
My best friendâs 5-year-old daughter recently learned that her muscles are difficult to move because she has cerebral palsy. The day my friend formally introduced her daughter to her diagnosis, her daughter couldnât wait to share the news. âMiss Kelly, I have cerebral palsy!â she proudly proclaimed over video chat. âAnd Mommy says you do too!â
Her confidence in knowing that her symptoms had a name that she could pronounce immediately struck me. Here was a little girl who inspired me, not because of her challenges but instead because she completely owned her cerebral palsy. I, on the other hand, hadnât been able to feel that same pride in my disability since I was even younger than she is now.
I felt wistful remembering that tiny sliver of my life when I too could proudly announce that I have cerebral palsy. Despite prolifically writing about life with cerebral palsy online, I can barely speak my own diagnosis aloud. Speaking the words âcerebral palsyâ dredges up years of shame, pain and internalized ableism â all of the emotions and memories I typically keep locked away in my heart.
But sometimes I wish I didnât carry so much shame and fear around my diagnosis. Sometimes I wish that I could lay my entire life story on the table and speak my entire truth, even to complete strangers.
Iâd tell them first that I was born with cerebral palsy. Iâd explain in the most unscientific terms that my body doesnât receive the right signals from my brain, so the left side of my body is stiff and weak. Iâd reassure them that if theyâre completely unimpressed with my description of CP or would like more information, I have plenty of resources for them to learn more.
Iâd then launch into a full rundown of my childhood. Iâd tell them about the earliest of my surgeries, the way I despised doctors so much I pretended to be âallergicâ to any doctor I saw, the constant stream of therapies that were presented as âfunâ but that soon made me realize I was different from my peers. Iâd explain the piercing weight of childrenâs (and adultsâ) stares, the shame I felt about wearing a leg brace, the isolation I experienced when no one knew what to make of me, my resistance to being defined by my CP when it was the first thing anyone saw.
Iâd explain how my last surgery changed me, how at 10 years old, I was adamant that my body was fine without another procedure. Iâd teach them about the emotional toll of having surgery as a preteen, the struggle of being old enough to understand but too young to consent, the brutal lack of control I felt as I grappled with going under the knife. Iâd tell them about the moment when I first experienced inaccessibility after surgery, the day that opened my eyes to the privilege I had. Iâd educate them about the physical recovery, the strength I had to regain, the exercises I never wanted to do, the sense of normalcy I craved as I fought for the same life I had failed to appreciate before.
Iâd tell them about the moment I stopped wearing the leg brace and started feeling like a typical 12-year-old. Iâd share how the comments and stares mysteriously stopped, how I began to present as able-bodied, how I started to hide my story in order to conform. Iâd explain that I finally felt free, that I delighted in my newfound able-bodiedness because I didnât know that I was fighting internalized ableism. Iâd tell them that I made friends and studied diligently and lived life unencumbered â except for the weight of my secret, my cerebral palsy.
Iâd explain that I kept up this ruse for nine years, refusing any help that was offered to me and pretending that I was able-bodied even as I began to experience physical pain. Iâd take them through my high school and college years, how I struggled to trust even though my friends never indicated that theyâd share my secret. Iâd admit that I secretly berated my body even as others praised it, that I cried myself to sleep at night because I hated living in this body so much. Iâd teach them what itâs like to be 16 and constantly in physical and emotional pain without letting anyone in for comfort. Iâd tell them about how I chose my words carefully in my college dorm so no one would know I was in pain, that I refused to attend physical therapy again, that I nixed the idea of a leg brace because I didnât want my roommates to see it. After all, that would require that I bare my soul and admit that I have cerebral palsy.
Iâd tell them about the post-college moments that changed everything â the months I spent struggling to find a job, the way my first temp job let me go because I couldnât use a letter opener and that was the only work they had left, the belief I held that I would never neatly fit into any workplace because of my CP. Iâd explain the depths of the fear I felt after the 2016 election, the way my disability identity felt even less âsafeâ than before, my burning desire to do something to tell the world my story. Iâd tell them the final straw â the moment I lost my dream job opportunity because I self-sabotaged, the moment I knew I needed to open up about my cerebral palsy.
Iâd tell them about those grueling days of committing my story to paper, the freeing moment when I shared with the entire internet that Iâm living with cerebral palsy, the way friends and strangers alike rallied around me. Iâd explain that I continued to write, to speak out, to process the shame and the fear and the internalized ableism in therapy many times over. And Iâd admit that the past three years of perceived openness have still left me closed, that I have a long way to go before I can speak proudly about my disability instead of just writing proudly.
Iâd tell them about the 5-year-old girl who just last week was proud and excited to share that she has cerebral palsy just like me, so it must be the coolest thing in the world. Iâd share how much she reminds me of my younger self, how fervently I want to access that part of myself that sees disability as sophisticated, beautiful and magical.
But even though I donât ever foresee myself leading with my disability and immediately sharing my entire life story with complete strangers, I know that deep in my heart, Iâm content with my identity as a person with cerebral palsy. Even through the years of fear, shame and ableism, I still see the magic of living with a disability, and I want to hold onto that piece of myself for the rest of my life.
source https://www.programage.com/news/What_I_Wish_I_Could_Tell_Strangers_About_My_Life_With_Cerebral_Palsy_1605054612127011.html
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