Awareness is a low bar – and in the pandemic, we’re still falling short

This week, for the first time since COVID-19 hit, I’ve started seriously planning my return to the London flat. I’ll have to start slowly at first, maybe a weekend. I’d grab some food from the local shop, maybe take pictures of trains in the park (it’ll take a few more steps before I can actually use them), maybe see one friend outside (but only if they’re able to come to me), perhaps work from home in the flat for a day as a test run. This is my tentative, optimistic, might-go-wrong, hopefully-in-May fantasy – and it consists almost entirely of things that were never taken away from most people, even in full lockdown.

All the debates around lockdown, from all sides, ignore the experiences of many autistic people – not high-risk for COVID-19 itself, but still facing extra consequences from the pandemic. Unable to get out to the supermarket, but not qualifying for online delivery. Left without healthcare because they can’t use the telephone. Hit hardest by the impact of uncertainty on mental health – often dangerously exacerbated by our Government’s tendency to leak changes in the press at 11pm on a weekend night, and track record of delaying lockdowns even when they became inevitable. Being dismissed as “everyone’s in the same boat” and then having to watch as the world moves on without them – for many neurodivergent people, last summer’s easing of restrictions did nothing to alleviate these difficulties.

For some who were previously living independently, all of the above and more has made that impossible. Many autistic people – those of us privileged enough to have family willing and able to support us – have had to move back to square one, often away from the communities where we built our adult lives. On the one hand, this means we can’t take any meaningful steps out of lockdown; but on the other hand, we can’t control household activity, so our continued “lockdown” still isn’t good enough for others who are choosing to remain cautious. It complicates access to GP services, voting, social care – but also our friends, hobbies, and independence. Yet in a year of constant debate over the pandemic response, I have never seen this acknowledged. The only people talking about this – usually in private, with each other – are the people living it.

The pandemic response has, however you look at it, prioritised spending and holidays over my ability to live at home. Because I’m lucky enough to have kept my job – which I can do from home, and for which my employer didn’t insist on a pointless return to the office last summer – I can keep the flat, so I stand a chance of getting some of my old life back. Others in similar situations do not. The world is okay with this, because autistic isolation is normal. After all, it’s what we’re supposed to want.

The differences in how autistic and non-autistic people communicate can mask the isolation too. For example, in October, a friend from university was passing through my town and dropped in to say hello. After that, I stopped saying “I haven’t seen any friends since March”, because that isn’t true – some people literally haven’t seen any friends since March, and it would be unfair of me to claim that experience. Non-autistic people tend to be more… relaxed about literal meaning. When they say “I haven’t seen any friends since March”, they often mean “apart from all the times I’m not telling you about” or “apart from all the times I’ve found reasons not to count”. I’ve steered clear of talking about “a year in lockdown” because I haven’t been in full lockdown for the entire year – as a family, we’ve seen people and had the occasional outing when permitted – only to see the phrase used by people who essentially lived normal lives for four months. Depending on who you’re talking to, “following the COVID rules” can mean anything from “following all non-legally-binding guidance to the letter” to “feeling a bit guilty when you hug people”. Autistic people are more likely to be in the former category, with all the extra impact that entails – but if circumstances have made full compliance impossible, we’re perhaps less likely to claim it, and it goes under the radar.

Some disabled people have been told outright this year that their lives are less valuable – often backed up with do-not-resuscitate decisions. For others, the message has been more subtle. It’s in the complaints at “only” being able to do more than I can, “only” being able to do things in the only way I ever could. It’s in the comments of “if you’re scared, just stay home” even as you talk about how unbearable lesser restrictions are for you. It’s in the view of fear as the most shameful thing a person can have, something to eradicate by force or a joke to be mocked – often while throwing around mental health as justification for whatever they personally want to re-open. It’s in the removal and mockery of changes that have benefitted some disabled people – the ability to work, learn and socialise from home – as soon as abled people no longer need them.

Recently, there’s been outrage over the potential for vaccine passports to create more freedom for some people than others. For many autistic and other disabled people, that was already the reality – during and before the pandemic. Yet in the general lockdown conversation, we’re nowhere to be found. Out of sight, out of mind. It isn’t even visible in our own awareness month – we’ve shifted from generic platitudes to squabbles about whether those generic platitudes should say “acceptance” or “celebration” instead, rarely moving beyond those platitudes to the substantive issues.

There have been a handful of times where the autistic experience of the pandemic has touched on the mainstream debates. I don’t think it’s a coincidence that one of these instances was face covering exemptions, which happens to be the only aspect of our experience that abled people can exploit – not that this coverage has stopped disabled people facing abuse, even from those who are breaking less visible rules around distancing and indoor gatherings. Then there’s the “shock” over DNR notices, which seems to re-occur every few months with no change. Everything else is left to autistic people to shout about, and that’s less likely to happen when we’re too busy keeping our own heads above water.

Around this time every year, the phrase “everyone’s already aware of autism, now we need acceptance” crops up, and it’s true. Awareness – the basic acknowledgement that we exist – is not enough. Awareness alone, even if you’re labelling it something else, is not a useful driver for change. Awareness is a very, very low bar. But in the pandemic, even this seems to be too much to ask for.


One thought on “Awareness is a low bar – and in the pandemic, we’re still falling short

  1. Pingback: Happily ever after? | Mind the Flap

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