March, 2013年

No One Can Be Labeled as Not Worth Living


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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.


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