I worry about my BROTHER'S FUTURE'

Author Claire McGowan on growing up with her disabled brother, David

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Even as a young child, I knew my family was different. When we went out, people would gape at us – not just children,

but adults too, who should have known better. They were staring at David, my brother, who was born with a very rare chromosomal disorder and has profound disabilities. Not only does he look different, he also shouts a lot, drawing attention. It made me angry when people stared, and defensive of him. Secretly, I also felt frustrated – we couldn’t often do normal things as a family, like travel or go to the cinema. It was terrifying too, as David had seizures where he’d stop breathing. And, of course, it was very sad to know he would never get better.

When my brother was born, I was nearly two. His condition came as a total shock. My parents, in their 20s, were told their baby was either going to die within days or need lifelong, round-the-clock care.

As this was Northern Ireland in the 80s, and we were a Catholic family, they were expected to just get on with things, and even be grateful. Mum remembers a nun coming to see her in hospital, while she was still reeling from the news, and saying how lucky she was that God had chosen her for this blessing. That was something I’d hear often at the Catholic schools I attended. We were even advised to take David somewhere like Lourdes for a ‘cure’, even though there is no cure for a condition like this. Even as a child, I hated that kind of thinking. This may be in large part why I’ve turned away from religion as an adult.