Health

Sunday 21 September 2014

The right to love and be loved

People with disabilities have needs and desires like everyone else but for many the law is shut firmly in their faces. It is a complex issue, but at least now the debate has started. Celine Naughton reports

Blazing a trail: Sarah Fitzgerald, her husband, John Paul, both with cerebral palsy, and their two-year-old daughter, Alison, who was born without any disability. Photo: Joe O'Sullivan
Eamon Cleere from Kilkenny. Photo: Dylan Vaughan
Eamon Cleere from Kilkenny. Photo: Dylan Vaughan

A shocking, enlightening and poignant RTÉ documentary this week chipped away at the barriers surrounding one of the last great taboos – sexuality and disability.

One of the most bewildering revelations in Someone To Love, watched by 360,000 people, was the fact that it is illegal for any unmarried person with an intellectual impairment in this country to have sex.

That may appear outrageous in the 21st Century, but it is a complex area and not one that lends itself to quick fixes. But a debate is overdue. And it appears we are going to get one.

Two days after the broadcast, Senator Katherine Zappone described this legislation as "a cruel and restrictive hangover from a different time" and called for a debate to drive its reform.

One heartbreaking insight came when Tullamore mother Sarah Fitzgerald revealed how she had spent anxious months afraid to bond with her baby for fear she would be taken away from her. Sarah and her husband John Paul have cerebral palsy, and are clearly very much in love and fantastic parents to their daughter Alison, born without a disability. Yet they live under a cloud that their loving family unit could be shattered if the authorities took a notion that they didn't have the capacity to look after their child. John Paul says they're trying to "blaze a trail" for other couples with disabilities.

"We're not hidden away," he said, "and we're not asexual. We have the same feelings as everyone else."

But therein lies a problem – it's not always easy to find a mate when you have an obvious disability. Dating websites have not yet proved successful for Eamon Cleere from Kilkenny, but he remains optimistic. And while he doesn't usually discriminate when it comes to girlfriends, right now Eamon is drawn to dating an able-bodied girl.

"It doesn't matter to me whether a girl is disabled or not, but I'd like a challenge with a non-disabled girl again," says the 29 year old who is making a mark for himself on the music scene as Amos, a DJ whose professional highlights include playing to an audience of 10,000 in Spain supporting Calvin Harris, as well as gigs around Ireland.

 

Not everybody is amenable to that idea, however. He remembers dating an able-bodied girl whose friend remarked in disbelief, 'You're going out with a guy in a wheelchair?'

"That was hurtful," says Eamon, "but I've had some great relationships and yes, I've had sex and it was very nice, but I'm still searching for somebody to love." So who is his ideal mate? "Someone like me – good personality, good-looking!" he quips. "Seriously, I want a girl who will understand my limitations and see what I can do, not what I can't. It would be nice to have somebody to love."

"Everybody has the right to fall in love and be loved," says Marie Wolfe, a 39-year-old with a mild intellectual disability who lives in Galway.

"The problem is that people with intellectual disabilities don't always have control, even over where they live and who they live with.

"They're often wrapped in cotton wool by the social services that take care of them and make all their decisions for them. But life is not 'one box fits all'. People should be given the supports to live independently."

As for the ban on sex outside marriage for the intellectually impaired, Marie says, "Scrap that law! It makes no sense. Many people with intellectual disabilities are well able to consent to their own activities, sexual and otherwise. Why shouldn't they enjoy loving relationships the same as everyone else? It's a basic right. We want rights, not charity."

Yet, according to Pat Clarke, CEO of Down Syndrome Ireland, finding love – particularly for people with intellectual disabilities – is far from straightforward.

"Unlike years ago, when these people were locked away in institutions, they are now in the community and they are open and forthright about what they want," he says.

"However, there is a level of protectiveness, both in the community and among parents, that makes it hard for them to build close relationships."

For parents, the issue can be a minefield. John has a 28-year-old son with Asperger's Syndrome whom he doesn't want to name in order to protect his privacy.

We'll call him Paddy. Paddy's had a few girlfriends and he plans to marry and have a family one day, but first, he'd like to have sex. In principle, John and his wife don't have a problem with that.

However, the prospect of Paddy embarking on a sex life is also fraught with complications.

"It's doesn't help that when he meets a girl he wants to cut to the chase," says John.

"When he does meet a girl, we have to be in touch with her parents and their dates are controlled; I bring him to the girl's house for a few hours and she comes to ours.

"We watched the programme, Somebody to Love, together last Monday and when it came to the hotel room scene at the end, he announced that he wouldn't wear a condom if he were in that situation. We used the opportunity to explain why contraception is so important, but inside we were thinking, 'God, what if he got a girl pregnant?'

"It's difficult. Our son deserves as much happiness as the next lad, yet part of me wishes he could accept his limitations. That's not something I like to admit even to myself but, you know, we're always watching the legal side of things. The law says it's a crime for him to have sex.

"That law is wrong, but even though nobody has been prosecuted yet, it's there. He could end up in trouble and that's a worry too.

"I don't know what he will be capable of in the future, but we take things day by day and hope for the best. Right now he's embarking on a relationship with a new girlfriend, so here we go again ... "

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