Where We Stand

I am recurrently disabled.

Or, if you prefer, I am recurrently temporarily able-bodied. Whichever way one prefers to describe it, the facts of my life are these: I am, for much of life, effectively (physically) able-bodied. And then there are times that I am not.

Monday morning, I fell on the stairs and ruptured a cyst on my spine. I fell because I have only partial feeling in my left foot, which causes me to fall with some frequency—a numbness that was caused by nerve damage as the result of a herniated disk, which itself was caused by the cyst. That is what I call, with a caustic grin, my Circle of Bullshit.

The cyst has ruptured so many times since it first arrived not long before my sixteenth birthday that, despite the pain of it, I consider it more an aggravation now than anything else. I know it will mean days, sometimes many days, sometimes only a few, of being unable to sit upright, because the pressure on my spine is too agonizing to bear. It means days of interminable boredom and loneliness and the tedium of making sure it heals right, from the inside out, since it has left a permanent hole in my back.

All of which I share in order that you may understand what I mean when I say that when my body doesn't work, neither does my life.

Occasionally in this space—and incessantly in others—there is expressed a particular bit of disablism that goes like this: "To accomplish X, just do Y. That's what I do!" Here, it is likely to be found in threads about the OH NOES! Obesity Crisis, particularly regarding the procurement of fresh foods or in the course of some admonishment about losing weight; elsewhere, it's likely to be found, well, everywhere, anywhere there is an opportunity to judge someone for failing to do what someone else thinks zie should be doing.

There are many reasons that people aren't able to "just do Y," whatever Y may be. Commonly among them are poverty and disability, and their frequent intersection.

Or, rather, the institutional, structural, comprehensive failure to support people in poverty and people with disabilities able so that they are able to achieve the same ends as Y, whatever Y may be.

The decision we've made as a culture, particularly with regard to people with disabilities, is that they will design their lives around the programs available to them, and, if they want a specific type of basic opportunity or basic access that is not available here, they understand they will have to move there.

Which really only works (such as anything so inherently marginalizing can be said to "work") if we erroneously regard disability as a constant that never mutates, never changes.

And if we assume that no one who is currently able-bodied will ever become temporarily disabled—or permanently disabled, and have the unmitigated temerity to expect to continue to otherwise live the same life zie was living before.

It's not the life inside my house that doesn't work when I am temporarily not able-bodied. It's the life outside my house—the one that has no accommodations for people who can't drive, no buses, no trolleys, no public transportation at all; the one that regards disability as a black-and-white, you-are-or-you-aren't issue, that doesn't have "temporarily disabled" parking or any other "temporary disabled" accommodations; the one that assumes if you need a service, you'll know how to get it, where to go, who to see, and have some way to get yourself there (and be disabled "enough," or in "the right way" to qualify); the one that is steeped in prejudice which allows people, even people who fancy themselves good progressives, to judge others, to say things like, "Zie doesn't look disabled," or "Zie could obviously do Y, but is simply too lazy or stubborn or uncreative or unmotivated."

The thing is, that external life only doesn't work for me sometimes. But if my disability were to become permanent, it wouldn't work for me all the time, and I would need to change my life so that I lived in a place where the external life would work for me.

And that would take some time.

Forget laziness, or stubbornness, or a lack of creativity or insufficient motivation: It would take a long while to sell my house and relocate, and I don't even have the additional consideration of finding another job, since I can do mine from anywhere.

There are tens of thousands? hundreds of thousands? millions? of USians who are not living in optimal circumstances for their level of ability, but are nonetheless stuck where they are, in a situation that might make doing Y unreasonably difficult, or outright impossible.

Since living a life of cyclical disability, I have lived in Chicago, Edinburgh UK, an affluent Illinois suburb of Chicago (living with a monied friend upon our return to the States), and an exurban Indiana suburb of Chicago. And the absolute worst place of those to be temporarily disabled was the affluent suburb, the message of which seemed to be: Look, we've got wheelchair ramps, but if you need more than that, you're probably better off moving someplace else.

Even being rich can't buy institutional support. Not if there isn't political will.

Political will is driven by social conscience—and our conscience at the moment seems to be in a state where we have no compunction about being shitty disablists. Disability policy is not remotely my strong suit, and I will leave that leadership to people more knowledgeable than I. But I do know a little something about what it takes to create political will, and so I want, as the first order of business upon my return to this space, to remind everyone that judgments about individual ability, opportunity, and access are off limits.

And they are off limits for a reason: Because standing in judgment of the lives and circumstances and bodies of other people, to pretend to know about them what we cannot possibly know from a casual glance, to draw conclusions about what we might not see, is just as deeply bigoted bullshit as is asserting to know something about them based on their gender or sexuality or the color of their skin.

Refusing to stand in judgment is instead to stand in solidarity, the sort of solidarity in which political will is born.

If we want a world in which everyone can do Y, the first step is rejecting the premise than we can assume with certainty that anyone already can.


I am slowly returning to what is normal for me, which is a privilege. My profound thanks to the other contributors and moderators who were under no obligation to keep things hopping while I was away, but did nonetheless.

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