I wrote this ‘non academic’ abstract straight from my heart, as a mother of a mentally retarded (and very social and sweet) nine year old. The theme “the art of belonging” struck me, because it is something I experience every day of my life. Apparently, struggle is necessary to make my daughter belong in this high standard society, every day. As long as we live, we will fight for it.
My daughter was described as ‘a cute little toddler, with an uncomprehended mental retardation’. That was more than 7 years ago. Now, the actual description is: ‘a cute 9 year old with a mental handicap. Her IQ score is estimated at 35’.
Before I was the mother of a mentally handicapped child, it was easy to say, that ‘ofcourse handicapped persons belong, like everybody else’. And I just went on with the things I was doing. I say this to make clear that if you’re not in any way related to handicapped people, it is hard to understand, what it actually means in daily life. To really make them belong, different kinds of measures are needed. It is not plain sailing!
The moment my daughter does the things any (‘normal’) child does, the problems begin.
• My daughter goes to a specialized school. This school is situated in Utrecht and we live in Houten, therefore she needs special transportation. There the bureaucracy starts: the city council has to decide (every year!) whether my daughter is allowed to use special transportation to go to school.
• My daughter likes to play outside, but it is impossible to let her play without constant guidance. So every two weeks we bring her to a special place where she can safely play with other children. Before we could bring her there, we needed special authorization (every 2 years).
The moment you want your handicapped child to do the things all children normally do, first you have to climb the bureaucracy mountain. For me the underlying message is: your daughter does not belong, she is a problem, she costs money.
My daughter as a problem, isn’t that the opposite of belonging?
So many more things I could write down about the theme “art of belonging”. On different levels we feel that “belonging” is not a natural thing for ‘handicapped people’; ‘normal‘ people’ staring at us, at her, all kinds of questions we are asked, and some of them hurt: “have you ever thought of ending her life, after she was born?”. “Isn’t it better for her to stay in an institute for mentally handicapped people?” So much ignorance! And, the choices of politics: no more school swimming for mentally handicapped, no more school camps, no more specialized gymnastics instructors for handicapped children, so much difficulties with transport from home to school, and so many other things.
I do not know much about the situations in other countries, but in the Netherlands, we feel a ‘rough wind’, as soon as we speak and try to negotiate about facilities which are needed to make participate handicapped people in society, so they belong.