A Frantic Improvisational Game Where the Points Don’t Matter

by David Preyde

A graphic with a quote from David Preyde. It says, “Now, when you’re disabled, you are made to feel that you’re a burden. You’re made ashamed of needing things, of needing help. My wife and I call it ‘the shame of existing.’ I suspect all disabled folks have it, to a certain extent. It’s dangerous, because it’s so constant, and it’s easy to stop noticing, and it’s easy to internalize." —David Preyde, A Frantic Improvisational Game Where the Points Don’t Matter

All right, doing anything as a disabled person is bullshit. Going to get groceries is bullshit: if you’re autistic, like me, it’s too bright and too loud and too crowded. If you’re in a wheelchair, like my wife, half the food is out of reach. Walking down the street is bullshit- too loud, too crowded (for me), or nobody pays attention to you and bumps into you or blocks you (my wife). Hell, my wife almost got her ass killed trying to get off the subway, because the gap between the platform and the train was too big.

This is just ordinary, everyday shit.

Then you add parenting into the mix, and that’s a whole different thing. People don’t even think disabled people can have sex, let alone parent, and so the whole system of parenthood- everything from doctor’s appointments to daycares- simply isn’t set up for us. Everything we do is a mad scramble, a frantic improvisational game where everything’s made up and the points don’t matter.

Anyway, my wife and I are smart as hell, and resilient, so we made it work. We found a groove. My wife is the face of our relationship- she deals with other people, and does the detail work, and generally makes sure our lives keep running.

And I help keep my wife keep running by helping her out with all the physical stuff that needs doing; the stuff she physically can’t do. It works. Together, we are a full person.

Then a global pandemic struck, and holy shit. As if there wasn’t enough goddamn stress in our lives, we had to deal with a crisis of near apocalyptic proportions.

We had no idea how long it was going to last- a few weeks maybe?- so we farmed our toddler out to my wife’s parents. This enabled my wife to keep working at home without interruptions.

For a few weeks, that was fine. Everything kept functioning smoothly in our cozy bubble. But we missed our kid, and the world outside kept getting worse, and so after two weeks we made the decision to go and live with my in-laws until the pandemic was over.

Of course, this wasn’t easy to do, because my father-in-law had to rent a van and drive five hours across a wasteland of infectious disease in order to pick us up, and then drive another five hours back. Everything is bullshit when you’re disabled.

So that was a month and a half ago. Since then we’ve been sequestered in a very pleasant, very large house in the middle of nowhere. Nothing is within walking distance, and I don’t drive, which makes my wife and I dependent on her parents for everything.

Now, when you’re disabled, you are taught repeatedly that you’re a burden. You’re made ashamed of needing things, of needing help. My wife and I call it “the shame of existing.” I suspect all disabled folks have it, to a certain extent. It’s dangerous, because it’s so constant, and it’s easy to stop noticing, and it’s easy to internalize.

Not only are we depending on my in-laws for food and shelter, but we’re also depending on them for childcare. My wife continues to work full-time remotely, and my autism makes any change in my routine excruciatingly difficult. It drains me of energy and leaves me feeling unmoored. So right now I’m in survival mode, unable to do much of anything, and struggling with the shame of existence. I spend as much time with my toddler as possible, and do what I can. I feel it isn’t enough. My wife feels I’m doing enough, but that she isn’t doing enough. I feel she’s doing enough. We both feel the constant shame of existence.

My in-laws are pleasant people. They are nice. They are friendly. So it’s easy to ignore what’s happening under the surface. They’re big believers in bootstraps. They think if everyone just pulled themselves up by their bootstraps, everything would be fine. They think every problem would be solved if folks just made a little more effort.

Well, I can’t lace up bootstraps because I have dyspraxia, and my wife can’t wear boots due to chronic edema.

My in-laws’ pathological belief in the Value of Effort drives a wedge between them and my wife and I. We try to communicate with them, but they can’t understand us. And because they help us so much, I feel guilty resenting them. Aren’t they nice? Aren’t they decent? Aren’t they making an effort? If I made an effort, maybe I could be better. There it is again: the shame of existing.

When you’re disabled, everything’s bullshit. But that’s not the natural result of being disabled. It has nothing to do with disability.

It’s because we’re not accommodated. We’re not understood. Non-disabled people don’t make room for us.

If they only made an effort, our lives would be better. The non-disabled really need to pull themselves up by their bootstraps. They need to put their nose to the grindstone. They need to get their acts together.

I mean, I see non-disabled people try- bless their hearts- and their struggle is so inspirational. But if they’d try just a little harder, maybe their problems in coping with us would be solved.

Maybe the gap between them and us would be closed.

But I don’t really think that’ll happen any time soon. And I can’t dwell too much on the future. I have to concentrate on the present. Right now, I’m stuck in the middle of nowhere. I help my wife out as much as I can. She helps me. We help raise our kid the best we can, and try to remember that every parent is struggling right now.

But not every parent is dealing with this particular kind of bullshit. No one should have to.

One Reply to “A Frantic Improvisational Game Where the Points Don’t Matter”

  1. I came here for examples of published blog posts and you did not disappoint! In this algorithm controlled attention span world, I finish less than half (honestly, much less than that even) the articles I attempt to read but I read yours. Every. Last. Word.
    Then I read it again.

    The “shame of existing” …that’s palpable.

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