Content note: includes discussion of eating disorders and treatment experiences, use of ableist slurs
Before I had even heard the word “ableism,” I knew what it was. It was that pit in my stomach I got when meeting non-disabled people, knowing they had already made up their mind about me. It was the heat rising into my chubby four-year-old cheeks whenever someone laughed at my stutter or sneered, “I don’t speak yawn.” It was seven years of rotating anorexia and bulimia—the pounding of my palsied feet on the treadmill, the denial of food, the feeling that I had to give something up because people like me “took too much.” Ableism was contagious like a strawberry plant—sprawling across every other seedling, stripping them of their potential to flourish.
It took over my every waking thought.
Erica, don’t stutter. Breathe. Speak slowly. Stop. Stop. Stop. Breathe.
Put your palsy hand down. It looks like a claw. Put it down. You look like a freak.
You can’t eat. You just can’t. They take the stairs, you take they elevator. They can eat, you can’t. That’s just how things have to be.
You can’t take less than three AP classes. They’ll think you’re stupid and crippled. One of those things is bad enough.
They can’t know that your mom dresses you. You can’t go on overnight trips. If you do, they’ll find out and think you’re a baby.
I began to restrict myself because the world restricted me. If I could not enter a building because of stairs, oh well, I did not deserve to be there anyway. Clearly, whoever designed the building didn’t think I should be there.
I remember my first day of kindergarten, waiting at the bus stop. All of my new classmates went to the same pre-kindergarten except me. I had gone to a special education preschool because I needed intensive physical, occupational, and speech therapies multiple times a week, so I did not know anyone, but there we all stood at the corner of Sandy Lane with name tags strung with yarn hanging around our necks. My tiny walker sparkled in the sunlight. That’s when I saw Brandon, his black hair in tight curls that stopped at his ears. My little heart leapt out of my chest as I noticed that the shapes of our name tags matched; we were in the same class.
Throughout the year Brandon and I played dolls during recess—my character was always in a wheelchair or used crutches and his character was always Spider-Man. It never seemed to bother him that I was open about my disability. I did not realize at the time, but Brandon was my first abled “ally.”
Brandon was also in my third grade class. When we had to write short stories, he wrote one about what like in the future. In this futuristic world he created, I used a rocket chair. It dawned on me that it was the first time one of my able-bodied friends accepted me as I was. In third grade, Brandon did not care about stem cell research or finding a cure to fix my body that society deemed broken. Instead, he configured a way for me to fully participate in society. He still played dolls with me at recess even though his friends would play European handball.
Throughout high school, I struggled to make and keep friends. I had a friend group freshman year that gradually decided they did not have room for me. I spent my afternoons on the treadmill, at the track, and treading up and down the stairs. I made myself as small as I felt, which probably sounds poetic, but it was monotonous.
I did not realize at the time, but years of unaddressed internalized ableism was bleeding me dry. Internalized ableism is the result of both absorbing ableist messages and a lack of conversations acknowledging ableism. Not having one’s identity reaffirmed by others often leads to negative self-perception. Many of my disabled peers have noted that inaccessibility often makes them feel forgotten or unimportant. They feel ashamed asking for accommodations. If architects and event organizers did not bother to think of us, we conclude that we aren’t worth thinking about.
Unfortunately, I was unaware of the concept of internalized ableism in my early college days. I always thought that when I got to college, my life would be sorted out. I tried not to think of my disability much or how I was different. I reveled in having no one to answer to about starving and wasting afternoons at the gym. I didn’t fantasize about college nights of boxed wine and hard cider; I fantasized about subsisting on air and being able to run my fingers over my hip bones. I would never admit it to myself, but my obsessions were the most readily available distractions from thinking about inaccessibility or what the future might hold for me or how others perceived my disability.
The first time someone suggested that I was using food as a distraction from my internalized ableism was at my college’s counseling center. I laughed. This woman knew me for less than a month—she couldn’t possibly know what she was talking about. My problem with food was minor. My real problem was that if I let myself rest or nourished myself, I would lose control and balloon up. I could not believe this woman would suggest that my issues were somehow deeper than having to keep my insatiable hunger in check, let alone, tell me I had a clinically diagnosable eating disorder. When she asked if I would be willing to go to treatment, I retorted, “Maybe if I lose twenty pounds,” and walked out.
Eventually, I was forced into treatment—it was either that or leave school for good. After six hours a day at Mather Hospital for four weeks with an all-inclusive lunch and dinner package, daily group therapy, weekly individual sessions, weekly multi-family groups, nutritional counseling, and supervised bathroom visits, I expected to be cured. My therapist, Daria, and her intern, Rachel, always brought up my disability during our sessions. I always changed the subject or brushed it off. I told them it was irrelevant.
One day when Daria was in rare form, she turned to me during group therapy and asked how my mother was doing. My mom had been diagnosed with cancer two years earlier. She was in the hospital for half of the time I was in treatment, so my father’s sisters came over every morning and night to help me shower and dress. This distressed me. I hated feeling like I couldn’t do anything. I hated not having my mom around.
I began sobbing. It was the type of cry where my lungs singed and my entire muscular system spasmed. I had nowhere to run. I had to face it. My mom was sick and I felt like a burden. Weirdly enough, before I entered treatment, I only confided in three people about my mom having cancer. If I didn’t talk about it, it felt less real. I didn’t want to inconvenience my family. I wanted to be independent. Facing all of these deeply concealed thoughts was terrifying. I felt as though my shoddily constructed house was crumbling, and I was left in the wilderness. I did not know how to survive without shelter, even if my shelter was doing more harm than good.
As Rachel constantly reminded me, the only way out is through. I didn’t understand what she meant by that. I thought treatment would be addressing the diet culture that weaseled its way into my brain. I even thought they would possibly delve into my family dynamics, but never did I expect them to discuss my disability. In those short weeks, I began my journey of confronting my internalized ableism. I began my journey of discovering my identity as a disabled woman. I began of journey figuring out how to face ableism without abusing my body. This journey is ongoing. I think it will be a lifelong journey, but the only way out is through.