古井正代のプロフィール


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1952年 姫路市生まれ


 

予定
 

 

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ENGLISH VERSION OF ARTICLES IN THIS WEB SITE~~~~~~~~~~~~~~~~~~~~~~~~~~

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About the Great East Japan Earthquake

April 26, 2011

For people who are still staying within the evacuation zone, it seems that they are more concerned about protecting their current livelihood than the health effects that may become apparent ten years down the line.  However, the reality is, nothing is reaching inside the evacuation zone; newspapers, postal service, deliveries, nor relief supplies.  Currently, people with disabilities who have been left behind in the evacuation zone are surviving thanks to the efforts of the JDF Disaster Area Support Center for People with Disabilities Fukushima.  At this time, we must find a safe place for these people to stay.  The rights of people with disabilities to live in the community are being compromised in the disaster zone.  Families of people with disabilities who have already been doing all they can to continue living in the community even before the disaster, have now found themselves in a situation where the living conditions at the temporary evacuation shelters have made it impossible for them to stay at the shelters, and are forced to return to their houses back inside the evacuation zone.  This situation is so unbearable that the families are seriously considering that “May be she/he is better off in an institution.”  In some cases, because there were only enough space to provide one tatami mat per person at the evacuation shelters, and a wheelchair user would require at least two tatami mats worth of space, people were refused from the evacuation shelters.



In this disaster, “community choice” for people with disabilities is being undermined.  Especially in Fukushima Prefecture, the secondary manmade disaster of the nuclear power plant is compounding the problem.  The government announced that the evacuation zone will be set up for 9 months, but it is uncertain whether the effects of radiation can be brought down in such short time span.  People who have left their houses “temporarily” are in a situation of possibly having to “relocate”.  And, if they cannot return to where they use to live, it is sound judgment to consider places further away, outside of Fukushima Prefecture, where the effects of the radiation will be lower.  In such cases, relocation support is needed at the new location including application for welfare.  For people with physical disabilities, it may be possible for them to live alone with necessary welfare, but for people with intellectual disabilities, the whole family may be relocating with the individual, and so, support for these family members such as financial support must also be considered.



The criteria of what is a suitable place to live will greatly differ depending on the type of disability.  We need to create the kind of support than can accommodate to these differing needs.  This is not something we leave the people in the disaster stricken areas to work out for themselves, but something we must do together.  For this, I ask the people reading this to come forward with your thoughts and ideas.  I look forward to hearing from you.

Masayo Furui

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May 16: Report from the Disaster Area

May 16, 2011

I arrived in Koriyama City on May 11 and started to visit the evacuation zone and the evacuation shelters once again.

 



What I found out was that at one point, more than 100 people with disabilities and the elderly who needed care were in the evacuation shelters in Fukushima Prefecture.  I also found out that most of these people have been moved to institutions and large scale institution complexes in remote locations called “colonies” in the nearby municipalities.  I received this information from a physician who was assigned to the first aid center at the special care evacuation shelter (welfare evacuation shelter).  Before the disaster, this physician had his own practice in a town close to the nuclear power plant.  He told me that after the disaster, he cared for many people who relied on oxygen tanks, and that he stayed with them as they passed away when the oxygen tanks ran out.  Immediately after the disaster, with communication lines cut off, with shortage of medical supplies, and with logistics inside the evacuation zone halted after the evacuation order, the doctor spent many hours with these people who were left there to die.  He continued to witness such deaths as he was assigned to different places inside the evacuation zone.  In an effort to prevent deaths caused by lack of medical supplies and care, when this doctor was assigned to the first aid center at the special care evacuation shelter, his policy was to send everyone who need nursing care to institutions with medical facilities in nearby municipalities.  His efforts were so successful that now there is no one left, both people with disabilities and the elderly, who require nursing care at the evacuation shelters.  This doctor negotiated with the prefectural government so that the nearby municipalities would accept people with nursing care needs into the institutions over and above the capacity of the institutions.



 

 

I can understand why this doctor did what he did.  However, even with this understanding, I want to point out that in this process of sending people to institutions, the will and the decision making of the people with disabilities were most likely not taken into account.  People with disabilities, including myself, fought for over 30 years against institutionalization.  When we look at the predicament of people with disabilities in the disaster areas in this light, we see that after major disasters, people with disabilities are easily forced back to a state where our human rights can simply be taken away.  Furthermore, this situation only became apparent because a specialist from the JDF Disaster Area Support Center for People with Disabilities Fukushima visited the evacuation shelter to gain this testimony in person, and this information was never offered to us at any time during our activities in the two months following the disaster.  From tomorrow onwards, we will start to visit the institutions where the people with disabilities with nursing care needs were sent.  We fear that the history of institutionalization and segregation of people with disabilities will be repeated once again.

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May 18: Report from the Disaster Area

May 18, 2011

We went to the institution complex in the remote mountain area of Iwaki City in Fukushima Prefecture in search of the evacuees with disabilities.  The complex was made up of multiple institutions, but we could not find many people who would talk to us.  From what little we could gather, we were told that there are or were 3 evacuees in one facility and 6 in another (5 from a group home and one person who lived at home).  We asked to meet them but were told that this was not possible because “a bad cold was going around”.  We were left concerned about how the evacuees were doing.  We were told that the largest issue this institution complex is concerned about is how to evacuate if the nuclear power plant was to explode again.  We were told that at the time of the tsunami, people from institutions within the mandatory evacuation zone of 20 kilometer radius of the nuclear power plant were taken on a training ship from a fisheries high school that docked to one of the buildings not washed away by the tsunami.  These people were evacuated to large scale welfare institutions in Chiba and Shizuoka Prefectures.  We were also explained that in case of another emergency, the institution complex has already secured a site in Nagano Prefecture that will be able to take in everyone there, and that they have already discussed both with the government and the local government of Fukushima Prefecture to send busses to transport everyone.  Because a “bad cold was going around” we could not hear firsthand how much of this was actually being communicated to the people institutionalized there, nor their thinking.

 

We also received notice that in the turmoil after the disaster, 5 people with disabilities who lived at home decided to get together to rent a house in Iwaki City to live together.  However, how these people were doing could not be confirmed because the Advisement Office for People with Disabilities of the local government had not gone to find out.  In fact, when we contacted the office, they asked us, the JDF Disaster Area Support Center for People with Disabilities Fukushima, whether we could go and talk to these people instead.

 

Through our visits, it is becoming more and more apparent that both people in institutions and people living in the community are being misled and are being led away from the community into large scale institutions.

 

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May 30: Masayo’s Diary

May 30, 2011

 



 

We visited a privately operated care facility for people with disabilities in the disaster area.  At this facility, young staff with children had all evacuated, and until recently, could not run their day-care service.  With continuous support by volunteers from us, the JDF Disaster Area Support Center for People with Disabilities Fukushima, and new staff we introduced, together with the remaining staff who were middle age and above or single (though some of the staff in this demographics had also evacuated) as well as some staff who returned after having evacuated for some time, the facility finally restarted their day-care service nearly a month after the disaster.  When a man in his 50’s with motor impairment caused by the central nervous system who use to be a regular came, the staff were shocked to see him in an unbelievable state.  Before the disaster, this person was able to walk a little while holding on to something and was able to use the bathroom.  After the disaster, he spent some time in shock and had lost the will to move.  Because there was nowhere to go, he stayed inside the house causing further deterioration of movement.  There was no home-visit nursing care.  The elderly mother who lived with him could not assist him physically when going to the bathroom.  So even though he could feel his need to urinate, he started to use diapers.  What happens when people who can feel the need to urinate use diapers?  It breeds a sense of helplessness.  It makes people believe that “Whatever I do, I cannot change anything.”  Repeated blows to their self-efficacy will lead to complete helplessness and make people lose their will to live.  For this man, regaining self-confidence may be a long path and something he needs to work on through building relationships with the people who come to the day-care facility and the staff there.

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May 30: Masayo’s Diary Part 2

May 30, 2011

People in Fukushima Prefecture are receiving unreasonable treatment in multiple levels.  A person I met told me about her brother who drove to Akita Prefecture.  When he returned to his parked car someone had sprayed across his windshield “Don’t leave Fukushima!  Go home!”  Another person told me that when she drove to Sendai City with her family she found her parked car, which had a Fukushima license plate, destroyed.  They had to rent a car with a Miyagi Prefecture license plate to return home.  Cars with Fukushima license plates and products from Fukushima are cause to be targeted.  There is no rational reason for attacking people of Fukushima for the nuclear power plant accident and the contamination that followed.  Why are people taking on these hateful acts?  Slogans such as “disaster recovery” and “let’s come together Japan” are being used excessively while irritability for the uncertain future is plaguing us with social unrest.

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June 16: Masayo’s Diary

June 16, 2011

Many countries such as Italy are stopping their nuclear power plants or are starting a discussion to do so.  Even from these actions, we see how seriously the world is taking the Tokyo Electric Power Company (TEPCO)’s accident.

 

Japanese law does not treat internal exposure as radiation exposure.

 

This is a tragic consequence of being the only country to suffer an atomic attack.  The atomic bombs created so many victims of radiation exposure that internal exposure was neglected.  This was because internal exposure tended to take more time for the effects to surface and was more difficult to prove the relationship of cause and effect.  Radiation victim aid was set up by excluding internal exposure and limiting the number of recipients.  Even for the victims of Hiroshima and Nagasaki, only a limited few who won individual lawsuits for internal exposure had a chance to get their stories heard.  Everyone else was silenced.  Worst of all, anyone heard to have a family member who suffered from internal exposure was ostracized as being “a carrier” and “tainted”.  This discrimination caused by the wrong of eugenic ideology forced victims of internal exposure to keep it carefully hidden.

 

The statue of the Children of the Atomic Bombing at the Hiroshima Peace Memorial is a memorial to all the children who died from the effects of the atomic bomb.  It is a statue of Sadako of Hiroshima or the Girl of the Folded Cranes who died from leukemia caused by internal exposure.  We must expose the fact that internal exposure will inevitably increase the number of deaths, illnesses, and people with disabilities, something the government is trying to conceal.  We must plan and prepare for these increases.  However, it also crucial to point out that we must not treat the increase in the number of people with disabilities as being tragic.  To see this as a tragedy is to feel that having a disability is tragic.  In our fight to exposing the reality, people with disabilities must also face the eugenic thoughts that have been internalized within us.  Our fight is not just about exposing the unsaid truths but is also a fight against eugenics.

 

Based on this understanding, we must try to imagine the situation people with disabilities were facing at the time of the tsunami and the nuclear power plant explosion.  We all saw the shocking images of the tsunami.  It is easy for us to imagine that many people who could not run away in time were swallowed in the tsunami.

 

(photo)

Nursing home where bedridden elderly were washed away

 

When we visited Minami-Soma City, we heard of a very brutal and graphic reality.  Just at the borderline of the tsunami, there was a nursing home for the elderly.  Here, people actually saw bedridden elderly floating on mattresses being washed away one by one.  People who had climbed onto roofs witnessed this.  There was nothing they could do to help.  Among the witnesses, there must have been staff at the nursing home.  There may have even been, among the witnesses, elderly at the nursing home who could walk just enough to get to safety.  It is believed that most of the people with disabilities who could not walk died in the tsunami unable to escape.  People who saw it happen, however much they tell themselves that there was nothing they could do, will feel that they let people die before their very eyes and did nothing about it, causing them great guilt and pain.  It is possible for such guilt and pain to turn people to eugenic ideologies because it will be easier to bare the guilt and pain if they believed that it was justifiable that they survived while others didn’t.

 

The grave reality is that the radioactive contamination from the nuclear power plant created an even more appalling case of leaving people to die.  The mandatory evacuation zone is set up in a 20 kilometer radius from the nuclear power plant.  This means it covers 40 kilometers of the coastline, i.e. the diameter of the mandatory evacuation zone.  The tsunami reached about 4 to 5 kilometers inland.  I would like you to imagine what happened in this area, an area where helicopters didn’t fly over and where the Self-Defense Force didn’t enter.  Is it plausible to believe that no one was stranded in this forgotten 40 kilometers of coastline that neither the media nor the people who lived there ever entered again?  Many people in Miyagi and Iwate Prefectures were rescued from the tsunami area, but in this strip of coastline, 40 kilometers long and 4 to 5 kilometers wide, no one went in.  Most likely there were just as many survivors here waiting to be rescued as in Miyagi and Iwate, but there was no rescue, and they’ve been left there ever since, for 3 months now.  We left them to die out.  People with disabilities, children, and the elderly all waited for rescue that never came.  They hung on believing that “someone will come”, stranded, looking above into the sky for signs of people coming to help them.  We must accept and face this gruesome fact.  People with disabilities in the tsunami area of the mandatory evacuation zone where left to die in this way.

 

People with disabilities who were not harmed by the tsunami but had to evacuate were taken out of the regular evacuation shelters, without explanation or consent, as if detained, and sent away to institutions in other prefectures.  This was government policy.  People with disabilities who have, with great effort, managed to figure out ways to live in the community were now being shipped off and forced into overcrowded institutions in far way places.  All in the name of saving lives.  What is it like in these institutions?  For us who have witnessed the history of confinement of people with disabilities “for their own good” can easily imagine what it is like.

 

The institutions use the mantra “this is for your own good” and exploit the deep-seated sense of inferiority to make people with disabilities institutionalized there to believe that they can be excluded from society in this way.  They are made to complete to be “less of a burden” and to try to “do things like an able-body.”  The people with disabilities in institutions are made to rank themselves by how able they are, creating a strict hierarchy among themselves that governs everything in the institution.  They are conditioned to accept this structure so that the institution can run with the least amount of resource and manage even though they are constantly understaffed.  People from Fukushima Prefecture have been packed into these institutions over and above their capacity.  And because these people are from Fukushima, they are of course not welcome there (see May 30: Masayo’s Diary Part 2 for why people from Fukushima are ostracized as being tainted with radiation).

 

In fact, an evacuee with autism who was transferred to an institution in Chiba Prefecture ran away and drowned to death.  Such a gut-wrenching incident happened because this girl was all of a sudden taken to an unfamiliar place and forced into a stressful and isolated environment in addition to all the anxiety from the disaster and the aftermath.  It is not at all surprising that she fell into a state of panic.

 

The cruelty of eugenics is in operation in all of these situations deceiving us into believing that all of this was inevitable.

 

The cover up of the true state of contamination, leaving people to die and acting like it never happened, and inciting a social climate that tolerates the belief that “life is over if you lose your ability to move” are all happening.  And, even though it may not be apparent on the surface, the eugenic ideology is eating away at our society.  Eugenics is what is preventing us from realizing a society that is accessible, affordable, and sustainable for all.

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June 18: What Prevents Us from Creating a Society that is Accessible, Affordable and Sustainable

June 18, 2011

 

This discussion follows from what I wrote on June 16.

 

The cover up of the true state of contamination, leaving people to die and acting like it never happened, and inciting a social climate that tolerates the belief that “life is over if you lose your ability to move” are all happening.  And, even though it may not be apparent on the surface, the eugenic ideology is eating away at our society.  Eugenics is what is preventing us from realizing a society that is accessible, affordable, and sustainable for all.

 

Since the time of the Great Hanshin Earthquake, there were demands for accessibility for temporary housing.  We had hoped that since we have experienced several disasters since then, the temporary housing that will be built this time around would be one of universal design incorporating all of the learning from past disasters.  We believed this consideration would be part of the temporary housing plan.  Unfortunately, this was not the case.  Multiple groups for people with disabilities voiced their demands from the onset, but (at least in Koriyama City and the vicinity) these logical considerations were passed over, and temporary housing construction is underway.

 

People have told us “My house is accessible, but I can’t go back to it.”  We have heard of cases where people moved into temporary housing which were supposed to be “wheelchair accessible” but had to give them up because they could not get through the doorway, or because they could not reach the housing because the way to the temporary housing was not accessible.  On May 9, the JDF Disaster Area Support Center for People with Disabilities Fukushima received a call from a man saying “I am currently in the hospital, but after discharge, I will need a wheelchair to move around and also need to visit the hospital.  My house is inside the evacuation zone and so I cannot return to my home.  I don’t know what to do.”  In this case also, the temporary housing could not cover his needs and so instead we looked for private housing that could be remodeled to accommodate his needs.  In the end he moved to another prefecture to find suitable housing.  As this case shows, accessibility is not something we need just for people with disabilities.

 

At the time of the Great Hanshin Earthquake, many people developed health issues caused by stress.  They lost loved ones, houses, businesses, jobs, and yet they struggled night and day to pull themselves through.  And in the midst of all this stress, many people developed cerebrovascular disorders or other illnesses causing disability at the prime of their life.  After the earthquake, they rebuilt or fixed their houses but realized that the houses were not at all wheelchair accessible making it impossible for them to return home.  They all said “I didn’t think this would happen to me.”  Have we learned from this experience?

 

The doctor we met at the evacuation shelter told us “I don’t know if it is stress, but an alarming number of people are developing high blood pressure.”

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So that You Don’t Fall into “I Didn’t Think…”

June 19, 2011

When people hear accessibility or barrier-free, people think it’s all about buses, trains, subways, and buildings, but in fact, accessibility is all about how we think and feel.  It’s the barrier we put up inside us.  Even now, when we go outside in wheelchairs we hear people talk.  “I wouldn’t want to be like them”, “I’d die before I’m seen looking like that.”  They are whispering, but we can hear them.  Or, even if they are not saying it out loud, they look away, giving away their thoughts.  I use to paint oil paintings.  The articles in newspapers and magazines that covered my painting had word like “despite debilitating handicap” and “trying hard even though” to get people’s attention.  My paintings were not seen for what they were but for what I was.  No one allowed my paintings to speak for themselves, to tell their story.  They were not seen as a piece of art.  In the media, people with disabilities are shown in welfare programs on the national public television’s education channel.  People with disabilities are stereotyped as being synonymous to welfare, as if our whole existence resides inside it.  Isn’t this the barrier we build up against accessibility?

 

I remember how it was 40 years ago.  When people with disabilities went outside, we were stopped and asked “which institution we ran away from.”  Things are actually not all that different now.  Instead of “institution” the word now is “welfare.”  It is the same.  We are trapped inside it and are separated from the rest of the world.

 

I wonder how many people with disabilities are employed in businesses with full pay, not the reduced salary paid to people employed for the purpose of fulfilling the disability employment quota.  How many are in university and graduate schools?  Even to this day, Japanese resumes require description of physical condition, and employers mandate medical examinations.  In examinations, finishing in the allotted time same as everybody else is an essential criteria.

 

In the West, you do not even put your gender in your resume.  You don’t even have a photograph of yourself.  This is because your photograph will show your race and gender which may be cause for discriminatory practice.  Of course you do not have to write down your physical condition.  In examinations, it is possible to take all the time you need in a separate room.  If there is a request, it is also possible to have people who can handwrite for you or to have caregivers present to assist you.  I was watching a kid’s program in the United States and saw an African American boy with cerebral palsy in an powered wheelchair in the opening scene every time.  In the toy store you find Barbie dolls and teddy bears in wheelchairs together with all the other toys.

 

In Atlanta, Georgia, it is city regulation for all newly built houses not to have steps at the front door.  There is also a stipulated minimum door width.  It is a requirement to have a wheelchair accessible bathroom on the first floor.  Even for houses built before the passing of the regulation, it is possible to apply for public support for such improvements.

 

People who feel that there is “no need to go that far” and that this is “going overboard”, need to face the facts.  No one dies an “able-body”, and no one was born without need of care.  Everyone needed care in their upbringing.  Making concrete steps towards change is the only way to realize a community where your neighbors can always be your neighbors regardless of their changing needs.

 

In the past, when people with disabilities demanded for elevators in every subway station, many of the reactions were “it will be too costly” or “may be not at every station.”  Now, we see parents with strollers, people with canes, people with luggage, young people who seem to have no apparent need to use elevators, and all kinds of people use them every day.  It has become so “common” to use the elevator, that when people notice a wheelchair approaching the elevator, some people pound on the “close” button and shut out the wheelchair user because they don’t want to share the elevator with people with disabilities.

 

No one stops to think “I wonder why they placed an elevator here in the first place?”

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Deja-vu that Started in Iidate Village (Collection of Thoughts)

July 3, 2011
  1. Sensation all too familiar for people with disabilities
The first time I visited Iidate Village in Fukushima Prefecture was back in April, the day before the village was to become part of the evacuation zone.  I saw elementary school children walking back from school with their yellow school caps and school bags with no masks or other forms of protection.  There was something disturbingly wrong with this scene, and I immediately thought “What are the adults thinking?”  Then, almost at the same time a strange sensation, an eerie, uncomfortable sensation came over me.  It was a familiar sensation but unexpected.  This sensation never left me since.  It was recently in the news that we asked France to diagnose 15 children from Date City and Fukushima City for internal exposure and all of the 15 children were found to have suffered internal exposure.  I felt the same strange sensation when I heard this news.  No one really said it, but wasn’t this all “expected” from very early on in the nuclear power plant accident?  I started thinking about this recently, and realized that the sensation that came over me in Iidate Village back in April was deja-vu.  This was a sensation all too familiar for people with disabilities but may be completely unknown to others.  This is the sensation you feel when you are fed “impossible hopes” towards “unrealistic goals”, when all your questions are just left there unanswered, and you eventually end up even losing sight of who you are.  This is the sensation only familiar to people who have experienced this kind of treatment.

2.Recollection: unrealistic goals

I have a friend who sustained a spinal cord injury in a traffic accident when she was 21 years old.  After the accident, she asked the doctors at the hospital “What will happen to my legs?”, but no one attempts to explain to her that spinal cords do not grow back.  To the contrary, they try to mislead her into believing there was “hope”.  They pointed out the clonus in her ankle, an involuntary reflex in a paralyzed limb that caused muscular spasm creating small movements in the joints, and said “look your leg is moving!”  She finds out much later on that clonus is actually as clear sign that the central nervous system has been damaged, but none of this was explained to her at the time.  This was all done to trick her into believing that she was somehow recovering and that one day she will be back to the way she was.  This is the escapism mentality common among Japanese which try to lead people to believe “inconvenient things never happened.”  What this actually does is leave people in a state of uncertainty until they eventually find out for themselves, making them waste large portions of their life, making them search all over the place, and then hitting them with the disappointment.

 

However much you put off, there are certain realities you must face.  You cannot use your one-sided values to label a situation as “hopeless” or “tragic”.  In Japan, trying to assist someone in making a “fresh start” from the onset is often seen as “heartless” and “cruel” because this notion is so alien to the Japanese people.  However, in other countries, this is working very well.  There is a famous medical center for spinal cord injuries in Atlanta, Georgia, the Shepherd Center.  Director of Advocacy, Mark Johnson who is also a sufferer of a spinal cord injury himself says as follows:

 

“We call in the families before discharge and tell them that the families must first accept that “this is a creation of a new life with a new body” and to “not be obsessed with what was.”  To get the hang of this, we get the families to rent an accessible apartment near the medical center and live there with the patients so that both the patients and the families have a change to try out this new lifestyle and to build confidence.  This trial period builds up the power the patients need to enjoy their new life with pride as people with disabilities so that they can continue to do this even when they go back to where they use to live before the accident.  Many people with spinal cord injuries have gone on to have families, and enjoy paragliding and scuba diving.”  These people do not spend their lives tormented with gloomy rejections of their disabilities.  People go back to their old jobs and go on living a fulfilling and happy life.  At the end of their satisfying lives, many people decide to leave all their estate to the center as donations.  Receiving these donations is also the responsibility of the Advocacy Department.

 

After the disaster, people with disabilities in the affected areas of Fukushima Prefecture were all sent to institutions.  Many chances of creating a fulfilling and successful life have been taken away.

3.Recollection: assistive technology before loss of ability

You will be left with regret if you do not calmly consider how you are going to be and create a realist image of your future self.  Many people with cerebral palsy in Japan have been trained to “walk, just try to walk” so much so that it is embedded within our mentality to “try to keep walking until you just can’t anymore.”  The system also only allows us to have mobility tools only if we’ve “lost the ability” to do so.  For this reason, in Japan, many people in their adult years and middle age develop secondary disabilities such as damage to the nerves in the neck (cervical spondylosis).  In the United States, however, people use powered mobility tools such as electric scooters from an early age before they lose their ability to walk.  This is why secondary disability such as cervical spondylosis is not common among people with cerebral palsy in the United States and therefore not a major issue to be debated.

 

The Center for Assistive Technology (CAT) at the University of Pittsburgh provided me with a state of the art powered wheelchair even though I was foreigner staying there for just a few years.  Physical Therapist Rosemarie Cooper (current Director of CAT) wrote in my prescription that “her condition is likely to deteriorate if nothing is done which will cause excessive strain on her muscles requiring her to undergo spastic alleviation treatment” and that “as a housewife it will be difficult for her to conduct housework if she cannot reach for dishes in the cupboard so she will need an elevating function.”  Based on this logical recommendation, I received a customized powered wheelchair with powered adjustable seating.  In the United States, powered wheelchairs are called assistive technology not welfare products.  The society’s responsibility to make necessary accommodations is no considered “welfare” but “rights” protected under equality.  Before I started using this powered wheelchair, I was having difficulty even going to the bathroom because of cervical spondylosis.  This powered wheelchair stopped the progression of cervical spondylosis, and I am able to function even now without an operation.

 

The situation in the United States is the complete opposite of the Japanese way of making it all about individual “effort” leading people to feel powerless.  People in Tohoku (North Eastern area of Japan) are especially known for their “endurance” and “persistence.”  We need to make sure that their “endurance” does not corner them into powerlessness and that their “rights” are protected under equality.

 

4.Between gut feel and lip service

These thoughts lead me to think about the people in Tokyo who took it upon themselves to distribute bottled water when the radiation level in the water supply became questionable soon after the explosion in March, and measured the level of radiation in the soil around their house and the sandboxes children play in.

 

Politicians may play the game of “nothing really happened”, but the majority of the population is not fooled.  People’s gut feel points to a “terrible future.”  No one really believes the lip service the politicians are repeatedly feeding us over and over about the state of the radiation contamination being “safe.”  In fact, it is breeding social unrest underneath the surface, deepening mistrust and indignation.  It is understandable if the indignation surfaces as attacks towards the Tokyo Electric Power Company (TEPCO) or the nuclear power plant, but sadly it is not turning to these mighty giants, but is being directed into attacks towards anything that is “Fukushima” including the people who are the real victims.  The two episodes I wrote about in “May 30: Masayo’s Diary Part 2” are manifestations of how the dishonest treatment of the nuclear power plant situation has amplified social unrest causing people to take out their frustrations in a twisted way as discrimination towards “Fukushima.”

 

Immediately after the nuclear power plant accident, various counties evacuated their nationals from Japan.  The Japanese politicians called this an overreaction based on rumor, a very awkward excuse.  Local governments such as that of Koriyama City and Fukushima City quickly called in “specialists” on radiation to go around to each area to give talks assuring and reassuring local residents that they are “safe.”  This was very successful, and many people opted against evacuation and relocation.  Now the local residents are paying the price for this decision.  (They are actually the only ones paying the price because I hear that many of the families of the politicians, being that they are economically well off, escaped.)

5.Evacuation zone and internal exposure

How many people really believe that the 20 kilometer evacuation zone is adequate?  The UK, the United States, and Korea said 80 kilometers.  The Singaporean government said the danger zone was within a 100 kilometer radius and asked their nationals not to enter this zone.  (http://www.j-cast.com/2011/03/18090850.html)

 

A young couple, with a 4 year old child and another on its way in August, lives near Koriyama City.  Except for the very wealthy, it is a major decision to leave your home town, especially if this has nothing to do with what you had planned or hoped to do.  You need to think about where you are going to live, how you are going to make a living.  There is no assurance of stability.  You are cutting yourself off from the relationships you have built up all these years, the social support network that is both tangible and intangible.  There is so much uncertainty.  However, this couple, after a lot of thinking, decided to leave the house they had just built to give their children a chance at a safe future.  They would move away from Fukushima Prefecture.  This was a very tough choice.  They asked around, and found out that Nishinomiya City had 50 public housing units available to the victims of the disaster.  They applied but were rejected because “victims were people whose houses were destroyed or people within the evacuation zone.”

 

Radiation exposure is not just about the radiation you receive from the atmosphere or ground.  Radioactive particles that we breathe in or ingest build up inside our bodies causing internal exposure.  This internal exposure is seen as the more serious when we look at the long term effects.  I heard this in a talk by Professor Katsuma Yagasaki, an honorable professor of the University of the Ryukyus, on “How to Prevent Internal Exposure” given on May 17 in Koriyama City  (http://kiikochan.blog136.fc2.com/blog-entry-339.html)  He said “Radiation exposure is an attack on the DNA, and small children and expecting mothers are most vulnerable because they are experiencing rapid cell growths.  I believe children should be able to grow up in a place with as little radiation exposure as possible.  This is the right of the young people and should be protected without discrimination.”  And yet, the government put together a “safety” standard that was easily brought up 10 folds when setting up the evacuation zone.  A safety standard thought to be absurd outside of Japan.  The government uses the evacuation zone as a basis to deny relocation of families with small children, preventing them from getting to safety even if the families decided that this is the right thing to do.  This is unacceptable.  This is not the attitude of people who believe that this is an issue we need to tackle together.

 

If we include radiation exposure coming from the water and food, in addition to radiation and radioactive particles in the atmosphere, we are not just talking about the immediate area, or not even just about the Tokyo area, we find that very few places in Japan are actually “safe”.  Radiation contamination is spreading into seafood and vegetables.  (http://gendai.ismedia.jp/articles/-/9547)  In July, it was brought to our attention that beef from cattle that ate grass from pastures 60 kilometers from the nuclear power plants contained radiation due to internal exposure of the cattle.  The beef had been distributed and sold all across Japan.  What about the rice that will be harvested this fall?  Is it reasonable to believe that the rice for some reason is unaffected?  In Fukushima Prefecture, except for the evacuation zone, rice has been planted as usual.  The politicians were so busy shushing the truth that they could not begin to imagine how the farmers will feel come harvest season after having planted the crops and tended to them, possibly being exposed to radiation in the process, and not having been told anything about the truth.

 

Now the fisherman who lost their livelihood in the tsunami have worked to rebuild and to start fishing again.  This is the time when we need to be courageous and tell people of the reality they must face and then assist them in making a fresh start based on it.  We need to be careful not to be fooled by the politicians who are trying to hide the “inconvenient truths.”

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What Aid Can People with Disabilities Give in the Disaster Area?

July 23, 2011

Yesterday I went to the progress meeting of the Yumekaze Fund.  This is a fund initially created at the time of the Great Hanshin Earthquake to aid people with disabilities during time of natural disasters.  They reported that the fund is being use effectively after the Great East Japan Earthquake and that they are very busy transport people in Miyagi and Iwate Prefectures.  They said that running the operation is very fulfilling.  I went to this meeting because I had found it strange that so many people with disabilities had survived in Miyagi and Iwate.  We visited Fukushima Prefecture multiple times.  From these visits, we know that in the evacuation zone, because the entire population of the area was moved out, there were of course people with disabilities.  However, we barely found any survivor with disabilities from the tsunami struck areas of Fukushima.  So I asked “Why so many people with disabilities survived the tsunami in Miyagi and Iwate but not Fukushima, so much so that it keeps them very busy transporting them?”  Their answer was what I had suspected.  “There are actually very few people with disabilities.  The people we are transporting are the elderly.”  So they are using the fund set up to help people with disabilities to help the elderly instead.  There is a very important distinction here.  It is true that many elderly need transportation assistance.  What the elderly do not know is that this operation is made possible by a fund for people with disabilities.  The people running this operation are treating the elderly they are transporting as people with disabilities, but the elderly do not know this and may not agree with this categorization.  What I’m trying to say is that a fund for people with disabilities should be used for people who identify with being people with disabilities.  This may seem like a minor point, but it is actually a very important point.  This point, if left uncorrected, may take us in the completely wrong direction when thinking about the social significance of people with disabilities.  I want to emphasize this point now because we are at a critical juncture.  More than ever, we need to let people know of the important role people with disabilities have taken and can take on in our society.

 

I have taken care of the elderly.  I cared for both my father-in-law and my own mother.  I know from bitter experience that the elderly, even if they cannot move at all, do not change their mindset and keep holding on to the belief that “I am not like you (i.e. people with disabilities).”  What the elderly do not realize is that this sense of “superiority” is what makes the elderly constrain, confine, torture themselves to the point of suicide (suicide includes not just active suicide but also passive suicide).  My guess is, most of the elderly receiving transportation assistance from the above operation, are already on the path to gradual passive suicide.  The elderly are not like us who have “always been disabled for as long as we can remember.”  People running the operation need to realize this or they will be met with great shock.  What the elderly need to do is to accept their disabilities and learn to live with pride as people with disabilities.  They need to understand that they are making a fresh start at a new phase of their life.  In order to do this, we need to undo decades of eugenic conditioning.  This is a huge task.  It is common knowledge that 20% of all Americans are people with disabilities.  In Japan, where the rate of aging of the population is twice that of the United States, the reported percentage of people with disabilities is a mere 5%.  In this country, people with disabilities are “inconvenient existences” that they’d rather not notice.  They want to keep us a small minority, keeping us down, making us invisible, and forgetting about us because disabilities are such a big stigma in Japan.  They assign physicians to guard against people calling themselves people with disabilities by making the criteria strict and making people prove how “severe”, “difficult” and “grim” their state is.  Only with this “proof” can people become “officially disabled.”  They make people jump through hoops so that the number of people with disabilities is kept down.  Japan has been closed off from international common sense in this way for nearly half a century.  Because people with disabilities are a small minority, it is easy for the government to cut spending, but if we are talking about more than 20% of the population, spending for people with disabilities would have to be taken up and discussed as a key General Accounts budget.  If this happens, the truths that have been kept hidden will be opened up.  This is the same mentality that drew a line across Fukushima Prefecture after 3.11 to call one side “safe” and one side “contaminated”, the same mentality that tries to make us not notice the unsettling realities.  Creating this kind of false sense of ease will have detrimental effects in our future.  How many times is Japan going to repeat these futile acts before it learns from its mistakes?

 

Two centers for independent living (CIL), Mainstream Association and Muchu Center, announced that they are sending people with disabilities to Iwate Prefecture to aid in the recovery efforts.  Two care givers will be accompanying them.  Direct aid by people with disabilities is obviously necessary and something that should have happened much earlier.  If we let people without disabilities take over the discussion and decision making for the independent living of people with disabilities, we need to wonder what happened to our independence in the first place.  When I tell people I visited Fukushima to support the activities of Mr. Shiraishi, both people with and without disabilities alike tell me “Oh no, but you must have gotten in peoples way.”, “What would you do there?”, and “You were probably just an extra burden on them.”  We have to realize this kind of mentality and value system are what rob us of our independence, creating society after society that treats people without disabilities as needed and people with disabilities as unneeded.  Funds collected in the name of people with disabilities need to be used for people with disabilities.  Furthermore, I believe these funds should also be used to support people with disabilities going to the affected areas to aid so that they can set up what they need and also pay their caregivers from this fund.  This is in fact reasonable accommodation stipulated in the UN convention, and if we are a society that cannot even understand this, there is no future for Japan!!

 

 

 

 

 

 

 

 

 

 

 

 

この投稿文は次の言語で読めます: 英語

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