ableism

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Who am I trying to be?

I have always been a socially anxious, awkward, and emotional person. I was diagnosed with autism and at 16 and I’m 26 now. I’ve spent the last 10 years aggressively pushing myself out of my comfort zone in an attempt to escape my own innate social and emotional challenges. I’ve been sprinting as fast as I can away from the emotionally unregulated little girl I was towards what I envisioned as my “true self”. I’ve been convinced my whole life that my future idealized, neurotypical-acting self with no social deficits is my “true self” and that with enough self-discipline and practice I can become her. Identifying with the undiagnosed, untreated version of myself is scary, because it was alienating and painful to be that little girl. But autism doesn’t go away, even if you try really hard to forget you’re autistic.

In the book Brilliant Imperfection, Eli Clare critiques the notion that disability is something people can or must overcome through hard work in order to thrive, and explains that this belief is rooted in the ideology of cure, which doesn’t neatly apply to most disabled people since so many disabilities are congenital and uncurable.

“But for some of us, even if we accept disability as damage to individual
body-minds, these tenets quickly become tangled, because an original
nondisabled state of being doesn’t exist. How would I, or the medical-
industrial complex, go about restoring my body-mind? The vision of me
without tremoring hands and slurred speech, with more balance and
coordination, doesn’t originate from my visceral history. Rather it arises
from an imagination of what I should be like, from some definition of
normal and natural.“

The person I try every day to become never existed, does not exist now, and may never exist. That is a difficult thing to accept in a world where autistic people are punished for not conforming, for being “weird”, “immature”, “off-putting”, “cringe”, etc. I’ve never felt like I was trying to cure myself, but reading Brilliant Imperfection made me realize how deeply my own internalized ableism is rooted in the ideology of cure. This realization has not magically cured my internalized ableism, but it certainly held a mirror up and opened my mind to another line of thinking that I will continue to explore.

No One Mourns the Sick: The Wicked Myth That the Pandemic Is ‘Over’
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No One Mourns the Sick: The Wicked Myth That the Pandemic Is ‘Over’

You don’t have to watch Wicked to know its famous line—“No one mourns the Wicked”—which basically means that some people aren’t worth grieving. This kept echoing in my head when I heard that both lead actresses of the Wicked: For Good film recently tested positive for COVID.

According to a recent Guardian article, “Both Grande and Cynthia Erivo tested positive for Covid during the filming of the first movie, temporarily delaying production. Erivo reportedly contracted the virus days before shooting the climactic first-act number Defying Gravity, while Grande tested positive before filming the song “Popular.”

The same article notes that during the current press tour Ariana Grande again tested positive, forcing her to miss several events.

That news made me think of Mia Mingus. In her blog “You Are Not Entitled to Our Deaths”, Mingus challenges the idea that disabled or sick bodies are disposable and that those lives aren’t worth protecting or grieving. After reading this blog and our discussion in class, it made me remember hearing about the Wicked news. It made me realize we’re acting like COVID is just a production hiccup, an inconvenience to filming or press tours, rather than the ongoing threat which is killing and disabling countless people. The fact that both leads got sick, during filming and promotion, yet the media and public reaction centers on delays, missed appearances, and disappointed fans speaks volumes.

There’s something horrifyingly Wicked-like about how illness is framed now. If someone masks, they’re “paranoid.” If they don’t appear for a photoshoot or premiere, fans complain. When someone gets COVID, the conversation is about wasted money on promotion, fan backlash over missed premieres, or travel delays , but  rarely about health, recovery, or the toll illness takes. The framing treats sickness as a hiccup, not as human suffering. It treats the sick body as a burden to the show, not as a person in need of care.

“Grande’s positive test was the latest hiccup for the full-court Wicked press blitz that has seen the cast hop continents by the day. Due to flight delays, Grande was unable to make the premiere in Brazil, triggering fan backlash she also addressed on her Instagram.”

That is exactly the kind of abled entitlement Mingus warns about: a culture that assumes certain bodies can and should be sacrificed for convenience. Under this logic, “the show must go on,” regardless of who gets hurt. The Wicked cast situation isn’t just celebrity news, but it’s a reflection of a larger societal pattern where health, disability, and our shared vulnerability are minimized, ignored, or erased entirely.

What’s even worse is how normalized this erasure has become. COVID has become “another thing,” something to power through so cameras and promotions stay on schedule. Workplaces expect people to show up sick. Students are told to push through fevers. Long-term effects are brushed off as “just fatigue.” Public health infrastructure? Largely forgotten. Masks, ventilation, testing are all optional. People who get sick frequently or live with chronic conditions are expected to adapt or be pushed aside.

Mingus doesn’t just name this as negligence, she instead frames it as violence. When we treat care as optional, when we prioritize productivity over people, when we mourn canceled premieres more than lost lives, we are making a statement about whose lives matter. We’re deciding who gets protection, who gets grief, and who doesn’t.

We shouldn’t act like the pandemic is over. We need to stop shrugging when someone gets sick, framing illness as inconvenience, or acting like the only thing that matters is the show going on. Production, entertainment, or convenience is not more important than actual human lives. Because if we care at all about disability justice, about valuing every life, then we can’t pretend the pandemic is done. We have to mourn the sick. We have to fight for care. And we have to stop believing the myth that pushing on by ignoring risk, ignoring illness is normal or acceptable.

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“F*ck your disorder”

Photo by Darya Sannikova on Pexels.com

A few weeks ago I had a difficult bipolar/autistic meltdown that spiraled me into a dissociative state. I say bipolar slash autistic because the criteria and symptoms for both disorders overlap so much that it is nearly impossible to tell them apart within my own body at this point.  I wasn’t able to attend some of my classes for two weeks because my mental state was feeling immensely guilty about using my accommodations. Every time I typed up another email to a professor, saying that I once again had to rely on my disability accommodations, I felt my chest tighten with anxiety and guilt, as if I was doing something wrong by needing my accommodations. I didn’t want my professors to think that I was lying to get out of class to go out with my friends. To be fair I did hang out with my friends and try and do stuff during the time I had class, but everything we did was an attempt to pull me out of the dissociative state I was in. As someone who has heard numerous times that they don’t look “autistic” or “disabled”, I am aware that this is a judgment that many pass on me, and I was aware that my professors may think that as well. Perhaps out of guilt, I sent an email to my professors, explaining that I had bipolar disorder and was struggling to pull myself out of a rough episode that left me unable to even read and comprehend the readings for any of my classes. Most of my professors answered with supportive statements, validating my disability and granting me as many extensions as I needed. One professor emailed me back, ignoring the fact that I had just opened up to him about my identity, and demanded I turn in my work within 48 hours, because the accommodation guidelines offered a 48 hour extension as an example guideline. Evidently, I was not able to get my work in, because I am not able to pull myself out of a dissociative episode on command; to make it worse, when I finally returned to class the following week he spoke negatively about bipolar disorder in class, leaving me stunned and panicked. I made the rather obvious assumption that I wasn’t his favorite student. Rather than fighting with him every step of the way, I decided to withdraw from the class, postponing my graduation from this December to May. I was devastated telling my parents that I would not be graduating as soon as they thought, and I was even embarrassed, knowing that if I pushed myself I could have made it through the class. But just because you can do something as a disabled person, doesn’t mean it is worth it. I was reminded in a somewhat blunt manner that not everyone will accommodate your disability, and sometimes it’s better to give up, then to fight for your right to take a class. 

The emotional labour it would have taken for me to fight with this professor every step of the way, just to most likely pass with a C in his class was not worth it for me. Personally, I am proud of myself for knowing my boundaries and how far I can push myself. He made me feel weak and made me hyperaware of how people view me as someone who is bipolar and on the sepctrum. 

Subtle ableism is so present in today’s world that it goes unnoticed by most, unless we are directly affected by it. For me, this was an example of direct ableism, someone who would do the bare minimum to accommodate my needs, and refused to do anything more. It was dehumanizing, but it also reminded me how lucky I am to not be faced with people like him, and ableist challenges on a daily basis. Our world was not made for disabled bodies, whether it’s expectations at work, to campuses being not accessible, to the general population applying certain stigmas to disabled people as a whole. As a physically abled person who is usually able to mask their disability in public, I don’t have to constantly worry how I will make it to class on time, or if the elevator will work today, or if I will be able to make it up the hill to my building for class, and that gives me a certain privilege. The dialectic of both being disabled and abled is an interesting limbo to live in. I can’t imagine how it would be if I had to worry about physical disability on top of my ever present mental disability, still, I can’t help but wonder if I would have been treated better by that professor if my disability had been more visible.

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Bedroom.

A view from my bed [ID: Hazy photograph of a window illuminated by vibrant red and purple lighting. In the center there is an electric candelabra sitting on the window sill, slightly obscured by sheer curtains.]

2011 was the year I began distancing. By which I mean, I began a life lived from my twin bed, fueled by goldfish crackers and electrolyte drinks, seldom able to access the outside world. It wasn’t mine to call home anymore.

I was drowning in conditions that these doctors hardly knew about. I had no choice but to become my own doctor, nurse, and historian. More than anything, I became my own community.

The outside world was stolen from me by sickness, uncertainty, and administrative violence – this world was never built for my survival. Such predicaments were met with constant calls to push through – go into the world anyways, risk it all for a “normal” life. They said adapting to it would make me better. It wrecked my body and my mind. Being bedridden was extraordinarily taxing and painful in a way that cannot be understood by those who have not been fully immersed in it in this way, yet. But I am inseparable from my bedroom life, I am made of soft pillows and the world I built among them. 

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