Month: October 2018

We, the Persons

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It happens more often than you’d think. I’m scrolling through a piece of writing relating to policy or human rights, and I see it: “persons with disabilities.” It’s not something I find in much mainstream writing, but in the non-profit and government worlds, it’s ubiquitous. Though I’ve come to expect it, it always stands out to me in the most distracting way. It conjures other phrases, like “persons unknown” or “persons of interest.” It’s clinical and cold. It feels archaic and, especially outside the context of law, dehumanizing.

It seems like everyone else gets to hang out at what passes for the cool table, under the “people” umbrella. (Boy, that bar is high.) We don’t typically talk about persons of colour, or LGBTQ+ persons, or persons with low incomes. Governments don’t commit to supporting “working persons.” Politicians don’t address the “persons of this great country.” Democracy is not “by the persons, for the persons.” That would sound odd, if not incorrect. At best, it would be out of place, and give people pause.

I’m not usually a splitter of hairs when it comes to small linguistic details, unless I’m wearing my editor’s hat. I tend to think that while language has immense power, the sky isn’t likely to fall if someone refers to me as, say, “visually disabled” versus “visually impaired.” I may have a preference, but it’s a personal one, unlikely to inspire whole blog posts. You say tomato, I say “Who cares?”

There is something about “persons with disabilities” that continues to annoy, no matter how many times I come across it. Unearthing the phrase buried in legislation is one thing, but when I see it in a recent piece of writing, I can’t help but shake my head. Why haven’t we joined everyone else? Why have we yet to gain full “people” status? Why are we still being referenced, in a surprising number of documents, using a term that is jarring and isolating for no good reason? Are we destined always to remain in a medicalized category of our own, somewhere just to the south of “people?”

It really is a very minor detail, I know. Most people will look at “persons with disabilities” and not even notice the strangeness of it. Others will notice, and not care. I’m sure many people with disabilities (see what I did there?) will read this and shrug. There are bigger fish to fry, certainly–more important quibbles to discuss, definitely.

But my favourite thing about minor details is that they are so simple to fix. The complex issues are hard to solve, and I’m in no position to do much about any of them. What I can do is make sure “persons with disabilities” never creeps into my own writing. I can encourage my clients and coworkers to start thinking of us, and representing us, as a group of people much like every other. I can point out how bizarre it is to cling to such an outdated term, and hope that it will one day become a rare one.

If you’d like to see “persons” with disabilities become a relic of a society that really did view disabled people as less-than, instead of a phrase we cling to with bewildering obstinacy, you might consider joining me in this modest quest. I’d be more than happy to hear about your progress, pushback and all.

Wait!

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“What’s it like, being disabled? As in, day to day?”

For a long time, this question stymied me. I had no frame of reference, no way to start with “normal” and paint a picture of what “abnormal” might look like. I could describe specific obstacles, particular incidents, but I had no sweeping, instantly relatable analogy–no lens to capture what this life is like when it’s the only reality I’ve ever known.

Many have taken a crack at this tough little nut, and come up with innovative ideas along the way. Being disabled, some say, is like playing a video game on the highest difficulty setting. Others say it’s like navigating an obstacle course while everyone else uses a sidewalk. Some of us resort to hiking metaphors. Your path is wide and smooth; mine is a rocky, treacherous trailblaze of a life, which manages to be as hard as people assume, and at the same time, much easier.

It was not until I stood on a slushy street corner, waiting for an unusually long light to change, that it hit me. I had found my personal metaphor, and it was one that covered an astonishing amount of ground in the simplest way.

Being disabled, I realized, is a lot of standing on the corner, waiting for the world to decide that it’s safe for you to cross. My life as a disabled person involves a lot of standing still, watching cars fly freely by, wondering when the light will turn green long enough for me to make some headway. Since the system is more complicated than I can wrap my head around, and there’s no handy countdown, I have no clear idea when that might happen. So I wait, getting increasingly cold and impatient, for a path forward. Some days, it feels as though the world is filled with cars, and I am the only pedestrian in sight. They are roaring along while I walk and wait, walk and wait.

I wait for accommodations to be put in place. I wait for my paratransit ride to show up. I wait for technology that promises to save me. I wait for people to decide I’ve proven myself worthy. I wait for attitudes to change, for fears to be calmed, for unreasonable limits to be stretched. I wait for accessible products in a world where nothing is designed for me—nothing I can afford, anyway. I wait, sometimes quietly, more often restlessly, for the world to make room for me.

Then, when the waiting becomes too much for me, I try to jaywalk. I barge right into the unsafe spaces, the heavy traffic, the uncharted territory. I might get a warning or a slap on the wrist or even an angry honk from someone’s horn; occasionally, I retreat to my corner, chastened. I am foolish and fragile. I must be protected from myself, and from shadowy figures who would exploit me. I must be patient. I must be understanding. I must realize that change doesn’t happen overnight. I must not ask how long this light will stay resolutely red. I must not point out that everyone else seems to be cruising while I am plodding.

All in good time. Soon enough. Someday, if you go the extra mile.

Walk and wait.

Every now and again, that light turns green and I make real progress. Barriers are overcome, and my journey picks up speed. Life comes so easily that I have time to forget, if only for a few moments, that I was ever a lowly pedestrian in a dangerous network of drivers. The reprieve might even be long enough for me to point at other unlucky foot travelers, and to wonder loudly what they’ve done–or left undone—to leave themselves stranded at the corner.

Inevitably, that light turns red again, and I remember what it is to stand still, thwarted by incompatible software or a narrow-minded employer or a skills gap. There’s always something, and that something brings me back to the corner, where others can gawk at my inactivity and imagine how I brought it on myself. And it’s back to the waiting game.

With too much prodding, the metaphor falls apart, as so many of them do. Living as a disabled person is typically far less passive and futile than this framework would suggest. There is worthwhile work I can do while I stand on that corner. I am not a helpless victim of a static system, and I can certainly jaywalk if I wish, with the result likely to be rather tamer than death. Disapproval and societal exclusion aren’t quite as dramatic as an altercation with a speeding car, and I’m seeing genuine, lasting steps forward all around me. I am more welcome, more respected than I have ever been, and it’s not all down to my own advocacy.

Nevertheless, I use this comparison because it explains why the hurry-up-and-wait nature of living with a disability is so interminably frustrating. While my every success feels hard-won and snail-pace slow, my nondisabled peers seem to sail through most challenges, hitting so many green lights they don’t even notice I’ve fallen behind. For them, a red light is an inconvenience, not a brick wall, and no one is telling them to take those red lights gracefully. Meanwhile, I’m reminded to be grateful I’m allowed to cross at all. Commonly enough, the criticism comes from fellow disabled people, who are quick to condemn and still quicker to remind me that it could be worse.

I work toward a world in which I’m not always suspended in mid-stride, waiting for something to change or improve or move out of my way. I hope the next generations will know less and less of what it is to fall behind not because they are moving too slowly, but because the rest of the world hasn’t caught up. As I anticipate the birth of my first niece/nephew, I wish with all my heart that should they face barriers similar to mine, they will not need to be so patient and gracious and grateful. And I hope that, when the time comes to jaywalk, to break the rules and challenge the status quo, they will have the courage to do it, and the good fortune to emerge triumphant.

If you ask me, that future is definitely worth waiting for–but sooner rather than later, please.