Tuesday, March 2, 2021

Getting the COVID-19 Vaccine While Autistic

Photo © VCUCNS | Flickr / Creative Commons
[image: A person wearing a black tank top getting a vaccine injection in their shoulder.]

by Kate

On Monday, February 15, I was lucky enough to get my first dose of the new Moderna vaccine for the COVID-19 virus.

I say lucky, but in reality, it was a matter of various privileges, such as race, class, and education, all combined with the fact that I moved into a certain type of housing last summer. I had been communicating with a staff member for my local health department about something else related to the pandemic, and when the subject of vaccines came up, this person told me that I qualified and I should make an appointment right then. So I did: CVS, a local pharmacy chain, had just been allocated a large number of vaccines, so it was fairly easy for me at that moment to get an appointment.

Of course, my experience was an anomaly. The fact is is that the vaccine roll out in the United States has been an utter disaster. It seemed to start off strong, with emergency room doctors and other healthcare professionals proudly rolling up their arms for the shot, but since then, there has been almost nothing fair, equitable, or understandable about it. Right now, if you happen to qualify in your state, it is a matter of various privileges, hard work on a computer, a lot of luck and very likely, knowing the right people who give you the right tips, like I did. 

This article will not tell you how to get an appointment for a vaccine, because it seems that every state and every county in the US is doing it very differently. The CDC (Center for Disease Control) guidelines that were issued for the distribution of the vaccines seem to leave an awful lot of things open to interpretation, and no two institutions or governmental entities are interpreting the guidelines the same way. Other countries seem to be doing it just as badly, even Canada, which like many Americans I view as a sort of socialist utopia, full of maple syrup, friendly people, and universal healthcare.

It is the opinion of this author, and many, many other people, including scientists from around the world that if you are able to get a vaccine, and if your doctor thinks that it is safe for you, then it is simply common sense to get one. We need to get as many vaccines into as many bodies as possible in order to stop this pandemic. We need to stop this pandemic so that we can reopen society and schools, and see our friends and family, but most importantly, we need to stop this pandemic so that people stop dying of COVID-19.

I flunked out of chemistry in 11th grade, and I do not even pretend to understand the majority of scientific things, but I do understand that the Covid 19 vaccine works. How it works, that I do not understand. I don’t know the difference between DNA and RNA and MRNA, but honestly? I… don’t need to. Instead of trusting my own, precarious scientific understanding, I have made the choice to trust the people I know—and know of—to understand the science behind the vaccines

I trust my personal healthcare team, I trust my family members and friends who understand vaccines, I trust people on the national and international level, like Dr. Anthony Fauci, when they say that the vaccines are safe and that they work the way they are supposed to. Again, my privilege shows, because as a white person I do not have the generational trauma that leads many people of color to rightfully distrust the medical establishment. I know that, while for me it was an easy choice, it may not be an easy choice for other people. But there is been absolutely nothing in this pandemic that has been easy. We all just need to keep on keeping on as best we can, and for me, that means getting vaccinated.

I was extremely excited to get the vaccine, because like everyone else, my world has changed dramatically since last March—and frankly, I detest it. I detest wearing masks, I hate online church, and I miss seeing friends and family in person so much that it feels like spikes are being pounded into my chest. In just the past two months, I have made the very difficult decision to stop seeing my mother in person for reasons of safety, and (totally unrelated) I also have also dealt with bedbugs in my apartment. (Bedbugs + OCD + a pandemic which means you can’t get help from people to bag and disinfect stuff = total hell.) When I found out that I could get the vaccine, it felt like a weight had been lifted. I felt like I could actually breathe.

And so, on that Monday morning, I got dressed up—because I have not had a reason to get dressed up in nearly a year, and I figured that this was a momentous occasion if there ever was one—and drove to the CVS where I was scheduled to get my shot. I brought: my phone, a book to read in case I had to wait, water, hand sanitizer, masks (of course) and a doctor’s letter specifying that if at all possible, I should receive the vaccine in an area other than my arm. This is because I have fibromyalgia which is centered on my arms, and experience with other shots has shown me that it will be triggered by a shot there.

When I got to the CVS, I attempted to check in online, only to be told that it was too early, and I had to wait until 15 minutes before my appointment. Finally the clock turned to 11:30 and I was able to check in. I then went into the store and checked in two more times at two different places. When I had registered online, I had had to upload copies of my insurance and my license, but since I use CVS for all of my medications, I had no worries about giving them this information. They already know basically everything about me, anyway.

I was surprised that I had to wait in a line to get the shot when I had a specific time slot, but apparently the computer was having problems. CVS was only four days into distributing the vaccines, so I wasn’t complaining. The line looked very long, but this was because people were spread out, 6 feet apart. I had to wait about 15 or 20 minutes. Then I got to the front of the line and confirmed my name and basic information, and gave the technician my doctor's letter.

This is where my experience differs from other people's, because the technician spent a good 10 to 15 minutes looking things up, to confirm that it was okay to do what my doctor had said to do in his letter. Finally she determined that an injection site other than my arm was fine. I went in to a room that had two stations for people to get shots at, each separated by Plexiglas. There were two technicians, who took your temperature and your oxygen level, and confirmed that you had not had symptoms of COVID recently. They then swabbed the shot area with an alcohol wipe, loaded the needle, and quickly injected me. I did not feel the needle going in, because it was very fine and only an inch long. The put a Band-over the injection site, and then I followed floor arrows to a waiting area.

Like many other vaccines, you have to wait onsite for 15 minutes after you get the shot, in case you have an allergic reaction. (I used this time to update Facebook about getting the vaccine.) The people around me were all much older than me. They reminded me of the fact that I was getting the vaccine ahead of almost everybody I knew, and I felt bad, because I wished that everyone could get the vaccine right away so that they could feel safer, too.

A pharmacy employee was monitoring the waiting area, and she made small talk, asking people why they were getting the vaccine. To me this was a stupid question, because in my mind there is only one reason to get the vaccine: to save lives. I was very surprised when one elderly man explained that COVID was no big deal, that he had had it with no symptoms in the spring, the government overhyped it, that if it was his time to go he would just die,  and he was only getting the vaccine so that he could travel safely. Although I have encountered these thoughts online and in the news media, I have never actually met someone with these views and was utterly astonished, and exclaimed loudly, “I got it so that I don’t DIE and so that others don’t DIE!” 

The waiting area, perhaps unsurprisingly, got very quiet after that. People do not like to think about the fact that COVID and death are so tightly wound together. Many non-autistic people will put COVID out of their minds and not think about it. I think about COVID constantly, just as I constantly think about those who have suffered and died from it.

I think that the autistic experience of the COVID pandemic is very different from that of other Americans, because many of us feel emotions so deeply, and we tend to think about the details of things a lot. To me, it is easy to imagine that specific mother, father, cousin, or friend who died, and to empathize so much with strangers' losses that it is physically painful. I can’t say that I’ve ever felt anything when I hear about the Dow going up or down, but I have bent over in pain when a friend is very ill, and I have wept in sympathy for the permanent physical damage that COVID does to people’s bodies.

My fifteen minutes soon went by, and I could leave. I went to the Trader Joe’s next door and I bought myself a cake to celebrate. I immediately noticed that it was a little hard to walk, because I felt like I had been punched repeatedly in my thigh, right where the shot went in. That area looked a little bruised and red, and over a week later it is still hard and reddish, and if I think about it, yes, it hurts. I was also more tired that week, not just regular tired but sleepy in the middle of the day, which was weird. 

From my online research and talking to other people, these reactions are a little bit bigger than most people’s reactions, but like most autistic people’s bodies, mine is weird, so it makes sense that my reactions are weird. I am not really looking forward to the side effects from the next dose, which I will receive on March 15, because everyone says that that one is much worse. I plan to communicate with my doctors ahead of time and to put in place a good support system for that week. Luckily, like most people, my schedule is very empty these days so I will not be missing anything.

I am very glad that I was able to get the vaccine. For months I have honestly felt a bit like a murderer whenever I leave the house, because I know that the virus can potentially go through my mask and infect others without my having any symptoms. As someone who tries to be as moral as possible in all areas of my life, invasive thoughts like this one are truly distressing. I will continue to follow all of the CDC and local guidelines. I am not going to any parties, I will not eat out in restaurants, or do truly unnecessary things, but getting a hug from my mom will be a million times better than anything any psychiatrist could ever offer. Traveling is fun, parties are enjoyable, fairs and festivals and parades are also missed. But it is the little things, like hugs, that this pandemic has taken away from me—it is the little things that hurt the most, and it is the little things that I hope to get back as a result of getting that little shot.


In the week and a half since I got my first shot, a number of my friends have also gotten theirs. My parents also have their appointments scheduled for March. I will update TPGA on the experience of getting my second shot. 

Herd immunity is a term that you may see used when talking about COVID-19. Please be aware that it has absolutely nothing to do with cows. (Cows are, however, amazing, pleasant creatures. I met a miniature cow once, and it was actually surprisingly big.)

Many articles talk about if you ‘choose’ to get the vaccine. I acknowledge that for many people, it may not be their choice. If you have a guardianship or conservatorship in place, or if you live in a residential setting such as a group home, you may not be given a choice about whether to receive the vaccine. If this is the case for you, I am so very sorry that you lack this basic right. Please know that there are other autistic self advocates out there who are willing to talk to you about this and about how difficult it may be to not have a choice when it comes to your own body, and to help you find ways to get more autonomy in the future.


Monday, March 1, 2021

Abuse Is Not Love: Apologist Responses to Filicide

Kit Mead

Content note: Abuse and murder of disabled children

The Broken Ankle
Photo Dave and Margie Hill ©  | Flickr / Creative Commons
[image: Ambulance on a snowy road, seen from the back and side.]

Every year the list of names we read during the annual March 1st Disability Day of Mourning vigils gets longer, as we find more victims from years past, and because family members and caregivers continue to murder disabled people in their lives.


Autistic children are more likely to abused; I grew up a victim of child abuse. My abuser did not target me for my behavior, he targeted me because he wanted to hurt people, and knew if anyone found out — save for my mother — they would sympathize with him, just like people sympathized with K. Stapleton after she tried to murder her autistic daughter Issy in 2013.

I wrote a petition to garner public support for a K.'s fair sentencing. In 2015, my then-Autistic Self Advocacy Network (ASAN) chapter in Atlanta put out an action alert to remove the phrase ‘mercy killing’ from a the news coverage of disabled filicide victim Dustin Hicks, a local youth.

Many disabled people have been fighting for this justice for far longer than I have. The Disability Day of Mourning memorial site, by ASAN, so far goes back to 1980. Officially, the Disability Day of Mourning started in 2012, and in 2013 its initial organizer, Zoe Gross, was honored as a White House Champion of Change for her work.

Gross is now ASAN's Director of Advocacy. At the 2019 DC vigil, she commented on a recent study on abuse of autistic children:
“The researcher was asked what makes autistic children vulnerable to abuse, and his first thought was: it’s the way they act. The way they act makes people hurt them… Ableism allows abuse to escalate. Sometimes, that kills us. Many of the people we mourn today were killed after months or years of abuse.”
I don’t know that my own story would have been different than countless others written up in the news. If my abuser would have ‘snapped’ under the weight of ‘caring’ for me. Few people, if any, suspected abuse, and even then, the story would be that I deserved it, and that the abuse was love.

What if I was not here?

The fact that I’m in poverty and struggling to get on benefits should have nothing to do with my change.org petition regarding K. Stapleton. To some people, for reasons of sheer cognitive dissonance, it has everything to do with it. These people are filicide apologists, apparently. Their thought process goes like this:

They claim lack of services is a good reason to kill a disabled family member. They cite desperation, resource scarcity, financial scarcity, and the toll of caring for a disabled person. The media runs stories like these ad nauseum. People flock to comment in defense of the murderer.

But services — even lack thereof — do not cause filicide. ASAN notes in their Anti-Filicide Toolkit FAQ section:
“There are thousands of families across the country with insufficient or nonexistent services who refrain from murdering their disabled family members. In addition, most high-profile cases have occurred in upper-middle-class communities and have been committed by parents who either refused services, or had more family services than is typical.”
It is also worth noting some further dissonance: My poverty is justice to these people. For speaking out against filicide, I got a comment on a wholly unrelated post, telling me that my struggles to get nowhere in poverty and get benefits are what I deserve. I did not want K. Stapleton and those who murder, or try to murder, their disabled family members to receive some sort of cruel and unusual punishment like the ones they wreaked on their victims. I wanted them to receive the a proportionate amount of punishment to those who murder nondisabled children.

I am in poverty. I have never tried to kill anyone. Issy Stapleton’s father has been raising the same person since the attempted murder in 2013. He has not tried to murder her.

What should be relevant here is not my poverty. What should be relevant here is that I am disabled and know what it is like to live as a disabled person. Disabled people deserve to live free of abuse. We deserve, if not that, to have justice for the harms wrought upon us.

I grew up disabled. I grew up a victim of child abuse.

What if I was not here?

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