SOUZA, 40, is an articulate, independent woman with a career
and a loving relationship.
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.
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.
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
I look different, but so what?
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?
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.
different does not make us stupid. I have a job I love,
working from home as a stained glass artist.
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.
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.
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.
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.
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.
any infant in their first term at school, I was excited
about making something I could take home for my mother.
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.
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.
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.
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
I told her that the teacher had made them for me, she was
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.
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.
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.
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
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.
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.
when I went on to secondary school, some of the children
boy used to spit at me and another was always pushing me
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.
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.
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.
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.
years, I'd been accepted, and then along came one ignorant
woman who insisted I ought to be in a special school.
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.
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.
think the others were jealous because I was more able than
them, so they singled me out.
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
was hell. I was absolutely miserable and would cry myself
I didn't tell my mother because I didn't want to worry her.
felt lonely. I was an outcast with no friends. For the first
time I found it impossible to fit in.
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.
of the most upsetting incidents happened on a trip to the
Isle of Wight.
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.
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
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.
was only at the school a year.
leaving, I went to college to learn office skills, then
did a catering course, both of which I enjoyed.
came out of education when I was 20, equipped to work and
live relatively independently.
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
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.
was sitting at the other side of the room when our eyes
me, he's half-Jewish and half-Catholic, and has learning
difficulties, partly because of his diabetes.
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.
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.
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.
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.
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.
it's meant to work out, it will one day,' she said.
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.
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.
felt utterly wretched and cried for hours. Thankfully, I
am very close to my sisters - but I still felt lost, bewildered
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.
three months after her death, I stayed with June, and she
has been like a second mother to me.
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
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.
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.
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.
everyone with the condition is able to speak up for themselves.
like anyone else, they still have feelings and opinions.
They just need someone to help them express it, so I do
it for them.
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.
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.
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.
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.
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
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.
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.
doesn't matter how long a person lives; it's what they do
with their life that's important.
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.
more information, or to view or buy Anya's work, contact
the Down's Syndrome Association on 020 8682 4001 or go to