Wednesday, January 17, 2007

Silence about Disabilities=Shame

I thought that attitudes towards disabilities were changing. I thought that what made things awkward, about talking my son was that for a time he was not only disabled but in danger of dying. The infant death taboo is a whole other post.

But when I read this article "What's the greatest challenge of having a daughter with autism? Telling people about it. , It makes me sad. As someone who grew up with a movement disorder, it's the same attitude my parents have. My parents occasionally talk about "my shake" at home but they don't use the proper term or say I had a disability. I don't actually shake at all. I jerk. My parents very rarely talk about it to others. Like the writer of this article, they're not ashamed of me but hope they can hide my disability from others. That people will only notice my good qualities.

Unfortunately, the world notices differences. As a child other kids called me names and people stared. They sometimes stare now. I don't have any problems with speech like Paige, but as a child I didn't know the words to defend myself. I grew up feeling ashamed of my disability. My parents occasionally told me they were proud of me, but I interpreted their silence as shame about my disability. Some people felt awkward around me not necessarily because of my disability but because there was this elephant in the room that we never talked about.

Parents think they're protecting their children by not talking about their disabilities, but really they're leaving their child unprepared for the world. For a time I was very angry with my parents.

Now with a son with an unrelated physical disability, I understand the awkward silences. I understand the looks of horror. Sometimes people's eyes fill with tears. Sometimes people spill their life story. It creates odd moments sometimes tender and sometimes so awkward or maudlin I wish I could just leave.

My son has a giant vascular tumor in his left arm that is currently in remission. The details are horrifying. He has multiple delays and his left arm barely moves. But those are his problems. I want people to see my son as the bright, social boy he is, and not his disabilities. However, his arm is a part of him as surely as his sunny smile.

For a time I stumbled around, lost in medical jargon. I didn't have easy words because my son has a disease that no one has heard of. No one understood me. Later, I realized I needed to keep it simple and use easy words like "tumor" "speech delay". Most people don't actually care about the details. They just want to have some understanding of what they see right now.

So I talk about it in a matter of fact way when things come up. For example the other day I was talking with friends about first haircuts. I said I put off cutting my son's hair for far longer than I prolly should have. I was afraid he might go through another round of chemo and steroids, so why cut his hair when it would just fall out? My friends have gotten used to this kind of talk and it's just part of the conversation.

I won't lie. I have lost some friends. Some friends who say "it's too hard." "why do I have to talk about this stuff?" aka my life or simply avoid me. You don't know who can handle the truth and who doesn't. It has surprised me who left and who stayed. But I would rather have friends who truly accept and appreciate me and that includes my son.

Everyone has good days and bad days. My bad days include trips to the ER. My good days include one of the happiest people I know. I wouldn't trade my son for anything. And so every day I model for him what I wish I had when I was growing up.

No comments: