Being Disabled: Notes on a Pandemic

{This series is based on my personal experiences re. living with disability, in my case Chiari & Intracranial Hypertension with Migraine & assorted comorbid unpleasantness, that has kept me housebound for several years.}

Disabled folk are used to being ignored. We are perceived by most employers, many of our past or present colleagues and even by friends and family, as being wildly inconvenient.

It’s not unusual for human beings to turn away from things that trigger uncomfortable feelings. Both loved ones & work-related folk can find us disabled people difficult to deal with. They may feel irritated, guilty or wary re. the disabled person in their life. Whether it’s due to social awkwardness, fear of witnessing the devastation that disability can cause up close or just reluctance to bother with adjustments to make the work place or social environment more accessible for us, the end result is always the same – disabled people being ignored.

So when the world was turned upside down by the COVID-19 pandemic, it didn’t come as a surprise that it a took a while for people to remember that disabled people exist & that this global disaster would have a different impact on us than on the abled population.

Unfortunately, the society that often ignores us remembered our existence in the most insulting way possible. I lost count in the run up to the UK’s lockdown of how many times people used words to the effect of ‘ not to worry, it’s only disabled/people with pre-existing conditions who are at high risk from the virus.’ Abled people said this quite openly, on TV, across social media platforms, everywhere. The fact that the virus turns out to be much less selective about who it kills or causes to suffer horribly is beside the point; I can never forget the sentiments that abled people comforted themselves with as danger hurtled towards us all. In one fell swoop, disabled people went from being an awkward, burdensome difficulty that’s best ignored to the acceptable casualties of a pandemic. We found ourselves having to remind everyone that a) we’re right here, we can hear what you’re saying and b) we don’t deserve or want to die any more than abled people do. Our deaths would be no less of a tragedy than yours, thanks very much.

Some who didn’t like the sound of a lockdown demanded to know why we couldn’t be forced to remain isolated indefinitely, leaving ‘normal’ people to get on with life as usual. Who cares if chronically ill and disabled folk are pushed out of sight and mind, right? The implication was writ large for disabled people – you’re not proper people, not like the rest of us. You won’t mind being shut away from society; it’s not like you contribute anything, is it?

To add insult to injury, abled people had (and still have) a variety of poignant feelings and nuanced takes on the isolation that the lockdown has brought about for them. Some insist that anyone who doesn’t emerge gloriously back into the light with a new skill or language to their name has squandered an unprecedented opportunity. Others describe at length the impact that these weeks of isolation is having on their emotional and mental well-being. Many sing the praises of the tech being embraced to facilitate working from home and predict that it will become part of a ‘new normal’ in post-COVID-19 society.

I know about the many and varied opinions and feelings of abled people re. involuntary isolation at home because the articles and interviews in the media on the topic have been relentless. This has left myself and many disabled people (thank God for Twitter, it’s how I know I’m not alone in this) with a number of unsettling questions. Many of us in the disabled community have been housebound for years – why is nobody asking us, or even paying us to write about, the hardships and coping strategies that we’re all too familiar with? Why are workplaces suddenly so adept at using technology to facilitate people working from home, when even small accommodations that we ask for are treated either as great favours or total impossibilities (or even as indications to management that we may prove tiresome as employees & should be ushered out the door at the earliest opportunity)? Why is it only now that the entire nation is suddenly able to arrange group catch-ups on Zoom and family chats on WhatsApp, when many disabled people have been alone and isolated in their homes for much, much longer than a few weeks without such efforts to maintain human contact being made?

There is only one answer to all of these questions – disabled people don’t count. We are not thought of. We are not factored in. We are ignored.

It has been galling to witness the accommodations, understanding and support that non-disabled folk have offered to each other en masse, knowing from experience that disabled people who are forced out of workplaces into complete physical and social isolation by their conditions are treated very differently. We get a government who dumps austerity cuts on our heads while making it a draining and incredibly stressful process to claim the benefits we are entitled to. We get endless ‘documentaries’ and articles implying that the actually very small percentage of disability benefits claimants who are frauds (and always seem to have obnoxiously physical & expensive secret hobbies like ballroom dance or deep sea diving) are in fact the norm. When it comes to family and friends staying in touch…let’s just say that for many disabled folk, it ain’t all group chats and Zoom family chit-chats.

Some people expect the pandemic to leave behind an altered society, a ‘new normal’. Who knows, maybe they’re right. God knows our society needs to value and pay a decent wage to our NHS and key workers. Our environment would certainly benefit from more work being done from home. Attaching the proper value to our family and friend relationships and looking out for each other as a matter of course would undoubtedly be good things. I’d love to see such changes come to pass.

The trouble is, I’ve seen nothing to suggest that any of these positive changes to our societal priorities and values, were they to take root, would benefit disabled people. Many disabled folk will continue to be partially or entirely housebound once this lockdown is over. And I fear we’ll be as easy to disregard and ignore as ever.

Disabled readers – what has your experience of this pandemic and lockdown been like?


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