Stopping Caring

In her regular column for Able magazine, Jane Muir shares her ongoing experiences of life with – and without – her disabled son.

2010 started out with the week’s dance course we had fundraised for Alistair to go to at the Orpheus Centre in Surrey, which runs short and long courses in the performing arts for young disabled people. This turned out to be fantastic. Alistair, who has always been interested in the arts and music, had never really felt confident about performing in front of an audience, but the ‘Sensations’ dance workshop culminated in a show with a thirty strong cast in front of family and friends, with a stage, lighting, sound effects, and an interactive background film screen. To my immense relief, Alistair enjoyed every minute, as you can read from his own report below…

Returning to his residential college was another matter, and the snow meant a second week off, mainly spent in bed with a cold. Luckily, his holiday morning carer, Agnes, was able to come to the rescue, and we staggered on, somehow, until the weather and the cold cleared up. We even managed to get something called a Carer’s Replacement Grant – don’t know what that means, but we were pleased to have it!

The big question now, of course, is whether wonderful places like the Orpheus Centre will be affected by coming spending cuts. We can only hope that the powers that be understand how very valuable creative education is for young people, and that channelling learning funding only towards employability excludes many young, disabled adults who benefit as much as anyone from being active, creative and engaged.

Here is what Alistair wrote, tidied up. Able magazine readers who are interested in finding out more about the Orpheus Centre, founded by the musician Richard Stilgoe, should call 01883 744664, email enquiries@orpheus.org.uk This e-mail address is being protected from spambots. You need JavaScript enabled to view it or visit www.orpheus.org.uk.

Read on!

“We went to the Orpheus Centre for a dance course. We found our bedroom first. It was very big with a big window and a bathroom. On the first Sunday evening we sat on the sofa to watch TV. Mum unpacked our things.

“We saw the dining room. We had a lovely meal, and after dinner we sat on the sofa in the living room and we met the other people who were doing the course. I went everywhere on my own. I like the way the building was made. That man Richard Stilgoe did so well, to make it easy for people to drive their powerchairs everywhere.

“Mum stayed in the bedroom and she said ‘I am here when you want!’ I said: ‘Ok, don’t go to sleep or I will shout wake up!’

“There was a beautiful girl called Lizzie who danced with me. I really liked her. She kept saying a good word that goes like ‘A-righ?’

“I could open the bedroom door with a cool magic key. I just passed the key and it opened!

“Every morning, I went to the canteen on my own to have breakfast. Then I went to my dance course on my own in the barn. The barn felt like a dark tunnel. I felt there should be trains coming in on a platform.

“The dance was about mobile phones. They did a weird phone dance that I know really well now. The way to remember it was to think: ‘waiting and cleaning windows phone rings and private talking’. The music was really good and quiet.

“Dancing is a big thing and it was a proper dance group because everyone came to watch. People moved their bodies and their hands to the music. I drove my powerchair under people and around and around and it was really cool. It was a bit weird because I have never done that before and it was difficult to do some things with my left hand. We even went out in the snow for some dances. It was very, very cold. The dance teacher had a smiley face and she did so well. Incredible that she taught everyone the dance. And we all sang ‘Orpheus Centre rock and roll!’

“I would like to do another course for three years after I finish college if I can have a grant. Every morning I woke up and watched the snow falling and the trees. By the end I was tearful, but I will keep in touch with everyone on facebook.”