Devoted, Disgruntled, Invigorated

In January 2014 I was having a tough time. I’d recently developed dystonia in my hands, which made it hard for me to use them. I had to learn to do things in new ways, like pulling my trousers up or learning how to open a tampon with my teeth.

Just before this happened I’d planned with Chopin to attend an event called Devoted and Disgruntled (D&D). Chopin and I were making a show together and this was a chance to attend an event dedicated to conversations about theatre. I had no idea what to expect – I knew nothing about the performance world and it was all nerve-racking but exciting.

Sadly, I never got to this D&D. I got a call the evening before to say the lift was broken and so there was no wheelchair access. The following year Chopin and I did get to go, and together we hosted a conversation about access and relaxed performance.

I’m telling you all this because it’s D&D13 this weekend, and once again it coincides with changes in my body, and support requirements that I’m adjusting to. This time it’s the chronic pain, sickness and fatigue that have been increasing over the last year.

Yesterday I was unable to get out of bed at all. I spent the day resting and enviously reading tweets about D&D. I felt a bit gloomy about not being there, and let down by my body, which is something I don’t often feel.

However the outcome of a day in bed was that I had a little less pain and a little more energy this morning. So I decided to do the sensible thing and rest some more… Actually I didn’t do that at all: I decided immediately to spend my saved energy on an afternoon at D&D. And I’m very glad I did.

I hung out with a load of lovely people, took part in some energising, urgent and thought-provoking conversations, and got to experience the amazing job D&D’s organisers have done to improve access.

Four years ago there wasn’t a working lift but this year’s venue had several. There was also a stim space and a quiet space, a changing places toilet, audio beacons, a tactile map, captioning, support workers on hand and eight British Sign Language interpreters. It was amazing to see this change and to experience such well-thought-out access.

I might have been able to manage only a few hours at D&D but connecting with new ideas and people and spending time with old friends in a creative space felt like a good use of my carefully saved energy.

Now, though, I’m back in bed, physically tired but creatively invigorated.

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