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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