Disability invisibility

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“On the surface, I am your average pumpkin spice latte-drinking, fashion magazine-reading girl.” (Book K. Sadprasid\The Aquinian)

For all intents and purposes, I am disabled. I wear an ostomy bag 24/7 because when I was 16 years old, I had my colon removed. This was due to severe Crohn’s disease. I do not go to the bathroom like a normal person would – this would qualify me as disabled, right?
The thing is, nobody can tell I have an ostomy. Unless you’re spying on me through the bathroom stall (by the way, please don’t do that), you would never know there’s anything about me that’s different. On the surface, I am your average pumpkin spice latte-drinking, fashion magazine-reading girl.
Often the thought crosses my mind – am I really that disabled? The universal symbol for disability is a person in a wheelchair, but I’m not rolling around in one or shuffling down the street in a walker.
Occasionally I’ll be in the waiting room at the doctor’s and a patient with a severe mental disability will come in. I will immediately tense up. I’m not afraid to admit that most mental disabilities make me uncomfortable. Then I remember that I’m supposed to be disabled too.
When I say I’m disabled, I feel like a liar. When I’m applying for jobs online, I always hesitate before I decide to check the “do you have a disability?” box. Because then, what if I actually got the job? They’d take one look at me and declare me a liar, and I’d be forced to lift up my shirt as proof. I’ve been given dirty looks as I leave the disabled bathroom by people who don’t understand that I actually need to use it.
The problem is, I don’t know if this is a problem with me or with everybody else. Maybe I’m just a privileged disabled person who gets to “pass” as normal. Or maybe it’s that everybody else has a narrow view of what disability looks like.
I’m not breaking new ground when I say Crohn’s – and by extension ostomy bags – have a large stigma attached to them. Over the years, we’ve made great strides in reducing the stigma of things like breast cancer and mental health. But Crohn’s, not so much.
And hey, I get it. It’s easy to sexualize breasts (“Save the Boobies,” anyone?) but not so easy to sexualize colons. Therein lies the issue. We’re not comfortable talking about it and as long as we’re not, I’ll still be in the space of kinda-maybe-not-really-disabled.
Well, that’s what I’m writing this for. This column is a different look at disability and illness. And maybe – just maybe – it will make everyone, including me, a little more comfortable.

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  • Show Comments (2)

  • Ali

    I think you’re very brave for stepping up and writing this. I too have struggled with the “am I disabled?” debate, since my ostomy surgery 6 years ago. The thing that got me thinking “yeah, maybe I am” was when I realized that I am now 3+ years from finishing a 2 yr postsecondary diploma due to the fact I never completed my first year. 6 weeks before the end of the year I had to go in for surgery thanks to a full obstruction. Add to that a complicated recovery, a move across the country and I am right back at year 1 at a different school. If it wasn’t for having Colitis, and my ostomy I would have completed school on time and would be out in the workforce by now.

  • Cory G. Litzenberger

    RIGHT ON! Well written article and I encourage you to keep spreading the word. I get mad everytime I enter a business and see a sign that says “no public washroom” or “washrooms for customers only.”

    I did a presentation once asking the audience of local business people who knew me… but didn’t know I had colitis… “how would you react if the person you didn’t know beside you all of a sudden passed gas” … “How would you react if the person you are in line at the grocery store with all of a sudden pooped their pants.” … “What if I told you I was that person?”

    The message needs to get out.

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