Special needs parents: our own worst enemies?

October 29, 2011

through a glass door, a wheelchair is visible

photo courtesty of Tom Watchel, via flickr

Once, I heard a woman say that she was asking her son’s school to remove the post between their two front doors to accomodate his wheelchair. “The other day, his pinkie got stuck against the doorframe,” she said, cradling her own finger. “It made a mark.”

Now the idea of this kid’s little finger jammed against the door is painful, but wait–this was a front door to a school, wide enough for a wheelchair, probably wider than most of the doorways in their home. Why was his finger getting jammed? And what about all the other doorways he would have to go through, every day for the rest of his life?

I can relate to this story, because it happens to Chloe all the time. Going through doorways can actually kick her dystonia into gear and make her throw her arms out at exactly the wrong time. But was I asking our school to spend thousands of dollars replacing their doors to accomodate her? No.

At the time I heard this story, my husband was teaching at a public school, trying to help high school kids who had trouble reading. For many of these kids, financial, emotional and societal obstacles stood between them and an education, but was the school going to pay thousands of dollars to make it easier for them to get through the door?

News flash: schools don’t have a lot of money, and, for teachers who see dozens or even hundreds of needy students every day, a demand like this must sound frivolous. And this could contribute to the fact that special parents don’t always have the, uh, best relationship with their public schools.

Now don’t get me wrong, I believe in equal access: wheelchair ramps, special equipment, accomodations on homework and tests, all that good stuff. My husband and I demanded the school hire a full time paraprofessional without a twinge of guilt, because that was the only way Chloe could fully participate in a regular classroom.

But I think the low tech solution is often, maybe even usually, the best, and many parents never look for the low tech solution, if they think they can force someone to pay for the expensive one.

I used to press my fingers against Chloe’s arms as we went through doorways, until I realized that we had a great “teachable moment.” Why not use this as an opportunity for her to take responsibility for her own body? Now, we always tell her to pull her arms in when we go through a doorway. It took a lot of practice, but now she does it almost every time.

I don’t know anything about this woman’s son. I don’t know if he has the physical or mental capacity to move his own arms out of the way as he goes through a door, but it’s possible that no one ever thought to ask him to do it, and maybe someone should.

From watching Chloe, I know that kids with disabilities will put up with a lot if they don’t think they have a choice. Someone who doesn’t know he has the power to move his arms will just take the bruises and scratches, until another person figures out how make them go away.

But if you can empower him in that situation, even just by talking about it and helping him hold his hands out of the way, he just might start looking for other places where he can make choices and demand the things he needs. And isn’t that what equal rights are all about?


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