How we define disability (and how maybe that needs to change)

Trigger warning: depression, suicide.

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I try not to think much about 2009. 

It was a year of loss piled upon loss. A breakup that left me shell-shocked. Work burnout that had me bawling in half-empty parking lots. Harassment that sent me spiraling into panic even as I tried to pretend it was no big deal. One close friend moved away for school and a second shipped out to a war zone, and neither was their fault, but everything happened at once and left me starkly, shockingly alone. 

The symptoms crept up on me without me knowing what they were. My alarm went off in the morning and I lay in bed too long, paralyzed by panic, my heart beating so hard I thought I might die. On weekends, I slept. And slept. And slept. Ten hours, twelve hours, more. 

I started secretly wishing I was dead. The thought was so comforting. It would be like sleeping forever. All the panic, the pain, the bone-deep certainty that I was unlovable tangled up in my skin would be gone. 

I went to the doctor because I thought I had a heart condition. I couldn’t stop my heart from racing. There was no rhyme or reason I could figure out. I felt like throwing up whenever it happened. I felt frozen. Pressed down by an invisible weight. Something was wrong in my body. I didn’t know what.

When I told the doctor about my symptoms, she looked me in the eyes. “Have you been thinking about killing yourself?”

“No,” I gasped out.

“Okay, but do you feel like things would be better if a bus hit you?”

I started bawling. She was the first person who’d seen through my everything-is-okay facade. My first diagnosis of depression was upon me – and my first anti-depressants. The racing heart, the heaviness in my chest were panic attacks. I was what I’d now call passively suicidal. I had no plan, but I had no reasons to stay alive.

I started going to therapy soon after. I adopted my dog. I eventually quit my job and started freelancing, even more eventually left to travel. I gave myself reasons, even tiny ones, to climb out of bed and go for walks, to work, to live. It took years to climb out of the hole I was in. Years to walk through the darkest period of depression I’ve ever experienced.

*

Nobody knew.

If there’s anything you take away from this story, it should be that.

Nobody. Knew.

The people who knew something was up figured it was a bad breakup, a temporary sadness. But really that year had unearthed something bigger. Something that had been with me for a long time. (Because it wasn’t the first time I’d thought about dying. It was just the most serious. I’d walked around New York wondering what it’d be like to die. I’d climbed into the shower fully clothed just to feel something other than the pain back when I lived in Pennsylvania. I had anxious compulsions as a pre-teen, now that I look back and know what they are. Mental illness didn’t snap into being in my twenties; it came into focus.)

When I told a close friend about that time a few years later, she dissolved into tears. I had no idea, she said. I had no idea.

I’ve heard those words a lot since then. The more I talk about my diagnoses – OCD, CPTSD with mixed anxiety and depression – the more I hear them. I had no idea. 

And I know you had no idea. I’m good at hiding. Or people are good at not-seeing. Perhaps both. 

*

When diagnosing a disability, professionals are supposed to look at the impact it has on someone’s life. Can you work? Can you hold down a job? Can you manage school? Can you maintain relationships? This is how society defines disability. In terms of work and bills and maintaining the trappings of traditional life.

The longer I live with my unconventional mind, the more I’m convinced that that definition needs a serious overhaul. Because when I look at 2009 and 2010 and 2011, from an outside perspective, I looked fine. I hit my deadlines. I kept that job. I even demanded a raise and got it. I paid my bills on time, went to my appointments. I forced myself to go out. I went on dates. I blogged. I smiled like I was okay. 

And it was all unsustainable. I was barely hanging on. 

When I was first diagnosed with a disability, I said oh, no, you’re wrong. I’m making my deadlines and paying my bills. It’s not affecting my work, my obligations.

But she wasn’t wrong. Because what else would you call it when you meet your obligations but it takes ten times as much effort as an average person? When you tick all the check-boxes because you’ve been trained to never fail, but the whole time you’re hoping tomorrow you just won’t wake up?

It was me that didn’t understand. It was the definition – which sounds like it measures us against a checklist of outward successes – that threw me off.

It’s a definition I wish we’d refine. 

Because killing yourself for a checklist isn’t health. It isn’t being nondisabled. It’s simply killing yourself for a checklist.

*

Ironically, in 2020, I meet the definition much more easily. I’ve learned my boundaries and set them. I work part-time and frequently cut back hours to maintain my health. I work remotely and keep flexible hours. I spend whole days ticking nothing off my checklist when I need to. I take advantage of early boarding on planes so that being touched by strangers doesn’t make me hyper-vigilant for the rest of the day. 

I have, in other words, started giving myself space. Taking up space. Letting go of the checklist that declares (falsely) “she’s okay.”

Because the checklist was a lie anyway.

The irony here is that while I meet the definition of disability better, I’m also doing better. When I was trying to tick every box on the outwardly-okay checklist, I was sick and getting sicker. 

*

July is disability pride month, a time when we can all accept and honor the diversity of our bodies and minds. A time to get comfortable with the people around us. A time to get comfortable with ourselves.

And I’d like for it to be a time to challenge the way we think about disability. 

Challenge how we define it. Challenge how closely we tie it to capitalist success. Challenge the idea that it’s simply a collection of outward symptoms or hurdles. Challenge the idea that if we can tick all the boxes, that means we aren’t disabled. 

Because I am. 

The checklist didn’t diagnose me, and it didn’t “cure” me. In fact, trying so hard to keep those boxes ticked was part of what almost killed me.

The things that saved me were therapy and a tiny dog. A community of people like me. Books and stories, nature and travel. Learning to be selfish and take up my space. And recognizing that I do need accommodations. That without my part-time hours and flexible workdays and the ways I’ve now built an unconventional life, I am not okay. That the definition of disability shouldn’t be about what I can’t do, but, rather, about what I can’t do without harming myself. 

*

When I think about 2009, I think that I wish US culture saw disability differently.

Just like with my specific diagnoses (depression and anxiety back then, CPTSD and OCD now), I wondered if I fit. It was a weird sort of reverse imposter syndrome. I’m not that bad, I thought.  Does this really apply to me?

Sure, I wanted to die, but did depression really apply to me? Everything my therapist said rang true, but I wasn’t like a really depressed person, I thought. I imagined it was worse somehow, different. Largely because mental illness is still hush-hush. People still wildly misunderstand what it actually is. And when we do see disability in books or movies or TV, it’s often built on stereotypes and tropes that don’t ring true for the people it’s supposed to represent. (But that’s a topic for another day.)

But I wonder, if the culture was honest about mental health and less judgmental of disability, would it have been easier? Would I have found my support groups sooner? Would I have gone to therapy much earlier and started unraveling the tightly wound threads of years upon years of untreated symptoms?

Maybe.

Which is why I hope these words make you think about disability just a little bit differently than you may have before. Because the way we frame things now isn’t working. Or, at least, it doesn’t for me.