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.

この投稿文は次の言語で読めます: Japanese

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