The tent was incredibly hot when I woke up and although it was early I could feel the heat of the sun through the synthetic fabric. I opened the flaps to let in a much-needed breeze and the daylight flooded in too.
Fat Sister and Fran slept on next to me. I could hear Captain Hotknives strumming his guitar gently next door. After a few moments I wriggled out of my sleeping bag and got out into the open air.
Yesterday’s rain had completely cleared and the early sunshine had already dried the grass. I took the opportunity to clean up my wheelchair. It was incredibly satisfying to see the wheels emerge from their caking of mud.
Slowly but surely the rest of our crew appeared, gradually waking and pulling themselves out into the daylight. After I’d finished with the chair it was time to get myself clean. The manager of Theatre and Circus area had organised an accessible shower for me. Because I was the only person who needed it, I had it all to myself, which felt like the height of luxury. It was the same shower as last year and I love it because the top’s open to the sky. This meant I had a beautiful warm wash with the sun’s rays bathing me as much as the clean water.
Clean and ready to go after another wonderful cooked breakfast, we headed off into the main site. Much to my relief the ground had already dried and the mud of the night before was vanishing fast.
We headed to some parts of the festival we hadn’t yet explored. At the Greenfields we found the brilliant Stay Up Late Crew who were offering funk or punk makeovers. Stay Up Late promotes full and active social lives for people with learning disabilities. They’re a great organisation who believe that fun shouldn’t stop when carers clock off.
They pimped my chair and made an amazing ‘Who the funk voted Tory?’ t-shirt for Captain Hotknives.
After a cool drink on the grass we headed to the Sensation Seekers stage for a pre-show picnic and practice. Captain Hotknives and I came up with a new song to the tune of ‘He’s got the whole world in his hands’ about the closure of the Independent Living Fund and the threats to Access to Work. The first verse goes:
“There’s a police officer on my chair,
There’s a police officer on my chair,
There’s a police officer on my chair.
Just because I don’t want to go and live in residential care.”
We dedicated the song to the protestors who’d lobbied parliament on Wednesday and made no apologies for having a more political set this year – we definitely weren’t the only ones.
After the performances we lolled about in the evening sun and had some dinner before heading to the Pyramid Stage for Kanye West. Leftwing Idiot and Poppy are huge fans and have spent whole days watching his interviews. I’m quite into some stuff he’s done in the past and was keen to catch his performance. But I struggled, not because I thought he was good or bad, but because of how frequently he used a racially offensive word I don’t ever want to use or repeat.
Tourettes means that anything I’ve ever heard can come out as a tic at any time. Most of the time I take a laid-back attitude to this, but there are a few words that have the potential to be so hurtful as tics I try very hard not to hear them.
I’m also Echolalic and often automatically repeat back other people’s words. I couldn’t concentrate on Kanye’s performance because I was repeating the language he was using and finding it distressing. I stuck it out for a few songs but in the end it felt better for us all to go and have a dance somewhere else.
At the Blues we danced for ages, and it was excellent. We were all completely oblivious to the growing crowds around us until we tried to leave to see something else. It quickly became clear that getting out safely was going to be a very slow process. This was the only time at this year’s festival that I felt vulnerable.
To deal with it we developed a system similar to car headlights: I shone a light at the oncoming crowd and one of my support workers shone a light on me. This was definitely more effective than Olive’s system last year which was for her to walk ahead of me with her arms spread wide. It worked a bit, but we were frequently slowed down by all the hugs she got from strangers!
When we’d got out I could feel my body starting to struggle. When I’m tired, or if I’ve had any alcohol, my motor tics almost always intensify. And I wasn’t the only one who was worn out, so we headed back to the tents just as a light drizzle began to fall and I had to put on my waterproof trousers and cagoule.
En route I started to have a ‘ticcing fit’ but we were soon back at our camp and Will and Lottie quickly got me out of my chair and into the safety of the big tent. My body was super locked up, my muscles in an unforgiving painful spasm. Lottie pulled me into a sitting position between her legs, and gently teased me for wearing a cagoule – not the easiest item of clothing to remove when you’ve got no independent movement. Despite the pain I felt very safe and secure.
The fit was a long one and Lottie and Will took turns to support me while the other got ready for bed. I was lying in the tent, with Will holding my body in a safe position. The tent flaps were folded back revealing a huge sky alive with lights form the various stages. My tics were very taken with these, frequently commenting on how much more impressive they were than my dear lamp-post. It was a rough fit but the view was amazing and I was supported flawlessly. It was nice knowing that once it’d finished there was nothing more for me to do but sleep.