Claiming Crip

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Learning to Grow

Trigger Warning and Author's Note: The following essay discusses my personal experiences with eating disorders and self-harm. It includes themes of medical gaslighting, ableism, and fatphobia. I'm sharing this story because I think it's important, but I also recognize that parts of this essay may be triggering to some people. If you are struggling, please reach out for help and support. There are a number of resources included at the end of this essay, and I am always available if you need to talk.

The silence in the room was palpable as I processed what had just been said. My fingers unconsciously ran down the sleeve of my sweatshirt that was far from seasonally appropriate for fall in southern Florida.

“Of course you hate your body, you’re in a wheelchair,” his words echoed around me, growing larger and larger with every passing second. I sat there stunned unable to respond, and unsure what to do next.

"Anyway,” he continued,  paying little attention to the way my body language and demeanor had shifted over the past 15 seconds, “it’s not a big deal if you skip meals sometimes. I mean it’s not like you’re thin.”

I swallowed hard and stared at the ceiling, counting seconds and trying to avoid letting my emotions betray me. After all, I thought to myself, he was right, I'm not skinny, and girls like me should hate their bodies, so maybe everyone is overreacting. Everything is fine. Everything is always fine, and now I have proof that nothing is wrong.

I continued staring at the ceiling in the dark, dank therapy room, staying uncharacteristically silent as the minutes passed. I must've zoned out, because eventually after what seemed like hours, I heard him say my name.

"I’m sorry, what did you say?" I asked quietly, coming back to myself.

"I asked if you ever hurt yourself, or had thoughts of hurting yourself," he said.

Like I would tell you, I thought to myself before answering with as much conviction as I could muster, "oh, no, of course not." My lie seemed to satisfy his sudden concern for my well-being because he smiled and said, "I'm glad to hear that. I'll see you next week."

I exited the office as quickly as I could, fidgeting with my bracelets and holding down the sleeve of my sweatshirt that just barely concealed the scars that lined my wrist. My illnesses had made me such a liar, but then again people made it easy to lie because everybody expected someone like me to be miserable and depressed, and when it came to food, people were more likely to praise me for skipping lunch than they were to be concerned.

That was not the first time I had been told that it was okay for someone like me to hate her body, to destroy it, and it wouldn't be the last.

My body has never come close to fitting even the most liberal definition of "normal" or even "socially acceptable." For all my life, I have been physically disabled and primarily used a wheelchair for mobility, and for most of my teenage years and adult life, I have been varying degrees of fat. 

I've never had the privilege of inhabiting a body that allowed me to blend in with the crowd and go unnoticed. I rarely see people who look like me on television and in other forms of media content; my very existence is so uncomfortable to many people, that I'm often the victim of unnecessary misplaced "concern" over my health and well-being.

To say the least, I have long had a complicated relationship with my body. I grew up a disabled girl in a society that makes no secret of saying who I am is the problem. I attended countless physical therapy sessions where I tried and tried and tried to be as physically normal as possible, but I never succeeded. No matter how hard I tried, it wasn't enough. I couldn't make my body fit in and look and behave like everyone else's.

Being physically disabled, my body has never been completely my own. From the time I was a child, I was bombarded with messages that convinced me that there was something wrong with my body and the way I moved through the world. Whether it was the strangers on the street or parents of classmates who would look at my mother with the most condescending pity and say, "you're so strong, I could never raise a child like that. I don't know how you do it." The people who would treat my friends like saints just for hanging out with me, or the professionals who would continuously remind me the importance of keeping my body small so that others could take care of me without too much struggle or "inconvenience," I always felt like the body I inhabited made me a problem.

I truly believed that if I could just be smaller or less disabled everything would be better and all would be right with the world. In my mind, I was in control of my destiny, and all I needed to do was fit into other people's expectations of what and who I should be, and everything would be fine. 

Pretty simple right?

Far from it.

No matter how hard I tried, my body never seemed to do what I or anyone else wanted it to do. When I was eight, I started early puberty, and among other things, gained a bunch of weight. Now, not only was I physically disabled, I wasn't small, thin, and socially acceptable. Something had to change, so I went on a diet and lost 10 pounds. I remember everyone was so proud of me. 

Thus was the beginning of what would become an all-out obsession with controlling my body and never being too much. If my body was the problem, I was going to do exactly what the doctors were always trying to do, I was going to fix it, but this time I was going to be in control.

On the outside, I always acted confident, outgoing, and self-assured, but on the inside, I was at constant war with myself for not living up to society's standards and ideals. I believed the lie that I embodied the two worst things a person could be. I was disabled, and I was fat. By now I knew I couldn't change the disability part of the equation, but I was determined to be thin. I lived in fear of my body becoming out of control.

Right before I went to college, I remember a physical therapist telling me I couldn't gain the freshman 15 because then nobody would be able to take care of me. This terrified me and sent my food obsession into overdrive. Throughout college, I vacillated between starving and binging and purging. Even though my friends saw there was a problem and tried their best to support me, it was hard to get treatment and support because the professionals thought it was normal for me to hate my body and didn't see anything wrong with "a little weight loss."

My body was meant to be despised, so of course, I was miserable. Of course, I hated my own skin, wouldn't anybody in my situation? 

Being fat and disabled, meant being allowed, and even expected to hate and destroy my body. It meant being praised for that destruction, often labeled as, "self-control."

I spent years hating and destroying my body because I wholeheartedly believed the lie that that is what people who look like me are supposed to do. I bought into diet culture hook line and sinker, and I believed that fitting into someone else's idea of beautiful or acceptable was the ultimate key to happiness. I spent years truly convinced that my body was flawed and broken, and exhibited the worst things a human being could possibly be.

That is what ableism, fatphobia, and diet culture do. They destroy you from the inside out and teach you that your body is always a problem to be fixed, conquered, or controlled. Instead of seeing all the beautiful amazing things your body does you begin to see its very existence as a failure.

Thankfully, this story doesn't end there. I'm not going to wrap it up in a pretty bow and tell you everything is perfectly okay now, but I am going to tell you that things have gotten better and that things get better. My recovery story isn't linear, and it's far from a lifetime movie, but it's real.

Eventually, with the support of my friends and family, I found the right kind of mental healthcare, a far cry from that awkward encounter in a dark therapy room in a college counseling center. I got a diagnosis of bulimia and other unspecified eating disorders. I found the right combination of medication and therapy. I talked, a lot, and I messed up even more, especially when difficult and traumatic things happened. For a long time, I vacillated between a series of unhealthy coping mechanisms, and it's just now in my 30s, that I'm really beginning to find healthy ones.

One of the most important parts of my recovery has been finding, and really learning to unapologetically use my voice and speak my truth. I'm still learning to set boundaries and to allow myself to express the full range of emotions, especially anger and frustration, but I'm getting there. For the first time in a long time, I'm focusing on growing instead of shrinking, and healing instead of destruction.

My body hasn't changed. I'm still disabled and I'm still fat, but the way I deal with it is different now.

Even when it's hard, I refuse to blame my body for the systemic failures that surround me and make living in my body 100 times more difficult than it has to be. I know that I and my body are not problems that need to be fixed, society is what needs to change. I have grown in community and through community with other people living in marginalized bodies, and I have learned that my story and my struggle are not as unique as I once thought.

When your body doesn't fit into society's standards or ideals, you are expected, and even encouraged, to break, twist, and maim yourself in order to blend in. You are expected to do whatever it takes to be as close to the ideal of the dominant culture as possible. Refusing to do that is not only radical and revolutionary, it's a necessary tool of surviving, and even thriving, in your own skin.

I accept my body, even when I don't love it because accepting my body is a radical act of self-preservation and a political statement that says my existence is nothing to apologize for.

I have written about body acceptance, fatphobia, ableism, and even eating disorders before, but I have never shared so clearly and openly the details of my story. I won't say I'm not scared to be this vulnerable, but I think the conversation around eating disorders, mental health, and disability needs to be had, and stories like mine rarely, if ever, make it to the table.

I was never the "right" kind of sick, and I didn't recover into the "right" kind of body. 

I'm writing this story now because people shouldn't have to struggle for over a decade to get help. I'm writing this because sickness and the need for support shouldn't be determined by the number on a scale. I'm writing this because I truly believe culture needs to change. I'm writing this because I know there is someone out there somewhere who needs to hear this and know they're not alone.

I still have a complicated relationship with my body, but we are finding our peace. I'm learning that I do not have to make myself smaller to make other people's lives easier and make other people less uncomfortable. I'm learning to take up space and to stop apologizing for my existence.

I'm here today because I got lucky, really lucky. I have amazingly supportive friends and family who fought for me to get the support I needed, but it shouldn't be that hard to get help when you need it. We need to stop telling the lie that thin and nondisabled are the only acceptable ways of existing. 

Being fat and disabled is not a bad thing. The way my body is and the way I move through the world is not a flaw or a moral failing. It's a completely valid and beautiful way of existing, and that is enough.


For more of my thoughts on the intersections of ableism, fatphobia, diet culture, and body politics, check out:

If you are struggling, please please please reach out for help and support. Whatever stage you are at, please know you are "sick enough" and you deserve to have your story and experiences taken seriously. If you need help and don't know where to look, please check out some of the great resources below. Recovery is possible, and you deserve it.

Project HEAL

National Eating Disorders Association (NEDA)

Beat | The UK's Eating Disorder Charity

I’m proud to be an ambassador with Project HEAL and support the great work they are doing to make eating disorder treatment more accessible to everyone who needs it, regardless of background, socioeconomic status, body size, or any other factor or identity.