My grandmother showed me how to surpass the expectations that the ‘medical model’ had set for me. I was born with bleeding on the brain, which caused me to develop a type of cerebral palsy known as spastic quadriplegia, which affects both the arms and the legs. Early in my childhood, I received inadequate medical care because of instability in my family life. When I was 7 years old, a court granted custody of me to my grandmother on my father’s side, and my life took a turn for the better.
I can’t imagine what it must have been like for her then — at 67, when she should have been enjoying some leisure after all her societal toil — taking on the responsibility of raising a young child, let alone a physically impaired one, in an ableist society.
In spite of those circumstances, my grandmother determined to give me the best chance for succeeding in a world committed to maligning people who look like me. She did not care about the barriers put before us, and she instilled in me a fire to engage and push through them as she did.
My grandmother enrolled me in physical therapy, which I received in school and at an outpatient center a few times a week. Before long, I was getting around with a walker, then on crutches. My gait was abysmal — my legs were bent and my heels were raised off the ground. My posture left much to be desired. Still, it felt wonderful to have that kind of mobility, however limited, especially when I thought about all the other things I could not do, like tie my shoes. My grandmother, though, had grander ambitions for me and my life with cerebral palsy. She wanted me to know whether there was any possibility at all of me walking short distances without my mobility aids.
At one point we went to see my pediatric doctor. He told us in no uncertain terms that if I had not already walked — at 7 years old — that I never would. My doctor wasn’t entirely wrong to think this; every time I tried to stand on my own two feet, I would almost instantly fall to the ground. My doctor’s prognosis was informed by what is commonly called the “medical model” of disability, which among other things distills disability down to an individual’s body. It is highly quantitative, using empirical data about the body to arrive at an account of a particular disability. Needless to say, my stats weren’t stellar.
My grandmother was enraged by this visit, and as we left the office, she looked me straight in the eyes and told me something that has become my personal mantra ever since: “Don’t you ever let anyone tell you that you can’t do something.” Our determination was reignited. Each day after that, my grandmother would put me through exercises to improve my mobility. She would put two chairs inches apart from each other and have me try to walk from one chair to the other. I failed repeatedly to take a single step. We would engage in this exercise tirelessly and though it felt like it took eons, I was eventually able to take a single step without falling to the ground. Soon one step became two, two steps became three, and then I made it from one chair to the other.
My training soon involved greater distances between chairs. And I improved. Even though my form when I walked wasn’t “normal,” I was defying the expectations of my doctor and by extension, the medical model of disability and its judgment of my body’s capabilities. I had done the seemingly impossible.
On one day, I found that everything just clicked for my body. I began walking even more. Given the inability of my muscles to maintain an erect posture I had to keep going forward or risk falling. When I was on the move, it was always from one piece of furniture to another so I could brace myself. The feeling of such movement, movement that my body had supposedly denied me, was exhilarating. No matter the so-called deficiencies of my movements, they were mine.
My grandmother, my sister and the rest of the people who surrounded me had tears in their eyes that day. Those whose ableism has religious undertones might say that my breakthrough was a gift from God. That may well be true, for who am I as a mere man to shun such an idea from the world of possibility?
Reflecting on this day now, however, I have a different understanding of it, one that doesn’t include the language of “miracles” and “cures.” I do not deny that the medical model of disability has a degree of legitimacy; it’s true that the muscles in my body have spasticity to them that an able-bodied person’s does not. But the medical model does not have a monopoly on disability. To reduce a disabled person to an aggregate of figures, without affording them a more holistic framework to operate in, is to commit a kind of dehumanization, one that is legitimized by its grounding in medical science.
No, to respect our humanity and to see disability as robustly as possible, one must remember the subjective aspect, which means being mindful of our social relations, our thoughts, our feelings and everything in between. Only then, can one truly begin to apprehend this phenomenon in our world we call disability.
I still am and forever will be a disabled man: I need to traverse the open expanse of the world on crutches, and many who see me doing so will make a litany of assumptions, each one more prejudicial than the last. I will still be dismissed as defective by some and fetishized as an inspiration by others. I will still deal with discrimination. But when I am able to get up from this chair and walk the way I walk to my bed, I can lie down and shut my eyes to such bigotry for the night. I can be lulled to sleep in the knowledge that my relationship with my body is not imposed on me by others, by ableism and its machinations. It is in my sovereignty, a relationship I get to define and affirm.
And I affirm that my body is beautiful. I affirm, despite the medical model that classifies me as abnormal and sets the limits of my body’s possibilities, that it was the hearts of all those who embraced me and exalted my humanity that allowed me defy those boundaries, to cross those borders and walk into the open terrain of human freedom.
John Altmann is a writer. His essay, “I Don’t Want to Be Inspiring,” appears in the new book, “About Us: Essays From The New York Times Disability Series,” edited by Peter Catapano and Rosemarie Garland-Thomson, published by Liveright.
