Friday, May 1, 2015

My Most Visible Disability Has the Least Impact on Me (No, Really)

Blogging Against Disablism Day 2015 post!  This is year....eight or nine for me, I think.

I am multiply disabled.  I have cerebral palsy, anxiety disorder/OCD, and a fairly recent diagnosis of asthma.  And those are just the ones with formal diagnoses or that are not incorporated within my other diagnoses.  If I really stop and think about all the formal diagnosed disabilities, plus the ones I've self diagnosed and/or haven't had the chance to get tested for yet, the disability count is probably around six or seven.  The CP alone could be broken down into three or four distinct disabilities.

I've been "out" about being multiply disabled for several years, once I realized that the label could apply to me.  All of my disabilities are intertwined.  Yet, people see me walk in with mobility aids or roll in my wheelchair and it's like their focus narrows to just the parts they can see.  They don't stop to consider that a) I have more than one disability, and b) that those disabilities could actually affect my life more than CP does.  One of the reasons I love elmindreda's essay on the "difference slot" is because it rings so true.  Only, in my case, I don't have a choice as to which disability is considered my singular "difference".  It's obvious from the minute I enter a room.  It wasn't always, but by the time I was diagnosed with other things besides CP, I was using mobility aids pretty much full time outside the house, and so had entered the realm of the visibly disabled.

I think people often think of my CP as sort of the "main dish" and all my other disabilities as "side dishes".  I still fall into this trap myself sometimes.  After all, I use a wheelchair!  It's a Big Thing!  It takes up space!  It makes my presence very, very obvious.  But day to day, what affects me the most is actually not CP.  Most days, my CP is just sort of there.  This is the body I inhabit, and since I've always inhabited it, I don't know any different.  Sure, it presents me with probably the most environmental barriers out of all my disabilities.  My asthma or anxiety doesn't prevent me from going into a store or accessing transportation (usually, unless there's a lot of cigarette smoke or other smells that can trigger my asthma.  And don't even get me started on car exhaust.).  But anxiety and asthma both disable me in ways my CP never has.

My anxiety can lead me to cry for hours on end, for ridiculous, tiny reasons.  It twists my mind into making me believe that everything is horrible, even if everything is going well.  It can cause me to avoid foods, even foods that I love, because of my irrational fear of food poisoning.  Sometimes, it'll cause hypersensitivity to smell, particularly different food smells in one place.  Many times during college, I'd eat a few bites, become overwhelmed by all the mixing smells, rush out of the dining hall, and end up hunched over, gagging and dry heaving and praying that I wouldn't throw up on the grass in front of all my peers.  My phone anxiety causes me to put off making important calls, like making doctor's appointments, because speaking to strangers on the phone terrifies me.

My asthma makes me feel like someone is squeezing my lungs.  If my asthma is triggered, I can end up coughing for days on end.  Even if I don't have a reaction at first, I often have delayed reactions, where I'll be fine and then as soon as I lie down to sleep, I'll be coughing and short of breath.  On a bad day, I won't be able to walk ten feet to the bathroom without feeling short of breath.  I try to make my showers as short as possible, because the combination of steam, moisture, and scented shower products makes me feel like I can't breathe.

Both anxiety and asthma can cause insomnia, which can probably be considered another disability in and of itself.  All of my disabilities can cause chronic fatigue.  Not being able to breathe or constantly obsessing are both incredibly exhausting.  Ironically, though everyone thinks my CP is a big deal, none of the four prescription medications I'm currently on are for CP reasons.

Though I've gotten (mostly) comfortable being disabled in public with my mobility aids, I still feel a sense of shame when I have an anxiety attack in public or when I need to use my inhaler.  I have sat coughing uncontrollably during class, and I have forced myself to wait to use my inhaler, because somehow, in some weird way, I'm embarrassed to be disabled in that way.  I'm embarrassed to be disabled in a way that deviates from what people see.  I'm comfortable telling people I need wheelchair accessibility, but I'm far less comfortable telling people that I need a low scent or scent free environment, or a quiet room where I can go if I'm having an anxiety attack.

My difference slot is broken, stuffed by so many differences that I fear sometimes that people will think I'm just looking for attention.  But there's more to me than meets the eye, and I hope that someday, other people will give as much consideration to my other disabilities as they do my mobility impairment.


Blogging Against Disablism Day, May 1st 2015
[The Blogging Against Disablism Day graphic, depicting a colorful grid, with each square showing a different colored stick figure person, like the ones for the restroom signs.  Some of the stick figures have mobility aids, and one of them is just a handicapped symbol.  At the top it says "Blogging Against Disablism"]

3 comments:

  1. Thanks for this great post, Cara!

    As someone with a chronic illness which effects my body and brain in a whole range of ways, I never cease to be disappointed by doctors who take one look at me, in my wheelchair and imagine that walking is a priority. It would be nice to be able to walk further and with less pain, but goodness me, that's not what would enable me to work or socialise more. It would make me mildly more independent, but not as much as if I had the stamina to learn to drive.

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  2. Absolutely great post! And I agree on so many points - with you and The Goldfish: I could care less about walking at this point, but don't doctors always bring it up as a goal? Guys ~ it's so far down on my list of things I need to address, honestly. How about breathing? Being able to eat without it coming back up at me? Having a day that's less than a 7 on the pain scale? Those things are all much more impactful on my life than the fact that I can't walk. Your description of one disability being the 'main dish' and the others being 'side dishes' was particularly poignant, as was the idea that it isn't something we, as disabled people, are allowed to choose for ourselves, but something that others feel is their right to choose for us. Such a good post.

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  3. Hi Cara,
    It's Margot. Great post! I have another friend with anxiety and CP combined and the anxiety was definitely harder for her to deal with than her CP. It also created some strange communication barriers between us when they slept over at my house. It may be harder for you to feel comfortable explaining your asthma because it's new compared to the CP. It changes a small part of your identity maybe. I didn't realize you had asthma until I read this just now. I know you'll figure it out! You are a strong woman!

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