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Terri Mauro

Disablism and Parenting Children with Disabilities

By May 1, 2011

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Blogging Against DisablismWhatever You're Doing, You're Doing It Wrong: When I was a senior in high school, I had a wall hanging that seemed to me to be the height of wisdom. It was one of those linen-and-driftwood numbers hung by a piece of twine that was popular in the 1970s, and against the tie-dyed background were the words, "To dream of the person you would like to be is to waste the person you are." I loved it, because it gave me permission to stay in my comfort zone; my mother hated it, because she felt I should never stop challenging myself. At the time, I resented her apparent lack of enthusiasm for the person I was, her apparent conviction that being satisfied with myself was a sign of laziness.

Now that I'm a parent, of course, things look different. Particularly as the parent of children with disabilities, I find the line between dream vs. reality is hard to find and hard to walk; it shifts so severely depending on who's drawing it. Certainly, when my kids were young, a parade of learned professionals made it very clear that to dream of the person these children would like to be -- to imagine, even, that they could dream of anything outside their immediate and severely limited reality -- was utter foolishness and best abandoned. But it seemed to me that loving the person they were and celebrating the person they were necessitated dreaming that they might one day be something more.

I think for parents, this doesn't feel like a betrayal, like a sign of dissatisfaction or disablism. It doesn't feel like a lack of enthusiasm for the child as-is, like a stamping out of perceived imperfections. It does feel like a big F-you to know-it-all professionals, a "we'll show you," a "don't understimate my child." Yet when I read things written by adults with disabilities, it becomes clear that many self-advocates feel about parents seeking cures and corrections the way I felt about my mom's disdain for my wall hanging. Does intent matter? More to the parent than to the child, I think.

My daughter is taking an ASL class in college this semester, and because she has difficulty with reading, I've been reading her textbooks with her. One text on Deaf culture told the stories of several Deaf adults whose parents had worked hard to remediate their deafness with implants and lip-reading and speech lessons and school inclusion. Their actions come off as heartlessly attached to the notion that the only way to deal with disability is to make it look as much like ability as possible; any amount of torture their child endured was worth it if it made them more "normal." Within the context of these adults' experience and Deaf pride, it's easy to shake your head and wonder what those parents could have been thinking ... except I know what they were thinking, and I've thought it for myself. They were fighting for a life for their child, a "life" in the only context they knew, their own. Been there. Done that.

In some ways, I think this is more a parent-child issue than a disability issue. There's a level on which it's no different than any adult child's second-guessing of a parent's priorities, whether the mismatch is about career choice or religion choice or lifestyle choice. In a way, it's a parent's duty to dream of the person their child might be, and an essential part of growing up to embrace the person you are, to encorporate your perceived difference as your greatest strength and source of pride. It's entirely healthy and appropriate for adults to take as a badge of identity the very thing their parents hate and battled against. Yet can our children grow and develop to the point of resenting us if we don't push them and provide them with every opportunity to grow and develop? It's not like kids come with a diagram of the completed adult version that we can use as a guide.

The challenge for parents, I suppose, is distinguishing what part of our advocacy is about us and what part is about our child, and that's a hell of a thing to figure. A recent story arc on the TV show Fringe seemed to me to offer a great depiction of the quandary we find ourselves in. A relationship becomes a love triangle without the man realizing it -- the woman he loves has been replaced by her counterpart from a parallel universe. She's exactly the same, and yet not the same person at all. He notices little differences, a lightness that was missing before, but imagines it's a result of her being in love, of being with him. He ignores all the signs, enjoying the progress in their relationship ... until the switch is revealed, his true love returns, and she's heartbroken that he couldn't tell that the other woman wasn't her.

Parents of children with special needs often feel, I think, that there's another child just like the child they have -- one that's been stolen by disease or disorder, or one who's just awaiting release. If we love that child, the one we imagine to be our true child, are we betraying the child before us? If we love the child before us, are we betraying the one trapped somewhere in another universe? If our child is suddenly easier to handle, quick to blend in, different in some hard to identify but fundamental way, do we celebrate that or worry about what was lost? (And if we could punch a hole in the universe to save our alternate child, as another Fringe character does, would we cross that line? Would we risk the lives of other children to try to put things right afterward? How could we? How could we not?)

I'd like to think that my dreams are about making the most of who my children are, and not who they might be in some alternate version. But I know we will have disagreements about that. My daughter turned 21 this year, and has already let me know that she wishes she'd stayed in her self-contained class as a child, where she felt safe and had friends, rather than being pushed into inclusion, a place full of self-doubt and social insecurity. She hated large parts of the marching-band experience I forced her to have in high school. My comments about how she should conduct herself in college -- how she should advocate for herself -- are irrelevant because I'm not there, and I'm not her. I'm glad for her to come into her own, but the reins of advocacy are hard to relinquish.

She's happy with who she is. She does not want to dream -- or rather, her dreams are her own, finally, and not mine. I am trying to quiet my mother's voice, ringing in my head, fighting to come out of my mouth. I suppose she has as much right to hear it and roll her eyes as any other young adult.

Today is Blogging Against Disabilism Day. Read more posts from around the Web at Diary of a Goldfish.

May 1, 2011 at 7:12 pm
(1) Attila the Mom says:

Came from BADD, love your post!

August 18, 2011 at 6:13 pm
(2) Pam w says:

Thank you for writing this amazing article – for parents and for teens and adults with disabilities. For me and my son, especially, and also for my daughter who worked with ARC self advocates in college. The balance beam we walk seems to get thinner all the time.

May 28, 2013 at 4:37 am
(3) JHR says:

Terri, your article made me squirm. but also made me look in the mirror and ask for whom do I advocate – is it for my daughter or is it really more for me?

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