Friday, August 03, 2007

Just One Of The Dwarves, Please

"He has Down Syndrome."

"Oh, I see."

It seems that often, once you say, "Down Syndrome" an entire image is supposed to form in your mind. Like you've learned the most important thing about someone and now have a pretty good idea of who they are. I just finished reading a book wherein you find out near the end that one of the main characters had a child with Down Syndrome and, at that point the author expects us to 'understand' something about that character because of how he reacts to the child. It's an easy ploy, a way to telegraph something about that charater to us.

But it doesn't work.

People with Down Syndrome have as much variation, one from the other, as any other two people do. Some drive, some walk. Some talk, some struggle. Some smile, some cry. Some are skilled, some need lots of help. People don't wear Down Syndrome like a tailored suit - one size fits all. I made a comment about this to Joe, telling him I liked the book but thought that the inclusion of Down Syndrome that way was a cheap trick.

Joe nodded, like he does when I'm on a tanget.

"What? No What?" I pressed him.

"You do the same. You always write about people with Down Syndrome like that guy who we saw drive the car, you don't much write about guys with Down Syndrome like the guy who always waves us off at your office. If people only knew about Down Sydrome from your blog, they'd be surprised to find ... what was your word ... variation."

"Why do I even have these conversations with you, you just don't get it!!"

We let it drop. The weather is extremely hot. We don't have air conditioning. The radio said either avoid heat or avoid conflict - everyone is edgy. So, I let it drop.

Then Joe picked me up from work and I saw the guy he was talking about. He's got Down Syndrome and though when he waves us off he has a ready smile and wave, he doesn't have that joie-d'vivre that othes with Down Syndrome are purported to have. His face looks purpetually startled, like he's constantly discovering something vaguely unpleasant about life. If he met the seven dwaves it would be 'grumpy' that he had a beer with. Or, so that's my impression.

It's also my impression that he has a whole life, goes to a day programme, is involved in the community. But he ain't ever going to drive a car. He's not going to hold down much of a job. If you are looking for someone with Down Syndrome to make your day brighter like a smiling Buddah, you're looking in the wrong place.

I wonder why people, and writers like me and the other guy, use people with Down Syndrome in ways that both break stereotype by encouraging stereotyping. Why is there a burden put on someone with a disability to 'rise up and above' their disability? Why can't someone just go about having Down Syndrome without having to brighten the world for others? Why does someone already carrying the weight of disability also have to be lumbered with the job of inspiration? This guy just goes about his day. Does what's required of him. Smiles only when he wants to. Grumbles when something goes wrong.

There were seven different Dwarfs but we want only one picture of disability.

Lights. Camera. Inspire!


Belinda said...

This is waaaay too big a topic for me to put my thoughts into any form of coherence--let alone stop myself from going off on a tangent. I do have thoughts though--and I'll be thinking them all day as I drive off to my next place to be. And I hope I can put them out there soon. Thanks for doing what you always do best--making us think! And--thanks Joe! :)

jennifergg said...

Yes, a stereotype, even a "nice" one, is a way of keeping us from truly seeing people. Including people with Down synrome.

ballastexistenz said...

I have seen a bumper sticker that says "I am not here to decorate your world."

I want one.

Anonymous said...

sorry Dave, I don't agree with you. I think there is a place for emphasising what some people with downs syndrome can do. I remember talking to a mum who when her daughter was born 18 years before had been told she will not be able to walk, talk, will be a "vegetable" and have ginger hair (since when was red hair a disability?)all because she had downs syndrome. Her real disability if you ask me is that folk expect her to be mild, gentle and obedient and can't understand a strong willed, man daft teenager who dresses "inappropriately."

The general consensus seems to be that people with downs need constant care, are burdens on society and do not contribute and that needs challenged. Your blog does that, I like to be reminded of what can be done if society lets them be individuals and stops labelling.

Anonymous said...

Thank you, thank you!

I think this is just a fine balancing act -- we want to disprove the assumptions about people w/down syndrome (which are huge, and negative), so we tout the achievers, we show all the things they do, but in doing so we're leaving others behind, denying who they are.

Oh god, and I hate the "they're little angels" thing, like my kid's life purpose is to inspire others, just by his existence..

..thank you for writing this. Of course you should write about the guy driving the car, and the guy who got married, and all the other people who jar us out of our stereotypes. But keep on writing about the guy at the office, too.

Stephanie said...

I am tired of the stereotypical assumptions of people with DS. My 2 yr old has DS. He is brillant. So is my 6 yr old who is "typical."

I have people coming up to me all the time teling me he is a gift from God, that I was chosen for this child, that he will be happy all the time....
I thought all children were gifts from God, not sure about the chosen thing and Reese throws some serious tantrums and has a range of emotions as we all do. By no means is he always happy, he is like any kid.
I also have ignorant poeple come up and make flabergasting, jaw dropping comments. like the lady at Target the other day told me that I had the cutest Retard she has ever seen. I have had people call him a mongoloid. I have had people give me hugs and say "I am so sorry for your burden." Burden?? What burden? Yeah, there are things that I have to think about when I look into his future. However , both my children have arrangements for them. (Reese has a few more complications as I have to contemplate government issues with his disability.)
Go Dave Go. Rock the stereotypes however you can. You are an expert on disability, on the needs of the disabled. There is no Blanket that covers it. Those who are labeled are as varied as those who are not. Everyone is an individual first and foremost.
Sorry if my last bit is a little off, distracations of a running toddler and trying to type....

Jenny said...

I hope you don't mind me asking this. Is it 'Down Syndrome' or is 'Down's Syndrome' okay? I thought it was always the first. I hate it when people say someone has Downs. It just doesn't sound right, but I could be in the wrong.

stevethehydra said...

Eponymous syndromes (ones named after people - John Langdon Down, Hans Asperger, etc) tend to have the 's in British English and to not have it in US English. Not sure about Canadaian, Australian, etc...

I agree with the "balancing act" thing. We Aspies get the "must have an amazing memory/incredible knowledge of some subject/amazing maths skills" thing, which is kind of, sometimes, maybe positive in that it encourages people who might otherwise dismiss all disabled people completely see at least some of us as having at least some good qualities, but is also very disempowering to those of us who actually don't have those things... the assumption that people with Down's are always happy/love everyone/etc seems broadly equivalent to me...

stevethehydra said...

Oh yeah, other thing i wanted to say (was interrupted) - i feel similarly conflicted about the "examples of disabled people doing the stuff everyone does" kind of thing. On the one hand, it's a reminder of everyone's common humanity, it's challenging people who don't see us as their equals to get their heads round us actually being our equals, etc. On the other hand, one of the (if not the) main things about being disabled is, well, we don't do the same things as everyone else - and need to be accepted for who we are regardless of that fact...

(now thinking of the line from that Pulp song, "we don't look the same as you, and we don't do the things you do, but we live round here too"...)

Equality doesn't mean everyone being the same. The true challenge IMO is to fully accept and embrace diversity - that there are people who can do paid work, people who can't do paid work, people who can drive, people who can't drive, people who have sexual relationships, people who don't have sexual relationships, etc, and none is more or less a person than any other...

All 4 My Gals said...

Hey Dave,
Just catching up with you. I copied an article from the DS News (NDSC's newsletter) written by a brother of a young man who has T21. I thought you might like to read it.

Anonymous said...

i think the general literary "skeleton" of "god" was built off of a very rough description a highly functioning person with cerebral palsy before they knew what the heck it was

chinese buddah statues look suspiciously like someone with cerebral palsy

this "god" person people keep talking about most likely has cerebral palsy