It has been recognised nationally that people with learning disabilities have a right to “the same degree of fulfilment through relationships and sexuality as anyone else” (Commission on the Status of People with Disabilities, 1996: Par 18.2). And internationally, the UN Convention on the Rights of Persons with Disabilities states that “States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others” (2006: Article 23). However, the day-to-day reality of seeing these rights come to fruition is far from straightforward. Families and disability service personnel face many difficulties in knowing how to balance their desire to ensure that a person with a learning disability lives life to their fullest potential, with their desire to keep that same person safe. Sexuality is still a topic that we are only beginning to become open about discussing in Ireland, and often it would seem easier to say nothing at all than to open the can of worms that discussing disabled people’s sexuality entails. Yet dialogue between people with learning disabilities, their families and disability services is crucial.
This article discusses some of the findings of the author’s PhD research into the sexual rights of people with learning disabilities in Ireland. I present some of the findings from a series of focus groups I carried out with separate men’s and women’s groups in a disability service in the Midlands. Altogether there were 15 participants (7 women, 8 men) who ranged in age from 23-41.
One of the key findings which emerged from the research was that participants had the same desire for dating and relationships as anyone else. Patrick*: I love [girlfriends] myself! It’s too good! [Smiles and laughs] I wish to God I’d one myself!
Six participants had been in relationships, and/or were currently dating. Some spoke about how important romantic gestures were to them.
Libby*: He bought me a Valentine’s teddy of me and him like huggin each other and I have it on my bed at home. And he used to tape tapes for me—love songs. Yeah and I miss that sometimes For some people, physical appearance was important:
Paul*: The girl is lovely, she’s really, she’s hot … I love the blondes! Others were enjoying all the support that having a partner entails:
Victoria* [Re what’s important in a partner]: Commitment, honesty, if one of ye have a problem, like ya know, you can share with the other partner… You’re able to work out your differences. Just someone to be there to talk to and listen and understand…That will have respect for you and you have respect for him and you have to give and take.
Some participants wished to get married, while others liked their independence:
Researcher: Would you like to get married?
Victoria*: Love ta! Yeah, the whole works! Walking down the aisle, yeah.
Patrick*: I love weddings so much; I’d say if I was ever… I’d love to invite everybody. I have a big family, it’d be a big, big wedding.
Arnold*: I dunno—I’ll stay a bachelor—I won’t get married anyway… I like girls and all that… [I’m] just happy.
Unfortunately, for many individuals opportunities to meet potential partners were limited, and several people had never experienced a relationship, although they very much wanted to.
Researcher: So has anyone here ever been in love?
Patrick*: Sorry… I just want to say who will take me in the first place, ya know?
Researcher: Why…?! [Pause] Do you think it’s hard to meet girls?
Patrick*: It is, yeah.
A lack of opportunity with regard to socialising and dating was a large barrier. At least half of research participants mentioned family members and their service as their sole source of socialising opportunities.
Researcher: Is there anyone that ye can go out with at weekends?
Leanne*: I go out for a walk with my mammy and my daddy.
Elizabeth*: I would go out with [my brother] when he comes home at the weekend.
This meant that participants were restricted in who they met, and when romantic opportunities presented themselves, staff and family tended to be present. With respect to sexual relationships, existing Irish research tells us that physical intimacy is something only a minority of people with learning disabilities are experiencing, and in general as the degree of sexual intimacy increases, the numbers participating in this kind of activity decreases (Caffrey 1992). In this research study, two women who were living quite independently indicated that they had some experience of physical intimacy. However, for the majority of others, knowledge about sexual intercourse was scanty and mainly seemed to have been picked up from watching television. Thus, when asked what sex was, a group of male participants stated:
Paul: Well you can have sex in bed or something like that.
Patrick: That’s it!
Paul: And a man lying on top of the woman… They’re wearing nuthin. Only… Naked!
Arnold: Well, the fella would have boxer shorts on, just to be in his belly, ya know? He’d just be relaxed and happy.
Because many of the participants were picking up their information from the television, there were huge gaps in their knowledge and several wanted the researcher to provide them with information, which was difficult, given the research context.
An overriding theme in the research was prohibition. Participants spoke about relationships as something not allowed in their service, or as something their family might have objections to, or concerns about. Participants spoke of getting into trouble with staff for having boyfriend/girlfriend relationships
Researcher: Can you go out with girls from ___?
Brad*: If you want to, yeah… But, in ___, what the staff put you through, they easy find out. And you’d be… [Shakes head] There’s no way.
Researcher: Do boyfriends and girlfriends kiss?
Elizabeth*: No [Researcher: They don’t kiss?!] No. They get into trouble.
Some people related past experiences of having a relationship break up. Elizabeth*, for example, explained how she had to end a relationship with a previous boyfriend and become ‘just friends’, while Victoria* related: ‘when I was going out with this fella… One staff didn’t like it. Didn’t say why. Every time [my boyfriend] wanted to talk to me, [the staff member] used to pull him away.’ Kissing within the service was certainly not allowed:
Researcher: Are you allowed kiss in ___?
Victoria: No!! Sheesh! You’d be out like that! [Snaps fingers]
And kissing was not something that families seemed comfortable with either. For example, when asked: ‘What would your parents think of your boyfriends?’ Elizabeth responded: ‘Ah they’re happy with it.’ But when asked, ‘Would they be happy if they knew you were kissing?’ she admitted no.
Some people indicated that their relationships were being monitored. For example, one participant said: ‘Me brother have to come out with me [on dates] because … he has to watch us, just in case we might be up to something,’ while another participant talked about how, when her boyfriend came over, her mother would be in the next room.
Response to prohibition
This study found that participants appeared to respond to prohibitions against relationships in a variety of ways. Some accepted that family or staff did not want them to have relationships and spoke of relationships as something that were, in effect, taboo. For example, when one woman (who’d previously been in a relationship that had been broken up) was asked about boyfriends, she responded with a lot of ‘No’s’ and ‘Keep away from them!’
Other people responded to prohibition by engaging in relationships in secret. This notion of the need for secrecy was repeatedly stressed as participants wanted to avoid getting into trouble and they were afraid if staff or family found out about their relationships they would be broken up. For example, Brad* said: ‘What I heard is if you do it right—you have to go quiet, I mean quiet, that they won’t know.’ Another woman spoke of how she kissed her boyfriend without others knowing: ‘I watch and then, and then they won’t be looking at me.’
There were 2 to 3 individuals within the groups who had gone past the need for secrecy and had become more aware of their rights. Victoria*, for example, was aware that she was being treated differently because she had a disability: ‘Because … like we’re in ____, people think that we shouldn’t have boyfriends, we shouldn’t be doing this… it is hard, like ya know… It‘s discrimination.’ Another man said: ‘Sure it’s up to you, what you want to do. It’s not… They shouldn’t rule your life.’
What was promising was that as focus groups continued, more service users appeared to begin to question the fairness of restrictions that they’d previously taken for granted and they were enthusiastic that the research might lead to a change in this area of their life. However, they still had some way to go and were hampered by a lack of sexual knowledge, as well as a lack of belief in their own rights and lack of assertiveness skills to help them stand up for those rights.
The views and experiences presented here highlight that many people with learning disabilities have a desire for relationships and derive much enjoyment from such relationships. However, they currently face many barriers in this area of their lives. In part, such barriers are due to a lack of opportunities to socialise, which make meeting new people and forming new relationships difficult. But even more so, it is apparent that barriers arise because this is a challenging area for families and services, and thus far the dominant response to their concerns have has been to restrict people with learning disabilities’ access to relationships and sexual information.
As illustrated here, people with learning disabilities are continuing to engage in relationships in spite of such restrictions—but they are forced to do so in secret—and they are managing to pick up some sexual information from the television, but with many gaps in their knowledge and many questions that they need answered.
Working in the area of sexuality and intellectual disability is not easy. It is not easy to know how to balance the rights of people with learning disabilities with safety concerns. Staff and families want only what is best for people with learning disabilities, but fear of the dangers associated with sexuality, and discomfort in talking about it in a public way, make it difficult for the topic to be addressed.
One starting point for addressing the issue of sexuality and elarning disability is the systematic provision of relationships and sexuality education—the findings presented here demonstrate that such education is currently lacking. Such education could in many senses provide a starting point for discussing the more complex rights versus safety debate, as knowledge of sexuality would actually provide protection from abuse, unplanned pregnancy and sexually transmitted illnesses, whereas a lack of knowledge and secretive relationships are more likely to lead to such dangers.
Changes are beginning to happen in some services, with the drafting of personal relationship policies and implementing sex education programmes, but there is a lack of a coordinated national approach which means such measures remain inconsistent. Further dialogue between stakeholders in this area is crucial, and even prior to this, people with learning disabilities must be given information about their rights and supported in articulating them.