We all have a right to love
Apart from a social section, CPN also has a group promoting accessible information about relationships and sexuality, another supporting self-advocacy around legislation and rights, another for people who are lesbian, gay, bisexual or transgendered; the fifth is a drama project through which people can express their experiences of relationships and sexuality.
“We are not just doing socialisation in isolation,” says support volunteer Grace Kelly (34), who is secretary of CPN and a full-time PhD student in applied social studies at University College Cork. “Everything fits together.”
The social activities, such as karaoke sessions, dinners out, hikes and pub nights, are not set up especially for people with extra support needs, she explains, as they wanted to get away from the image of people being bussed as a group to and from events. “We’re doing stuff in the community.”
The CPN evolved out of the Irish Sex Education Network (ISEN), set up in 2002 to advocate better sexuality education and policies in disability services. One of its founding members was Frieda Finlay who has been campaigning on this issue for many years.
Although she used to talk about sexuality, in recent times she has discussed it in terms of romance – “because people are denied romance as well, which is the bigger crime”.
People have boyfriends or girlfriends within the services “but the romance won’t flourish unless the parents get a bit involved and support and facilitate it. Parents are terrified of that because most time they go to any talks by services it is all the really negative stuff – abuse, pregnancy, STDs. They say if they don’t know about it, it won’t harm them.”
But the lack of appropriate sex education does nobody any favours. Research by the ISEN some years ago found that sex education within the intellectual disability services was extremely patchy.
It is very hard for parents, acknowledges Finlay, who has raised four daughters, including Mandy who has Down syndrome. “I had difficulty coming through all of this. I would have denied it all – it is not going to affect her.”
But Mother Nature is powerful and is no different for these children, she points out. “Going through puberty is the biggest trauma for parents – their kids suddenly change from being children to adults. There is a huge difference between having a child with a disability and an adult with a disability.”
There are some residential services that facilitate relationships, she says, and while it is not easy for the staff “that doesn’t say it shouldn’t happen”.
She recalls looking at some beautiful new apartments built for a particular service and she started to ask the chief executive if they would have cohabiting couples there. “Before I had the words out of my mouth I heard ‘over my dead body’.”
While the need for supported employment for people with intellectual disabilities is accepted, there is no programme of support for the other half of their lives, Finlay points out.
“Why haven’t we got supported relationships? People will say ‘that is ridiculous – who is going to pay for that? They will all be having babies . . .’ But if you are going to be true to people with mental disabilities, work is only half their lives.”
Irish attitudes to sexuality have changed a lot over the past 10 years and she is hopeful that younger parents of children with intellectual disabilities will have higher expectations for them as they reach adulthood.
Ryan Johns (23) is a CPN committee member who says he could never have envisaged being able to help other people with disabilities. “It is a good thing – I matter.”
Johns lives at home with his mother in north Dublin and attends a services drop-in centre.
He has stopped going out with women from the centre, he says, because he disliked those relationships being under intense scrutiny.
“It is annoying – parents and social workers all breathing over your shoulder. I decided to go outside the service and I have been going out with a girl for a number of years now and am pretty happy.”
He has experienced parents who don’t like him seeing their daughters. “I know how stressful that is for me and for them,” he says, acknowledging it is different for men than for women.
Johns does not think he is very good at relationships: “I have a lot of trust issues with both males and females.”
Lack of privacy
Although people with intellectual disabilities complain of a lack of privacy and say the services are not supportive, support volunteer Michael Feely, a social worker, points out that from a staff perspective it is often not a case of them wanting to stop people having relationships.