When my son was born six years ago, the word “disabled” was suddenly all around me. It came from everywhere – the nurses, the doctors, the physical and occupational therapists, friends and family. I remember looking into his ice blue eyes and so marveling at the lines of white that extended so symmetrically from his irises that I began calling him Star Boy. I felt a new mother’s sense of protection. The label surrounding my Star Boy was a smoke so thick I felt I could barely breathe.
Disabled. My boy with an extra chromosome was disabled. He wore a label that expressed negation, a subtraction. He was defined by the world at large by the Latin prefix denoting “apart,” “away,” or “having a privative and reversing force.”
Three years later, disability again arrived at my doorstep in the form of an endless supply of benzodiazepines. I became sick. But the language was not one of subtraction but of addition. There was a strange reverence from my doctor – an assurance that these pills would restore the health and vitality that had disappeared along with the sleep that had slipped out the back door without a word of explanation. With sleep, I was told, would come health.
There was no discussion of the possibility of dependence or of the privative action these drugs would have on my brain and central nervous system.
A year later, when the falls and cramps started to come, when my memory was a singular field of white, when I was so strangled with exhaustion and despair I could barely function, I recognized the presence of disability. And it was in me.
I’d been a runner. My legs now folded beneath me at surprising moments. I’d loved to cook Thai salmon and pumpkin bread. I could now barely eat much less gather enough energy to follow a recipe. I’d been a professional writer. Now, my scrawl was slanted and wild. I was no longer the person I’d known. Parts of me had been subtracted. The pills that my doctor had so enthusiastically prescribed had had a negative and reversing force. I was, without question, disabled.
Suddenly, I was chewing on the question of disability in a new way. My son came out of the chute and landed on a label that was culturally prescribed. He’s deemed disabled because he’s “retarded.” The word itself means slow, which is nothing more or less than itself. My Star Boy takes his time. He’s a slow foodie and he moves through the world at a speed that can also be described as languid.
Culturally however, to be retarded is an epithet. It’s the language of being “less than.” You’re Other. With the arrival of my son came the awareness of how easily we use language to set things apart. His label garnered him federally mandated therapies. It also created a perception that he was less valued in our culture. I couldn’t help but wonder what it would be like to transpose him into another culture, one that valued the intelligences inherent in his particular genetic coding. A Shamanic culture, perhaps? Or one where value was placed less on becoming a viable cog in the economic machinery and more on love, gentleness and honesty.
It was my own slide into disability that showed me the trick of language. I wanted the term “disabled” to be applied not just to my condition but also to the culture that so casually dispenses disabling medications. Who I’d been was erased because of casual and negligent prescribing. I was no longer a functioning mother, athlete, writer or participant in the world. I wanted the term “disability” to be recognition that something profound had been taken away from me, as it had for so many.
With my son, nothing had been taken away. In my mind, he was different, but he was not other. He had arrived in this world with qualities that are different from mine. He cannot add or subtract. He cannot spell Mississippi. He also cannot cheat or lie or conspire. He is whole and complete and simply different in the qualities that define his character and his way of moving in the world.
In thinking of the power of language, I know that words give us a particular set of eyes. If we don’t have a word for it, we don’t see it. Aristotle knew this. He believed that language was like a stamp that placed meaning into wax.
But if we look closely, the way we use language also exposes our injustice and our inhumanity. And herein lies the rub. With my son, the term disabled has the cultural connotation of being “less than.” In its use for people with different abilities, the term broke my heart with its injustice. But when I had basic human functions subtracted from me because of improper and unconscious prescribing, I felt the label could expose injustice, not perpetrate it. Properly ascribing the term “disabled” to people who suffer iatrogenic illness could give our culture eyes to see something that remains — to this day — relatively invisible.
As (recently labeled) Nobel laureate Wole Soyinka said, “For me, justice is the first condition of humanity.” And for justice to truly flourish, we must look carefully at how we use language.