Today was the last day of Shambala Festival 2013. Shambala’s a creative, family-friendly festival that takes place near Market Harborough, and for the last three days it’s been my home.

Although this is only the second year I’ve been I feel I know it well. I’ve been hearing about it for many years and lots of my friends are involved, organising, performing or just attending. Leftwing Idiot’s been going for years and I remember how excited he was after the first time he’d been. Now I know why.

To help describe my amazing weekend I’ve drawn a map showing the site and where some of the events took place that made the last few days fun, funny and memorable.

1. Accessible Camping
We arrived on Thursday afternoon and drove straight to the Accessible Camping Area (ACA), a space set up with disabled people in mind. It was flat and had plenty of room for wheelchairs to move about with ease. There were accessible toilets, an accessible shower, a charging tent for electric wheelchairs – and a wonderful team who made sure accessibility had been thought about right across the whole site. The team was full of familiar faces, including Lisa who I met last year and my amazing friends Bunny, Fran and Sophie. They did an incredible job making sure everyone felt welcome and well provided for.

2. Base Camp, Rehearsal Space, Lolling Zone
I shared a tent with Zoë and Poppy who were supporting me along with Claire, who had a separate tent next door. Fat Sister, King Russell and Captain Hot Knives AKA Chris were also camping with us. Chris and I performed together properly this year after the success of our impromptu slot last year. Shambala was full of other people I knew too, which helped me feel safe and relaxed. Our group of tents was much more than just a place to sleep. It was also a sunbathing spot, a rehearsal space, a nail bar, and a hub of activity and laughter.

3. Showering Inspiration
This morning I had a shower, supported by Zoë. The accessible cubicle had a ramp, and there was room for us both to be in there together so she could help me if necessary. I showered first and then she did. She was worried about me having a ‘ticcing fit’ while she was washing so she said, “Can you just keep singing so I know you’re still alive?”

My tics happily obliged with the catchy ditty “I’m Not Even Dead Yet” which went like this:

“I’m not even dead yet, I’m not even dead.
I’m not dead yet and Zoë still has a job”.

For extra pizazz this went to the tune of ‘A Whole New World’ from the film Aladdin. Later on Chris and I worked the song into our act and a tent’s-worth of festival-goers blasted it out in unison just a few hours after it’d emerged in the shower.

4. Dancing at the Roots Yard
I’ve written a lot about how important having a chance to dance is to me. Last year at Shambala I didn’t get to do as much as I’d have liked. It was hard to get into lots of the dance tents at night because they were so busy. When I mentioned this to my friend Keir who was helping out at the Roots Yard tent, hosted by the Friendly Fire Family and another friend, Robin, they were happy for me to come in through the back of the tent. This meant I didn’t have to battle to get my wheelchair through the crowds so I could have a good dance at the front. It also meant I could get out quickly if I had a ‘fit’. I felt safe and happy in this space and spent several hours dancing and soaking up the bass.

5. A View from the Platform and a View from the Floor
The main stage hosted loads of amazing acts and I had an excellent view thanks to the viewing platform. This was a raised area with a ramp organised by the ACA team and it meant I could see the stage, rather than the backs of the people in front of me.

It also meant that if I had a fit I’d be in a safe, controlled area rather than at risk of being trampled on. Last night while we were watching Amadou & Mariam I did have a fit. The stewards were great and didn’t panic. Poppy, Fat Sister and King Russell helped me onto the ground. The fit went on for quite a long time and even when I thought it had pretty much finished I still couldn’t move the left side of my body properly. I got back in my wheelchair and carried on watching the performance, but the pain in my locked-up left side got worse so Poppy, Claire and I went off in search of somewhere quieter.

6. Safely Back in Roots Yard
By the time we left the viewing platform I was in agony and desperate to find somewhere where I could be out of my wheelchair and able stretch out my twisted body. We headed for the safety of the back of the Roots Yard. I’d already used this space when I’d been fitting before so we knew it was quiet and friendly. I was so relieved to get onto the ground, even though it was a bit wet.

I took some of my emergency medication, which relaxed my muscles enough for us to get back to the ACA and the peace of our tent. After two and a half hours of fitting my body eventually loosened up and my left side came back online.

7. And Poppy Kept Taking Me to the Toilets
The ACA team had done a good job to ensure that the accessible toilets were in sensible locations, kept clean and locked with Radar locks which meant they could only be used by people who had the key.

This was particularly important for me because regular medication I take means I need the loo much more often than most people. At one point when Poppy was supporting me it got so ridiculous that by the time we got back from a trip to the toilet I’d need to go again.

Poppy put up with this patiently but my tics placed all the blame on her. As she wheeled me to the toilet for the umpteenth time I shouted “Stop taking me to the toilet, Poppy” and “Poppy’s locking me in the toilet again!”

8. Pirates V Gangsters
When we arrived on site on Thursday afternoon Poppy opened the boot of King Russell’s car and a collection of Super Soakers fell out. She exclaimed ‘Oh Russell! So that’s why we’ve all been so squashed’, but she certainly seemed to have understood the reason for the aquatic armoury by Friday afternoon when she was instructing a ten-year-old girl in a pink wig to use one to drench Keir during the Pirates V Gangsters flash mob.

Loads of people dressed as pirates had gathered at the Flying Dutchman stage, and another big group dressed as gangsters had congregated at the Speakeasy. The gangsters had foam pies and the pirates had water balloons. All I had to do was cling to Zoë as hundreds of water bombs and foam cakes flew through the air. It was thrilling and terrifying at the same time.

9. Access All Areas
I mentioned earlier how tricky it’d been getting into any of the big dance venues last year. As a result the ACA team had set about finding a solution for this year. They’d negotiated with the team running the largest dance tent – The Kamikaze – for disabled festival-goers to go in through the backstage area – a simple solution for everyone.

I tried this out for the ACA team before they let other guests know about it and it went very smoothly. The Kamikaze crew were helpful and friendly and I was really pleased I didn’t have to spend another year longing to go and party inside with my friends, but not being able to get in.

10. Finding Keir Under a Tree
Randomly bumping into friends or discovering new acts, and groups is one of the things that makes Shambala special. Lots of lovely people kept popping up throughout the weekend. I particularly enjoyed it when Keir and his girlfriend Laura called to me from under a tree, and I hung out with them while they sold amazing laser-cut Shambala specs that Keir had made.

11. The Support Worker Sobriety Test
A team of five people helped support me over the weekend. Poppy, Zoë and Claire were my main support workers, and Fat Sister and King Russell did some shifts as well. I split each day into morning (8am-3pm), evening (3pm-10pm) and night (10pm-8am), making sure that everyone got at least one night off to party without an early start in the morning.

A sure-fire way of finding out how sober any of them were was to see how they tackled the walkway from the tents to the main festival site. Tired or tipsy, and they found it very hard to negotiate. Sober, and it was no problem.

12. Enjoying Words with Bunny (Again)
Last year I wrote with joy about seeing Kate Tempest in the Wandering Word tent with Bunny. This year we made time to catch a bit more poetry together and I was pleased we did. It’s a lovely space and like last year I was made very welcome.

13. Captured by Hotknives
On our way to perform at the Social Club, Captain Hotknives came up with a new song that quickly made it into our show. It was inspired by my ‘Help, I’m being kidnapped’ tic. The spontaneous song started with the line ‘I’m abducting a disabled woman again’ and continued in a similar vein. He sang it as we made our way to the venue and I ticced “Help!” continuously as some sort of bizarre backing vocal. But Shambala’s so full of unusual sights that no one batted an eyelid.

14. A Warm Welcome at the Social Club
Captain Hotknives and I played at the Social Club yesterday and again this afternoon. The tent was full on both occasions and it was particularly busy today. The show consisted of improvised songs, tic-inspired games and easy-going audience participation.

Photo by: Annabelle Holland

Today’s show felt better because we’d had a chance to get into the swing of things and develop ideas. These included:

• Asking the audience to pose as a sexy cat every time I ticced “Cat sex pyjamas”
• Singing a song about what to do in the event of a seizure
• Teaching the audience some ticced songs. I loved hearing “I’m having sex with animals again” sung by hundreds of people
• ‘Tics In Their Eyes’, a segment where audience members could improvise their own tics
• An echolalic wave – like a Mexican wave but with ‘Biscuits’
• A tic-enhanced version of ‘If you’re happy and you know it …’
• Free biscuits, both ticced and baked (During the first show someone backstage had the brilliant idea of handing out biscuits. I loved this, and we did it again today.)

I loved performing with Captain Hotknives again – it was chaotic, exciting and funny. I was also really pleased that Rosie, a friend who’s a British Sign Language interpreter, was able to sign both shows for us.

Photo by: Zoë Kinross

At the end of today’s performance I had a ticcing fit. I didn’t lose my speech but I did lose control over one side of my body. I tried to ignore it but soon realised it might get much worse at any moment. Claire, who was supporting me, was standing behind me and couldn’t see what was happening so in the end I decided to announce the fit over the mic.

I’ve always worried about having a fit on stage but it turned out to be perfectly manageable so I’m less worried about it happening again in future.

Thanks to everyone at the Social Club for helping create a wonderful, supportive and enthusiastic atmosphere.

15. The Woods of Doom
The Woods are always full of amazing art installations and enchanting spaces, but when I went to have a look last year it was a struggle to get round in a wheelchair.

I decided to try again this year – it didn’t go brilliantly. I had quite a bad fit while we were there and lots of people around us panicked and rushed off to get medics and security. Fat Sister was quick to reassure everyone and tell them not to worry. My ‘No ambulance please’ sign came in handy.

The seatbelt on my party chair snapped during the fit as a result of my thrashing about so we had to go back to the ACA to fix it. But that wasn’t easy because we had to make our way out the same way we’d come in, against the flow of revellers heading into the woods to party. Eventually we made it out and in no time at all I had a new seatbelt thanks to a couple of cable ties and one of King Russell’s belts.

16. A Peaceful Place
The woods might have been hectic but there were plenty of calm places too. One of my favourite places to sit was by the lake and on Saturday afternoon I got to hang out there for a bit with Dylan and his parents. They’d been able to get last-minute tickets for Shambala and I was really pleased they’d been able to make it.

17. The Burning, Ahhhh!
The ACA team did an amazing job sorting out access and viewing areas right across the site, and for the first time they’d been able to organise a viewing area for this evening’s ‘Big Burn.’ That’s an accurate description of what happens – each year something massive is built out of wood and on the last night it’s sent on fire.

The accessible viewing area was right at the front and down-wind of the fire, which meant all the sparks and hot ash fell on us and on nearby tents.

The Fire Brigade who were overseeing proceedings sprayed water from the lake over the whole area – tents and people. It was quite dramatic but a bit scary, especially because everywhere past the viewing area was extremely crowded, making it impossible to move away quickly.

My tics helpfully reminded everyone, “You’re not allowed to burn disabled people anymore.”

It’ll need a bit of tweaking next year for sure.

18. Zoe’s Special Task
Sleeping away from home meant one of my usual nighttime routines was disrupted – there was no lamp-post to shout at. Fortunately there was a floodlight nearby which made a good stand in.

“Night-night, floodlight.”
“Calm down floodlight, it’s only a drunken mob.”

Lots of other lights around the site caught my tics’ attention and on the first night they even instructed Zoë to go and count them all. She refused, insisting it wasn’t in her job description. It’s definitely time for that to be reviewed.

Thanks to everyone who helped make this a wonderful and memorable weekend, especially to my party chair and the team of brilliant wheelchair pushers who all made it safely through the weekend with only minimal damage.

I hope to see everyone again next year for more Shambala shenanigans.