These Things Matter

Sometimes you don't have the spoons to do big things.

Sometimes you only have the ability to do the bare minimum to get through your day.

We all have days like it, just that some of us have far more days like it than others, because for some of us the world is less accessible and takes more energy to navigate.
On days like these it's very easy to feel like you're letting people down. I don't just mean the usual friends and family you have to call on for help last minute, the appointments you have to cancel, the phone calls you forget to make etc. I mean in terms of: what am I contributing to the world right now?

For activists this is something we struggle with a lot. How can I call myself an activist if most of the time I'm just sat at home doing art, watching netflix and hiding under my duvet feeling like shit?

What if all I'm currently capable of doing is just trying to look after myself the best I can?
I'm not really helping anyone, am I?

It feels shit thinking like that. Really shit. Thoughts like that go through my head almost daily.
But yesterday I had a slight moment of 'oh!' in regards to it and I wanted to share it on here.

I had gone down south for a friend's wedding and yesterday was the day I was travelling home.
As it happened a series of things, which didn't make me feel great, happened in close succession, two of those things being: I started my period and so had horrible cramps, and; my leg decided that it was a great idea to give me pain in my hip, my knee and my ankle at the same time.
I was tired, people-ed out, in pain and I just wanted to get on the train, sit down, get my headphones in and tune the world out.

Except it didn't go quite like that... because of course it didn't ¬_¬

The luggage area of my carriage was full. Not just full but overfull, to the point where the only place for my suitcase and bag was in the vestibule leaning almost against the door....where it was likely to fall out whenever someone tried to get on or off the train.
Nevertheless I couldn't see what else to do with it, so I left it there and went to get my seat. Only to find it occupied.
But I've done trains before, I have a script for this: 'Excuse me, I'm afraid that's my seat'
Unfortunately the lady in question does not go with the script, instead, the lady next to her turns round and explains that she's the elder lady's daughter and they hadn't been able to book seats together so they'd used my seat and was I ok taking her seat instead?

Now that in theory wasn't a problem. Except that a) I wasn't expecting that response b) I'm standing in a packed train carriage with people staring at me and that's already making me feel anxious and now I'm being asked to think up an unscripted response on the spot and c) the seat she's offered me is facing backwards on the aisle, and on a table whose other three seats are already occupied, AND someone's got their bag on the seat so I'd have to get them to move it.

All of this combined meant that I basically flapped my mouth silently for a moment and then turned and scuttled back to the vestibule in a small panic.

So now I'm stuck. I crouch down next to my suitcases and start trying to work out how to tell the conductor my situation. Because it's not exactly easy to explain to someone who probably doesn't experience it themselves, how daunting an unexpected change can be and how you don't always have the mental energy to handle a simple change like sitting in a different seat.
But the new problem was that I didn't really have the full energy required to script what I wanted to say to the conductor.
I typed it out on my phone (but it wouldn't all fit on the screen at the same time) and then remembered my little communication booklets.

I have two, a basic one from the NAS  which just says the bare bones: 'this person has autism'
(which at some point I may have to artistically alter to say 'is autistic') and one that I've made myself which says different phrases etc that I can select and show someone.
Having these on me always makes me feel better because I know that at the absolute worst I can throw them (possibly literally) at someone if I'm unable to coherently use verbal words. So I'm never going to be completely stuck as long as I have those booklets.

As it happened by the time the conductor reached me I was feeling a bit better and did manage to speak to him, although it came out slow and stumbly, but I also showed him my NAS card and explained I wasn't great about unexpected change and was expecting to be by the window, and was also really stressed about my luggage falling out of the train and that I didn't want to be seated too far from it, wherever it ended up being stored.
The conductor was lovely. He beetled off and found a seat in another carriage then came back and helped me lug all my stuff through so I could sit by the window, with my luggage in a carriage that didn't have nearly as many people in. He was a little concerned that the seat was still facing backwards and said he could probably have a look and find a forward-facing one, but I said I was fine and thanked him.

Now what does this have to do with activism exactly? Cos it's not an obvious example is it?
Well the fact that I was open about being autistic when explaining my needs, that's activism. I could have just said I had nowhere to sit, or did he know of anywhere to sit. But I didn't because I wanted to explain who I was and why I was feeling stuck.

For me it's important to be as open as I can be about who I am and what my identities are and what my strengths and struggles are. Because not everyone has that luxury of being open, but I do, so I take the opportunities to be open about it in situations where it's relevant. It matters that the guard knew he was talking to an adult autistic person travelling alone and that he knew I struggled with unexpected changes. It mattered that he responded in a respectful and helpful way. It mattered because the more these honest, straight forward interactions take place, the more people get used to hearing 'i'm autistic, could you please give me a hand with xyz' or 'I'm autistic, I'm an artist, hello!' etc etc, the more normalised it becomes. The more people get used to seeing and hearing interactions that involve people being honest and open, the more they have those interactions themselves, the more normalised it becomes and the less mysterious and alien we are to them.
Yeh they should be educating themselves because it's not always down to us to educate, but people often learn best when they experience things first hand, so those interactions: they matter big time.

It matters because I was able to tell him he was doing the right things being helpful, it matters because he helped me, it matters that I was able to ask for help and to do so using a visual prompt instead of just verbal speech. It matters that I then sat for the rest of the journey with my fidget cube and cuddly bunny.

It matters, because when society tells you that you have to be a certain way and that way isn't who you are or what you need, then being yourself, openly, honestly and completely un-apologetically is two fingers up to those who think you shouldn't be seen or heard.

If I'd been able to see or hear about more autistic people being openly and honestly themselves, when I was younger, well I would have felt a lot better about being me.

It matters because the more we are openly ourselves, when we can be, the more people will stop getting all freaked out about the 26 year old with the fluffy bunny toy and the bobble hat on, and the more they will find nothing odd about that at all. And that will make things easier for the next generation of little autistic folks to come along.

It's not much and it's not massively radical or huge or loud and it's really not that impressive. But when you haven't got the spoons to do anything else, sometimes just being un-apologetic about being your own autistic self is the best activism you can do. And that matters.