Quick thoughts: On being “more disabled”, and more aware of it

This was, somehow, meant to be a tweet.

In early March, you could have had a fairly reasonable-sounding debate about whether you considered me “disabled”. What, exactly, was a penchant for Doctor Who and a tendency to shove multiple apologies into every sentence stopping me from doing? What right does someone like me, who was managing independently with an occasional office-bathroom meltdown, have to claim the label you also use for people who need more support?

The answer: Because however stable it seems to you, however stable it seemed sometimes to me, it is very very precarious.

Four months and a global pandemic later, I’m totally reliant on my parents. If I didn’t come home when I did, they wouldn’t have had much choice but to come and get me. Things are open now, but most of them are out of the question. If I tried to move back tomorrow, I’d get very stuck very quickly. Black-and-white thinking around rules – which wouldn’t be a problem if you actually followed them – is suddenly a one-way ticket to The Bad Brain Place. It means, in short, that I’ll be virtually in lockdown for longer than everyone else I see is (or was?). Potentially a lot longer; the fact that I can’t ride a bike – barely a footnote in my childhood memories a few months ago – suddenly threatens to kill off the old life, the independence and the communities I’d built entirely.

In March, this happened to many people at once. For some disabled people, though, events in their own personal life can be even more devastating. You never know when the rug’s going to be pulled from underneath your feet.

At the same time, suddenly phone calls weren’t a barrier, because everyone at work is using Teams and Zoom. Quizzes and other big events became something I could just take part in without much thought, enjoy rather than “get through”. Even as my unreasonable jerk of a brain has been an unreasonable jerk, it has been almost four months since I last hid in a toilet. I hoped that in the long-term this would improve accessibility, and in some ways it has. Still, it’s been jarring over the past month or so to see virtual events begin to dry up and people act as if video calls are a thing of the past – something they’ll dump at the first opportunity because they have a choice. (I’ve just had to block a beer ad that’s followed me across social networks since Friday with “Thanks Zoom but we’ll take it from here.” Probably the most irritating sentiment in the world…) A million thinkpieces on “Zoom fatigue” later, it’s become clear that a lot of people just aren’t willing to share the burden of the awkwardness and exhaustion that I feel in similar in-person interactions (and… maybe a fraction of what I feel on the phone?). We’re only asking to be met halfway.

It’s similar with face coverings. I don’t speak for every autistic person – some aren’t able to tolerate them at all – but I almost forgot to take mine off yesterday. I was surprised to discover that it bothers me less than most other extra layers, and much less than the too-small-too-crowded-too-warm rooms I’d assumed other people struggled with and just sort of put up with too. The sheer number of abled people who won’t take on a fraction of the discomfort even temporarily. Not everyone can wear masks, and the abled people who won’t puts them at risk – not only from COVID-19, but from stigma and harassment. It’s become virtually impossible to advocate for and support those people without it being co-opted.

On the flipside, many abled people assume that the “really disabled”, those with a genuine exemption, will have “the official documentation” and can produce a doctor’s note at a moment’s notice. The reality is that “registered disabled” hasn’t existed at least in the UK for quite some time, and many of us aren’t actively under any services who could provide that documentation. (Some services require documentation of PIP or other benefits as proof of disability, which is a whole other issue…) Most of the time, you just have to believe us. Abled people seem to find that hard.

Even the way re-openings have been prioritised makes me feel more alien than ever. You can congregate in crowded pubs, pubs I could never fully access to begin with, while I still can’t hug relatives or see any of my own friends. Just as was the case before the pandemic, that one specific way of socialising is deemed more important than anything else. Just as was the case before the pandemic, because I can’t do that, it’s assumed that I don’t want to socialise at all. (I do, and it hurts that this seems to matter less than the people who already could wanting even more.) And just as was the case before the pandemic, the anger and hurt at those who leave us behind isn’t taken seriously – we’re mocked as overly anxious by the right, and dismissed as overly divisive by the left. Yes, it’s the Government who made the decision to re-open venues and who should be held accountable for any consequences of that decision – but the culture that underpins it all and the ableism that surrounds it predates both this Government and the pandemic by centuries.

Some of this is not preventable. Quite a lot of it is preventable. And it all carries the same constant, gnawing message: The new world is here, you just don’t have a place in it.

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