Rock Stars

This time last month I went to Glastonbury. I was there for four amazing days, but the time seemed to go really quickly. So when, just over 38 hours ago, I headed off to another festival – Camp Bestival – and because I was only going be there for a night and a day, I had low expectations of what I’d manage to fit in. The plan was to arrive, perform and leave – just like a rock star. But I actually managed to cram a lot in – here’s how the last day and a half have unfolded – hour by hour.


11.00am – Fin, a friend of Jolie’s, arrived just before 11am. He drove us to and from Camp Bestival in his roomy red van. I’d packed light, but there was enough space to take some luxuries too, like three giant outdoor beanbags. Bunny, Jolie and I climbed in and we headed off.

12.00pm – We stopped to pick up snacks from a supermarket. Usually on long journeys I stay in the car because my chair’s been dismantled and packed away, but there was so much space in the van it stayed assembled and usable. So I was able to get fully involved in selecting snacks for the road and booze for the festival.

1.00pm – As we made our way along the motorway, my tics were talking about all the diffrernet festivals we were going to:

“Camp Bears-tival”
“The Pocahontas Cheesecake Festival”
“Camp Brisket”
“The Wormery Festival”

2.00pm – The view from the van’s window was glorious, all sunshine and rolling countryside. My grandparents used to live in Dorset and it’s been a long time since I’ve driven through the county’s glorious heathland and pine forests and it made me feel quite nostalgic.

3.00pm – We drove onto the site, it was already busy but there were no queues.

4.00pm – We were shown to the accessible campsite, which was huge! We chose our spot and set up camp. This was the first outing for my new tent (my previous one hadn’t survived Glastonbury). The new one’s great – big, easy to put up, and it has a porch where I can put my wheelchair at night.

5.00pm – Once we’d settled we headed off to the artist area to get our wristbands. Finding where to go was tricky and none of the stewards seemed very sure either.

In the process of trying to find the right place I asked a security guard if I could use a particular entrance and he said yes. But when Bunny, Jolie and Fin followed he shouted at us saying, “You lot are ridiculous”, seemingly wanting them to go round by a longer route. Bunny went to talk to him and explain that I needed support but he walked away, refusing to listen to her. This experience added to our frustration, and it was completely unnecessary. Eventually we found the right place and after a bit of waiting we were all signed in, and ready to explore.

6.00pm – The festival is held in the grounds of Lulworth Castle and is surrounded by magnificent hills.

7.00pm – We headed to one of the main fields where there were lots of flags billowing in the breeze. The stream of colour against the cloudless blue sky was stunning.

8.00pm – Camp Bestival is a family festival. It’s more than just family-friendly, because it’s geared up to the needs and interests of both children and adults.

9.00pm – We sat on the warm ground and had some dinner as dusk crept in.

10.00pm – We found an area called Caravanserai, a ramshackle collection of vintage caravans and fair rides that’d been turned into a lovely bar. There was music playing and it had a distinctly welcoming vibe.

11.00pm – This was just the first night and the Festival hadn’t opened properly yet, so, taking a tip from a child we’d met earlier in the evening, we had a hot chocolate before heading back to the tent.


Midnight – The moon looked beautiful, almost full, in a clear sky. As we got ready for bed Bunny said “Look at my moon” and then laughed and corrected herself, “Our moon.”

1.00am – 8.00am – A long and satisfying sleep.

8.00am – I woke to the tent filling with warm light. Jolie and Bunny slept on.

9.00am – After slowly waking up, I pulled myself out of the tent and onto the warm grass outside. The dew had already dried and I sat enjoying the buzz of the campsite. I was struck by how many disabled children there were – it felt really friendly and inclusive.

10.00am – Bunny and Jolie joined me and after lounging about for a bit we packed up the tent, spurred on by the promise of breakfast.

11.00am – With the van packed we headed out into the festival to find food, juice and entertainment.

12.00pm – After breakfast we explored, gradually getting our bearings and looking out for interesting places to sit and soak up the atmosphere (and the sun).

1.00pm – As we wandered we came across a huge, hairy figure, the subject of lots of my tics.

2.00pm – After all that sunshine we felt pretty frazzled so we went in search of shade and refreshments. We sat in the dappled light under a tree with Jolie and Bunny using my wheelchair’s footplate as a makeshift bar.

3.00pm – I was due to be interviewed in The Guardian’s Literary Tent at 4pm. Writer Suzanne Moore was being interviewed before me by poet Hollie McNish on ‘How to be a Feminist’, and we went in a bit early to catch this. It was good to see how popular this session was and to hear the thoughtful questions and insightful comments from girls and young women in the audience.

4.00pm – I was up next with the very lovely Jack Rooke interviewing me. He asked great questions and the time flew by. I found myself talking about the policies of the current Government more than I’d planned to, but I make no apologies for this. Sitting on stage I felt hugely aware of both the privilege of talking to the audience, and of the fact that I was only able to do it because of the support I receive from Access to Work and from my Local Authority.

It would feel very wrong to talk about Touretteshero and all that we’ve achieved without also talking about how different my life, career and opportunities would be without this crucial support.

5.00pm – After the interview we headed back to where we’d eaten the night before and had another delicious dinner on the hill. While contemplating the amazing countryside around us we decided to head straight off after we’d eaten to give us time to get to the legendary Lulworth Cove, before heading back to London.

6.00pm – We left driving through the colourful Festival on the way out.

7.00pm – We drove into the car park at Lulworth Cove. The evening was warm and the salty scent of the sea was heavy in the air. Fin ran along next to me as I freewheeled excitedly down the hill towards the beach.

The cove is breathtakingly beautiful! I’ve read about it before but never been there. The semi-circle of cliffs stretched up towards a brilliantly blue sky. The water was still and clear and the tide was high, leaving a sliver of pebbly beach all the way round its fringe. Beyond the mouth of the cove the sea stretched out in front of us.

I was out of my chair very quickly, kicking off my shoes and rolling up my leggings. I shuffled down a small flight of steps onto the beach. Bunny lifted my chair down and pushed it along the stones with me crawling along next to her, holding onto the chair for balance.

We reached a patch of sun and noticed two girls and their mum in the sea a little further along. Bunny, Jolie and I looked at each other and without a word we started stripping off so we could swim.

The water was cold but I felt totally calm as I let myself slide in, my knees cushioned by the grainy sand. I could taste the salty water as it splashed onto my face. I love swimming, particularly in wild places, but I haven’t been in the sea since Cornwall a couple of years ago.

I swam my way back along the beach, which was far easier than crawling. Fin walked next to me – keeping me safe. I clambered out when we reached the other end, and got back in my chair, cold, wet and incredibly happy. This was a perfect end to our brief time in Dorset and left me keen to come back soon.

8.00pm – Back in the van we dried off and changed for the journey home.

9.00pm – Bunny and I found the perfect sleeping position – lying on each other in the back of the van. Bunny even tucked my hands under her body so I could be still(ish). We drifted off to sleep.

10.00pm – After our snooze we were fully awake again. We popped some tunes on using Jolie’s phone. She took my tic request for tracks about cats very seriously and we listened to song after song from the musical Cats.

11.00pm – The sky outside was vast, clear and dark, and the moon mesmerizingly beautiful.


Midnight – By the time my last medication alarm of the day went off we were back at the Castle. When we were ready for bed, Bunny helped me into mine and then sank into hers.

It was a full and amazing 38 hours and I enjoyed every minute of it.

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