It wasn’t until I was around seven, I think, before I knew how to ask the question, “Why am I disabled? What happened?” No one– at least no one worth taking seriously– remembers when they were born. And I don’t remember exactly when my parents sat me down and explained to me what happened during the first few minutes of my life; in all likelihood, it was a question that I asked several times before I really understood the answer. “Before you were born, you were doing flips in Mama’s belly. You were upside down, and you had the umbilical cord around your neck,” they explained. “The doctor didn’t know this, though, so he gave her medicine to help her relax.”
Shortly before I was born, one of the anesthetics that the delivery room doctor gave my mother to prep her for her C-section had also knocked me out; I lost oxygen for nearly a minute, most likely because I was being strangled by the umbilical cord.
However, by the time I was born and the doctor spanked me into sentience, I appeared to be a normal, healthy baby boy; it wasn’t until I was twelve months old before my family learned that I had cerebral palsy.
Among people with CP, my story is fairly typical: It is, almost exclusively, a disability caused by a trauma during birth, and its symptoms are not immediately perceptible. But I also know I am incredibly lucky: I can walk without assistance; I can drive a car; I can live independently; I can speak effortlessly; I can even occasionally sing on key. Sure, my disability is a major pain in the ass: I spent much of my childhood recovering from major surgeries, which my parents and doctors would euphemistically call “shark attacks,” and in physical therapy. I’m still clumsy; my balance is terrible; my nerves are sometimes shot; I fall frequently; I walk with a pronounced limp; sometimes, my hands and fingers become so tight that I can’t write. But I know it could have been much worse, and in comparison to most people with CP, I am able-bodied.
I’m also fortunate because my disability does not affect my cognitive abilities, though I’m sure that some of my political critics may still be skeptical. Even at the risk of sounding pretentious and arrogant, I’ve always tested in the top 1-3% on IQ tests– real tests, not the ones you take online. To paraphrase the late, great Louisiana writer Andre Dubus, I may inhabit a “broken vessel” of a body, but my navigation system is fully operational.
CP affects people differently; it is, in many ways, an umbrella diagnosis. As a kid, I never knew any other disabled kid who was like me, and this reality– the notion that my condition was one-of-a-kind, that every other kid I knew with CP was also afflicted with a severe cognitive and intellectual disability– sometimes made me feel isolated and awkward.
During the next few days, I will introduce you to Ashley Volion, a 28-year-old woman from Louisiana who, like me, has been living with CP for her entire life and who, like me, has refused to allow her disability from preventing her from receiving a stellar education. Ashley’s heartbreaking story starkly and definitively reveals something I’ve been wanting to share for a long time, something that she can tell much better than I ever could. Her story also reveals the moral and ethical failures of Governor Bobby Jindal’s administration, President Barack Obama’s administration, and the systematic ways in which government policies have trapped disabled people into cycles of dependency.
I am beginning by disclosing my own story, because I want to make it abundantly clear that on these issues, I am personally biased; I empathize with and am incredibly proud of Ashley for her willingness to speak truth to power.
She has a story you need to hear.