A Discussion of Labels, Part One: Disability

Melissa Bond
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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.

 

13 COMMENTS

  1. “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.”

    This reminded me of a ‘christening’ that I attended once. I was an outsider and was invited to sit at the big table with all the leaders of the community. I chose to sit and have my lunch with a young man who was obviously disabled. Someone said to me that I had been a little rude not sitting with the ‘big men’ of the community. I explained that I had learned more about that community from that young man, than I would ever learn about it from listening to the ‘big men’ tell me about how much good they were doing.

    If you want to know how healthy a culture is, look at, and listen to, how they treat their most disadvantaged.

    I’m probably off topic here so feel free to remove this comment.

    Thanks Melissa

    • Boans and Melissa. I work as a substitute teacher and youth worker with ” at-risk.” I have recently worked in “mentally impaired,”” inter-city”,” and today, an autism classroom. Pretty nice kids. Two could read and shoot baskets. Over all pretty pleasant people along with the staff.

    • “If you want to know how healthy a culture is, look at, and listen to, how they treat their most disadvantaged.”
      The state was created not to protect the least among us against the powerful but to protect the powerful from the disadvantaged masses. Everything which goes against this principle is a good thing and one to be guarded and preserved against constant attack.
      People with disabilities are scary for some and can be easily painted as the other and an easy scapegoat.

  2. Thank you for your thoughtful insights. I agree with you on the powerful effects of labels. We are so socialized into using labels that we often don’t see it’s powerful effect. I agree with you that the word disability sends the message that this person is “less than” others. We all come to this earth with various talents, abilities, and struggles. Yeah, your son is different, but aren’t we all different from each other? Why does your son’s difference have to be labeled while my differences go unnoticed? And, although we are all different, we share a common humanity with one another. I love this line from your article : “the way we use language also exposes our injustice and our inhumanity.” This inequality has become so normal for many of us in our every day language that we won’t notice it unless we take the time to think about what we are really saying.

  3. I think we’re as confused by the word ‘disabled’ as we are with the word ‘enlightened.’ There are many times were I feel the latter could sub for the former. I have my own perspective on this, but I won’t go into that semantic debate now.

    Mainly, I want to say what a moving and insightful article I feel this is. Perhaps going too fast and missing out on life is more of a ‘disability’ than taking one’s time and allowing each moment to process thoroughly, as it sounds from your description is your son’s nature. I totally admire this, and feel that he is providing a good example for others. We are all creative beings, with an infinite capacity for love, despite our individual and unique ways of communicating and processing. We’re ALL different, in this respect.

    Indeed, those we label as ‘disabled’ are, in reality, our best guides and teachers. As long as my teachers are kind-hearted and authentic, I strive to treat them with the utmost respect.

    “He is whole and complete and simply different in the qualities that define his character and his way of moving in the world.”

    I was elated when I read this sentence. He’s so lucky to have you as his mother, and vice versa, from what you say! Just beautiful, thanks.

  4. Melissa–You really keep putting two and two together and coming up with new insights, and really seem more and more on track all the time, steadily, from the time of your first efforts to describe your horrible trials with misinformation and, at best, spotty attention from your physician. How you embrace your parental responsibilities and bring out the unproblematic side of what’s natural about loving and caring for your son definitely inspires those of us who are reading for knowledge of what to do right amidst so many reminders in our own expereinces of what is done that is wrong. Anyone trying to rely on the tyranny of the majority in behavioral healthcare certainly has no ends of lessons to learn about semantic games, and your getting into the think of it without acting like a person with a hammer who see nothing but nails. You’re not letting your ideals get ruined, and offering up the messages that go with your efforts in that way.

    I wouldn’t want to suggest anything different than your current angle on your own or your child’s or anyone’s life problems, that you know or could imagine knowing. I would like to share that it is fine with me to take my problems (with intense stress and frustration, depersonalization that let up but never quits, guesses about drugs, etc.) as the fact of disability. I fully understand someone having other ideas about that, but in my case it would have been vastly superior to expereince someone ever saying something like “you seem incapacitated by some mental problems, partially” or ask and use the such words, compared to what actually goes on in all the clinical settings I’ve known. No one has ever attempted to become an expert on my lived experience or acted like caring about my onw case could have motivated my questioning attitude. Only the exact opposite, and much worse has ever gone on, to the point of farce, with a number of exceptions that could never be thought to make up for the injuries and lack of good done. I’m sure you can believe this and also that–to me–it’s just horrible that mental hospitals operate 24 hours a day with the dominance of influence that they hold over their patients freedom and wellbeing, and that it’s considered valid not to get to know them as equals.

  5. Melissa–Sorry about the wealth of grammatical ambiguity from all the typos above. But I think what I was going through really having trouble expressing is not totally leaving me offline today. The guiding feeling, which re-awoke in me finally, from what you say about your Star Boy, for me, is just the thought of “Congratulations”. That’s the most natural response to happy, affectionate Mom’s and it is difficult to understand someone else’s needing love and respect explained, since how can the matter of difference in potential abilities obtrude on that? I guess that what people want who can’t look straight at challenging mental differences, of one kind or another, and still see the good life probably just is a label to make it all officially OK. Thanks for doing your work on considering labels in such a personal way.