Content warning: Mentions death.
This interview was done by Lee (she/her) who is a member of the YDAS COVID-19 Working Group.
Disabled young people have found it hard to get the COVID-19 vaccine, so I interviewed 3 disabled young people who have been vaccinated to find out more about their experiences.
YDAS COVID-19 Working Group members, Mia and Emma, and our Facilitator, Is, have answered some of your most frequently asked questions about getting the COVID-19 vaccine.
Lee, Mia, and Emma
How did you know that you were eligible to be vaccinated?
Mia: I did the online eligibility checker several times, sometimes clicking that I was disabled and sometimes not, because each time I got different answers. I found that the written criteria was more useful for my circumstances and eventually figured out that I was eligible because of the medication I take.
Is: I am a disabled young person with a complex combination of co-morbid disabilities, but it seemed I was not eligible for the vaccine as a disabled person. I am fortunate enough to work in the disability sector, which meant that when disability workers were made eligible for the vaccine, so was I.
Emma: Finding out if I was eligible was very tricky for me. My disabilities and my chronic health conditions that cause me to have a suppressed immune system were excluded, so for a very long time I assumed I was going to be under 1B and was very upset over that. I sort of just thought that there was nothing I could do.
How long did this process to get vaccinated take?
Mia: Too long! At first, my doctor’s office told me that they would not be vaccinating anyone under the age of 80, so I didn’t even check my eligibility. I thought I was somehow being dutiful by 'waiting my turn' (even though it should have technically been my turn already).
But when the mass vaccination centres opened up, I booked my appointment through the hotline right away. Getting through on the phone took about 5 attempts across one whole day, but the staff were really nice once I got to speak to them.
I never received an email to book a second appointment so I had to call again. That’s when they told me there was a delay in getting the Pfizer vaccine, so I had to wait a few extra weeks for my next dose.
Is: When I arrived at the clinic, the process was very quick and I was able to go to the vaccination room relatively quickly.
Emma: It was a very quick day. I think it was first thing in the morning, but it was 45 minutes max, which is really great for energy levels and those sorts of things.
Did you have any symptoms after your vaccination?
Mia: My reaction was pretty mild. My arm was very sore, I was a bit achy and my POTS symptoms flared up a bit for the first couple of days.
Is: I have a condition that means my immune system is overactive in believing that everything is something I am allergic to. My body responded to the first dose of the vaccine in this way, but apart from that there were no other symptoms.
I experienced whole body joint pain and flares for the 48 hours after my second dose of the vaccine. Once that had subsided, I had no other symptoms.
Emma: After the vaccination I was very tired, but I was also just exhausted from the whole experience. I was also in the middle of a flare up with some of my chronic health conditions, so they were all sort of fighting, so I did have a very big crash that night.
Overall my symptoms were not that bad. I was very shocked because I'm very sensitive, so I was expecting to have a very bad reaction. I was fortunate that I didn't. I think it wasn't until a couple days later, but I had a big crash and I felt unwell, but probably the worst symptom for me was the aching in my arms.
Did people question your right to the vaccine?
Mia: People questioned why I hadn’t gotten it sooner. I think the general public didn’t realise that the red tape and bureaucracy that got in the way of getting vaccinated was really hard to wade through.
There needs to be a nuanced understanding of why this rollout has gone so badly, and what barriers were in place that prevented disabled people from getting vaccinated, because we need that knowledge to prevent the same from happening again.
Is: Whilst no one directly questioned my right to the vaccine, the fact that I could not get one as a disabled person, despite being in the category they were supposedly prioritising was frustrating to say the least. When I was able to get the vaccine as a worker, no one questioned my right, though my internalised ableism made me question myself to make me feel like I was ‘cheating the system’.
Emma: I think those in my life understood that I did need the vaccine so I didn't get much negativity from anyone. I did get a few comments from some people shocked that I had gotten it, because I'm young and 21. I got a few looks like, "You're young, why are you getting it?" or "You shouldn't be able to get it."
I did get a couple of those comments but I think it did help that my doctor agreed that I should have it. I also knew that with my suppressed immune system, I did need it and I think it's one of those experiences as someone with an invisible disability. I do get questioned a lot, so I'm used to those sorts of things.
What are your overall thoughts on the whole experience?
Mia: Overall, I’m very glad to be vaccinated even though the process has been frustrating.
Is: Fundamentally, disabled people should have been actively prioritised in the vaccine roll out, both in words, but more importantly in practice. I wish I didn’t have to continue justifying my right to get access to a vaccine that will likely save my life.
This is pretty morbid, but if I were to get COVID-19 I would likely die, yet this fact was not enough for the government to make it easy for me to access the vaccine. Additionally, the process of booking was wildly inaccessible, and while I was able to access it, that is a privilege many disabled people aren’t afforded.
Emma: My thoughts on the whole experience is the rollout of the vaccine has been horrendous. Disabled people, especially young disabled people, have really been left out. There's been so much confusion surrounding the whole entire thing, and it has been so hard for the people that do need the vaccine to access it.
I think there needs to be better communication and resources around who is eligible to get the vaccine. For my illnesses, I was telling other young people they could get vaccinated, and they were just honestly so shocked and doubtful. They didn't believe that they were actually eligible and could get the vaccine now.
The communication around who is eligible is very confusing. It makes it really hard, especially for young disabled people. We have to put all this energy into advocating for ourselves for this and other things, which adds up. I was so exhausted after this experience just because of how much self-advocacy I had to do.
Getting the vaccine itself was a smooth process, but the lead up to getting vaccinated was very stressful, and I know it's like that for a lot of people.
Thank you!
Thank you Emma, Is, Mia, and Laura for your insights in this article. Thank you to everyone who answered my survey about what questions you would like to know the answers to.
About the author
My name is Lee, I’m a high school student, a girl guide, and proud member of the YDAS COVID-19 Working Group.