Dis-labeled: How I Got Right with Being Disabled

Though I don’t always use it, I take my cane with me every time we go shopping. I can still shuffle to the cart pickup and drop-off without it and the cart doubles as my walker. Canes can be clunky, aren’t easily stored, and I simply leave it in the car.

So there’s that.

But I still bring it due to stories like this one about Lexi Baskin, the University of Kentucky student undergoing chemotherapy whose SUV, parked in a handicapped spot, was covered with printed signs shaming her for using that space. “We have seen you and your friend come and go and there is nothing handicapped about either of you,” one sign taped to her SUV’s window said. Baskin, it seemed, didn’t appear to be disabled, or at least not disabled enough, to “deserve” the privilege of parking in a reserved spot for those with physical disabilities.

Because appearances do matter. Sometimes I park in disabled parking spots, sometimes I don’t. But I don’t always appear to be disabled, so I bring my cane, a visual aid meant to shout out, “No, really, I am disabled… See?”

And that’s not fair, because I’m being forced to label myself, forced in a way to marginalize myself for appearances’ sake and to salve the expectations of others. But I’ve read plenty of these sorts of stories before and they no longer surprise me much.

I’ve struggled with the concept of “disability” since I became disabled — first through the steady progression of MS-related issues that made it harder and harder for me to do my job until I no longer could. I struggled with it while leaving my job in April 2016 for full-time disability, a process which required that I declared my disability to all my co-workers by resigning from my job and having an insurance agency “approve” me as disabled.

Qualifying for a disabled parking permit for my car felt like a final public punctuation point that ended the matter. I was now disabled in the eyes of the world, no longer “able” like most of the rest of the population, so unable that I legitimately needed a special, reserved parking spot wherever I went.

That steady march of declarations was hard and made harder still while I tried to juggle the continuing medical and physical issues and the changes they kept — and keep — creating in my life. And that process has made it easy, for me and others, to lose sight of what I am capable of and what I still can do.

I’d fought with all of this until earlier this year when I stumbled across “Why I’ve Given Up On Being Healthy,” an essay by Jody Allard at BuzzFeed that seemed to capture it all perfectly. Allard suffers from mitochondrial disease. The essay is in part about Allard’s struggles with it.

Mitochondria — known as the “powerhouse” of every cell — are found in nearly every cell of our bodies. Due to the disease, the mitochondria don’t work properly, which can lead to organ failure. The disease is complex, progressive, and incurable, and causes “debilitating physical, developmental, and cognitive disabilities,” along with other issues. I felt like a kindred spirit due to MS. But Allard’s essay also details her own struggle with the concept of disability and how being labeled disabled undermined her sense of worth and value.

“When I first got my muscle biopsy results, I thought I was disabled by my broken, battered cells. It never occurred to me that I really became disabled when I let ‘total and permanent disability’ define me, or maybe even long before that, when I decided the only way I could be valuable was to be just like everyone else … I don’t need a cure; I need supports,” Allard wrote. “And in order to advocate for my needs, I need the courage to believe that who I am — challenges, imperfections, and all — is worthwhile enough to exist.” 

MS promises to be a long disease for me, one that’s been filled with a number of turning points already. Allard’s essay felt like another one.

Having a disability, being labeled as “disabled,” even when it’s to your own benefit, comes with a cost, another challenge unseen by others but far too real. The people who created and left the signs on Lexi Baskin’s car felt she didn’t “deserve” a disabled parking spot and they were right — none of us deserve the issues or personal trials that lead to receiving the placard and the ability to park legitimately in that spot.

What we all deserve — and what each of us is ultimately responsible for ensuring for ourselves — is a chance to live valuable, meaningful lives within the “new normal” our conditions create and demand, and to be able to state this. Like Allard, “I am disabled, and I am good at what I do.”

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