As someone with an autoimmune disorder, asthma and a whole host of other chronic illnesses and disabilities, I’ve barely left the house in almost a year, apart from to walk my dog. So when news of the vaccines broke, I was relieved that I might finally, one day get to hug my family again. The vaccine brought a new hope that there was a light at the end of the tunnel.
However, despite being vulnerable, I wasn’t at the top of the UK vaccination priority list. In fact, I wasn’t even in the top five. As I’m under the age of 65, I fell into the sixth priority group of the UK vaccination program: “Adults aged 16 to 65 years in an at-risk group or long term condition.”
While I waited, I accepted an offer to get a much-needed operation ― on the understanding that here in the UK, all nonemergency surgery was being extradited to private hospitals, minimising my risk of catching the virus I was terrified of succumbing to.
After waiting for what felt like forever, the day finally arrived when I would get the vaccination to protect me against coronavirus.
I entered my local vaccination centre feeling excited and a little giddy, but that feeling soon disappeared.
On check-in, as I confirmed my details with a volunteer, I felt as if he and his colleague were suspiciously eyeing me up and down. At first I brushed this off; I was four days out of an operation to remove my ovaries so I didn’t look in the best shape. I was disheveled and exhausted and had pulled on the first clean clothes I could find.
“Here we go, I thought, another non-disabled stranger thinking they’re entitled to my entire medical history.”
But I was confused when instead I was asked, “Are you an essential worker then?” I replied with a somewhat bewildered, “No.” Undeterred, he asked, “So why are you getting the vaccine?”
Here we go, I thought, another non-disabled stranger thinking they’re entitled to my entire medical history.
After almost 20 years of having others constantly trying to dictate my identity, I’ve finally become good at setting my own boundaries, so I didn’t give him any details. I replied, “I’m on the vulnerable list” and carried on.
I was experiencing pain in my pelvis from my recent operation so I was struggling to stand. After I asked a different volunteer if I could sit down in one place in the line as I couldn’t move around the waiting room, he loudly relayed the information that “The young lady sitting down is waiting for her vaccine! She needs to sit cause she’s had an operation” to other volunteers who equally expressed an interest in me as if I were a sideshow attraction.
Roll up, roll up and see the wondrous mythical young disabled person! Quick, Bob, get a picture!
At this point, I was ready to see a professional who would, I hoped, be a bit more understanding. While the nurse was lovely and professional, she still asked out of curiosity, “How are you getting the vaccine?”
Caught off-guard, I gave her a brief history and even accepted her condolences when she expressed how awful it must be for me at such a young age. Those are usually the only two responses you get as a young disabled person: disbelief or pity.
I’m lucky that the vaccination setting was the only place I had my eligibility questioned. I attributed this to years of curating my friendship groups and cutting out anyone who doubted my disability or made me feel small. On social media, I’m a big fan of the block button.
Unfortunately that can’t be said for everyone. Some disabled people who’ve excitedly posted about their vaccinations have faced criticism from people suggesting they’re cutting the line or cheating the system, with comments like, “Oh, I didn’t know you were over 65 or a health care worker.”
To an outsider, asking this question might seem like harmless curiosity, but these comments nearly always come from a place of ableism and assuming that young people can’t be ill or disabled. Furthermore, health issues are a deeply private experience, and you’re not entitled to know.
“To an outsider, asking this question might seem like harmless curiosity, but these comments nearly always come from a place of ableism and assuming that young people can’t be ill or disabled.”
As a relatively young disabled person, whose illnesses are primarily invisible (except for on the rare instances that my pain gets so bad that it causes me to use a cane), I’m used to non-disabled people not believing that I’m really sick, or worse, thinking I’m making it up in order to get special treatment.
From the time I was a teenager, I’ve had people make sneering judgments that I don’t even look ill, so I must be lying.
At school it was that I didn’t really need a pass to use the toilet; I just wanted to get out of class. Or that I couldn’t be bothered to write, so I had a special needs teaching assistant copying out my notes. Later, as an adult, it was that I could afford to pay for the bus or I wasn’t old, so I didn’t need a free pass. When I was too ill to work and claimed benefits, I was scrounging off the state because ― you’ve guessed it ― I was lazy.
Whenever a disabled person gets reasonable adjustments that bring them up to the same level as their non-disabled peers, it is deemed as more than we deserve or special treatment. People expect us to beg for scraps instead of claiming the things we require to live our lives fully.
Considering that six in ten coronavirus deaths in England have been disabled people, you’d think there’d be national outrage and a campaign to make sure that all disabled people are vaccinated. But that would mean us getting what we needed to survive, or as others are seeing it “jumping the line,” since they deem us unworthy of survival.
At the end of the day, you can’t know someone’s complete medical history just by looking at them – and it’s none of your business in the first place. The only way we’re going to beat this virus is if as many of us are vaccinated as possible. So if you think someone isn’t deserving of a vaccine, maybe you need to reassess which lives you actually value.
Rachel Charlton-Dailey is a freelance journalist. This article first appeared on HuffPost Personal