently set up by people with cerebral palsy.  We decided to go to their 2nd conference held in October.

In October of 2005, we went to the 2nd conference of the CP Group, an American group for people with cerebral palsy.  The conference was held in Washington DC.  We found out that many of the people with cerebral palsy in the United States were highly educated and even had high paying jobs.  They debated actively on many issues including discussions about their body and love life.  We became friends with one of the founders of the CP Group, David Bauer and his wife.

 

In November of 2005, my partner went to the WCPT (The World Confederation for Physical Therapy) AWP (Asia Western Pacific) Region Conference in Seoul to make an oral presentation which I coauthored.



At the supermarket near my house in Pittsburgh, there was a man with cerebral palsy.  His name was Bob.  He was there every week collecting donations.  I had guessed that he was begging for money for his own living.  He told us that this was his job and he was collecting money for a children’s welfare fund.  He said he lived in a house he bought for $1 from the previous owner.  We were surprised to hear that he bought a 2 story house and the land for just $1.  The previous owner of the house was an old lady who lived by herself.  She didn’t know what to do because she was having trouble going shopping due to her weakening legs.  Bob went to her every day to ask her what she needed, did her shopping and helped out.  He did this out of kindness.  The old lady was moved by this gesture.  Because Bob was the person that helped her when she most needed help, she left the house to him in her will to sell it to him for $1.  Better is a neighbor that is near than a brother far off.  Now, Bob’s caregiver and the caregiver’s family lived with Bob in his house.  Instead of paying rent, the caregiver cared for Bob.  This arrangement worked well, and he has been living like this for most of his life.  Hearing stories like this made me feel that people with cerebral palsy are much more accepted in society and respected as an individual in the United States compared to Japan.

 

  From February 2 to 5, 2006, we went to ICPC (International Cerebral Palsy Conference) held in Oulu, Finland where we made an oral presentation.  Roslyn Boyd from Australia presented after us.  She told us that she was the scientific convener for the next ICPC in Sydney.  She asked us to come and present.  Milivoj Perat asked us to submit for ICCP in April in Slovenia.

 

From March 17 to 24 of 2006, I went to Nashville, Tennessee by myself to take part in a direct action protest by ADAPT (American Disabled for Attendant Programs Today) where 68 arrests were made.  The notebook with illustrations on how to take care of me that my English tutor, Ilias, made for me was a great help because no one there, including the caregivers, spoke any Japanese.  I didn’t have any problems the whole week I was there, but what I couldn’t do was communicate my feelings to the people there.  This is why I put my thoughts together in writing and asked to have it posted at the website created by Mark Johnson called Let’s Get Together.  Mark Johnson was one of the key members of ADAPT.  It is a bit long, but I have included the text below excluding the graphics used in the original version.



To all brothers and sisters fighting for disability rights:

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, the 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.

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 hours’ 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 someone 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:

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 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 subjects 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 lifelong perspective among people with CP. We also presented 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, Finland and at the World Congress of Rehabilitation International 2004, several 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.

Also my husband’s fellowship at the University of Pittsburgh expires soon. I am hoping anyone has any suggestion or advises to find a way to continue our study in America because I believe we have not finished all the things we came to do in this country such as finding people to join our research, collecting data from Americans with CP, procure funding for a worldwide study, etc.

Thank you

MASAYO FURUI

 

( http://www.lgtinc.org/authors/69/Masayo-Furui )

 

 From April 20 to 22, 2006, we made a poster presentation at ICCP (International Congress on Cerebral Palsy) held in Bled, Slovenia.  This was the conference lead by Dr. Perat.  At the conference we met the chair of AACPMD.  We asked him “You promote the efficacy of operations and drug intervention on children, but do you not feel responsible for the secondary disability that surface in adult life that are caused by the operations and drug intervention made during childhood?”  He said “That is not my field of expertise.”, and “Secondary disability was caused by selecting the wrong type of operation or intervention in the first place.”, and we could not get a straight answer from him.  An experienced physical therapist from Sweden, Elizabeth Price, was sitting next to us and was listening to this conversation.  She encouraged us and told us “I am glad you said it.  It was a bold statement.”  We got to know her well during the reception in the evening, and she asked us to come to Sweden and present there.  The executive officer of ICPS (International Cerebral Palsy Society) was also at our table.  ICPS is an organization where most of the members are parents or people who are directly involved.  We were asked to become a member organization, but because the membership fee was quite expensive, we decided to join as regular members.

 

From June 14 to 17, 2006, we made an oral presentation on the Green Grass protest at the Kawasaki bus terminal at SDS (Society for Disability Studies) conference held in Washington DC.  The theme of the conference was “Disability Goes Public

この投稿文は次の言語で読めます: Japanese

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