January, 2012年

In Himeji (1952-1972)

2012-01-07

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I was born in Himeji City in 1952. I was taken on a train to Osaka University Hospital where I was diagnosed with cerebral palsy.  On the way back, my mother was about to jump from the platform of a running train with me in her arms.  My grandfather stopped this just in time.  From this time onwards, it seemed to be the family rule to keep me at the center of the family.  In addition to the 7 family members, namely my grandfather, grandmother, father, mother, older sister, and older brother, I grew up with many people around me including 5 or 6 people who worked for the family business apparel and uniform sewing factory, a live in maid and my grandmother’s niece who was also a seamstress.  Even with this many people helping to take care of me, my older sister stayed with relatives from time to time even before school age when taking care of me took up more of the adults’ time.  This is the opposite of what happened in other families at that time where sending children with disabilities to institutions were common practice.        In 1959, I entered Nozato Elementary School, the local public elementary school.  There, I attended the regular classes.  My grandmother came with me every day to school to make this possible.  My grandmother’s niece (or at times one of the store clerks) would take me and my grandmother to and from school every day in a bicycle.  I sat in a child seat set up in front and my grandmother rode on the luggage rack in the back.  In the first grade classroom, my grandmother and I sat in the back of the classroom with our desks side by side.  In arts and crafts class, my grandmother helped the other children as well.  This made me very popular in class.  After school many classmates came to my house to play.

In June of 1960, when I was in second grade, Shosha Special School for the Handicapped opened.  It was the first school of its kind in Himeji City.  Students attending special education classes of the various school districts were all collected to go there. I was attending the regular classes but was forced to transfer.  If I had to go to this special school, since it was a school that catered to special needs, I thought that at least I would not have to have my grandmother come to school with me every day.  However, special schools in those days made parents come with the children if the children could not do things on their own.  Toilets were traditional Japanese style where you had to squat.  Of course, there were no wheelchair accessible toilets.  That was the situation.  My grandmother understood my thinking, and instead of coming to school with me, made arrangements where she paid a parent of one of my classmates to help me when I needed to use the bathroom.  I was the only one in school with this kind of arrangement. When I was in my last couple of years of elementary school, I went to a carnival with my older sister.  In those days, carnivals had freak shows.  The barker would shout out “This child must have been born this way as punishment of the parents’ sins.”  The shows featured the names of popular Japanese ghosts like “the women with the extendable neck” or “three-eyed monk boy.”  When I told my sister I wanted to go see the freak show, she told me “They’re all fakes, don’t you know.  You’re much more interesting to look at.  Why pay money to see fake ones when I have a real one right next to me.”  I remember this episode as the roots to who I am today.  Since this point onwards, I never stopped asking myself “what it means to be me.”

In 1965, I was in 3 oil painting gallery exhibitions in Himeji City.  I received words of encouragement from the Prefectural Governor and my painting was used in the Himeji Credit Union calendar.  But it bothered me that my paintings were always introduced with words like “despite her handicap.”



In 1967, I entered the High School Division of Harima Special Boarding School for the Handicapped.  Also this year I took on the responsibility of purchasing for the family business women’s clothing store.  In 1970, I entered the Oil Painting Department of Ashiya Fine Art’s School and moved to Ashiya City.  (I use to travel alone or with a friend.)



 

 

 

 

In 1972, I participated in the Executive Committee for the West Japan screening of “Good-bye CP” directed by Kazuo Hara.  This is a 1971 documentary portraying the self-assertion of people with CP trying to live in the community in Japan where people with CP were seen as the ones who should not exist.  This film enlightened me to my way of living i.e. to live with an aggressive attitude sending out the message “What’s wrong with being a person with disabilities?”   In 1972, I hosted the screening of “Good-bye CP” in Himeji City.  This screening was supported by the teachers and parents of Shosha Special School for the Handicapped.  About 100 people came to the screening.

One of the teachers who came to the screening said “Don’t you want to get the graduates of this school who have nowhere to go after graduation together and do something?”  We were able to use one of the classrooms of the school every Sunday and formed Group Ribbon, a group for the independence of people with disabilities.  We also formed a friendship organization called Group Gorilla.  We called this group of people without disabilities gorillas to say “you move your arms and legs but don’t say a word” because we didn’t want them to think for us and tell us what to do, we just wanted them to help us out with our physical needs.  This idea represents the principle of how people without disabilities can support us.

First time in Osaka (1973-1978)

2012-01-06

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In 1974, I formed the West Japan Federation of the Association for People with Cerebral Palsy Green Grass and became the chair for the West Japan Federation.



In 1975, I was the leader of the All-Japan Preparation Caravan for the formation of the Nation Liaison Committee for the Liberation of People with Disabilities.

On January 15, 1976, Masahiro Fujita committed suicide by jumping into a train.  He was a member of Green Grass in Wakayama Prefecture.

             

On January 26, 1976, West Japan Federation of Green Grass together with Mr. Shiraishi and Mr. Hashimoto of Green Grass in the Tohoku Area conducted a direct action protest at the Wakayama Prefectural Welfare Center for People with Physical Disabilities.

In March of 1976, Yoriko Nakahigashi passed the teacher’s license examination but did not get hired as an elementary school teacher.  The “Association for Creating Teachers in Wheelchairs” made demands to the Osaka City Board of Education.  This eventually became a direct action protest.

In 1976, I became the executive officer for the National Federation of the Association for People with Cerebral Palsy Green Grass.

On April 12, 1977, the National Federation of Green Grass conducted a large scale direct action protest in front of the Kawasaki Train Station against the refusal for wheelchair users to board local buses.

               

In 1978, The West Japan Federation of the Association for People with Cerebral Palsy Green Grass was disbanded.

In Nagata Ward of Kobe City (1978-1990)

2012-01-05

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From 1978, my partner and I lived in Maruyama area of Nagata Ward in Kobe City.  Through raising our 3 children, we connected with neighbors and lived a slower paced life, focusing on advocating community living to the people around us in our everyday life.



My daughter was born in 1979.  It was a normal delivery.  I raised her with breast milk from the start.

 

My older son was born in 1980.  He was born 40 days premature and weighed 2,200 grams.  I visited the obstetrician the day before giving birth.  I am quite sure the doctor realized that I was close to labor, but he was the only obstetrician in that private practice, and he had plans that evening.  I think this is why he sent me home telling me to “lie down and rest” even though admitting me into the hospital would have been the right thing to do.  Before daybreak the next morning, I was starting to give birth.  When we called the doctor, he told us that he was away and could not come back in time and to call the ambulance.  I gave birth to my son in my own bed at 5AM.  Even though this all happened in the early hours of the morning, our neighbors noticed something was wrong and came to our aid.  They called the ambulance, guided the ambulance, and took care of our 1 year old daughter while we were taken to the hospital.  The ambulance arrived after birth, and we were rushed to the municipal hospital.  I was discharged after 5 days, but my son had to stay in the hospital for a whole month because he was born premature.  I went to the hospital daily to breastfeed, but I was unaware that I had caught chicken pox during my visits to the pediatric ward.  It seems I had never had chicken pox, and I did not have immunity.  By the time my son was discharged, I clearly had chicken pox and my daughter caught it and finally my new born son.  My son still has noticeable blemishes from the spots he suffered soon after birth.



 

My younger son was born in 1981.  It was an easy normal delivery past the expected date.  I raised all my 3 children with breast milk.

 

In 1982, my daughter started kindergarten.  All 3 children went to the same kindergarten.  It was a 3 year kindergarten so that children started when they were 3 years old.  I took my children to and from kindergarten every day, attended parent’s meetings, and when to Parents’ Day.  I made myself visible as the parent at every opportunity.  At the kindergarten, once a month, there was a party for all the children with birthdays in that month.  Mothers of the children with birthdays in that month would get together and make lunch for all the children at the kindergarten.  At the party, the parents of the birthday children had a chance to speak in front of all the children.  In this speech, I used popular kid’s heroes of the time like the Five Rangers and Ultra Man to explain to them.  “You all think the Five Rangers and Ultra Man are really cool, right?  And you think the bad monsters are all weird looking, right?  If you keep watching these TV programs, you might naturally start to believe that people like me who look different are bad guys.  You might start to believe you have to fight us and kill us.  But shouldn’t it possible for us to get along with the monsters?  Even if some people look different, or their voices sound different, if you weren’t scared of them, may be they can be your friends.  Even if they look different from you, may be they are really fun people.”  I kept talking to the children like this throughout the 6 years my children when to kindergarten.



 

After the older 2 children started to go to kindergarten, my younger son who was born in May (school year starts in April in Japan) had to wait another two year to start kindergarten.  Every morning he would pack his lunch the same as his sister and brother, and instead of going to kindergarten, he when to play at a neighbors’ place.  Our neighbors kept an eye on our children, and through our children, we built strong bonds with our neighbors.  The neighbors came to our place almost every night to drink and party.  The parents and adults knew each other well, and the children all grew up like brothers and sisters.  All the adults around them were like parents.  It was quite customary to see adults scolding other peoples’ children if they were up to no good.



My partner was in charge of all the housework, but once childrearing started to settle down, he decided to go to university.  Now, my eldest who had just started 3rd grade of elementary school was in charge of making dinner.  When we decided what to make, our neighbor came over to teach my daughter how to make it.  The neighbor had 2 daughters of her own, but she said “I haven’t taught my daughters how to cook much.”  She came over almost every day.  My daughter learned home cooking from her.

In Hiroshima (1990-2001)

2012-01-04

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In March of 1990, my partner graduated from university and found a job at the town office in Kumano Town in Hiroshima Prefecture.  Work started in April and so we moved to Kure City (a neighboring city to Kumano Town) and lived there until September of 2001.  As with our time in Kobe, we focused on grassroots advocacy in the local community through our everyday life.  When my children were in elementary school, parents of other children living nearby, who we came to know well, drove me to school on Parents’ Day.  Because I had 3 children in the same elementary school, during the 1 hour of classroom observation, I had to go to 3 different classrooms.  Between the classrooms, a teacher came after 10 minutes of observation to help me get to the next classroom.

On Thursday May 16, 1991, national public television NHK featured our family and how we lived in their program “Ohayo Journal”.  After this program, I gave many talks at the local elementary schools, junior high schools and high schools.  My talks were never about the terrible discrimination people with disabilities experience.  I spoke to the children/students conditioned to connect disabilities with negative images telling them “You may not believe this, but I have a dead brain!  Surprising, huh?  But there’s nothing wrong with that, I enjoy my life every day.  I go to all of my kid’s Parents’ Day.  I go to lots of places and find lots of interesting things.  I’m never bored.”

When my daughter started going to junior high school, my daughter’s homeroom teacher had seen the NHK “Ohayo Journal” broadcast and understood our situation, so the homeroom teacher asked the assistant homeroom teacher to come with a car to pick me up on Parents’ Day.

I started to use an electric scooter (handle type powered wheelchair) and my world changed.

In April of 1996, my father-in-law who lived in Kamigori Town of Ako County in Hyogo Prefecture suffered a stroke and was rushed to the emergency room.  My younger son who was starting his 3rd year in junior high school stayed with him at the hospital from spring break.  My son took time off from school and stayed with my father-in-law even after school started.  My son took care of my father-in-law all throughout the acute phase when care was most needed.  My son did this until May when my father-in-law was transferred to a hospital in Osaka known for its rehabilitation department.

My younger son when he was in 3rd grade of junior high school



My father-in-law sustained paralysis in his right side and also suffered from impairment in speech (aphasia).  I gave my point of view as a person with disabilities since childhood and negotiated with the hospital regarding his rehabilitation program.  I explained, “Even if he can stand and walk, it is not like he will gain back all his ability as before the stroke.  To insist only on movement exercises is like making him look back at how he used to be.  The important thing is for him to enjoy the rest of his life as freely and actively as possible.  I want you to proactively incorporate assistive technologies and give him as many options as possible so that he can decide things for himself.  I want my father-in-law to be that kind of proactive person.”  We were able to get activities like driving outdoors in powered wheelchairs into his rehabilitation program from when he was still in the hospital.  At that time, such a rehabilitation program was unheard of in Japan.

 

Follow me!



My father in-laws lived in a house that was a 10 minute drive from the train station.  It was not part of a bus route.  My father-in-law had a strong desire to go home, and so I explained to the chief therapist assigned to my father-in-law and the other staff at the rehabilitation department that walking with a cane was not enough to realize his wish.  They understood my thinking and fully supported us in what we wanted to do.  After my father-in-law returned home, initially I rode in front of him in my powered wheelchair and had him follow me.  He was able to gain confidence in riding his powered wheelchair after doing this several times.  (See photo)

Perfectly comfortable even in town!!



At the time, my mother-in-law had an eye disease called retinitis pigmentosa which greatly limited her field of view.  She often fell into ditches and frequently suffered wounds and broken bones in her legs.  With his newly acquired powered wheelchair, it was now my father-in-law’s new daily chore to go grocery shopping instead of my mother-in-law.  The store was 30 minutes away in his wheelchair.  He was not someone that had to be looked after.  He was needed.  My mother-in-law counted on him.  He had difficulty speaking, but with the aid of the shopping list my mother-in-law had written down and by combining simple monosyllable phrases like “Ah” and “Um”, he was able to get help and get the shopping done.  People with disabilities like me have lived in the community for years by asking people around us for needed help and by utilizing helpful tools.  It is a widely held misconception that being “independent” is about doing things by oneself without the support of others.  I look forward to the day when it becomes common practice in our society for needed support to come naturally and surely wherever you are.

 

In August of 1996, my mother who lived in Himeji was hit by a car while riding a bicycle.  She sustained injuries to the head (depressed skull fracture).  My sister and I stayed with her at the emergency hospital.  She survived and did not seem to suffer from major motor paralysis.  She was however left with double vision.

In Kita Ward of Kobe City (2001-2004)

2012-01-03

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Going for a walk is fun!



In April of 2001, my partner enrolled into the doctorate program of Kobe University.  For this program, he had to go to the university frequently which turned out to be very difficult given the distance.

 

In September of 2001, we left Hiroshima where we lived for 11 and a half years, and moved to Kita Ward of Kobe City.  My partner found work at a hospital in Kita Ward.

 

I made friends with the wives in the neighborhood.  We had tea parties every day before noon and sometimes had parties with the families at our house.  One such family was a family with 4 children.  The second from the youngest was Sayaka a 3 year old girl.  She enjoyed coming with me when I walked the family dog.  She came almost every day.  Her seat was on top of the battery unit of my powered wheelchair.

 

In May of 2003, after a spinal cord tumor operation, my mother who lived in Himeji came to live with us.

 

My mother continued to live with my father in Himeji after her accident 7 years prior.  My father never did try to have much to do with his daughter with cerebral palsy, me.  My impression of him was that he always said “Are you OK?” and “That’s too dangerous for you.”  After the accident, I can imagine that my father kept saying these phrases to my mother as well.  My mother lost confidence in herself.  She became depressed, and she also started to say “It’s too dangerous” and “I’m scared” all the time.  When my mother came to live with us, she was almost completely bedridden.  I started from getting her to sit up and then to get out of bed.  I taught her to use a powered wheelchair.  I got her to go to the bathroom by herself, walk inside the house while holding on to things, and learn to walk using a walker.  My mother had the ability to walk without support, but she wouldn’t try to walk by herself and kept saying “It’s too dangerous.”



I arranged personal care attendants to come every morning.  I asked them to allow my mother to do what she can even if it meant that it took time.  I stayed with them and coached them on how to do this.  If I didn’t, it was easy for the attendants and my mother to slip into over-caring and disuse of her functions which was the easy thing to do for both sides.  In the 7 years after her accident, it had become her habit to face down on the table and fall asleep whenever she had nothing to do.  I got her to make jigsaw puzzles, and I played cards with her to try to keep her doing something during the day.

 

It took time for her to learn to use a powered wheelchair, because unlike my father-in-law, she did not have the motivation.  I first tried to ride in front of her like I did with my father-in-law, but she kept saying “I’m scared” and only moved at crawling speeds.  It took several months for her to follow me at a slow walking speed.  The next step was to get her to go to a nearby supermarket by herself.  The supermarket was only about 300 meters away.  First, I repeatedly explained to her how to get there.  Then, we started off with me leading her.  I would speed up and lose her and take a side road to get behind her to watch over her.  I saw that as soon as she lost sight of me, she stopped moving.  She would look around but not move.  From there it was a fight against her newly acquired pet phrase “I can only go if you’re with me.”



When she stopped or went the wrong way, I would come up from behind her to lead her in the right direction.  When she eventually got to where she wanted to go, I encouraged her saying “You did it!”  After about 6 months, she started going grocery shopping on her own.  She was able to figure out the right amount of things to buy for the whole family.

 

My mother was diabetic from when she was young.  She had followed a rigorous controlled diet for a long time and had not thought about what she liked to eat or what tasted good to her.  I gave her the chance to choose what she wanted to eat, and she started to include things she actually liked to eat like fillet steaks and grilled eel.  However, she still often allowed herself to only select from a narrow range of items and we had to bear with eating the same kind of things over and over again.



By this time, she went to the bathroom on her own using a walker and would change her incontinence pads by herself.  She changed by herself, folded the cloths she took off and neatly stacked them on her bed by the pillow.  When we took in the dried laundry in the afternoon, she would fold them for us.  When I told her “It’s getting late”, she would say “OK, good night then”, went to the bathroom, went to her room, changed and went to sleep.  She was now able to do all of this on her own.

 

In June of 2003, my partner and I went to the RESNA Conference held in Atlanta.  We realized how different things were outside of Japan.  At the hotel where the conference was held, there were several accessible rooms on every floor, and many wheelchair users were staying there.  (In Japan, even at some of the best hotels, there are usually only 1 or 2 wheelchair accessible rooms in the whole hotel.)  We were astounded when we rode the metro (subway) from the airport to the center of the city.  The platforms and train cars were completely leveled.  We realized that if only people thought about incorporating these features, such designs were possible.  If we give in to the status quo and accept that platforms and train cars are bound to have gaps and height differences, we basically give in to having all sorts of barriers around us.  We realized that the greatest barrier against accessibility was the lack of conscience which led us to not change things even when we realize things were not working or when things could be improved.

 

The RESNA 2003 Chair, Jean Minkel introduced us to Mark Johnson of the Shepherd Center.  We went to the Shepherd Center to meet him.  This visit also caused scales to fall from our eyes.  We were stunned to see that Mark who had suffered a cervical spine injury and was in a powered wheelchair held a high level managerial role at the hospital as the Director of Advocacy.  In his office, there were memorabilia from the time he fought for the passing of the ADA.  He also had on display a bunch of toy wheelchairs and dolls in wheelchairs.  The hospital had a gymnasium that the inpatients used.  There were various courses that taught indoor and outdoor sports to the patients.  There were even courses on paragliding and skydiving.  Programs to prepare patients on adjusting to life back home asked patients to practice by live in a wheelchair accessible apartment near the hospital together with their families.  At the Shepherd Center, life wasn’t “over” when you started using a wheelchair.  It was the start of a new beginning.  We found out that here, there were far more options to choose from compared to Japan, and that the choice to take risks was also a part of your right to make your own life choices.

 

In March of 2004, my partner finished his doctorate at the Kobe University Graduate School of Medicine.  His doctoral thesis was on “Secondary functional deterioration in adults with cerebral palsy: analysis of developing physiological burnout.”

In June of 2004, we gained the opportunity to live in the United States.  My mother decided to stay in Japan and live close to my sister.  She bought a condominium in walking distance from my sister’s place.  By this time, my mother cooked her own diabetic meals (lightly flavored stewed vegetables) and washed the dishes on her own.  She was a dignified independently living person.

 

In June of 2004, we made an oral presentation at RI (Rehabilitation International) in Oslo (Norway).  Our topic was “Rethinking Rehabilitation in People with Cerebral Palsy: From an Analysis of Developing Physiological Burnout.”  We developed friendship with Scandinavian activists.  RI Oslo started with an opening event where 4 or 5 people with disabilities in wheelchairs rode vertically down the wall from the roof of City Hall, which was a stone building built in the 5th century.  This was a sensational way to start the conference with the exciting theme “Rethinking Rehabilitation.”  There was also a musical by people with intellectual disabilities (which wasn’t free and took admission charge).  The most prestigious national opera house was reserved for this musical. 

The keynote speech was given by Tom Shakespeare from the UK.  He gave a passionate speech against eugenic ideology, a topic of great importance to me, and the speech left a great impression.  I realized that finally we have gotten to a point in this world where people have started to understand what we are talking about when we tell them that eugenic ideology is wrong.

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

Second time in Osaka (2006 to present)

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In July of 2006, we moved back to Japan

and initially stayed with my mother in Takarazuka City.

 

 

In October of 2006, we made an oral presentation at EACD (European Academy of Childhood Disability) conference held in Barcelona.  At this conference, even though we had registered and paid money to attend the reception dinner, the shuttle bus the organizer had arranged could not be boarded in powered wheelchairs.  The venue was also not accessible by public transportation.  We made a complaint.

In October of 2006, we moved to Osaka with my mother because my partner found work there.



 

 

 

 

In October of 2006, we moved to Osaka with my mother because my partner found work there.

 

In December of 2006, our letter of complaint was published in the EACD newsletter together with a reply from the chair, Martin Bax.  Several reader comments were also posted in the following issue.  Our complaint basically said “You are the people who forced us to walk when we were children.  Forcing us to walk led us to have secondary disabilities in adult life.  Now that we are in powered wheelchairs, you are ignoring our needs.  You should be ashamed.”, and “I want to know what you think about the predicament of adults with cerebral palsy as cerebral palsy experts.”

 

From a free paper O-13 co-presenter, Masayo Furui

I attended the 18th meeting of the EuropeanAcademyof Childhood Disability. One of the wonderful things in the meeting is there were 2 presenters with Cerebral palsy. It is important to have a researcher with CP in the field of studying CP.      About myself, I have accomplished parenting as a mother of 3 kids, aged 25, 26, and 27. My big daughter graduated from Southern Illinois University at 2 years ago. I also encouraged my husband to become PT researcher at University of Pittsburghin a 2 years post- doc fellowship program regarding Rehabilitation Research.      I have distinguished pride on a life with CP. I was faced a hardship of participation at “Welcome Reception” and “Social Dinner” in this congress. I could not get in the shuttle bus which congress organization arranged because the bus was not accessible. There were no alternatives prepared by the host to people with disabilities without paying extra (which non-disabled participants did not have to pay at all).  And poor Barcelona public transport system made me hard to get there (Actually I missed the reception completely, and I could have enjoyed the Dinner next day better if I was not an hour late.)  I knew people in Barcelona are so kind, but I can’t help to say there were some restrictions of participation in the congress.  “Please pay for your accessible taxi from your own pockets”.  I believe this massage is not ICF model, but below the International Classification of Impairment, Disability and Handicap (ICIDH) model.  I have never ever experienced like this, attending many international congress in the USA,Norway,Finland, and Slovenia. I know many professionals think that “independent walking” is one of the most important goals of children with childhood disability.  I could walk independently in general community in my younger days. I have walked outside of home every day until age of 37 (from 10).  Now I could not walk at all due to the non-existence of preventing deterioration and over use of my body including by walking. And I am facing many discriminations because of my state of mobility (I use power mobility), including this meeting, which is held by the most knowledgeable professionals about CP. This is reality of disabled today. This will not have to be happened in a future of our children with childhood disability. We could focus more on the long term effect of habilitation the children receives such as preventing deteriorations and studying adults with CP. Let’s get together to find out the next option toward positive future of today’s children!!!

 

 

 




In June of 2007, we made an oral presentation at WCPT (World Confederation for Physical Therapy) conference held in Vancouver, Canada.  There we met the keynote speaker Judith Heumann again and became friends.  When we were checking into the hotel, Judy was there by chance.  Even though we had reserved an accessible room with a roll-in shower 4 months in advance, the hotel told us that they didn’t have an accessible room for us for 2 of the nights of our stay.  Judy overheard this conversation and asked for the manager.  She got the hotel to not charge us for the 2 nights we were staying in a regular room and arranged to have the door removed from the bathroom so that I could get in bathroom in my wheelchair.  Judy told us about the time she was discriminated against when she tried to be a school teacher in New York.  We told her that around the same time in Japan, we took part in a movement to allow people in wheelchairs to become teachers.  She said that this was an interesting coincidence.  The day after Judy’s keynote speech, we rode around the city sightseeing.  I found it very funny that Judy spoke English but always got lost.  I couldn’t speak English but my sense of direction allowed me to get to where I wanted to go anywhere in the world.  We were the odd couple where a Japanese person was taking an American person around in Canada.

 

Sightseeing in Vancouver with Judith Heumann, the keynote speaker of the WCPT conference

 

In June of 2007, we made a poster presentation at EACD (European Academy of Childhood Disability) conference held in Groningen, Netherlands.  We met again with people such as Martin Bax, Peter Rosenbaum, and Allan Colver.

 

We meet again with Peter Rosenbaum, creator of GMFCS

 

From October 19 to 22, 2007, we went to the 4th conference of the CP Group as guest speakers.

 

In November of 2007, we made an oral presentation on adults with cerebral palsy and secondary disabilities at the 1st RESKO (Rehabilitation Engineering and Assistive Technology of Korea) conference held in Pusan, Korea.

 

From August 25 to 28, 2008, we went to RI (Rehabilitation International) world conference held in Quebec, Canada where we made two oral presentations.  The topics were “The impact of mobility transition and developing functional limitation among older adults with cerebral palsy  ”and “The grass-roots activism of people with cerebral palsy in Japan:  Early protest confronting inaccessible bus system”.

 

On September 30, 2008, Sachiko Yamashita’s book “What It Means to be Normal: Activism by People with and without Disabilities in the 1970’s” was published.  Our movement during that time was the focus of this book.

 

On December 19, 2008, I published an article in “Women’s Asia 21” (No. 56, pp. 28-30) a journal from Asia-Japan Woman’s Resource Center.  The title was “Exposing the Flaw of the Obstetric Compensation System from the One Who “Should Not Exist””.  I wrote about the Obstetric Compensation System which went into effect in January 2009.  I explained that this system was like making expecting mothers vow to the belief that cerebral palsy was evil and that it was a new way of imposing and reinforcing eugenic ideology.

 

On December 27, 2008, I organized a direct action protest against the obstetric compensation system, and we hand-delivered our letter of protest to the Ministry of Health Labor and Welfare.  Many activists from the time of Green Grass such as Shuhei Ota, Kiyoharu Shiraishi from Fukushima, Hiroyoshi Hashimoto, Yokota Hiroshi from Yokohama, Yoshitaka Matsui from Osaka, Mitsuo Miyake from Kyoto, Takashi Sawada from Hyogo, and Toshihisa Fukunaga gathered from all over Japan.  Activists for disability rights and women’s rights joined us.  We continued our protest and lobby activity in the new year, but the vast majority of the political parties avoided making any clear statement on the eugenic implications of the obstetric compensation system.

 

 

 

 

The person with the yellow blanket in the picture above is Yoshitaka Matsui.  He was an activist I knew well even before Green Grass.  We fought together for our cause.  His health was not well, and for the past 10 years, he rarely left his house.  Still, he joined this protest because he understood the importance of this protest and the grave implication the obstetric compensation system held regarding eugenic ideology.  He passed away early January.  This truly became his last fight.

 

 

 

 

 

From February 25 to 28, 2009, we went to the 3rd ICPC (International Cerebral Palsy Conference) held in Sydney, Australia where we made an oral presentation.  We presented that functional deterioration occurs with age regardless of whether you have a cervical spine operation or not.  We also conducted a workshop on the importance of living with pride as a person with cerebral palsy.

 

On April 22, 2009, the English version of my article “Exposing the Flaw of the Obstetric Compensation System from the One Who “Should Not Exist”” was published in “Voices from Japan” (No. 22: Women with Disabilities in Japan, pp. 26-30) an English-based journal from the Asia-Japan Woman’s Resource Center.

 

On May 3, 2009, we were panelists at the Pacific Rim International Forum held in Honolulu, Hawaii.  We said that the Japanese welfare system is made in such a way to keep people with disabilities poor.

 

On May 4, 2009, we continued to stay for the 25th Pacific Rim International Conference on Disabilities held in Honolulu, Hawaii.  We made an oral presentation on the obstetric compensation system and also pointed out the uniqueness of the activism by people with cerebral palsy in Japan.  In reply to our presentation, Johnny Crescendo, Andrew Imparato and others pointed out the cruel reality in the United States stating that when mothers with severe disabilities give birth, the courts view being brought up by such parents as a form of child abuse, and the courts rule to send such infants to foster care.

 

On November 5, 2009, we presented our paper at the 136th APHA (American Public Health Association) conference held in Philadelphia, Pennsylvania.  Our topic was ““Living with disability: Alternative strategy for an old mother to be led by her daughter with cerebral palsy” and argued the contribution people with disabilities can make to society.  (http://apha.confex.com/apha/137am/webprogram/Session28083.html) At the conference , we happened to meet again with Eleanor Smith, the founder of Concrete Change.

 

On February 16, 2010, my mother passed away at the age of 84.  She died from cancer and pneumonia.  Since 2003, we lived with my mother for a total of 5 years after she started needing care (including 1 month when she came to live with us in the United States).

 

In March of 2010, “Insisting on Community Physical Therapy” was published from Kobun-do.  In this book, I wrote a column titled “Living in the United States in a Powered Wheelchair” (pp. 401-402) in which I compared the positive and negative aspects of the life of people with cerebral palsy in Japan and the United States.

 

On September 16, 2010, Nobuhiko Kadooka published “Crabs Walk Sideways: Half a Century of Independent Living by People with Disabilities” from Kodansha.  I appear frequently in Chapters 1 through 4 of this book.

 

On March 11, 2011 at 14:46, the Great East Japan Earthquake struck.



On March 16, 2011, wewe made an oral presentation  at the California State University, Northridge (CSUN) Center on Disabilities’ 26th International Technology and Persons with Disabilities Conference held in San Diego, California.  Our topic was “Utility of Wheelchair Seated Posture Measurement Based on ISO 16840-1”.  We introduced a Japanese freeware software which allows easy visualization of seated postures in wheelchairs.  We also presented survey results taken with this freeware and explained the significance of the outcome.

 

On the way back to Japan, we again realized the backwardness of Japan when we saw the difference in the way in which American and Japanese airlines handled our situation.

 

 

 

 

 

 

 

 

From April 17 to 20, 2011, I went to visit Kiyoharu Shiraishi and his team in Koriyama City of Fukushima.  I went with Toshihisa Fukunaga who took leadership in relief activities by people with disabilities at the time of the Great Hanshin Earthquake.  We were waiting for the Tohoku Shinkansen bullet train to restart its operation to make this visit.  We went to Minami-Soma City and Iidate Village to see firsthand the realities of the disaster hit areas.

 

 

 

 

 

Kiyoharu Shiraishi called on me to support him in in his activities.  He was extremely busy.  From May 11 to 29, 2011, I returned to Fukushima to help him as a representative of JDF Disaster Area Support Center for People with Disabilities Fukushima.

 

On June 12, 2011, I was invited as one of the two panelists to speak at the symposium “What We Can Do Now: Report from People Who Have Documented and Aided in the Great East Japan Earthquake” held at the Minoh Culture and Communication Center.

 

On July 30, 2011, I was invited to speak at the symposium “What Does It Mean to Have a Truly Safe and Secure Life: From the Point of View of People with Generalized Physical Disabilities” which was Part 8 of a series of symposiums by the Association Demanding Life Security for People with Disabilities (Shougairen).  The symposium was held at the Tokyo Metropolitan Sports Center for the Disabled.  My presentation was titled “Where Have All the People with Disabilities Gone?”  I started by describing my activities in Koriyama City in Fukushima and concluded that Visitability is what is most needed now.  I explained about Visitability which is being advocated by people such as Eleanor Smith who we got to know when we were in the United States.  (Slides from the presentation below)



 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

From August 24 to 26, 2011, the 26th Japanese Conference on the Advancement of Assistive and Rehabilitation Technology (JCAART) was held at the Osaka Central Public Hall.

 

My partner, Toru Furui, was the head of the planning committee of this conference.  To start off the conference, we invited Dr. Rory Cooper, Distinguished Professor of the Department of Rehabilitation Science and Technology of the School of Health and Rehabilitation Sciences at the University of Pittsburgh to give the keynote speech.  Dr. Cooper was also my partner’s boss in Pittsburgh at the Human Engineering Research Laboratories.  His speech was on the role assistive technology played in the United States in empowering people with disabilities.  Dr. Cooper is himself a wheelchair user who has suffered a spinal cord injury.  He is also the world’s authority in wheelchair research.  He started his speech by saying “Assistive Technology: How it impacts the community, improving QOL and changing society’s attitudes towards disability.”

 

 

Our oral presentation for this conference was on the barrier found in Japanese airline transportation.” Attitudinal barrier of Japanese air carrier workers towards powered wheelchair users”

 

We also invited Dr. Jong-Bae Kim to the conference.  He was at the University of Pittsburgh when we were in Pittsburgh and received his doctorate from the university.  He is a powered wheelchair user who had suffered a cervical spine injury.  We were good friends back in Pittsburgh.  He is now the associate director of the National Rehabilitation Center Research Institute of Korea.

 

Koji Onoue, executive officer for the Japan National Assembly of Disabled Peoples’ International (DPI) who also has cerebral palsy, gave the closing speech.  The topic of his speech was “What We Ask of the Persons with Disabilities System Reform and Rehabilitation Engineering Society of Japan (RESJA)”.  He explained the prerequisites for ratifying the United Nations Convention on the Rights of Persons with Disabilities, and the current situation of Japan.  He emphasized that in order to realize reasonable accommodation, we must make assistive technology that is suitable to each person’s disability widely available.

 

After the speech, 3 people were appointed to make the closing remarks.  The 3 people were, Dr. Matsuo Kiyomi of Saga University Medical School who is a wheelchair user who had suffered a spinal cord injury, Takashi Fuzawa a member Japan Association of Quadriplegics who is a powered wheelchair user, and me.

 

I presented on what I had witnessed in Fukushima.  Then, I pointed out the following: The “state of emergency” is being used as an excuse to send people with disabilities who are in need of care to institutions without the full consent of the individuals.  We are at a critical point because all that people with disabilities have worked towards for the past 40 years to achieve independent living is on the verge of being destroyed, and after 40 years, the rights of people with disabilities are still close to nonexistent.  In order to prevent the reoccurrence of what happened in Fukushima, we must build a society of Visitability.  This means whole communities are built to be accessible and you are able to visit any of your neighbors’ houses in your wheelchair.  The professionals who have gathered here at this conference have passionately developed assistive technology suited for the need of each individual person with disability.  For example, there was a report on a powered wheelchair control system for a child with cerebral palsy with GMFCS level 5.  Now the question is, is it possible for this child to go home in this wheelchair?  How about visiting a friend?  Would the child be able to use the bathroom at a friend’s house?  Unless all these barriers are removed, the full utility of the powered wheelchair will not be achieved.  To gain the full benefit of assistive technology, we must create a society where accessibility is available everywhere.  Achieving full accessibility is economically viable and not impossible.  In fact, it is already being implemented in many cities and regions of the world.  To avoid the situation where people with disabilities are constantly facing the risk of being sent back into institutions, we must create communities that are accessible to all.  If the tools and technologies we create are only usable in limited special facilities, we are not making full use of them.  I concluded my comment by asking everyone present to work towards creating Visitability for all.

 

From August 28 to September 2, 2011, I returned to Koriyama City in Fukushima to aid JDF Disaster Area Support Center for People with Disabilities Fukushima.

 

We interviewed about 20 people with disabilities affected by the disaster, and asked for their opinions on the nuclear power plant disaster.  We went to 4 temporary housing locations in Fukushima and realized that temporary housing were located in areas where radiation levels were quite high.  I wondered why temporary housing was not set up in areas with lower radiation levels.

 

From September 14 to 17, 2011, we made an oral presentation on the human rights violation of people with disabilities in the areas affected by the nuclear power plant disaster in Fukushima at the 17th Congress of Child Neurologists of Mediterranean held in Piran, Slovenia.

 

October 15, 2011, I was invited to make a lecture at the symposium organized by General Incorporated Association Frontier. Titled as “What we have to learn from Disaster Area: Network, technique, infrastructures to prepare for future disasters.” Held at Shijonawate Fukushi Community Center, Shijonawate, Osaka, Japan.

 

From December 6 to December 11 in 2011, I returned to Koriyama City in Fukushima to aid

JDF Disaster Area Support Center for People with Disabilities Fukushima.

 

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