lilstargirl

What comes to mind when you hear the word ‘disabled’?

An old lady: gray hair and rocking chair?

A military vet: years overseas, an amputee?

A child: wheelchair-bound, hospital gown?

Disabled: impaired or limited by a physical, mental, cognitive, or developmental condition: affected by disability

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Every morning at 7:30AM, I wake up and grab my sock slider. 

It’s hard for me to put my socks on. Ever since my double hip replacement in 2020, I’ve struggled with reaching my toes. I ask people to help tie my shoes, not for lack of knowledge, but lack of hip mobility. It’s easier to take the damn shoe off and tie it separately, then pop it back on. Or wear socks with birkenstocks, a choice that horrifies some of my friends. 

I love my sock slider. When I first purchased it, I was confronted by a flurry of questions; does using an adaptive device make me lesser? Was it a sign that I was lazy, or failing? Why was there underlying sock slider shame? 

I was momentarily reminded of my disability. 

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I hate the word ‘disabled’. 

Sometimes, it makes me think twice about using my parking placard. Whenever I take a blue spot, I anticipate some form of harassment or judgment. I expect double takes– angry finger wagging figments of my imagination, come to scold me for improper use of a blue spot. For being too young, for not being obviously ‘disabled’ enough. I prepare my elevator speech about how invisible illnesses are very real, and my placard is very valid.

I’ve never actually had to do this. I’ve come to realize that the majority of people don’t actually care, and are much more focused on their own parking dilemmas to critique my viability. Also, people are much kinder and more understanding than they’re given credit for. I’ve never had to deliver my internal monologue on the struggles of my community–so why does it occupy so much mental energy?

We spend a lot of time arguing with people in our heads, waiting for a battle that never comes.

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If we’re going based on a list of physical qualities, I’d definitely meet the terms and conditions of ‘disabled’ . I beep when walking through the airport metal detectors. The thing is, I don’t feel disabled. And if it’s all just semantics, I can’t think of a word I’d identify with less.

I realize this makes me a hypocrite. I use the parking placard, I had an IEP* in school. I qualify for programs and services. I have certain cheat codes, VIP perks, benefits that I don’t feel were totally earned. I oscillate between pride and gratitude for the leg up, to feeling like I’m gaming the system. That I’m taking advantage; that others are more worthy of such things; that my condition isn’t severe enough to grant me the keys to the kingdom.

Last August, I went to my first music festival. My boyfriend bought tickets to Outside Lands, held annually in San Francisco’s Golden Gate Park. I had always avoided it, subconsciously because I was afraid (ironically, of being ‘too disabled’ to enjoy it). I was worried about being on my feet for too long, burning myself out and zapping my spoons. It seemed like an intense experience, overwhelming to someone with a very active chronic illness. 

He told me of an ADA [Americans with Disabilities Act] festival pass I’d qualify for. To make a long story short, we had the absolute greatest experience of our lives. There were chairs and water bottles and private porta potties. We were able to request golf cart rides from one side of the park to the other. It was a well organized, well run operation that changed my outlook on festivals entirely, as well as my ability to push myself and do more research about the ADA resources available. 

That weekend, when we sat up there– kings of the hill – I looked around at my fellow ADA festival goers. We listened to Lil Yachty as a privileged collective of ‘differently abled’. Again, I had the same conflicted feelings as when I used the blue spot.

When I stop to reflect, I see the irrationality clearly. I see logical errors, but brush past them like bugs on a windshield. I’m being crazy, I know. I’ve got two metal hips and a litany of grievances. I’ve had Arthritis for 26 years, and am on some seriously heavy-hitting medication.

I guess it’s human nature to question the validity of our suffering in comparison to those around us. I wonder how differently-abled I am to the person I sit next to on the bus, and who deserves a better parking spot. 

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Ten years ago, the Arthritis Foundation launched an awareness campaign called ‘Faces of Arthritis’. We got blue shirts with white letters on the front: “I am the Face of Arthritis”. I took several photos in it, using it as an advocacy tool. Then, one day, I decided advocacy was cringe and donated my blue shirt to Goodwill.

I wonder what changed in the past few years, where I no longer wear it as a badge of honor, but apologetically. I suppose I’ve been hardened, morphed into a cynical adult. I’ve disconnected from the concept of ‘disabled’ altogether–it’s been repeated too many times and has lost all meaning.

I know I’m not the right spokesperson for the job. I’m not squeaky clean–my advocacy is messy, contradictory. I don’t want to be classified as ‘disabled’, but I want you to take me seriously.

Disclaimer: Obviously, I fully support people with disabilities + their rights to proper resources, including (but not limited to) accessibility ramps and assistive devices, extended time, medical exemptions, priority seating and priority parking. I guess I’m just admitting my stubborn refusal of acceptance for my own pre-existing condition, hoping that I’ll blend in with the rest of you. 

So, I’ll ask again. What do you think of when you hear the word ‘disabled’? 

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Xx

Lil

*The Individualized Educational Plan (IEP) is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.