I Have Down’s Syndrome – But Don’t Feel Sorry For Me

How unusual is Anya? “The fact that Anya has achieved such normality in her life against all the odds is an enormous tribute to her and her family.”

Anya Souza

Finding out you’re carrying a baby with a condition such as Down’s syndrome can be a devastating blow. But what’s it like to be born with it? Here, in her own words, one woman explains why such a diagnosis is far from the end of the world.

Anya Souza, 40, lives with her long-term partner, Paul, 50, in North London. She works as a stained-glass artist and is a trustee of the Down’s Syndrome Association.

My mother was 44 when she had me and I’ve got two big sisters as well. Mum was an actress and Dad a well-known Indian artist. They separated when I was two. Mum raised us on her own, which must have been hard.

Back in the Sixties people didn’t talk much about Down’s syndrome, and amniocentesis wasn’t available. Mum didn’t talk to me about it as I was growing up, but later she told me that, when I was born, the doctors said I’d be mentally and physically handicapped for the rest of my life – as if I wouldn’t be able to do anything for myself. But a nurse came in a few minutes later and said, “Don’t listen to them, Mrs Souza. Your daughter will give you great pleasure.” That part was true. Mum was always hugging me and telling me she loved me, and I know I made her proud.

 

 

At five I was sent to a special school, but only stayed a term. One day our teacher made a brown stuffed rabbit and told me to take it home to show Mum. I ripped it up because I felt cross that I hadn’t been given the chance to make it myself like the other kids. As time went by, Mum realised I wasn’t being helped to learn anything. The last straw was when she overheard the head teacher asking what a “mongol” was doing in her school.

Mum went to court to get me into a mainstream school, where I stayed six years. It’s different now, but back then, if you had Down’s syndrome, you were expected to go to special school, however capable you were, and parents had to put up a fight if they disagreed. I loved the new school.

At the age of 11, I went to the same comprehensive as my sisters, Karen and Francesca, and had my first experience of bullying. An older boy pushed me over in the playground, crushing my fingers so badly I had to go to hospital. Another time I was spat at and someone poured hot custard over my head. I was disgusted at the way some children and even a few teachers reacted to me because I was different.

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