Blurring the lines between ability and disability

The story of my last two months

I came across this brief article in Anabaptist World recently, and it stuck with me. It’s called “For someone your age…” and the subtitle is “I’m disabled but in denial. Why is that?”

The article caught my eye because I’ve been reflecting on a similar thing, although from a different set of life experiences. I’m in my thirties, not sixties. I can walk without a cane, hear without aids, see without bright light.

The issue I do have is an awful intermittent pain in my inner thigh. It feels unfathomably painful when it’s happening—and totally fine when it’s not happening. (Has your car ever made a disturbing noise, so you bring it in to the mechanic, who can’t recreate the problem and therefore doesn’t know how to fix it? That’s what my body is like right now.)

Human bodies, so complicated. So many things that can go wrong. / Photo by Alan Calvert on Unsplash

It seems that some sort of nerve is getting pinched, but I’m not sure where or how or why. I’ve spent the last two months diligently attempting to track down the answers to these questions without much success. (Not yet, anyway. Don’t worry, I’m still very much tracking—still “working the problem,” as some of my family members might say.)

Over time, and with a lot of wrong guesses along the way as to what does and doesn’t trigger these pain attacks—it’s so hard because the attacks don’t necessarily happen at the moment of the trigger; they could happen seconds later, or minutes later, or perhaps even hours later—I feel like I’ve gained some clarity. 

(As with other previous theories, I could be wrong again. But this one has been holding up for over a week now, which is awesome.) 

Any sort of leaning forward—whether sitting or standing—is the devil. Lying in bed on my left side with a pillow between my knees is generally okay. Walking is good, especially slowly. Swimming is fine. Pretty much all other exercise is out, for now, other than one particular core exercise (a dead bug hold, if you must know). Sitting cross-legged on one particular couch is good. (Don’t even think about the other couch.) Sitting in the car is good, preferably with the seat tilted back a bit, bonus points if it’s on a hill facing upwards. 

The leaning forward issue seems to be the biggest thing. So I find myself avoiding many leaning-forward type activities (gardening, house cleaning, scooping cat litter, reaching for my plate or other things while eating) and doing all sorts of Matrix-esque moves to accomplish others (cooking, doing dishes, getting dressed, grocery shopping, picking something up from a table or the floor). My squat game is strong.

Between the pain episodes themselves, and the time and energy trying to avoid triggering them, and all the things I’ve tried for pain relief and better understanding of the cause—the physical therapy, the chiropractor, the acupuncture, the Aleve, the lidocaine cream, the hip specialist, the spine specialist, the X-rays and MRIs—I have often not been able to work much. Some days, not at all. Others, only a little bit. 

I was struck by the Anabaptist World piece, then, because it was only after several weeks of this debilitating pain that I thought, Am I disabled? Even if, hopefully, temporarily? Is this a word I would put to my experience?

During this time I was literally reading a book by a disabled activist about her life as an activist—Year of the Tiger by

Alice Wong

. I would take this book to physical therapy appointments in case I arrived early and had time to read while I waited. 

(I was usually the youngest person in the room, other than the physical therapists themselves, and often the only one walking around looking healthy and athletic and like everything’s fine—the only one, it seemed, whose pain was so isolatingly invisible and so maddeningly intermittent.)

Even so, it took a few weeks of my whole life being upended by this debilitating pain before I wondered, What would happen if I had a job where I went into work and was expected to sit at a desk and produce stuff for eight hours a day, or do any sort of physical labor? I would not be able to do it. I would be at the mercy of my employer and whether or not they understood, whether their policies made room for reduced hours or leave and what that looked like. At some point, would I apply for disability insurance? 

A few years back, a friend applied for disability, and I was happy to write a letter in support of their application. I was happy to hear that they started receiving regular checks from the government that covered their basic needs because their mental illness made it impossible to keep a job. But I never thought of myself in a similar category. To do so feels unsettling.

Although I’m a few decades younger and in a different situation than the author of the “For someone your age” piece, I, too, have thought of people with disabilities as a whole other category, separate from myself.

But the lines are not so clear. These last couple months have brought that home for me.

I’m not claiming my life is anywhere near as difficult as the lives of so many people who live with disabilities, often permanently or for a very long time. I am saying that the line between ability and disability is blurry. And many forms of disability are not easily visible.

I think it’s helpful, as we seek to grow into kinship together, to reflect on these things. To reflect on how little separation there is among us all.

Human-made structures and ableist mindsets—including my own—create these separations. But at our core, able-bodied and disabled and all the nuanced spaces in-between, we are all kin.

This nerve pain has changed so many things about the way I live my life, how easily I move through this world every day. (Hopefully not forever; still, two-months-and-counting is a significant length of time.) 

What it has not changed is my value. It has not changed who I am, what I bring to a community, the importance of me being there. And the same is true for my kin who have experienced disability so much longer than just a couple months, often in more severe forms. 

We need one another. Really, we do.

I’m sure I’ll be reflecting more on this sort of thing in the coming weeks, because it’s what I’ve been thinking about a lot these days—what I’ve been forced to think about a lot. And I’d love to hear your thoughts.

In the meanwhile, here’s to blurring the lines between ability and disability, between able-bodied and disabled.

Here’s to building community that crosses these lines, because we are all kin and we all need one another.

And here’s to breaking down the walls we build to separate ourselves from one another, smashing through the false notions that those of us who are very accustomed to being very able-bodied are immune from the possibility that our bodies and lives could change in an instant.

We are not invulnerable. And we do belong to one another. 

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What’s your experience of ability or disability and the space in-between?

What are you learning from your body these days?

Also, are you smarter than all the doctors I’ve seen (no, really, you might be!!) and can help me figure out what’s going on with my body??

I’d love to hear.