When I was diagnosed with autism in 2003, the story goes, my parents were left to look it up for themselves. What they found was a long list of things I’d never be able to do: I wouldn’t leave home, I wouldn’t build a life that they didn’t have to set up for me, I wouldn’t reach the milestones of “growing up” like my brother would. But, the story continues, I repeatedly proved everyone wrong and did it all anyway. And we all lived happily ever after.
It’s 2020, and Dr Google was right. I am learning that this is okay too.
At no point this year have I stayed at home because Boris Johnson told me to. Very rarely have I chosen to stay at home out of civic duty, because it was the right thing to do. I didn’t get the chance to make those choices – it was still early March when I went to pieces. I realised that I had to return to the safety of home-home long before we were told to stay home. Since then, this home has remained the only viable option.
The pandemic itself – not the lockdown, the actual pandemic, the fear and uncertainty and the impossible choices it creates – has made the world inaccessible to me. If all legal restrictions were lifted tomorrow, this would not change. If the pandemic ended tomorrow, I don’t know if or when I’d be able to adapt to something like my old life again. We could spend all day apportioning the blame, but for now I’m more interested in the end result: This is just the world now, and I don’t have a place in it.
(I do, actually – I’ll get to that later – but you can see where I’m coming from.)
The hope, re-ignited by the vaccine news, is that this really is temporary and I will get better – “better” as in “back to exceeding all expectations”. The gnawing fear is that I might never get better, and this is just it now – “it” as in “I’m 26 years old and reliant on my parents”. As far as childhood predictions go, that’s a respectable par. In my head, it’s the ultimate failure.
I’ve been running from it for a long time, across cities and countries, just to show the world that I could, – until I couldn’t. Even if it’s temporary, the present moment happens to looks a lot like my biggest fear: becoming the person I was supposed to become. And what would be the point of me then?
(Again, I’ll get to the point of me later – just follow the logic.)
Don’t get me wrong; I’m proud to be autistic, obviously. Autistic people deserve acceptance, obviously. But that’s for other autistic people. Truth be told, I’m not very good at practising what I preach.
See, you like me when I defy expectations. You like me when I prove you wrong. You like me when I can pretend I’m like you. You like me even more when there are differences that look good – a set of A-grades (“see, what’s the problem?”), a year abroad, talking about autism constantly and being there when the media showed up, a job (and another tick in the “prove them wrong” box). You like me when I’m something to brag about.
You use words like “inspirational”, even though that means causing people to change, and you do not change.
You don’t like me when I need you to change. You don’t like me when I melt down. You don’t like me when I stim or when I tic. You don’t like me when I can’t get my words out, when the sentence turns into a string of apologies. You don’t like me when I like the wrong things too intensely. You don’t like me when I’m anxious. You talk about refusing to live in fear as if it was a choice; as if fear was the most shameful thing a person could possess. I stand out like a sore thumb, I don’t see things the way you do (the right way), you want to show the world when I speak but you don’t want to actually listen.
You like me when I over-compensate. Compensate. For something bad. Only now have I been forced to accept that I am already enough.
This is the point of me:
Family film nights, games nights, conversations. Being here for the little moments I’d have missed. Seeing people virtually more than we could ever have managed physically.
The friendships grown and nurtured, somehow, almost entirely over Zoom. Virtual events – all the quizzes (mostly Of Rassilon), without hiding in the bathroom staving off a meltdown. Watching literally all of Doctor Who, however slowly. Building support networks on the foundation of a time-travel show.
Finding a song that I like and skipping back, and skipping back, and skipping back, and giving up and hitting the repeat button. Getting a year-end report of the songs I looped the most, and analysing it to death. Putting every Muse song into Preference Revealer, and analysing it to death. Falling in love with each one all over again. Going out for a run to the 25-minute Dream Nails album in the freezing cold and remembering that this is my optimum and I’m a chaotic ice demon, or something. None of this really helps anybody, but all of it is worth so much to me.
This is my place:
The dining room table from which I run a charity coalition, until dinnertime when Mum gets her seat back. (It’s next to the plug sockets.)
The stuffed-owl-populated bed I sit on for virtual meetings; concert T-shirt below the webcam’s reach, emotional support cactus in full view.
Sorry, sorry, sorry, sorry, bear with me, sorry, sorry-ing my way through plans to bring attention to the people forgotten in the crisis, what to do about access to healthcare, what to do about the vaccine priority list.
These days, it doesn’t always feel like it might change the world. In a time where words and actions that harm disabled people come from all sides, a constant undercurrent of “the world doesn’t have a place for you” that echoes my own worst thoughts, it sometimes feels completely futile. It isn’t. A small push in the right direction, making a few individuals stop and think, teaching a few individuals something new, bringing a few individuals together, and those people all do the same, and some of them have more power and influence – changing the world in the tiny but important ways that every person does.
Things could easily have been different. I could have had an employer who bought into the Save Pret narrative, pushed me back to the office in August, and you’d have called it “progress” and “overcoming anxiety”. It would have ended very badly, and most likely with an emergency road trip to bring me back home anyway. I am incredibly lucky to be able to do a job that I love, within the shrunken parameters of my new world, in a ruined economy. This shouldn’t be the criteria for having a place.
So, this is also my place:
The minor social responsibilities I’ve picked up from being this obsessed with sticking to plans – posting the office crossword, signing up the quiz team, owning the Jackbox Party Pack.
The same bed, but the calls are filled with loud laughter. Building a rich tapestry of in-jokes that can’t be repeated here: they’re all either too nonsensical or a massive violation of privacy. Playing Quiplash in what must look like a second language.
Writing and posting a throwaway comment that makes one person laugh or one person think twice or one person feel less alone.
The moment that Laura from Couch to 5K tells me I can slow down.
Galaxy 4 reconstructions, begging me to hurry up and watch them.
You tell me, repeatedly, that this is not a life.
You went back to mocking online interaction the second that you, personally, could leave it behind for a while. You loudly can’t bear to be without the things I can’t even get close to having, even when the world is at stake. You’ve moved on, so far ahead that the rest of us are barely a speck. You’re debating exactly how many scotch eggs you need to buy to get pissed, which is about as relevant to my new world as how many scotch eggs you can send into orbit. Constant reinforcement of what’s already in my head: that the world in 2020 doesn’t have any space for me to do or be anything of value. Evidently, that’s wrong.
I’ve been worrying more about the future recently – the best case scenario involves suddenly having to adapt back into a busy independent life in a big overwhelming city, after the battering of 2020, in the middle of summer. This is progress; I’m acknowledging a future. I don’t want to hope too hard though, because it might not happen. I want to remember that if that particular future doesn’t work out, that’s okay. That my worth is not defined by ableist ideals of success. My worth has been right here all along.
I understand that your instinct is to say “don’t worry, you’ll get back there.” I probably will. There’s a chance I won’t. Others definitely won’t get there – disability and exclusion pre-date the pandemic by a very long time. Those people are still enough. We are all enough.
Mind the Flap 