Send Me More Stories About Chronic Illness
Prior to COVID-19 spreading, I argued with my dad about the apocalypse.
Citing post-apocalyptic Stephen King books like The Stand in which a global pandemic kills off most of mankind, or The Dark Tower series where one of the protagonists is a woman in a wheelchair, he suggested that people would help each other if the world ended. But I wasn’t so sure. Based upon my own experience as a chronically ill person, I believed—and still do—that sickness would be seen as a weakness, making us expendable. And so far, the coronavirus pandemic only seems to have confirmed my suspicions.
As a person living with multiple sclerosis, who also takes an immunosuppressant medication, I’m considered high-risk, meaning that I really don’t want to get coronavirus. The only time I left the house in the past month was to attend a hospital treatment I couldn’t miss.
The hospital trip was not without its own horrors. Because I live on an island, I’m required to get a ferry to the mainland. Despite the pandemic being in full swing, passengers can only stay in their cars on certain sailings, due to the ferry company’s cargo rules, meaning that avoiding a potential COVID-19 carrier isn’t easy.
The disabled population has all but been forgotten about during the public COVID-19 panic. So much for Steven King’s idea that people would support one another in an apocalypse…
When I arrived at the port for my return journey, a member of staff made me open my car door so that they could hand me a leaflet. To make matters worse, the staff member was unmasked, and wore no gloves. I emailed the company, asking that they implement safer measures for the sake of immunosuppressed passengers like me, or anyone who doesn’t want to come in close contact with another human being right now. The response implied that I was overreacting, and reinforced, once again, that people with underlying conditions often aren’t taken seriously, or into consideration at all.
During the coronavirus pandemic, access to essential items like medication also becomes a crapshoot, and getting an online grocery delivery window is akin to snatching a bouquet out of a bridesmaid’s hands. Soap is the most precious commodity that I simply can’t buy, and fresh fruit is never in stock. These issues suck for everyone, but without necessary accessibility measures in place, many disabled people can’t access groceries at all, which is hugely problematic.
In the wider community, supermarkets are facing legal action from disabled shoppers whose access has been denied. There is also a shortage of hydroxychloroquine, ordinarily used to treat lupus and rheumatoid arthritis, following President Trump’s endorsement as a cure for coronavirus, despite there being no medical evidence that it works (and some evidence suggesting it actually increases COVID-19 mortality rates.). Meanwhile, those that live in group or residential homes have found their care stripped back, and inadequate preventative measures in nursing homes have led to a truly shocking death toll among residents. In the UK, The Center for Public Integrity notes that current guidelines “permit hospitals to take ventilators away from patients who use them as breathing aids in everyday life and give them to other patients.”
Health is as reliable as a Rotten Tomatoes score, which is why accessibility matters so much, even during a mass crisis.
The CDC has been crystal clear: the already sick and disabled are at the highest risk from coronavirus. However, instead of eliciting a protective response from society at large, the disabled population has all but been forgotten about during the public COVID-19 panic. So much for Steven King’s idea that people would support one another in an apocalypse scenario. Why are the lifelong sick an afterthought, or worse, being sacrificed in favor of “young and healthy” people?
In the United States alone, one in four people live with a disability, and another 1 in 4 will experience five years of disability or more in their lifetime. In this way, disability is the great leveler, and there’s often no way to predict it. For instance, contracting COVID-19 could trigger a latent autoimmune disease that had lain dormant in a person for decades. Or, like me, you could wake up tomorrow and struggle to walk because you’ve had MS for years but never knew. Literally anyone can get sick, which is why disability should never be an indicator of worth. In many ways, health is as reliable as a Rotten Tomatoes score, which is why accessibility matters so much, even during a mass crisis.
My dad now concedes that society hasn’t panned out the way he’d hoped, and that people aren’t behaving the way they do in The Stand. But I can’t fault him for hoping that we lived in a world that didn’t automatically throw disabled people in the trash because perceived “wellness” is the only thing that matters. Because if you suddenly learned you were disabled or ill, wouldn’t you want the same chance to live as anybody else?
