"You don't look disabled..."
- by Bri - (The "you" in this tale isn't you, the reader. Just FYI.)
"But, you don't look disabled." My gut response is to say, "well you don't look like a jackass, but here we are." I DON'T say that. But a tiny piece of me wants to.
Because what they're saying is I don't look "disabled ENOUGH."
Over the years I've tried to understand what this means. Is it because I'm not in a wheel chair? I have a cane, but I don't always use it. Am I supposed to chain it to me at all times, so people know I'm disabled? Or should I look more...sickly? I could just stop wearing makeup. My ghastly ghostly pallor and sleep-sunken eyes would probably let you know I'm disabled. Or would it? Would you think I just have a cold or flu? What about when I have a mast cell reaction and my cheeks flame bright red and I itch all over and I feel like I'm having a hot flash cranked up to 11 and you tell me "I'm too young to have hot flashes" and I'm sweating like a pig on a hot tin roof and I reply "TELL MY FUCKING HOT FLASHES I'M TOO YOUNG." Is that....disabled enough?
Or do you need my medical records? You'll see that when I was a child I was repeatedly admitted to the ER with swollen airways. That I've had sinus infections twice a year since I was 2. That I've always had random rashes showing up and disappearing. Or that time in middle school where I got that weird virus like Mono but wasn't and all the doctors were perplexed and the virus gave me lactose intolerance and the doctors said I'd grow out of it. Is that enough? Or do you want my current medical records? In the past two years I've faced my own possible death three times. Once when I lost 25lbs in less than three weeks because my digestive system decided to reject everything including water. My Gastro specialist said "fix it or your go into the hospital tomorrow and we give you a feeding tube and PICC line." Then there was the time when I was having an allergic reaction that wouldn't stop. Wouldn't stop with 4 Benadryl, 2 Pepcids, 2 Zyrtecs, 3 hydroxyzines and one full EpiPen in my system. By the time I got into a room at the ER my esophagus was closed and my trachea was strangling me. Is that disabled enough?
But, these are isolated incidents. I'm not in the Emergency Room ALL the time. I mean, I have good days. Do I have too many good days to be considered disabled? Am I ALLOWED to have good days? Well, even on my good days I'm still in pain. Something's always in pain. Sometimes it's my 90-year-old spine, with no lumbar cushioning and bulging discs. Sometimes it's my EDS joints and my shoulders that regularly "schlupp" out of their sockets and I have to smash them back in. Sometimes my knees dislocate when I'm just sitting. Sometimes it's my ankle. On a bad day it's a rib and I'm flopping on the floor like a landed fish, trying to squeal because the pain is the worst I've ever felt but my rib's out so I can't actually move air around my lungs until I slam my fingers into the right spot to get it popped back in. Then I usually burst into tears because FUCK. Dislocated ribs hurt and I get them too often.
But I don't totally dislocate joints every day. Sooooo is that not disabled enough? Some days I can do my makeup, hair, get dressed, feed myself a nasty-ass shake supplement to stay alive and go to work and work and come home and get myself to bed. Does that disqualify me from being disabled? Even though I have to shower the night before because showering is FUCKING EXHAUSTING, and I have to sleep after the ordeal. And I have to time my eating juuuuuust right or my digestive system will revolt and I'll spend the whole day living in the bathroom vomiting or shitting. (If you had any idealizations of me as a person, I'm sorry I just ruined that.) I've had many a moment where I've asked myself, "Did I seriously not chew that?!?" I can wear makeup most days, but sometimes if my system is already taxed I'll come home with a rash and an allergic reaction. I mean, on a good day. If I'm lucky, my shoulders will even stay in place long enough for me to put up my hair. And I've planned my day around driving because that's another task that wears me out terribly. I've sat in the car crying because I had the ability to drive to work, but was so exhausted and in pain by the time I arrived, walking to my office seemed an impossible task. My office might have as well been on the moon as far as my ability to get there was concerned.
Is that disabled enough? AM I DISABLED ENOUGH?
To whom must I prove this? Who gets to decide if I'm disabled enough? Do I not suffer enough? Do I not have to alter my life enough? Am I not in enough pain? Am I able to enjoy my life too much? Must I give up everything I find happiness in? When am I DISABLED ENOUGH?
But here's the thing. Able-bodied people don't need to prove they're ABLE ENOUGH. They don't need to justify they can do things. I can fucking do things. Why do I need to prove I'm disabled enough?
Because we live in a society that assumes ablism. We see ablism as the "normal human state" even though we move in and out of ability and disability states throughout our lives. We assume that if we are able, we will always be able. The truth is, at some point, EVERY HUMAN will experience some form of disability. Treating ability as the default setting is harming us as a society. We have a detrimental preconceived ideology of what "disabled" means and anyone who falls outside that cookie-cutter form doesn't count. But disability comes in as many forms as there are illnesses and diseases and accidents and injuries. By stripping away the ablism, we can see how our society is hurting and harmed because of how we define "disabled enough."
I don't always look disabled. Maybe it's time we start looking at how we "see" disability, and recognize that we are inherently ableist. Ability is temporary.