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.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
“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.
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.
Not in the least off topic. I agree heartily and with a tender heart. I’m so in love with my boy because he is such a profound teacher. Truly.
Thanks for your lovely comment!
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.
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.
Wow. You got me teary.
And I agree that our culture can often be the one that’s “disabled.” We’re addicted to speed and consumption and numbing ourselves. And all too often we have language that separates us rather than bringing us together.
I feel like one of the lucky ones. I got some heavy lessons but I’m humbled and honored to have had them. I’ll continue to try and be more like my boy and less like the adrenaline crazed culture that surrounds me and us.
Thanks so much for your kind words.
Melissa, this article really stuck with me this week. I’ve read it several times and it’s really affected me at the core, I have to say. I’ve been meditating with what you’re putting forth here, still processing it in many ways. I think it’s really good stuff, and shining light on how many key issues come together in a way that I feel is valuable in making good progress in reforming our perspectives around these complex issues.
To me, that’s what really needs reform, how we are perceiving issues, as well as how we are speaking and communicating about them, as you say. Simplifying for clarity, being open to how we are interpreting others, but certainly not to dismiss the challenges of “fixing” a broken system and society (however that would occur), where we all *seem* to be speaking the same language, but at the same time, it’s a bit of the tower of babel syndrome. Same words, different meanings, connotations, and energies around their intention. It’s such a multi-dimensional issue.
Right now, we (in general) seem to be quite scattered in this regard, unable, for some reason, to communicate with clarity and neutrality, and thus focus is sacrificed. I would guess driven by anger, fear, those kinds of emotions, also competition. That’s my hit, anyway. I think you are creating a really neutral and astutely synthesized cohesion with this article that to me, feels very clear.
I tell you this because in my estimation, you are really putting together a lot of really rich information that I feel adds up to what is vital–how we relate to each other through language, specifically. In the family, in social and professional communities, online and offline, etc. Social norms/expectations vs. inner voice/heart’s desires, they rarely coincide these days.
Who’s to say who is doing it ‘right?’ I believe that’s between a person and their own heart and spirit, and has nothing to do with the assessment–judgmental or otherwise–from others.
To me, a healthy community is one where we are encouraged on our paths, whoever we are and however we do it–not have it sabotaged by social invalidation via labels that lead to personal and social disempowerment. Unfortunately, that’s what we have now, and I’m sure we’d all here agree that it’s brutal.
I feel your take on these issues is a light at the end of that tunnel, where we have an opportunity to create a better society from a new perspective, exploring the different dimensions of language, disability, and relationship which you put forth.
I’m thinking about all of this quite a bit, thanks to having read your post.
I look forward to the next installments!
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.
Wow. Such deep thanks, here. And you’re so spot on. When I first began writing for MIA, I was deep in the landscape of withdrawal. I was in the river and doing my best to simply keep my head above water. I’m so happy to know that what feels like an internal shift of more clarity and balance is indeed being reflected in my writing.
And my heart goes out to you with your statement of frustration, stress and relentless depersonalization. It’s a horror that only those who’ve been there can truly understand. Despite your experience, you’re incredibly clear, lucid, compassionate and incisive with your words.
All the best and may there be steady increases in well-being for you.! It may be slow but my hope for you (as with me) is that it’s up, up, up!
Thank you for this beautifully-written and thoughtful article.
Ah, Ted. Thank you, kind sir.
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.