let’s talk high-risk vaccine reactions // 4.2021
This article was originally published on the DAMN Solidarity Project Medium page.
why we desperately need disabled, Deaf, autistic, mad, neuroqueer, & sick perspectives of the COVID vaccine experience
I left the ER at 2am, deflated — both metaphorically and also quite literally, as the anaphylactic swelling from my response to the COVID vaccine was gone.
content warning: medical ableism & gaslighting; discussions of ableism, audism, sanism, neurotypism, & related experiences; COVID pandemic & vaccination
me, in the ER
[image description: black and white pen sketch of non-binary person wearing a tank top, pajama pants, and a ponytail sitting in a hospital bed, wearing a mask, with wires on their lap]
If my COVID vaccination journey has taught me anything, it’s that disabled, Deaf, autistic, mad, and neurodivergent access needs are not being met at any point of the COVID vaccination process. I mean, this comes as a surprise to ~no one*~ because, you know, U.S. healthcare and *gestures broadly to everything*.
*If this is a surprise to you, keep reading!
enter: post/apocalyptic 2021
The scene — societal, medical, and general treatment of disabled, Deaf, autistic, mad, neuroqueer, and sick people have always been and continue to be eugenic, genocidal, anti-access, and inextricably intertwined with all other systems of oppression, including racism.
Imani Barbarin and Leah Lakshmi Piepzna-Samarasinha have shared such realities in the following beautiful pieces of writing — “I was unprepared for 2020,” “To Survive the Trumpocalypse, We Need Wild Disability Justice Dreams,” and “Cripping the Apocalypse.”
okay but what are access needs
First off, everyone has access needs. Access needs are dynamic conditions that need to be met for a person to fully engage, feel safe, and be their authentic selves in a given situation. The difference is that access needs of able-bodied, able-minded, hearing, and neurotypical people have usually been built into architecture, services, etc.; while the access needs of disabled, Deaf, autistic, mad, and neurodivergent/neuroqueer (DAMN) people are not. The act of not including DAMN communities in decision-making (around policy, syllabi and pedagogy, city planning, healthcare service design — you name it) and then blaming these same communities for having unmet access needs (often called accommodations, because we are ~burdens~) is pretty much the standard. It is a ubiquitous function of systems of oppression that favor able-bodied (ableism), hearing (audism), able-minded/‘sane’ (sanism), and neurotypical people (neurotypism).
During the pandemic, these trends (read: embedded systems of oppression) have shown up in *peak* form. Government response to the COVID pandemic in the United States has disparately and immensely impacted DAMN communities, especially those at the intersections (i.e. queer/trans Black, Brown, and Indigenous people and femmes of color).
Now, the same patterns are happening throughout the COVID vaccination process — case & point: the vaccine rollout.
Similarly, very little information relevant to DAMN communities has been provided by medical professionals or popular news/media outlets about the vaccine — i.e. medical implications and risks for those with chronic illnesses and disabilities — or actually *getting* the vaccine —i.e. sensory access needs considerations.
Upon booking my vaccination appointment and up until my second dose, I searched desperately for the words of my kindred disabled, autistic, mad, neuroqueer, and sick people. I couldn’t find anything.
enter: navigation of ableism at life or death stakes
My first vaccine went surprisingly well for someone who faints if any needle enters their relative vicinity. When it was over, I went into the waiting area to sit for the advised, precautionary 15-minute window. As I sat there, proud of myself for remaining upright, I noticed a rash spreading across my body.
DAMN people are so used others minimizing our medical needs that we often do it to ourselves.
I chalked up the rash to the sensory overload of getting the vaccine, being out ~in the world~ after seeing only seven people in the past year, and my seat *directly* under the loudspeaker. After 15 minutes, I stood up — only to fall right back down onto the chair. Confused, I brushed off the dizziness, but stayed another 15 minutes before driving home. I compulsively checked my skin for hives or swelling. But, because it “just” stayed (read: got more and more) red and white and mottled, I thought, “It’ll be fine!”
Reader — “It’ll be fine!” is my well-known, yet ill-advised and rarely successful, motto.
life as an outlier
It’s worth it to mention at this point that I’ve been afraid of having an allergic reaction to the vaccine for over a month now due to a severe reaction to penicillin I had as an infant. This fear does not overshadow the fact that getting the vaccine is an awesome act of solidarity with DAMN communities and with everyone at the intersections — it just means that I wish we had more information.
About a month ago, a community member associated with an organization I work with directly asked a professor of medicine about potential severe reactions during an informational talk about the vaccine aimed towards increasing community vaccination rates.
The professor stumbled at the question, saying “only a small percentage of people” had such reactions. He found his footing and asserted that this experience was very rare, had been reported in only a handful of cases during vaccination trials, and hadn’t generated discussion in the rollout of the vaccine thus far. He stated that these severe reactions had only occurred in people with a history of reactions to antibiotics like penicillin. He ended by assuring everyone on the Zoom call that this was nothing to worry about.
Now, as I mentioned *just* three paragraphs above, I am one of those penicillin people. Since I could find no further information and everyone around me tried to assuage me and talk me out of “unnecessarily freaking out,” I wrote it off, under the glow of a metaphorical gaslight.
The thing is, when disabled people say they’re worried about something, it’s usually true. This is because we have a ton of experience with things that able-bodied people write off as the impossible, the worst-case scenario. The “outliers” — the disabled, Deaf, autistic, mad, and neurodivergent people who experience the impossible every day — make up at least 20-25% of the global population. To imply that our lives are “the worst case scenario” is not only ableist, it is genocidal. Exhibit one: the pandemic.
the penicillin premonition
One standout story woven into the narrative of my early years is what I like to call, “Baby’s First Ableist Experience: the tale of penicillin-induced anaphylaxis.”
“You looked like a burn victim — every part of your body was covered in a deep red rash — everyone in that waiting room looked at me [my mother], horrified, thinking I had done something to you. The parents quickly moved their families as far away as they could, grabbing their children’s hands and huddling against the opposite wall. They shielded their children’s eyes and turned their backs on us. The parents shushed their children when they asked, “What’s wrong with her?”
When we finally went into the back, the doctor brought in every single one of their residents during rounds. They all huddled around us as additional doctors and nurses alike piled into the treatment room. The doctor proclaimed, ‘This is what a severe reaction to penicillin looks like.’ They all stared at you, the epitome of allergic reactions, a ‘severe’ case to be studied.”
I retell this piece of my oral history every time I meet a new doctor, situationally adjusting its delivery for maximum impact. This unconscious strategy is based on years of trial and error, creative approaches to storytelling that call on both the comedic and dramatic, and an omnipresent fear that someone would overlook this ‘severity’ in my chart and administer penicillin without my knowledge.
Self-advocacy for DAMN people is, very literally, life or death.
You know how I said we should trust disabled people because they are usually right? Well, my omnipresent fear turned out to be a premonition.
After extensive googling and ad hoc Twitter mining, I found no mention of vaccine-induced rashes. Mentioning the rash I had gotten to the person administering my second vaccine raised no red flags. I rationalized my fear, assuring myself that if it were unsafe, *someone* would have said *something.* I ignored the foreboding feeling of collective DAMN wisdom to the contrary that spread through my body as I got the second dose.
A few hours later, I started having difficulty breathing. I somehow convinced myself that I “always breathe like this at night,” (this was not true) and “it’s fine” (it was not fine). The next day, my breathing got progressively worse, to the point that I could not speak without wheezing. Again, I told myself it was not from the vaccine, but “just anxiety.” I ended up heading to urgent care because, whatever it was, it was causing my throat to close and my rash to return.
It wasn’t until 48 hours later, after a visit to urgent care and a trip to the ER, that I was told the CDC updated their guidelines to state that you should not get the second dose if you have an allergic reaction to the first.
This is life as an outlier. This is why we need to listen to DAMN people. This is why we tell our own DAMN stories.
slacktivism for crip/mad/neuroqueer survival & community-building
Slacktivism is defined as contributing to a cause via social media, which apparently signals a lack of commitment. This ableist attitude completely ignores the power of DAMN activism (i.e. naptivism, online community-building, etc.).
In the “eleventh hour” of my ER visit, I saw that Sky at Rebirth Garments had shared their story about their own allergic reaction to the Moderna vaccine. Sky paired with Hannah, @captaincaddell, to make @HighRiskCovidVaccineReactions, an instagram account to help spread stories and information for chronically ill, disabled, immunocompromised and allergic people getting their Covid Vaccine.
A huge, slacktivist shoutout to both @rebirthgarments and @captaincaddell for the feelings of elation, validation, & crip/mad/autistic joy in an hour of such intense need for DAMN solidarity!
I completely identify with this excerpt from Sky’s facebook post, “this allergic response has taken over my life and it is also making it hard for me me to think about anything other than my health and trying to inform others ASAP who are prone to having a similar reaction…If you are tired of hearing that I’m sick, just imagine how tired I am for being so sick!!”
#CripTheVax and #VacInAut: telling DAMN stories
The idea for #CripTheVax is based on the amazing hashtag, #CripTheVote, created in 2016 by Gregg Beratan, Andrew Pulrang, and Alice Wong.
How the #CriptheVote Movement Is Advocating for Disability Policy
Just as #CripTheVote brought disability to the forefront of public consciousness, I hope that #CripTheVax can do the same for disabled, Deaf, autistic, mad, neurodivergent/neuroqueer, and sick communities to ensure the prioritization of DAMN access needs in the safe pursuit of COVID vaccination.
Alice Wong of Disability Visibility reposted this post on instagram from @HighRiskCovidVaccineReactions to help start the conversation.
I imagined #VaxInAut as a hashtag explicitly about Autistic experiences with the COVID vaccine. Discussions/tweets that center sensory and communication access needs related to vaccination, as well as the current context of anti-Autistic neurotypism created by anti-vaxxers, are imperative.
Through telling our DAMN stories, “We Keep Us Safe.”
To my kindred disabled, Deaf, autistic, mad, neurodivergent/neuroqueer, and sick people — I sit here, on my bed, in solidarity with you, ready to hear and share your stories with #CripTheVax and #VaxInAut.
To abled, hearing, and neurotypical people, listen to DAMN stories. Advocate for DAMN communities. Amplify DAMN stories with #CripTheVax and #VaxInAut.
me and my dog, Benson, the day after returning home from the ER