A day in the life

Embracing Disability

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I get to see my intestine every day. 

I can do virtually anything while pooping at the same time.

Twice a week I have to jab a needle into my chest in order to deliver necessary medications over an eight-hour period.

What about you?

These are just a few affordances, a few glamorous perks if you will, to being a disabled and chronically ill student, an experience that varies by individual.

Until I started living with my boyfriend in March of last year, I never really put much thought into how my everyday routine might look different from that of an abled person.

Like, does it actually feel that good to poop in the morning? And why does it take so freaking long for so many people? I guess I’ll never know.

And you probably don’t know very much about what my mornings look like either, so here’s some context: My stoma is the piece of intestine that sticks out of my stomach. I have short bowel syndrome, so the only intestine I have left reaches from my stomach to my stoma, and that’s it. It’s what my ostomy bag covers; I cut my bags to fit snugly around the little stub. 

More often than not, an ostomate can choose where theirs is, a luxury I took advantage of when I had my revision surgery at 16. My stoma now sits extremely low compared to others, which was a purposeful decision at the time. 

Sometimes, when I shower with my ostomy bag off, I position my towel over my stoma and stare at myself in the mirror, sneaking a glimpse at an impossible body without it. 

I play this game of what-if with myself, even though it is my internalized ableism doing the careful maneuvering.

When my boyfriend and I had been dating for a few months, I started getting comfortable asking him questions about the biology of “normal” people that I’ve always wondered about, but felt too silly asking anyone else: 

What does diarrhea actually feel like?

What happens when you have to hold it in for a really long time? 

What are “skid marks”?

People don’t ask these questions, because talking about bodily organs and fluids makes them squeamish.

Let’s talk about that for a second. Why does it make you feel uncomfortable when I bring up aspects of my everyday life as an ostomate? 

The reality is, people are quick to judge or assume whatever they want about things they know little about. Even more unfortunate, in my experience, they rarely actually want to be educated about their ignorance.

This brings me to our first lesson on ableism.

Last year, over the course of the COVID-19 pandemic, I became subject to a new kind of ableism that I had never experienced before.

Let me explain — since the age of about 8, I’ve mastered the art of keeping the appearance of my ostomy bag pretty low-key with anything I wear. 

That is, until the events of the pandemic. 

Overnight, I was suddenly barred from using any public bathroom that was previously available to me. Businesses didn’t want to have to thoroughly sanitize their entire restroom after each guest’s use, so most restrooms were closed altogether.

I quickly became anxious whenever we were planning a public outing. Thoughts would circulate: Where am I supposed to empty my bag? How am I supposed to keep it flat, even by discreetly letting out the air once in a while? (This practice is referred to by ostomates as “burping,” and by non-ostomates as “farting.”)

As a result, outings had to be carefully planned around an accessible bathroom schedule, particularly around the geographical location of a Target, which would always have a bathroom. 

I cannot even tell you the number of times I’ve been accused of shoplifting in the last year and a half solely because I had been revoked the privilege of emptying my ostomy bag in public, with its appearance becoming that much more pronounced as a consequence. 

It most often happened at thrift stores, and each time was never more mortifying than the time before. 

After the first time, I called my boyfriend after quickly retreating to my car, sobbing as I recounted how the store associate had made me reveal what I was “hiding” under my shirt.

 It is my understanding that non-ostomates don’t have to constantly search for a bathroom, and can usually limit their bathroom usage to roughly twice a day.

If this is in fact the case, wow — take a moment to recognize your privilege for having an asshole, and the affordance it allows you by not having to search for a bathroom all the time. 

In fairness, this is not entirely the fault of my ostomy and is also the result of my interstitial cystitis, a bladder condition I acquired as a direct result of my proctectomy surgery in 2018. 

Some of us are just lucky, I guess.

Chloe Moody writes the Monday column on being a college student with a disability. Contact the opinion desk at [email protected] or follow us on Twitter @dailycalopinion.