Special Olympics changed everything for parents and families

It's like the day John F Kennedy died. Everyone remembers where they were the night of the opening ceremony. For all of us involved, the Special Olympics World Games in 2003 hold indelible memories – of a magical night in Croke Park, of parties in towns and villages around the country, of performances of grace and courage. It was a time when Ireland did itself proud.

It was perhaps, above all, a time when our perceptions were challenged. We used to talk about mental handicap, and before that retardation. We hoped for integration of our children – we were even taught to use words like “normalisation” about our children.

Back then, the arrival of intellectual disability in your home introduced you to a world of charity, dependency, and bureaucracy. My daughter, uniquely among her siblings, was born without rights, because she was born with a disability. My wife battled bureaucracy every day for the services our daughter needed.

Rebirth of hope
That's why, for many families in Ireland, the arrival of intellectual disability meant bereavement, the death of hope and expectation. "She'll never amount to much," a consultant (an expert!) told us, "but she shouldn't cause you too much trouble".

The Special Olympics challenged all that. For us it happened in 1995, when our daughter Mandy (the girl who wouldn't amount to much) wore her green tracksuit with pride at an opening ceremony in Connecticut attended by Bill Clinton.

And for thousands of us it happened in Dublin. We didn’t see people with a disability, we saw athletes and champions. We saw barriers tumbling – especially the barrier of prejudice. We saw our sons and daughters, who used to be hidden in institutional “care”, being honoured at civic receptions all over Ireland.

That was one of the great legacies – a new awareness. The kind of awareness that should change everything.

But did it? Special Olympics stepped up. It ran the best Games anyone has ever seen, and created a new vision. It has grown since then, with new clubs, new sports, new athletes, new schemes such as the Athlete Leadership Programme. It created other legacies, contributing significantly, for instance, to the development of the National Institute for Intellectual Disability.

But did the rest of us step up? Two years before the Games, our Supreme Court decided that the only constitutional right a person with a disability had – the right to an education – should be limited by reference to the age of the person. Two years after the Games, a government published and passed a Disability Act, much-trumpeted as enshrining the rights of people with a disability in law. World-leading, they said. Transforming Ireland, they said.

The 55 pages of the Act don’t mention the word “rights” once. Several sections of the Act have never been commenced. And the same thing applies to the Education for Persons with Special Educational Needs Act, passed a year after the Games.

There is still legislation on our statute books that defines people with an intellectual disability as lunatics, and makes it illegal for them to enjoy sexual relationships with each other. (Change is imminent with the arrival of a modern Capacity Bill – but it has been imminent a long time now.)

Every budget since the death of the Celtic Tiger has cut allowances for people with an intellectual disability.

Queues for services are lengthening again, and charities hold enormous power over people’s lives. Much promised reform appears to be on a longer and longer finger.

As someone once said, a lot done, a lot more to do. But new standards are being introduced, accompanied by inspections. Most importantly, parents, and people with an intellectual disability themselves, are demanding to be heard. The important value-for-money report, with its recommendations about individualised funding, is at least being examined.

And intellectual disability is not so much seen nowadays, when it arrives in a family, as the end of hope. Our children may face many more challenges than other children – we know that. The experts and the professionals – and the politicians – may still have a lot to learn.

Right to win
But we know now that our children have every right to be winners. They have a right to expect decent services and decent outcomes. When our children participate in sport, they don't cheat, they don't dive, they don't need performance-enhancing drugs, they don't have to get paid to give everything they have.

The Special Olympics taught us that about our kids. It taught us to be proud. No wonder we can never forget it.

Fergus Finlay is chief executive of Barnados Ireland