World Down Syndrome Day Conference at United Nations Headquarters
Inclusion in early childhood as a pathway to inclusion in society as adults – living, working and participating in community. Examples, case studies, testimonials.
（全体動画へのリンク）UN WEB TV (Part 2) 5th World Down Syndrome Day Conference (2016) （石川スピーチは1時間4分50秒くらいから）
Social and Political Participation of Persons with Intellectual Disabilities–Self-Advocacy for Inclusion
Thank you Madam moderator. It’s a great honor for me to speak at this very important conference celebrating World Down Syndrome Day.
First I would like to show you a picture of Shoko KANAZAWA, and her work of art. She is a famous calligrapher with Down Syndrome from Japan, who was on this conference last year, as ambassador YOSHIKAWA mentioned this morning. Self-advocacy takes many forms. In the case of Shoko, perhaps calligraphy is a form of her self-advocacy.
Now let me share with you a personal story of a young boy and self-advocacy or rather lack of it. In fact, this is a short story of how I became blind. With a first year of primary school, long years ago, I had already lost eyesight in my left eye but could still see with my right eye. I was low vision. This is why I would always sit in the front row right in the middle of the inclusive classroom.
In my second year of junior high, I got diagnosed with an eye disease called retinal detachment and spent about half a year in the hospital to be discharged. Doctors after all gave up operation.
When I was discharged they told me NOT to take part in physical exercise classes, because my eye disease was not cured and one strong impact could make me blind.
When you cannot do PE., you are expected to sit through it. If you are not there you don’t get the credit for the class. So every time, every class I had to be there.
And that is when it happened. Me and another boy who didn’t feel good on that day were sitting through a PE. class. Suddenly our PE. teacher came to us and said: The two of you, see the girls doing folk dance over there. Go and practice with them.
The boys were playing football on the left side of the field. And the girls were dancing folk dances on the right side.
At first we could not believe our ears. Thinking he was joking, we stayed motionless. Then we knew he was seriously expecting us to go folk dancing. He was a young teacher, a star hammer thrower, a man with an amazing physique.
For a junior high school boy wanting to prove to everyone and to himself that he was a man, to be sent to join a group of girls is nothing but humiliation. So I didn’t obey him. The teacher scolded us. Tears started rolling down my cheeks, because I had no words.
I went on to high school. I still had to sit on the bench each and every PE. class. PE. teachers are strange breed. They don’t like bench-sitters. One time a teacher came up with the idea that if it was just warming up, I should be perfectly OK. I couldn’t say no.
I wasn’t participating not because I didn’t want to but because I was told by the doctors to avoid physical training. I declined to dance to insist I was a boy. And to prove my value I agreed to do warming up. Once I started, I couldn’t resist the temptations, so I ran, jumped, and even did Judo. In three months my right eye was gone.
I was risking my eyesight to prove my value. It was a dangerous game with high stakes. I had to spend two following years in the hospital. Who played such a stupid game? It was me, and nobody stopped it.
When people have no ideas to help them, people cannot be courageous. That is why I believe self-advocacy is essential.
I would have been able to protect myself from the power, if I had been exposed to the idea of self-advocacy. And this applies to girls and boys with disabilities in general, perhaps more so to those with intellectual or learning disabilities because of communication challenges they may face.
All children, including those with disabilities, need to learn about their human rights. As it might be more difficult for children with intellectual disabilities, including those with Down syndrome, to express their views in some situations, it is all the more important for these individuals to receive the necessary support and reasonable accommodation and above all exposure to self-advocacy.
Another and last example of inclusion and self-advocacy in decision-making comes from the independent monitoring mechanism of the CRPD in Japan, which just completed giving inputs to the initial report. I chair this Commission on Policy for Persons with Disabilities, which includes up to 30 representatives of disability communities, local governments, industrial circles, labor union, scholars and royals.
It has been my learning experience to work with self-advocate members. As reasonable accommodation, our Commission has provided pre-meeting briefings and easy-to-understand materials. It is really encouraging to note that international organizations, including World Bank and WHO, have started to provide easy-to-understand versions when they release disability related documents.
In our Commission, self-advocates have accessibility cards, developed by Inclusion Europe. We call it yellow card, saying please speak slowly and easy-to-understand manner.
Diversity gives more power to our Commission. Currently our membership lack self-advocates and I do hope that in the next term starting soon, they will come back to our commission. Their contribution is essential. In this connection, at the international level, I truly look forward to working with Robert Martin, a self-advocate from New Zealand, who is also running for the CRPD Committee.
In closing let me come back to the beginning of my presentation, when I showed you Shoko’s calligraphy.
In fact, you might have wondered how I appreciate her art. With the tactile printing technology, I could touch and feel her art. I will circulate tactile printings of Shoko’s calligraphy to the folk. Please touch them.
I can appreciate or at least can enjoy visual art a form of self-expression and self-advocacy. I hope to continue to work with and learn from self-advocates and their family members.
Thank you very much.
21st March, 2016