Lisa’s story shows how she, as a young disabled person, exercised the rights described in the Rights Awareness section of the Supporting Disabled Children, Young People and their families guidance to make a big life decision – something that’s had a really positive impact on her life.
Hi, my name is Lisa.
I have a rare and complicated condition where my brain is malformed and causes severe seizures and a learning difficulty. I also have a facial disfigurement and have had many complicated and big operations. One time, when we were planning another very big and complicated operation to my jaw and face, my mum said to me:
“You trust me, don’t you?” and I said: “Of course, you are my mum!” Then she said: “Do you trust Mr R?” (Mr R is my surgeon). I answered: “Yes, I do. He has known me all my life and I like him”. After that my mum asked me: “Your next operation is going to be really big and complicated. It might all be a bit difficult for you to understand. Why don’t I discuss it with Mr R and he and I can decide what the best way forward is for you?”
I was horrified. All I could say was: “But it is my face!!!” I know that my mum and Mr R always think of what’s best for me, but I really didn’t like for them to make decisions about me and my operations without me. So, after that Mr R explained all the possible options to me and I talked it over with my mum and dad many times. I also spoke to a psychologist about it.
I think they all wanted to make sure that I didn’t have the wrong ideas or expected too much. They also wanted me know that there might be risks and that it might not turn out the way I hoped.
When I finally had the operation, I was 14 years old. Mr R gave me a sheet before the operation and said: “You understand everything that’s going to happen, therefore I think you could sign this consent form yourself.” I had to ask him what “consent” meant. He explained that it meant I gave him permission to do this operation and that I fully understood what he was going to do and what could go wrong.
It made me feel very grown up and I felt that I had made my own decision about my health and my face. I was very proud of how I coped with it all.