Author: Claire Bates
The importance of good support in making and maintaining relationships
"The power of love, a force from above, cleaning my soul, flame on burn desire, love with tongues of fire, purge the soul, make love your goal"
Frankie Goes to Hollywood (1984)
Love is powerful.
Love has the power to produce such immense states of joy, rage, passion and sadness within us. The depths of emotion that love can induce are immortalised throughout history in cultural narratives covering all forms of creative expression; from novels (Wurthering Heights), to poetry (She walks in beauty), plays (Romeo and Juliet), motion pictures (Gone with the Wind), music (Love me tender), physical artworks (The Kiss) and television shows (soaps such as Eastenders). Considering how love is portrayed across all mediums, how are people with learning disabilities represented within these cultural narratives?
They’re not, but their absence is sadly not a surprise. In 2016, Mencap highlighted that just 3% of people with a learning disability live with a partner but there is clear evidence indicating that people with learning disabilities want what most people want, somebody to love (Kelly et al. 2009; Rushbrook et al. 2014, Bates et al. 2016). Many people who need support to make and maintain loving relationships are failing to experience the emotional highs and lows that being in a romantic relationship can produce.
I started by PhD in 2009 while working at Choice Support, I wanted to ensure that the topic I chose was important to me as it was going to be taking over my life for the foreseeable future. I thought about I valued most in my life and this was the relationship I share with my husband; the intimate bond and catalogue of shared experiences we have accumulated over the past decade together.
I wanted to explore this with people with learning disabilities, asking what characteristics and attributes they desired in a romantic partner and sought to understand how these choices shaped their experiences. I knew a number of people who receive support in long term happy relationships at Choice Support but it was unethical to conduct this research within my own organisation so I interviewed eleven people with learning disabilities over several weeks supported by two other social care providers.
All people interviewed had a partner and it was hard to convey just how much that person meant to them. The depth of love expressed towards their partners and value attributed to having someone to share their lives with was no different to how I feel about my husband. Throughout the interviews I only included the experiences of people themselves and support staff were not included. However, what became clear from their accounts was the role the support staff played in the development and maintenance of relationships for people. It was clear that without good support from staff, many people would not have found love or may have had difficulty sustaining a long term relationship.
The PhD highlighted not just the importance of good support from staff around relationships but also the vast array of roles support staff were undertaking. The quotes below show the assortment of roles staff undertook as part of their job as a support worker. I know from my professional experience, both at Choice Support and in other organisations, that staff undertake similar roles so this is not unique to just a few providers.
Relationship Counsellor: “If we say for instance we have an argument or something the staff would support us and would know what to do or say.”
Friend: “I told the staff that I did fancy him and that I wanted to go out with him.”
Sexual Health Advisor: “Staff said that because he has 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.”
Protector: “Staff asked me and said ‘are you sure about this and you won’t hurt Emma? And I said ‘Emma knows me and I love her’ and we had a really good chat.”
Parent: “I went to the staff to see if I could actually sleep with him to see if it is alright.”
Matchmaker: “Staff said how did you get on in town [where he went on his date]? They said do you want to do it again?”
For people without a disability, many of the roles above would possibly be fulfilled by friends, colleagues, maybe a counsellor or therapist or sexual health nurse. Research has shown that people with learning disabilities are frequently isolated (Stacey and Edwards, 2013) and may not have the same social networks as members of the wider community and times of austerity have reduced the availability of psychological therapies, especially for people with learning disabilities.
Staff were providing advice on sensitive and emotive topics, for example three women had experienced sexual abuse and staff were supporting them either emotionally or practically (such as providing sexual health advice), to start a new sexual relationship with a partner. Staff assume these roles but the quality of the support they provide is dependent on factors such as knowledge, personal and organisational values. Based on what the people told me in interviews, overall they received supportive and appropriate support from staff regarding relationships.
The organisations that took part were considered to have sound values and ethics and were considered ‘good’ social care providers. I expected staff within these organisations to have sound values, be person-centred and encourage and champion individual’s rights and relationships. However, based on research we know this is not the case within all support provider organisations, and even within my research there were elements of practice that could be improved regarding relationship support.
Coming from a social care background, I was determined that the research would have a practical application and the findings not be confined to peer review journal read predominantly by other academics. The target audience included front line staff and managers and people who use services themselves who were unlikely to read academic journals. I wanted to make sure the message about the importance of good support was heard by those who can help make a difference to the lives of people with disabilities. I also wanted to engage directly with people who use services to make sure people knew their rights in this area and highlight the types of poor support they should not tolerate.
And so ‘Supported Loving’ was born.
The name ‘Supported Loving’ came from a reoccurring typo in my PhD thesis, I meant to say supported living. The typo summed up the aim of the campaign perfectly, which is to share what people with disabilities think makes good and poor support around relationships.
Choice Support hopes that, in the words of Frankie goes to Hollywood, this helps support providers to be committed to ‘making love their goal’ for the people they work for and that people, if they want to find love, have the best chance of achieving this. Choice Support wants Supported Loving to accomplish this by obtaining direct feedback from the experts: people with learning disabilities who receive support around relationships.
We want people with learning disabilities to tell us:
- What good support people have received that has helped people to find or have a relationship
- What poor support have people received that has made it difficult to find or have a relationship
People can either send us a photo and their story, or record themselves on camera, telling us what makes good or poor support and send this by email to: Claire.firstname.lastname@example.org.
We also want to hear what other support providers are doing in this important area – they can contact me by email at: Claire.email@example.com and we will be happy to share this as part of the campaign.
We will also have a monthly blog with a wide range of contributors from a diverse range of organisations, all focusing on the topic of support for people with learning disabilities in relationships. We would greatly appreciate any organisation or individual who would like to contribute to this, writing from their own perspective on the theme of support within relationships.
Bates C, Terry L and Popple K (2016) Partner Selection for People with Intellectual Disabilities, Journal of Applied Research in Intellectual Disabilities, Early View.
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.
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.
Stacey J and Edwards A (2013) Resisting Loneliness’ dark pit: a narrative therapy approach. Tizard Learning Disability Review, 18: 20-27.
The publisher is the Centre for Welfare Reform.
Supported Loving © Claire Bates 2016.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.