Imagine waking up and realizing that your right hand looks, moves, and feels completely unlike your left hand. You stand up and walk over to your dresser and notice you are limping, but decide to ignore it and get ready for your day. As you lift the shirt you’ve chosen to wear and pull it over your head, your right arm suddenly stiffens, and it takes an additional two minutes to get your arm through the armhole. Once you’re dressed, you figure that the worst is over — until you go to tie your shoes. Your fingers on your right hand cannot grip the shoestring long enough for your left to do most of the work. L
ater, you leave to meet a friend for lunch, but when you step outside you notice that people you don’t know are staring at you, wide-eyed and open-mouthed. You try your best to avoid their gazes as you enter the restaurant. Your knees begin to buckle, and you know you’re going to fall.
All of this, which might sound unfamiliar to you, is my everyday reality. Strangers who see me often let their curiosity get the best of them. They watch me walk down hallways and up store aisles, their eyes on me, expecting an explanation. I could tell them about my cerebral palsy, explain that this is a disability I was born with, but there is never enough time to say the things I wish to.
No, I’m fine, I really don’t need your help.
I don’t know the exact type and name of the cerebral palsy I have.
No, you don’t need to speak to me slowly. I understand you just fine.
Sometimes I feel guilty, cowering under beady eyes. I feel guilty for the desperate way in which I do desire to explain myself to complete strangers, and then I remember that I shouldn’t have to.
Growing up I didn’t have access or exposure to people like me. There was no one with a disability acting on television, no songs I could listen to or books I could read that might have reflected my life back to me. Couple that with being a Black girl with a disability, the representation simply wasn’t there. The only disabled folks I ever saw on TV were the ones placed in front of a camera at telethons promising to raise money for disability research — the same telethons that were often criticized by people with disabilities for their negative attitudes about disability. We never watched a full telethon, but sometimes we caught them in between commercials. I’d sit impatiently on my living room floor, watching as the host stood beside a person in a wheelchair and told their story, sometimes crouching down beside them as they spoke in a belittling, babying tone. I remember thinking that these people with disabilities, the people the telethons choose to show and exploit, were not the only types of people with disabilities.
There is a sad truth known throughout communities of people with disabilities: exploitation. In lieu of telethons, a plethora of videos now make their way across various social media sites. These popular videos, known to some as “Inspiration Porn,” use the stories of people with disabilities and cut them into thirty-second clips with a dismissive and harmful caption along the lines of ‘Wow! I need to be thankful for what I have!’ Oftentimes these videos are shared with me by well-meaning friends and family. They expect me to be amazed by the man who can drive with his feet, the lady who is raising three kids without her legs and arms, and the child who excels at painting with a brush held in his mouth. These videos usually precede some sort of comment about how I shouldn’t feel upset over the hand I’ve been dealt, because other folks have it worse.
Here is the thing: the hardships of other people with disabilities don’t make me feel better. These videos don’t amaze me. They make me angry, because they are packaged to alleviate the misguided guilt of non-disabled people for not having disabilities. I used to announce that I was proud of these people with disabilities and of their innovation until I learned how ridiculous that very idea was. They never asked for my pride, and they don’t need it, because the act of survival doesn’t warrant the same immediate celebration for folks without disabilities. My loved ones who show me these videos don’t understand why they are so harmful. They’ve never stopped to ask themselves why they see a mere adaptation to circumstance as inspirational.
Disability Representation and the Problem with “Inspiration Porn”
Most of the “inspirational” videos exploit the idea of attitudinal “inspiration,” the expectation to always “look on the bright side,” but that is just not the way the spectrum of human emotion works. No one is happy all the time, everyone has bad days, and it shouldn’t mean that their stories don’t matter. These videos feed the dangerous and dehumanizing expectation that all people with disabilities should strive to achieve behavioral “inspiration” — by adapting to the world; i.e., driving cars or cooking with our feet, doing our hair with the use of one arm. We are seen as extraordinary for these very things when they are really just daily acts of living for many disabled people. These behavioral “inspirations” also lend themselves to the idea that those who have not adapted in the same way are somehow less deserving of support or praise. Those who do not comply are to be ignored and dismissed.
There is still little to no genuine media representation for people with disabilities, especially those of us who are also people of color. At 24, I’ve now stopped to ask myself how the lack of proper representation has shaped the woman I am today.
I wish I could say that I love this disability, that I have grown to accept it, but I haven’t. Not yet. I still pick apart the things I can’t change: the permanent limp, the aching knees, the hand with curved fingers. All the things strangers seem to notice about me first are also the things I used to wish away. When I go out in public, I feel like the main event at a circus, the lion without a tamer, pulling the attention of passersby, nervous as they fill the surrounding seats with baited breath. But I do not want to put on a show, I just want to blend in.
The older I get, the more my anxiety in crowded spaces builds. I can’t help the way my heart races if a set of eyes I do not know lingers a moment too long, or if the question “What accident were you in?” falls from the chapped lips of store clerks and strangers. Often these strangers demand conversations about disability that I never wanted to have. They assert a false dominance, or state their unsolicited opinion. Once, while headed to my college senior capstone class, I was stopped by a woman who insisted on helping me with a blue folder that had slipped briefly out of my right hand. After reassuring her three times that I was fine on my own, she became indignant, blocking the snowy path to my building with her worn-out boots and demanding that I be thankful for what she considered her “random act of kindness.” I let her yell, watched as her right hand found her hip and her nose reddened from the cold. I let her yell, tightening the grip on my folder. She soon walked away in a huff, and I spent the remainder of the day wracked with guilt, wondering if I should have just let her help me even though I didn’t need it.
My disability gives me experiences, confrontations, and responsibilities that I didn’t ask for. It is a constant reminder of the societal pressure to rise above bad days, both physical and mental. I am, after all, an “inspiration” — or so I am told. But I don’t want to be an inspiration, especially not the kind other people expect me to be. Their “acceptable” versions of people with disabilities are expected to be happy and grateful, and if we aren’t then we are “bitter cripples.” We are then cast away, dismissed for being “mean” and “angry,” because we don’t conform to the smiling, excited, happy-to-be-alive personas that people without disabilities tend to feel most comfortable with. There is nothing wrong with being a happy and grateful person with a disability, but there is something wrong with the exploitation that unfair expectations breed.
I’m often resentful of this body that I am housed in. I am not able to go through life constantly wearing my disability like a badge of honor. I used to have a reoccurring dream that I was a snake, eager to shed this skin to arrive anew, to rid myself of an arm and leg that felt like a parasite I couldn’t shake. I used to want a second chance, a second body to jump into, so I’d know what I was missing. Sometimes, I still do.
Around this time last year, I made a list of all the things I didn’t like about myself. It was 21 items long. Then I sent my closest friends a text message that read: “I have to ask you a serious question. I want the truth, so don’t sugar-coat it. How long did it take you to see past my disability after we met?”
I do not know what answer I was expecting. Maybe an affirmation of what I always thought was true, that I am an embarrassment to my friends, that I held them back in some way. I expected them to tell me that my disability was too much for them, the way it often is for me. I received variations on the same answer: It was never a big deal to them; it was a thing they noticed at first, and then it became something they didn’t focus on.
I felt relieved by their answers, but now I am unsatisfied with my own. Now I find I want to belong to a real community of disabled folks. I want to ask them how they learned to like and love themselves. I want to try and love myself, too, one day.
When a tweet of mine about including disabled girls in feminism blew up, my good friend messaged me and asked, “Is it weird/wrong that I don’t see you as disabled, I just see you as a person? I completely forgot about your disability.”
I paused for a moment. I know this friend well; we talk often about feminism and politics, pop culture and the college classes that changed how we saw the world. We sat behind phone screens with a three-hour time difference between us, and had the best conversation about disability I have ever had with a non-disabled person. I explained to them that this idea, while its intent may be complimentary, is actually erasure. Telling me or other people with disabilities that our disability is something to forget is just as harmful as when my Blackness is erased with the claim “I don’t see color.” The problem with dismissing or ignoring these things about me is that doing so feeds the idea that we should ignore the things that make us different — that we should feel shame and guilt just for acknowledging that we don’t all share the same privileges or lived experiences. My Blackness, like my disability, is something that everyone sees, and even on days when I wish the latter to fade away, it will always be there.
When parents scold their children for looking at me or asking me questions, I often urge them not to, because I want to be the one to tell my story. If we don’t allow people with disabilities to tell their own stories, we run the risk of letting “inspiration porn” be the only access most other people have to us. If we aren’t able to tell our own stories, perhaps we will be erased from history, our truth fading away one Facebook video at a time.
I do not want to be an “inspiration” because I’ve found a way to adapt and survive. If I am an inspiration, let it be because my words inspired someone else to put pen to paper for the first time in a long time. Let something I’ve said, created, or nurtured be the thing that inspires people. These are the things I am most proud of. These are the things I want to celebrate on my own terms.
Keah Brown reads a lot of books and watches far too much TV. Her work has appeared in Cactus Heart Press Literary Magazine, Femsplain, Saturday Night Reader, and Atticus Review, among other publications.