We all have a right to love
CPN members Phil Davy, Grace Kelly, Ryan Johns, Michael Feely and Claire Adams. photograph: brenda fitzsimons
'I am more of a social person': Claire Adams with her mother Monica. photograph: brenda fitzsimons
One group is helping to erase the stigma attached to relationships for those with intellectual disabilityLike any mother, Monica Adams wants her daughter Claire (24) to have somebody special in her life. But, she admits, it took her a while to come around to that view because Claire has an intellectual disability.
“As a parent I would be afraid that somebody would take advantage,” Adams explains. “I probably feel I am always going to be around and that I am going to mind her – but that’s not going to happen.”
She acknowledges that her daughter does not like being on her own. “I would hate her to be lonely,” she says.
“I am more of a social person,” agrees Claire, who says she has had two relationships since she started attending her service, Prosper Fingal, in north Dublin.
“Claire’s choices weren’t great and we just had to keep an eye on it,” says her mother. “It was really hard for us; I really wanted to say ‘no, it is not happening’.”
Monica’s outlook had shifted as she watched Claire’s involvement with the Connect People Network (CPN), an independent organisation led by people with extra support needs which promotes their rights around friendships, relationships and sexuality.
After attending some meetings organised by the CPN and talking to other parents, Monica realised Claire was entitled to seek the same sort of fulfilling emotional life that her older three siblings have.
Monica’s enlightened attitude, which is shared by her husband Jimmy, is still relatively unusual in Ireland, where outdated legislation sets the tone for a society in denial. People with intellectual disabilities are not seen as having the same feelings and desires as others, so there is no recognition of their need to form relationships, says Siobhán Kane of Inclusion Ireland, an umbrella group that represents people with intellectual disabilities.
“There is a massive fear. When you say to somebody, an adult with an intellectual disability should be supported to have a relationship, there is a big red flashing light in front of their eyes that says ‘sex, sex, sex’ and people are terrified by the implications of that.”
Kane recalls how, at an advocacy conference for people with intellectual disabilities, there was a “wish wall” for participants.
So many people wrote about wanting a partner or to be married that it made her think a lot about the companionship and intimacy they miss out on when they are either not facilitated in or actively discouraged from having relationships.
Ireland signed up to the UN Convention on the Rights of Persons with Disabilities in 2007 but falls far short of its requirement to take “effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships . . . ” Laws will have to be changed before we can ratify the convention.
For a start, the 1871 Lunacy Act still governs consent issues. “In Ireland you either have 100 per cent capacity to make decisions or you have no capacity whatsoever and the court makes all the decisions about your life,” explains Kane.
“There is no in between. In other countries there have been pieces of legislation since the 1870s, which moved towards supported decision-making – where there is a group of people to help an individual.”
The drawing up of a Mental Capacity Bill was proposed in 2008. Five years later, it has still not been drafted but what is now called the Assisted Decision-Making (Capacity) Bill is in the pipeline.
The much more recent Criminal Law (Sexual Offences) Act 1993 would also have to be changed. This makes it an offence to have sexual intercourse with a “mentally impaired person” outside marriage.
Inclusion Ireland points that on the one hand it does not go far enough to protect people from abuse because it only stipulates intercourse – oral rape, for instance, is not covered – and, on the other hand, it criminalises consenting adults.
With this legal backdrop, it is no surprise that people with intellectual disabilities encounter both practical barriers and societal disapproval of them having a love life.
Re-energised within the past year, CPN now operates on five different fronts to address issues faced by people with extra support needs – a term carefully chosen by the peer group that leads the organisation, serving as equals with support volunteers on the committee.
“Everyone has a disability in one way or another – there is none of us perfect,” points out Claire, as she sits in a meeting room in the Carmelite Community Centre in Dublin on a recent Saturday morning with members of the CPN committee.
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.
“Their job is to keep people safe at all times. They have a professional responsibility for it.”
Phil Davy (54), who is vice chairwoman of CPN and lives independently in her own house in Ballyfermot, says they want to break down barriers to marriage. She is amicably separated after 10 years of marriage to a man she met within the disability services and she would like to see others getting the chance of marriage, if that’s what they want.
Claire would like to get married. “She has the dress picked out,” says Monica, who believes her daughter could live with somebody if she met the right person.
“We would like Claire to be happy but, at the same time, it is trying to meet the person who is on the same level as her. I think the CPN does that.”
Connect People Network is having a meet-up day and AGM tomorrow in the Carmelite Community Centre, Aungier Street, Dublin, from 10.30am to 2.30pm. For more information, see connectpeoplenetwork.comor tel: 087-1857578.
'I have to let him make mistakes'
The one thing that Alan Condren (27) craves in his life is a girlfriend and his parents, Tom and Anne, are doing everything they can to support him in finding one.
“Over the past three or four years he has really wanted to have a relationship but he doesn’t quite have the ability to go out and get it for himself,” says Tom of his eldest son who has Asperger’s syndrome, along with a learning difficulty. “It is a huge hole in his life.”
Alan, who travels from their home in Greystones, Co Wicklow to work four days a week in the kitchen at St John of God’s Step service in Sandyford, Co Dublin, has met a couple of women but Tom would not go as far as to call these encounters relationships.
“It is all very controlled. There is no leaving them alone for long periods or leaving them alone in a house. And he’s not always happy with that,” says Tom with a smile.
“At the same time, you have to give them a bit of leeway.”
He believes there is societal disapproval of people with intellectual disabilities dating, yet, having met a lot of people like Alan, he sees how most of them have the desire for a relationship.
He understands how protective parents are and believes that some of them would probably prefer it if the whole issue would go away.
“I don’t see it like that. I want Alan to have as much out of a relationship as he is capable of and I am still not sure what he is capable of. But I have to let him go out there and make the mistakes.”
Although there can be heartbreak when things don’t work out, he believes every encounter is a learning process for Alan.
It is most likely that any girlfriend would come from within the disability community, says Tom . He and Anne joined the Connect People Network last year, not only to give Alan more opportunities to socialise but also to volunteer themselves for the social committee.
‘One or two kids’
“I know what parents go through and what their adult children go through, so you really feel you want to do something.”
Talking to Alan ahead of this interview, Tom asked him what else he wanted, besides a relationship.
“He said he thinks he would like to have a family with one or two kids. That would be another huge step to take.”
Tom could only see that coming about with huge support from the disability services, themselves and the partner’s parents.
“I certainly don’t see it as something that he should be denied either,” he stresses, although that is not to say they wouldn’t have huge concerns over it.
Tom, who is retired from An Post, and his wife are approaching their 60s, and they worry about their son’s future.
“We would like to see him settled,” says Tom, “in some sort of way, in some sort of set-up – preferably in a relationship, for his own mental health, with the support that he deserves.”