accessibility

On June 27th, 2023 Lewis Capaldi officially announced his hiatus from touring, citing “the impact of Tourette Syndrome” as part of his decision, one discussed in his award-winning documentary How I’m Feeling Now. He did not take this decision lightly, empathizing with fans about how disappointing it is to look forward to a tour that’s been postponed—and the costs associated with it.

There’s no doubt that Capaldi loves touring, his fans, and the ability to play music in front of thousands each night. As a fellow Touretter, I’m thrilled that there is both representation of Tourette’s and the need for rest from such an international star. But I most resonate with the final part of his Instagram statement, which apologizes for rest while simultaneously justifying it: “I’m so incredibly sorry to everyone who had planned to come to a show before the end of the year but I need to feel well to perform at the standard you all deserve.”

While I’ve hardly achieved the same elevated status as fellow Touretters like Capaldi, Billie Eilish, Howie Mandel, Steve Wallace, and others, I’ve achieved a lot in my life. I’ve been Key Club President, a foster for kittens, a published writer, musician, and so much more. This confuses people when I do desire rest.

There are days when I can indulge in spontaneous plans. On other days, I need to reschedule advanced ones. It’s all up to my body, which cannot be tamed on a whim. During times of stress it can flare up, waxing and waning as it pleases.

But you were fine yesterday; you’ve pushed through it before, I think, an echo of others’ sentiments when I cancel or postpone plans. It also shapes others’ decisions about whether or not to include me at all. Their explanation is usually, “I didn’t think you’d want to come” or “It would be too stressful for you.”

This leads to shame, guilt, and feeling excluded, just for being in an unruly body; requests to forgo my comfort and embrace pain for the sake of others’ needs are seen as the “right” thing to do. While there are many times wherein I believe in pushing through (if possible), like an important celebration or funeral, it can be stressful on the body if the brain decides it’s a “tic-ier” day. It often results in having to take muscle relaxers, sedatives, and pain relievers to get back to a manageable spot.

Yet I still feel the need to apologize.

Many with Tourette Syndrome are encouraged to push past these difficulties, which is why you don’t often see people disclose their Tourette’s. As a child, my neurologist focused on controlling and eliminating the tics he believed were temporary…and my fault. He blamed chocolate, video games, SpongeBob, anything but a disability. So the masking began—and worked—and continued throughout my childhood and teen years. I was an honor roll student, involved in many service clubs and honor societies. I hung out with friends, pushing through the discomfort for the most part and making up an elaborate excuse when I couldn’t.

I believed my tics were a personal failure…until my late diagnosis at 22, long after my tics “should” have left. I had to confront the fact that rest was not a privilege, yet the guilt of canceling or modifying plans remained.

Like many others in the world, doomscrolling TikTok is a favorite pastime. User Vermin and the Rats (with a green pixie cut I wish I could pull off) confronts me with truths: “Is it possible you tie your sense of self-worth to your productivity and your ability to help others, and that’s why you feel so guilty when you’re not able to be productive and you have to rest? That you’ve been masking your disabilities for so long, that you genuinely don’t know how to gauge what your needs are?”

It’s Just Nerves: Notes on a Disability by Kelly Davio is an essay collection chronicling the author’s experience as a disabled person in the 21st century. She writes, “If you are going to disclose your illness, our culture tells us, you had better do it in a way as to make other people feel gratitude for their own good health, to take advantage of their robust bodies….” My addition? If you disclose your illness, you better be a superhuman of sorts. A gold-winning athlete. A wildly successful musical artist. Even then, you’ll still need to apologize for the need to rest. After all, your exceptionalism is waning, which is unacceptable.

In many programs across the United States, services for disabled students are referred to as ”Exceptional Education.” If you happen to be “gifted” AND disabled, you’re labeled as “Twice Exceptional.” Disability, as mainstream culture understands it, cannot inherently be associated with anything good at all; it must be paired with something to “make” it okay. In this case, being exceptional is the only acceptable way to exist in a disabled body. Don’t believe me? Just look at inspiration porn, or the objectification of disabled people to make able-bodied people feel better about their own lives.

When people respond to me with “That’s okay” or “You’re still such a capable woman” after explaining how my Tourette’s works, I get frustrated. Of course it’s okay. I never said anything about my capabilities. I never apologized for my existence.

It’s hard to correct them outright. I’ve even had to correct myself when I’ve thought or said something similar to people with other disabilities. It’s hardwired into so many brains that disability cannot coincide with anything neutral or good, even if you’ve lived it. The only way out of it is to rest boldly. After all, one of the primary tenets of disability justice is rest. No maybes, buts, ifs, or sorries. Just rest.

To practice, I’ve been typing out and removing apologies from my requests to postpone or skip events. I often still leave them out of fear or guilt, but I’m slowly improving my self-advocacy, simply taking the rest I’m allowed to take. I can no longer feel the need to “make up” for the way I exist “proving” exceptionality.

Gretchen Gales (she/her) writes…a lot. After realizing becoming a veterinarian meant being good at math, she pursued writing and teaching as a career instead. You can find more of her written and artsy stuff at www.writinggales.com.

The portrayal of disability in horror films is often very problematic—think of mental illnesses such as Dissociative Identity Disorder (DID) in the 2016 movie “Split.” Yet, horror movies hold a special allure to me. This could be because my mother has always been opposed to horror, gore, and movie violence in any form—except for distinct comedic effect. However, I think horror movies can hold a certain allure for disabled viewers due to their relatability. Being disabled can be incredibly anxiety-inducing. I find myself constantly in a state of what-if when dealing with aspects of my disability in an inaccessible world:

“What if TSA confiscates my medication? What if the environment there drives me to sensory overload and there’s no way to leave? What if I don’t “look” disabled enough to receive the accommodations I asked for?”

Horror movies often portray disabled people as the horror, but the true horror is the inaccessible world. I remember I hated tag, the default game of every elementary schooler, because I was always caught first. Years later, when watching horror movies I remembered the fear of being the farthest behind like the characters being picked off first by the monster.

In a haunted house horror, the family is tormented by fears and horrors while inside the house; outside of it, their anxiety over what lies inside tends to devour their lives. As long as the environment around us remains inaccessible, people with disabilities are constantly stuck inside the haunted house. Assuming that our home environments are accessible to us, that consolation can be our one reprieve. However, not everyone is that lucky.

Recently, one of my what-if scenarios happened. Since the beginning of the pandemic, I’ve done everything I can to prevent getting COVID-19. I have asthma and a history of lung disease. For many disabled people with similar concerns, the COVID-19 pandemic elicits a seemingly never-ending fear: what if I get COVID? Although vaccinations and new antiviral medications tampered these fears, the reality of a positive COVID test was still a shock.

By December of 2022, I’d made it through almost two full years of negative results. Each time my reactive airway and lungs flared up at an everyday cold, I’d take a test only to be negative. At this point, I did not expect to test positive, yet that second pink line appeared thick and clear. It was undeniable. Although I coughed and wheezed and my chest tightened, ultimately I didn’t need to be hospitalized. This was a feat I owe to vaccinations and modern medicine.

The real horror movie began after COVID, when suddenly my asthma was significantly worse. My pulse oximeter showed my oxygen levels dropping regularly to low 90s, a never-ending cough developed, and I was overtaken by a level of fatigue that I’d never experienced before.

Again, the horror for me was not my symptoms but the inaccessibility I encountered in everyday situations. The steep stairs to my apartment became the equivalent of a long, dark hallway from a suspenseful horror film. I started using a cane to combat the fatigue so that I could make it through my work day. My slow pace and inability to run created an even tighter time crunch, worsened by my ADHD. Everyday household tasks, such as laundry, became impossible as I no longer had the energy or strength to haul it to the laundromat without bending into a coughing fit or asthma attack.

Eventually, I was prescribed cough medicine and a new inhaler that managed to restore my asthma to a controlled state after a few more weeks. However, my asthma did not disappear and COVID-19 lingers.

A coping method I’ve been taught for anxiety is to play out a worse-case scenario. This way you see that even the worst situation your anxiety can throw at you is not world-ending. One therapist explained it to me as “…seeing monsters in the closet makes them less scary. It’s the idea of the unknown that is the most terrifying.” I played out my COVID-19 scenario in real time and, despite the real struggles I faced dealing with the aftermath of the virus, I found ways to accommodate myself, even when facing inaccessibility.

Horror movies push monsters out of the closet. Most horror movies, especially the haunted-house subgenre, end in a tense resolution of the protagonists leaving the haunted area, often with the monster lingering in the background. In “The Shining,” the mother and son manage to get away unharmed, but Jack is left at the hotel, mad and murderous. The threat of fear lingers on, just as the threat of inaccessibility never fully dissipates.

People can develop a disability at any point in their life, even people who already label themselves disabled have fluctuating support needs. These are all themes that linger in the back of horror, often cloaked in offensive stereotypes. I often wonder what horror stories and movies written by disabled people could look like. How would we portray the everyday horrors of inaccessibility? Inspiration porn pities us and stereotypical horror films label us monsters.

However, we are just as human as any nondisabled characters, with flaws and triumphs that make us neither distinctly hero nor villain. Let’s take possession of the real monsters—the world’s accessibility barriers—and bring them out into the harsh daylight alongside the ghosts and demons on television.

Fifer Charlie Loftus (they/he), who goes by Charlie, is a queer disabled writer who lives in New York. He works in a library and enjoys reading, writing, and playing board games in his free time.

Lewis Capaldi is Taking a Break. Why Can’t I?

Monsters in the Closet: Facing Fears of Inaccessibility