Love in a Cold Climate: Changes in the Fortunes of LGBT Men and Women with Learning

Love in a Cold Climate: changes in the fortunes of LGBT men and women with learning disabilities?

Accessible summary

• This paper goes back to look at some research which was about gay, lesbian, bisexual and transgender (LGBT) people with learning disabilities.
• Have things got better or worse for LGBT people since this research was done?
• It is hard to say if things have changed because we still do not know very much about the experiences of LGBT people with learning disabilities themselves.

Key words

LGBT; sexuality; impact of research; post-Valuing People

Summary

'Secret Loves, Hidden Lives?' was a piece of research which explored the lives and loves of gay, lesbian and bisexual people with learning disabilities. The research arguably influenced the development of policy in that same sex relationships were subsequently mentioned in English government policy on learning disability. The research had an extensive programme of dissemination and whilst no systematic attempt was made to measure the impact of the dissemination or the research, this paper suggests ways in which the research might (or might not) have made a difference in relation to: telling untold stories, supporting front line workers with practical resources, challenging negative assumptions held by staff in services and putting LGBT people with learning disabilities in touch with each other. The paper also considers work which was left undone and reflects on the opportunities to support LGBT people with learning disabilities in the current context of financial austerity.

Introduction

The intersection of disability and sexuality has often been constructed as problematic (largely by non-disabled people) and although there is important literature about the sexuality of disabled people generally (see Brown et al. 2000, Liddiard 2014, Shakespeare 2000, for example) and literature on the heterosexuality of people with learning disabilities (see Craft 1994, for example), there is less work with a specific focus on lesbian, gay, bisexual and transgendered (LGBT) men and women with learning disabilities (although for a perspective from the USA, see Allen 2003, from the Netherlands, see Stoffelen et al. 2013 and from Sweden, see Lofgren-Martenson 2012). Authors points to the almost total invisibility of knowledge or research about lesbian sexuality for women with learning disabilities (McCarthy 1999; Burns & Davies 2011).

It is arguable - but from a largely anecdotal perspective – that LGBT people with learning disabilities may fare badly because of the combination of facing discrimination in their everyday daily lives (Lemos & Crane 2012; Mencap 1999; Williams 1995) coupled by a lack of acceptance of their sexuality in the learning disability community and lack of acceptance of their disability in the LGBT community. Family, friends, supporters and professionals may, or may not, support the right of a person with a learning disability to have sexual and intimate relationships but may have reservations if they want same sex relationships (Carson & Docherty 2002). Jones (1995) explored the ways in which services for people with learning disabilities supported people who were, or might be, gay, lesbian or bisexual. Her findings showed that staff did not always have the skills, knowledge or experience to do this. In a survey of staff with direct contact with people with learning disabilities in five large, English service provider organisations 76% of staff interviewed said that they would support a person with learning disabilities to develop a heterosexual relationship, whilst only 41% said they would do the same for a same sex relationship (Clarke & Finnegan 2005).

In this context I led a research study in 2005 which sought to foreground the experiences of LGBT people with learning disabilities (Abbott & Howarth 2005a). This paper briefly describes the study but, in the spirit of this special edition, focuses on trying to pinpoint areas in which the study may or may not have made a difference to policy or practice – and discusses some of the challenges associated with trying to achieve a degree of impact with the research and change the lives of LGBT people with learning disabilities for the better.

The research study: Secret Loves, Hidden Lives?

In 2001 a day centre in Bristol contacted a local trainer with a known background in learning disability, equalities and sexuality. One of the day centre users was unhappy that his gay friend was being bullied and called names. The day centre staff responded by contacting the trainer and asking her if she could do some one-to-one work with the person being bullied (interesting in and of itself). The trainer decided a better approach would be to meet the person but to focus on training the staff to respond to the issue. To prepare for the training she tried to find stories from LGBT people with learning disabilities to use as a training resource. She found none – nor any published research and subsequently got in touch with the University of Bristol. Together we secured a small pot of money to scope the issues, think about the methodology and do two pilot interviews with a gay man and a lesbian with learning disabilities. We wrote a subsequent research bid which was a collaboration between us at the Norah Fry Research Centre, University of Bristol with Terrence Higgins Trust (THT) and REGARD (the national organisation of gay, lesbian and bisexual disabled people). The three year study (2002-2005), funded by the Big Lottery Fund, aimed to: find out more about the experiences of gay, lesbian and bisexual men and women with learning disabilities; explore what kinds of barriers or prejudice they encountered; to see how they had been supported (or not) by the services and professionals with whom they were involved; and identify ideas, and then produce resources, for training and policy development.

The research had three stages:

1.Interviews with 71 staff in 20 learning disability services across the UK about their views and experiences of working with people with learning disabilities who were, or may have been, gay, lesbian or bisexual.

2.Interviews with 20 women and men with learning disabilities who were having, or wanted to have, a same sex relationship.

3.The production of resources for people with learning disabilities and staff, namely photo stories which drew on the research findings (Abbott & Howarth 2005b).

Our headline research findings made for a relative gloomy read and we concluded that the mental, emotional and sexual health of people with learning disabilitieswho are gay, lesbian and bisexual was being jeopardised by the failure of many services to meet their duty of care in this area (Abbott & Howarth 2005a, 2005b; Abbott & Burns 2007; Abbott & Howarth 2007; Abbott 2013). Significant barriers were put in the way of people with learning disabilitiesexercising their human rights to consenting same sex relationships. Reported levels of bullying and discrimination as a result of being LGBT were high and half of the respondents said that they had been abused by strangers on the street or on public transport. In addition, accounts of mental distress and isolation featured strongly in respondents’ narratives including accounts of self-injury and suicide attempts. People wanted support to meet other gay, lesbian and bisexual people, go to pubs and clubs and groups and find boyfriends and girlfriends. However, the gay scene was felt by many to be unwelcoming and staff were often reluctant to see this work as part of their jobs.

Our interviews with staff in services revealed a reluctance to proactively raise issues of sexuality either in group or one-to-one settings (although a small number of staff in a minority of services did engage with the topic in a more concerted way). Staff reported their anxieties about doing work in this area and related them to: a perceived lack of experience and confidence; an absence of policy and training provision; their own sometimes prejudicial attitudes about LGBT people; and concerns about the possibility of negative reactions of other people including parents, carers and other colleagues. Most, but not all, gay, lesbian and bisexual staff were out to some colleagues but very few were out to the people with learning disabilities they worked with. The overwhelming majority of staff said that they knew gay and bisexual men with learning disabilities whilst fewer claimed to know lesbian and bisexual women with learning disabilities.

Unsurprisingly, amidst all the obstacles the men and women with learning disabilities in our study said that their main aspiration was to find a partner to fall in love with and to have more contact with other LGBT people. Despite the many messages telling men and women with learning difficulties that it was a problem for them to be who they were or wanted to be, they were nonetheless striving to lead much more satisfying emotional and sexual lives.

Disseminating the research and trying to bring about change

We had a fairly extensive dissemination strategy to launch our main report (Abbott & Howarth 2005a), a widely circulated executive summary and our photo stories (Abbott & Howarth 2005b). We gave papers at over fifteen conference and workshop events in England, Scotland, Wales, Ireland, Sweden and the USA to a range of audiences: disability, sexuality, equality, human rights. Although a small number of the events were academic conferences, the majority were for practitioners. In these presentations we gave headline findings, told some of the stories of our participants and asked the attendees to think about the consequences for their own practice. We found that three aspects of our overall findings tended to have the most effect. The first was to foreground the ‘love issue’ i.e. that LGBT people with learning disabilities wanted to love and be loved. This often disarmed hostile, prejudicial or uncertain views – claims about wanting love end up being fairly unassailable. The second was to use a photo of a dilapidated shed alongside a short quote from one of the research’s professional participants who worked in a day centre:

The local day centre found a couple having sex in the shed and guess what the day centre did to deal with the problem? They took down the shed. I think that says it all, doesn’t it?

The third aspect was, using another example from the research, to get heterosexual attendees to think about how often they ‘came out’ as heterosexual in their work places, in front of service users/people with learning disabilities, and how this ‘coming out’ was perceived as neither problematic nor noticeable. In feedback most participants highlighted that the idea of heterosexual staff outing themselves all the time was interesting and instructive. In the practitioner focused conferences a sizeable proportion of the largely female attendees were engaged and willing to join in with small group discussions. It was also the case that at each event a number of staff seemed disinterested and unwilling to take part in group discussions or contribute views such that we wondered if they had been told to attend by managers.

In making a series of photo books as part of the range of our end of study resources (Abbott & Howarth 2005b) we worked with a local theatre company of people with learning disabilities with whom we had a good pre-existing relationship. However the topic of the research caused great difficulty with some of the actors who said that they did not approve of homosexuality. Some refused to take part and some said that their parents would not let them take part. There were in depth discussions between the actors and the theatre company’s Director about the nature of acting and being in roles that did not always sit comfortably, but in the end some people refused to join in. Of course there is no reason to assume that some people with learning disabilities would not also hold homophobic views in common with other sections of society.

In our dissemination activities it became clear that the range of social care professionals working with people with learning disabilities was diverse and disparate. Most disabled people do not have on-going or significant relationships with social workers and day centre closures mean that most interaction is now likely to be with support workers and personal assistants. Whilst these relationships may (or may not) be based upon relatively formal role profiles, what actually goes on in the support relationship is largely private and unknown. It begged the question that in terms of the social care sector, who exactly would have this issue on their radar and whether or not we were presenting the research to an audience who would actually be able to make very much difference themselves?

In terms of making an impact in the LGBT community, our research found that most (though not all) of the LGBT participants found the gay scene unwelcoming and some had actually been refused entry to gay venues. The commercial gay scene is predominantly ‘body fascist’ (Wood 2004) and unwelcoming of diversity whilst at the time of publishing the research the political and campaigning part of the LGBT movement was more focused on equality issues that pertained to marriage, adoption, employment etc. Whilst our research collaboration was with REGARD and THT, REGARD was largely made up of people with physical disabilities and they were dealing with their funding being in a precarious situation. The original individual at THT who had been very committed to the work left THT before the research commenced and thereafter the organisation did not view the work as a priority. I make these points only to suggest that we failed to embed the issue within the LGBT sector so that once the dissemination was finished we felt that no-one (apart from ourselves) really had the issue squarely on their radar.

Shortcomings in the research

Our research had some limitations which future studies might address. It may have been that we assumed too much homogeneity between ‘L’, ‘G’, ‘B’ and ‘T’. There were some subtle but important differences in accounts from men as opposed to women, for example. There were also clear differences pertaining to age, ethnicity, living situation, nature of impairment and proximity to large urban centres with identifiable gay populations. We did not include anyone with profound and multiple learning disabilities in the study (although we did include people with little or no verbal communication). We did not interview any transgender people with learning disabilities (although one of our research advisors with learning disabilities was transgender). We came to see that issues of gender identity appeared in significant ways in some of the interviews and we could at the time find no other relevant research or literature on this topic (since when see, Wilson 2006). These seemed to be complex and worthy of a study in its own right. So for example, some gay men with learning disabilities said that they would like to be female so that it would then become safe and legitimate to have relationships with men, and some lesbians in the study said they would like to become men so that they would be less likely to be sexually abused and/or exploited by men. In addition, there were other issues of sexual expression that we did not explore or write about in much detail e.g. cross dressing, access to pornography and sexual fetishes and about which research and literature is still rare (Cambridge 2013).

Methodologically and from an ethical point of view, one off visits to participants were less than ideal. We felt extremely conscious about leaving some people at the end of the interview and this was particularly true for those who were geographically isolated as well as socially isolated. The majority of the interviews were long by ordinary standards and we were especially careful to bring information for people about local sources of support. We also had the resources to pay for four sessions of counselling for anyone who said they would like that. But some people were not living anywhere near local support and would have found it difficult to access counselling without worrying that some staff whom they were not out to would want to know why they were doing so. Some interviews were, frankly, harrowing and difficult to leave behind physically or psychologically. We also had to ask ourselves difficult questions when some of the respondents wanted to maintain relationships with us. The tensions in establishing a friendly relationship in a research interview whilst not offering ongoing friendship have been written about by others (e.g. Hall 2009; Riddell et al. 1998) and we did make clear to respondents that we would only be meeting once. A small number of people continued to telephone us and send us greetings cards after the interview and we did in fact maintain some contact for a short time as we felt that the interview had raised issues for some people that required us to continue to suggest and explore options for local support.