My courageous and determined Mandy celebrates her independence

WE celebrated Mandy’s 40th birthday on Sunday.

She’s a wise and stubborn woman, full of emotional intelligence and a very determined personality. The birthday was a family affair, and thanks to the weather we were able to do it in the garden.

We’ll have a bigger bash to celebrate the big 40 later on. Frieda has picked a trendy and sophisticated place to have the party for her friends. There’ll be cocktails and party frocks, and there’ll be a highly energetic disco. She picked it because people with Down’s syndrome don’t always get to hold their parties in cool and sophisticated places.

At our family do, Mandy’s boyfriend Dessie told us about his different belts in taekwondo. In three years’ time he’ll have a black belt. Then, he told us, when he gets insurance and a licence, he wants to be a trainer and take part in competitions, just like every other black belt. And he’s a DJ, always in charge of the music.

Dessie, like Mandy, has an intellectual disability. You’d know that when you meet them, and you’d forget it when you get to know them. They’ve grown and developed, and they’re strong and independent. Despite their additional needs.

Mandy has travelled to Greece with the Guides, to Connecticut and Shanghai with the Special Olympics, and all over Europe with her family. She went to New York a few years ago to represent Ireland at an awards ceremony, and met Kofi Annan and Christopher Reeve at the United Nations. She’s known most of our presidents and shook hands with Britain’s Queen Elizabeth ueen during the State visit. She welcomed Arnold Schwarzenegger to Ireland the first time he came here, introduced Des Cahill to Bianca Jagger, and on the same night she brought Quincy Jones to meet Ian Dempsey (that’s a long story).

More to the point, she graduated from Trinity College with a Certificate in Contemporary Living, she has appeared on stage innumerable times in everything from song-and-dance to highly charged mime performances, she’s a drummer, a dancer, the life and soul of every party. When she was growing up, she was a fundamental part of our identity. We were known in the neighbourhood as Mandy’s parents, because she had a gift for making friends out of neighbours.

She is also a tribute to her mother. You can’t write about Mandy without writing about Frieda, and her absolute determination to ensure that Mandy is recognised as a full and equal citizen of Ireland. That struggle has also lasted for 40 years, and Frieda has paid her share of the price. Along the way, she has done things that I wouldn’t have been able to do. She has worked with Mandy through difficult transitions — puberty, sexuality, adulthood in an uncertain and sometimes unwelcoming world. She has used the experience to help other parents, and has inspired the development of ground-breaking developments, like the National Institute for Intellectual Disability in Trinity College.

When Mandy was born, we were clueless. We didn’t even know what Down’s syndrome was. Mind you, in those days a different label — Mongolism — was far more common anyway. And we were bereft. This shouldn’t have happened to our first child. It shouldn’t have happened to us.

So Mandy started life as a disappointment. The hardest thing to do was to accept her as a person. And the second hardest was to learn what had to be done. I’ve written here before that the arrival of intellectual disability in your family brings with it a sort of second-class citizenship. You become dependent — on bureaucrats who think you’re trying to cheat the system, on all-powerful and sometimes unaccountable service providers, on professionals who know what’s best — better than a mother with her 24 hours a day, seven days a week, 365 days a year experience.

You battle through all that, and a woman, in charge of her own life, comes out at the other end. Mandy lives semi-independently now, just 10 minutes from us. She values her independence hugely — when she comes home, she announces that she’s only visiting. And she works with great staff, who care for her and about her, and all the friends she lives with.

But resources are always an issue. Mandy, in common with all her friends (who all have very modest incomes and experience the highest rate of unemployment in the economy) has suffered a number of budget cuts directly, and the services they need are being squeezed to the bone as a result of more spending cuts. Standards are still dictated by whatever the service-provider decides they can afford.

Twenty-two years ago, when Mandy turned 18, we got a letter saying she had to finish school immediately, and there was no place for her anywhere else. Twenty-two years later, parents are still getting those letters. The people writing them, and the policy-makers behind them, can have no concept of the cold fear that letters like that produce. There were fewer letters in the Celtic Tiger years, but they started again at the moment the crash came. If there are going to be cuts, people with an intellectual disability are always seen as the ones who matter least. I know from the work Frieda does with parents that all the battles remain the same as they always were — the battle for acceptance, the early support, the lack of awareness of sexual and emotional needs, the dreadful moment when your child turns 18 and loses his or her “constitutional” right to an education, and the fear of what will happen when you and your child get older.

Mandy represented her country in Connecticut, at the Special Olympic World Games in 1995, with tears streaming down the faces of her parents and her sisters as she marched proudly past us at the opening ceremony. That journey, and Mandy’s participation in those Games, were a fundamental part of the inspiration that led, eight years later, to the holding of the World Games in Ireland, and to a magnificent opening ceremony in Dublin. Those Games changed attitudes throughout Ireland — from disability to ability, from stigma to pride. Mandy can claim her share of that change.

Through a set of odd circumstances, I was asked to draft the speeches for everyone who addressed the opening ceremony in Dublin. By and large, the drafts I wrote formed the basis of what people actually said. Here’s the closing paragraph I drafted for Nelson Mandela’s speech:

“For the people of Ireland I hope these Games plant an enduring memory of the fortitude and valour always displayed by Special Olympic athletes, and an enduring commitment to the rights of people with disabilities. For the athletes taking part, I hope that Ireland plants an enduring memory of hospitality and love. For all of us, I hope the Flame of Hope burns forever in human hearts.”

If there’s anyone I know in whose heart the flame of hope is inextinguishable, it’s Mandy. We might have wanted things to be different — she never did. So happy birthday, Mandy. Here’s to many more years of the same proud, independent, defiant person you are.