Love and disability: ‘It’s still taboo for many’

For Valentine's Day today, the centres where people with intellectual disabilities gather will be full of cards and gifts, says Frieda Finlay, the mother of Mandy (40), who has Down syndrome. "The excitement around Valentine's Day is huge. You could cut the rampant hormones with a scissors, yet many people are denied that part of their lives. It's still taboo for many," she says.

But not for all. "Being in love, it's a nice feeling," says Kieran Coppinger (33), who has Down syndrome and is an actor with Blue Teapot Theatre Company. He says he is "waiting for the right moment" before popping the question to his girlfriend of three years, Jennifer Cox. He starred in a play, Sanctuary , in which two young people with disabilities fall in love.

It’s up to the parents whether young people with intellectual disabilities are facilitated in having intimate relationships, says Finlay, whose daughter’s goal in life has been a romantic weekend away with her boyfriend. Coppinger confirms the importance of matchmaking parents: he and Jennifer were introduced by their mothers, who are friends.

Coppinger and the Finlays are among those who feature in Somebody to Love , a new TV documentary about sexuality in people with disabilities, physical or intellectual, which will air on RTÉ television on Monday. The zeitgeist around disabilities, of which Channel 4's The Undateables has also been a part, is to enlighten a relatively uneducated public by showing the real people involved, hearts on sleeves.

Just 51 per cent of the Irish public believe that people with intellectual disabilities are entitled to have sexual relationships, a 2011 National Disabilities Authority survey found. Sexual relationships outside marriage for the intellectually disabled are criminalised under the 1871 Lunacy Act and the 1993 Sexual Offences Act.

“It’s outrageous, and very few parents know about this, while some parents don’t want to know about it because it’s too troublesome to deal with,” says Finlay. Some parents are embarrassed by and discourage their adult children’s amorous behaviour, or fear the consequences, she says.

“People with intellectual disabilities grow up seeing their brothers and sisters becoming sexual, having relationships and getting married, and they want the same thing. You see downcast women in their 30s with Down syndrome who you can tell have been taught to suppress this.”

New laws on sexual rights
The outdated legislation is being replaced with a new Bill that will bring in laws on assisted decision-making. Yet it has been 21 years since changes in legislation were recommended by the 1996 report of the Commission on the Status of People with Disabilities, chaired by Mr Justice Feargus Flood. It recommended that people with disabilities of all kinds should be supported in their right to a healthy sexuality.

Nearly a decade later, in 2002, St John of God's established Rua, a programme designed to raise understanding and awareness about identity, friendship, relationships and sexuality in people with intellectual disabilities. "The whole idea of people with intellectual disabilities being seen as sexual human beings, in the broadest sense of the definition, is a human right," says Caroline Dench, psychologist with St John of God's Callan Institute.

Rua runs workshops for parents of adolescents and adults with intellectual disabilities that address concerns about relationships.

On a practical level, the outcome of marriage may be children, and in the past in Ireland, the Flood reported stated, people with disabilities had been coerced into sterilisation and non-consensual contraception. Every year there are cases of babies being taken away by the authorities against their parents' wishes, says Frieda Finlay.

This has been an overwhelming fear for Sarah Fitzgerald (30) and her husband John Paul Fitzgerald (31), from Tullamore, both with cerebral palsy, whose daughter Alison (2) was born without any disability. While neither parent has an intellectual disability, it is still unusual for a couple both with cerebral palsy to have a baby.

The 2011 NDA survey found that eight out of 10 people think that people with physical disabilities have a right to sexual relationships, but support for them becoming parents was less, at 68 per cent. Just 38 per cent thought people with intellectual disabilities had a right to have children.

The Fitzgeralds met when they were 17 and 18, and for Valentine’s Day the couple’s only plans are for a home-cooked meal and a good night’s sleep. They are still recovering from the effects on their relationship of Sarah’s intense anxiety that Alison would be taken away. “We fought a lot. Sarah was afraid to be happy about the baby,” says John Paul.

“Every day we have lived with the fear of social services taking her away; they don’t know you but they have the power to. When Alison was a baby, we were always afraid of who would come to the door.”

The couple felt pressure on the maternity ward to not bring Alison home, pressure that Sarah bravely fought, and when the public health nurse visited their home daily for the first six months of Alison’s life, they interpreted this as being watched for signs of a “slip-up”.

Both parents have part-time jobs and receive 33 hours of support in the home per week, since Sarah is in a wheelchair.

“It all comes down to the individual and what they need,” says John Paul. “You can’t blanket everybody with the same services because everybody’s needs are different. With us it’s more practical help, since having people to do the background work gives Sarah more energy with Alison.”

'People may raise an eyebrow'
Deirdre Mongan (35) and her new husband, Steve, who met two years ago, have just bought a home in Newcastle, Co Down, and are expecting a baby this summer. Mongan has been in a wheelchair since the age of 14, when she fell through a skylight on the roof of a farm building. She is a research officer with the Health Research Board in Dublin.

"Life is pretty good," says Mongan. As a teenager, she never settled back into secondary school socially, but blossomed at NUI Galway, where she made friends she has to this day. "Regarding the whole area of relationships, initially people may raise an eyebrow. Before I met Steve, there were a lot of guys who would not go near you, but you don't want to be with someone so shallow, and not all guys are like that."

As Caroline Dench puts it, “if we are to celebrate the human condition and the autonomy of personhood, of which sexuality is a part, and recognise that in essence we are the same, then loneliness is a common disability – maybe the only disability.”

Somebody to Love is on RT É1, Monday, February 17 , 9.35pm