Introduction
Care is universal. Everyone receives care at some point during their life, whether as an infant or in old age, and many people provide it in some form or another, however informally. Yet the reality of care – how it is experienced and accessed by those who need it – can be far from universal. Existing forms of social discrimination, such as homophobia, biphobia and transphobia, can often find their way into the world of elder care. Access to care may also be shaped by social factors such as isolation and illness, which tend to be experienced unevenly across society.
A report by LGBT Health and Wellbeing last year (2023) found that 90 per cent of the older LGBT+ people in Scotland surveyed were worried about experiencing discrimination if they had to move into a residential care home.[i] 85 per cent of respondents were worried that doing so would isolate them from the LGBT community. There currently exists no specialised LGBT care facilities in Scotland.[ii] While elder care has the potential to enrich lives and communities, it can also serve as a meeting point for the different vulnerabilities that arise from social stigma, and the limitations to personal autonomy that recipients of care can experience. Care may be universal, but the forms in which it is experienced often reflect wider social divisions and inequities.
Scotland’s population is getting older, bringing the question of elder care into sharp focus. The number of over 65s in Scotland is expected to grow by one-third by 2045, while the number of over 85s is expected to almost double by 2051.[iii] If Scotland is to thrive in old age, the organisation of care, and particularly the barriers to its access, will be of enormous importance in the decades to come.
This article examines the experience of care, including the potential barriers that can arise in concert with sexuality-based discrimination, at three different levels: informal, family-based care, social care, and care within communities. Despite being a public necessity – a force that sustains huge swathes of the population and effectively keeps the world turning – care often takes place in the less visible areas of society, in peoples’ homes and residential facilities. To what extent is care a common good – the ‘reciprocal, relationship-based underpinning of all human society’[iv] as described by researchers at Common Weal – and what conditions are preventing it from being so?
Family
Most families involve dynamics of care giving and receiving. It is currently estimated that there are 800,000 unpaid carers in Scotland[v] and 5.7 million across the UK,[vi] although the true numbers are unknown given that many people who provide care to family and friends often do not think of themselves as ‘carers’ in a strict sense. These figures suggest that the family unit remains ‘a vital part of our care infrastructure’,[vii] as argued by care researcher, Emily Kenway. Where care is provided beyond the family – whether by care workers attending a person’s home, or within residential care facilities – provision is often organised by family members, whose advocacy and support can play a role in the types and quality of care received.
Family is therefore a key mediator of elder care, but the history of queer sexualities within the family is fraught. On one hand, queer people are ‘more likely to live alone and to not have access to the traditional informal family support many heterosexual and cis-gender people do have available.’[viii] Yet in a more expansive sense, familial relationships have historically reproduced the ‘patriarchal social structures that make up our society’,[ix] according to Kenway, playing a key role in the creation of restrictive norms around sexuality and gender. For many queer people, primary experiences of exclusion and discrimination can originate from familial relationships. In practice, then, while families tend to serve as the environments in which love and care – that ‘reciprocal, relationship-based underpinning’ – are fostered, they can also form sites of conflict around sexual and gender expression.
The problematic relationship between queer people and the family has led to the popular concept of ‘chosen families’ – kinship circles that go beyond blood relations – within LGBT communities. A Stonewall survey of LGB people in Britain found that a significantly higher portion of respondents said they would turn to their friends for support if they were ill than their heterosexual counterparts,[x] speaking to an inherent flexibility to the idea of what constitutes ‘family’ within queer social life. While traditional families tend to be multi-generational, creating more capacity for caregiving from younger to older relatives, intergenerational contact within wider society is limited. This has given rise to the phenomenon of the ‘gay age gap’, consisting in a ‘more pronounced generational divide and heightened age segregation within the LGBT community as a whole’.[xi] Opportunities for intergenerational exchanges of care can therefore be sparser within queer communities, where relationships based on traditional, familial connections are less common.
Social Care
Social care provision in Scotland usually takes the form of universally available, free nursing and/or personal care taking place within the recipient’s home. Residential care homes are predominantly run by the private sector,[xii] though personal and nursing care services within them can be funded by local councils.[xiii] While care, along with health services more broadly, is devolved in Scotland, the splitting of different services into paid and freely available tiers integral mirrors that of the UK care system more broadly, and speaks to a significant blockage to accessing care: affordability. LGBT Health and Wellbeing’s report found that 94 per cent of respondents identified affordability as a key concern when considering residential care.[xiv] Financial support from local councils to care home residents in Scotland crucially does not extend to accommodation and living costs, meaning that clear financial barriers remain integral to accessing certain types of care in Scotland.
Whether care is received in a person’s own home or in a fee-paid residential facility, it entails a significant change to one’s most intimate, domestic space. The above report demonstrates that both ‘LGBT+ older people’s perceived fears as well as actual discriminatory experiences’ inform a pervasive anxiety about entering ‘mainstream communal living institutions’.[xv] Meanwhile, the receipt of care in one’s own home (the overwhelmingly preferred option among the above report’s respondents) runs its own set of risks. Home tends to be where the signifiers of sexuality and gender are most visible – where one feels safest to wear gender-affirming clothes, display art, photographs books and trinkets. Yet the above study found that ‘having care workers come into one’s home who commit microaggressions through lack of education or who are homophobic, biphobic or transphobic can take away that safe space.’[xvi] Older LGBT people in Scotland today have lived through periods in which queer sexualities have faced enduring social stigma and for many years, been directly criminalised by law.[xvii]
This may go some way to explaining why receiving care from strangers and in strange settings, might be a particularly daunting prospect.
Anxiety around discriminatory treatment is not specific to Scotland but indicative of a broader situation. In the UK, confidence levels in social support services are very low among the LGBT community. The Stonewall survey mentioned earlier found that ‘three in five [respondents] aren’t confident that social care and support services, like paid carers, or housing services would be able to understand and meet their needs.’[xviii] A recent landmark civil case in England, involving gay liberation activist Ted Brown, shed light on the extent of homophobic treatment queer older people can experience within the care system.[xix] Ted’s partner Noel had endured extreme physical and mental abuse at the hands of care workers in a Croydon nursing home, while suffering from dementia. Ted and Noel’s case, recently documented in a short Channel 4 film,[xx] attests to the perceived and real threats experienced by queer older people within caregiving settings, the extent to which remains under-researched on an institutional level.
Social care may be universal in name both in Scotland and the UK, but in practice can become a space in which sexual and gender difference is brutally visible. Continuing discriminatory attitudes towards queerness inform how people with marginalised sexual and gender identities experience care. But the structure of care in Scotland and the UK, in which services are often severely underfunded and fragmented into private and public segments[xxi] can lead to conditions in which mistreatment can go unnoticed and people’s needs can go unmet, creating a race to the bottom in conditions for both those who provide and receive care in formal settings. Many commentators, think tanks and campaigning groups are now in accord that Scotland and indeed the UK are experiencing a crisis of care[xxii] – one that endangers the older population more broadly, but also older LGBT people in particular ways. Barriers to queer elder care therefore reflect back onto a problematic social organisation of care, in which marginalised people are liable to fall through cracks in the system.
Community
The queer community has historically proven highly resourceful in the face of crisis. At the height of the AIDS pandemic and the surrounding public panic that particularly demonised gay men, informal networks of care arose within LGBT communities. New forms of community care even breached existing gendered divisions among LGBT people: according to historian Jad Adams, ‘lesbians were active and much appreciated for their caring role in looking after men with AIDS – hospital visits, social security forms, befriending and so on.’[xxiii] Given the continuation of chosen families within queer social life, the expansion and diversification of informal community care is likely to be a crucial factor in ensuring access to elder care among LGBT people, especially those who fall outside of traditional family units.
A culture of care and kinship is also rooted in many local communities in Scotland. In Govanhill in Glasgow’s Southside, for example, the Dixon Community is ‘a multicultural organisation providing care and support to older people and carers’ since 1972.[xxiv] Care organisations of this type, that arise within the communities that they support, are often able to attend to the anxieties and barriers that arise for marginalised members of the community in a way that social care services and family-based care sometimes struggle to. While ‘care does not become easy in this context’ of community-based provision, Kenway argues, ‘it can be eased by distributing it more broadly and imaginatively’.[xxv]
When communities are strong and well-resourced, and supported by high-quality public care provision, this benefits everybody, including those whose sexuality and gender depart from social norms. The experiences of LGBT people in old age holds up a mirror to the society in which they live. While the universality of care is undermined by continued social stigma, affordability, underfunding and decimated conditions, both the history of LGBT care networks and local examples of community care provide the blueprints of a rich, thriving, intergenerational culture, in which care is not a burden but a universal value.
[i] ‘Fit For Purpose: inclusive housing and social care for older LGBTQ+ people’, LGBT Health and Wellbeing, 2023. https://www.lgbthealth.org.uk/resource/fit-for-purpose/
[ii] Jack Ewing, ‘Report calls for care homes for LGBT people’, BBC, 2023. https://www.bbc.co.uk/news/uk-scotland-66940340
[iii] Arun Midha, Douglas Pattullo, Patricia Cantley and Phillp Whyte, ‘The test of a civilisation: How does Scotland look after elderly citizens?’, IPPR, 2024. https://www.ippr.org/articles/the-test-of-a-civilisation
[iv] ‘Caring for All: A National Care Service for Scotland’, Common Weal, 2022. https://commonweal.scot/wp-content/uploads/2022/02/Caring-For-All.pdf
[v] ‘Our Work in Scotland’, Carers Trust. https://carers.org/our-work-in-scotland/our-work-in-scotland
[vi] ‘Key facts and figures about caring’, Carers UK. https://www.carersuk.org/policy-and-research/key-facts-and-figures
[vii] Emily Kenway, ‘To Solve the Care Crisis, Re-Imagine ‘Family’’, The Lead, 2023. https://thelead.uk/solve-care-crisis-re-imagine-family
[viii] Jolie Keemink, ‘Creating Inclusive Residential Care for LGBTQ+ Elders (CIRCLE)’, University of Kent, 2024. https://research.kent.ac.uk/chss/research-projects/creating-inclusive-residential-care-for-lgbtq-elders-circle/
[ix] Kenway, ‘To Solve the Care Crisis, Re-Imagine ‘Family’’, The Lead, 2023. https://thelead.uk/solve-care-crisis-re-imagine-family
[x] April Guasp, ‘Lesbian, Gay & Bisexual People in Later Life,’ Stonewall. https://www.ageuk.org.uk/bp-assets/globalassets/shropshire-telford--wrekin/original-blocks/our-services/useful-links/stonewall-lesbian-gay-and-bisexual-people-in-later-life.pdf
[xi] Sylvie Paulick, ‘Intergenerational Dialogue with(in) the LGBT Community’, ILGA-Europe, 2008. https://www.ilga-europe.org/files/uploads/2022/04/Intergenerational-Dialogue-LGBT-Community.pdf
[xii] Profiting from care: why Scotland can’t afford privatised social care’, Scottish Trades Union Council, 2022. https://www.stuc.org.uk/resources/profiting-from-care-report.pdf
[xiii] ‘Personal and nursing care in care homes’, Care Information Scotland, 2024. https://www.careinfoscotland.scot/topics/care-homes/paying-care-home-fees/personal-and-nursing-care-in-care-homes/
[xiv] ‘Fit For Purpose’, LGBT Health and Wellbeing, 2023. https://www.lgbthealth.org.uk/resource/fit-for-purpose/
[xv] Ibid.
[xvi] Ibid.
[xvii] Consenting sex between men over the age of 21 was only decriminalised in Scotland in 1981 compared to 1967 in England and Wales. ‘LGBT History Month: Scrap the Section!’, National Records of Scotland. https://www.nrscotland.gov.uk/research/learning/features/lgbt-history-month
[xviii] Guasp, ‘Lesbian, Gay & Bisexual People in Later Life,’ Stonewall. https://www.ageuk.org.uk/bp-assets/globalassets/shropshire-telford--wrekin/original-blocks/our-services/useful-links/stonewall-lesbian-gay-and-bisexual-people-in-later-life.pdf
[xix] Mabel Banfield-Nwachi, ‘Man faced homophobic abuse in London care home, partner says’, The Guardian, 2023. https://www.theguardian.com/society/2023/jun/01/noel-glynn-ted-brown-homophobic-abuse-care-home-croydon-london
[xx] Ted and Noel, Channel 4, 2023. https://www.channel4.com/programmes/ted-noel
[xxi] ‘Caring for All’, Common Weal, 2022. https://commonweal.scot/wp-content/uploads/2022/02/Caring-For-All.pdf
[xxii] ‘The UK care crisis explained’, Open Democracy. https://www.opendemocracy.net/en/oureconomy/the-uk-care-crisis-explained/
[xxiii] As quoted in Kate Lister, ‘The lesbian ‘blood sisters’ who cared for gay men when doctors were too scared to’, iNews, 2018. https://inews.co.uk/opinion/comment/the-lesbian-blood-sisters-who-helped-save-gay-mens-lives-235100
[xxiv] ‘The Dixon Community’, Greater Govanhill, 2022. https://www.greatergovanhill.com/notices/dixoncommunity
[xxv] Kenway, ‘To Solve the Care Crisis, Re-Imagine ‘Family’’, The Lead, 2023. https://thelead.uk/solve-care-crisis-re-imagine-family