Transcript A queer kind of care in later life

A queer kind of care in later life:
Rethinking health and social care for older
lesbian, gay, bisexual and transgender (LGBT)
people in Wales.
Dr Paul Willis
Senior lecturer in social work
School for Policy Studies,
University of Bristol
Email: [email protected]
@pwillis5
Acknowledgements
Community collaborators: Older LGBT Network for Wales
(through Age Cymru); My Home Life Wales
Funder: National Institute for Social Care and Health Research
in Wales
Research Team/s: Paul Willis, Michele Raithby, Tracey
Maegusuku-Hewett, Penny Miles, Paul Nash, Chris Baker &
Sherrill Evans.
Stereotypes about older people and sexuality
Asexual
Humorous
Risky
Patronising
Deviant
Paternalism
Thinking about the social environment ….
• We may have marriage equality but….
Three-quarters of LGBT+ people still feel the need to lie about their
sexuality or gender identity....
Pride in London, with Quadrangle and Populus, conducted a survey of
more than 1,000 LGBT+ people in the UK.
...people who are LGBT+ are six times less likely to hold a partner’s
hand in public than the rest of the population, and that LGBT+
respondents are five times more likely to have been bullied at work
because of their gender.
What do we already know? 1
• Older LGB adults (55+) more likely to be single, live alone & have less
contact with biological kin compared to heterosexual peers (Stonewall, 2011)
• Life-histories overshadowed by…
criminalisation (until 1967 in Great Britain),
pathologisation as mental disorder
popular beliefs of same-sex relationships as sinful and socially degraded
• Formation of social networks and bonds beyond biological kin – ‘chosen
relationships’ (Heaphy and Yip, 2003)
• Some older adults’ life-histories include participation in heterosexual
relationships as well as participation in LGB and queer subcultures
What do we already know? 2
• Ageist assumptions of asexuality – Sexuality always in decline in older adults
or primarily associated with youthful bodies and identities
• Self-perceptions of accelerated ageing among gay men
• Heterosexist assumptions & discrimination persists in health and social care
services and older LGBT people anticipate discriminatory treatment
• End of life care report (Marie Curie, 2016) - 74% of LGBT people (sampled)
are not confident that health and social care services provide sensitive end
of life care for their needs.
What do we know already? 3
• Stonewall survey ‘Unhealthy Attitudes’ Report (Somerville, 2015) representative sample of 3,001 health and social care staff (inc. doctors, nurses,
OTs, social workers, support workers etc.)
• 24% staff have heard colleagues make negative remarks about LGB people, or
use discriminatory language like ‘poof’, ‘dyke’ or ‘queer’, while at work in the
last five years.
• 26% LGB staff say they have personally experienced bullying or unfair treatment
from colleagues in the last five years as a result of their sexual orientation
• 10% health and social care professionals with direct responsibilities for patient
care have witnessed other staff express the belief that someone can be ‘cured’
of being LGB.
What about older trans people’s lives?
• Little research dedicated to older trans adults – hidden within
‘LGBT’ samples
• Individuals may wait to retirement before transitioning in later life –
avoiding work discrimination and loss of financial and social status
(Bailey, 2012)
• Trans Mental Health Study 2012 – 65% (N=665) have experienced
worries about ‘growing old alone’ because they’re trans.
• Policy drivers around ‘successful’ and ‘healthy’ ageing – what
would this look like for older trans people?
Notion of queer time: living beyond heterosexual life-markers…
‘Queer subcultures produce alternative temporalities by allowing
their participants to believe that their futures can be imagined
according to logics that lie outside of those paradigmatic
markers of life experience – namely, birth, marriage,
reproduction, and death.’
(Judith Halberstam, 2005, p. 2)
Policy drivers in Wales
 Strategy for Older People in Wales
 Older People’s Commissioner for Wales
 National Service Framework for Older People in
Wales (10 standards)
 Social Services and Wellbeing (Wales) Act 2014
– citizen wellbeing at the heart of social care
provision
 Equality Act 2010 (age; sexual orientation;
gender assignment)
Research on inclusion of older LGB people
in care and nursing homes in Wales
How are the sexual identities and relationships of older LGB residents
perceived and supported in care environments in Wales?
1. Self-administered questionnaire - care/ nursing staff and managers
LGB KASH (Heterosexual Attitudes to LGBT people) (Worthington et al, 2005)
ASKAS (Ageing Sexuality Knowledge & Attitudes) (White, 1982; Bouman et al, 2007)
2. Semi-structured interviews with older LGB adults (n=29) living in Wales
3. Stakeholder Focus Groups
9 groups with care staff/ managers and stakeholders (n=62)
Interview themes - older LGB adults
• Long shadows of past discrimination and institutional homophobia
• Anticipating discrimination and homophobia from health and social
care staff
• Diminished contact with partners and families of choice
• Dementia and decision-making - losing control over personal dress
and presentation
• Feeling alone and being socially isolated
• ‘No place like home’… building peer communities for future support
‘I mean, you know, we have moved an enormously
long way but I mean it still feels a bit like, you know,
if you have to go into a residential home is
everybody then going to assume, I mean (sighs)
how dare you assume I’m heterosexual, you know?
And people still do assume.’
Gillian, lesbian, 66 years
Survey results – care staff and managers
121 respondents, majority white, women, heterosexual, born in Wales
•
Most respondents held affirmative attitudes towards sexuality and ageing
•
Majority recognised the role of care services in supporting residents’ sexuality
and relationships
•
More conservative responses when advocating sex education sessions for
residents (54.2% in support)
•
Respondents did not consider overtly homophobic views to be characteristic
of them BUT did not feel knowledgeable about LGB history, symbols or
community
•
Supportive of civil rights for LGB people, but this declines when in conflict with
religious views held.
Focus group findings - care staff and managers
•
‘Not on this floor…’ LGB identities and relationships not
recognised or visible – heterosexual spaces.
•
Uncertainty on how to challenge homophobia from residents
– fears of embarrassing or distressing others
•
Separating sexuality from care – extraneous to everyday care
•
Equality means ‘treating everyone the same’ – not
recognising different life-stories and outcomes
•
Person-centred care… without the sex please.
•
Highly receptive … ‘We want to know more!’
... I’m not going to provide a male member of staff
for a homosexual resident but they’re not
different, they’re not going to expect those things
either, are they? You know they’re going to be the
same as everybody else. They’re going to say,
“Well I don’t like gravy on my dinner. I like two
sugars in my coffee.” Surely they’re not going to
come in here and go, “Well I’m gay. Now then
what are you going to do about it?”
Care home manager
Some limitations to our research
• Missing voices – residents; staff from black & ethnic minority
backgrounds (gatekeepers)
• Views of ancillary staff (cleaners, kitchen staff etc.) – frequent
contact with residents
• Missing responses in self-administered questionnaire – stigma
attached to the topic.
Case for change – some implications
 Building LGBT-responsive services means starting with the
assumption that LGBT patients and service users will anticipate
discriminatory and heterosexist treatment
…. so how do we counter-act this from first contact?
 Demand for training - Avoiding the ‘how-to-work-with...’ model
 Being attentive to sexual biographies of ALL older service users/
patients – and receptive to the critical turning points within those
stories.
 Rethinking person-centred care in policy and practice – what
about sexual personhood?
Trans* Ageing & Care Project (TrAC) 2016-18
‘Investigating dignified and inclusive health and social care for older
trans* people in Wales.’
 Collaboration with trans* community members as critical advisors and peer
interviewers.
 Methods include:
 life-history interviews with trans* older people across Wales;
 survey of health and social care professionals providing services to older adults; and,
 workshops with professionals to develop professional guidelines.
 To produce digital stories of older trans* adults’ lives
* Seeking additional input and involvement from transmen.
URL: www.trans-ageing.swan.ac.uk
Special issue 1, Volume 17 2016
Diolch yn fawr am wrando/
Thank you for listening!
References
Bauer, M., Nay, R., and McAuliffe, L. (2009). Catering to love, and intimacy in residential aged care: What
information is provided to consumers? Sexuality and Disability, 27, 1, 3-9.
Doll, G.A. (2012). Sexuality and Long-Term Care: understanding and supporting the needs of older adults. Health
Professions Press, Baltimore.
Halberstam, J. (2005). In a Queer Time and Place: Transgender Bodies, Subcultural Lives. New York: NYU
Press.
Heaphy, B., & Yip, A. (2003). Uneven possibilities: Understanding non-heterosexual ageing and the
implication of social change. Sociological Research Online, 8, 4, pp. 1-19.
International Longevity Centre UK (ILC-UK) (2011) The Last Taboo: A guide to dementia, sexuality, intimacy and
sexual behaviour in care homes. London: ILC-UK.
Nolan, M.R., Davies, S., Brown, J., Keady, J. & Nolan, J. (2004). Beyond ‘person-centred’ care: a new vision for
gerontological nursing. International Journal of Older People Nursing in association with Journal of Clinical Nursing
13, 3a, 45–53.
Somerville, C. (2015) Unhealthy Attitude: the treatment of LGBT people within health and social care services.
London: Stonewall UK. Retrieved from, http://www.stonewall.org.uk/sites/default/files/unhealthy_attitudes.pdf
Stonewall. (2011). Lesbian, gay and bisexual people in later life. London: Stonewall. Accessed 27th August 2013,
Available online at: http://www.stonewall.org.uk/documents/lgb_in_later_life_final.pdf
Stonewall. (2012). Working with older lesbian, gay and bisexual people: A Guide for Care and Support Services.
London: Stonewall.
Tolley, C., and Ranzijn, R. (2006). Heteronormativity amongst staff of residential aged care facilities. Gay and
Lesbian Issues and Psychology Review, 2, 2, 78-86.
Yep G.A. (2002). From homophobia and heterosexism to heteronormativity: Toward the development of a model
of queer interventions in the university classroom. Journal of Lesbian Studies, 6, 3/4, 163–176.
Westwood, S. (2015). ‘We see it as being heterosexualised, being put into a care home’: gender, sexuality and
housing/ care preferences among older LGB individuals in the UK. Health and Social Care in the Community,
Advanced access 24th August 2015, DOI: 10.1111/hsc.12265
References (cont.)
Trans issues in later life:
Bailey, L. (2012). Trans Ageing: Thoughts on a life course approach in order to better understand trans lives. In R.
Ward, I. Rivers & M. Sutherland (Eds.). Lesbian, Gay, Bisexual and Transgender Ageing: Biographical approaches for
inclusive care and support. (pp. 51-66). London: Jessica Kingsley Publishers.
McNeil, J., Bailey, L., Ellis, S., Morton, J. & Regan, M. (2012). Trans Mental Health Study. Scottish Transgender
Alliance. Accessed online 3rd Oct 23015, http://www.gires.org.uk/assets/Medpro-Assets/trans_mh_study.pdf
Our publications:
Willis, P., Maegusuku-Hewett, T., Raithby, M. & Miles, P. (2016). ‘Everyday advocates’ for inclusive care: Perspectives
on enhancing the provision of long-term care services for older lesbian, gay and bisexual adults in Wales. British
Journal of Social Work. Advanced access January 12, 2016, DOI: 10.1093/bjsw/bcv143
Willis, P., Maegusuku-Hewett, T., Raithby, M. & Miles, P. (2016). Swimming upstream: the provision of inclusive care
to older lesbian, gay and bisexual (LGB) adults in residential and nursing environments in Wales. Ageing and Society
36(2), pp. 282-306.
Willis, P., Raithby, M. and Maegusuku-Hewett, T. (2016). ‘Navigating Stormy Waters: Consent, Sexuality and
Dementia in Care Environments in Wales’. In S. Westwood and E. Price (Eds.). LGBT Individuals Living with
Dementia: Theoretical, Practical and Rights-Based Perspectives. Milton Park: Taylor and Francis.
#transdocfail
Ignited in 2013. Several thousand tweets within the first 48
hours… the tweets continue…
NHS Psych told me I wanted to transition to male cos I was too ugly to live as a
woman. Also told me I'd never pass as male #TransDocFail
3 years after explaining how dangerous (and unlawful) it is, my GP still prints HRT
prescriptions for "Mr Emma Brownbill"~ #TransDocFail
My GP was upset in medicine review that I wasn't under care of a Gender Identity
clinic... I was prescribed hormones 7yrs ago!
Hurting & fuming. 2 years on #nhswales gender pathway & I'm NOWHERE. I had
the go-ahead a year ago NO REPORT has been written
Awesome bureaucratic #transdocfail : NHS Wales (@nwssp) claim they can't
change the name on your records & have to create a new one for you.