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Coronavirus Disability
Illustration by Callum Abbott

Why coronavirus should change the way we see disability and chronic illness

Refusing to be waved away as the vulnerable ‘few’, people living with disabilities and chronic illness are staying vocal in the pandemic under #HighRiskCovid19

According to the waves of news reports and research papers on COVID-19, coronavirus is most dangerous if you are elderly or living with a chronic illness. People living with disabilities are not inherently more likely to catch coronavirus but – as the messaging around the virus constantly reminds us – fatalities are highest for those who are immunocompromised or have underlying health conditions, and many of those people are disabled. 

Coronavirus puts people living with disabilities or chronic illness at risk in other ways, too. You’re more likely to be lower-income or living in poverty, meaning that the economic impact of the virus will hit you harder – especially without sick pay or money to stockpile food. You’re more likely to rely on a carer, so it’s hard to self isolate and protect yourself, or to provide for yourself with groceries or medication.  

If you have a chronic illness or autoimmune disease, you may require ongoing medical care and thus be affected by a stretched or closed-off NHS. You’re also likely to have existent health anxieties, and thus a pandemic outbreak could seriously affect your mental health, something that has already been found to be happening, particularly for people with serious respiratory conditions or diabetes. 

Plus, as writer Lauren Nathan-Lane points out for gal-dem, while the rest of us stockpile hand sanitiser and wipes, what does that leave for other people who need them? “There’s no point in me washing my hands 20 times a day if I can’t then keep my self-propelling wheelchair or my walking sticks clean,” she writes. 

On top of this, there’s also the rampant ableism that coronavirus has brought to the fore. As disability activists and writers online have pointed out over the last few weeks, it’s not very comforting to repeatedly be told that you are in a vulnerable group while at the same time the rest of society reassures themselves that the disease “only” kills the fragile, elderly, and chronically ill. Despite being at high risk and all of the added complications above, people with disabilities and chronic illness have been waved away in many coronavirus conversations, while we’re told that “most people” will recover.  

In response to this, people living with disabilities or chronic illness are now posting on social media under the hashtag #HighRiskCovid19, to improve visibility around those in high-risk groups and to educate others about ableism. Charis Hill, a trans disability activist with Spondylitis and one of the co-founders of the hashtag, explains how it started.

“(Patient advocate) Molly Schreiber sent a message to a handful of us asking for help creating a hashtag to offer immunocompromised folks a place to share their pictures to show others what high-risk look like. We all connected with others in our networks to tweet pictures using the hashtag at the same time. Within minutes, it seemed, the hashtag was trending and it was exciting to see people feeling seen, especially when we have been fighting to be seen and heard for weeks in the face of messaging that portrays high-risk populations as disposable during this pandemic.”

Many of the posts serve as reminders that, by going outside and refusing to partake in social distancing, you’re putting people with conditions like cancer, MS, cystic fibrosis, lupus, and kidney disease (the list goes on and on) under serious threat. “I’m 21 and have had half a lung removed, meaning I now get regular chest infections and pneumonia. On a good day, my lung capacity is 70 per cent, on a bad day it’s 55 per cent,” writes one Twitter user called Ella, “if I get coronavirus I will almost certainly die and I really don’t want to. Please stay at home.” 

Disability activists and allies are also taking this moment to point out that, for people who are able-bodied or in good health, this could be the first time they are experiencing a lot of the things that people living with disabilities or chronic pain go through regularly, from limited access to public spaces to the mental strain that comes from isolation. As #HighRiskCovid19 founder Schreiber, who is immunocompromised, tells Dazed: “Chronic illness patients are used to having to stay home more than usual, to constantly worry about germs, to worry about how they will work or go to school if they were to get sick.”

“I have seen able-bodied people using #housebound on social media and felt sick” – @invalid__art

Mary AKA @invalid__art, a disabled writer, advocate, and activist from Bristol has also seen this happening, and on top of that has had “more genuine offers of delivery of foods in the past week than ever in my 18 years of illness”. Some of the new conversations they have seen online have caused conflicted feelings.

“As a predominantly housebound person (I hate that word), I have seen able-bodied people using #housebound on social media and felt sick,” they explain. “My life has been deeply impacted by my lack of access to the world, especially inflexibility around remote medical appointments, education, and employment. Seeing it all suddenly become possible after being ‘impossible’ forever... it’s good, it’s exciting, and it really, really hurts.” 

The social model of disability (which is now being expanded upon by lots of disability scholars and activists) explains that it is not impairment or difference itself that is disabling, but society’s lack of provision for those who are differently-abled, as well as negative attitudes. Many people are pointing out how the impact of coronavirus clearly illustrates this idea. 

In a recent viral tweet, disability campaigner @jocyofthedragon wrote: “My school just went full online and I dropped out last month because I was told that I couldn’t go online part time for my disability or care assistant reasons. This is BULLSHIT.” 

Similarly, a thread by @Imani_Barbarin writes: “So, you’ve probably seen mine and other disabled people’s pissed off tweets about the response to the #coronavirus. You’re probably wondering why we’re #DisabledAndSaltyAF.” They then explain how companies that have denied people with disabilities employment, access, and flexible or remote working arrangements are now allowing all of their staff to work from home. “Imagine my surprise (all disabled people’s surprise) when because of the #coronavirus, all of the accommodations we have been denied because we’re disabled have suddenly become available.”

It’s a shame that able-bodied people have to experience these things for themselves before they think about how they might affect disabled people all the time – but that has long been the case, before the pandemic. With this in mind, one positive thing to come out of the outbreak – which has at this point caused over 7,000 fatalities – could be for individuals and organisations to rethink how they treat people with disabilities and chronic illness, as well as their rights. 

Firstly, says Charis Hill: “It’s important for employers to remember that disabled people have been requesting accessible work-from-home policies for decades. Let’s use this as an opportunity to hire disabled people to create ongoing remote-work policies that extend beyond COVID-19. So many disabled people are unable to work because of employers creating barriers, not because our bodies keep us from working. We’re pros at working from home.”

Secondly, we need to change our patterns of behaviour, and not take an out-of-sight, out-of-mind approach to caring for people with disabilities, chronic pain, or invisible illnesses. As Nathan-Lane’s gal-dem article explains, community care is vital: donate to charities and food banks, and ask disabled people you know if you can do anything to help or provide for them. 

“Illness affects all ages, genders, ethnicities” – Molly Schreiber, founder #HighRiskCovid19

Thirdly, we can shift our thinking. According to Molly Schreiber, this is also a good time to consider our privilege, the sobering fact that “at any moment you or a family member could be diagnosed with a serious health condition” and that “illness affects all ages, genders, ethnicities”. 

As a recent New York Times article highlights, we need to realise – particularly at this moment, but also going forward – that we actually have a great deal to learn from people with disabilities’ experiences in terms of how to cope with isolation, how to be more cautious and hygienic, and how to think very consciously about our own health and other people’s. 

“What we can hopefully take away from all of this, is that it’s really fucking hard to have resource-uncertainty,” concludes @invalid__art. “So stop trying to diagnose us with mental illnesses and over-medicate us, and use this opportunity to accept that we need safer conditions with better access to full life – only then we will thrive.”