July, 2011年

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

2011-07-23

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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!!

 

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

2011-07-19

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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?”

 

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

2011-07-03

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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.

owever 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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