I Have Down's Syndrome - But Don't Feel Sorry For Me

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.

I had two friends, Nicola and Samantha, who'd always stick up for me. And my sisters were very protective. I remember one day a boy started kicking me. I felt really scared, but Karen shouted, "Stop or else I'll kick you." The boy looked shocked and ran off.

People could see I had Down's syndrome because of my features. My eyes are almond-shaped, my nose is small, my feet are flat and I have tiny hands. I must have been about 17 when I looked in the mirror and thought, "Is this really me?"

But I don't remember feeling bad about myself, because I thought I looked pretty and I knew I was bright. When I read about a girl in America whose parents put her through loads of operations to change her Down's syndrome features I was horrified. They thought they were making her look "normal", but the child had no say. I'd never consider plastic surgery - I'm happy with my face. Mum encouraged me to be independent by teaching me to cook and do housework. She felt it was important to give me freedom. She believed in me so I believed in me.

I left school at 18 with three CSEs and went to college to study office skills and catering. At 21, I got a clerical job at the Down's Children's Association, where I stayed for 13 years. After that I worked for Camden Society for the Mentally Handicapped, then became Development Officer for Young people First, where we ran the first national conference for people with Down's syndrome. I met my partner, Paul, at a conference for people with learning disabilities when I was 21. He's ten years older than me and has diabetes. It was love at first sight. That night there was a dinner with dancing afterwards. Paul held out his arms for me to dance with him. It was very romantic. Afterwards, he phoned and asked me out for a meal.

We've been together ever since. When we met, Paul was living with his grandmother. She was old-fashioned and didn't like her grandson having a Down's syndrome girlfriend. So Paul stayed with me at weekends. We moved in together properly in 1998. The fact that I have Down's has never been a problem for Paul. He loves me and admires my positive attitude. We both like classical music and reading Harry Potter books. He's a very soothing person. I call him my "hunny bunny".

Marriage isn't important to us because we'll be together forever. We would have liked our own family, but decided against it. There was a one in three chance our child would have Down's syndrome and it could also inherit Paul's diabetes. I wouldn't mind having a Down's syndrome baby because I'd give it all the love my mother gave me, but I'd probably find it hard to cope without help. And, financially, it would be a struggle.

Sometimes people stare at me in the street. One man on the train even called me "mongol". I thought it best to ignore him, but I felt very angry. Another time a boy laughed at me on the bus. This time I stood up in front of everyone and gave him a mouthful.

It amazes me that strangers make rude comments. Who are they to judge? Checkout assistants have asked me if I have the money to pay for the food in my basket. I just give them a stare and have been known to shout, "Excuse me?" Just because I have a disability it doesn't mean I'm stupid or penniless.

As a trustee of the Down's Syndrome Association I've given talks and have even been on TV. My message is that we can achieve a lot more than people imagine, and we deserve more respect.

My father died last year, but he lived in America and we weren't close. But when Mum died of a heart attack in 1990 it was the biggest bombshell of my life. I wanted to stay in the family home because I grew up here. Mum had prepared me for the day when I'd have to look after myself, and I hated the idea of being dependent on anybody else. People were stunned when I said, "I'm happy to live here alone." They worried I might set the place on fire. But 13 years have passed and I haven't. I have a cleaning lady, but I do the shopping, laundry and cooking. Every Sunday I do a roast - Paul chops the vegetables.

Mum's best friend was a lady called June. Since Mum died she's become a second mother to me. June's a stained-glass teacher and I asked her to show me the techniques. I love the colours of the glass. At first I made mirrors, but now I do mosaics and candle boxes, too. My picture of a mermaid was in an exhibition at the Houses of Parliament, and the MP Glenda Jackson wrote me a letter saying she really liked it. Some of my work was also shown at Ely cathedral.

I don't feel sorry for myself and I don't want anyone else to feel sorry for me, either. I enjoy my life so there's no need. I'd have liked the doctors who made those comments when I was born to see what I've achieved.

How unusual is Anya'

She was born at a time when no-one expected anything of people with Down's Syndrome,' says Sarah Waights of the Down's Syndrome Association. 'The fact that Anya's achieved such normality in her life against all the odds is an enormous tribute to her and her family.
'Nowadays, however, people have a much better understanding of what support people with Down's Syndrome need in order to fulfil their potential. So while everybody with Down's Syndrome is an individual and the degree of learning disability varies greatly from person to person, we would hope that many more babies born with the condition will be able to achieve as satisfying a life as Anya has managed to create for herself.'

This article, which first appeared in August 2003, is reprinted with the kind permission of Family Circle. The photographs credited to Family Circle were taken by Angela Nott. Article reviewed in 2019, content continues to be relevant.