No Room at the Inn? Older LGBT individuals’ unmet housing needs

Stonewall Housing, in conjunction with Age UK, Opening Doors London and Rainbow Hamlets, is holding a major Older LGBT Housing conference on 18th June 2014. Entitled ‘Bona Latties’ (Polari for Good Housing) it aims to give voice to older LGBT individuals’ housing wants and needs and create a space to discuss them with providers. Older LGBT unmet housing needs are a problem in the following ways:

  • Mainstream housing provision for older people is perceived as heteronormative, homophobic, biphobic and transphobic(1)(2)(3);
  • There is a lack of specialist housing, i.e. housing run for older LGBT individuals, by LGBT individuals (4)(5)(6);
  • There is a lack of specific housing choices for older LGBT, e.g. those who want gender specific housing (e.g. men/women only), which many older individuals, especially older lesbians, want (7). It’s an outdated ‘one size fits all’ (8) approach;
  • There is a lack of specialist domiciliary care for older LGBT people, with the exception of Pride in Care UK. Many older lesbians and gay men in particular re-closet themselves in their own homes, for fear of prejudice from carers (9);
  • There is a lack of services to support older LGBT in setting up housing cooperatives where they provide one another with reciprocal support and/or buy in care which is respectful of, and meets, their needs.

As a result of these unmet needs, older LGBT individuals are left with a stark choice: ‘the prospect either of living alone without support or having to enter [sheltered housing and] care homes which will not meet their needs.’ (10) We say ‘it gets better’ to younger LGBT people. And for many that may be true. But the sad the truth is that in older age it gets worse. As much as we should address the needs of LGBT youth, we also need to address the needs of older LGBT individuals as well. Schools are a problem for LGBT youth. Sheltered housing and care homes are a problem for LGBT older people. We must tackle both.

References

(1) Ward, R., Pugh, S. and Price, E. (2010) Don’t look back? Improving health and social care service delivery for older LGB users. London: EHRC;
(2) Fredriksen-Goldsen, K. I., et al (2013) ‘Physical and Mental Health of Transgender Older Adults: An At-Risk and Underserved Population.The Gerontologist doi: 10.1093/geront/gnt021First published online: March 27, 2013;
(3) Jones, R. (2010) ‘Troubles with bisexuality in health and social care.’ In Jones, Rebecca L. and Ward, Richard (eds) LGBT Issues: Looking beyond Categories. Policy and Practice in Health and Social Care, pp 42-55, Edinburgh: Dunedin Academic Press.
(4) Musingarimi, Primrose (2008). Housing Issues Affecting Older Gay, Lesbian and Bisexual People in the UK: A policy brief. London: The International Longevity Centre – UK (ILCUK)
(5) Carr, S. and Ross, P. (2013) Assessing current and future housing and support options for older LGB people. York: Joseph Rowntree Foundation.
(6) LGBT Movement Advancement Project (MAP) and Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders (SAGE) (2012) Improving the Lives of Transgender Older Adults: Recommendations for Policy and Practice. New York: Services and Advocacy for GLBT Elders and National Center for Transgender Equality.
(7) Westwood, S. (submitted): ‘“We see it as being Heterosexualised, being put into a Care Home”: Residential care concerns and preferences of ageing sexual minorities.’ Ageing and Society.
(8) Eaglesham, Phil (2010) ‘The Policy Maze and LGBT Issues: Does One Size Fit All?’, in R. Jones & R. Ward (eds) LGBT Issues: Looking Beyond Categories, pp 1-15. Edinburgh: Dunedin.
(9) Knocker, S. (2012) Perspectives on ageing lesbians, gay men and bisexuals. London: Joseph Rowntree Foundation.
(10) Guasp, A. (2011) Lesbian, gay and bisexual people in later life. London: Stonewall.

 

Empowering the Voices of LGBT Individuals with Dementia

A seminar in London organised by the Dementia Engagement and Empowerment Project (DEEP) and facilitated by myself, was attended by over 40 people this week, to discuss how we can give greater individual and collective voice to lesbians, gay, bisexual and trans (LGBT) people with dementia. Attendees included dementia service providers and advocates, older LGBT service providers and advocates, older LGBT people themselves, and academics working in the field of LGBT ageing and/or dementia. There were three excellent speakers: Rachael Litherland from DEEP; Sally Knocker (trainer, consultant and writer) and Dr Elizabeth Price (Senior Lecturer, University of Hull). Two short films were shown: one from Opening Doors London (which includes a gay men with memory problems in need of befriending and extra support) and a training clip from GenSilent (which features, among others, a gay couple dealing with one partner’s dementia; a lesbian couple pondering their future care needs; and a trans women who is dying, is estranged from her family, and lacks support). One of the most amazing things about the seminar was that it started without us! Many people arrived early, some by almost an hour, and struck up vibrant and deeply engaged conversations. These continued even after we introduced the planned bits of the seminar, and went on over the tea break, and into the group discussions which then followed.

LGBT individuals with dementia are not one homogenous group (1). As dementia is age-related and women outlive men, then older lesbians and bisexual women are likely to be disproportionately affected by dementia (women outnumber men with dementia 2:1) (2). This, together with relatively diminished social support in later life, means that older lesbians are likely to also be disproportionately represented in care homes for people with dementia. By contrast, gay and bisexual men who do find themselves in those spaces will be a minority in a minority due to both gender and sexuality. Many LGB people are impacted by the lack of recognition of LGB carers of someone with dementia (3) and of LGB health and social care service users, including in dementia provision (4). This is nuanced by gender: older women are particularly concerned about being around potentially sexually disinhibited behaviour of heterosexual men with dementia; and many older lesbians and gay men want integrated provision, but many also want gender and/or sexuality specific care. This is also nuanced by sexuality: many bisexual individuals suffer from the disappearing ‘B’ in LGBT (5), being assumed to be heterosexual if single or in a relationship with a person of another gender and being assumed to be lesbian or gay if in a relationship with someone of the same gender.

Trans individuals (who may or may not identify as LGB) are concerned with both shared and particular issues (6). Those particularities include: concerns about transphobia; being worried about not being able to cross-dress; being very concerned about receiving personal care if their physical bodies are not congruent with their gender performance; and, among those who have transitioned, being concerned that if they have dementia, as it progresses, they may no longer remember that they have transitioned, and may revert to performing according to the gender which they were assigned at birth.

A wide ranging number of themes emerged across the seminar. These included: the issue of how to ‘find’ LGBT people with dementia who may be hidden both by their dementia and by their sexualities and/or gender identities; the importance of making sure any project which aims to empower LGBT people with dementia is driven by LGBT people with dementia; concerns about heteronormativity, homophobia, biphobia and transphobia among dementia service providers and dementia service users; the importance of training and practice development among service providers (7); the importance of both mainstream providers and the LGBT ‘community’ taking responsibility for addressing these concerns; and the need to take into account the needs of queer/polyamorous/non-labelling individuals with dementia who can often be hidden in generic LGBT discourse.

All attending the seminar were agreed that it was a very successful and stimulating event, and hopefully would lead on to the development of a number of different projects which will give greater voice to LGBT individuals with dementia in the future. A range of possibilities were discussed, including making mainstream dementia advocacy more inclusive of LGBT individuals with dementia, and LGBT intergenerational projects, which would involve LGBT befrienders supporting LGBT individuals with dementia. DEEP will be keeping all those who attended informed in future developments. Anyone wishing to know more, should contact the Dementia Engagement and Empowerment Project (DEEP)

(1) Newman, R. and Price, E. (2012) ‘Meeting the Needs of LGBT People Affected by Dementia,’ in R. Ward, I. Rivers & M. Sutherland Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, pp183- 195, London: Jessica Kingsley. [Accessible via: http://bit.ly/1dGiQCb]

(2) Knapp, Martin, et al. (2007) Dementia UK: a Report to the Alzheimer’s Society. London: Alzheimer‘s Society.

(3) Price, E. (2012) ‘Gay and lesbian carers: ageing in the shadow of dementia’, Ageing & Society, 32: 516-532.

(4) Ward, R., River, I. & Sutherland, M. (eds) (2012) Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, London: Jessica Kingsley

(5) Jones, R. (2010) ‘Troubles with bisexuality in health and social care.’, in: Jones, Rebecca L. and Ward, Richard (eds) LGBT Issues: Looking beyond Categories. Policy and Practice in Health and Social Care (10), pp 42-55, Edinburgh: Dunedin Academic Press, pp. 42–55.

(6) Auldridge, A., et al (2012) Improving the Lives of Transgender Older Adults: Recommendations for Policy and Practice. New York: Services and Advocacy for GLBT Elders and National Center for Transgender Equality

(7) Suffolk Lesbian, Gay, Bisexual and Transgender Network (2012) Providing Quality Care to LGBT Clients with Dementia in Suffolk: A Guide for Practitioners; Alzheimer’s Society (2013) Supporting lesbian, gay and bisexual people with dementia. Alzheimer’s Society Factsheet 480. London: Alzheimer’s Society:

Sexual identity and care home provision: some reflections on the research process

My colleagues and I at Swansea University have recently completed a mixed-methods study into the provision of inclusive care to older lesbian, gay and bisexual (LGB) people in residential and nursing care environments in Wales – an elongated title for saying, ‘how well are older LGB recognised and cared for in care homes?’ We know from the literature that heterosexism in residential care provision can mask the sexual health needs, diversity and desires of older LGB residents. Prior research from Australia and the United States has identified institutional and historical barriers that prevent older people ‘coming out’, or identifying as LGB to care providers (Barrett, 2008; Jackson, Johnson & Roberts, 2008; Knockel, Quam & Croghan, 2010; Tolley & Ranzijn, 2006). Our research was funded by the National Institute for Social Care and Health Research (NISCHR) and had a unique focus on Wales as a UK nation with devolved responsibility for providing health and social care to its citizens, including older people. Residential and nursing homes (private and local authority-owned) from across Wales took part. Two methods were used to gather staff perspectives on inclusive care —self-completed questionnaires (121 respondents), and focus groups with care staff and managers (5 groups) from 32 organisations. Other methods included: content analysis of Care and Social Services Inspectorate Wales (CSSIW) Inspection reports (383 reports) to identify content pertaining to sexuality, sexual health and LGB identities; and, semi-structured interviews with 29 older LGB-identifying adults about their hopes and expectations for future care. The final report is available online and provides an overview of the key findings and recommendations: http://www.swan.ac.uk/humanandhealthsciences/research/research-impact/lgb-residential-care-report/

What follows are some brief reflections on the process of involving care organisations in the research – reflective comments on the research process that do not always make the final edit of reports and papers but may help steer future research in this domain.

Willingness to participate and learn – We initially anticipated that seeking care home participation would be the biggest challenge in recruitment because of the politically-charged nature of the topic and our concern that staff and managers would interpret our research endeavours as a critical appraisal of their practice.  Instead, we were struck by the enthusiasm of staff and managers to participate. Using a random sampling method, we invited 51 organisations to participate with 19 declining. Most of these homes declined because of impeding closures that created logistical barriers to their involvement. For some staff groups, participation in a focus group was framed as an informal learning opportunity into an area that receives little time and attention, an unexpected but positive outcome. Across focus groups, there was general agreement of a ‘need to know more’ about sexual difference and LGB histories. Participating staff members conveyed an awareness of progressive shifts in legislation and social attitudes but in equal measures expressed a willingness to be more mindful of the sexual biographies of residents in their care.

Sexuality, dementia and everyday care – While our research focused on sexual identity and social inclusion, a connected and equally pertinent topic that frequently emerged in focus groups was the complexity of balancing issues of sexual expression, dementia and informed consent. Staff elaborated on the challenges of negotiating sexual relationships and intimate contact between residents with declining mental capacity alongside responding to the often divided opinions of family members. Listening to these accounts of complex care deepened our appreciation for staff members’ commitment to respecting the rights and choices of residents in their care and to continually ‘do the right thing’. It also brought home the ethical complexity of providing care in these settings for employees who were in receipt of a low financial reward just above the minimal wage with little professional recognition.

Missing voices from the research – Staff views and accounts conveyed through the research represent predominantly White perspectives. The majority of participating staff and mangers were white, heterosexual women born in Wales and of mainly Christian background. This clearly did not match our observations of staffing groups when entering homes – we noticed many participating homes employed staff from black and ethnically diverse groups, including individuals from African and Asian migrant communities. We were limited to the staff available to speak to us between rotating shifts and group membership was often facilitated by senior staff members operating as ‘gatekeepers’ for their organisations. It is difficult to pinpoint whether individual staff from migrant and ethnically diverse communities opted not to participate for personal or religious reasons or whether they were not approached to participate; we can only speculate about possible barriers to participation. Ethical requirements prevented us from actively approaching individual staff to participate. Finally, we did not anticipate the eagerness of ancillary staff members (such as cleaners, kitchen staff etc.) to have a say in the research. It became increasingly clear that their various duties involved regular contact with residents and their views were of equal importance in the provision of inclusive care. We confess to underestimating the validity and contribution of these staff members’ perspectives; food for thought for future research.

I hope the above reflections are of some benefit to other researchers and practitioners engaged in research in an area of increasing interest. Putting these observations to paper has been valuable for me in capturing the often sidelined messages about research into organisations providing care to others.

Barrett, C. (2008). My People: A project exploring the experiences of gay, lesbian, bisexual, transgender and intersex seniors in aged-care services Retrieved 16th October 2009, from http://www.matrixguildvic.org.au/MyPeopleReport2008.pdf

Jackson, N.C., Johnson, M.J. & Roberts, R. (2008). The potential impact of discrimination: fears of older gays, lesbians, bisexuals and transgender individuals living in small- to moderate-sized cities on long-term health care. Journal of Homosexuality, 54(3), 325-339.

Knockel, K.A., Quam, J.K. & Corghan, C.F. (2011). Are Old Lesbian and Gay People Well Served? Understanding the Perceptions, Preparation, and Experiences of Aging Services Providers. Journal of Applied Gerontology, 30(3), 370-389.

Tolley, C. & Ranzijn, R. (2006). Predictors of heteronormativity in residential aged care facilities. Australasian Journal on Ageing, 25(4), 209-214.

About the author: Paul Willis is Senior Lecturer in social work in the College of Human and Health Sciences at Swansea University. His research interests include ageing, sexuality and social care; wellbeing and identity construction of LGBT youth; and social inclusion in organisations. Email: P.B.Willis@swansea.ac.uk

‘Care and Technology’ by Helen Carr

Last month I attended the 4S conference in San Diego, (the Society for Social Studies of Science in case you were wondering) along with about 1000 others.  Whilst I heard some good papers – I particularly enjoyed the panel on Calculating City Life: A Socio-Material Perspective to Low-Budget Urbanity which included papers on ride sharing and ecosan communities – I was struck, and disappointed, by the very limited focus on gender, sexuality and caring. The title (and what a great title) No Space for Old Women: Transformations in Healthcare Work was promising, but the presentation concerned women who had become nurses in the 70’s and who now felt edged out of the profession by the increasingly technological nature of their work. Interesting stuff, but, as far as I could tell, the feminism that was promised in the introduction to the paper, lay in the fact that the research subjects were women. This is perhaps unfair; when I read the full paper (and I promise I will) it may be more developed. I was amused though, when I asked the presenter to expand upon her feminist perspective, I was answered by a young man in the audience who told me it was self evident.  Women who entered work in the 1970s were all feminist pioneers apparently, since most women stayed at home and looked after their families.  It was hard to restrain myself from replying, ‘young man, I don’t think you are in a position to lecture me about feminism in the 1970s’ but I just about managed!

Many papers were concerned with surveillance, and the consequences of technology on our freedoms. Whilst these are important and topical concerns, there was a tendency to rehearse traditional liberal arguments, treating the state as one homogenous entity and technology as irredeemably bad. There was little deviation from this perspective, and I got the feeling that if someone said, well perhaps some communities want more surveillance, or technology can be a force for good, they would have been shouted down.  Moreover the panels were very gendered.  Young men, strutting their stuff, and congratulating themselves and each other on their (very similar) insights.  What a pleasure it was to hear Evelyn Ruppert from Goldsmiths introduce her empirical work on statisticians in the European Union and explain how people and institutions deploy ‘technologies of trust’ to give legitimacy to unstable and contested political projects such as the notion of Europe. Her ideas felt very productive to me.

Of course this is just a snap shot of the panels I went to.  It could just be that I made really poor choices (although I did comb the programme for references to care).  And I should probably have gone to ‘Feminist Postcolonial Science Studies: What are the Issues?’, chaired by Sandra Harding and Banu Subramaniam, but how could I resist a paper on baboons apparently making pets out of kidnapped feral dogs (for those of you interested here is the Youtube link http://www.youtube.com/watch?v=U2lSZPTa3ho – one million hits and rising!) which was on at the same time.  Just in case there is any doubt, as a result of that choice, as to my academic engagement, I would point out that I chose the paper on no-flush toilets over and above ‘Scotch Malt Whisky Tasting and Subjectivity Science in the Making: A Participatory Experiment’ where apparently the first 60 delegates got a whisky sample!

I reached two conclusions following the conference.  First, and this is a bit self-congratulatory, how much more productive was our workshop in Adelaide, when a wide range of papers were delivered, across our themes, and where the discussion was critical, constructive and engaged.  The workshop format really seems to work to develop shared intellectual capital in a positive and enjoyable way.

The second is to reflect on the contemporary importance of the relationship between care and technology which seems to be undertheorised.  I would suggest that once we start thinking about technology from the perspective of care, then the ambivalence of technology becomes apparent. Whilst I was in Adelaide, I had dinner with a woman who was originally from London. Her father was in a home in London and had a tendency to wander.  He was given a walking stick with a GPS tracing device, and she was able to follow his wanderings round London on her computer. Is technology in this instance increasing or decreasing her father’s autonomy, well being, dignity and privacy? What does it do to our understanding of family, and of rights and obligations? The invention of super-absorbent sheeting can be liberating, but can also be undignified and lead to a life isolated from human contact. Is it caring to be able to provide them to someone who is functionally, although not medically incontinent? Is technology absolving us of our responsibility to care? There is a huge amount to think about so it may be that the 4S conference would be a great place for our Revaluing Care network to squat, or at least to make its presence felt. So is anyone up for a panel or two in Buenos Aires August next year? Or perhaps more realistically at the European Association for the Study of Science and Technology in Torun Poland in September 2014?

Helen Carr, Reader in Law,

Kent Law School: http://www.kent.ac.uk/law/people/academic/Carr,_Helen.html

‘Who cares?’ By Dr Andrew King

It’s been National Carers Week in the UK recently. It’s been well publicised in mainstream and social media, even receiving its own twitter hashtag #carersweek. I’ve read some heart-wrenching and indeed heart-warming stories and learned some useful facts, such as those provided by ONS from Census data. There has rightly been a discussion of hidden carers.  Yet despite this, I have seen very little, indeed next to nothing, about informal caring relationships that take place between lesbian, gay and/or bisexual people (LGB). Unfortunately, this sort of invisibility and implicit heterosexism is nothing new. There is a growing body of literature, including academic, third sector and activist generated studies that points to the invisibility of older LGB people in general and older LGB carers in particular. There are some on-going and important projects which have tried to increase the visibility of older LGB people and their needs, such as Age UKs excellent ‘Opening Doors’ and work in public sector organisations, and projects about specific issues like end-of-life care.

Yet research, including my own, demonstrates that caring relationships amongst older LGB people, what we might refer to as informal care relationships within chosen networks, or ‘families of choice’ (Weeks et al., 2001; Weston, 1991) are both very important and diverse, more so than heterosexual people’s. Research shows that older LGB people rely more on friends and partners for support in later life. But it’s important not to simplify and to capture the levels of complexity that are apparent in older LGB people’s lived experiences of informal care. It’s why I think a relational approach is needed because it shows that roles and identities such as carer and care recipient are rather too simplistic. I discuss this approach further in a chapter I’ve written in a forthcoming book ‘Mapping Intimacies’. To give you an idea of what I mean, here is the story of two older gay men, Alec and Peter.

Alec and Peter first met in the late 1970s. Peter supported Alec physically, emotionally and financially. For instance Peter helped Alec visit various private doctors and specialists, obtaining better care for him, until his underlying medical condition was stabilised; he nursed him when he was particularly ill; he helped him cope with the psychological stress of his chronic illness; and when Alec had to retire early on health grounds, Peter continued to support him financially. Hence, it would appear that Peter has for many years taken the role and identity of being Alec’s carer. However, when they first met Peter was struggling to come to terms with his sexuality. He felt that his family, particularly his father, did not understand his sexuality and would not accept it. Dealing with this led him to a local lesbian and gay support network where he met Alec. He helped Peter to accept his sexuality and viewed in this way, he can be seen as caring for Peter psychologically, whilst Peter tried to support Alec with his chronic illness. Recently, Alec has suffered from further ill health and Peter, although continuing to work, has also suffered periods of illness. Peter is learning to cope with Alec’s increasing infirmity, whilst Alec faces coping with Peter’s growing depressions and frustrations.

So, let’s see much more of presence of carers who are not heterosexual in the next Carers Week, but let’s not forget that the distinction between carer and cared for is also complex, especially when we look at the experiences of communities who have traditionally (and still are) invisible and marginalised!

Weeks J, Heaphy B and Donovan C. (2001) Same-Sex Intimacies: Families of Choice and Other Life Experiments, London: Routledge.

Weston K. (1991) Families We Chose: Lesbians, Gays, Kinship, New York: Columbia University Press.