Greetings from my boyfriend’s flat in Dover, where last weekend we decided I should see out the heatwave. I decided to get the blog out while I was still here, partly so I had something to do while said boyfriend was busy creating elaborate memes, but mostly so I could pre-empt the more extreme weather to come. This isn’t really about that. This is about the more normal, everyday things we find difficult, but for whatever reason feel too guilty to do anything about.
In case you’re new here, I’m autistic, and heat just happens to be a giant cocktail of sensory overload, big anxiety and the bad side of my obsessive tendencies. (I’ve written about it a frankly unhealthy number of times before!) At the time, the London forecast was only just nudging 30, but for a full week, which freaked me out a little because the usual strategy of “accept things are going to fall apart for a couple of days” wouldn’t cut it – I’d have to go out and get things done and be a functioning human at some point! I sent Filip a message to that effect, and he said “Come to Dover, it’s usually a few degrees cooler.” I said “I definitely can’t become your problem every time weather happens!“
40 minutes later, I checked both forecasts again. “…Were you being serious?”
The sensory-anxiety interaction makes it difficult to judge the right thing to do. The forecast says “RUN”, and I have to decide whether to go with that or not. On the one hand, I don’t want to perpetuate the anxiety problem through avoidance and never learn I can cope; on the other hand, no amount of learning I can cope is going to budge the meltdown potential. I’m never sure I’m getting the balance right. But this made sense. I’d asked about working from home on my usual office day anyway because I was doing a virtual conference and didn’t want to take up meeting space. I’ve worked from Dover on the odd day loads of times over the past few months. A combination of “being on the coast” and “having someone to stop my worries running away” meant I’d be a more functional human being, which is ultimately better for my work too. And if I wasn’t so obsessed with The Weather Numbers (band name idea), it would look like a completely normal visit to see my boyfriend that nobody would think twice about.
But still, there was the guilt. You’ll be familiar with the guilt if you’re in any way disabled, and probably also if you’re not. It’s the thought that says “it’s not that big a deal” and “this is an over-reaction” and “why should I have it easier when not everyone can” and “other people have it worse” and “other people manage this better so why can’t I” and doesn’t care that half of those things contradict each other. The thought that boils down to “this is a bit silly and/or a bit weird and you definitely don’t deserve this.” If you’re not careful, the guilt can seep into the most mundane things. Back in The Before Times, I felt like this when I bought a tiny little USB fan that’s literally mass-marketed as an office accessory and which was noticed by precisely nobody ever. It always seems silly afterwards.
Could I have managed if I’d stayed put? Pretty much. (At least until Met Office amber warnings got involved – but again, that’s a different scenario I didn’t expect at the time!) Have I been more focused and more productive as a result of hiding in a port town rather than an urban heat island? I think so. Have I been calmer and happier? Definitely. Who would have benefitted if I’d stayed where I was and hoped for the best? Nobody whatsoever.
This is all very specific, but the principle isn’t – if it’s possible and harmless, you might as well do that thing that’ll make your life a bit easier, whatever that thing is for you right now. Don’t wait for a magic threshold of “bad enough” or “disabled enough” or “deserving enough” that will make the guilt go away, because that’s unlikely to ever happen. The guilt was never warranted. You are probably your own biggest critic, and most other people are too wrapped up in their own lives and worries to bother judging yours.
Of course, “if it’s possible” is doing some heavy lifting there, and I got very lucky with circumstances. First of all, my boyfriend happens to live in Dover, happened to be stuck on call this week anyway, and happens to still not be sick of me alternating between hourly weather forecast updates and this one YouTube video, and I’m incredibly grateful. But also: I can still work remotely, my employers are understanding about “WFH” not being my actual home for the week, the Autistica Festival I’m helping out at is virtual (and you can still catch tomorrow’s sessions!), and the London Autistic Conference I was speaking at was also virtual. This is just one small reason why we shouldn’t be throwing out virtual events and the possibilities of remote working entirely. Even if we weren’t still in a pandemic – which we are – disabled people had been calling for greater flexibility for years. The guilt is bad enough without other people imposing it too.
For children and young people, the argument often takes a slightly different tack: “we have to prepare them for the real adult world.” This always struck me as circular, because disabled adults need adjustments too – but I’ve come to realise it doesn’t even always ring true from the adult perspective. It all depends on the context of course, but in my job I can wear what I want (within reason!!), and work however and wherever I work best as long as it gets done – freedoms that don’t really apply at school. We already give young people a much harder time than adults for the sake of preparing them to be adults – surely we don’t need to pile more on top!
Even before all the really scary forecast models, this was never about total avoidance. It turns out that going outside sometimes is good for you and most other people still want to do that, so I’ve definitely got more steps in than the just-above-zero I’d have done at home. I’m off Twitter for the duration as usual, but I’ve basically just replaced it with constantly refreshing the same few weather forecasts and news articles. Then, of course, the Really Big Weather Numbers still followed me here. It’s not a perfect escape, but it’s taken the edge off, and that’s still worth doing.
Being brave is all well and good, but sometimes, you might as well do the kind thing for yourself and run for the hills.
Mind the Flap 
Great blog Georgia. Also The Weather Numbers really would make a great band name 😆
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