8th World Down Syndrome Congress in Singapore's speech
Subtitle - Everyone is the same human, same life
Aya Iwamoto, Japan
My Dream Came True
My Personal History
Hello, everyone! I am Aya Iwamoto, from Japan.
I am happy to meet you, all of you. I'm very glad to be making
a speech at this conference, too.
First, let me tell you a little about myself. I was born at Kagoshima
Hospital in 1973. My birth must have been a very big joy for my father
and mother. However, I developed jaundice and was put into an incubator
for about two weeks. When we were leaving hospital, the doctor told my
mother that I had Down's syndrome. My mother says that she can't remember
how she got home after the shock of hearing that.
I had complications: heart trouble and pyloric stenosis. Pyloric
stenosis is a narrowing of the pylorus, which is the outlet from the stomach.
This makes it hard for any food, even milk, to leave the stomach. As a
result, when I had a cold, I often vomited my food like a fountain, even
my mother's milk. I would vomit repeatedly when I was lying down, and my
mother often had to sleep leaning against the wall while she was holding
me. I went to a Montessori Catholic kindergarten when I was a child, and
I enjoyed the comfortable, carefree ennvironment there. But before I entered
an elementary school, I often had to sit down and rest. An examination
at Kagoshima University Hospital showed that I had hypothyroidism, a condition
in which the thyroid, which is an organ located in the front part of the
neck, makes too little thyroid hormone. As my symptoms were becoming more
serious at that time, we moved to Hayato, a town with hot springs and very
pleasant surroundings, to take a rest from Kagoshima City. I was in ordinary
classes through elementary and junior high school. I passed an entrance
examination for an ordinary public senior high school and graduated three
years later. I then entered Kagoshima Women's University, which was my
dream, and have now graduated.
Taking part in the 3rd Asia Pacific Down's Syndrome
I've changed a lot since I took part in the 3rd Asia Pacific Down's
Syndrome Conference, held at Auckland, New Zealand, as a representative
of Japan. As one of five
members on a panelist at the conference, I spoke in English about my experiences.
I was very nervous when I found myself standing on the stage at that international
conference, but I was able to finish my 15 minute speech in spite of feeling
all through the speech that I couldn't breathe.
When I received a standing ovation, I felt very happy. It really boosted my confidence, and I'll never forget that experience as long as I live.
The following is a part of my speech.
I graduated from Kagoshima Women's University in the Department of
on 20th March this year. The commencement was the best day of my life.
I will never forget it.
After representative got a degree, the President of Kagoshima Women's
University(the present: Shigakukan University), Mr. Sunagawa congratulated
the graduates. He touched on me
in this speech,“It is a very wonderful that there is Miss Aya Iwamoto in
the graduated students. Her intense figure made a deep impression and courage
on many school-mates.
That must gave a hope and encourage people who have same handicap. Her effort is wonderful.
It is our pride to assist her studies.”I was deeply moved by his
speech, and tears
came to my eyes. My parents shed in tears, too.
It's my dream to become a librarian in a quiet library. I am studying French, too. I
want to go and see the pictures in Le Musee du Louvre and Le Musee d'Orsay
My hobbies are listening to music and looking up words in the dictionary.
Today, I am going to talk about my personal history book.
My parents published “Hashirikitareyo-Akoyo”(it means,“Come to Mama, Dear ”subtitled
“A child with Down's syndrome weaves her dreams and goes to university”) on 25th January, 1998. My mother and father wrote the book about the period from my birth to my entering Kagoshima Women's University, and I wrote my impressions of the book at the end.
I have been sick since I was born, and my parents have had a lot of trouble.
I grew up without knowing much about my illness. When I was in my
second year at university, I learned for the first time that I have a handicap.
While I was watching a program about Down's syndrome on Japan's NHK television,
I asked my father about it and he told me I have Down's syndrome. I was feeling about it faintly,
but it was very shock for me. My mind
Then I saw my mother writing about my illness on a word processor.
It really surprised me, and I didn't want to believe it. I was very sad.
I learned that my parents were going to publish my personal history in a book, making
my illness public and tell about our family in the book. I worried about
it, and I didn't want
them to reveal my illness. I cried sorrow.
My father and mother said,“You have done wonderfully. Don't be afraid.
Take pride in yourself”
I talked about my worries to Dr.Tanaka, who works at the Child General
Consultation Center in Kagoshima City. He said,“It is very important that
you tell about your handicap.”At first, I didn't think I could tell everybody
the truth, but I was encouraged by his words, so I
made up my mind not to try to hide the truth.
Also, my relatives and my parents' friends encouraged me.
I'm not afraid any more, and there's no need to hide the truth.
I want many people to read this book that my parents have published.
I'd like them to understand the feelings of the handicapped.
The book has finally been published.We got a lot of letters and telephone calls from
all parts of Japan. They said "I was deeply moved by your book”,“You
gave me courage.”, “I cried reading this book”, “I found hope for the future.”
and so forth.
We were encouraged by their messages. I think that it was a very good
thing that my parents published this book.
I also hope to work with handicapped children. I have a lot of dreams.
People have a shallow view and prejudice against Down's syndrome
in Japan now.
It's a pity.
Life is short, but precious. That's why I won't give up my hopes and
I am grateful to the many people who helped me, and I want to say
to my parents,
“Thank you for giving birth to me.”
My talk and exchange trip
I have continued giving lectures and taking part in exchanges all over Japan since
I graduated from university. I've given a lot of lectures, in junior colleges
and at nursing school festivals. After the lectures, people in the audience
have written their impressions in very moving essays. Their words were
simple and kind-hearted, and they encouraged me and moved me deeply. Many
people have attended these lectures all over Japan. There were
1500 people in attendance just in Okinawa. Senior high school students
in particular attended, and they listened intently to my speech. After
each lecture, the lobby was crowded with students, and they asked me about
everything. Recently, in the Shimin-Kaikan hall of Fukushima Prefecture,
the audience included students from junior high school, senior high school
and a nursing school. Writing their impressions of the lecture, they mentioned
their own ideas and goals in life right now and how their points of view
on Down's syndrome, handicaps, prenatal diagnosis, etc. had changed. I'm
so glad that young people show such understanding. Many people have written
over these five years, and I have met many wonderful people, too. It has
been an irreplaceable fortune for me. I'd like to share with you one mother's
words which I will never forget.
She said “Today, I learned about your speech from the newspaper and
was able to
attend your lecture. My child has Down's syndrome, too. When we were first
told of it, we were greatly shocked.
We were at a loss what to do and how we could raise our child. Actually,our child
is in hospital,and we aren't raising her,but I was listening to your talk today and I felt a little relieved to hear what you said. On raising children, it should make no difference to the parent whether the child has a handicap or not. I want to accept my child as she really is; I won't compare her with other children, I will just bring her up naturally. This is my idea today. I think we ourselves, the parents, can continue to grow, by bringing up our children, by finding things of value in our children. Today was a wonderful day.”
Everyone is the same human, same life-About Prenatal Diagnosis-
When I made a lecture tour of Japan, I met many people who had been
social discrimination and prejudice. I met a mother who has a baby with
Down's syndrome in Shimane. Her baby has a serious heart disease and when
she was trying to arrange for an operation, the doctor of a famous university
said,“It is useless to operate on your daughter. Children with Down's syndrome
don't know their parents' faces, anyhow.”She was very shocked
at what he said. I thought it was very terrible, too, when I heard about
it. Her mother told me
in tears,“I saw you on a television programme, and I was so pleased!”
I became a member of Japan Down's Syndrome Network (JDSN) and came to know about
the problem of prenatal diagnosis. I also learned of the triple-marker test, which tests for three handicaps, including Down's syndrome. The problem is that such procedures deny people with Down's syndrome the right to life. Whether one has a handicap or not, all people are equally human, with the same right to life; there is no difference in the importance of different people's lives. Human lives are equal in importance. Many specialists, doctors and the parents of children with Down's syndrome started a movement to submit a petition to the Ministry of Health and Welfare (the present : Ministry of Health, Labour and Welfare)'s committee. I also submitted the petition two times myself. No person with Down's syndrome had ever presented this petition before. After one lecture that I gave, a third-year senior high school student wrote on her questionnaire the following very moving reaction.
She said,“I have been thinking about prenatal diagnosis. I felt that
unborn children can't even think for themselves; whether they have handicaps
or not, they don't even realize that they are alive. But then Miss Aya
said, 'Thank you for giving birth to me,'my old way of thinking completely
disappeared, and I felt very ashamed of myself.What is important is not
to get rid of handicapped children, but to find a way to live well with
them. I need to think about how handicapped children can have good lives.
From now on, I hope to show the people that I come
in contact with how precious they are.”I was deeply moved by her message.
I hope many people
will come to feel the same way.
My Dream Came True
When I was a child, I could see from my house the white buildings of Kagoshima Women's University high on a hill, and I longed to go there. I had a dream of entering and graduating from Kagoshima Women's University. I was able to realize this dream. I studied about children's rich imagination, human kindness and love. These became the theme of my graduation thesis. Next, I
had a dream of trying to do something connected with these interests of mine. When Dr. Yukihisa Matsuda, a pediatrician, asked me,“Aya, could you put my Maho no Drop into English?”I had both high hopes and some uneasiness. Still, I decided to try to translate the book into elementary English in order to move closer toward achieving my dream. I was able to translate this book into English, and it was published in October, 1999, as MAGIC CANDY DROP. This achievement brought me great pleasure.
Today, I'm going to read a part of MAGIC CANDY DROP.
I'm studying French at university now, and I'm interested in French
culture. I want
to travel around and visit museums, too. It has been my dream for many
years to travel to France with my family, and we were able to go there
in June, 2000.
I visited Le Musee du Louvre, Le Musee d'Orsay and Le Musee Marmottan,
a collection of the works of Monet, my favorite painter. Paris is a very
beautiful historic town. In January, 2001, I published my travels in Paris
as“Yumetsumugu Aya”(It means Spinning Dreamer Aya) jointly with my mother.
In the same year, I got a request for a translation of a Canadian fairy
tale, How Smudge Came, from the Akane Shobo publishing company in Tokyo.
I was able to publish a second fairy tale book in June. I felt highly honored
to be asked to translate this picture book, written by such an excellent
author, who has received an award in Canada for his writing.
Another dream of mine is to translate and a make picture book for
a French fairy tale so that it could be read to and heard by many children,
especially handicapped children. I also still want to be a librarian.
Let me mention one more of my dreams. I want to translate into Japanese some interesting children's picture books from Singapore.
Finally, I want to say once more to my parents,“Thank you for giving birth to me.
”And I hope peace will come to the whole world.