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Wednesday, August 20, 2014

My autistic child is not your inspiration - Guest post

Originally titled: "She's no angel (but feel free to say something nice about her)"

...

My two-year-old scrunched up her face and frowned in concentration. She balled up her chubby fist, extending her pointer finger, and selected icons on her iPad screen.

"I. Want. Banana. Please. I want banana, please," said the childlike computer voice. My daughter looked at me, expectantly.

I frowned. "You can't have a banana right now," I told her. "You still have chicken and broccoli on your plate." Months of giving her any food she requested because we were so excited to encourage her language skills were starting to backfire on us.

"I want banana, please," she insisted, selecting the sentence over and over. "I want-- I want-- I want banana, please."

"No banana," I said firmly. "Chicken and broccoli."

She shoved her plate away, arched her back and let out a series of piercing shrieks, kicking her legs angrily.

My daughter-- "Ham"-- is nonverbal and developmentally delayed (with a diagnosis of autism that I'm considering potentially 'in flux' for a variety of reasons I won't try to get into right now). She'll be three in a few months and has about as many speech sounds as the typical ten-month-old. This hasn't changed  substantially in the seventeen months she and her sister have been in Early Intervention, or in the nine months since they started applied behavior analysis (ABA) therapy. In the meantime, though, we saw that she was clearly intelligent and easily frustrated when she couldn't communicate, so we got her an iPad and a communication app called "Speak for Yourself" and the rest is history. It's no easy road, but she can use her iPad and communication app to make simple requests, comments, or even tell jokes (like saying "booboo sad crying" or "oops! oh no! what happened?" and then laughing).

Things I would like to say about my girls: they love swimming, popsicles, Elmo, soccer balls, tutus, toy cars, books, the ocean, never napping ever, visiting their grandparents, going for a walk, and watching our dog go nuts running around on the hardwood floor and slamming into furniture.

But I will never post any of those sparkly GIFs you see plastered all over people's Facebook pages or say the things written on them, like, "my daughter is my Autistic Angel!", nor will you ever hear those words escape my lips.

Here's the thing: my kids are not "angels."

Geez, no one ever wrote this glowing an acrostic poem of ME.
Geez, no one ever wrote this glowing an acrostic poem of ME.
I don't mean to say that they're badly behaved-- no more so than any other soon-to-be-preschooler. It's just that I don't see their deficits as being so devastating that I need to balance them out with a friendly but equally dehumanizing characterization of their personhood.

Calling someone an "angel" as a term of endearment is one thing. We all call babies any number of sticky-sweet, often food-related nicknames-- "pumpkin," "cupcake," etc. That's adorable and I'm the first to admit that my kids have a lot of nicknames,  including the "Chicken" and "Ham" I use to talk about them online.
"Autistic angel" and its ilk are different. It's a personality trope-- a designation that limits a person with special needs to something more palatable than their diagnoses.  I think it makes logical sense that people would want to balance the more negative messages about disability in our society with positive ones. But when the pendulum swings too far in the opposite direction, it's just as far from its origin as it was before. I'm not the first person to make this observation.

By talking about the value of a disabled "angel" as mitigated by what she has to "teach" you about yourself, you reduce her to a functional tool in your own development-- something less than a full and separate person on her own. See what I mean about how damaging even positive attributes can be?
Why not, "Never Ignore Somebody With a Disability Because That's Super Rude and Uncool"?
Why not, "Never Ignore Somebody With a Disability Because That's Super Rude and Uncool"?

My children are still young, and I don't know what the future holds for them. But I do know that 83% of women with developmental or intellectual disabilities are sexually assaulted (and only 3% of assaults are reported). I know that people who are nonverbal or have limited communication are often unable to tell anyone that they have been abused or feel unsafe. The problem isn't the disabled person, but everyone else, when accessibility, safety, and access to resources are limited or nonexistent. This is the other thing that happens when we don't treat disabled individuals as people, the thing we don't like to talk about-- the other side of the pendulum.

Before saying something or sharing an "inspiring" image, ask yourself: does this statement or image turn a disabled person into a tool for boosting someone else's self-esteem or remind them that their own life could be worse? Does it distill someone's personhood and identity down to something that makes everyone else feel better about their disability? Does it "fix" the disability by neutralizing it and balancing it out with something palatable?

Instead of sharing these messages, you could listen to disabled people tell us about themselves. More and more, disabled teens and adults are speaking up and letting us know what they think and how they feel, including addressing the tendency of non-disabled people to be "inspired" by disabled people living their ordinary lives. Rob J. Quinn's book I'm Not Here to Inspire You: Essays on Disability From a Regular Guy Living With Cerebral Palsy, excerpted in his article here, and Stella Young's funny and powerful TED Talk "I'm Not Your Inspiration, Thank You" are two examples.

Please choose to share these messages and not your own manufactured ones. Let's amplify the disabled self-advocates's own thoughts and take a backseat on creating our own. Share the messages that will help them feel good about themselves, not the ones that help us feel better about them.

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Jules wrangles toddlers, herds therapists, and eats cereal hastily over the sink. Follow her occasionally-updated blog at The Adventures of Chicken and Ham.










 

3 comments:

  1. Perfectly stated. I've long thought being "inspired" by my kids makes them a tool. Now that I think about it, it makes the one being inspired look like a tool. Great post!

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