Thursday, March 31, 2005

One Last Thought

I've been watching the bitter debate about Terri Shiavo with some interest, as I said in a previous post.

Now that she has died, I see no end to the debate, but I just wanted to post a few last thoughts.

Most, if not all, of the people in favor of the removal of her feeding tube (I've tube fed a kid's not as scary a thing as people think it is) have said how they wouldn't want to "live like that."

So, speaking as the sister of an adult (officially, now, since he's 18) with a cognitive disability, and the teacher of kids with moderate to severe/multiple/profound disabilities, I just want to say...

...not a single one of those kids would ever say that their life wasn't worth living. Not a single one of those kids lived life in a self-pity ridden, anguished stupor that people seem to think that severe disability entails.

It's not really a cliche to say that attitudes are the real disabilities.

It's really not.

I've seen a child trying to tell me he was hungry getting so frustrated that he bit his arm. But once I realized what he was trying to communicate, and taught him to sign "eat," he doesn't bite his arm out of hunger any more.

Once my reaction changed -- once I understood what he was trying to tell me -- his frustration went away.

Yes, C. has challenges. Yes, he gets frustrated sometimes. But I've also seen him run up to a favorite adult, hug them, and try to kiss them (he can't pucker his lips, so he just kind of puts his lips on your face). I've seen him laugh when he hears music, or when he runs, or when we spin around together in fast circles.

I knew another little boy who had pretty severe physical disabilities but little or no cognitive challenges. I watched him, one day, try to tell the adult that was supporting him in school that his stomach hurt. He used his Dynavox (a communication device that's a touch-screen computer with voice output), facial expressions, his own signs, and body language to say "ow!" The guy with him was oblivious, and after a few minutes of this, I couldn't take it anymore, and went over and intervened.

Once I ascertained that M's stomach hurt, I told him I'd get E. to take him to the bathroom. He said, "Uh-uh." He didn't speak verbally often (most people couldn't understand it, due to the CP) but he had no (uh-uh) down pat.

Again -- it's all about the reactions of people around the person with a disability.

I saw, and understood, his communication -- which made him trust me rather than the guy who didn't hear his Dynavox saying "my body hurts" over and over.

Yes, it's a challenge sometimes to ensure that people with disabilities can communicate (I knew one young lady who would indicate pleasure by holding her head up and kicking her feet on her wheelchair trays) but the main source of frustration I have seen in all these kids, young adults, and adults comes not from the disability.

It comes from our reaction.

A life with disability isn't inherently not worth living.

Whatever you think of Terri Shiavo's decision (assuming that was her wish, as stated by her husband) -- that's what I wish we would all learn.

You know -- Tiger Woods would probably think life without golf is not worth living. Michelle Kwan would probably think the same about ice skating.

Do you feel terribly deprived by not going golfing today?

Life without walking, or life without verbal communication, or life without any number of things that people think disability steals -- it's not's just different.

My life is not less than Tiger Woods because I couldn't hit a golf ball accurately if my life depended on it. It's just different from his.

We all have talents.

C., of whom I spoke before, is very good at running, and has big, beautiful, very communicative brown eyes.

M., of whom I spoke before, has a fantastic sense of humor, and the most adorable smile you've ever seen.

A., one of my students this year, has perfect pitch.

Patrick, who has milder challenges than the students above, knows he has a disability. He knows it's called "Down syndrome." He knows that his girlfriend has Down syndrome, and that it was at least partially responsible for her needing brain surgery.

He knows that because he has Down syndrome, he has to work harder to make other people understand him.

While he may get frustrated sometimes (but then again, I'd be frustrated if someone didn't understand "absolutely-plain-just-the-meat-and-bun" and tried to offer me a cheeseburger too)...he is, in general, a happy guy.

Don't get me wrong -- the image of the happy-go-lucky person with Down syndrome is an oversimplification (an extra chromosome, no matter what people say, doesn't make you huggy) -- but he enjoys life, and he enjoys the people in his life that treat him as Patrick...not as "that kid with Down syndrome."

And, you know -- he has the whole staff of his Carl's Jr. charmed, along with several waitresses at Carrows, a checker or five at Ralphs, and servers at my Dennys and Dominoes.

He has more acquaintances and friends in the community than most adults my age.

You just ask him if his life isn't worth living.

None of their lives is unending torture, and they would disagree vehemently with that.

So whatever you think about the Terri Shiavo thing, just take a moment to try to realign your perceptions.


I know several kids that just want you to be their friends...and not to judge their lives based on what you think they're missing.

No comments: