"Do You Identify as Disabled?"

That's a Good Question: A New Occasional Series

Photo of Jessica Slice with her son, Khalil.

This is the first in an occasional series called “That’s a Good Question.”

Do You Identify as Disabled?

I was first introduced to Jessica Slice when I was scrolling through my New York Times phone app and saw the photo above of her sitting in her wheelchair and holding her son. Here is a summary of my thoughts:

• Excitement: That is a super cool wheelchair—exactly what I’d been looking for!

• Envy: She has the super cool wheelchair and I don’t.

• Interest: Ooh, an article talking about what her super cool wheelchair means for her life!

• Admiration: What a beautiful, thoughtful writer. I’m going to send her a note of appreciation for this article.

Jessica replied to my note, and she has been just as beautiful and thoughtful as the writing in her article would suggest. It turns out that we have even more in common than having/envying a reclining wheelchair. We’ve both lived in St Andrews, Scotland, and Durham, North Carolina. We’ve both thought about issues of race and raising sons. We’ve both navigated medical systems in different countries. It has been a delight to get to know her.

In a recent email conversation about our plans for upcoming travel, Jessica commiserated with the challenges of flying with a disability, and then asked: “Do you identify as disabled?”

The question lingered in my mind, and I realized I didn’t have a good answer. I’m not sure why the answer wasn’t easy and obvious—after all, I had just been coveting the reclining wheelchair! The U.K. government says that I’m disabled. (We’re still waiting to hear whether Fife Council will agree.) My house is littered with crutches and walkers and the world’s most uncomfortable wheelchair. Unless I’m just being either contrary or ignorant, why would I not identify as disabled?

Paradox: My Historical Context

I had appointments in the Shriners Hospital for Crippled Children several times each year from before the time I could form lasting memories. When I was an inpatient, I shared a ward with a girl who was paraplegic, a girl who had no arms, and a girl who was in spinal traction with pins in her head and knees attached to weights trying to pull her spine straighter over the course of months. I just had to wear super ugly shoes while I ran and jumped and looked perfectly healthy and normal. True, at times the super ugly shoes felt like a fashion disability and a wound to my pride, but you don’t get to identify as disabled just because you wear ugly shoes.

Thus the paradox: I was the most able-bodied cripple. I was both, and yet somehow neither—at the same time.

The Grammar Question

As awareness has grown in recent decades about neurodiverse people and the range of visible and invisible disabilities, there have been many conversations about the appropriate way to refer to or describe disability. In the autism spectrum disorder (ASD) community, which I am more familiar with, one debate has been whether to use the phrase “person with autism” or “autistic person.” Some call this person-first (person with autism) or identity-first (autistic person).

Those of us who have devoted way too many hours of our lives to reading grammar texts and style guides call this the verb tension: Is versus Has. Is the disability something that you have? (I have a disability.) Or is the disability something that you are? (I am a disabled person.)

Disability rights activists have different preferences, often strong ones. For a disease, the phrasing is often straightforward: I have cancer. I would not say that I am cancerous. For me, the more natural inclination is to be flexible with the phrasing for disability. I have a spinal cord injury: I have a disability, and I am disabled. But I would probably lean more toward “have a disability,” if forced to choose.

Ability and Acceptance

I think my (flexible) preference for “have a disability” has some additional underlying reasons. First, how much “ability” has to be lost in order to qualify as a “dis-ability”? Second, how long does the “ability” have to be lost in order to qualify as a “dis-ability”? For instance, in my childhood experience at Shriners, I had not lost nearly as much ability as most of the other children in the hospital, and my surgery prevented my diagnosed condition from developing into a disability. As a result, I never associated “disabled” with part of my identity.

Today, it is more complicated. My amount of “ability” and “disability” has fluctuated wildly over the past year. At one point, the list of things I could physically do independently was considerably shorter than the list of things that I needed assistance with. I remember thinking last summer, when I could not manage the steps to get outside our house, that not only was I disabled but I was also a shut-in, those mysterious figures who populated the Wednesday night prayer meeting lists from my childhood when we would pray for “the sick and shut-in.”

The balance between my ability and disability now looks more like it did when I was a child in Shriners Hospital. I can walk—but not very far. I can stand—but not for very long. I can do most things independently—but frequent problem-solving and accommodation are still required.

And this time there is no surgery that will fix my diagnosed condition. I’ve realized that saying I identify as disabled feels like a measure of acceptance that I haven’t quite achieved. I want to feel like my injury will not be a permanent impediment to my independence. I still want to feel like my disability might dissipate further; that even if I can’t control what is happening in the fight with those cancer cells, I can keep battling to be more-abled.

Practical Conclusions

First, follow Jessica’s example and ask people how they prefer to be described or identified. (Mercifully, most people won’t give you such a long response as I have here!) They might not have a preference, but if they do, it’s a good opportunity to demonstrate some awareness of the issue, some sensitivity to their preferences, and some solidarity in using the phrasing they choose.

Then advocate for better access and accommodations for disabled people and people with disabilities. Patronize local businesses who are intentional about making space and creating support. Encourage online spaces to be accessible. Donate to organizations who are providing resources that help people be more-abled. Volunteer—even a little time can make a big difference. Urge your communities to be intentional about accessibility.

And practice acceptance—be patient with that person who takes longer in the grocery check-out line; offer to help that person who is struggling with the stairs; and smile when you see a woman strolling with her child in her reclining wheelchair.

Let me know if you have a question that you’d like to see here!

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Treatment Update

I was going to describe this as a “broken record” update—and then it occurred to me how very old that makes me sound. Kids these days don’t remember a time when your record would have fuzz or dust on it or the needle wouldn’t stay in the groove. They don’t remember when your cassette tape would get caught in the player and you’d pull it out with a long jumble of tape. (If you were lucky, the tape wasn’t too wrinkled and you could use a pencil to rewind the tape.) They don’t remember when your CD would get scratched and that would be $16.98 down the drain.

Take your Spotify and get off my lawn!

Ahem. The update: It’s much the same as before. My white count was too low for treatment last week, so we’ll try again this week. I will get an infusion of a different treatment this week so I will be going to Ninewells regardless, and it would be great if I could get the targeted therapy at the same time. Please keep praying about the change in oncologists, and that I will be able to get the results of my scans soon. And I would love for the results of those scans to show that the treatment is working.

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My Favorite Basketball Coach

It’s true that Duke beat UNC this past week. (I promise, Tarheel friends, that I won’t revel in the win by 20 points in your home arena or do any of those annoying chants like GTHCGTH. I’ll barely even mention the game! I certainly won’t go light something on fire and dance around. This can be a safe space for you to mourn your sorrow and loss at the hands of the Blue Devils.)

Note: This is the only bonfire I attended and it was almost 12 years ago. I do not condone burning benches without a fire permit. (But I still think that’s less bonkers than lighting fires in the middle of Franklin Street. GTHCGTH!)

But my favorite coach is not who you might think, and you’ve probably never heard of his team. They might not get the kind of national recognition they deserve, but they are going to get a shout-out here at The Incurable. Every year, the American Cancer Society sponsors Suits and Sneakers week as part of their Coaches vs Cancer program. This past week, a pair of yellow sneakers were on the sidelines, coaching some of the nation’s finest players* in basketball skills and cancer advocacy. Thanks, Gregg! I’ll cheer for your team anytime.

I feel so honored that you would put my name on the card! You have a big fan here in Scotland!

* Right behind LeBron James, Steph Curry, Nikola Jokic, Kevin Durant, Giannis Antetokounmpo …