The first time I said the ‘D’ word, I was in the Chick-Fil-A drive-thru. I had my forearm crutches leaning on my passenger’s seat, where I usually keep them, for the occasion when I’m out and about and my legs decide to give up.
As I pulled up to Lane #2, I noticed a Chick-Fil-A worker who I’d seen before and who was always a little chatty. (Please ignore the implications of me knowing a Chick-Fil-A worker by sight, and her knowing me by sight….that’s not important to this story. I don’t have a problem, I promise).
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She smiled and took my order with the usual ‘my pleasure’, but then her eyes flickered to my crutches sitting in the passenger’s seat. I could see her at war with herself, unsure how to voice the next question, but then she said:
“I can’t help but notice you have crutches there…is everything ok?”
For a moment I was a bit too gobsmacked to know how to answer. How could I explain?
No. I’m not. I have an incurable disease, lol, isn’t that funny?
Yes. I’m fine, just sick…but don’t worry, not the kind of sick that can get you sick.
Oh. Those aren’t mine, I’m just borrowing them from a friend…I promise.
But the words that rose first to my lips were. “Oh. Yeah. Fine….I’m just disabled.”
She gave an embarrassed smile. “Ah. Yeah…”
And then the car in front of me moved and I moved up with it, leaving her behind.
As I sat there in the drive-thru, my heart hammered in my throat. I felt, in a strange and guilty way, like I had just lied to that girl. That I’d exaggerated my condition and made it a bigger deal than it is. In some irrational and exaggerated way, I almost resented her for pointing out my crutches and having to acknowledge them and my situation to her. At that time I was spending every waking moment desperately trying to distract myself from the fact that I was sick…I didn’t need her, a stranger, to point it out.
I had, by this point, over a year into my illness, begun to call myself ‘chronically ill’. According to the common consensus on the online medical journals and articles I read, someone who is chronically ill has a health issue that affects their daily life for a period of six months or more. And for whatever reason, I clung to that arbitrary timeline until after the six months window was up…only then did I take the ‘chronically ill’ title. After all, I reasoned, there were people who’d been sicker a lot longer than me. Could I, prior to six months of illness, claim to be in the same camp as them when my health issues could theoretically resolve next week? Could I pretend to understand when I was still so new at this?
But now, as I sat in the Chick-Fil-A drive thru, waiting for my nuggets, I wondered: did I have the right to call myself disabled? Was disabled the best descriptor for me? Was it somehow stolen valor to claim that title?
I almost expected that the Disability version of the Vegan Police from Scott Pilgrim would show up to arrest me, give me a slap on the wrist, or a citation for not being ‘disabled enough’. (And if you don’t get that reference to Scott Pilgrim, fix that).
But was I disabled enough? What did that really mean?
After all, there are people out there who are born with cerebral palsy, or spinal muscle atrophy who will never walk. There are people who need full time caregivers and are visibly, obviously disabled all the time. Could I claim to be in the same camp, the same community as them when I look ‘normal’ most of the time, and only use my crutches depending on the circumstances and the relative cooperation of my nervous system?
I felt like to call myself ‘disabled’ would be to be LARP-ing in a sense—putting on the term when it suited me, and living as ‘normal’ when it didn’t. If I could get away with being seen by others as healthy most of the time, what business did I have claiming to be disabled at all?
But then I actually looked up what the term ‘disabled’ meant. According to the CDC and the dictionary, disability is:
Any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).
Oh. Oh.
By that definition—the actual definition, I was disabled. By this point I had long ago kissed the idea of working full-time goodbye. I was struggling to work 18 hours a week out of the house. I couldn’t carry more than 10lbs or so without severe pain. I couldn’t stand for longer than 15 mins, walk more than 2 miles. Stairs were continually hard for me. I had to sit down in the shower. Some days I walked with crutches to save energy, to keep my weak joints working, and the pain at bay. Even driving or being outside on days when my eyes were light sensitive wasn’t going to happen. Just walking too fast around the house or grocery store made me gasp for breath, and certain chores, like vacuuming, I’d permanently sworn off without help.
When I actually examined the list of all the things my disease made more difficult…it was a lot. My disease had made living a ‘normal’ daily life pretty…disabling.
But its a strange transition, going from living your life as a healthy, ‘normal’ young adult, to suddenly being disabled. Like many healthy people, prior to becoming sick, I had this idea that ‘becoming disabled’ only happened to people who were in horrific accidents and somehow ended up paralyzed or with missing limbs. I never considered that a chronic illness could disable you and that it could happen with little to no warning.
But here I was. Here I am.
In the past year and a half since getting sick, I’ve had to examine my feelings, misconceptions, and attitudes toward disability. I started following more disabled content creators on Instagram and reading articles and think-pieces about disability theory and disability justice.
There I began learning things that starkly contradicted my previous view of disability. Namely that:
-most disabilities are acquired (beginning after birth)
-most wheelchair users are ambulatory (meaning, non-paralyzed and able to walk short distances or stand)
-most disabled people change which mobility aides they need based on the day or activity (like I do), and some days may choose to use none at all
-most disabled people’s symptoms wax and wane based on the day, the time of year, and other external factors
All of this sounded closer to my lived experience than the notions I had had in my head. Previously I’d only viewed the disabled as those who were in the SPED classes at my high school, or those full-time wheelchair users or blind folks I occasionally saw out in the wild. But disability was a wider umbrella than I’d ever realized…and it was wide enough to include me.
It wasn’t the definition of disability that was wrong…it was I that was wrong.
The more time I spent online, the more I realized I wasn’t the only one grappling with this. Every disability forum or comment section I’ve ended up on are full of people asking the questions I was asking: ‘am I disabled enough to use a mobility aide? Am I disabled enough to apply for a parking placard? Am I disabled enough to….’
Like most things in life, disability is a spectrum. There will always be someone who is ‘more disabled’ than you. But that doesn’t mean that you aren’t disabled, if your life doesn’t look like the images we see on TV. The disability experience is as unique as each disabled person. There’s no one-size fits all. The metric is in how does your condition impair you from participating in life as a healthy, abled person does, not ‘do you fit the stereotype of disability you grew up with in your head’?
But still even as I began to accept, appreciate, and believe these things, still an internalized ableism I didn’t realize I had came roaring up from some hidden depths and I found myself wanting to put some distance between me and the term ‘disabled’.
Even as I began to seriously talk to my parents and therapist and doctor about applying for disability income, I felt the need to explain myself: “don’t worry, I don’t want it to be forever. I’ll still try to work as much as I can. I just can’t make ends meet and also work as few hours as I need to in order to stay healthy. I just need supplementary income I'm—” not like those other disabled people.
Because as much as I began to see how the disabled label applied to me, I still rebelled against that being my reality. I still didn’t want to be like the ‘lazy disabled people’ who ‘just didn’t want to work’. I didn’t want to be like those other disabled people who just wanted the government to provide for them.
As if being able to work 40 hours a week is some kind of virtue. As if being able to meet an employers’ arbitrary standards for employees is a moral achievement that solidifies your hallowed place as a ‘productive’ member in society. As if being healthy enough to ‘do what is expected of you’ as an adult in this world proves that you’ve ‘made it’ and are ‘worthy’.
But honestly…that’s exactly how I felt. I took the ableist narratives around me and was trying desperately to prove that though the term ‘disabled’ applied to me…the stereotypes didn’t. I’m not like those other disabled people. But who are those other disabled people? The lazy, entitled, burdensome ones? Do they even exist?
The more I meet other disabled people online or elsewhere…the more I’m beginning to think they don’t. Because that’s the thing about stereotypes….
But along with the internalized ableism came the other ‘D’ word…denial.
Another reason I hesitated to call myself ‘disabled’ is because it felt so…permanent. ‘Oh yeah, I was disabled once, but then I got better…’ said no one ever. If I claimed to be disabled, was I giving up hope of ever being able and healthy again? If I claimed this title was I permanently setting myself apart from the world as everyone else lived in it? I didn’t want to accept that this was my new reality, my new life. I didn’t want it to be permanent. I didn’t want it to be real.
But then I began to hear stories too, of people with diseases that waxed and waned, of those who were cured either by God’s miraculous intervention or a breakthrough in medicine. I’d heard stories of Lyme patients who went from being wheelchair users, to completely healed after their treatment was over. I heard stories of cancer patients or those with post-viral illnesses go from being bed-bound to being healthy again. Did that mean they weren’t ever disabled just because they’re healthy now? No. Did that mean that their illness was any less disabling just because it wasn’t lifelong? No.
So maybe, I could claim the term disabled, even if there is an illusive 5% chance that I’ll ‘get better’ someday.
If the shoe fits…wear it. And this is one shoe that fits no matter how much I tried to deny that it does. Before, when I told the Chick-Fil-A worker that I was disabled, I felt like one of Cinderella’s stepsisters in the original Grimm’s tale—cutting off her toes so as to fit into the glass slipper. But what if the glass slipper had fit me all along, and I was just too afraid to put my foot into it and see what new life awaited me?
There’s no inherent shame in being disabled. (Something I’m still trying to believe.) But I, like most healthy people, had never spent time around the disabled prior to joining their ranks. But I think its about time that changed. (If you’re reading this and you’re disabled…lets be friends).
But even if I don’t know many disabled people irl, I’m seeking out their voices and wisdom online. And all of my interactions I’ve had have been universally positive. There haven’t been any ‘Disability Police’ that have asked for my membership card or my diagnosis, or proof of my daily struggles. Instead I’ve received only compassion, advice, answers to questions and a sympathetic, yet warm ‘welcome’. The scariest things are the unknown things, but while I’m still very much learning how to live my life as a disabled person…its becoming more and more familiar and less and less unknown.
And claiming the title of ‘disabled’, while it doesn’t change much in my actual day-to-day (besides giving me the push to finally apply for handicapped parking), has helped me live more firmly in reality. Because the reality is, I am disabled. And no amount of wishing, dreaming, fearing, or denial will make it otherwise. And its about time I start living in reality, and not simply a version of it that I can better stomach. Not only has the title helped me be more gentle on myself, explain better to others the reality of my situation, and get the accommodations that I need…but its also helped me find others like me. Cool, normal, and awesome people who navigate the world a little differently, in ways their healthy and abled peers don’t. Who navigate the world…a little more like me.
All of this is new, and I’m still adjusting to it…but that doesn’t mean its bad. Just because something’s different rarely means it is.
I was at Ross last month shopping with a friend. We were jumping from store to store looking for outfits to wear to a friend’s wedding. I had a single forearm crutch with me because we’d be standing and walking for hours. When I went to check-out, the cashier looked me up and down and squinted at my crutch.
“Did something happen to your arm?” she asked, gesturing to the forearm cuff sitting just below my elbow.
“Oh. No.” I said, fishing in my purse for my wallet. “I’m just disabled.”
I handed her my debit card and we carried on our way.
As I walked out the store with my friend, I realized that was the first time I’d said the ‘D’ word and didn’t feel like it was a dirty word. It was the first time I’d said the ‘D’ word and felt like it actually fit. It was the first time I’d used the ‘D’ word to describe myself…and somehow I still felt like Grace.
I’m Grace. I’m twenty-eight years old. And I’m disabled. And that’s not a bad thing. Nor a moral failing. It’s just a new thing. A thing that, given time, I may even learn to love.
A Few of Grace’s Favorite Disabled Content Creators (In No Particular Order):
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