By Katie McIntire
Most people do not describe my body; they are too afraid to speak of it.
If they do, they only allude to it or speak of it in hushed tones.
Doctors describe my body because it is inherently medical. It belongs to a patient that was claimed by a disease that fits neatly within the confines of a medical encyclopedia.
My parents describe my body because it is like their body. It is a product of their bodies and thereby has always, and perhaps, will always, feel like an extension of their bodies. It feels normal to describe your own body; it feels like your story to tell. So, when my dad, a man known for his histrionic vocabulary, casually described my body as
“mangled by disease,” I was not surprised.
Mangled. I am sure it was not the first time my dad used this word or a myriad of other words synonymous with damage and destruction to illustrate what this disease did to me; to us. I am sure it was not even the first time he had done so in front of me. But it was the first time I heard him and understood the significance of his voice. It was the first time I was... hurt? Yes, hurt. Hurt by the word the man I trust most in this world used to describe my body.
Mangled is not the right word, but my body is messy. It is blanketed by odd textures and raised scars with uneven borders. Light pink and flesh-colored islands scattered across my skin. One of the largest sits at the top of my right thigh and takes the shape of South America.
Another smaller one, just south of it, is heart-shaped, which my best friend in the fifth grade said proved I was destined for love. My knees are bony prominences beneath atrophied layers of muscle and fat.
Scarred skin stretches thinly and tightly around my bones in some places, loose and doughy in others. My legs end abruptly where my ankles would begin.
My body is messy. When I was nine, my younger cousin, a boy, saw my residual limbs.
“Ewwwww,” he responded and looked away.
“Don’t say that! People like you make this world a very bad place,” I scolded. I did not know I knew the world to be a bad place when I was nine. I quickly slid my socks back over my stumps so as to keep them safe and hidden.
For much of my childhood, my body did not seem worth describing.
I knew it was diﬀerent than other kids’, but I had not yet learned to believe there was anything wrong with that. I took pride in my bright yellow wheelchair and prosthetics decorated with rainbow polka dots.
I refused to cover them up with pants because I thought they looked weird over the bulky, thick plastic that enveloped my limbs. The thought never occurred to me that Bermuda shorts in December must have looked weirder.
Like all little girls in our heteronormative culture, I was taught to strive for love and marriage and motherhood. Compliant with these demands, my crushes dominated my diary entries and many sleepovers were spent plotting how to get their attention; I did not know that my body had anything to do with this quest. I did not know my body would have anything to with achieving any of my desires. It was not until middle school that I started to conceptualize my beauty and understand my body as currency: an object to be exchanged for the love and validation I desired. It was not until then that I began to calculate the value of my body.
Valuable, and therefore desirable, bodies are the bodies of women on television or in advertisements. They define our concepts of value as beautiful, tall, thin, and always, always normative. Their bodies are not like mine; they are complete with all the parts of a ‘normal’ human. To increase my body’s value, I made every eﬀort to appear normal. I wore my prosthetics every day and hid them beneath pants. I refused to use my wheelchair because it forced me to reveal the truth of my body and succumb to disability. Disability is sad, pitiful, weak. The sexuality and desirability of disabled people is null and void. These were the implicit messages engrained in me throughout my life that I internalized and built my self-image around. I could not describe my body as disabled because that would strip it of value. I hid my body instead and
constructed the illusion that it was normative. I believed my body to be able and convinced myself it was almost whole because maybe then it
could fit within the concepts of beauty that I bought into; maybe then it could be worthy of the love and validation I desired.
The only boy who ever really desired my body never bothered to describe it nor inquire about it. He, like so many of my friends and acquaintances in high school and beyond, knew what happened to my body because someone else told him. Our relationship existed entirely within the illusion that my body was like anyone else’s. We did not talk about the transplanted kidney that bulges slightly from my abdomen or the scars on my back and shoulders. My legs hid under the layers of thick silicone and hard plastic of my prosthetics, unseen and untouched. We did not talk about what lies beneath them. Perhaps, he did not want to draw attention to the parts of my body he did not want to see. Perhaps, he sensed that I did not want to describe it to him or supply him with the images he would need to describe it himself. He did not ask, and I did not tell. We ignored my body like a shameful secret.
In high school, I described my body as crippled. I made jokes about my crippled body because maybe if I described my body with a laugh other people would feel more comfortable with it; maybe I would feel less uncomfortable with it. Somehow, it was diﬀerent and better than describing it as disabled. I used that word to claim ownership of it. It did not do anything to enhance the value of my body, but it was the first time I felt an obligation to describe it; an obligation to give it a name and a presence in my identity. But I did not know what that identity could be beyond making someone laugh.
The first boy to ask if my sexual organs function correctly despite my dysfunctional body was the boyfriend of my high school best friend.
He asked her, not me, “Do her... uh... does it work... down there?” My best friend laughed as she recounted the event to me, knowing full well everything worked perfectly fine down there, and we laughed together.
It didn’t occur to me to be oﬀended so much as it occurred to me to be curious. Do other boys think like this? Do they all wonder if I am as damaged down there as I am everywhere else? Do I need to make a public service announcement to clear the confusion?
ATTENTION ALL MALES: MY VAGINA WORKS JUST FINE.
Would that make up for the inadequacies of my body?
The second boy was much more direct. Only he was not a boy, he was a man. We ‘met’ on a dating app and our first interaction went a little something like this:
Jake or Chad or Mark or any other generic White male name you can imagine: “What happened to your legs?”
Me: “I had a disease when I was seven”
Chad/Mark/Jake: “Do your lady parts still work?”
Rather than ignoring my body, this man treated it as the most important thing about me. It was not a secret anymore but an object that I owed an explanation for. Sure, the object is damaged, dirty, and missing crucial parts, but does it still serve its most important function? The value of my body hinged on its ability to satisfy his desires.
Other men I have met online have not been so direct. Many never find out enough about my body to wonder what it may be hiding. I wear pants on the first date so that they have little clue of the secret I am keeping. So that I can maintain the illusion of my beauty, my value, my sexual appeal. I have deceived him.
At first, I feel free.
I am not yet bound to how he undoubtedly conceptualizes disability;
sad, pitiful, weak. The formula is simple, and I know it well; disability does not equal sex. And as a woman going on a first date with a man I met online, it is my responsibility to equal sex. My desire to date a good man who is many things, such as kind and smart and funny, is overshadowed by my responsibility to satisfy his desire. Above all else, I aim to please.
Later on, I feel worried.
If the date goes well, as in, if I think he likes me, how will I break the news? How will I reveal the dirty secret that is my body? But if it is like most dates I have had, it probably does not go well. We end the night with a brief hug and never meet again.
Finally, I feel safe.
My body is disabled, and I have learned to describe it as such. In my eighteenth year with this disabled body, I still actively hide it to maintain some outward illusion of beauty, value, and maybe sexual appeal. The illusion is diﬀerent now because my body relies on a wheelchair every day. The burden of portraying a normative, able body became too great to bear. I cannot pretend my body is anything but what it is, and I do not want to. I am no longer ashamed. I know my value is built on more than my beauty, more than my ability to satisfy, or not satisfy, the desires of others. But I still desire to be desired.
My body is disabled, and some of my scars are downright beautiful.
They make my body aesthetically interesting. At the very least, my body is not boring. When I look in the mirror, I see broad shoulders decorated with varying shades of light pink and brown, silky soft but not smooth blobs with feathered edges – intricate designs that only I possess. I see beautiful and tragic reminders of what disease did to my body; my family; my life. Reminders of all that my body has done, all that it can do, all that it will do. I do not see weakness or sadness or pity. I see a body built from trauma and from love. When I look in the mirror, I see resilience.
I also see ugliness; features that are not appealing to look at. I do not describe my lower legs, my bony, atrophied, loose-skinned lower legs as beautiful, but they are incredibly functional. In all its misshapenness and disfigurement and disability, my body has carried me through trauma and pain, through happiness and boundless joy, through deep valleys and mountains touched by clouds.
My body is the vehicle through which I see and experience the world.
It is inextricably tied to my identity. To ignore it, erases its value and to treat it like an object, mangled and damaged, erases its value. It is not just parts put together to please you. It does not have to function for you because it functions for me. I am disabled. I am beautiful. I am ugly. My body is valuable not for what it looks like but for what it achieves. It is resilient. It is neither black nor white but ambiguous, hazy, glorious gray. My body is desirable not because of what it does for you, but because of what it does for me.