Friday, March 6, 2015

Cerebral Palsy Awareness Month: Day 6: Disability Simulation

Today, I fully recognize the harm in disability simulations.  I know they don't actually work.  I know they breed misunderstanding at best, and pity at worst for how "bad" those of us with disabilities must have it.

But let's back up about 20 years and look at this girl...


...Who, in school, looked more like this girl...


...And try to imagine being thirteen.  Try to imagine being in your eighth grade English class, and hearing that there's going to be an experiment where anyone who wants to can use a wheelchair for a certain amount of time during the day.

I can tell you that then, I couldn't contain my excitement.  In fact, I was so excited this was going on, I very nearly volunteered to go around in a wheelchair for a few hours, forgetting that, at that moment, I was in one.  I didn't resent the experimental tone at the time, I reveled in the fact that for a little while each day, some of my classmates would be at eye level with me.  I enjoyed having wheelchair races with a friend before school in the empty halls.  I even enjoyed when we were reprimanded by my sister's teacher that "This isn't the Indy 500!"

I was so desperate for acceptance at this age, and felt like such an outsider, that the idea that other people would get to experience what I did felt like camaraderie.  It felt like connection.  Like community.  It didn't matter that it was manufactured.  It didn't matter that those able bodied kids wouldn't really get it.  Or that they might pity me.  I don't remember anyone saying anything of the sort to me.  They said, "This is really hard!" and I thought "Finally!  Someone gets it!"

Disability simulation came up again in high school and I can tell you that as a disabled person (who had a ton of internalized ableism and honestly thought of myself as some kind of broken able person instead of a strong disabled person) it had the desired effect.  The able kids didn't ever want to be disabled...and neither did I.  It was exhausting and hard and scary and...negative.  (Leading someone in the way all the able kids were told to lead each other, while one closed their eyes to simulate blindness was all but impossible...and being suddenly "blind" and having to trust a random kid to push my chair to various places was beyond disconcerting.)  

It even happened in college.  One day, I came into one of the classes I needed for my Special Education major and found that my previously sweet-natured professor had morphed into a short-tempered accusatory and kind of scary person.  She was making all of us 20-somethings read aloud.  Some illegible handout that she'd given.  When we read what was on the page, she snapped at us for getting it wrong.  A crash course in dyslexia?

It wasn't until a year or so ago that I started reevaluating my status as a disabled person.  That I dared identify myself as a disabled person and not a "person with a disability" (as my briefly pursued college SPED major drilled into me.)  It was not until then that I learned that disabled is not a bad word, and it's not about us as a people.  If disabled people lived in a world with ramps and elevators, where everything was accessible and we all had the insurance we needed and the adaptive tech we needed?  I don't think I'd consider myself disabled then, honestly.  Because it's not my Cerebral Palsy that limits me.  It's society.

From there, I did some reading on disability simulation and it clicked:  this didn't help me.  My sense of community and of belonging forged out of these simulations wasn't positive.  It wasn't even real.  My real community, and my real people are fellow disabled people who are walking and rolling down this same road with me.

Hello, fellow travelers.  You are not alone.

8 comments:

  1. While I like some of the messages behind "social model" of disability like not seeing disability as inherently negative as a disabled person with CP like yourself I find that the disability is still there and still has downsides even in the few environments where it is entirely accessible to me i.e I still feel tight,off balance, and have some joint pains. Society changing won't change that. My disability itself is in my brain circuits, not in society. Only the attitude towards disability is in society.

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    1. I mean, none of these 'models' get it exactly right. But I much prefer moving through life not hating or resenting myself because of something I can't change.

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    2. Have you heard of "spiritual model" of disability? Not sure what it is actually but sounded interesting.

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    3. I have not, but just the name makes me cringe, as I have not had good experiences with faith.

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    4. Seems like you had issues from religiosity judging from your posts. Spiritual faith and religiosity are very different. Very religious people seem more "cure" oriented. Spiritual people seem more interested in acceptance in my personal experience.

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    5. Even that gets tricky for me because the church I went where I experienced the most ableism was very vocal about not being religious and only being spiritual.

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    6. Well that church seemed to have more than a few things confused if you don't mind my saying so.

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    7. Nope! Don't mind it at all. That's putting it lightly.

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