Yesterday, I received an email, which ended as follows: Of course if you don’t look disabled and feel ok then it is hard to maintain the argument you are disabled.
The email was from M, a corporate lawyer whom I first met more than thirty years ago at summer camp. I was best friends with his girlfriend-turned-wife, for many years, until we lost touch. Sporadically, over the years, we’d connect, usually over a family-related matter, good news or sad. Last summer, M and his wife also contributed to my crowd-sourcing Camino campaign, for which I was very grateful.
But this time I turned to M for legal advice, feeling increasingly out of my depth regarding a protracted issue that shows no signs of letting up. I knew that I could rely on his years of legal experience, his wisdom. M replied almost instantly – from the other side of the world. Some questions and comments volleyed back and forth until I stopped reading mid-sentence: “…if you don’t look disabled…”
My first reaction was sadness, which quickly turned to puzzlement, then to anger. I dashed off a quick reply, which included the refrain “yes, it’s complicated,” fearing that if I launched into a detailed response, it might have sparked a debate about what constitutes disability – and was I really disabled?
I thought it best to switch off my laptop and clear my head. I left the house and walked.
Solvitur ambulando. It is solved by walking.
What is it about disability that stipulates that people must “look disabled” and not “feel ok”? Indeed why do people who hear of my accident and sequelae, look at me in astonishment and exclaim: “but you look so normal and healthy”? The unspoken message seems to be: how could you possibly be disabled when you don’t look disabled?
In other words, if I feel ok, is it not possible for me to also be disabled? Or if I have a disability, is it at all possible that I might also look “normal and healthy”? Why are they mutually exclusive?
Would you say that Stevie Wonder and Ray Charles “look disabled”? Perhaps. Do they feel ok? Probably so, in fact I’d wager that they feel pretty darn good. What about Marlee Matlin, Itzhak Perlman or the late Terry Fox? Does Matlin look disabled? Does she feel ok? Well, she probably has her share of ups and downs; but yes, I’d say so.
Would you characterize them first as disabled – and then as the talented and skilled individuals that they are? Is Stevie Wonder the blind singer, or a world-renowned singer and songwriter that just happens to be blind?
What about Paralympians? Surely, qualifying athletes must meet strict criteria for physical impairment. Aside from their particular disability – wheelchair tennis players, volleyball players, swimmers – would you ever doubt that they might not feel ok enough to engage in such high-level competitive sports? Other than their handicap, even those of amputees, don’t many of them look normal and healthy? Would anyone dare ask South African Paralympic running legend Oscar Pistorius if he feels ok?
Which brings me to this: Isn’t it clear that disability is still and always defined in our society solely by the visual cues that we are accustomed to seeing; those that enable us to quickly differentiate those who are abled from the disabled (or differently abled)? When you think of a disabled person, don’t you immediately conjure up the image of a person who has a visible handicap – a wheelchair, seeing eye-dog, hearing aids, walker, cane, etc?
There are countless disabilities that are hidden from view: dyslexia, epilepsy, asthma, mental illness, hearing impairments. Would you think any less of Bruce Jenner’s success as a decathlete if you learned that he struggled with ADHD? Or the actor and game show host Howie Mandel, with ADHD and OCD? What about Frida Kahlo – who lived with constant pain while creating works of art?
Even though I juggle a handful of impairments – including a sitting disability (about which I’ve written before), a carrying disability and a limited ability to stand upright, in one place – I don’t consider myself disabled. Partly because I don’t identify myself as a victim or according to labels, and partly because I’ve simply learned to adapt. From the early days of my recovery, I had one choice: lie down all the time to avoid pain and stiffness; or get up, move, rest when necessary, ask for help – and figure out the rest one day at a time. So most of the time, I do look ok, not because I feel that way but rather because I don’t define myself by, nor do I dwell on, my disabilities.
But what if I told you that I do in fact possess a visual cue? It’s not an item that you would readily associate with disability; in fact, most people look at me quizzically when they see the large object I’ve tucked under my arm – while some dopey characters will see in it a joke: are you planning to take a nap? When I know that I’m getting into a car, bus, train or plane, I carry a pillow. Even though the pillow still doesn’t enable me to sit, it cushions my backside against hard surfaces when I recline. But who among us has ever seen a pictogram (prioritizing access for the disabled) with a pillow on it?
In the end, I decided to overlook M’s comment because (a) disability (and the other matters of law) isn’t even close to his area of expertise, and (b) I knew without a doubt that he was trying to be helpful. He couldn’t have known that ingrained in that comment was the kind of skepticism (or, worse, disbelief) that I’ve tried so hard to overcome.
He couldn’t have known that it mirrored the shadow of doubt that is cast each time that the subject comes up in regard to my life and challenges; nor could he have known that it speaks to a more widespread albeit unintentional ignorance, a byproduct of the fact that we’re socially conditioned to equate physical disability only with that which is seen. It magnifies our misunderstanding of disability and perpetuates prejudice towards people who live with a variety of physical and functional challenges that are invisible.
Truth is that even my body carries visual cues. However, they are concealed, behind clothes and skin; a protrusion in my lower back resulting from a still-displaced sacrum, nerve damage and pain all the way down the back of my left leg; a foot that would look crushed and disfigured if only the layers of skin could be peeled away. I now walk with a subtle but measureable leg-length difference, due to blunt trauma to my leg – which, at the very least, would allow me to qualify for the Paralympics.
Pain is chronic, spiking without warning. Two parallel lines resembling sutures permanently etched into the bottom of my butt are a stark reminder of the railway tracks from which I tumbled onto the rocks below. As you might imagine, these tracks are well-hidden, even from myself.
And yet, I feel ok.