Conservation of Energy

Lots of people are familiar with spoon theory at this point, and it’s been really great in familiarising abled society with some of the challenges disabled people face. It’s always tricky juggling what you want to do, what you have to do, and what you can do, and it’s even trickier justifying it to yourself, sometimes.

This weekend I’ll be travelling to Swansea to take part in the Festival of Autism 2018. I’m really excited; I get to give a half-hour speech on a topic of my choice (I’ve chosen to speak on supporting autistic children) and on the Sunday I’ll be able to sell some of my bits and pieces (all proceeds, as usual, go to Little Sandbox to help them carry on their exceptional work). But it means making some decisions; decisions which are normal to me, but which don’t even occur to most.

Friday night, I’ll be travelling for almost 6 hours, taking 3 trains to arrive in Swansea. That, on its own, is a massive undertaking. So when I’m packing tomorrow, I need to pack carefully; not just the things I’ll need once I’m there, but also snacks (protein and fruit) and drinks, sufficient painkillers, anti-inflammatories, support bandages, and so forth – plus something to keep me entertained. I’ll have to make certain choices, such as, “do I take Wintergreen spray to help with increased muscle pain, even though my skin doesn’t really tolerate it?” and, “how do I pack this so I can take everything I need, but also reach everything I’ll need on the train?”

When I get in on Friday night, I’ll transfer from my wheelchair straight to the bed and sleep for as long as I can; I’ll have to remember to take my Tramadol just before the train pulls in, to maximise the amount of restful sleep I can get.

The next day, I’ll have to weigh how much time I can spend in a social situation (which, even with fellow autistic folks, is a spoonsuck) versus how rarely I get to do this sort of thing. And so on and so forth. Every moment of the day calibrated as best I can to use the limited spoons I have to their maximum capacity.

It will take me some time to recover; likely 2 or 3 weeks before I stop feeling the effects. It will be worth it; I’ve spoken to some of the organisers, I’ve looked at the way they’ve approached me and treated my disability, and I’ve written a speech that I think encompasses what I want it to say. I’m excited to go. I just want to explain for a moment how much is involved in this kind of enterprise for a disabled person.

Not because I want you to be informed, but because I want abled people to stop asking us why we do X when we can’t do Y, or why one day we could do X when we can’t do Z every day.

It’s a delicate balancing act, and we have to balance not only what we can do and what we want to do and what we have to do, but also how to do enough things we need to to survive, with how to do enough things we want to to make survival worth it. Some things are worth the push – as I said, I think this will be, and I’m sort of already hoping they’ll have me back next year. But you can’t keep pushing forever. And that’s what I’d like you to think about before you ask a disabled person why they can do X, but can’t go to work, or can’t go to work as often or for as long as you, or can’t do the same kinds of work.

We’re all doing the best we can, we’re all juggling more priorities than we have the capacity to handle. Just trust that we’re doing our best.

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