Travel is not spontaneous when you're me
Travelling in a post Covid world when Autistic
Today is ‘World Autism Awareness Day’ - and I am (still) beyond tired. I am tired of having to explain my existence and its nuances, or my basic access needs; I am tired of organisations speaking over people like me, and not in our interest. People like me are not a problem.
The issues around travel are the one thing I want to be understood; ‘can’t you just try doing…?” is always asked of me, to abdicate my access needs. This was an attempt from two years ago to explain - and I’ve taken off the paywall for today.
Hello! How are we all? It’s starting to feel… rather cold, isn’t it? And finally this seemingly endless year is finally coming to a close. At long last.
On this end, I am tired. Just extremely tired. And looking forward to having some time off - without access to my email - at long last. It feels like I have either been in the grip of finishing my book or dealing with sickness for most of this year - and a new start is always tantalising. If you want to hear more about that, you can read this piece I wrote earlier this year for Conscious Being.
Asides from one last culture list round up this year and a podcast episode, we have one pitching session left! This will take place on Wednesday 7th December at 4pm.
Stay safe x
If you would like to support this newsletter more, please consider buying a copy of my book! It would make my Christmas. You can order here.
New York City has always held a kind of glossy allure to me - possibly aided and abetted by allusions point forward by programmes such as by Sex & The City, 13 Going On 30, and other such media. Why wouldn’t you be seduced by a city where no one sleeps?!
At the time of when you’ll be reading this newsletter, I’ll be back again for the third visit - a pandemic project, if you like. Having arrived in March 2020 as a 21st birthday present, it was an experience - Broadway closed down the day I landed, a rather terrifying group of men with weapons inspected the plane I was on due to Covid, Tiffanys had doormen opening the door with a no-contact sheet (in brand colours, of course). It was absolutely terrifying.
Less than a week later the UK was in lockdown. 2 days into lockdown I turned 21. Unforgettable, that.
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One of the things I find hardest about functioning in this world is travel. Because, cue surprise; an Autistic person who can speak somewhat fluently still struggles!
Having had to prove this to the Department for Work and Pensions, as well as friends recently, I was sort of finally forced to admit just how tiring this is. There is a weight to the expectation of always being asked to justify yourself, to have the right words, the ability to translate across the neurological divide.
My geographical sense is terrible. My directional sense is beyond shocking - don’t ever trust me as a guide. I also don’t do buses as they are a sensory environment that is unbearable for long; I find the navigation system in the UK impossible, for example. The last time I took a bus by myself it was an emergency; the timetable was written in such a way that I was stranded for around 6 hours, narrowly out of the rain. (The meltdown in private was horrible as a result - from trying to keep it together.) Trains are better - but! But! I plan my routes by writing copious notes out. Changing the route is really stressful - too much so can also invoke a meltdown. I have disability aids to deal with the noise. I am never without my notebook. Changing plans or venues last minute also can be catastrophic without due warning.
Travel is not spontaneous when you’re me.
Travel is not spontaneous when you’re me, and no, this is not something I can just ‘switch off’, or ‘just learn’ to ‘grow out of’.
And I feel resentful at times at the expectation to explain every teeny tiny nuance of this; why can’t it just be accepted that this is a tricky facet of my existence? I don’t mean to be an inconvenience; at times I feel ashamed, too. though that is internalised ableism.
Some things have gotten better. Ish.
Back in 2020 I took advantage of ‘special assistance’ through BA. Though there was an element of talking through me, it was faultless. A reconstruction, if you will:
Me: (walks up to assistance desk, mother behind me) Hi, I was wondering if you could help me - I’m flying by myself for the first time, I’m Autistic, and need some help?
Assistance: (turns directly to my mother) What extra help does your daughter need?
Mother: (slightly taken aback) I don’t know, why don’t you ask her?
We may disagree on some issues, but I think I have trained her well on why this is not at all acceptable. Medical professionals still do this - when I’m the one being looked at - but still. We’ll get there.
Post Covid, I’ve been anxious about travelling again. I had to re-learn a lot of skills, such as when it came to executive functioning; so much more cognitive energy to put into additional measures! So many invisible rules! So many expectations in a pandemic, policed by the overly zealous and the unhelpful! I will not be taking off my mask in shops, crowds, restaurants; I don’t ever want to be that sick again. Trips to London have helped a bit, as well as going to Bath University and Birmingham on road trips earlier this year. But I can’t help but feel nervous.
There is a whole universe outside of our rather limited existence; I want to see more of it, experience culture, other ways of living. I craved the ability to travel in lockdown, with some of my travels having been prematurely curtailed. We are richer when not in isolation by ourselves.
Travel is not spontaneous when you’re me - and it also has a high cost to it at times, outside of the financial element. There is an emotional cost, a physical cost. But it shouldn’t have to be that way - and the lack of accommodations we societally provide gatekeeper this pathway to culture far too much.