Anne’s twin brother has cerebral palsy. Today is National Siblings Day, and Anne is sharing her story as part of our 100 days, 100 stories campaign.
My twin brother, Jack, has cerebral palsy and can’t walk or talk. Having a disabled sibling feels completely normal, because I’ve never known anything different.
There were resources offered in school for young carers but I never felt they were applicable to me, as I’ve never felt that I go beyond the call of duty in taking care of him.
My parents, social services and carers feed, wash and change him, and I read to him and entertain him. I never felt like my childhood was unusual, and my parents always made sure that I didn’t feel left out.
Even though I feel like I’ve had the best possible experience of having a disabled brother, there were still limited examples growing up of people in the same situation.
None of my friends had disabled siblings, and although I read a couple of children’s books on the subject I didn’t feel they were reflective of my experience.
In one book I read the disabled brother died, and in another a girl was ashamed to invite friends over because of her disabled sister. The first book, while realistic, was too depressing, and the second felt dated. It had never occurred to me to feel nervous about introducing my friends to Jack. They had grown up around him and were used to him.
In both books the main characters were bullied because of their disabled siblings, but that has never happened to me. I might be more easily offended than others by certain words, but the thought of anyone specifically making fun of Jack seems absurd.
While I never felt that different from my friends, I could get really angry when I saw them fighting with their brothers and sisters.
Although I understand now that it’s completely normal, at the time I felt that they were not making the most of having an able-bodied sibling to talk to and play with.
I was jealous of them, but I was never particularly lonely or miserable because I could play with school friends or next-door neighbours. In many ways I feel that my childhood was better and richer than if I had been an only child.
Jack is healthy most of the time, and the few times he has been seriously ill I was either too young to understand or deliberately kept away from what was happening.
A different kind of family
My family often behave strangely because of Jack, and I don’t realise that we’re unusual until someone else is visiting and comments on it. We play mealtime word games to entertain him, often roping in guests and visiting relatives.
Jack has to be fed, so our lunch takes twice as long as usual so both he and the person feeding him can eat. Sometimes I’m forced to recite nursery rhymes and times tables at the dinner table for his entertainment, but if mild embarrassment in front of guests is the worst thing about my experience then I can’t really complain.
I’m uncomfortable whenever I tell people about Jack and they react with pity, because I feel like I’ve been luckier than most people in similar situations. Jack is happy and well, so the rest of us are happy too.