Monday 21 October 2019

Brendan O'Connor: 'Not lesser but different: it's how Tim breaks the stigma'

Tim Shriver is a typical US privileged white male, but his family history turned him into a campaigner who uses that for good, writes Brendan O'Connor

SPECIAL OLYMPICS: Tim Shriver with one of the young athletes
SPECIAL OLYMPICS: Tim Shriver with one of the young athletes

White male privilege, and even the noblesse oblige of do-gooder privileged white males, gets a bad rap these days. Tim Shriver, seems, in some ways, a typically privileged white male. He went to Yale, of course, and he has been, in his time, a movie and TV producer. His father was US Ambassador to France, and his mother was Eunice Kennedy Shriver of the Kennedy family. Which means Robert Kennedy, Ted Kennedy and John F Kennedy were his uncles. And also that Rosemary Kennedy was his aunt.

When Rosemary Kennedy was being born, the attending doctor was delayed. And a nurse tried to stop the birth from happening until the doctor came, first by holding the legs of the mother, Rose Kennedy, closed and then, when that didn't work, by reaching into Rose's birth canal and holding the baby's head in place for two hours, thus depriving the child of oxygen. And that is perhaps what makes Tim Shriver different.

Maybe Rosemary is why Tim Shriver worked for many years as a high school teacher and also as a special education teacher. And Rosemary is certainly why Shriver effectively inherited the task of running the Special Olympics from his mother. Maybe Rosemary is why Tim Shriver uses his privilege for good.

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There was a great old buzz about the Special Olympics last week. RTE news ran wonderful reports every evening. Paul O'Flynn, a real news and sports broadcaster sent out to cover the event, was pitch perfect, managing to convey the joy of the occasion and tell great stories without ever being remotely patronising.

But threaded through the sporting coverage were lovely moments, like one athlete's parents saying that they did not feel he would have ever been able to live independently without the discipline and confidence that being an athlete gave him, and one victorious athlete expressing her pride on what she says was the greatest day of her life. The reports went down particularly well in the homes of Ireland's thousands of budding Special Olympians, even if most of them will never make it to the World Summer Games.

The whole country glowed with pride too when Tim Shriver, who will always be a Kennedy to us, showed his political genes by singling Ireland out for special praise on the Special Olympics front.

"Ireland is in some ways our laboratory of excellence," he said, "So we need Ireland to be on the cutting edge, not where it is today, but we need it to be growing and getting better and improving. Irish sport, Irish healthcare, Irish education… People ask me where do I go to see what the Special Olympics movement can do, I say go to Ireland and we need that to be the case not just today, but five, 10, 20 years from now."

Indeed, he went so far as to say that, "In some ways, the Ireland model is not the model of how to do a great event, it's how to change a country."

We're still suckers for a bit of Kennedy sweet talk.

But Shriver is a spiky kind of character, too. He's a guy who's not afraid to get into a row. He has waged a war on the use of the word 'retard' in the US for example, even trying to get the film Tropic Thunder withdrawn. So he's not all happy clappy. And last week he went on to say that, "We need more inclusion in schools in Ireland, we need stronger local clubs."

As regards the world in general, he interrupted the feelgood buzz around the Special Olympics to say that, "There's terrible stigma all over the world and it's subtle, it hides… Increasingly, people think everything's done and then they move on with their lives and they ignore people who have challenges, people who are different, people who have different forms of intelligence, they're not seen still in mainstream life and in most places in the world."

It's important to reflect on those words at times like this. We've had a week of great goodwill towards people with intellectual disabilities. Apart from the Special Olympics, World Down Syndrome Day was celebrated in schools and communities around the country last Thursday, and there was huge visibility of kids with Down Syndrome, if not so much of adults. And the temptation is to think we've done our bit, feel good about it, and move on with our lives, largely ignoring people with different forms of intelligence.

I obviously can't speak for people with DS, but I do know that a lot of parents who are advocates for their children with DS have mixed feelings about some of the celebrations around World Down Syndrome Day. Some, for example, find it odd that everybody is madly celebrating DS, when the reality is that people with DS will probably soon become extinct.

This is not to question anyone's choices, but the reality is that the picture that is painted to parents when their baby in the womb tests positive for DS, and the general stigma and attitude around people with DS, and the lack of support available to families, encourages most people to abort when they have the opportunity. They're very cute one day a year, but you wouldn't want one of your own.

Another parent commented on how nice it was to see people acknowledging our children on the day, but wondered where all these people were when her baby was born and she felt friends and even family were avoiding her. I said to her, maybe it's a sign the stigma has lessened in the last few years since she had her baby. She didn't agree. She said she still felt slightly set apart even in her close circles.

And these people are not being mean-spirited. God knows most parents and advocates of kids with an intellectual disability are pathetically grateful for any bit of attention or acknowledgement for their children. But you can't blame them for wondering why all this goodwill doesn't translate into proper supports, proper services, into being treated with dignity and respect by officialdom rather than having to fight for every entitlement.

It should be said that people in Ireland are generally extremely kind to people with intellectual disabilities. But then maybe they don't want kindness, maybe they just want rights, and an end to stigma.

I have a small idea. Ultimately this choice will be for my daughter to make. But for the time being, I am her advocate and her ally and I have to try and glean what I think is best for her and what I think she would like. So right now, subject to her approval in later years, I am suggesting on her behalf that we stop referring to her as someone with an intellectual disability.

I understand that the label has its uses, that it can, for example, be a useful way for getting resources. Indeed, many people in South Dublin are paying thousands privately to try and get such a label for their kids.

For my Mary, it's not so useful. Outside of some extra help that her school works hard to give her against all kinds of difficulties, Mary gets no other services. So the label isn't any use to her from that point of view. And on the downside, I think the label makes many people stigmatise her and regard her as less of a person, something less than a full human being. When in reality, she's different - but so is your kid. And all kids are different in different ways.

So let's take a leaf from Tim Shriver's book and try and cast off the tyranny of IQ, and just think about people as having different kinds of intelligence - not lesser people, just different people. And maybe that will help to break down that subtle stigma Shriver talks about.

Of course, when Shriver talks about people with different kinds of intelligence not being seen in mainstream life, he speaks from his family's experience. While the Kennedys refused to put his Aunt Rosemary in a home for many years, they didn't exactly advertise her difference in an era when eugenics enjoyed popular mainstream support. Old Joe Kennedy eventually worried that her behaviour and her situation would jeopardise his sons' political careers. Rosemary, who had become a bit of tearaway in her 20s, was given a lobotomy, which left her severely incapacitated, following which she was hidden away, even from her family, for 20 years. So when Tim Shriver talks about stigma, he knows what he's talking about.

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