Just three percent of people with a learning disability live with a partner, recent research from Mencap established. My experiences across fifteen years at another national learning disability charity, Choice Support, mirror those identified by Mencap. I’ve encountered few participants living with a partner. Through our Supported Loving campaign we’re now sharing new research I’ve conducted into instances where people with learning disabilities have successfully been supported to find love and sexuality, what’s that achieved and how.
Insights from Supported Loving later, but it is worth reflecting first on previous studies into the impact safeguarding practises have had on relationships. At their strictest, they can result in policies and programmes which restrict sexuality, (Bernert, 2011). Support staff can pose a barrier to relationships for people with learning disabilities (Kelly et al., 2009).
One explanation for the restriction of relationships lays in safeguarding concerns around an increased vulnerability to abuse. Women with learning disabilities are also more likely to experience domestic violence (McCarthy et al., 2016). Such restrictions undeniably make it difficult for people with learning disabilities to find love.
The Human Rights Act ensured in law the right to a “private and family life”. The 2014 Care Act further supports this by classifying the development and maintenance of personal relationships as an ‘eligible support need’ due to its impact on wellbeing. There is a large body of research which highlights how important love is to individuals and people with learning disabilities are no different, equally valuing intimate relationships with a partner (Bates et al, 2016).
When Choice Support funded me to undertake a PhD I wanted my research to contribute something meaningful. Within my own life, I value the relationship I share with my husband and wanted to explore relationships for people with learning disabilities to understand what they value within intimate relationships.
Findings: 1) The Importance of Love
Everyone shared a human need to be with someone, to be wanted by someone and to feel special to someone. People valued companionship and having someone to share experiences with.
Joe: She’s [wife] a great person in my life, friendly, kind, funny. Fun to be with, I love you so much. So happy about the person I am married to, and also, she is my soul mate.
Some people expressed feeling lonely or feared being lonely, having a partner helped to alleviate this to some extent. It enabled them to enjoy typical ‘couples’ activities’ together such as meals out and the cinema.
Emma: Well, the thing that makes me happy being with someone is I would rather live with someone, a partner, than being on my own because I don’t like being on my own
Researcher: What’s good about having a boyfriend?
Mary: Sometimes I go and spend the night out or have lunch or something. Yeah cinema as well
For individuals who had minimal contact with family, their partner provided companionship and emotional closeness. It was touching that they were able to find this with each other following histories that included numerous rejections.
Caroline: That’s the thing we both have lots of time for each other as we do a lot of talking and everything
John: Caroline’s my friend, my best friend.
Everyone indicated that they enjoyed telling people they were in a relationship and there was a great pride in this. Relationships and marriage were traditionally ‘off limits’ for people with learning disabilities. Being part of a relationship suggested a sense of normality and being an ordinary member of society, also confirming that they, too, were special and wanted by someone.
Researcher: What does it feel like saying you are married?
Peter: I like it
Emma: Because it is nice telling your friends that you have a partner, especially, like, if they have one and now you have got one. Because you are letting them know that you have got one now [boyfriend]. So you are not left out.
Findings: 2) The importance of staff in supporting relationships for participants with learning disabilities
Staff played a central role in supporting people to develop and maintain relationships. Staff undertook a variety of roles. For people with more complex needs staff played the role of matchmaker.
Researcher: So you came back to the house. Did you sort of decide between you that you were going to be a couple?
Alan: No, not for some time. They wanted us to try it out, the staff did.
Researcher: Oh right. What the staff wanted you to try it out. What did they say?
Alan: They said how did you get on in X [date location]? And they said do you want to do it again
Sometimes staffed acted more like a friend, offering dating advice and relationship advice when couples experienced difficulty.
Emma: When he left, when he went back to his old place, I told the staff that I did fancy him and that I wanted to go out with him.
Caroline: If we say for instance we have an argument or something the staff would support us and would know what to do or say or whatever.
Almost everyone had experienced some form of abuse and staff played an active role in protecting them from further abuse. One person expressed how staff in a previous organisation did not intervene when his disclosed abuse from a partner.
John: She pulled my hair and took my CDs
Caroline: You complained about the staff not being particularly nice didn’t you where you were?
Staff also provided sexual advice, including to those who had experienced sexual abuse.
Kerry: Staff said that because he has them [warts] we must not undress or go naked when he has them. Because they said that I may catch them. So staff said that if we do it then he has to wear a condom. Yeah so I said to staff that I understand and all this.
Emma: Yeah they told me that to be careful with him [when asked if staff gave advice]
Researcher: What do you mean ‘careful’?
Emma: Like only do things [of a sexual nature] that you want to do.
Staff appeared to act as facilitators of the relationships by providing individuals with guidance and information, which enabled them to experience safe and happy relationships.
Developing the conversation
Many research findings are only shared within academic journals or conferences. We wanted to make sure that these findings are shared with people with learning disabilities and their staff. To this end, ‘Supported Loving’ now represents a national campaign to highlight the importance of good support to help people to have loving relationships. We want to get people discussing relationships and how support can be improved.
To find out more about the campaign please follow us on Facebook or Twitter
Bates, C., Terry, L. and Popple, K. (2016) Partner Selection for People with Intellectual Disabilities, Journal of Applied Research in Intellectual Disabilities, Early View.
Bernert, D.J. (2011) Sexuality and Disability in the Lives of Women with Intellectual Disabilities, Sexuality and Disability, 29: 129-141.
Kelly G., Crowley H. and Hamilton C. (2009) Rights, sexuality and relationships in Ireland: ‘It’d be nice to be kind of trusted”, British Journal of Learning Disabilities, 37: 308–315.
McCarthy M., Hunt S. and Milne-Skillman K. (2016) I Know it was Every Week, but I Can't be Sure if it was Every Day: Domestic Violence and Women with Learning Disabilities. Journal of Applied Research in Intellectual Disabilities (Early View).
Rushbrooke E., Murray C. and Townsend S. (2014) The Experiences of Intimate Relationships by People with Intellectual Disabilities: A Qualitative Study, Journal of Applied Research in Intellectual Disabilities, 27: 531–541.