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Anya Souza

The Goan Connection: Daughter of late Francis Newton Souza, Goa’s foremost artist. SEE: and among many others. The Guardian published an obituary of F N Souza on 17 June 2002 and this appears at,9848,738977,00.html

F. N. Souza and Anya, his daughter

Some Press Reports
1. The Sunday Times. 4 July 1999. Having disabled babies will be 'sin.
2. New Scientist. 24 May 2003. Soundbites.
3. Mirror. 18 September 2003. I have Down's but I lead a fulfilling life.
4. Daily Mail. 17 October 2003. Down's But Not Out
5. Other References.

4 July 1999.
Having disabled babies will be 'sin', says Scientist.

For text see

24 May 2003
"There should be more of us with Down's syndrome around the place. We are also human beings. Mum had me, and I gave her happiness. I also give other people happiness. I am alive and kicking!" Anya Souza, a campaigner against prenatal Down's syndrome screening (Down's Syndrome Protest press release, 18 May)

18 September 2003.
I have Down's but I lead a fulfilling life. By Jill Palmer.


Forty years ago, someone born with Down's Syndrome received no education, little healthcare and was likely to live in an institution.

Anya Souza is happy, vibrant and articulate. She also has Down's Syndrome.

But it hasn't stopped her attending mainstream school, having a job, falling in love and living an independent life with partner Paul.

The 40-year-old stained-glass artist has overcome bullying and prejudice, and is determined to fight for the rights of people with learning difficulties like herself.

"Yes, I have Down's Syndrome but I don't suffer from it," says Anya, from North London.

"I'm a human being. I have the same feelings and emotions as others. People with Down's are too often lumped together but we are all different with our own personalities and skills.

"I am not stupid - I'm bright. I can look after myself. I know how to cook, shop, do the laundry and care for my boyfriend.

"I lead a very happy and fulfilling life."

Anya, the youngest of three sisters, was born when her mum was 44.

"In those days, there was no screening for Down's, which is - a good thing for me otherwise I might not be here today.

"My mother always treated me the same as my sisters. She fought hard for me to be independent and didn't want me to be treated any differently.

"She really had to push for me to go to mainstream school, though I was bullied and called hurtful names which upset me. But often it was children calling me 'four eyes', because I wore glasses, rather than being offensive because I had Down's.

"There were other pupils with learning difficulties, too, and we all had our own abilities.

"The worst time was when a new headmistress was appointed and asked what someone like me was doing in her school.

"My mum was furious with her."

Anya left school with three CSE exam passes (a forerunner to GCSEs) and spent three years at college initially studying office skills and then catering.

She was 21 when she met the love of her life Paul Adeline, while attending a conference.

"We were sitting on either side of the aisle in the lecture hall and just looked across at each other and that was it," recalls Anya.

"We went out a few times and Mum was very supportive. But Paul lived with his grandmother, who was old-fashioned and didn't approve of his seeing what she called 'a mongol child'. She was so against our relationship that Paul was forced to end it, although we still kept in touch.""

Anya's next hurdle was getting a job.

"My biggest problem is that people think I can't do things and I like to think I can. It's very hard to get a job when you have Down's.

"People don't give you a chance to show what you can do. They think about what you can't do rather than what you can."

DETERMINED Anya got a clerical job in the offices of the Down's Syndrome Association and later worked for Camden Society For Mentally Handicapped Children, in North London.

That was followed by a job as a development officer for Young People First, a self-advocacy charity for youngsters with learning difficulties.

When her mother, with whom she lived, died 10 years ago, Anya was determined to carry on living in the family flat on her own. "Outsiders were stunned and said I'd never be able to look after myself but I knew I could," she says.

"I have support from my sister Francesca, and my mum's closest friend - who I think of as a second mother - lives close by. She keeps an eye on me and takes me to the supermarket once a week as I can't drive. She is a stained-glass teacher and it was through her that I became involved in the art."

Eight years ago, Anya bumped into Paul in the street and invited him home for a cup of tea.

"We have been together ever since and, five years ago, he moved in with me," she says.

"His grandmother had died by the time we met again so there was nobody to stop our relationship. I'd had three other boyfriends but Paul was always the one for me.

"It makes me so angry when people with Down's Syndrome are denied sex education and are told we shouldn't have sex or live together.

"Safe sex is as important to me as it is to anyone else. Paul and I have a normal relationship and a normal sex life."

Paul, 51, who has diabetes and slight learning difficulties, works at St George's Hospital in South London, giving advice to others with learning difficulties.

Anya combines running their home with her stained-glass art.

She is also a trustee of the Down's Syndrome Association and travels around Britain and abroad giving talks on the rights of people with the condition.

"I want to see a change in the way people view Down's," she says. "There are those who are more seriously affected than me but we are all people and we all have the right to a decent standard of living."

Down's Syndrome Association, 155 Mitcham Road, London SW17 9PG. Call 020 8682 4002 or visit

Down's but not out

Down's Syndrome is a genetic condition. Those who have it share certain physical characteristics and around half are born with heart problems. All have a degree of learning difficulty. There are 35,000 adults with Down's Syndrome in the UK as advances in care and treatment has increased life expectancy into the early 60s.

17 October 2003
DOWN'S BUT NOT OUT ; Anya Souza has a fulfilling career, her own flat and a loving boyfriend. She also has Down's syndrome. Here, in her own words, she gives a touching insight into life with a condition that is still misunderstood

ANYA SOUZA, 40, is an articulate, independent woman with a career and a loving relationship.

She has also faced prejudice all her life because she has Down's syndrome and is now campaigning to change attitudes towards the disabled. Here, Anya, from North London, tells LESLEY GIBSON her inspiring story.

TWO WEEKS ago, my boyfriend Paul and I were out for a walk. As we strolled along, chatting happily, I noticed people staring at us. No doubt they were surprised to see a woman with Down's syndrome hand in hand with a man.

Because I look different from the norm, it is one of those taboos - and people forget that I am a human being like them: someone with hopes, dreams and feelings who is hurt to be labelled as 'cuddly' or 'lovable' as if I were a baby or a pet. I was brought up to believe that I am no different from anyone else.

Yes, I look different, but so what?

When I look in the mirror, I don't see a condition. I see me. I'm certainly not ashamed of my face. Why should I be?

I think I have nice eyes and I like to have my hair cut just so. Everyone is different - it's just people's prejudice that instantly links a Down's face with a childlike demeanour.

Being different does not make us stupid. I have a job I love, working from home as a stained glass artist.

I'm also in a happy, stable relationship, with Paul Adeline, who has a job at St George's Hospital, South London, training doctors how to deal with people with learning disabilities.

He was born with slight learning difficulties and is an insulin- dependent diabetic, but between us we manage fine. In fact, we're just like any other couple. We work, we go shopping, do most of our own cooking and cleaning, and at night, we snuggle up on the sofa in front of the TV. We also have a fulfilling sex life.

Achieving this normality has been far from easy - not because of us, but because of society's expectations of people with learning disabilities or, rather, society's lack of expectations.

For ten years Paul and I had to remain just good friends because his grandmother, who lived with him at the time, didn't like the fact I was 'a mongol child' - even though, by then, I was an adult with a career of my own.

I was just five when I experienced my first taste of prejudice. I had just started a special school and I was having my first arts and crafts lesson.

Like any infant in their first term at school, I was excited about making something I could take home for my mother.

I remembered her pride when my two older sisters had presented her with items they'd made at school, and I couldn't wait for my turn.

The teacher demonstrated to me and the other pupils, who also had learning disabilities, how to make a fish and a rabbit from paper. I watched intently so that I would be able to do it for myself - but then, instead of giving us a chance to make our own, she made ours for us, too.

SHE assumed I was stupid; incapable of doing anything for myself. This was the first time I had been treated differently and I felt shocked and confused. My mother had brought me up to believe I was equal to my two older sisters, yet in this woman's eyes, I was just someone with a condition.

I took the creations home, as I was told, but as I handed them to my mother, I hung my head in disappointment and shame. She noticed, of course, and wanted to know what was the matter.

When I told her that the teacher had made them for me, she was furious.

For the first of several times, she marched off to see the headteacher. It was the beginning of a tireless and determined fight for my education; a fight my mother usually won.

At the end of the first term, I was taken out of a special school and sent to a mainstream one. It was virtually unheard of in 1967 for children such as me to go to 'normal' school, though I didn't know that back then.

But throughout my childhood, my mother - a strong, liberated person - insisted that I was given the opportunities that other children took for granted, and thanks to her I wasn't shipped off to some institution.

So far as she was concerned, my learning disabilities were a mere setback, rather than an obstacle, and she always taught others to focus on what I could do rather than what I couldn't.

People always ask whether I was bullied at the mainstream primary school I went to. In fact, I wasn't because infants aren't old enough to have developed prejudices. My classmates accepted me as I was, and I made lots of friends.

Although I had to spend an extra year at primary school because I wasn't as academic as other children, there was nothing I could not do.

But when I went on to secondary school, some of the children were hateful.

One boy used to spit at me and another was always pushing me over.

When I told my mother, she told me children like that were so ignorant it wasn't worth getting upset about. She taught me to ignore the bullies. If they had a problem with the way I looked, it was their problem - not mine. On the whole, I was happy at school. I enjoyed trips to France and got three CSEs in French, drama and house craft.

OF COURSE, throughout my life, I have noticed people staring at me but I learned not to feel hurt by their ignorance. I felt incredibly proud when I received my exam certificates, and so did my mother. Together, we'd shown the authorities that children with learning disabilities can do well at a supportive mainstream school.

But just as I was about to go into the sixth form, my supportive headmaster left and a new headmistress arrived. She looked at the other children and then at me, and said to my mother: 'What's this mongol child doing in this school?' I didn't understand at the time and my mother didn't explain because she didn't want to hurt me.

But I've since learned that she was furious about it, made an official complaint about the fact that the headmistress had used the word 'mongol' and even took her complaint to the High Court. She won her case.

For years, I'd been accepted, and then along came one ignorant woman who insisted I ought to be in a special school.

My mother explained that she did not trust the new headmistress to provide a supportive environment for me, and felt it best that I continued my education at a school for children with learning disabilities. Looking back, I can see she had no choice.

But it marked the beginning of a campaign of bullying. I was 18 by then, and from the first day, I was picked on relentlessly by the other children at a special school in West London.

I think the others were jealous because I was more able than them, so they singled me out.

The first morning, I was just about to sit down when another girl pulled my chair away. I was really upset. On one occasion, at lunchtime, a girl threw a bowl of hot custard all over me.

It was hell. I was absolutely miserable and would cry myself to sleep.

But I didn't tell my mother because I didn't want to worry her.

I felt lonely. I was an outcast with no friends. For the first time I found it impossible to fit in.

I'd been so much happier in the mainstream school until one woman's small-mindedness meant I was forced to leave. Every day at special school was torture.

One of the most upsetting incidents happened on a trip to the Isle of Wight.

We all went to a disco. At the end, I turned round to find all my classmates and the teacher, who was supposed to be supervising us, had gone, leaving me behind.

I remember standing on the street outside, terrified and crying because it was dark and I was alone, with no idea where I was or how to get back to our hotel. Thankfully, after a few minutes, one of the girls, Lorraine, came to fetch me.

She was the first and only pupil to show me any kindness. She had only slight learning difficulties and she took me under her wing. She stuck up for me. Life became much easier after that and we're still great friends.

I was only at the school a year.

After leaving, I went to college to learn office skills, then did a catering course, both of which I enjoyed.

I came out of education when I was 20, equipped to work and live relatively independently.

There seems to be an assumption that adults with Down's syndrome can achieve very little but I was determined to prove everyone wrong. I got a job in the office at the Down's Syndrome Association and, although I lived with my mother, I was increasingly independent.

Around that time, I met my partner, Paul. I was 21 and he was 32. I know it sounds like a cliche, but it was love at first sight. I'd gone to Oxford with my mother, to attend a social event with a political debating group my mother had joined.

Paul was sitting at the other side of the room when our eyes met.

Like me, he's half-Jewish and half-Catholic, and has learning difficulties, partly because of his diabetes.

There was a real spark between us, but at that time it was impossible for us to have a relationship because his grandmother, who looked after him, would not allow it.

I'd never been interested in boys before, and my mother had never told me about sex - I think she hoped she wouldn't have to - but from the day I met Paul, I found myself longing for a companion.

When I introduced him to my mother, she became very fond of him and approved of our getting together, but his grandmother thought I wasn't good enough.

PAUL and I loved each other, yet we were treated like children and prevented from being a couple just because we had learning disabilities, so we remained just friends.

It was tough. I wanted Paul to stick up for me and for himself - to tell his grandmother that it was up to him to choose his girlfriends. But he didn't. I felt let down but I tried to understand. As usual, my mother comforted me.

'If it's meant to work out, it will one day,' she said.

Another assumption people make about adults with Down's is that we have to be looked after for the rest of our lives, but when my mother grew old, it was I who looked after her. I cooked, cleaned and did everything for her.

I know some people were surprised at how well I coped but I felt proud of myself. Eventually, she had to go into hospital and her death, after a heart attack, on January 2, 1990, tore me apart.

I felt utterly wretched and cried for hours. Thankfully, I am very close to my sisters - but I still felt lost, bewildered and bereft.

My mother had made provision for me in the event of her death; she'd thought of everything. It was typical of her and, yet again, I felt overwhelmed with love and gratitude. From an early age, she'd told me that when she died, I should go to her good friend, June Standing, who has four grownup children, and whom I'd known for years.

For three months after her death, I stayed with June, and she has been like a second mother to me.

My mother had arranged for me to carry on living in her flat for the rest of my life. When I was strong enough, I moved back in.

Since then, June drives me to the supermarket so I can do my weekly shop. I also have a cleaner. I'm not very good with money, so my sister Francesca helps with my finances and makes sure my bills are paid.

After my mother died, I carried on working for the Down's Syndrome Association until 1994. Then I worked in the office of another charity for people with learning difficulties. Later, I was taken on as a development officer for a third charity, working with young people.

During that time I helped to organise the UK's first ever conference for people with Down's syndrome-at which I was the main speaker. I encouraged others with Down's to use their potential and stand up for their rights.

Not everyone with the condition is able to speak up for themselves.

But like anyone else, they still have feelings and opinions. They just need someone to help them express it, so I do it for them.

In 1992 Paul's grandmother died, and shortly after that, we finally became a proper couple. Paul moved in with me eight years ago, and even the most simple things, such as being able to cook for him, eat dinner together and cuddle up on the sofa, filled me with such joy.

They still do.

WE'VE decided not to have children though. My doctor has warned that there would be a high risk that our child would also have Down's syndrome or diabetes, and I think we'd have problems coping with a child anyway.

We still need some help running our lives, so I think children would be too much of a responsibility. It's sad because I love children but I don't feel upset about it. I'm content being an auntie - to my sisters' six children and my friend Lorraine's 12- year-old daughter.

My happiness was complete when I eventually gave up my job to be a stained glass artist. June is a stained-glass art teacher, and she and a colleague taught me how to make mirrors, candle boxes and various other items. I loved it and decided to make a career out of it.

My father, Francis Newton Souza, was an artist, and I was good at art at school. He left my mum when I was two, so I never knew him, but doing this makes me feel there is a connection between us.

My work has been displayed at various exhibitions, including Ely Cathedral, the Houses of Parliament, and Matisse's gallery in the South of France, and it's great being able to work from home, in my large, light, airy living room.

I'm sometimes asked if it bothers me that I'm unlikely to live as long as other people - those with Down's syndrome usually die before they reach 50 - but I can honestly say that I never even think about it.

It doesn't matter how long a person lives; it's what they do with their life that's important.

Everyone who has Down's syndrome is an individual. We are different people with different personalities, capabilities and skills. We don't suffer from the condition; we enjoy life. We only suffer from other people's prejudices.

FOR more information, or to view or buy Anya's work, contact the Down's Syndrome Association on 020 8682 4001 or go to

Other references:

"I am a person, not a disease."

Docs focus on special needs.

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