RELATIVE VALUES: BARBARA AND KATE POWELL

Kate Powell is 20 years old. She is taking a two-year vocational access course at South Thames College, works in the Down’s Syndrome Association office one day a week, belongs to La Rondina Dance Company and is a member of Dolphins swimming club. She lives with her parents in London, and has four older brothers and sisters. Kate’s mother, Barbara, is on the management committee of the support group, Contact-a-Family.

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BARBARA:

I knew the moment Kate was born that something was wrong. I had a very nice midwife, who said: ‘What do you think it is?’ and I said straightaway: ‘I think she’s got Down Syndrome’. My other children had come out fighting, but Kate was bluish and floppy. Definitely different. She was an extraordinarily pretty baby—small, 6lb 6oz, and very delicate, and she had the sweetest little face.

Initially, all the images you have are negative, and I was very worried about how other people would react, but they tended to take their cue from me. The word spread, friends wrote—lovely letters—and the children [17, 14, 10 and 8] were extraordinary. They did exercises with her, talked to her, sang and danced with her. Her first word was ‘nice’. She was a very picky eater and we were always saying, ‘Look, Kate, mmmm, nice!’

At every stage Kate exceeded our expectations. She was walking and talking by 2 ½. She was always thrusting a book at someone to have a story read to her. And she very quickly grew into a hilarious little person. Her ballet teacher was delighted by her; she’d never met a child with Down Syndrome and hadn’t expected her to be so chatty. I felt such a sense of pride that she was achieving so much, that just by being herself, people’s preconceived ideas were shattered. The problem with Down Syndrome is that it’s an instant label, because the facial characteristics are so obvious. You get the look, then recognition followed by the prejudice. I’m told all the time how ‘sweet’ and how ‘happy’ Down’s children are, and what wonderful companions they make. It’s all rubbish. If you saw Kate having one of her strops, you’d know what I mean.

She gets down like everyone else, because the more self-knowledge and understanding of life you have, the less likely you are to be continually happy. If you were completely in the dark about the world and your place in it, if you knew nothing about loneliness or poverty or suffering, you’d be happy all day long. But Kate is aware of her situation. She was about nine when she asked me, ‘Have I got Down Syndrome?’ She wanted to know what it was and how she got it. She couldn’t understand how people knew just by looking at her. Then it clicked and she was very upset. Her chief complaint was that it wasn’t fair. She’d ask, why her and not anyone else in the family? We tried doing her hair in different ways and taking her out for new clothes to boost her self-esteem, but in the end I had to say, ‘You’re right. It isn’t fair, but you are who you are and we all think you’re beautiful.’

We never stop thinking ‘What would Kate be doing if she didn’t have this syndrome?’ Sometimes I feel guilty about that because it belittles who she is. And she is an extraordinary person. I remember going shopping with her once when she was younger. I took my eyes off her for a moment and the next thing I heard was this scream from another child. The mother glared at me and marched off. I turned to Kate and she said, ‘He kept staring at me and I didn’t like it, so I pinched him.’ Now I think she feels more comfortable with who she is, and she has an incredibly full life; she’s got a wide circle of friends and they’re all very close and tremendously supportive of each other. I’m not saying she wouldn’t wish it all away, just to be like everyone else, but she does realise that she’s special. She went through a phase of asking me: ‘Am I special, Mum?’ I’d say ‘What are you on about? You’re all special because you’re all our children.’ Then I realised she’d picked up on the phrase ‘special needs’ and she liked that. So, we’ve gone from the word ‘mongol’ to ‘mentally handicapped’ to ‘special’—and I think that’s about right.

The thing about Kate and me is that we laugh about everything. There is nothing precious about us, and she gets teased constantly by her brothers. There is sadness, of course—real sadness. No matter what Kate achieves, she probably won’t do the simple things my other daughters took for granted. Going out with boys, going to the pub, getting a pay packet. And Kate wants these things. It’s hard to know where to draw a line between protecting her and setting her free, because with education and self-knowledge comes frustration.

I’m keen for her to share a flat with a friend at some point. All my efforts to teach her about independence are directed to that end, but she still says, ‘I want to stay here and look after you and Dad.’ So, for now, that’s what she’ll do, and we’re more than happy because she’s such a lovely person to be around.

KATE:

I love my mum, I really do. She is very understanding and patient. She helps me with maths, which I find quite difficult, and she helps me with reading and writing. She’s a very calm and lovely person and she likes helping people. I’ve learnt to do sign language because I like helping other people too. I think we’re very alike. Mum loves music and we listen to tapes. Sometimes we tape ourselves singing ‘How great thou art’. We always have a laugh. She starts, then I start, and we can’t stop.

I went on a trip with my friends from the Rathbone club—that’s a club for people with moderate learning difficulties. We had a photo taken of us dressed up in old-fashioned clothes and big hats. We looked really funny and my mum thought so too, but some of the mums think you’re not supposed to laugh because we’ve got Down Syndrome. But it’s okay. I’m normal to me, and we did look funny.

I’ve got lots of friends. I don’t think you can have too many friends, actually. I care for them, and help them with their college work and other problems. Some of them find it hard to talk. I’ve got one friend who is very quiet. She has moderate learning difficulties and communication problems; she can talk but she isn’t confident enough to say anything in class, so she tells me things and I tell the teacher.

I do work experience in an office: filing and photocopying and computer work, that kind of thing. I’m very independent. I even get the bus on my own, every day.

I know I’m different to most people because I have Down Syndrome, and I feel better when I’m with my friends because we all have special needs and we look after each other. But we’re not all the same. Some people have mild learning difficulties; others have more serious problems. Most people don’t understand what having special needs means. They think it’s an illness and they’re very cruel sometimes. They call people names and sometimes I hear it when I’m on the bus. I try to ignore them. I don’t understand why they do it. There are some people at my college who are far less able than me, but I don’t call them names. I’m kind to them and I help them.

A word I hate is ‘mongrel’ [sic]. It’s a word ignorant people use. They’re very rude. It happened a lot when I was younger. When I tell Mum, she says, ‘Let’s talk about it.’ She says people say things because they’re not thinking, because they want to look big in front of their friends. They don’t know who I really am. It’s just words. Sometimes I go up to people and I say, ‘Do you know what that word means?’ They laugh because they don’t know what they’re talking about. Sometimes they say, ‘I’m sorry, I didn’t realise.’ That makes me feel better, because I’m not stupid, I’m special. All children with Down Syndrome are special, but I know I’m special because when I was born, my mum hugged me and took a picture of me and then she brought me home and loved me.

I saw a programme on TV called ‘Changing faces’, about a man with Down Syndrome who wanted to change the way he looked. I thought it was shocking, because changing someone’s face won’t take away the syndrome: that will always be there. You can change the outside but not the inside. I like the way I look, because it’s me. The man on TV had operations on his eyes and mouth to make himself look more ‘normal’. I think it was because his mum and dad died—he was an orphan and he was very unhappy. I felt very sorry for him, actually.

I worry about my mum and dad. Thinking about them dying makes me unhappy. I don’t even want to talk about it, because I want them to look after me always. And when they can’t look after me, I’ll look after them. Simple, isn’t it? I think I’d like to get married. I like boys with Down Syndrome best because they’re kind and they’re like me. I did have a boyfriend, Martin, from my dance company, but he already had a girlfriend. I still think about him. Mum said, ‘Well, there’s plenty more fish in the sea’, which isn’t really what I wanted to hear.

But sometimes I think I never want to leave home. I just want to live here with my mum and my dad and my dog forever. Mum is always asking if I’d like to share a flat with one of my friends, but I always say, ‘No. Not yet. I’m not ready.’ When I do go, Mum will be a bit sad. She doesn’t say anything, but I know she misses my brothers and sisters. When they’re all home, they put music on and we dance about and sing, and there’s a lot of noise. That’s my favourite time of all. I love my family, I really do.

© Times Newspapers Ltd.

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