Social care and disability - then and now
It was very different back then. There were no expectations that I would work or live independently and it didn't cross my mind.
When I was eight, mum brought me to London. A GP saw me and they made a referral to Queen Mary's Hospital. I saw the specialist and he said he could help me and they could operate on my legs. At the time they were very bent and I couldn't sit up properly. I went in the hospital the following week and I was there three and a half years.
The ward sister was great. She treated children like they were her family, and she did such wonderful stuff. She made sure that on birthdays we had a party. When I had my operation and was having physio she used to take me out sometimes to the seaside.
She realised that a lot of the children wouldn't have normal childhood experiences, so we would get taken out to the cinema or to ballet. My mum was always very committed to me, but a lot of the parents weren't. They were told to forget about their disabled children and go off and have more babies.
When I was 11 my mother started getting worried because she thought my education was suffering in the hospital. I went to a school down in Sussex. I was there for two years. It was horrible - everything my hospital experience was not. It was kind of rough and tumble. They didn't treat you as though you were disabled. If you fell over you were picked up and you had to get on with it. At the time I didn't like it but now, looking back, I'm glad I went. I think it gave me the impetus to get on and try stuff. I went to a couple of other schools after that but I got fed up of school. I left when I was 16 and went for a short time to the school of stitchery because it was thought that I might be able to manage that, but I couldn't. I was only there for three months.
It was very different back then. There were no expectations that I would work or live independently and it didn't cross my mind. I had nothing to focus on in that respect. Nobody had done it.
My best experience of care
When I was getting 24 hour care it enabled me to live the same way that non-disabled people do. I don't like putting it this way, but my carers were like my arms and legs. So I could do things when I wanted. They relieved me of my disability. I'm very slow at doing things and when I do things it takes a lot of energy. If I drop something now it stays on the floor until the next person comes. But when I had 24 hour care, I was living as an equal to anyone that's not disabled. I could go out when I wanted to, I could eat when I wanted to, I could have my personal care when I wanted it.
I could prepare a meal, invite friends round and they didn't have to get involved with anything. They just saw me as me and not some disabled person. My support workers enabled me to do all those things.
But now the carers are only there to do the things they're down to do, in the allotted time.
