I am not blithely grateful for poor treatment and I won’t accept the bare-minimum of accessibility and inclusion. My love for myself is revolutionary.
This essay contains discussions of ableism and self-harm
By Imani Barbarin
I was 10 when I first came across the concept of inspiration porn. I didn’t know what to call it, but I knew it was expected of me. There had been moments during those early ten years in which I should have known—people cooing in my general direction and throwing money in my parents’ hands to “take care of me.” I was little, so I thought this was normal. I thought that it was common to have people stand close to your face and begin shouting because you had crutches and were “so brave.” I was annoyed, but thought it was customary for strangers to try and lift me off the ground to tackle steps instead of advocating for accommodations I could use.
Everyone wanted to be my hero for a moment but never for a lifetime.
At 10, during one of the few days in my afterschool program that didn’t fade into a blur, I decided to go for it. I had a counselor that was deeply religious and constantly prayed for me to be healed and be able to walk without my crutches. I can’t quite explain the thought process that led me to throw my crutches in the cafeteria trash can and run around the room without them, but soon that’s what I found myself doing to the exuberant cheers of my afterschool staff. I was elated—until I had to fish my crutches out of the trashcan to go home. Inspiration makes voyeurs happy for an instant, but at the end of the day you still have to live with the accessibility you need.
From then on, I began to notice the subtle ways people would remind me I wasn’t “trying hard enough.” Even those who weren’t there for that moment seemed to want to take me back to it. People asked “when are you going to get rid of those crutches?” and, “have they found a cure for that yet?” Questions from complete strangers harkened back to the moment when I rid my crutches for show.
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This moment sticks with me as one of the most shameful in my life. Performing a miracle or instant healing for an audience only made my mental health worse and made me feel like my only value rested in my ability to smile for a crowd. The more I smiled, the less people actually saw me. I lived with depression for ten years of my life and self-harmed. No one noticed because it was hidden behind the smile of an inspiration. It was a slow descent into bed covers and locking myself in my room. Before I realized it, I hardly ever went outside. I began to notice that with every interaction, people saw less of who I was and focused on who they needed me to be. My aspirations were cute and inspiring. My problems solved with a get-at-it attitude. My life became a perfect picture of the possibilities of a good disabled person. None of that was true, but for them it had to be, because if they dug into my pain even a little bit, they would see themselves at its roots.
I started coming out of the fog through self-advocacy. And that’s when my relationship with the ableds became complicated. Very complicated. The more I listened to different experiences of other disabled people, the more I came to realize that if I were to stand against disability discrimination, that I didn’t deserve the treatment I was advocating against. I was no longer ashamed of my crutches and spoke out on the impossibly high standard of being strangers’ motivation for surpassing mediocrity. I could no longer live like a doll, animating only according to the limited imaginations of people who made no effort to know me or what my dreams for myself were. I was no longer at the mercy of ableds’ infrequent and fragile benevolence, but was demanding their ally-ship without the promise of a pat on the back.
I was categorized as difficult and bitter. The more I talked about inaccessibility, the more “ungrateful” I was. The more I pointed out how stereotypes about disability harmed our community, the more I was accused of hating myself. They were wrong. It was only with the more I loved myself the more vitriol I received.
The more I loved myself, the less I was willing to accept toxic positivity that promised to heal me rather than help me exist in this body. The more I loved myself, the less I accepted momentary help at the expense of systemic change. The more I loved myself, the less I wanted acceptance from people who never bothered to know me outside of their own emotional need.
Fake friendships in which I realized I was the token began to fall away. Painful though it was, I began to become more comfortable in my own company. No longer did I have to turn my smile on for people who had spent a decade in my life without ever checking if the restaurants we went to were accessible or worry if they’d use their proximity to my disabled body to excuse their heinous actions.
People didn’t know what to make of me. The girl who was once kicked out of a one-on-one piano class for talking about her dolls too much now couldn’t stop talking about disability, inclusion, and accessibility. In the moments where I was supposed to just be Imani, I was the advocate. I couldn’t—still cannot—turn it off. The more people acted out of hatred for disabled folk, the more I wanted to force them to confront their own biases.
If “the only disability is a bad attitude,” then I am proudly a rude bitch.
Most of the pushback was expected. What I didn’t anticipate was the disdain I faced at the intersections of the communities in which I inhabited. Talking about disability somehow made me sound “less Black” in the Black community. Talking about race made me “divisive” in the disability community. Talking about reproductive rights made me the argument for or against abortion access, depending on your personal view.
While at the intersection of race, gender, and disability, I also felt like I could add too much and not enough to that list. It seemed the most affronting thing I could be as a disabled Black woman, was sure and loving towards myself.
Who I am is adversarial to every stereotype society believes about disabled people.
I am not blithely grateful for poor treatment and I won’t accept the bare-minimum of accessibility and inclusion. I don’t want to smile anymore or be used as life’s litmus test. I like my body and don’t begrudge it when it falters or falls. My love for myself is revolutionary because every indication says that love shouldn’t be possible, but here it is.
So, what happened to the ableds when I decided to love myself? Their inspiration escaped them and demanded humanity instead. They’ll get over it.
Imani Barbarin is a disability rights and inclusion activist and speaker who uses her voice and social media platforms to create conversations engaging the disability community. Born with cerebral palsy, Imani often writes and uses her platform to speak from the perspective of a disabled black woman. In the last few years she has created over a dozen trending hashtags that allow disabled folk the opportunity to have their perspectives heard while forcing the world to take notice. #PatientsAreNotFaking, #ThingsDisabledPeopleKnow, #AbledsAreWeird and others each provide a window into disabled life while forming community. Imani is from the Philadelphia area and holds a Masters in Global Communications from the American University of Paris, her published works include those in Forbes, Rewire, Healthline, BitchMedia and more. She runs the blog CrutchesAndSpice.com and a podcast of the same name. She currently serves as the Communications Director for a nonprofit in Pennsylvania.