Archive for the ‘Publications’ Category

No One Can Be Labeled as Not Worth Living

2013-03-05

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Around 1970, you did not see people with disabilities.  The vast majority were confined in institutions or their homes.  In such an era, we took action to go out into society.  We started with going to places like department stores, Japanese pinball parlors called “pachinko”, and coffee shops.  We decided that we should try going to all the places people usually go to.  At that time, when we went out, people looked at us and wondered which institution we ran away from.

Photo 1  Spring 1981 Doll Festival With my daughter who just turned two in February, son who will turn one at the end of March and me pregnant with my second son due in May.

Photo 1      Spring 1981 Doll Festival:
With my daughter who just turned two in February, son who will turn one at the end of March and me pregnant with my second son due in May.



Sometime later, I married and had three children.  I decided that I wanted three children because I thought, even if my children faced hardship for having a parent with disabilities, they will be able to talk to each other about it and have each other to get through the difficulties together.  However, every time I was blessed with a child, my in-laws nagged me to have an abortion.  After the first child, they said it’s too late to do anything about the first, but don’t have this second child.  After the second child, they said we can’t do anything about the first two anymore but do get rid of the third.  That was generally how people reacted at the time.

 

I enjoyed my life with my children.  I went to all of my children’s kindergarten and elementary school events.  I may not have even missed a single one.  At one point, teachers from school came to my house to pick me up for every Parent’s Day.  When we were living in Hiroshima, I use to give talks at junior high schools and high schools and said “I have a dead brain, but it doesn’t stop me from having a blast and really enjoying my life.”  Children who were used to being judged by their test grades just looked at me in amazement.  Teachers were surprised and said “Even the kids who are usually dozing off or not paying attention in class are listening intently when you talk to them.”

Later in life, my mother suffered brain damage as a result of a traffic accident.

Photo 2 Summer 2003: My mother could not find any desire to do anything and was bedridden. I pulled her out of that state, got her to ride a powered wheelchair, and taught her how to live as a person with disabilities.



She also developed a spinal cord tumor and started to require nursing care.  She lost interest in things and became depressed.  I have two siblings who do not have disabilities, but I was the one who decided to take her in.  We did things like go shopping together riding our wheelchairs side by side.  My mother was able to end her life on a happy note.

 

But when I was just a baby, after finding out that I have cerebral palsy, my mother had once almost tried to kill me and herself by jump off a running train with me in her arms.  People with cerebral palsy around my age have experiences like this once or twice in their life.  Our parents lived through World War II.  It was a time when people were told to have more children and raise them to be good soldiers.  When children were born with disabilities, people said “This could not have been caused by our blood.  It must be the fault of the young wife.”  Such social values caused women to blame themselves.  This drove the mothers to consider killing their children if they were born with disabilities.

We daringly stood up to such eugenic ideologies.  Around the time when we started our activities, in Hyogo prefecture where I was born, there was a government office called the Office to Stop Births of Unfortunate Children.  We protested saying “Who are you to label us unfortunate?”  This society is the one making all the barriers making it difficult for us.  The eugenic ideology instilled in people is labeling us as unfortunate.  In fact a society where people with disabilities cannot live happily is a society where living is made difficult for all people.  Happiness of people with disabilities is actually a true measure for happiness of everyone in that society.  These continue to be our messages even to this day.

 

In 2010, our government created the Obstetric Compensation System.  This system collects insurance premiums from all expectant mothers to insure against cerebral palsy.  Cerebral palsy is singled out in this system.  However, this compensation is made extremely difficult to claim because of all the conditional clauses, and so the only thing this system did was to instill fear among expectant mothers against cerebral palsy giving them the message that cerebral palsy is something terrible.  When I imagine what the doctors must be telling the expectant mothers about cerebral palsy when they explain this system and coax them to join, it make me fearful.

Photo 3. May 5th, 2012:
Hunger strike at the protest tents in front of the Ministry of Economic, Trade and Industry.



 

Then 2011, we experienced the nuclear power plant accident of Fukushima. When people evacuated from the 20 kilometer radius of the power plant, I cannot believe that everyone made it out.  I believe people with disabilities and the elderly who needed assistance to evacuate were left behind.  We hear reports of dogs, cats and livestock that were left to die from starvation.  No one mentions the people with disabilities that were left to starve to death as if it never happened.  However, when you ask the people who evacuated, they all admit that people in fact were left to starve to death.  When I think of the treatment of people with disabilities during this nuclear power plant accident, I think of Auschwitz during the Nazi regime.  Before killing the Jewish people, the Nazis killed people with disabilities.  A similar thing is happening now in Japan.

 

Both the government and the media avoid giving truthful information about radiation.  In this confusing state, people of Fukushima prefecture continue to live there while being torn between concerns for safety and love for the place they call home.  Concern for the safety of food spreads nationwide.  For example, radiation tainted rice is blended in with other rice and is being consumed all across Japan.  We eat things without really knowing the safety of what we are eating.  When we turn on the television we see an endless chain of gourmet programs showcasing delicious foods.  People watching the programs act as if the contamination never happened and choose to ignore warnings by scientists that explain that the contamination of the ocean is spreading all the way to Canada.

 

What is happening in Japan will cause birth defects in newborn babies.  It will also cause children to be born with abnormality in their chromosome causing poor health.  We will definitely see a rise in the number of people born with disabilities.  What we cannot allow to happen is for these lives to be terminated by screening through testing the amniotic fluid during pregnancy or through prenatal diagnosis.  Some people point out that there are now increased numbers of abortions in Fukushima prefecture.  We need to actively fight against the internalized eugenic ideologies.  Our internalized eugenic ideologies tell us that we don’t want to give birth to babies with disabilities, that we don’t want to become disabled, and that we don’t want to grow old because growing old means that we deteriorate.  Simply put, internalized eugenic ideologies manifest in us in these messages we tell ourselves.  People may have different judgments of what is acceptable and what is not.  However, if we allow ourselves to create a world where certain people are worth living and certain people are not worth living, I cannot believe there is any future for human kind.

 

Urgent Action needed!!:WE STAND AGAINST NUCLER POWER PLANTS THAT KILL PEOPLE WITH DISABILITIES!

2012-06-03

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Again, we need urgent action to protest nuclear power dependent policy.

Without any additional secure system to prevent nuclear accidents, government insists to restart  nuclear reactor at Ooi Power Plant which was located next to Shiga , Kyoto, Osaka including metropolitans of west  Japan.  This means there is no safe place  from possible nuclear contamination all over Japan.

We must never forget what happened upon people with disabilities in Fukushima !!

Next time, it  can be upon you.

Sethuko Kuroda , representative  ” Woman from Fukushima”  call for direct action at  METI, the Ministry of Economy, Trade and Industry at noon of   June 7th 2013.  Mr.Fukunaga and I will join this protest.

Let’s get  together at METI !!

________

On May 5th, the last active nuclear reactor went off line, and for the first time in 42 years, Japan is now without nuclear energy!  Hooray!  On this historic day, I was participating in a hunger strike.

A sit-in protest has been on-going across from METI, the Ministry of Economy, Trade and Industry since September 11th, 2011.  Tents are set up and people gather from all over Japan to join the anti-nuclear protest.  A hunger strike was started on April 17th to protest against the restarting of the reactors in Oi Nuclear Power Plant.  The hunger strike ended late in the evening of May 5th when the last active reactor in the Tomari Nuclear Power Plant went off line.  We were just in time to participate towards the very end of this hunger strike.  We arrived on the 4th and left on the 5th taking part in the hunger strike for 24 hours.

We printed out some flyers to handout at the hunger strike.  Below is the content of the flyer.

WE STAND AGAINST NUCLER POWER PLANTS THAT KILL PEOPLE WITH DISABILITIES!

We, people with disabilities, need to look back at the predicament we were put in after the nuclear power plant accident in Fukushima.  After the accident, people were told to evacuate in a matter of hours.  Some people who could not evacuate by themselves were left in their homes to die from starvation.  In hospitals where doctors and nurses evacuated, patients were left behind.  We found out that although the Self Defense Force went in to rescue these patients from the hospitals, several dozen patients died in the transportation process.  Even if they had survived the evacuation, people were then sent to institutions in faraway places.  Some people died in these institutions from lack of proper communication of information or from not being able to adjust to the new environment.  These facts are being suppressed and people generally do not know about these deaths.  Some people can run away by themselves but there are others that cannot.  The government did not consider for these people.  The reality is that many people with disabilities died because of the nuclear power plant accident and the evacuation.  If the world were to find out about these human rights violation and disrespect for life, I am sure the whole world would be disgusted.

There is a long history of disregard for human rights of people with disabilities in Japan.  From around 1968 during the time of the rapid economic growth period, many children with disabilities were killed by their parents.  The parents conducted these acts out of desperation because they realized that human rights for people with disabilities were nonexistent in this society.  When these murders were picked up by the media, the coverage was tainted with sympathy towards the parents and there were massive petitions for clemency.  The social sentiment was that murder of people with disabilities should not amount to a prison sentence.  In Japan, many people with cerebral palsy are survivors of attempted murders by their parents and other heartbreaking ordeals.  No one else would fight for us.  We had to fight for our own survival.  We stood up to society and shouted out “Why do you think you have the right to kill us?”  When I was one and a half years old, my mother was about to jump from a running train with me in her arms from shock of hearing from the doctors that I have cerebral palsy.  If my grandfather was not there to stop this in time, I would not be here today.

50 some years later, my mother suffered a head injury from a car accident.  She became depressed and also suffered a spinal cord tumor.  When she started to use a wheelchair, I was there to support her in this second stage of her life.  I continued to support her until her death.  My life long experience of establishing myself in the community helped her.  I showed her how to live with pride as a person with disabilities and showed her how to get needed support.  My mother, who despaired about the disability of her daughter, years down the line, enjoyed the latter part of her life as a person with disability.  I lead her out of her despair and showed her how to live.  (2009 APHA 139thAnnual Meeting &Expo:http://apha.confex.com/apha/137am/webprogram/Paper213240.html)

Let’s return to what is happening today.  Since the nuclear power plant accident, people are increasingly concerned about the effects of internal exposure.  It is said that “in Fukushima Prefecture abortions are increasing beneath the surface” (Mayor of Matsumoto City Akira Sugenoya).  We also hear that young women of Fukushima say that they cannot get married.  Here also, life is being taken away as a result of the nuclear power plant accident.  This is happening because people fear the possibility of having children with disabilities and having to raise them.  They fear because they see that human rights for people with disabilities are not guaranteed in this society.  Eugenics labels certain types of people as inferior to others and tries to eliminate them from society.  Today, eugenics does not have to be actively instigated by governments and medical professionals.  It has tactfully been ingrained into people’s notions so that eugenics is now disguised as people individually making personal choices not to bring these “inferior” beings into society.  Lives of people with disabilities are being eliminated in this way.

In this rapidly aging society, people are bound to live the latter part of their lives with some disability.  There is much the society can learn from people with disabilities.  We are a valuable resource to society.  What we need to do is to build a society where everyone can enjoy an enriched life regardless of disability.  What we need is a society that can support people with disabilities as well as their families.  Not a society that plays on people’s fears to make people choose to take away life.  This should be the learning we gained from the nuclear power plant accident.  This is the discussion we need to have.  Let’s not waste any more time in this useless discussion of bringing back nuclear power.  Let’s eliminate nuclear power all together and focus on making this society a better society for all.

Japan is now without nuclear energy!

2012-05-24

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On May 5th, the last active nuclear reactor went off line, and for the first time in 42 years, Japan is now without nuclear energy!  Hooray!  On this historic day, I was participating in a hunger strike.

   

A sit-in protest has been on-going across from METI, the Ministry of Economy, Trade and Industry since September 11th, 2011.  Tents are set up and people gather from all over Japan to join the anti-nuclear protest.  A hunger strike was started on April 17th to protest against the restarting of the reactors in Oi Nuclear Power Plant.  The hunger strike ended late in the evening of May 5th when the last active reactor in the Tomari Nuclear Power Plant went off line.  We were just in time to participate towards the very end of this hunger strike.  We arrived on the 4th and left on the 5th taking part in the hunger strike for 24 hours.

We printed out some flyers to handout at the hunger strike.  Below is the content of the flyer.

WE STAND AGAINST NUCLER POWER PLANTS THAT KILL PEOPLE WITH DISABILITIES!

We, people with disabilities, need to look back at the predicament we were put in after the nuclear power plant accident in Fukushima.  After the accident, people were told to evacuate in a matter of hours.  Some people who could not evacuate by themselves were left in their homes to die from starvation.  In hospitals where doctors and nurses evacuated, patients were left behind.  We found out that although the Self Defense Force went in to rescue these patients from the hospitals, several dozen patients died in the transportation process.  Even if they had survived the evacuation, people were then sent to institutions in faraway places.  Some people died in these institutions from lack of proper communication of information or from not being able to adjust to the new environment.  These facts are being suppressed and people generally do not know about these deaths.  Some people can run away by themselves but there are others that cannot.  The government did not consider for these people.  The reality is that many people with disabilities died because of the nuclear power plant accident and the evacuation.  If the world were to find out about these human rights violation and disrespect for life, I am sure the whole world would be disgusted.

There is a long history of disregard for human rights of people with disabilities in Japan.  From around 1968 during the time of the rapid economic growth period, many children with disabilities were killed by their parents.  The parents conducted these acts out of desperation because they realized that human rights for people with disabilities were nonexistent in this society.  When these murders were picked up by the media, the coverage was tainted with sympathy towards the parents and there were massive petitions for clemency.  The social sentiment was that murder of people with disabilities should not amount to a prison sentence.  In Japan, many people with cerebral palsy are survivors of attempted murders by their parents and other heartbreaking ordeals.  No one else would fight for us.  We had to fight for our own survival.  We stood up to society and shouted out “Why do you think you have the right to kill us?”  When I was one and a half years old, my mother was about to jump from a running train with me in her arms from shock of hearing from the doctors that I have cerebral palsy.  If my grandfather was not there to stop this in time, I would not be here today.

50 some years later, my mother suffered a head injury from a car accident.  She became depressed and also suffered a spinal cord tumor.  When she started to use a wheelchair, I was there to support her in this second stage of her life.  I continued to support her until her death.  My life long experience of establishing myself in the community helped her.  I showed her how to live with pride as a person with disabilities and showed her how to get needed support.  My mother, who despaired about the disability of her daughter, years down the line, enjoyed the latter part of her life as a person with disability.  I lead her out of her despair and showed her how to live.  (2009 APHA 139thAnnual Meeting &Expo: http://apha.confex.com/apha/137am/webprogram/Paper213240.html)

Let’s return to what is happening today.  Since the nuclear power plant accident, people are increasingly concerned about the effects of internal exposure.  It is said that “in Fukushima Prefecture abortions are increasing beneath the surface” (Mayor of Matsumoto City Akira Sugenoya).  We also hear that young women of Fukushima say that they cannot get married.  Here also, life is being taken away as a result of the nuclear power plant accident.  This is happening because people fear the possibility of having children with disabilities and having to raise them.  They fear because they see that human rights for people with disabilities are not guaranteed in this society.  Eugenics labels certain types of people as inferior to others and tries to eliminate them from society.  Today, eugenics does not have to be actively instigated by governments and medical professionals.  It has tactfully been ingrained into people’s notions so that eugenics is now disguised as people individually making personal choices not to bring these “inferior” beings into society.  Lives of people with disabilities are being eliminated in this way.

In this rapidly aging society, people are bound to live the latter part of their lives with some disability.  There is much the society can learn from people with disabilities.  We are a valuable resource to society.  What we need to do is to build a society where everyone can enjoy an enriched life regardless of disability.  What we need is a society that can support people with disabilities as well as their families.  Not a society that plays on people’s fears to make people choose to take away life.  This should be the learning we gained from the nuclear power plant accident.  This is the discussion we need to have.  Let’s not waste any more time in this useless discussion of bringing back nuclear power.  Let’s eliminate nuclear power all together and focus on making this society a better society for all.

My September 17th lecture on 17th Congress of Child Neurologists of Mediterranean(CNM) held in Piran, Slovenia

2011-09-28

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  From September 14 to 17. I was invited as a guest speaker by Dr. Milivoj Veličković Perat, President of Organizing Committee,  to 17th Congress of Child Neurologists of Mediterranean held in Piran, Slovenia. During the congress, I talked about tragic environments that a thousands of children with disabilities and sicknesses live with as the result of  the mega earthquake and the Tsunami followed by the  horrible nuke accident in Fukushima.

My allotted time was 15 minutes and there was so much more I wanted to say that I could not fit into my presentation.  Below is the original version of my presentation which is 3 times longer than what I actually presented.

 

The Great East Japan Earthquake occurred on March 11th.  The tsunami reached shore 49 minutes later.  Fukushima Daiichi Power Plant was hit and 7 minutes later lost all power and control over the reactors.  We know now that 4 hours later, the nuclear meltdown had already started.  The first explosion occurred one day after the loss of power.

 

 

Iidate Village lies 30km from the power plant.  On April 22nd it was designated as a Planned Evacuation Zone and the villagers were given 1 month to move out.  By then, the high level of radiation in Iidate Village was a known fact.  The first time I visited Iidate Village was on April 20th, 2 days before the official evacuation announcement.  I saw elementary school children walking back from school.  The children did not have masks or any other forms of protection from radiation.



The radiation level measured on May 11th at 11AM at ground level in front of the Iidate Village Office was 35μsv.



I went to Iidate Village again on May 27th which was past the 1 month evacuation period.  This photo was taken during this visit.  You can see this lady driving back from grocery shopping.  People in the village were going on with their daily things just as usual.  The supermarkets were open selling vegetables grown locally, and people were buying them.  No one seemed to care about the radiation.

I heard about what Iidate village was like from a person who when there on August 29th.  Everyone had evacuated by then and weeds were growing everywhere.  People were allowed to pass through the main road by car to get across to the other side but were not allowed to get out of the car.  We measured the radiation inside the car as we drove through.  Even in the moving car the radiation level was 4μsv.

 

Koriyama City has many temporary housing for people from the evacuation zone.  JDF Disaster Area Support Center for People with Disabilities Fukushima, which is the organization I am taking part in, is also in Koriyama.  We measured the radiation level just outside the Support Center on September 2nd.  At ground level it was 5.67μsv, and at 1 meter from the ground, it was 0.26μsv.  It showed that the closer you are to the ground you are taking in more radiation.  Both children and people in wheelchairs are at higher risk.

 

I spoke to more than 20 people with cerebral palsy who lived in Koriyama.  They all had the same opinion.  “You don’t see it.  You don’t smell it.  Everyone including children are going on with their daily life just like before.  That is why we don’t feel the need to relocate.”  Fukushima Prefecture decided not to ship beef from the prefecture because the cattle have been exposed to radiation.  People in Fukushima are being exposed to the same radiation, and in addition to this, many people are drinking tap water, drinking locally produced milk, buying vegetable grown locally sold at the local supermarket, and some people get their vegetables directly from local farmers.  In autumn, rice will be harvested, and many people will eat this too.  People seemed to have accepted that that is the way things are.

 

Radiation exposure is an attack on the DNA, and small children and expecting mothers are most vulnerable because they are experiencing rapid cell growths.  It is a basic human right to live in a place that does not harm your health, and children should be able to grow up in a place with as little radiation exposure as possible.  And yet, the government has put together a “safety” standard that was easily brought up 10 folds when setting up the evacuation zone to draw a line across Fukushima Prefecture after 3.11 to call one side “safe” and one side “contaminated”.  A safety standard thought to be absurd outside of Japan.  The government limited the evacuation zone so that it did not cover the larger cities in the surrounding area.  The government is providing public support and funding only to the people from the evacuation zone and is denying public support and funding for anyone else wishing to relocate from outside the evacuation zone.  This is preventing even families with small children from getting to safety because even if they know relocation is the right thing to do, many do not have the financial means and resources to do so.  This lack of support is what is driving people to ignore the dangers of radiation exposure.  It is making people give up and accept that this is the risk they must live with because everyone else around them are doing the same.  People feel hopeless and decide to not notice the unsettling realities and look away from the facts.

 

In addition to not providing support to people who wish to relocate, the politicians are also sending out massages to make people believe that the areas outside the evacuation zone are safe trying to bring a false sense of ease to people who feel hopeless and trapped.

 

(Part 2)

JDF Disaster Area Support Center for People with Disabilities Fukushima was set up by Kiyoharu Shiraishi who has cerebral palsy.  This Support Center was set up in an effort to support people with disabilities from the evacuation zone.  Volunteers from all over Japan have come together here.  We have search all over for people with disabilities who have evacuated from the evacuation zone.  I took part in this organization and visited Fukushima several times.



Direct aid by people with disabilities is absolutely necessary.  We cannot let people without disabilities take over the discussion and decision making for people with disabilities.  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.  We need to be there, know what is going on, and think for ourselves.  I was able to gain valuable information and firsthand accounts through my visits to Fukushima.  Many of my findings and insights were only possible because I was able to see things from the point of view of people with disabilities.  I would like to share some of my findings with you.



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.

 

 

 

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, that is, 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.  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.  We found this out because when JDF Disaster Area Support Center for People with Disabilities Fukushima when to look for people with disabilities who required nursing care, there was no one left at the evacuation shelters.  Through our visits, it became apparent that people who use to live in the community were being misled and were led away from the community into large scale institutions.

 

Immediately after the evacuation order, people with disabilities also first moved to their local evacuation shelters.  People with disabilities and families of people with disabilities who were already doing all they could to continue living in the community even before the earthquake, found themselves in a situation where the living conditions at the temporary evacuation shelters were so impossibly difficult that many were forced to return to their houses back inside the evacuation zone.  This situation was so unbearable that the families seriously considering that “May be she/he would be 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.

 

At one point, more than 100 people with disabilities and the elderly who needed nursing care were in the evacuation shelters in Fukushima Prefecture.  Most of these people have been moved to institutions in other prefectures.  I received this information from a physician at the first aid center of the special care evacuation shelter.  This special care evacuation shelter was set up inside a large evacuation shelter for people from the mandatory evacuation zone.  A large convention center complex called Big Pallet in Koriyama City was used for this evacuation shelter.  Before the earthquake, this physician had his own hospital in Tomioka Town, a town near the shore within the 20 kilometer radius from the nuclear power plant.  His town was part of the mandatory evacuation zone, but his hospital was not harmed by the tsunami and he had hospitalized patients.  As soon as the mandatory evacuation zone was set up, communication lines were cut off and supplies stopped coming in.  Some of his patients needed oxygen tanks to survive so when a Self-Defense Force personnel came, the physician asked for oxygen tanks and medicine.  The Self-Defense Force personnel promised to return but never came back.  Some other people came to survey the condition but they also never came back.  His patients died as the oxygen tanks ran out.

 

This physician use to make house calls before the earthquake so he knew where people with disabilities and elderly with nursing care needs lived.  He knew these people individually.  He could name the people who lived just by the shore line.  After the nuclear power plant explosion, no one ever entered that area.  Not even the Self-Defense Force or the Media.  Showing great frustration, he told us that if the tsunami did not take their lives, then these people starved to death.

 

When there were no more patients left at his hospital, this physician went to help out at an evacuation shelter in Kawauchi Village which was outside the 20 kilometer radius but within the 30 kilometer radius from the nuclear power plant.  However, again, supplies stopped reaching.  People who evacuated to this shelter did not expect supplies to stop and so they did not have large stocks of oxygen tanks.  And again, people started to die as the oxygen tanks ran out.  The physician voiced his agony to us.

 

Then he came to the special care evacuation shelter in Big Pallet.  He was an evacuee himself, but because of his experience was respected by the other physicians, and even though he was a volunteer, he had a responsible role.  He did not want to see any more deaths from lack of medical supplies and care, and so at Big Pallet, his policy was to send everyone with nursing care needs to institutions.  His efforts were so successful that by the time we visited Big Pallet there was no one left.  This doctor negotiated with officials so that institutions in other prefectures 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.

 

(Part3)

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.

 

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 earthquake and the aftermath. It is not at all surprising that she fell into a state of panic.

 

The rights of people with disabilities to live in the community are being compromised and “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. People with disabilities, including myself, fought for over 40 years against institutionalization.  During this period people with disabilities created Centers for Independent Living all across Japan to build up communities of people with disabilities exercising their rights to live in the community.  However, when we look at the predicament of people with disabilities in Fukushima, we see that after a major disaster, people with disabilities are easily forced back to a state where our human rights can simply be taken away.  We fear that the history of institutionalization and segregation of people with disabilities will be repeated once again.  I want the international community to know that this is the fight people with disabilities are fighting for now in Japan.



There is so much more that I want to say that I could not covered in this presentation.  I have a website where you can read more on this topic.  Please come to my website and read more about disability rights and the Great East Japan Earthquake.

 

Thank you

 

17th Congress of Child Neurologists of Mediterranean

2011-09-05

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Hello Friends

I have been invited as a guest speaker by Dr. Milivoj Veličković Perat, President of Organizing Committee,  to 17th Congress of Child Neurologists of Mediterranean held in Piran, Slovenia, from September 14 to 17.  During the congress, I will talk about tragic environments that a thousands of children with disabilities and sicknesses live with as the result of  the mega earthquake and the Tsunami followed by the  horrible nuke accident in Fukushima.  I strongly feel that there are lot more things that adults must do to provide suffering children with appropriate and timely assistance for their bright futures.  Actions need to be taken TODAY not tomorrow!

I am looking forward to visiting Piran, a famous ocean resort in Slovenia, as well as meeting many of my dear friends from all over the world.

Masayo

The congress web site:   http://www.cnm2011.eu/hotel-accommodation/

Exposing the flaw of the Obstetric Compensation System From the one who “should not exist” By Masayo Furui (Representative of the Society for the Health and Life of People with Cerebral Palsy)

2008-11-26

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The Obstetric Compensation System came into effect onJanuary 1, 2009.  The system is supposed to “prevent, or lead to the prompt settlements of, disputes by compensating for no-fault liability of medical institutions”.  The government justifies this system by proclaiming it as the savior of the ailing obstetric medical care.  They say that by preventing “cerebral palsy (CP) lawsuits”, this system will reduce obstetrician’s currently high exposure to potential lawsuits and put a stop to the obstetrician shortage.  The people who drew up this system carefully removed the words “no-fault liability” from the naming of this new system.  They must have felt uncomfortable with the word “fault”.  However, in doing so, they have turned a blind eye to the fundamental problem of labeling a disability as a fault.  We need to reconsider this flawed system which is based on such fundamental problem.

What our society has learned and can learn from people with CP

In the early 1950’s, there were only a few medical institutions that could make a definitive diagnosis of CP.  In those days, being diagnosed with CP was more devastating than being diagnosed with a fatal illness. On the train home after being told that I have CP, my mother was about to jump from the running train with me in her arms.  My grandfather was the one who stopped her and told her that “this child is as much our family as any”.

Now, more than a half a century later, my mother, who contemplated suicide with me in her arms, suffers from impairments due to a traumatic brain injury caused by a car accident.  She also has depression, tumors, and dementia, and is in need of long-term care.

During that half a century or more, I, the one people thought “should not exist”, lived as a person with CP in the local community, making relationships with people around me, and saying what needs to be said.  I gave birth to three children and raised them.  Like many others with severe disabilities, I acquired the skills and knowledge needed to lead an independent life; utilizing the technologies and services available to get the care I need.  With the proper skills and knowledge, it is possible to lead a “normal” life regardless of physical abilities.  This lifelong achievement of mine is what my mother ultimately relies on now.  My mother left my father a few years back and is now living with me.  My father had been the care taker of my mother, but after he was suddenly diagnosed with Parkinson’s disease, he did not know what to do.  He felt taking care of my mother was too much for him and started sending her to short-stay nursing homes.  My mother became worried about her quality of life and so, decided to come live with me.

Most elderly people who need care do not know how to live with their disabilities.  Worse still, they were perfectly “normal” all their life, and now suddenly they feel “abnormal”.  This causes embarrassment, confusion, and panic.  This is where I think we can help.  People with CP are like “experts” at being disabled.  We can show them the ropes.  I know that people who became disabled recently will see us and think “I’m not as bad as them”, and that’s OK.  That’s the first step.  We’re used to that kind of attitude.  We can laugh it off.  That’s been the story of my life for more than 50 years.

I have seen people who worked too hard on rehabilitation and made their conditions worse.  I have seen people completely lose self respect from an inferiority complex.  I have seen many kinds of people.  From my experience, the first thing I told my mother was “to be forewarned is to be forearmed”.  I encouraged her to use a powered wheelchair when she was still somewhat able to walk.  My house is mostly wheelchair accessible (it is hard for me to live otherwise).  This environment allowed my mother to continue to do what she can.  Many of the elderly give up trying to use a powered wheelchair, because they cannot get use to them (it’s not as easy as it looks!) and their houses are not wheelchair accessible.  Until recently, despite her dementia and inability to walk, my mother went to her weekly doctor’s appointments by herself.  So today, her daughter with CP changes her diapers and arranges for her daily care, allowing her to live with her family with dignity.

 There has been many recorded cases all overJapanwhere people with CP are taking care of their elderly parents and teaching them how to live with their disabilities.  This is why several researchers advocate that people with CP are the ones who can guide our aging society and teach us how to live with disabilities and to lead an independent life utilizing available resources.

From a young age, people with CP have often been treated as the ones who “should not exist”.  People with CP had to fight against this treatment.  We learned to accept ourselves as who we are and discovered the meaning of life.  This is why, inJapan, people with CP were often the ones representing and speaking out for people with disabilities in various situations including disability rights organizations. Japanis the only country in the world where people with CP have continued to be the driving force of the independent living movement.

After all that we have been through, in fighting discrimination and proving our worth, this new system is trying to single out people with CP and position us once again as the ones who “should not exist”!  This system was thrown together hastily as a quick-and-dirty fix in a half-hearted effort to curb the nations growing concern over the falling birth rate and obstetrician shortage.  It seems the despair people feel towards their future and dejection in their lives has reached a breaking point.

Is CP a 30 million yen burden?

In 1966,HyogoPrefecturewas promoting their “campaign to stop the births of unfortunate children” blatantly calling children with disabilities as unfortunate.  At the time, it is said that there were comments like “while a non disabled person make 200 millions yen during his/her lifetime, a person with CP creates a debt to society of more than 200 million yen”.  These are words that people with disabilities will never forget and that haunt us till this day.  When society tries to eliminate differences, people with CP are always the first to be targeted.

A mother’s cry, “My child does not have CP!  It’s Polio.” shows the devastation people feel at the mention of CP.  The more people fear CP the more the “price” of CP hikes up.  CP has become the scapegoat in this world where private insurances set “prices” on people’s fears in the form of compensation amounts.

The new Obstetric Compensation System tells us that having a child with CP is like drawing a shot straw.  It tells us that because any one of us may be the ill-fated one that ends up with a child with CP, we should all chip in to save the unfortunate few.  And a curse is placed on having CP yet again, as the ones who “should not exist”.

This system claims its purpose is to prevent CP lawsuits, but the fact is, it is just a shameless campaign to say that “CP is a 30 million yen burden”.  It is not the lack of money that causes the endless murders of children with CP by their parents.  It is the shame, devastation and despair towards the children’s future that lead them to such atrocities.  The new Obstetric Compensation System will only intensify these feelings.

Victims of pollution claim that monetary relief alone cannot give victims back their lives.  I actually had a chance to talk with victims of pollution in the past.  They explained that while they continue to feel like “victims” and are treated as “victims” from others and society in general, it is very difficult for them to construct their own lives and move forward.

 

An absurd screening and outrage to humanity in the name of science

In the past, CP was thought to be primarily caused by hypoxia (low oxygen level) during delivery.  This is why obstetricians have been blamed for malpractice.  However, in recent years, it has become clear that hypoxia during delivery count for less than 10% of the causes of CP and that CP often stems from congenital reasons.  Therefore, to claim that most CP is caused during delivery is false.  It has also become known that the probability of CP in full-term delivery is rare and constant.  This means it is possible to predict the number of compensation claims if coverage is limited to these rare cases and build a profitable indemnity insurance scheme.  However, this logic completely ignores bioethics.  What gives us the right to screen out babies based on chromosomal abnormalities, premature births, and low birth weight?

Are we saying that giving birth to these babies, who are not covered by this system are the sole “responsibility” and “choice” of the parents?  Are they not to be supported by our society?  Is this not negligence on the part of the social security system and just a way of pinning responsibility on just the people involved?  Isn’t this replacing medical ethics with economics?  The Obstetric Compensation System is leading us in this direction under disguise.

There are even greater worries for our society.  It seems natural to expect the public to hold some critical opinions, and the recipient of the 30 million yen will endure the brutal yet honest and simple public sentiment “so you’re the one who received the money”, “what a waste of tax payer’s money”.

Conditions of CP are visibly recognizable and therefore are very easy to spot, but it is not possible to tell who was born with a full-term delivery and who did not meet the criteria.  But it is not possible to tell who the recipients are and all people with CP will be pinpointed as burden on society.  With this added stigma placed on all people with CP, especially children with CP, their parents will face further beleaguer, and I fear this may cause increases in the number of murders and child abandonment (neglect) of children with CP by their parents.

In 1970, Kouichi Yokotuka said “People with disabilities or families of children with disability are ostracized from society.  We must understand that ostracism, locking away in an institution, and murder of people with disabilities, all three of these actually stem from the same underlying idea.”  Nearly 40 years later, the world is still filled with the idea of elimination of what they see as being undesirable.

It is time to move towards a convivial society

The government claims that the obstetrician shortage is mainly caused by the fear of being pinned with the responsibility of causing CP.  The problem with this argument is that the basic premise of the argument is false.  It implies that CP is unacceptable, that children with CP “should not exist” in the first place.  If this system’s true purpose is to distinguish non-fault liability from malpractice and this is just a ploy to fund the malpractice investigation, than the government should openly admit that that is what it is trying to do and stop using this system as a guise.  To make CP the epitome of tragedy and to use CP as a pawn for collecting 30 billion yen annually, and then to use the profits from the insurance to create more plum jobs for ex-government officials to run the administrative agency of the Obstetric Compensation System is just criminal.  But what is most unforgivable is that this new system will inevitably cause a divide in the brotherhood and sisterhood of people with CP.

I have lived my whole life as the one who “should not exist” and did not shy away from it.  I stood proud and advocated throughout my life that “there is nothing wrong with CP.”  This system goes against everything I believe in and completely negates me and my life.  If you are serious about achieving a true convivial society and creating a society conducive to an aging population, then please come and talk to the people with CP.  We have learned to survive as the ones who “should not exist”.  We are the embodiment of a convivial society, and we have been sending out our message for 40 years.  If only someone in the government would have listened to us sooner, things may have been different.

What is the Obstetric Compensation System?

This is a system that uses a private indemnity insurance to compensate a sum of 30 million yen when cerebral palsy (CP) is caused during the delivery process.  This system covers the no-fault liability of medical institutions and aims to reduce obstetrician’s currently high exposure to potential lawsuits which is thought to be a cause of the obstetrician shortage.  For each delivery, the childbirth facilities will pay a premium of 30,000 yen to the administrative agency “Japan Council for Quality Health Care (JCQHC)” to join their private insurance.  The childbirth facilities will collect the 30,000 yen premium from expectant mothers (it is included in the total payment to the childbirth facility).  The lump sum payment for childbirth covered by the health insurance system has been increased to off set the price of this premium.  Compensation eligibility is limited to CP with a certified 1st or 2nd degree severity which occurred during normal delivery.  Premature babies and disabilities due to congenital reasons are not covered.  Criticism of this system includes “welfare for people with disabilities need to be covered by the public social security system and not by a private insurance”, and “this can be used as a ploy for securing employment for ex-Ministry of Health, Labor and Welfare officials”.

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