Second time in Osaka (2006 to present)

2012-01-01

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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.

 

この投稿文は次の言語で読めます: Japanese

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