Choosing visibility

Embracing Disability

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I’ve never been sure what disabled looks like. 

I have a privilege that many disabled folks in the community don’t have: I can choose whether or not my disability is visible or invisible. 

My superpower is that I can choose to appear disabled, pulling out my disability at a moment’s notice like a party trick. 

My other superpower is that I can poop while doing anything, and I don’t even have a butthole. 

Visibility and disability works like this: I’m sitting on my patio smoking marijuana — where I spend most of my time — when my upstairs neighbor appears on her balcony and begins spritzing her succulents. As her balcony sits directly above my patio, our eyes inevitably meet when hers peer over her plants ever so slightly. 

“It’s medical,” I blurt, batting the smoke billowing around me, remembering that she has a toddler upstairs. Reflexively, I point to my accessed port through which I’m currently running saline, even though the May sun reflecting on the plastic makes it hard to miss. 

“It’s OK,” she smiles. “It smells really good.” 

When my port is accessed, I transform from a person with a disability into a disabled person. 

People’s eyes immediately take in the needle affixed to my chest with tegaderm, the tubing sprouting from it into my quilted backpack, and something in their mind suddenly flips from examining my physical features to searching for more visible clues as to what could be wrong with me.

It wasn’t until I got to UC Berkeley that I became acutely aware of my intersectionality. From the minute my Cal 1 Card was issued, it seemed that suddenly everyone was demanding definitions and identities from me: What’s your major? What are you going to do with that? You’re going to do research, right?

In the excitement of it all, I turned to the identities that had been enforced upon me since birth, a  rehearsed speech at the ready, being called to account for the space I take up: I am a disabled student, an ostomate, an ostomy and disability advocate and a chronically ill college student. 

I was born with a rare disease called necrotizing enterocolitis in which my intestines were dead upon birth, necessitating their removal. I’ve had numerous feeding tubes, peripherally inserted central catheter lines and about 12 surgeries in 21 years.

I have only 4 feet of intestine, so my body doesn’t absorb nutrients like abled people, hence the need for my port infusions. I spent the first five years of my life, and a sizable amount of time since, in and out of the hospital. My condition is chronic, and I will have my ostomy for the rest of my life. 

Now that we’ve gotten to know each other, let me ask you this: Have you ever personally met anyone with a colostomy? Have you ever heard of them outside the context of elderly people or war veterans? 

It took me a surprising amount of time to learn that lifelong ostomates are hard to come by, that I would be one of the youngest people I know with an ostomy for most of my adolescence. 

As an extroverted person, I’ve often seen it as my responsibility to be the voice of those who are ashamed, for ostomates who have yet to accept their lifestyles and embrace life with a bag. 

My reality is, I’ve never known anything but life with a colostomy. 

I was literally born to be an activist. 

It’s this notion of predestined obligation to my community that got me onto the board of directors for my local United Ostomy Associations of America, or UOAA, chapter when I was 14, on the cover of the UOAA’s magazine in my high school softball uniform when I was 16 and now as a co-chair of three different national UOAA committees at 21. 

I could literally spend all day talking about ostomies; in fact, sometimes I do with my UOAA friends who are about 15 years my senior on average. We all get together on Zoom and play “Cards Against Ostomy” together. Though most are twice my age or more, they are the best friends I’ve ever had.

When I was 16, I underwent an elective, serious surgery in which my stoma (intestine) was moved lower on my abdomen. I requested this operation so that I could wear my ostomy bag as low as possible, allowing me the freedom to wear tiny crop tops like all the other teenage girls without showing off my unsightly attachment.

Five years later, I often wish I had kept my ostomy where it was.

In our age of social media and the importance of awareness online, I often wish I still had the luxury of pulling up my shirt ever so slightly to reveal my ostomy at a moment’s notice, rather than making a big show of practically pulling my pants down for every visibility photo I take. 

I strive to be an open college student and an ostomate, able to share these intersectional identities with student peers and the few friends I’ve made in my short time at UC Berkeley.

Instead, I constantly feel as if I’m hiding a part of myself in every English major group chat, every offhanded discussion with classmates. I wish people would ask about my ostomy. I wish they would recognize my disability, however visible or invisible. 

Don’t be polite: Ask me if I can have sex! I mean, we’re talking about pooping in a bag — it’s fair to say that social decency is up in the air at this point. 

My lived experience as an ostomate is valid, and I’ll be sharing this lived experience with the world throughout this column. The visibility of my illness does not reflect the level of pain and discomfort I endure daily as a result of my illness. I am just as sick, just as disabled, just as valid in the community as someone with an outwardly visible disability.

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.