My People
A project exploring the experiences of Gay,
Lesbian, Bisexual, Transgender and Intersex
seniors in aged-care services
Written by Dr Catherine Barrett
Co-ordinated by Matrix Guild Victoria Inc
in conjunction with
Vintage Men Inc
June 2008
Funded by the Reichstein Foundation
Enquiries and further information
• Jane Kent, Project Co-ordinator, Community Development Worker, Matrix
Guild Victoria Inc, jkent6@bigpond.com/0438 411 441/PO Box 99, Fairfield
Victoria 3078 (www.matrixguildvic.org.au).
• Paul Busey, President, Vintage Men Inc., vintagemen@yahoo.com.au/0419
341 547/ PO Box 6769, 600 St Kilda Road Central Victoria 8008
(www.geocities.com/vintagemen).
• Catherine Barrett, Project Researcher: c.barrett@latrobe.edu.au/or 03 9285
5297.
For further copies, go to (www.matrixguildvic.org.au) or (www.glhv.org.au).
© Copyright Matrix Guild Victoria Inc. Published by Matrix Guild Victoria Inc
ISBN 978-0-646-49822-5
Acknowledgements
Matrix Guild Victoria Inc. and Vintage Men Inc. would like to thank the following
individuals, groups and organisations for their contributions to this project:
• The Reichstein Foundation for funding the project
• The participants who generously shared their stories
• The Project Coordinator. Jane Kent
• The Project Researcher.
Dr
Catherine Barrett
Matrix Guild Victoria Inc and Vintage Men Inc would specially like to thank Dr Jo
Harrison and Dr Ruth McNair for their help with the project and the report.
The Steering Committee including:
• Jane Kent, The Project Coordinator, Community Development Worker,
Matrix Guild Victoria Inc.
• Paul Busey, President, Vintage Men Inc.
• Dr Ruth McNair, General Practitioner, The Carlton Clinic and Senior
Lecturer, The Department of General Practice, The University of
Melbourne, Member of the Australian Lesbian Medical Association
Committee and Member of the Ministerial Advisory Committee on Gay
and Lesbian Health.
• Lola McHarg, Admissions Officer, The Brotherhood of St Laurence
• Barbary Clarke, Victorian Gay and Lesbian Rights Lobby
• Associate Professor Anne Mitchell, Director, Gay and Lesbian Health
Victoria
• Lyn Morgain, CEO, The ALSO Foundation
• Zoe Dunbar: Office Manager and Volunteer Coordinator,
The ALSO
Foundation
• Heather Birch, Former Chair of ALSO Foundation’s Senior Project
Advisory Committee, former member of Community Development
Committee
• Lesley Walsh, CEO, Women’s Health East
• Sam Seamer, Former representative Women’s Health Information in the
South East
• Joy Free, Researcher, Women’s Health West
• Dr. Rosie Crone, Consultant Geriatrician and representative of the
Australian Lesbian Medical Association
• Dr. Jo Harrison, School of Health Sciences, The University of South
Australia
• Dr Catherine Barrett, Project Researcher and Community Liaison Officer,
The Australian Research Centre in Sex, Health and Society.
And others who gave their support. including:
The Victorian AIDS Council, The Australian Lesbian and Gay Archives, Lizzi Craig,
The Victorian Equal Opportunity & Human Rights Commission, The Gay and
Lesbian Liaison Unit and Elder Abuse Prevention Unit with the Victoria Police, The
Australian Research Centre in Sex, Health and Society, Julie Peters, JOY FM,
Philomena Horsley, Caitlin Street.
Exploring the Experiences of GLBTI Seniors in Aged Care Services
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TABLE OF CONTENTS
ACKNOWLEDGEMENTS ........................................................................................ 5
GLOSSARY OF TERMS............................................................................................9
EXECUTIVE SUMMARY ....................................................................................... 11
B
.................................................................................................................................... 11
ACKGROUND
M
.................................................................................................................................. 12
ETHODOLOGY
Participants’ characteristics ......................................................................................................... 12
F
............................................................................................................................................ 13
INDINGS
Core issues in relation to GLBTI seniors...................................................................................... 13
M
............................................................................................................................. 17
OVING FORWARD
GLBTI-specific aged-care services ...............................................................................................17
Education...................................................................................................................................... 17
Partnerships with aged-care services ........................................................................................... 20
BACKGROUND TO THE STUDY .........................................................................21
PROGRAM OUTLINE.............................................................................................24
EXPLORING THE EXPERIENCES OF GLBTI SENIORS
...................................26
D
........................................................................ 26
ATA COLLECTION AND PARTICIPANT INVOLVEMENT
The challenge of identifying participants...................................................................................... 27
P
........................................................................................................ 29
ARTICIPANT CHARACTERISTICS
D
................................................................................................................................. 30
ATA ANALYSIS
C
................................................................................................ 31
REDIBILITY AND TRUSTWORTHINESS
E
................................................................................................................. 32
THICAL CONSIDERATIONS
FINDINGS FROM INTERVIEWS..........................................................................35
1.
T
:
‘C
’35
HE IMPACT OF HISTORICAL EXPERIENCES OF DISCRIMINATION
OP IT SWEET AND SHUT UP
2.
I
....................................................... 37
NVISIBILITY AS AN IMPACT OF CURRENT DISCRIMINATION
Disclosure to aged-care service-providers ................................................................................... 38
3.
T
................................................................................. 39
HE IMPACT OF IDENTITY CONCEALMENT
4.
L
:
..................................................... 40
ONGING FOR TOUCH
EXPLOITATION AND VULNERABILITY
5.
T
................................................................................. 41
HE IMPACT OF INADVERTENT VISIBILITY
HIV positive .................................................................................................................................. 42
Transgender visibility ................................................................................................................... 42
Having a partner........................................................................................................................... 43
6.
T
........................................................................................................ 43
HE IMPACT OF DEMENTIA
7.
E
...................................................................... 46
NABLING CULTURAL AND SEXUAL EXPRESSION
Privacy.......................................................................................................................................... 46
Available resources....................................................................................................................... 47
Service-provider control and resident autonomy .......................................................................... 47
Family control............................................................................................................................... 49
SENIORS’ STORIES ................................................................................................51
S
1:
‘W
?’
L
HIV/AIDS
..................... 51
TORY
HY NOT TAKE ALL OF ME
IVING WITH
IN A NURSING HOME
Tom’s story ................................................................................................................................... 51
Stories of challenge and staff education ....................................................................................... 54
S
2:
‘D
’
,
,
’:
T
TORY
ON
T BE TOO POLITE
GIRLS
SHOW A LITTLE FIGHT
HE STORY OF LESBIANS PROVIDING
................................................................................................................ 63
PALLIATIVE CARE AT HOME
Background to Thelma’s story ...................................................................................................... 63
Stories of visibility and partnership.............................................................................................. 66
S
3:
‘S
’:
T
C
TORY
HE IS WHO SHE SAYS SHE IS
HE STORY OF A TRANSWOMAN LIVING IN A
ATHOLIC
............................................................................................. 73
SUPPORTED ACCOMMODATION SERVICE
Background to Nancy’s story........................................................................................................ 73
Stories of discrimination and advocacy ........................................................................................ 76
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IMPLICATIONS FOR AGED-CARE SERVICES................................................ 81
C
GLBTI
.................................................................................. 81
ORE ISSUES IN RELATION TO
SENIORS
M
............................................................................................................................. 84
OVING FORWARD
GLBTI-specific aged-care services ...............................................................................................85
Education...................................................................................................................................... 87
Partnerships with aged-care services ........................................................................................... 90
ATTACHMENT 1: ADVERTISING....................................................................... 91
ATTACHMENT 2: PARTICIPANT INFORMATION & CONSENT................ 93
RESOURCES .............................................................................................................99
REFERENCES.........................................................................................................101
TABLES AND FIGURES
T
1:
C
A
-C
R
............................................30
ABLE
HARACTERISTICS OF
GED
ARE
ECIPIENTS
FIGURE 1: PROGRAM CONCEPT………………………………………………..25
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Glossary of terms
Aged-care services:
Care provided for seniors including: (a) in their home such as
community nursing; domestic assistance; personal care; meals on wheels; home
maintenance; transport, and community-based respite care; (b) community services
provided in community centres; day-care centres; day hospitals; medical centres; (c)
residential aged-care services such as nursing homes and hostels.
Bisexual
: A man or woman who is sexually and emotionally attracted to both men
and women.
Closet
: An historical term used to describe non-disclosure of sexual/gender identity.
Cross-dresser:
A person who dresses in clothes typical of the opposite sex.
Gay
: A man whose primary sexual and emotional attraction is towards other men.
Gender
: The socially defined roles assigned to males and females.
Gender identity:
a person’s own sense of identification as male or female.
GLBTI
: An acronym for gay, lesbian, bisexual, transgender and intersex.
Heterosexism
: Bias towards heterosexuals which ignores the presence and the needs
of gay men, lesbians and bisexuals.
Heterosexual
: A person whose primary sexual and emotional attraction is towards the
opposite sex.
Homo/transphobia
: A dislike of people who are homosexual or transgender that may
manifest as discrimination or violence.
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Intersex
: A person born with sex chromosomes, external genitalia, or an internal
reproductive system that is not exclusively male or female.
Lesbian
: A woman whose primary sexual/emotional attraction is towards women.
Non-heterosexual:
A person who is gay, lesbian or bisexual (also know as queer).
Out
: The disclosure of sexual/gender identity.
Senior
: A person 65 years or older.
Sexual identity:
A person’s identity, an established mental picture of self, with a
specific and fixed sexual identity e.g., heterosexual, homosexual, lesbian or bisexual.
Transgender:
A man or woman whose gender identity is at odds with their biological
sex.
Transsexual:
A transgender person who is in the process of seeking, or has
successfully completed, sexual reassignment surgery.
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Executive summary
Background
Many gay, lesbian, bisexual, transgender and intersex (GLBTI) seniors do not feel
safe disclosing their sexual or gender identity. This is particularly true of those who
are utilising the services of the aged-care sector. This is not surprising, given that
many of these men and women grew up in an era when disclosure could result in
imprisonment, enforced medical ‘cures’, loss of employment and rejection by family
and friends. However, the decision to hide one’s sexual/gender identity in aged-care
services is also reinforced by recent anecdotal reports of discrimination when
disclosure occurs.
One of the consequences of closeting, or hiding one’s sexual/gender identity, is that
aged-care service-providers are unaware of GLBTI clients and their particular needs.
This invisibility, and the lack of evidence regarding the experiences of GLBTI
seniors, perpetuate the status quo in which discrimination often goes unchallenged.
Aged-care service-providers are also often unaware of the importance of providing
GLBTI-friendly services.
Aged-care service-providers may also be unaware of their legal responsibilities in
relation to GLBTI seniors. The Victorian Equal Opportunity & Human Rights
Commission (2006) identifies that the human rights of all Australians, including
GLBTI seniors receiving aged-care services, are recognised. In particular, under the
Charter of Human Rights and Responsibilities
(2006), public agencies are obliged to
consider that people have the right to enjoy their human rights without discrimination
and the right to enjoy their identity and culture. Additionally, the
Equal Opportunity
Act
(1995) makes it
unlawful to discriminate against someone on the basis of her or
his sexuality or gender, including discrimination in the provision of goods and
services such as
aged-care services. Furthermore, the
Statute Law Amendment
(Relationships) Act
(2001) recognises that people in same-sex relationships have the
same rights as heterosexual couples to authorise medical treatment and access
information about their partner’s health and hospital visitation.
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To assist aged-care services to achieve the necessary reforms, Matrix Guild Victoria
Inc., in conjunction with Vintage Men Inc., developed a four-stage Program for aged-
care services in Victoria. The overall aim of the Program is to reduce disparities for
GLBTI seniors in aged care. The first stage of the Program, which concludes with the
publication of this report, explored the experiences of GLBTI seniors in aged-care
services in order to provide a catalyst for change. The additional Program stages aim
to seek input from aged-care service-providers and support the development of
GBLTI friendly services.
Methodology
Stage one of the Program, conducted in 2007, included two phases. The first phase
involved in-depth interviews which explored the experiences of GLBTI seniors
receiving aged-care services. A checklist of items to be covered was developed.
Participants were invited to describe: their perceptions and/or experiences of being
GLBTI in the early twentieth century; their needs as a GLBTI senior; their
experiences disclosing sexual/gender identity; any positive or discriminatory
experiences of aged-care services; the impacts of aged-care services on their lives;
and any changes required to enable seniors to feel safe disclosing their sexual/gender
identity. Interviews were audio-recorded and participants verified interview notes
before a thematic analysis was conducted.
The second phase involved identifying three participants who were willing to take
part in further interviews to inform the construction of case study narratives. These
participants were also invited to nominate ‘significant others’, including carers and
family members, for interview, in order to contribute to their stories.
Participants’ characteristics
Interviews were conducted with 25 participants. Twenty-three of the interviews
investigated the stories of 19 aged-care recipients, three of which were chosen as case
studies. While the study sought to interview the aged-care recipients, it became
apparent that some GLBTI seniors were unable to share their stories because they
were disempowered, or deceased. Therefore, as well as interviews with aged-care
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recipients (14), stories were also shared by partners (2), a friend (1) and aged-care
service-providers (2). Similarly, case-study narratives were complemented by
interviews with carers (2) and family or friends (2). The stories recounted experiences
regarding a range of aged-care services, including: home care (9), nursing homes (7),
hostels (20), a psycho-geriatric residential care facility (1) and day-care centres (2).
The aged-care recipients had an average age of 72 years (56 to 87 years) and included
seven females who identified as lesbian, eight males who identified as gay or queer,
two bisexual males and one transgender woman. Most participants lived in the
Melbourne area (13) and almost half had a current partner.
Project advertisements also identified a number of willing interviewees who were not
receiving aged-care services. One such interview was conducted with a 47-year-old
transsexual lesbian who provided valuable insights into the challenges she
encountered working in aged care as a woman who did not always pass as a woman.
A number of aged-care service-providers made contact with the researcher to share
their experiences regarding the barriers and enablers to creating GLBTI-friendly aged-
care services. One interview was conducted and will be reported on in stage two of
the program.
Findings
The key findings from the study are drawn from a number of themes which emerged
in relation to the experiences of GLBTI seniors. Additionally, strategies to address the
discrimination experienced by some GLBTI seniors in aged-care services were
identified. The eight core issues identified as relating to the experiences and special
needs of GLBTI seniors are presented next.
Core issues in relation to GLBTI seniors
1. The impact of historical experiences of discrimination
The current generation of GLBTI seniors was coming of age at a time when their
sexual/gender identity could result in enforced medical ‘cures’, imprisonment or loss
of family, employment and friends. Consequently, they have special needs which
need to be understood by aged-care service-providers. In particular, some GLBTI
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seniors:
1.1. Have never experienced a time when they have felt safe disclosing their
sexual/gender identity
1.2. Revisit past discriminatory experiences when encountering discrimination
and consequently feel upset, anxious and depressed
1.3. Have learned that they need to be assertive to prevent discrimination
1.4. Often have a network of ‘chosen’ family or friends rather than genetic
family ties, while some may have few social connections.
2. Invisibility as an impact of current discrimination
Some GLBTI seniors closet their sexual/gender identity in aged-care services
because:
2.1. They are aware that discrimination occurs, as they have:
2.1.1. Experienced discrimination in aged-care services
2.1.2. Heard reports about discrimination in these and related services
2.1.3. Witnessed discriminatory responses from aged-care service-
providers to GLBTI people profiled in the media
2.2. They fear a diminished standard of care or deterioration in their
relationships with their carers
2.3. They fear the resignation of valued home carers
2.4. They believe that aged-care service-providers do not expect them to be
sexual or GLBTI
2.5. They believe that many aged-care service-providers do not understand what
GLBTI or GBLTI culture means and therefore how to meet the needs of
GLBTI seniors.
3. The impact of identity concealment
GLBTI seniors who feel unable to disclose their sexual/gender identity may:
3.1. Feel unable to be themselves and feel devalued or depressed.
3.2. Experience stress and pressure from maintaining a façade of heterosexuality
3.3. Have unmet care needs
3.4. Have limited opportunities for sexual expression.
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4. The impact of inadvertent visibility
Some GLBTI seniors are exposed to discrimination from staff, co-clients and visitors
because they are unable to hide their sexual/gender identity. These seniors, who
require protection in aged-care services, may include:
4.1. Transsexuals who do not pass as a man or a woman
4.2. Cross-dressers who do not have the opportunity to cross-dress in privacy
4.3. Those who have a demonstrative relationship with their same-sex partner
4.4. Men who are HIV positive and are therefore expected to be gay
4.5. Seniors with dementia who have lost their capacity to assess when and
where it is safe to disclose their sexual/gender identity.
5. The impact of dementia
Some GLBTI seniors have dementia and need:
5.1. Staff to understand that the grief and loss involved in having a same-sex
partner with dementia is no less than that experienced by a heterosexual
couple
5.2. To have their relationships recognised by aged-care service-providers, other
clients and families
5.3. To be protected from discrimination by co-clients with dementia
5.4. To be supported to provide informed consent relating to sexual expression
5.5. To be cued around gender/sexual identity if required.
6. Enabling sexual and cultural expression
Sexual and cultural expression is important for the mental health of GLBTI seniors
and may involve:
6.1. Physical touch such as holding hands, hugging, kissing
6.2. Contact with partners and private time together
6.3. Making connections with the GLBTI community, including being with
other GLBTI people, reading GLBTI community magazines, watching
GLBTI television programs, attending special festivals/meetings and
events.
6.4. Dressing in clothing that expresses their sexuality/gender
6.5. Sexual intercourse, masturbation, sex toys and sexually explicit material
such as magazines, DVDs and books.
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7. Inadequate standards of care
Some aged-care services discriminate against GLBTI seniors by failing to create
GLBTI-friendly services, including:
7.1. Staff being unaware of their legal responsibilities regarding discrimination
7.2. Staff not being held to account if discrimination occurs
7.3. A lack of staff guidance in the form of organisational policies, education
and leadership around the care of GLBT seniors
7.4. The provision of a diminished standard of care to GLBTI seniors
7.5. Staff failing to protect GLBTI seniors from discrimination by co-clients and
visitors in shared services
7.6. Restricting opportunities for sexual expression
7.7. Allowing the values and beliefs of aged-care service-providers to govern
the care delivered to GLBTI seniors
7.8. Withdrawing physical contact from gay men in the belief that HIV/AIDS
will be contracted.
8. Achieving a safe environment
A positive response to the disclosure of sexual/gender identity can result in GLBTI
seniors feeling understood, valued and safe. A positive response can be achieved by
aged-care services:
8.1. Creating GLBTI-friendly aged-care services
8.2. Affirming the legitimacy of GLBTI seniors’ sexual/gender identity
8.3. Creating opportunities for dialogue with GLBTI seniors around their care
needs
8.4. Understanding the importance of sexual expression and providing GBLTI
seniors with opportunities for sexual expression to occur
8.5. Valuing the intimate relationships and friendships of GLBTI seniors.
These issues reflect the experiences of the GLBTI seniors interviewed for this study.
The interviewees also provided a number of suggestions for the development of aged-
care services to ensure that consumers are safe from discrimination and that their
needs are met.
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Moving forward
The research participants identified two key strategies to address the many concerns
expressed by GLBTI seniors, as are highlighted in this report. Firstly, support for
GLBTI-specific aged-care services was expressed. Secondly, the need for education
related to the needs of GLBTI seniors was also identified.
GLBTI-specific aged-care services
Most participants articulated support for GLBTI-specific aged-care services. Such
services were viewed as pivotal to the protection of seniors from discrimination by
staff and co-clients. These participants felt that in such a facility their care needs
would be met, sexual expression would be permitted and partners would be
welcomed. They also felt that they would be able to relate to co-clients in shared
services. To date there are no GLBTI-specific aged-care facilities in Victoria.
GLBTI-specific services were considered to be one strategy to prevent discrimination
and meet the needs of GLBTI seniors. A second strategy was the education of aged-
care service-providers.
Education
The need for the education of aged-care service-providers was explicitly described by
some participants. The opportunities for education were also implied in the stories
shared. One particular area where education is required relates to the specific equal
opportunity legislation. Some aged-care service-providers do not appear to understand
their responsibilities under this legislation. It may also be useful to share with aged-
care service-providers the characteristics of care that were valued by GLBTI seniors.
‘My People’
Most participants referred to their valued relationships as ‘My People’. Analysis of
the conversations around ‘My People’ highlighted five key characteristics that can be
applied to aged-care service-providers for the development of GLBTI-friendly aged-
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care services. These characteristics were understanding, empathy, trust, advocacy and
leadership.
Understanding and empathy
The importance of understanding and empathy was highlighted with an emphasis on
the value of service-providers understanding and responding to the needs of GLBTI
seniors. Some participants thought that GLBTI service-providers were better able to
understand their needs and have empathy. Empathy was seen as an act of
understanding, and it was noted that some aged-care service-providers did not
empathise, as they did not understand what it meant to be GLBTI. Many participants
indicated that aged-care service-providers needed to understand the needs of GLBTI
seniors before the GLBTI service consumers could feel safe disclosing their
sexual/gender identity. This included the need for service-providers to understand the
following:
1. The fact that seniors are sexual
2. The fact that some seniors are GLBTI
3. What cultural and sexual expression means to GLBTI seniors, what it
encompasses and how opportunities for expression can be provided
4. The historical experiences of the current generation of GLBTI seniors and the
implications for their care
5. Strategies to develop GLBTI-friendly aged-care services
6. Positive responses to the disclosure of sexual/gender identity by GLBTI
seniors
7. Negative consequences for GLBTI seniors who feel that they have to re-enter
a closet when they receive aged-care services
8. The impact of staff values and beliefs of service-providers on the care that
they deliver
9. The potential vulnerability of GLBTI seniors who are unable to conceal their
identity
10. Staff responsibility to protect GLBTI seniors from discrimination
11. Universal infection-control guidelines, and how the fear of HIV/AIDS relates
to the care of gay men
12. The special needs of GLBTI seniors with dementia.
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These understandings could be conveyed to aged-care service-providers through
access to the stories presented in this report. It is hoped that these stories can also
generate understanding and empathy among staff, which in turn may serve to assist
GLBTI seniors to feel that they can trust their carers.
Trust
Several participants described the importance of trusting relationships with family,
friends and aged-care service-providers. This is not surprising, given their historical
experiences of discrimination upon disclosure. To foster trust in their relationships
with aged-care service-providers, some participants described allowing carers to know
them as a person before disclosing their sexual identity. Most participants felt that
they needed to trust their carers, particularly if they were dependent on the aged-care
service provided. However, a sense of mistrust and fear was apparent in many stories
and several participants identified the need for aged-care service-providers to
understand and have empathy with GLBTI seniors before they could be considered
trustworthy.
Advocacy
Significantly, the majority of participants who reported positive experiences of aged-
care services had an advocate. In some cases the advocate was a family member or
friend; in other cases it was an aged-care service-provider. Advocates were generally
people who understood GLBTI seniors, had empathy, were trusted and played a
pivotal role in crisis management around incidents of discrimination.
Leadership
The need for strong leadership in policy and practice was also identified. Such a
notion of ‘leadership’ in relation to legal protection could be seen to be provided in
the legislation which prohibits discrimination on the grounds of sexual/gender
identity. However, the practical implementation of such legislative requirements has
sometimes fallen short in some aged-care services. In some services, the development
of organisational policies to support diversity was apparent through the employment
of GLBTI staff and an investment in staff education in diversity.
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To create GLBTI-friendly aged-care services, it would be useful to invite service-
providers to themselves play a role in determining how change can occur. However,
while education and GLBTI-specific facilities are considered important elements of a
development process, some GLBTI seniors currently continue to experience
discrimination. Strategies for the protection of these seniors need to be clarified.
Partnerships with aged-care services
It could be argued that as the community is generally unaware that seniors are sexual
and the some seniors are GLBTI, it is not surprising that aged-care service-providers
hold the same beliefs. Furthermore, few aged-care service-providers have been
provided with education around sexual expression and ageing. However, given the
reliance of seniors on aged-care services, service-providers need to understand the
importance of sexual expression and GLBTI identities.
Aged-care services will increasingly find themselves caring for GLBTI seniors. The
opportunity exists to work with aged-care services to create GLBTI-friendly services.
The achievement of such an outcome would ideally involve the engagement of
service-providers and other stakeholders in the exploration of their own experiences,
the provision of feedback on this report and the determination of strategies for
creating GLBTI-friendly aged-care services. It is hoped that the publication of this
report provides evidence which can serve as a basis for such a process to take place.
In this way, the process of the development of genuinely culturally appropriate aged-
care services can begin.
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Exploring the Experiences of GLBTI Seniors in Aged Care Services 21
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I don’t get on with any of the buggers here.
They’re not my kind of people
(Nancy, 79 years, transsexual woman)
Background to the study
The Australian population is ageing and it is expected that by 2050 a quarter of the
population will be aged 65 years and older (Australian Institute of Health and
Welfare, 2002a). While there are no accurate figures on the percentage of seniors who
are gay, lesbian, bisexual, transgender or intersex (GLBTI), the proportion of the
general population that is not ‘exclusively heterosexual’ is thought to be between
eight and eleven per cent (Australian Medical Association, 2002) and increasing
(Birch, 2004a). The ageing of the Australian population and the growing numbers of
GLBTI people have contributed to the growing interest in the experiences of GLBTI
seniors.
The Australian Institute of Health and Welfare (2002b) has identified that of
Australia’s 2.4 million seniors (aged 65 and over), 42% need assistance to stay at
home and around 5.2% require permanent nursing-home or hostel care. The
experiences of GBLTI seniors accessing these and other aged-care services are
unique. For example, many were coming of age at a time when homosexuality was
illegal or considered to be a sickness from which they could be cured. Consequently,
many individuals ‘closet’ or hide their sexual identity to avoid discrimination.
Recently, it has been recognised that as a result of their experiences of discrimination,
GLBTI seniors have special needs (Chamberlain and Robinson, 2002). However,
given their history of discrimination, many GLBTI seniors do not feel safe disclosing
their sexual/gender identity to aged-care service-providers and so their special needs
are not always identified or met.
The phenomenon of disclosing sexual/gender identity in aged-care services is
complex and can vary in different social or health-care contexts. On one hand it is
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reasonable to expect that a decision not to disclose sexual/gender identity is the
prerogative of each individual. On the other hand, there is increasing concern that
GLBTI seniors have little choice but to conceal their sexual identity, given the reports
that aged-care services are not GLBTI-friendly and have discriminated against some
seniors who have disclosed. Furthermore, there is concern that a discriminatory
response may have negative affects on the sense of self-worth of GLBTI seniors.
The need to improve Australian aged-care services for GLBTI seniors has been
extensively explored by Harrison (2002a, 2002b, 2004a, 2004c, 2005a, 2005b, 2005c,
2006a, 2006b, 2006c) and these publications are available at
(http://www.rainbowvisions.org.au) [Go to Resources – Ageing]. In particular,
Harrison (2001, 2004b) has identified a cycle of invisibility involving GLBTI seniors
in aged-care services. This cycle involves an assumption of heterosexuality by
providers in aged care and a failure to create a climate in which GLBTI seniors are
prepared to disclose their identity, life history or care needs. Consequently, aged-care
service-providers are unaware of or deny the existence of GLBTI clients and their
particular needs. These concerns have also been identified by Dr Mark Hughes from
the University of New South Wales, who has interviewed GLBTI seniors and
proposes that the failure to provide GLBTI-friendly aged-care services is an indirect
form of discrimination (Hughes, 2006; Hughes, 2007).
The effects of discrimination on GLBTI seniors are significant. Discrimination can
result in a lack of social connectedness (McNair et al., 2001) and render GLBTI
seniors silent, invisible and isolated (Age Concern, 2002; Callan, 2006; Leonard,
2003). Isolation is viewed as one of the primary risk factors for elder abuse and
neglect (Cook-Daniels, 1997; Wolf, 1996).
Aged-care service-providers may also be unaware of their legal responsibilities in
relation to GLBTI seniors. The Victorian Equal Opportunity & Human Rights
Commission (2006) identifies that the human rights of all Australians, including
GLBTI seniors receiving aged-care services, are recognised. In particular, under the
Charter of Human Rights and Responsibilities
(2006), public agencies are obliged to
consider that people have the right to enjoy their human rights without discrimination
and the right to enjoy their identity and culture. Additionally, the
Equal Opportunity
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Act
(1995) makes it
unlawful to discriminate against someone on the basis of her or
his sexuality or gender, including discrimination in the provision of goods and
services such as
aged-care services. Furthermore, the
Statute Law Amendment
(Relationships) Act
(2001) recognises that people in same sex relationships have the
same rights as heterosexual couples to authorise medical treatment and access
information about their partner’s health and hospital visitation.
In considering aged-care reforms, it is useful to remember that the attitudes and
practices in aged-care services tend to reflect those of society generally (Osborne et
al., 2002). Therefore, reforms to aged care need to take into consideration the attitudes
of our society regarding whether seniors are acknowledged as sexual beings, or
sexually diverse people. Challenging the cycle of GLBTI seniors’ invisibility could
involve encouraging seniors to disclose their sexual/gender identity and educating
aged-care service-providers, and the community at large, about their needs. However,
anecdotal reports of discrimination in aged-care services indicate that it may not be
safe for GLBTI seniors to disclose. Rather, it may be more appropriate to afford aged-
care service-providers with the support required to create GLBTI-friendly aged-care
services in which seniors feel safe disclosing their sexual/gender identity.
Certainly, there has been a lack of attention to GLBTI concerns within Australian
gerontology literature (Harrison, 2004). However, the focus is slowly shifting. GLBTI
ageing issues have been raised in every state which has hosted public hearings of the
National Human Rights and Equal Opportunity Commission Inquiry into
Discrimination and Same Sex Relationships
(http:www.humanrights.gov.au/human_rights/samesex/index.html) (Harrison, 2006c,
2006d). Additionally, the Ministerial Advisory Committee on Gay and Lesbian Health
has advised the Victorian Government that it needs to understand the issues relevant
to discrimination and invisibility and work to achieve the necessary changes
(Department of Human Services Victoria, 2007).
Others involved in promoting reforms include The ALSO Foundation, which
commissioned a study into the needs of GLBTI seniors (Chamberlain and Robinson,
2002). The study involved interviews with 52 GLBTI seniors to identify their needs.
In response to the findings, the ALSO Foundation established a Seniors Project
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Advisory Committee, which has overseen the development of a seniors information
service brochure, physical and social activities and plans to advocate for culturally
competent standards of aged care (Birch, 2004b). Another group involved in
supporting change is
Inter Section Melbourne
(De Saxe and Lovett, 2008), an
activist group with a web-based presence
(http://www.zipworld.com.au/~josken/ageing.htm#ageing), which takes action in
relation to GLT ageing, including advocating policy change. It also acts towards the
development of programs to make local governments aware of the issues in their
communities, including the issues for older gay men and lesbians.
The challenge of aged-care reforms has also been supported by Matrix Guild Victoria
Inc, a group founded to promote appropriate caring support for older lesbians, combat
ageism and advocate on behalf of older lesbians. Matrix Guild provides a home-based
service run by lesbians for older lesbians who want to stay in their home. It has also
collaborated on a number of small studies regarding the needs of older lesbians
(Bryer, 2004; Testro Gladys, 1997). Similarly, Vintage Men provides support to
mature gay and bisexual men and their friends, including pastoral care to those in
residential aged care. The commitment of Matrix Guild and Vintage Men to the needs
of lesbian and gay seniors led to the development of this Program to challenge the
invisibility of GLBTI seniors.
Program outline
Matrix Guild was concerned about the anecdotal reports of discrimination affecting
GLBTI seniors in aged-care services. In particular, Matrix Guild identified the need to
support change by gathering first-hand accounts of aged-care experiences which could
serve as a catalyst for change. The Guild worked in partnership with Vintage Men to
develop a program that would promote the well-being of GLBTI seniors by
challenging their invisibility in aged-care services.
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The Program aims to support the well-being of GLBTI seniors in Victoria by creating
GLBTI-friendly aged-care services. Such services could assist GLBTI seniors to feel
safe disclosing their sexual/gender identity and ensure that their needs are met. To
achieve this aim four stages were identified and are illustrated in Figure 1 (below).
The first stage, which is the subject of this report, sought to gather evidence of the
experiences of GLBTI seniors in aged-care services in order to support the call for
reform. The second stage aims to determine strategies to enhance aged-care services
by presenting the findings from stage one to aged-care service-providers and seeking
feedback on strategies for change. Stage three will involve lobbying state policy-
makers or government departments with influence, such as the Council on the Ageing,
the Department of Health and Aged Care and the Office of Senior Victorians to
support the required changes which are the focus of stage four.
Figure 1: Program Concept
Program
Aims to reduce
disparities for
GLBTI seniors
in aged care
Stage One
Stage Two
Stage Three
Stage Four
Aim: To
Aim: To
Aim: To lobby
Aim: To
explore the
determine
the Victorian
support aged-
experiences of
strategies to
Government to
care services to
GLBTI seniors
create GLBTI-
support change
create GLBTI-
Phase One
Phase Two
Phase One
Phase Two
To be
To be
25 interviews
3 case studies
3 focus groups
Survey of aged-
determined
determined
describing 19
with GLBTI
with aged-care
care service-
experiences of
Seniors
service-
providers
providers
GLBTI seniors
All stages of the Program are designed to create new understandings and generate
responsive action (Carr and Kemmis, 1986). The critical methodology is concerned
with the identification and eradication of injustice (Kemmis and McTaggart, 2000)
and favours excluded, silenced or subordinated voices over dominant voices to guide
change (Hadfield and Haw, 2001). In this respect, the research project serves to
reinforce the importance of hearing the voices of GLBTI seniors.
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To achieve the aim of reducing disparities for GLBTI seniors, the Program seeks to
engage aged-care stakeholders including service-users, service-providers,
organisational managers and policy makers. The engagement of service users
provides evidence which can increase the potential efficiency of change strategies,
increase the interest of service-providers, create ownership of the issues identified
(Barrett et al., 2005a) and assist in questioning existing practices and beliefs (Bouras
and Barrett, 2007). This engagement, in conjunction with government consultation,
can ensure support for sustainable change (Barrett et al., 2005b). Given the
importance of engaging stakeholders, the methods will be further refined as the
Program progresses to enable Program responsiveness to the stakeholder input. The
methods employed in stage one are described in the following section.
Exploring the experiences of GLBTI seniors
Stage one sought to gather evidence of the experiences of GLBTI seniors receiving
aged-care services. The project involved two phases; the first phase included in-depth
interviews with GLBTI seniors to determine whether some interviewees might prove
appropriate for case-study follow-up. The second phase involved descriptive case
studies with three of the GLBTI seniors interviewed in phase one. Descriptive case
studies provide a complete description of a phenomenon within its context (Yin,
2003). The ‘case’ was defined as the aged-care recipient and the study sought to
record narratives related to their experiences, rather than the aged-care service itself.
The use of multiple studies provided a small amount of comparative data to analyse
findings (Yin, 2004) and enabled exploration of the experiences of a gay man, a
lesbian and a transsexual woman.
Data collection and participant involvement
The primary data-collection technique involved in-depth interviews with GLBTI
seniors. A target of 20 interviews was set, with three interviews being extended to
case studies. To strengthen the data, interviews with ‘significant others’, family
members and care-givers were undertaken. (Yin, 2003) Documentary evidence, such
as legislation and relevant reports was also gathered.
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Participants were sought through the Steering Committee’s networks and paid
advertisements. A project flier was also developed (see Attachment 1) and distributed
through networks including GLBTI organisations and aged-care services.
Advertisements were placed in the GLBTI press and seniors’ publications with an
estimated circulation of four million people. The project was also promoted through
interviews on JOY FM (gay and lesbian radio) and the ALSO Foundation Health and
Wellbeing Festival. The language chosen for the project flier and paid advertisement
was carefully considered. Acronyms such as GLBTI might not be used by seniors
(Cook-Daniels, 1997; Harrison, 2004d; Quam, 1993) and therefore the term ‘non-
heterosexual’ was used in an attempt to ensure that most GLBTI seniors understood
that the project related to them. Despite these efforts a number of challenges were
encountered identifying willing participants.
The challenge of identifying participants
The process of achieving the target number of participants to meet the study criteria
(see protocol on following page) was challenging and time-consuming. While most
participants were recruited though ‘word of mouth’, this required repeated calls for
participants. Contact was made by a number of GLBTI staff working in aged care.
They reported that there were potential participants who were unable to be involved
because they feared negative repercussions. Furthermore, a number of aged-care
service-providers expressed reluctance to distribute project fliers. They believed
GLBTI seniors who were in the closet might be distressed if heterosexual clients
responded in a homophobic manner to the fliers.
The study sought to interview intersex seniors. Intersex people are reported to
experience unique physical and psychological issues as they age (McFall Sullivan,
2008). However, no intersex seniors were identified through the advertising
processes.
Another challenge related to identifying lesbian participants. The apparent reluctance
of lesbians to volunteer was discussed with a number of participants. These women
speculated that older lesbians were more closeted than gay men. One lesbian
receiving home services suggested that:
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They are being protective. I think gay men have come out so far, they
have carried the banner as it were. I don’t mean that the women haven’t. I
think once the gay men came out they really came out. After all those
years of persecution and being jailed they must have just wanted to be free
of this whole discrimination thing. Even when I was in my twenties you
could spot a gay man a mile off because they were limp-wristed and
mincey. People would joke about them and point at them and laugh at
them, there was nothing hidden. I’m not backward in coming forward. I
could imagine that some older women would be terrified of talking to
someone about themselves and even more terrified of tape-recording or
being written up. Terrified of coming out really even if it was just to you.
They might be utterly and completely closeted (Susan, 77 years, lesbian).
While these differences between older gay men and lesbians are not well explored in
the literature, other researchers have reported difficulty identifying GLBTI seniors
who are willing to participate in research studies (Quam, 1993). In response to this
challenge researchers have found it necessary to involve middle-aged participants and
ask them to envisage the challenges they might face as they age (Quam and Whitford,
1992). However, given that the study reported here sought to explore the experiences
of aged-care services, considerable effort was required and employed to identify
participants.
Study protocol
The study protocol described the need to recruit a group of participants who were
willing to share both positive and discriminatory experiences in aged-care services,
and were able to provide a balance of sexual/gender identities and a range of aged-
care service experiences. To achieve these criteria, 14 interviews were conducted with
aged-care recipients and a further five interviews were conducted with partners and
friends of aged-care service recipients, as well as aged care service-providers. Those
five interviewees recounted stories of discrimination incurred by aged-care recipients
who were either deceased or not empowered to tell their stories themselves. It was
anticipated that allowing others to tell stories on behalf of aged-care recipients would
give a voice to GLBTI seniors who had been silenced.
Interviews were digitally recorded, transcribed and the notes provided to participants
for verification and de-identification. Interviews were semi-structured and allowed
participants to tell their story at their own pace and within their comfort levels. A
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checklist of items to be covered over the course of interviews was developed. It
invited each person to describe:
• Their perceptions and/or experiences of being GLBTI in the twentieth century
• Their needs as a GLBTI senior
• Their experiences of disclosing their sexual/gender identity
• Any positive experiences of aged-care services
• Any discriminatory experiences of aged-care services
• The impacts of aged-care services on their lives
• Any changes required to make seniors feel safe disclosing their sexual/gender
identity.
Case-study participants were involved in a number of interviews (three to four) and
identified ‘significant others’ such as family or carers who were willing to be
interviewed to share their insights into the story.
Participant characteristics
Interviews were conducted with 25 participants. The interviews investigated the
stories of 19 aged-care recipients (see Table 1). In addition to stories told by the aged-
care recipients (14) themselves, stories were shared by partners (2), a friend (1) and
aged-care service-providers (2). Case-study interviews were complemented by
interviews with significant others including carers (2) and family/friends (2). The
stories recounted experiences in aged-care services including: home care (9), nursing
homes (7), hostels (2), a psycho-geriatric residential facility (1) and day-care centres
(2).
The aged-care recipients had an average age of 72 years (56–87 years) and included
seven women as lesbian (7), and eight males who identified as gay or queer (8), two
bisexual males (2) and one transgendered woman. Most participants lived in the
Melbourne area (13) and almost half had a current partner. Project advertisements
also identified a number of willing interviewees who were not receiving aged-care
services. One such interview was conducted with a 47-year-old transsexual lesbian,
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who provided valuable insights into challenges encountered working with residents
with dementia. A number of aged-care service-providers made contact with the
researcher to share their experiences regarding the barriers and enablers to creating
GLBTI-friendly aged-care services. One interview was conducted and will be
reported on in stage two of the program.
Table 1: Characteristics of Stage One GLBTI consumers of aged-care services
No Name Age Identifies as Aged-care service Interviewees
1 Anne 77 Lesbian Home care Anne
2 Sara 63 Lesbian Home care Sara
3 Janet 58 Lesbian Home care then nursing
Janet
home
4 Joseph 61 Queer Home care Joseph
5 Robert 75 Gay Home care Robert
6 James 64 Gay Hostel James
7 David 87 Sexual Home care David
8 Keith 84 Gay Hostel Keith
9 Margaret 56 Lesbian Day-care centre Margaret
10 Ian 73 Gay Nursing home Roger: partner
11 Susan 77 Lesbian Home care Susan
12 Elizabeth 72 Lesbian Home care & day care Elizabeth
13 Bill 71 Gay Home care & nursing
Steven: partner
home
14 Doug 68 Gay Psycho-geriatric
Tim: partner
residential care
15 Anthony 84 Bisexual Nursing home Paul: aged-care nurse
16 Charles 84 Bisexual Nursing home William: aged-care chaplain
17 Tom 64 Gay Nursing home Tom, Kathleen: mother, Lizzi:
Community Liaison Officer
18 Thelma 67 Lesbian Palliative care Maureen: partner, Jean: friend
19 Nancy 79 Transsexual
Residential aged care Nancy, Maggie: nurse
woman
Data analysis
The data from case-study interviews was analysed to construct narratives which were
reviewed by participants. Each case study was analysed as an independent case and
then returned to the participants for verification. Next, findings which were replicated
or contrasted across the cases were identified (Yin, 2004) and presented to
participants for feedback.
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The remaining interviews were subjected to thematic analysis using the five stages of
‘Framework’: familiarisation; application of a framework; indexing; mapping and
interpretation (Ritchie and Spencer, 1994). These stages involved:
1. Familiarisation: listening to each interview in order to become familiar with it
and transcribe notes for participant verification.
2. Indexing: sorting each interview into themes.
3. Application of study framework: Sorting the themes from individual
interviews into a report structured around the study themes or questions and
identifying new themes not covered by the study questions.
4. Mapping: Reviewing the report to make connections between the themes and
identify shared or differing experiences.
5. Interpretation: Considering the structure of the report, contrasting with the
research literature and reporting a summary of the issues.
Credibility and trustworthiness
To maximise the value of the study’s findings, particular attention was paid to the
methodological approach employed in the research. The trustworthiness and
authenticity of the methods were considered to ensure that the study was credible, or
did not contain:
biased distortion of data
(Patton, 2002). Authenticity is described as
giving:
direct expression to the ‘genuine voice’, which ‘really belongs’ to those whose
life-worlds are being described
(Winter, 2002). To promote the genuine voices of
GLBTI seniors, participants were provided with interview notes for verification and
case-study participants were given the opportunity to verify the reflections on their
stories. Increasing the trustworthiness of the study by making the study practices
visible (Sandelowski, 1993) was achieved by developing an audit trail, or list of
project records providing a picture of what occurred (Kemmis and McTaggart, 1982).
In case-study research, attention to validity and reliability is required to increase the
robustness of findings (Yin, 2003). This was achieved by gathering multiple sources
of evidence, undertaking participant verification of narratives, documenting a case-
study protocol and pattern-matching between the study findings and the predicted
pattern of non-disclosure and unmet needs (Yin, 2003).
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Ethical considerations
A study protocol highlighting the ethical considerations was developed and reviewed
by the Steering Committee. The document complied with the Australian Code for the
Responsible Conduct of Research (National Health and Medical Research Council,
2007). Ethical approval was also gained from the Victorian AIDS Council Ethics
Committee in relation to an interview with a client of their service. All participants
were provided with a plain-language statement describing the study and the possible
risks, such as the potential distress for participants when recalling discriminatory
experiences. All participants signed a consent form before interviews were conducted.
Ethical considerations included the need to protect confidentiality and the possible
vulnerability of participants who were providing the critique of a service on which
they were dependent. Copies of the information sheet and consent form are provided
in Appendix Two.
Strategies employed to protect participant confidentiality included inviting
participants to review interview notes and case-study reports to de-identify their
service and themselves. To protect their identity, most participants also chose a
pseudonym. A smaller number requested that their preferred name was used, as they
were confident that this would not have negative consequences for them.
Four participants reported emotional upset at recounting painful experiences such as
the loss of a partner, shock therapy, discrimination or sexual abuse. The upset was
articulated by Elizabeth, who recounted experiences of discrimination and reported:
I found it difficult after the interview and reading the notes. It raised
things for me that have been dormant for a long time. I found myself
withdrawing from people again. I think that because it was an affable
interview it raised things that have been squashed and I realised afresh
things from my past
(Elizabeth, 72 years, lesbian).
Elizabeth and other participants were provided with the opportunity to withdraw from
the project and given information for external counselling and support. However, in
each case participants expressed the desire to continue. A number expressed the desire
to tell their stories so that others could learn from their experiences.
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Conclusion
In the following sections the findings are presented, beginning with a summary of the
thematic analysis, which is followed by the presentation of the case studies. Given
that few studies have gathered first-hand accounts of the experiences of GBLTI
seniors in aged care, this study provides new and useful insights. The qualitative
findings represent the experiences of a small number of GLBTI seniors. In this
respect, the research does not claim to be reflective of all GLBTI senior experiences.
The intent of the study was not to make generalisations about this larger population.
Indeed, the aim of the exploration reported in this document was to present the voices
of 19 aged-care recipients in the hope that this stimulates debate and provides an
urgently required motivation for change and further research.
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Findings from interviews
The key findings from the study are drawn from a number of themes which emerged
in relation to the experiences of GLBTI seniors. Six themes or core issues were
identified:
1. The impact of historical experiences of discrimination
2. Invisibility as an impact of current discrimination
3. The impact of identity concealment
4. The impact of inadvertent visibility
5. The impact of dementia
6. Enabling sexual and cultural expression.
These themes are briefly outlined in the following section and explored in greater
depth in the case studies. A further two themes regarding inadequate standards of care
and achieving a safe environment will be described at the end of the report.
1. The impact of historical experiences of discrimination:
‘Cop it sweet and shut up’
Most interviewees shared disturbing stories of the experiences of coming of age in the
early twentieth century. These stories provide an important context for their
expectations and experiences of aged-care services. In particular, having experienced
discrimination, many participants expected that it was not safe to disclose their
sexual/gender identity. One such example was provided by Joseph, a former police
officer, who recounted:
I have seen discrimination the few places where I was doing active police
work. They’d raid a toilet or the beach. They only prosecuted single men.
It was just blatant discrimination, they were picking on what they thought
was a soft target – gay men. The police thought ‘God only knows what
they are getting up to in the tea trees’. Their actions weren’t going to be
criticised if they just stuck to victimising those chaps because the gay
community wasn’t quite as outspoken. This was before 1988. You’d cop it
sweet and shut up (Joseph, 61 years, queer).
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This experience left Joseph with no doubt that discrimination occurred. and as a
consequence he felt that it would be safer not to disclose his sexual identity to his
carers. Furthermore, despite recounting a number of stories indicating that his carer
was homophobic, he continued to live by the adage, ‘cop it sweet and shut up’.
Other participants described how their sexuality was considered to be illness. Susan, a
63-year-old lesbian, described how a friend of hers who was a student nurse received
‘jump start’ or shock therapy in the late 1950s after telling her nursing tutor that she
was attracted to females. Susan recalled her friend saying:
It was meant to teach me
how to be straight, but all it taught me was to keep my mouth shut
. Similarly, James
described his experience of being given ‘shock therapy’ after he identified to his
parents that he was sexually attracted to men. James remembers:
I ended up in a psych[iatric] ward. I was in and out for months and I
didn’t know why I was attracted to men so I had to go to a psychiatrist. He
told me he thought I was gay. They gave me shock treatment because I
was stressed out and panicking and I didn’t know what I was. They
reckoned homosexuality was a sickness. But I don’t believe it’s a
sickness. Because you love the same sex doesn’t mean it’s a sickness
(James, 64 years, gay).
While both gay men and lesbians reported discrimination, their accounts differed. A
number of lesbians reported the pressure to be ‘nice’ or not attract ‘unfavourable
attention’ by being a lesbian. For example, Anne explained:
How women were taught to be self-effacing. A lot of older women try not
to attract unfavourable attention, and once it was noticed that you were a
lesbian it perhaps went against them. They became very good at keeping
quiet, some of them (Anne, 77 years, lesbian).
Pressure to deny same-sexual/gender difference was also encountered from the church
and from families. Elizabeth, a 72-year-old lesbian, described how she learned from
her church that being same-sex attracted was an ‘anathema
’
and felt devalued as a
consequence. Similarly, James, who identified as gay, told his mother in the 1960s
that he was going to have gender reassignment surgery and describes that she
responded by saying,
I gave birth to a boy, not some Sheila, some girl. If you [have
the gender reassignment surgery] I’ll disown you altogether
(James, 64 years, gay).
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These historical experiences highlight the discrimination the current GLBTI seniors
experienced from the police, the medical profession, the community, the church and
their own families. It is not surprising that these experiences created the
understanding for some GLBTI seniors that their sexual/gender identity was not
valued.
2. Invisibility as an impact of current discrimination
In describing the challenges growing up in the early twentieth century, a small
number of participants explained their efforts to challenge discrimination. One such
participant was James who recounted how a resident in his hostel called him a
‘poofter cunt!
’
In response James rebuked the resident and reported him to the hostel
manager. When asked whether he felt hurt by the resident’s abuse James replied:
I
didn’t feel hurt, because I spoke up. If I didn’t speak up it would have hurt my feelings
something awful
(James, 64 years, gay). Similarly, Anne challenged discrimination
when it occurred and suggested that:
To quite an extent these days, how you are received and accepted depends
quite a lot on the image of yourself that you put forward. If you come
across as confident and matter of fact: ‘Yes, that’s right I am [a lesbian],
got any problems?’ People either don’t say anything or it’s generally
something positive (Anne, 77 years, lesbian).
More frequently participants described responding to discrimination with the
reinforced belief that their sexual/gender identity was not valued. This was described
by Robert as internalised homophobia, or:
an insidious process stemming back from
childhood and learning to hate oneself because of external homophobia. John
Howard [ex prime minister] alone is enough to give it to you
(Robert, 75 years, gay).
Similarly, Elizabeth grew up understanding that her sexuality identity was an
‘anathema’ to the Christian church she was part of and reflected that:
The problem is that part of you believes that you are an anathema. It
affects your self-esteem and things like that. The effects are insidious. The
thing that I have worked out is that if you know something and can work
it out intellectually it has less power. But the problem is that a lot of this is
so insidious you can’t work it out and so there it still retains its power and
that’s the problem (Elizabeth, 72 years, lesbian).
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Some participants also described more contemporary experiences of discrimination
which affected their sense of self-worth. Paula, a 47-year-old transsexual lesbian,
described recent gender reassignment surgery and her brother’s response that she:
… shouldn’t tell his children I was having the surgery. So I didn’t see
them for five years. The way I see it prejudices are built into people. My
niece was about 11 years old when I transitioned. My brother said they
were too young to know - they might have got hassled at school (Paula, 47
years, transsexual lesbian).
While participants reported that they had witnessed enormous changes over their life
time, a number were aware that discrimination still existed. This understanding was a
factor in the reluctance of most seniors to disclose their sexual/gender identity to
aged-care service-providers.
Disclosure to aged-care service-providers
A small number of participants chose to disclose their sexual/gender identity to
service-providers. Anne described how she would disclose if she was questioned
about her sexuality. However, she added,
I neither avoid it nor push it forward. It’s
just a fact about me. Like the fact that my hair is going grey and I’ve lost a lot of
weight recently
(Anne, 77 years, lesbian).
By contrast, most participants believed that they needed to hide their sexual/gender
identity to avoid discrimination. For example, Keith reported that he would not tell
staff in his hostel that he was gay because,
it would be a surprise for people to know I
was gay. Disappointment would be a better word. They would be disappointed; they
would think less of me
(Keith, 84 years, gay). For Keith, part of the cost of
maintaining a heterosexual façade was that he was unable to access his much-loved
sex toys, gay DVDs and magazines.
Other participants reported receiving the message that homosexuality was
unacceptable. Joseph described how his home carer saw him watching a movie
starring gay actor Rock Hudson and said,
Oh, what a waste!
On another occasion
when Joseph
made reference to the carer about his need for a bath, he said:
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‘I would rather people think I was homosexual than dirty’. And she [the
carer] said, ‘Oh, you would not want them thinking you’re one of those
would you?’ I don’t know what she’d think if she opened one of the
bedside tables and found
Transsexual Climax
magazines there or
something. Struth! (Joseph, 61 years, queer).
Two participants reported more direct discrimination when they disclosed their sexual
identity. For example, Roger described how his friend Ian was treated with ‘contempt’
by carers who did not value his sexuality:
The personal assistants were homophobic in my view. There were about
three other gay residents; [and] they just treated those guys with contempt.
If Ian pressed the buzzer they’d say, ‘Yeah! In a minute’.
They were sort
of staying away from him; because he was gay, because they might catch
it. There was ignorance and intolerance and [inability] to actually see a
person for a person, not as a sexual identity. If Ian had been a barrister or
something like that I imagine they would have given him a different
treatment. If he’d been [married and] his wife died two years ago. I am
almost sure he would have got a bit of different reaction (Roger for Ian,
73 years, gay).
Roger reported that Ian experienced a homophobic response from most of his carers,
but predominantly when staff had,
come in with different cultural values, particularly
in countries where sexual diversity is more frowned upon
(Roger for Ian, 73 years,
gay). Similarly, Janet experienced the discrimination when she was approached by the
Director of Nursing in her nursing home who told her that,
The Muslim girls who
worked there objected to the lesbian porn videos that I had
(Janet, 58 years, lesbian).
Janet was perplexed at this feedback, as she didn’t have any pornographic videos and
could only speculate that a staff member had seen her watching a television series
called
Queer as Folk.
The challenge experienced by Janet and others highlighted the
need for staff training to ensure that providers understand the legal and ethical
responsibilities they have in relation to GLBTI seniors.
3. The impact of identity concealment
The pressure of being identified as GLBTI for those who were closeted was a
significant burden. For example, Joseph described his fear that he would be outed if
his carer found some of his sexually explicit magazines. While he believed he should
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not have to hide his sexuality in his own home, he also felt that unless he did he
would be unable to retain his carer.
The pressure of concealment was intensified for participants in shared services such
as day centres, nursing home and hostels, who needed to consider disclosure to other
residents as well as staff. This was highlighted by Margaret, who made the decision to
disclose to other residents in her day-care centre. In response Margaret reported that
co-clients ridiculed her because she was a lesbian:
I get called a ‘fucking thing’ in
here and everything, and ‘a poor excuse for a bloody woman
’ (Margaret, 63 years,
lesbian).
Other participants described how being closeted meant that they could not be
themselves. Elizabeth explained how she attended her local day care centre four times
a week and how,
In none of those sessions I feel I can be who I am
(Elizabeth, 72
years, lesbian). For her there was a sense of loss and devaluating at having to hide an
important part of herself. Conversely, three participants described how important it
was for them to disclose their sexual/gender identity so that they could be themselves.
To protect themselves from discrimination, each waited until carers got to know them
as people before they disclosed. As Janet described of her home carers,
I usually built
up a relationship first. I was scared of rejection I think. I wanted them to relate to me
as a person first. It’s a bit stupid
(Janet, 58 years, lesbian). For Janet and others, being
accepted as a person correlated with having their needs understood and met. However,
not all participants were able to make carefully considered decisions about whether or
when to disclose.
4. Longing for touch: exploitation and vulnerability
The importance of understanding the issues around GLBTI ageing were highlighted in
a story shared by William, a chaplain working in a nursing home. William recalled the
story of Charles, an 84-year-old man who was admitted to the nursing home with his
wife. William described Charles as,
not in any way severely demented, but there were
some cognitive losses there, and emotionally he was so alive
. William added that for
Charles, after the death of his wife,
the issue of his own sexual identity surfaced
.
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William felt that Charles was attracted to men and as a consequence a male staff
member:
… allowed a sexual encounter to happen between them. This personal-
care attendant would have attended to his showering, so would have been
with him when he was naked. The old man probably welcomed any sort of
physical contact and then there was this incident where the young man
allowed himself to be touched (William, for Charles, 84 years).
The sexual encounter was observed by a staff member, then reported, and the male
staff member was sacked. In his role of chaplain William was asked to provide
Charles with support. When they met William felt that Charles was grieving over the
staff member who had left and when asked about what happened Charles said,
It was
so
lovely
. Over a number of support meetings William assessed that Charles had:
… a deep and desperate longing for human touch and particularly contact
with another man. Simply this deep longing, I think, to gain some
expression of what was within him. People of his vintage didn’t really
have the words, they just had the feelings and they weren’t sure what to
do with them (William, for Charles, 84 years).
However, William also noted that while Charles was happy that there was,
A
vulnerability around being a gay man in aged care and they can be taken advantage
of, particularly when there is longing for touch and attention
. This vulnerability was
exacerbated by the fact that staff in the nursing home could not conceive that Charles
was sexual, let alone gay. Perhaps as a consequence staff could not conceive that a
male resident would need to be protected from a sexual encounter with other males.
5. The impact of inadvertent visibility
A number of participants encountered discrimination when their identity was exposed
to aged-care service-providers. In particular, being HIV positive or transgender,
having a same-sex partner or having dementia were factors which exposed
participants’ sexual/gender identity.
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HIV positive
Case study two is the story of Tom, a gay man with HIV/AIDS living in a nursing
home. While Tom decided to hide his sexual identity, his carers made an assumption
that he was gay because he was HIV positive. Similarly, it became apparent from
other interviews that some aged-care service-providers consider that being gay and
HIV positive were mutually inclusive. This is of particularly concern, because it
meant increased levels of discrimination from staff who were worried that they could
contract HIV by touching a gay man. Steven described how a home carer was
showering his partner Bill and became aware that they were gay:
The carer wouldn’t really shower Bill after that. Bill was blind, deaf, full
of arthritis and needed all the help going. I think the carer was concerned
that we were gay. The guy thought, ‘He’s gay and has he got something
else wrong with him?’ He was worried about HIV/AIDS. That’s what I
think. I phoned the council and told them. They were very good. I told
them I didn’t want him back (Steven, for Bill, 71 years, gay).
Similar staff ignorance was communicated by Paul, a nurse working at a hostel. He
described the response of a personal-care attendant when she realised that a resident
was gay:
She threw her hand in the air and started shaking it and going, ‘Ooh! Ooh!
I shook his hand this morning’. She was implying that she felt filthy
because she touched a gay man. She said, ‘I just don’t know where his
hands have been’ (Paul, 40 years, nurse).
These stories highlight the challenges encountered by some gay seniors when aged-
care service-providers make the assumption that all gay men have HIV/AIDS and that
the virus can be spread by touching them.
Transgender visibility
Transgender participants described the visible nature of their gender identity and the
subsequent exposure to discrimination. This was particularly apparent in the story told
by James, a 64-year-old gay man living in a hostel. Dressing as a woman was
critically important for James’s mental health, and so he had an assortment of dresses,
wigs and make-up in his hostel room. While James chose to share his cross-dressing
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with his carers, it would have been impossible for him to cross-dress without their
knowledge, given his lack of privacy. Indeed in a previous special accommodation
unit, James was told that he was not allowed to cross-dress.
Having a partner
Three participants described the presence of their same-sex partner as making their
sexual identity apparent to carers. Two of these participants, who were receiving
services in their own home, felt that it was important to disclose their sexual identity
to carers because it was so apparent. Steven shared his efforts to convince his partner
Bill to disclose:
Well people have got to know. They are going to be in our environment,
so let’s tell them now. They have to know, they are going to be in our
home. Bang! Wherever they look there will be photos of you and I
together. No grandchildren, no wife, no nothing. I just felt it was getting
to that stage where I had to (Steven, for Bill, 71 years, gay).
Steven disclosed to carers and generally received a positive reaction. However, one
carer would not touch Bill after realising that he was gay. In response Steven rang the
local council and requested that this staff member not return. For participants in
residential aged care, this choice was not available. Consequently, some continued to
receive care from staff who obviously disapproved of their sexual/gender identity. In
a similar manner, participants with dementia faced unique issues.
6. The impact of dementia
The challenge of living with dementia was highlighted in a number of interviews. One
particularly powerful story was shared by Tim who gave an account of the grief
associated with having to move his partner Doug to a psycho-geriatric residential
facility. Having lived together for 45 years, Tim described the difficulty he faced
leaving Doug who pleaded to be taken home:
[I would say to him], ‘It’s not because I don’t love you. You know I love
you with all my heart but I have to try and do what’s best for you’. It was
very difficult, very heartbreaking. Someone that you’ve lived with all
those years and you know that they are not going to go home with you.
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That’s difficult especially when you go in and see him. Having to leave
him there is very, very difficult. You feel that you want to pick him up
and take him home. But you know you can’t because you know he needs
24-hour care (Tim, for Doug, 68 years, gay).
For Tim it was important that the staff caring for Doug understood the challenge that
both he and Doug were experiencing. Tim explained that staff needed to understand
that his emotional pain was no different from a heterosexual person’s pain. He argued
that:
Staff training is needed just to understand that a person might be gay. You
know that a gay person is going through the same trauma as a
heterosexual couple would be if their husband or wife got dementia. They
go through the same grieving side of things. Their partner is not the same
person that they met and feel in love with and they are never going to
come home. I think it’s important to understand that gay people go
through the same pain. They’re a gentle, loving, kind person who loves
their partner like I do with Doug. I’m going through the same pain. I think
staff need to be told dementia just doesn’t categorise, it doesn’t say I’m
just hitting the gay community, it just hits anyone. It goes across all
people, heterosexual, bisexual or gay people and everyone is going
through the same pain with their partner (Tim, for Doug, 68 years, gay).
The nature of Tim and Doug’s relationship was questioned at the time of Doug’s
admission by the activities co-ordinator. Tim reported that it took time for staff to get
to know him and understand that his relationship with Doug was as important, and
their challenges were as difficult as for a heterosexual couple. However, Tim also
noted that he received a particularly positive response from a gay nurse:
[He would come up to me] and put his arms around me, sometimes gives
me a kiss on the cheek and say, ‘How are you, darling?’ That’s good; it’s
nice that that is there. [None of the other staff do that] but they always say
hello how are you? (Tim, for Doug, 68 years, gay)
Tim reported that he was able to achieve understanding and support from this gay
carer and that other carers and families provided him with support once they got to
know him and understand him. A further challenge encountered by Doug and other
interview participants was the dis-inhibited behaviour of other clients with dementia.
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Co-residents with dementia
A number of participants described the challenge of sharing services with
homophobic residents who had dementia. Tim recalled:
One [resident], when I was giving Doug a kiss goodbye, just went, ‘Ugh!’
Then one said, ‘Are you a fag?’ And I said, ‘Well yes’. But then she’s got
problems here [in the head]. She seems to be OK now, she’s only ever
said it the once. I think they have got used to me coming in all the time
(Tim, for Doug, 68 years, gay).
Such dis-inhibited responses from seniors with dementia were also reported by James
who was frequently called a ‘poofter cunt’ by a co-resident. James recalled that the
abuse continued despite staff’s intervention, because the resident had dementia and as
James articulated,
You can’t tell mental people what to say
(James, 64 years, gay).
For both Tim and James the support of staff in managing homophobia from other
residents was important. This advocacy role was highlighted powerfully in Nancy’s
case study, in which her carer intervened to prevent transphobic abuse. However,
other participants described the reluctance of homo/transphobic staff to protect them
from discrimination. Furthermore, Janet described the response from a homophobic
aged-care service-provider to the challenges she experienced living with residents
with dementia:
I am intruded on day and night by other residents on a daily basis
repeatedly. They take no notice when I complain. They are supposed to
give you privacy but I haven’t had it. And it is absolutely driving me mad
and making me very depressed and I have never been as depressed as I
have been since I have been here, for a lot of reasons. Why should I have
to put up with it? They think it’s funny sometimes. The carers, they are
called carers, they are untrained workers and there is nothing caring about
most of them. It is very much a misnomer. One day, there’s a little guy
here, a resident, and he was a real pest at entering the rooms. He came in
here and masturbated during my dinner one night. I buzzed and no one
came for 20 minutes. When they came they thought it was really funny.
He was at the door another day trying to come in. The nurse was outside
the door; she said in a loud voice, ‘Oh, don’t go in there, she doesn’t like
men’. I thought that was quite homophobic actually, and that is not the
case anyway. I didn’t respond to it at all. It was obviously said in such a
loud voice that I would hear. If I had responded I would have had got into
strife with her and there would have been a lot of bitching (Janet, 58
years, lesbian).
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The challenge of being GLBTI and having dementia or sharing services with co-
clients with dementia placed participants at greater risk of discrimination. This
highlights the importance of engaging aged-care service-providers in understanding
the needs of GLBTI seniors and advocating on their behalf.
7. Enabling cultural and sexual expression
The importance of cultural and sexual expression was raised by a number of
participants, particularly those who had a partner and those recently separated. Anne
reflected on her relationship and its importance:
We think we are very lucky to have
each other. It is just very supportive and reassuring to have somebody like her and
she says somebody like me to back up to
(Anne, 77 years, lesbian). The importance of
relationships and touch was described by Steven, who recalled how his partner Bill
was admitted to a nursing home:
[He] was blind, couldn’t hear and touch was important. He needed me. So
I would give him a kiss him on the forehead, get my arms around under
the wheelchair and hug him and we would sit just holding hands, I have
got to look after my friend; he’s in a bad way. I have got to be there for
him as much as I can (Steven, for Bill, 71 years, gay).
In Steven’s interview it was apparent that touch was a way for him to connect with
Bill, to comfort him. Similarly, James described how he felt when his partner of 47
years was admitted to a nursing home and they had less contact:
If I am not touched I
don’t feel loved. I need to be touched. I miss that.
James missed his partner’s touch so
much that he said,
I was going to drink poison to kill myself
(James, 64 years, gay).
Separation from a partner limited the capacity for sexual expression and it was
considered important that staff understood and supported such sexual expression.
Privacy
Participants who were more dependent appeared to have less privacy and
opportunities for sexual expression. The challenge of limited privacy was particularly
noted in hostels and nursing homes, where residents’ rooms could be accessed by staff
and co-residents. Consequently, participants recounted the impossibility of keeping
GLBTI-related materials such as community newspapers in their rooms without
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expecting to be outed. This resulted in limited opportunities for sexual expression and
a sense of disconnection from the GLBTI community. Keith reported that he was able
to watch some gay TV in his hostel room at night if he had his hand on the remote
control, ready to turn it off if staff entered the room. Keith also reported that when he
entered the hostel he had to leave his sex toys at home because he knew that he would
not have enough privacy. When asked whether it was possible to lock his door Keith
replied,
That’s a dangerous thing because the staff would want to know why you were
locking the door. I really had to say, ‘None of that
’ (Keith, 84 years, gay). While
Keith said ‘none of that’ he took great delight during our interviews sharing images of
the gay men he had inserted into pages of a
National Geographic
magazine.
Available resources
Participants with physical disabilities often lamented their limitations and the
compromises they presented in terms of requiring aged-care services. Several
interviewees noted that if they had available funds their life would change because
they could access the care they desired, rather than the care that they could afford.
Roger described scouting for a suitable nursing home for his friend Ian. He observed
that there were homes where,
the
atmosphere and the people in the place seemed
enthusiastic and it was effortless for them to, not only to deal with their clients, but to
deal with the people who were coming and observing what they were doing.
However,
without sufficient finances Ian was forced to accept a facility where he was unable to
express his sexuality.
Service-provider control and resident autonomy
One of the key factors influencing opportunities for sexual and gender expression was
the extent to which aged-care service-providers maintained control over residents. For
example, Keith compared his hostel room to his home and speculated:
If I was at home I would have my porno photos out, stuck up on the wall.
I have brought some with me; I keep them in the drawer. I didn’t put them
up because I would cause a sensation. The staff would say: ‘Get that
down.’ It would change the way I was cared for, for the worse. It’s the
sort of thing that you just wouldn’t put up in a place like this. In your own
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private home, yes, but not semi-public place like this (Keith, 84 years,
gay).
The potential for staff disapproval and a reduced standard of care reduced Keith’s
capacity for sexual expression. While this censorship was implied, others illustrated
more explicit forms of censorship. Paul, a nurse working in aged care, described his
visit to a hostel over a twelve-month period and observed the care provided to two
transgender residents:
There were two guys who were cross-dressing. One was full make-up and
frock, frilly knickers and bras, the whole lot and wigs. When I worked
there recently both of them had stopped. These guys had lived on the
streets and in rooming-houses and had a really, really tough life and they
have managed to continue to cross-dress throughout their whole lives.
They go into an aged-care facility run by [names the Catholic institution]
and it’s just stamped out. People laughed about it; it was a bit of a joke. It
was whispered about, it wasn’t spoken about as a matter-of-fact sort of
thing. I am certain you wouldn’t find it in their care plan (Paul, 40 years,
gay nurse).
The capacity of workers to provide understanding and to support the need to cross-
dress was highlighted by James. At the time of the interview, James reported that staff
allowed him to cross-dress and that:
The staff could have said to me I can’t dress up
in drag but they didn’t say that. They said it’s all right. I did a concert here in drag.
The staff said, ‘Don’t get high-heeled shoes because you might fall
’ (James, 64 years,
gay). In a contrasting experience James described how staff in a special
accommodation unit prohibited him from cross-dressing and recalled:
Dressing as a woman is lovely. It makes you feel good. When you’re a
woman, you
are
a woman. When you’re a man you feel depressed. Your
mind is trapped. I have got more female hormones that I’ve got male
hormones. You feel like you’re a woman trapped in a man’s body. When I
dress as a woman I feel on top of the world, you know that there is
nothing missing about me. If you think there is something missing you are
very depressed. In the special accommodation they wouldn’t have you
dress as a woman. I felt a bit unwanted. I thought there was something
missing. I was starting to get depressed and feel suicidal. Not being
allowed to dress as a woman, I reckon it’s discrimination (James, 64
years, gay).
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The story told by James portrays the importance of sexual expression and suggests the
capacity of aged-care service-providers to enhance the lives of GLBTI seniors by
supporting such expression.
Family control
Opportunities for sexual expression were sometimes controlled by families. A number
of participants who required nursing home or hostel care relied on families to
advocate for them with the aged-care service. However, it appeared that some family
members took advantage of this dependency and the opportunity to control sexual
expression through a number of means, including preventing access to participants’
partners.
One poignant example of the capacity of staff to facilitate sexual expression was told
by Paul, a nurse working in aged care. He shared the story of Anthony, an 84-year-old
man who was admitted to a nursing home. On the admission assessment the Activities
Officer was told by Anthony’s wife that his hobby was making pornographic videos
of young boys. Anthony’s wife then recounted her experience of discovering Anthony
in their home filming a sexual encounter with a male escort. As a wealthy man
Anthony had the resources to remain at home with carers. However, after witnessing
this sexual encounter, Anthony’s wife refused to continue supporting his home care
and Anthony was admitted to a nursing home. Paul observed that most staff were
aware of the circumstances of Anthony’s admission and while Anthony was
a pretty
likeable guy, no-one seemed to particularly like him.
Certainly staff disapproved of
his use of the male escort. When he attempted to book an escort to visit the nursing
home the nurse-in-charge intercepted the call and cancelled the escort. In reflecting on
this, Paul suggested:
Anthony must have noticed it was cancelled but didn’t say anything
because he probably thought he was breaking the rules, which of course
he wasn’t. Maybe he was ashamed. For the rest of his life he is not
allowed to have sex, even though he is clearly sexual (Paul, 40 years,
nurse).
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Anthony’s story highlights the potential of both families and staff to control
opportunities for sexual expression. It also highlights the blurred boundaries that exist
when staff do not appear to understand the needs of GLBTI seniors, nor the rights that
residents have to maintain a degree of autonomy.
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Seniors’ Stories
Phase two of the study involved exploring the experiences of GLBTI seniors in
greater depth through three in-depth stories (case studies) from a gay man, a lesbian
and a transgender woman. The stories begin with an introduction. The participants
then speak for themselves, with expletives and colloquialisms retained.
Story 1: ‘Why not take all of me?’ Living with HIV/AIDS in a
nursing home
I miss the intimacy of male company. I'm in a nursing home, it’s not my
real home, there’s no privacy and there are rules. I’m not able to live a gay
man’s life in a nursing home. I would prefer to be living in my own home
with carers and with the gay community at my fingertips. I see the gay
magazines when I go out to pubs but I couldn’t bring them back here
(Tom, 64 years old, gay man).
Written by Catherine Barrett and Lizzi Craig
Tom’s story
Tom was a 64-year-old gay man with HIV/AIDS living in a public nursing home.
Kathleen, his 85-year-old mother, and Lizzi, his Community Support Officer from the
Victorian AIDS Council, were also interviewed. As a relatively young and cognitively
intact man, Tom was already out of place. The majority of people in residential aged
care are older than 75 years and have dementia (Australian Institute of Health and
Welfare, 2002a). These differences exacerbated the strangeness Tom felt as a gay man
with HIV/AIDS living in a nursing home.
If asked to care for someone like Tom, many aged-care service-providers would have
few resources to guide their practice. Documents which govern aged care require that
staff ensure that residents’
individual interests, customs, beliefs and cultural and
ethnic backgrounds are valued and fostered
(The Aged Care Standards and
Accreditation Agency Ltd, 2006). However, this guideline is very broad and is more
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likely to be interpreted as making reference to the needs of a resident not born in
Australia rather than the cultural needs of a gay man. The need for specific
information to inform practice is imperative, because people with HIV/AIDS are
living longer and will increasingly require aged care (Sellers and Angerame, 2002).
Given the deficit of knowledge in this area, Tom’s story provides valuable insights.
Indeed, the case study highlights the difficulty Tom’s carers had in understanding his
cultural needs and the isolation and loneliness that resulted. This loneliness
exacerbated the sense of loss Tom experienced in not having contact with his family
because they disapproved of him being gay and HIV positive. The alienation Tom felt
was reinforced during his first interview, when he sang a song by Seymour Symons:
All of me, why not take all of me; can’t you see I’m nothing without you?
The song
reflected Tom’s experiences of rejection because he was gay and HIV positive.
Tom’s story begins with Tom, Kathleen and Lizzi introducing themselves before
exploring Tom’s premature ageing and admission to a nursing home. The story first
describes the effects of the nursing home on Tom’s quality of life and capacity to
express his sexual identity. Then it examines the provision of HIV supports by a gay-
friendly service, exploring how these supports allowed Tom to express his sexual
identity and stimulated some staff interest in Tom’s sexual identity.
Introducing Tom, Kathleen and Lizzi
Introducing Tom
My name is Tom, I’m 64 years old and I’ve been living in a nursing home for four
years. I am here because I’ve got HIV and I had a stroke. I’ve got two brothers, one
sister and my mother is 85 years old. I never knew my biological father, never knew
him. He just disappeared. So I stayed at a children’s home. It was a tough experience
to start off with. It was a religious institution; religion rammed down our throat.
Church twice a day; three times on Sunday and prayer in between. Then Mum met
John, our saviour. He gave us his name and got us out of the home, John did.
Although John was a good man, he wasn’t exactly a father.
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I first knew I was gay when I was eighteen years old. I didn’t choose to be gay; a
person didn’t come along and say, ‘Listen, do you want to be gay or straight?’ I had
no choice in the matter. I didn’t want to be gay. It just happened that some gene come
along and made me that way. You have to make the best with what you’ve got. That’s
it; we are what we are. You don’t always get what you want. Be nice if you could, but
very hard to come by.
When I realised I was gay I had to adjust to the fact that I could never have children
and that it would be a lonely life when I get older. No wife to love me; no children to
love me; no-one to look after me. It wasn’t what I wanted. I wanted to be like
everyone else. But I had that gene in me. I don’t know where it came from. You can’t
always get what you want. Because I am gay I’m looking towards a lonely life. It
would make a difference; if you love someone, if you meet someone and fall in love
with them. Oscar Wilde said: ‘One friend in a lifetime much; two many; three hardly
possible’.
In 1983 the doctor rang me at work to tell me I had HIV. I said, ‘I’m sorry to hear
that’. I kept it to myself. I didn’t tell anyone I had HIV. Eventually they put two and
two together and got four.
Introducing Kathleen
When I realised Tom was gay it was a bit of a shock. Not too much of a shock
because I knew he had a funny sort of a life, you know. Tom didn’t tell me he was
gay. I never knew exactly what was going on. Tom went to live in Melbourne and
when I visited him he was living with this
man
and it still didn’t dawn on me that he
was gay. I was as green as anything, I had no idea what gay was then. Then I realised
later on he must be gay. Well, he was stopping with this man. I thought it was queer
and I thought, ‘Oh well, perhaps it’s cheaper living in the same place and sharing the
rent’.
It wasn’t too much of a shock. I suppose I was partly expecting it. The thing is you
hear it said that they become like that, they become a gay person.
But
I don’t think he
became
a gay person. It was already here; it was born in him. It was there. He wasn’t
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like the others; he never played outside with the kids. He was always playing with his
soldiers on the table. He never mixed with children, with the others. He was quite
different to the others. I knew he was different in that way.
I suppose we all wish our children were normal, most people would wish that. But
you have got to expect the unexpected. It’s all lovely when they are children and then
they grow up. When I was little people used to say about some boys, ‘He’s a Nancy’.
We thought that meant they were being a sissy. We didn’t know about the other part,
that a man would have sex with a man. We were green in those days, absolutely
green. I must have been 40 before I found out what gay people really were. I knew
about Oscar Wilde being gay. They used to put jokes about being gay on the TV. I
heard about gay through the media and when HIV came around that opened our eyes.
There was all this gay bashing and then HIV, so you would have to be blind to think it
wasn’t going on. People are starting to accept being gay; I think that’s a good thing.
Introducing Lizzi
I first met Tom about eight years ago when I was working as a district nurse and he
was managing at home with quite intensive support. Last year I was appointed Tom’s
Community Support Officer. He has had so much adversity in his life and I wonder in
awe how he has survived and where he gets his strength to still go on. For Tom: his
childhood; the orphanage; identifying as a gay man; and being diagnosed with
HIV/AIDS at a time when most people died; that’s a lot in one life. I guess Tom lived
life to the full in those days as life was so short. I think he was a drinker and a smoker
and suffered with high cholesterol, which is also a side-effect of some anti-retroviral
treatments. I would think that all of these were contributing factors to him suffering a
stroke and needing nursing-home care at 61 years of age.
Stories of challenge and staff education
Premature ageing and nursing-home care
Tom
: Being in a nursing home makes me feel old. Being surrounded by people who
are so old here makes me feel old.
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Lizzi
: In the days when Tom was diagnosed, HIV/AIDS was a death sentence. Tom
was told that he only had months to live. At the time many of his friends were dying
of HIV/AIDS and since then Tom has experienced the death of a lot of friends who
were diagnosed in the 1980s before anti-retroviral therapy. He has experienced the
loss of his own health and had to face his own mortality. He has had loss of identity,
loss of income, loss of sexuality and loss of family. But the greatest loss was the loss
of his long-term partner. Along with this he has faced poverty, stigma, discrimination
and rejection.
When I first met Tom he looked to be a man in his seventies and I was surprised to
learn that he was only in his mid 50s. He says that he has had a good life and has lived
a good life. Now this was someone who was 57 at that stage. I said to him: ‘You’re
only young!” But for Tom he has lived his life.
Loneliness and isolation
Tom
: In the nursing home I’ve got no-one to talk to. The other residents here are all
asleep. They have their tea and go to bed, same old routine next day. Up the next day,
same process, breakfast in their room, come down and have lunch, sleepies in the
afternoon and then beddie-byes. They can’t help that. They’re not living, they’re just
existing. Lying there all day, poor devils. Just lying there asleep waiting for meals or
beddies and start all over next day, same old story, it doesn’t change. That’s their lot.
It’s my lot too.
I have no-one to talk to, really hard to adapt to it too. But I’ve realised this is my lot.
I’ve got no conversation; it’s depressing. I can’t converse with them. For a few years I
railed against it, and then I got depressed and succumbed to it. I realised I was
stumped and that this was my lot, I’m in a nursing home. I need to get out and have a
few beers or latte. I need to meet interesting people to make me feel alive for a while.
Then back to this deadness. What else is there? I can’t talk to them. I am a reasonably
intelligent man. It’s been depressing being in here, so I started antidepressants.
They’re called happy pills. I had to go on them when I came in here, it’s depressing.
Lucky I’ve got my own room though. I’m very lucky. I’m very lucky I’ve got me own
TV. It makes the time go.
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I have got no-one in my life now that loves me. Except the old girl, she loves me.
When mum goes I’m done. I’ve got brothers and sisters, but we don’t talk, because
I’m gay. Primarily that’s the reason, because I’m not married with children. If I was a
straight man I would be much more acceptable to them. Being gay to them is foreign;
we were bought up in a religious institution. It’s sad. I’m lonely because I don’t have
any contact with them.
Going out for lunch today made me feel alive again. Someone to talk to; someone I
can converse with. Oscar Wilde said, ‘City life, millions of people living lonesome
together’. Right, now let’s be positive.
Fractured family supports
Kathleen
: Tom used to come at Christmas time every year, and then all of a sudden
he stopped. He distanced himself away from the family. So it wasn’t really the
family’s fault entirely. He decided he didn’t want to have his family around because
of the way he was living, because of his lifestyle. Because people in that position,
being gay, know they are not doing the right thing, so he wiped us out. He was very,
very angry when he was young. I used to be scared of him; he used to frighten the life
out of me. One time when he was really angry my husband told him, ‘You better go;
you’ve upset your mother’. So he left and we didn’t see him for seven years. Well, we
didn’t worry too much about it because he knew where to come; he knew where we
were. He’d got his own life.
If he wanted us we were here.
If
he wanted us! If he didn’t want us, that’s it. So when
he got himself sick, then he wanted us. That happens, doesn’t it? When they get sick
they want the parents. I have a better relationship with Tom since he became sick. I
wasn’t frightened to go up there and stay with him. We kept in touch. Actually, funny
enough, I am more close to Tom than I am to any of the others. Since he has been sick
we can talk about things, we get conversation together. Queer, in’it? I have had a
better relationship with him since he became sick.
Lizzi
: I have spoken to one of Tom’s sisters and she said to me, ‘He’s been bloody
near death a few times and we all prepare for his death and he bloody well lives. How
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much longer can we take this?’ With HIV/AIDS, people can be at the palliative stage
and you would not think they would be there tomorrow, and then do this resurrection.
I think Tom’s sister may feel some resentment watching her elderly mother going to
Tom’s bedside, doing the vigils, sitting there with him and everyone is prepared for
his death and then he doesn’t die. This happens time and time again. Tom’s sister
drops Kathleen off at the nursing home but doesn’t go to visit him. Tom’s brother
doesn’t come to visit because he says his partner will leave him if she knows that he
has a brother with HIV/AIDS. He hasn’t told his partner that his brother has
HIV/AIDS.
Repression of sexual expression and identity
Tom
: I miss the intimacy of male company. I'm in a nursing home, it,s not my real
home, there’s no privacy and there are rules. I’m not able to live a gay man’s life in a
nursing home. I would prefer to be living in my own home with carers and with the
gay community at my fingertips. I see the gay magazines when I go out to pubs but I
couldn’t bring them back here.
I’ve had good times. I used to go to Steam-Works, the Peel Hotel and have oogie
boogies before I came into the nursing home. Now the libido has gone; it’s zilch. I’ve
been in the nursing home four years. That dampens your libido, of course. It wasn’t to
start with, then I adapted to the place, I realised there was nothing here. I had to forget
about any sexual relationship with a male, forget about sex generally. It can’t happen
now, its impossible. As far as sex is concerned, as far as relationships are concerned,
it’s impossible.
Lizzi
: How does a gay man in a nursing home like Tom who is still a sexual being
express his sexuality? He can’t. He can’t talk to the nursing home staff about that
because he is fearful that he might receive lesser care. A lot of people think that a man
having anal sex with another man is quite disgusting. Because the staff can’t talk
about his sexuality openly and comfortably, they are not meeting Tom’s needs and he
is living a shadow of a life. He will say to me, ‘I haven’t had sex for many years
now’. I say to him, ‘Well, is there any lead in the pencil?’ He says, ‘If the right man
came along there would be plenty of lead in the pencil’, and laughs. He is able to talk
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to me about his sexuality, especially touch and intimacy. He needs to express where
he’s at and what he needs.
Tom told me he likes to go out for coffee or a drive so that he can get away for a
while and feel normal again. He talks about the constraints of being openly gay in the
nursing home and that he is fearful of discrimination. When I reminded him that the
staff knew he was gay he said, ‘Yes, but you know Lizzi, I can’t tell the jokes I would
tell the other gay boys, and I have to be careful of how I act or commenting on cute
men, so my mind is constantly saying I can’t
say
those things’.
Tom often comments how much he misses the culture of gay people and his
community, and that it is really lovely having me come to visit him because he
doesn’t have to be guarded with me, as I understand and am part of the gay
community. I often wonder about the energy it takes him to maintain this persona of
being guarded about his sexual identity. What effect does that have on his health, not
being able to be who he is? That must shorten your life span: living and breathing an
existence that is so far from what he knows. He puts a lot of energy into making the
nursing home work for him.
Dependency, control and a good patient
Tom
: If I had a magic wand first of all I would walk all right, and if I had money I
would buy a little flat for myself. I would have some nice stuff around and live a
normal life with interesting people and sit back and have people visit me. Money
doesn’t necessarily bring happiness, but it gives you choices and independence.
Lizzi
: Tom always praises and hardly ever complains about his care. He always says
that he is very lucky to be looked after by lovely people. I think he is concerned that if
he doesn’t comply with the staff he may be discriminated against, so he has settled for
his lot. He feels that there is no hope for him of ever getting out of this institution and
that he has to make the best of that. Tom has learned to keep his mouth shut and not
make waves.
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The nursing home takes most of Tom’s pension. So there is little spending money for
him to go out to lunch. If he had more money he could go out more. He has to ask the
staff for cigarettes and feels that his independence has been taken away. The nursing
home dishes out his cigarettes, for God’s sake! It’s about control. It wasn’t Tom’s
idea; he has been told he is only allowed so many a day. He needs to be able to choose
whether or not he has a cigarette. Tom states that he feels compromised at times and
controlled, as he has to ask for money and cigarettes and doesn’t have any autonomy
with his finances.
‘My People’ – understanding gay culture
Tom
: When I came to the nursing home I told them I was married. Then they started
asking where the pictures were. If you’re married you have pictures of the wife and
children. I didn’t tell them at first I had HIV, but they were giving out my
medications. They worked out I was gay. I have had HIV for 24 years.
Lizzi
: Tom didn’t have a choice about telling the nursing home that he had
HIV/AIDS. He is on anti-retroviral medications, so any nurse giving those out would
know that he had HIV/AIDS. Tom has the double whammy of being a gay man and
HIV positive.
Tom has a great package of care for his HIV/AIDS. There is a HIV/AIDS consultancy
service that provided education for staff before Tom was admitted and continues to
provide ongoing education. The consultancy service has given the staff guidelines for
what to look for, what is reportable and given them phone numbers of who to ring
straight away and they visit the home every month to review his care. He has a
psychiatric liaison nurse goes in to see him and a general practitioner with expertise in
HIV/AIDS. He has respite in an infectious diseases unit for two weeks six times a
year, and my services. There is nowhere else that I could imagine that he would be
looked after as well as he is. And yet it still doesn’t meet his needs and he is quite
unhappy and tells me that he lives from meals to meals and sleeps in between. This
state of mind and lived existence is detrimental to his health and longevity.
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Stimulating staff understanding and empathy
Tom
: The respite is very good and the staff are very good about my HIV. They are
better at looking after someone with HIV than the staff here, they are more
professional. We need a gay nursing home. It’s about understanding, having someone
who understands. The staff in a gay facility would be more understanding.
Lizzi
: I think the staff are honestly trying to reach out to Tom, but they don’t
understand. I have spoken to some of the staff after he had a night out at a drag show.
They said it was great for Tom to be out and about with his own peers and what a
difference it had made to Tom’s well-being. Apparently he talked of nothing else for
days and was happy singing songs from the show. One nurse said that Tom had told
her that he couldn’t wait until he goes again. I asked her if she had ever been to a drag
show or a gay venue and she said, ‘No, but I would like to’. I asked her if she would
like to go with Tom next time and she said that she would love to. She also said that it
would benefit Tom if she understood more about his culture and community. I think
that this was a very positive step for her to take and to be able to identify that she
needed to learn more about Tom’s life.
How can you expect the majority of people who identify as heterosexual to
understand gay culture? The supports that Tom has have raised more of awareness
that people who are positive and are gay do have a community outside the nursing
home that are prepared to do something about his care.
ReMEMBERing and ‘My People’
Lizzi
: I noticed when Tom had his respite he met other clients that he had known for a
long time, who were also part of the gay community and his whole persona changed.
They would laugh, joke and come alive. One of the men, who was a fantastic drag
queen, would redo his routine. It was out of sync and sometimes you don’t know
whether to laugh or cry when you are watching him. But to me it was very moving,
because in his eyes I could see that he was back on that stage and Tom was there in
that bar watching him. It didn’t matter how out of kilter it was, the memories were
there for them both. They’d swap stories and talk about the drag queens and the clubs
and say, ‘Remember when?’ There was a lot of remembering. Similarly, people that
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have been victims of holocausts survived by forming groups and reMEMBERing their
lived experience, sharing stories and keeping their memories alive. I think that is
really powerful. They get together so they are re-members of a new group and they
are reMEMBERing their experiences. This is what I saw Tom and his group doing
during his respite. They were reMEMBERing and keeping their memories alive in
light of adversity.
Tom
: Lizzi says there are more gay men like me with HIV who are going to need
aged care. Can you tell them my story so that they get looked after well and don’t get
lonely like me?
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Story 2: ‘Don’t be too polite, girls, show a little fight’: The
story of lesbians providing palliative care at home
If older lesbians do not have the support we had and if they are not going
to speak up then they are going to lose a chance of having a wonderful life
in their last years. If you don’t talk up you die very lonely. If the worst
comes to the worst, well you are not a murderer, you are not a thief, just a
very great lesbian who loves women (Maureen, 74 years, lesbian).
Background to Thelma’s story
This is the story of a community of lesbians who negotiated a partnership with district
nursing and palliative care services to provide care for Thelma, a 67-year-old lesbian,
feminist and political activist who died at home in 2003. The provision of care in the
home is highlighted in the story and, while aged care is often thought to comprise
residential aged care (nursing homes and hostels) most aged-care services are
received at home.
Thelma’s story highlights the importance of seniors accessing services in their own
home, rather than relocating to a hostel or nursing home. Indeed, home-based
services, such as the Home and Community Care Program, were provided to over
142,000 senior Victorians in 2003–04 (Department of Human Services Victoria,
2008). This compares with the 37,445 seniors who required nursing home or hostel
care (Department of Human Services Victoria, 2004). Given the importance of home-
based services, this case study presented the opportunity to explore how these services
can meet the needs of GLBTI seniors.
Thelma’s story involved home services such as the district nurse and palliative care
services. While neither service is exclusively aged care, they represent some of the
services accessed by GLBTI seniors living at home.
Thelma’s story was told by Maureen, her partner of 19 years and Jean, a friend who
cared for Thelma as she died. Three phone interviews were conducted with Maureen
and two with Jean. Interviews with the district nurses and palliative care staff were
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not undertaken, as they could not be located. Maureen was passionate about sharing
Thelma’s story and sent a package of obituaries from newspapers and lesbian
publications with a note saying,
I am so happy you will know my Thelma.
The
obituaries described Thelma’s social, political and feminist activism including her
contributions as a founding member of organisations supporting women and lesbians
in particular. Some of her activism included participation in a 1980s ‘kiss-in’ protest
outside the Australia Hotel after two gay men were arrested for kissing in public.
Others involved challenges to the male-only rule in the front bars of hotels and a
successful campaign to enable women to get bank loans without a male guarantor.
In one interview Maureen sang one of Thelma’s favourite songs, written by Glen
Tomasetti to support the case for equal pay for women in the 1960s. The lyrics
include:
Don’t be too polite, girls, don’t be too polite, Show a little fight, girls, show a
little fight. Don’t be fearful of offending in case you get the sack. Just recognise your
value and we won’t look back.
The song was selected as the title for this story because
it represents the connection between Thelma’s passion for lesbian visibility and her
experience of home-based care services.
The story begins with Maureen and Jean introducing themselves and sharing their
experiences of support in the lesbian community. The women describe the disclosure
of their sexual identity to carers, their guidance on how to care for older lesbians and
the response that they received. The insights provided are enhanced by Maureen’s
reflections on the importance of being visible and Jean’s experiences as a lesbian
working in aged-care services. Given that so few GLBTI seniors disclose their sexual
identity in aged-care services, this story provides a unique opportunity to explore
disclosure and its consequences. The conclusion embodies the aims of the study, to
recognise GLBTI seniors, by sharing Maureen’s tribute to Thelma.
Introducing Maureen, Thelma and Jean
Maureen and Thelma
Maureen
: I am 74 years of age and I came here from South Africa when I was 39
years old. I missed my family; I had no family in Australia. You know who was my
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family? My friends the lesbians are my family. I have a few straight friends and I find
it very hard, because I wouldn’t say that the straight friends are my family. They are
on a different planet; they don’t feel what I feel.
I became a lesbian at the age of 18 years old and I told my mother and my father.
They didn’t understand, but my mother just took it in her stride. In those days people
didn’t shout from the roof tops that they were a lesbian. My partner Ally always
wanted to be in the closet. She didn’t like that word ‘lesbian’; she didn’t want to do
anything political or nothing, ‘no marches, no nothing’.
When Ally left me I did meet this wonderful woman, Thelma. Thelma was born in
1936 and we were together 19 years. Thelma kept things from her own family. Her
mother was Italian and Italians don’t look very kindly on being a lesbian. She went in
all the marches and once on International Women’s Day, she spoke on the steps of
Parliament House. On the 31st October 1969, Thelma and two women chained
themselves across the doors of the Arbitration Commission to protest about the
inadequate pay rates for women as well as all sexist discrimination faced by women in
society at that time.
Thelma was sick in August 2002 and she died in February 2003. She had cancer of
the kidney, then the liver.
Introducing Jean
Jean
: I have been a friend of Maureen and Thelma’s for the past ten years. I helped to
care for Thelma when she was dying. I wanted to provide Thelma with the best care
she could possibly receive. I am very conscious of the need for lesbians and gay men
to access good care because I work in health care, as the Director of Nursing in an
aged-care facility, and so I am aware that discrimination can occur. I am out at work
and sometimes I think there might be discrimination with the CEO because it is a
Christian organisation. I have cared for lesbians and gay men and they are very much
closeted. My last experience was with a gay man, he was very much out. Initially, the
nurses questioned HIV/AIDS and they wanted to know if they should get him tested.
It wasn’t a concern at all and I asked them what they were going on about. The staff
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were OK about it after education. I think a lot of it was ignorance, really. I wonder
whether a director of nursing who is not a lesbian would jump in at the deep end and
have all these tests done and have the staff start to wear gloves? I wonder!
I have nursed closeted older lesbians and I just sense that they are a lesbian. I talk to
them privately, tell them I am a lesbian and say, ‘You’re in safe hands’. If they have a
photo of their partner I will say, ‘That’s a nice photograph; is that someone who is
special to you?’ I don’t ask if they are a lesbian – no, no, no, not to someone who I
feel has been closeted. I feel my confidences are much appreciated, I can tell by their
facial expression. They feel that we share something, it’s a conversation that we have
together.
If I had the choice I would prefer to be cared for by lesbians, someone who could
understand me better as myself. If I go to a health professional I always say I would
rather have a woman and if it’s a lesbian even better. I feel sometimes if it’s a
heterosexual I need to hide something of myself, they might not understand. So,
because of my experiences in aged care and my own needs as a lesbian I understood
the importance of the care that Thelma received.
Stories of visibility and partnership
A chain of lesbian support
Maureen
: Lesbians do better than straight people with support because 99% of
lesbians love one another and are committed to one another. There is a whole chain of
lesbians and you don’t break the chain because when you need somebody it’s there. I
have people talking to me at 11 or 12 o’clock at night, just to talk. They got a few
problems, they’re alone, and I listen to them. They at least know that at the end of the
line there is someone who understands. They don’t want to talk to Life-line; they want
to talk to a
lesbian
. If I don’t help these people out, the chain is gonna be broken. We
need to stick together, there’s too few of us around.
The chain becomes more important as you get older. In your area there’s always a
lesbian, you know what I mean? There is always a lesbian for a little bit of a talk, a
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little bit of a smile, a little bit of a joke. That is part of the wonderful chain of lesbians
caring for and loving one another. That is more important as you get older, it is very,
very important. Very, very important. If I felt a bit sick now I could phone somebody
and I would get someone over here quick smart. I keep in touch. You gotta keep in
touch, you do get lonely you know.
The chain allowed Thelma to be cared for at home and also enabled me to survive
after her death. I got a lot of support. People phoning, people visiting and they still do.
If you don’t keep in touch you’ll be lost. We are all getting older and if you can you
need to make friends with the young dykes, because most young dykes are not ageist
and they can look after us when we need someone.
Jean
: I know that as a group we wanted to give Thelma the best death that she could
have had. We would do that with any of our friends, we would do that for each other.
We joke at times and say who is going to be there when we are dying? We are getting
older too, that’s the thing. We joke and say we need to befriend some of these
younger lesbians; easier said than done.
Trusted carers
Maureen
: When Thelma died we had women come in the last month, they were our
lesbian friends. These friends who looked after Thelma, they understood who she was
and also had a medical background. There was also Jean T. and Pat R. who came.
You have to mention their names, they did so much. They understood who Thelma
was and they understood me as well. We also had a lesbian cleaner who was very
considerate and careful when she wanted to clean around where Thelma was sitting. I
would take Thelma to the bedroom and then she would clean. This woman was very,
very caring and I don’t think we would have got this consideration from a straight
woman. She was more caring.
Jean
: Thelma and Maureen trusted us. That trust was very important to Thelma. We
were the ones who were asked to come and care for her. There was trust in the sense
that we were friends and we were lesbians. We had that knowledge or that healing and
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caring aspect to us that Thelma trusted, especially for intimate things like washing and
toileting that professional people do, that Thelma trusted to us to do for her.
It was extremely important to Thelma that we were feminist lesbians because she was
such an activist and a very strong lesbian. She was always out and in her dying
process she was out too. We did have the outside services, the district nurses and the
Palliative Care Service, but we were always present when they were there with
Thelma in the last weeks of her life.
A Process of love
Jean
: There were three of us who had nursing experience that provided 24-hour care
for Thelma for the last days of her life. We would be there in the morning to care for
her and then we would take it in turns to sleep in the room with her. It worked out
really well and we ourselves were good friends. It was so smooth. It was a process of
love. I am a nurse. The caring aspect you do professionally, but to be with a close
friend who is dying and a supportive community was different. At work I am around
people who are dying all the time and sometimes people die alone, whereas with
Thelma there was always a community present. There would always be one of us with
her. Sometimes we come together very well as a community when someone is dying.
Thelma was out there fighting for social justice and I believe if someone gives that to
the lesbian community you want to give back to them. I often thank Thelma for
inviting me to be there to care for her. It was such an honour, such an intense time and
such a time of love.
Healing for the lesbian community
Jean
: There were friends of Thelma and Maureen who didn’t have a nursing role but
provided us with care. Sometimes you could hear the giggling of the community in
the garden and we just knew that they were there. They would bring us scones or a
nice meal and they were there if we needed to talk to them. One friend had a beautiful
vegetable garden and she would make lovely pasta sauces for us. Another friend,
Sally, came from Tasmania and cooked for us and loved us all through food. Cuddles
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were provided for me, and a bed was made for me on the floor so I could give all my
energy to Thelma. That was really important because then I could give 24-hour care
to Thelma without being interrupted.
It was a healing time for us, because as lesbians and friends we ourselves were being
nurtured. It was an emotional time for us and it was a spiritual time because we were
caring for someone very close to us who was dying. That in itself is healing: healing
for you and healing for the lesbian community.
Speaking out
Maureen
: If older lesbians do not have the support we had, and if they are not going
to speak up, then they are going to lose a chance of having a wonderful life on their
last years. If you don’t talk up, you die very lonely. If Michael Kirby, the Chief
Justice of Australia, is out, surely you as an ordinary person can be out? OK! So you
might have got some flak but who cares? You have to talk up, ask for help. If the
worst comes to the worst, well you are not a murderer, you are not a thief, just a very
great lesbian who loves women.
Home-based support services
Maureen
: I got some help from a Palliative Care Service and the District Nursing
Service, and they were marvellous and they knew we were lesbians. The district nurse
had to come in every day, because she had to oversee things and if you needed them
you just buzzed them and they would come. The case manager from the Palliative
Care Service would come three or four times a week.
Disclosure and respect
Maureen
: Thelma was recognised as a lesbian by the services that came into the
house when she was sick. The district nurse and Palliative Care Service knew we
were lesbians and they respected it. I told them straight when they came. I said, ‘We
are lesbians and we would like to be recognised as a couple and we ask for your
respect and I don’t want any male nurses coming here to wash Thelma or whatever
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you people are going to do’. They agreed. The only time a male came was the doctor
from the Palliative Care Service and he also knew we were lesbians. He took me aside
and said, ‘Maureen you got to be very strong because unfortunately Thelma hasn’t got
very long’. He was caring.
They all knew we were lesbians. Thelma’s doctor knew, the lawyer knew, the funeral
people knew, everybody knew because we told them all. You’ve got to be honest. If I
ever go into an old age home I’ll be bloody telling them, love. What you see is what
you get. You go up to the matron or the CEO and say, ‘Well look, I am a lesbian. I
don’t want special treatment; I only want to be respected for my lifestyle and my
ideas’.
I had the case manager here and she was a wonderful young woman. She used to sit
out the back and have a yarn with us. She knew we were lesbians and she told me
afterwards that she knew immediately she came in, because there was this beautiful
way I looked at Thelma and way that Thelma looked at me. She knew but she said
that she appreciated me coming out to her. She would come and say, ‘Hi Thelma’, and
kiss Thelma on the top of the head. That was really nice. I think she liked the
atmosphere here.
Shared care
Jean
: The Palliative Care Service was there for advice and support. They were very
much in the background to let Thelma die the way she wanted to die with the people
around her that she wanted to have care for her. They were very supportive of us as a
community. We were very surprised. They said to us that they had never come across
this kind of support before. They kept saying, ‘This is amazing’. I felt very
comfortable with them if I had any questions to phone them and talk to them. They
were very happy to share her care. They didn’t take the back seat as such, but they
realised that we were the carers looking after Thelma and they were there to assist us.
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The rainbow fairy
Maureen
: On Christmas Day this one nurse from the Palliative Care Sservice came
along dressed as a fairy, which was amazing. She had all the rainbow colours; she was
an amazing young woman. It made a difference because, from the word go, she knew
we were lesbians.
Jean
: When Thelma died the Palliative Care Service was there within an hour and
they bought a counsellor along for us if we needed counselling. Later the case
manager asked was there anything else that they could have done for us as a
community. They used the word ‘community’ and 'your community’. The case
manager and other palliative care staff were all very accepting of us as a community.
I met the rainbow fairy three years after Thelma died and we had a lovely
conversation. The fairy was saying how she was amazed at the support provided by
the lesbian community and this was three years later! Even three years later the
lesbian community was still recognised!
The importance of home
Maureen
: Caring for Thelma at home was the greatest blessing for both of us. She
wanted to die at home and it was just an amazing series of events. Every day was a
new day for us. We were happy and I was happy that she could live and die at home.
She did not want to die in a hospital. In a hospital I would be running back and
forwards. When she died here and when she was sick here, I could see her nearly
every second of the day. I could look at her, I could smile at her and I could talk with
her. I could spend my time with her and I had all the help I needed. It was really
important to me. The whole episode of sickness, the caring and dying could only be
put in one word: inexplicable. The service we got from the authorities and from the
lesbians was just great.
Jean
: If Thelma needed to go into care I believe that she wouldn’t have been happy.
Thelma was very much sensitive to her environment and would not have been happy
anywhere but home. She was in her home and it was very much Thelma’s home and
she died in her chair. The chair was a recliner that the palliative service gave us. A
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hospice or aged-care service would just be a foreign environment and I don’t know if
as a lesbian community we would be welcome to the same extent, or whether we
would have felt relaxed. Many of us felt very much at home in Thelma’s house where
she had entertained us so well, fed us for years and supported us. It was very much a
lesbian household. Because it was her house her lesbian friends were very much
welcome. You look around the bookshelves in her sitting room where she was dying
and see a lot of feminist titles, lesbian artwork, beautiful lesbian portraits and her four
cats. She would not have been able to have her cats in a hospice. She loved her cats,
and her cat Matilda sat on her arm-rest while she was dying.
A tribute to the love of my life
Maureen
: When Thelma died I was so overcome. My friends washed her and dressed
her and she looked absolutely beautiful. She stayed with me for six hours after she
died and whatever people I could get hold of, they came to pay their last respects. I
started phoning people and they came along. She looked beautiful and then we
clapped her out of the house. Before the funeral people took her away I kissed her.
Thelma was my partner and she was quite a remarkable woman. She loved animals,
she loved wo men and she loved debating. She was a great woman and I was honoured
to have her in my life. I would like to have another 20 years with her but I can’t be
greedy, can I? Thelma was, is, and always will be the love of my life.
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Story 3: ‘She is who she says she is’: The story of a
transwoman living in a Catholic supported accommodation
service
People judge me because I’ve got a penis, I’m a transsexual. If I didn’t
have the penis, if I was a full female, then it would be a different story.
They wouldn’t know I was a transsexual then. One bludger says he’s
going to flatten me. He says it’s because of what I am, a transsexual. He
doesn’t understand it. He puts his fists up like he’s going to punch me. I
don’t get on with any of the buggers here. They’re not my kind of people
(Nancy, 79 years, transsexual).
Background to Nancy’s story
This is the story of a transsexual woman living in a Catholic supported
accommodation service. While numerous terms are used to describe transsexuals
(Couch et al., 2007), the terms used in this story will reflect those Nancy uses to refer
to herself. Nancy was born male and had partial gender-changing surgery when she
was 31 years old. Nancy moved into the supported accommodation service when she
was 64 years old. In Victoria, services such as this provide housing and support for
people with a range of disabilities, most of whom are older than 70 years of age
(Department of Human Services Victoria, 2003).
The opportunity to meet Nancy came through Maggie, a nurse who had been caring
for Nancy for 15 years. Nancy agreed to be interviewed but was preoccupied with
threats from a co-resident. Her room contained no personal affects. She claimed that
the two suitcases lined against her bedroom wall were packed, ready for her to move
to a place where she could be happier and free from harassment. Nancy’s story
provided insights into issues of discrimination and the authority and influence that
staff have in the provision of culturally appropriate care for residents.
The story presents four vignettes outlining episodes of discrimination and acts of
advocacy. The discrimination involved breaches of the principles of the
Health
Services Act 1988
which protects the basic human rights of people living in supported
accommodation services, nursing homes and hostels (Department of Human Services
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Victoria, 1988). In particular, the vignettes concern Section 10 of the Act, which
includes principles stating that:
• Residents should be treated with dignity and respect
• Residents are entitled to choose and pursue friendships and relationships with
members of either sex
• Residents should be provided with shelter in a home-like environment
• Services should be provided in a safe environment.
The case study also explores the power of organisational leadership in the celebration
of diversity. It finishes with Maggie’s reflections on her relationship with Nancy and
the importance of carers understanding that Nancy ‘is who she says she is’.
Introducing Nancy and Maggie
Nancy
: Me name is Nancy and I was born in 1928. I was born a boy and so me
parents called me Brian. Mum was all right, but Dad used to belt the shit out of me
and me brother; he was on the grog all the time. I worked as a female impersonator,
part of Les Girls [an all-male revue]. I met Carlotta, one of Les Girls in Kings Cross
in Sydney. I was known as Bridget then. It was good fun; I enjoyed meself. When I
got dressed up as a woman, guys would want to be with me. It was a lot of fun.
I was in the navy during the Second World War. Those were the days. When I came
out of the navy I worked with a horse trainer and I worked in the mines and I was a
boxer. I was in jail once for vagrancy, five years in Long Bay Jail breakin’ rocks. I
know how to look after meself. No-one else can do it as good as I can. There’s nothin’
I can’t do. I can do anything and I know it too.
In 1959, when I was 31, I had the operation [breast implants]. I wanted to have it
done. I don’t regret having it done. I don’t regret it. I couldn’t have the bottom done
[my penis inverted] because I was too old for that. Then I had me name changed, from
Brian to Nancy. Life changed when I had breasts. I felt I was what I wanted to be. I
don’t regret having it done, I’m happy. It would have been different if I’d had the
penis done, I could have had been pierced by a man. It would have been nice. I
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wouldn’t have been able to have any children, but I would have had sex with me
husband if I’d had that done. It was pretty important to have breasts. I could probably
go and have sex with another woman, but I wouldn’t. I’m not a heterosexual; I’m a
transsexual.
I wear a wig. I’ve got three wigs. Me hair has never grown, it’s long but very thin and
it’s me male hair. I still take female hormones. I have had to take them since I had the
operation. I have been on them for nearly 50 years. It’s the female tablet, I’ve got to
have it seeing as I’m not a pure male any more. I’m a trans, both, fifty-fifty. I’m
happy with what I am.
I got married when I left the navy and then me daughter was born. I haven’t heard
from me daughter for a while. I divorced me wife. I’ve been married twice, once to a
man and once to a woman. That’s enough for me. I don’t regret having the surgery
done. I don’t regret it. That’s how I got attached to me husband. I lived with him for
10 years. He was a lovely guy. He died 10 years ago. I still miss him. He was just spot
on.
I would like to meet someone else. But I don’t think I’m going to get tied up again,
bugger it! You would have to find a partner who was broad-minded. That’s a very
hard thing to find. You can’t always find a thing like that again. They’d have to be
broad-minded to understand me. Me having both organs, breasts and a penis, they
would have to be broad-minded to love me. That’s going to be very hard, I know that.
I won’t get no-one now. It’d be impossible.
Maggie
: When I first met Nancy in 1992 she was living in a special accommodation
service with Frank, but Nancy was Brian as well. She
was
Brian. We didn’t realise
that she didn’t have the complete sex-change operation. We had other gay couples in
the building and it was like walking into, ‘Oh! This-is-a-bit-different’. I hadn’t come
across gay men and transsexuals before. It was funny, because you’d walk past the
toilet and Nancy would be standing up urinating and you’d think, ‘What is she
doing?’, and then you’d go, ‘Oh, that’s right!’. When I found out that Nancy only had
the breast implants and the hormone treatment my heart went out to her. She has had
to live like that for so long, in purgatory basically, because she was not one and she
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was not the other. My heart just went out to Nancy. To me Nancy was Nancy. So if
you walked past the toilet and she forgot to shut the door you would sort of go, ‘Oh,
that’s right’. All the staff were like that, everyone accepted her as a woman. Both the
brother and her daughter refer to Nancy as ‘He’. Her brother gets embarrassed. That’s
why the staff are so great, we are all very protective of her.
Stories of discrimination and advocacy
Promoting dignity, respect and femininity
Maggie:
Nancy dressed very inappropriately when I first went to work in the special
accom. The staff there used to think it was funny when Nancy walked out in her
bikini with half her genitals falling out the bottom of her bikini pants. She would put
eye make-up on and had eyeliner up past her eyebrows. The staff wouldn’t sit down
and
show her
how to apply make-up without going overboard, without looking like a
painted doll with big red cheeks. They thought it was funny to watch her get around
like that. I didn’t like that. I fired the lot of them.
When I took over management of the service with a new team, we started to teach
Nancy how to actually tone it down: don’t wear a bikini outside; don’t wear tight
legging and midriff tops; if you’re going to be feminine, be feminine. We were
teaching her how to be feminine and she blossomed. We helped her out when she
went buying wigs. Her hair used to grow out from underneath the wig and we would
get Nancy in the bath and shampoo what hair she had left and trim it so it would fit
under the wig properly. We’d do her feet and her nails. We used to do Nancy’s wigs,
her nails and go op-shopping and buy her nice dresses. I bought her all these sarongs
and she put them on with a fur coat. It was like forty degrees. It took me a while to
click it was the tattoos; she didn’t want anyone to see her tattoos. So I went and got
her a nice little bolero long-sleeved cardigan, she was rapt.
Modelling recognition of the right to choose relationships
Maggie:
Frank was Nancy’s partner for 18 years and their families wouldn’t have a
bar of it. The staff and myself were very mindful that Nancy and Frank had a very
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boisterous sex life. We had to learn to knock on their door and then wait for
permission to enter the room. We walked into some pretty interesting situations.
Nothing was ever said, ‘Isn’t that unreal at her age?’ It really floored me! It shocked
quite a few of the staff. They were a couple in every sense of the word.
A lot of people didn’t agree with the way they lived, but Frank was sick and he didn’t
have long to go, so why interfere? Just leave them alone, make sure they are OK and
Nancy is happy. In 1997 Frank had to go to hospital; they told Nancy he might not
last. Next morning Nancy rang his sister and was told that she could not go to see him
because only family could visit. Well that was the wrong thing to say to me. I said to
Nancy, ‘You go upstairs, tidy yourself up, put a bit of lippy on and get your coat; I’m
going to take you to the hospital’. So I took her to the hospital and marched her in and
they said, ‘It’s family only.’ So I said, ‘This is his partner’. She stayed there for about
an hour, she was so happy. The charge nurse rang later that night to say he died. That
was so cold, because his sister wouldn’t even ring. I went downstairs and got a valium
and some water and came into Nancy’s bedroom. I said, ‘Have this Nancy, I’ve got
something to tell you’. Then I said, ‘He’s gone’. She started crying. And she lay down
on the bed and I just cuddled her, and we both cried until she fell asleep. The next day
we waited to hear from the family again and heard nothing. So I rang the sister about
the funeral and she said, ‘I’ll get back to you about that’. Three or four days went past
and I was thinking, ‘We should have heard by now’. So I rang them. They had buried
him two days earlier. How could they do that? I didn’t know how to tell Nancy.
I was at home the day after Frank died and one of my staff rang me. Frank’s nephew
had just arrived and was taking everything out of Frank and Nancy’s bedroom. They
were trying to take the rings off Nancy’s fingers. I reckon I must have broken all the
speed rules to drive there. I went flying up the stairs and into the bedroom and I said:
‘Who are you and what are you doing?’ He said that he was collecting Frank’s
belongings. But Frank had nothing. I said to him, ‘Get out of here before I ring the
police; how
dare
you! She hasn’t even had time to mourn and you’re trying to wipe
out every memory she’s got. Get out of the building before I call the police’. So he
left and the police came. He called them. How we got through that I’ll never know.
The family wouldn’t tell us where Fr ank’s grave was. It took us about a year to track
that down so that Nancy could visit his grave.
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Responding to transphobic abuse and providing a homelike environment
Nancy:
The other bludgers that live here give me a hard time. Discrimination against
transsexuals is everywhere. Everywhere is the same; you can’t get away from it. I
don’t like it here, too many bludgers. That’s why I keep away from the buggers.
That’s why I mention about me leaving here and going to live in Adelaide. There are
certain ones in here I don’t get on well with. People judge me because I’ve got a
penis, I’m a transsexual. If I didn’t have the penis, if I was a full female, then it would
be a different story. They wouldn’t know I was a transsexual then. I don’t want to
fuckin’ eat. Can’t you see I’m trying to die? Me life’s too fuckin hard. I’m sick of it.
I only leave me room if I feel like a meal. Other than that I stay here. That’s me life. I
don’t associate with anyone. They’re not my kind of people, they’re not sociable
people. I don’t go anywhere near them, only at mealtimes. They don’t interest me. I
am up here all the time, away from everyone else, bugger them!
One bludger says he’s going to flatten me. He says it’s because of what I am, a
transsexual. He doesn’t understand it. That’s why I am anxious to go and leave here.
Had I been a normal sex it would have been a different story then. He puts his fists up
like he’s going to punch me. He’s only a little bastard. That’s one reason I want to get
away from this place. I’m scared, that’s why I stay in my room. I don’t get lonely;
I’ve got me television. It’s been that long now on me own it doesn’t worry me. I
haven’t seen him for a while, but if I did he would have another go at me again.
That’s why I want to get away from here. That’s why I have got me cases packed. I
would be better off away from here. He’s the only one that’s had a go at me, but I
keep away from everyone.
Maggie:
We’ve got rules about harassment and threatening behaviour that the
residents have to stick by. If a resident breaks the rules, we ‘breach’ them by putting
in a formal complaint which goes to community housing. If they get three breaches it
goes to a tribunal hearing to determine whether they can continue to live in the
building. I have breached the resident that has been harassing Nancy and if we see it
happening the staff intervene.
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Not all the residents here know Nancy is a transsexual. I think that some of them just
think she is a very strange-looking lady. Some of the guys treat her with a lot of
respect. It’s hard for a lot of people to live together like this, so you are going to have
your arguments and fights. Sometimes it gets very loud. When an argument starts,
Nancy resorts back to being Brian. She puts her fists up and starts swearing. One of
the residents said, ‘It’s not a lady, it’s a man, and if she punches me I’ll punch him
back’. So they don’t look at her as a female, they look at her as a man. There was an
incident about a week ago in the dining-room when Nancy was arguing with another
resident who was drunk and she picked a chair up and threw it at him.
Recognising vulnerability and providing a safe environment
Maggie:
Nancy would like another boyfriend. She had a boyfriend here at one stage
and he was just after her money. She was going to go and live with him. She wants so
much to be liked. I told her to go and live with him for the weekend, so that if
anything happened she could come back. But she packed her bags and she moved in
with him. Came to pension day he took her pension and kicked her out. She so wants
to be loved. She so wants to be somebody’s partner.
The staff are so great, we are all very protective of her. Nancy would talk to anybody;
she would just talk to anyone and everybody. She is very vulnerable, especially now
[that her cognitive function has declined]. About a month ago Nancy was outside the
building talking to the people who sit there and smoke. There was a guy there, a
schizophrenic who lives in the tram stop, who had been hanging around for a couple
of days. When Nancy came inside he followed her up to her room and then started
touching her and masturbating. Nancy left the room and when she returned to her
room he was gone. I took her to a sexual assault counsellor.
Nancy told me she had let this man into the building because he was talking to her.
That’s the thing about Nancy. He talked to her, and she is lonely and wants company,
and because he talked to her she trusted him. I called the police and they asked me
whether I thought she was making it up or fantasising. I showed them the video tapes
from the surveillance cameras of him following her into her room. She is so lonely
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she will talk to anyone. I think that’s why they want to send her to a hostel, so she will
be safer.
I wonder at times if maybe Nancy and I have got that bit of an affinity because, from
day one, I have never questioned her gender identity. I wonder if that stays in her
head. The staff here were told from day one about who Nancy is and they treat her
like any other resident. We treat everyone equally regardless of their sexuality or
gender identity. We are familiar faces, we are her family. I try to teach my staff that
what you see is what she is. Don’t think that’s Brian; that’s Nancy. That’s Nancy
through and through and to you she is a woman. If you get that through to them
there’s no dramas after that.
She is a woman
. That’s how I have always treated her.
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Implications for aged-care services
This report has presented the experiences of 19 GLBTI seniors receiving aged-care
services in Victoria. While the findings cannot necessarily be generalised to the larger
population, they provide evidence of the challenges facing some GLBTI seniors
accessing aged-care services. This report stimulates debate regarding the disparities
experienced by GLBTI seniors and the need to develop GLBTI-friendly aged-care
services. In this last section of the report the implications of the research findings for
aged-care services will be explored. To provide a context for these implications, it is
useful to reiterate the eight core issues identified as relating to the experiences and
special needs of GLBTI seniors.
Core issues in relation to GLBTI seniors
1. The impact of historical experiences of discrimination
The current generation of GLBTI seniors were coming of age at a time when their
sexual/gender identity could result in enforced medical ‘cures’, imprisonment or loss
of family, employment and friends. Consequently, they have special needs which
need to be understood by aged-care service-providers. In particular, some GLBTI
seniors:
1.1.Have never experienced a time when they have felt safe disclosing their
sexual/gender identity
1.2.Revisit past discriminatory experiences when encountering discrimination and
consequently feel upset, anxious and depressed
1.3.Have learned that they need to be assertive to prevent discrimination
1.4.Often have a network of ‘chosen’ family or friends rather than genetic family
ties, while some may have few social connections.
2. Invisibility as an impact of current discrimination
Some GLBTI seniors closet their sexual/gender identity in aged-care services
because:
2.1.They are aware that discrimination occurs as they have:
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2.1.1. Experienced discrimination in aged-care services
2.1.2. Heard reports about discrimination in these and related services
2.1.3. Witnessed discriminatory responses from aged-care service-providers
to GLBTI people profiled in the media
2.2.They fear a diminished standard of care or deterioration in their relationships
with their carers
2.3.They fear the resignation of valued home carers
2.4.They believe that aged-care service-providers do not expect them to be sexual
or GLBTI
2.5.They believe that many aged-care service-providers do not understand what
GLBTI or GBLTI culture means and therefore how to meet the needs of
GLBTI seniors.
3. The impact of identity concealment
GLBTI seniors who feel unable to disclose their sexual/gender identity may:
3.1.Feel unable to be themselves and feel devalued or depressed.
3.2.Experience stress and pressure from maintaining a façade of heterosexuality
3.3.Have unmet care needs
3.4.Have limited opportunities for sexual expression.
4. The impact of inadvertent visibility
Some GLBTI seniors are exposed to discrimination from staff, co-clients and visitors
because they are unable to hide their sexual/gender identity. These seniors, who
require protection in aged-care services, may include:
4.1.Transsexuals who do not pass as a man or a woman
4.2.Cross-dressers who do not have the opportunity to cross dress in privacy
4.3.Those who have a demonstrative relationship with their same-sex partner
4.4.Men who are HIV positive and are therefore expected to be gay
4.5.Seniors with dementia who have lost their capacity to assess when and where
it is safe to disclose their sexual/gender identity.
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5. The impact of dementia
Some GLBTI seniors have dementia and need:
5.1.Staff to understand that the grief and loss involved in having a same-sex
partner with dementia is no less than that experienced by a heterosexual
couple
5.2.To have their relationships recognised by aged-care service-providers, other
clients and families
5.3.To be protected from discrimination by co-clients with dementia
5.4.To be supported to provide informed consent relating to sexual expression
5.5.To be cued around gender/sexual identity if required.
6. Enabling sexual and cultural expression
Sexual and cultural expression is important for the mental health of GLBTI seniors
and may involve:
6.1.Physical touch such as holding hands, hugging, kissing
6.2.Contact with partners and private time together
6.3.Making connections with the GLBTI community including being with other
GLBTI people, reading GLBTI community magazines, watching GLBTI
television programs, attending special festivals/meetings and events.
6.4.Dressing in clothing that expresses their sexuality/gender
6.5.Sexual intercourse, masturbation, sex toys and sexually explicit material such
as magazines, DVDs and books.
7. Inadequate standards of care
Some aged-care services discriminate against GLBTI seniors by failing to create
GLBTI-friendly services, including:
7.1.Staff being unaware of their legal responsibilities regarding discrimination
7.2.Staff not being held to account if discrimination occurs
7.3.A lack of staff guidance in the form of organisational policies, education and
leadership around the care of GLBT seniors
7.4.The provision of a diminished standard of care to GLBTI seniors
7.5.Staff failing to protect GLBTI seniors from discrimination by co-clients and
visitors in shared services
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7.6.Restricting opportunities for sexual expression
7.7.Allowing the values and beliefs of aged-care service-providers to govern the
care delivered to GLBTI seniors
7.8.Withdrawing physical contact from gay men in the belief that HIV/AIDS will
be contracted.
8. Achieving a safe environment
A positive response to the disclosure of sexual/gender identity can result in GLBTI
seniors feeling understood, valued and safe. A positive response can be achieved by
aged-care services:
8.1.Creating GLBTI-friendly aged-care services
8.2.Affirming the legitimacy of GLBTI seniors’ sexual/gender identity
8.3.Creating opportunities for dialogue with GLBTI seniors around their care
needs
8.4.Understanding the importance of sexual expression and providing GBLTI
seniors with opportunities for sexual expression to occur
8.5.Valuing the intimate relationships and friendships of GLBTI seniors.
These issues reflect the experiences of the 19 GLBTI seniors interviewed for this
study. The interviewees also provided a number of suggestions for the development of
aged-care services to ensure that consumers are safe from discrimination and that their
needs are met.
Moving forward
This study clarified that some GLBTI seniors are exposed to discrimination in aged-
care services. The study also identified strategies to address this issue. Firstly,
participants expressed their support for GLBTI-specific aged-care services. Secondly,
the need for education related to the needs of GLBTI seniors was also identified. An
exploration of these strategies follows.
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GLBTI-specific aged-care services
Most participants were supportive of GLBTI-specific residential aged care because of
the importance of being with ‘My People’. This was articulated by Steven, a 71-year-
old gay man who reflected on the care received by his partner Bill in a nursing home.
Steven reported that for a gay man, being admitted to a nursing home was landing:
smack bang into the middle of heterosexuality.
While he was able to support Bill, he
reflected that as he aged:
There is no-one there to protect me as I could with Bill. There must be
hundreds or thousands of guys around Australia who are in a similar
situation or getting to that. They have got no-one if they go to a nursing
home. They probably want to sit there and just pass away as soon as
possible, because they can’t be themselves because they are in a straight
nursing home. Imagine a lesbian who’s been in a loving relationship with
a partner and suddenly thrust into the blue-rinse set. It’s not her scene
whatsoever. It would be so frightening. What is there for them? There’s
nothing. Just to sit there in this nursing home and be part of a culture that
they really never wanted to be a part of. They get their meals; they get a
shower or there might be a bus that takes them out once a week. But there
is nothing there in conversation that would be interesting to them. They
could discuss things on telly, but it’s not like being with one of your own
group. You would have to be very guarded and that puts a strain on a
person. ‘Why didn’t you ever marry?’ ‘Haven’t you got grandchildren?’
The old questions. You are in a group of people who have still not grown
up with the outing of gay and lesbians. People who want to know ‘why’?
It could be very, very difficult (Steven, for Bill, 71 years, gay).
The support for GBLTI specific services was also articulated by Anne, a 77-year-old
lesbian who was receiving home services. Anne expressed concerns about the
possibility of being separated from her partner and noted:
I have been meeting lately, a lot of older lesbians who have been saying:
‘I am the only child, I have no children. Eventually, when I want care and
I am willing to pay for it, like sell my house … is there anything going
like that old dykes’ home?’... The facility would allow partners to stay
together. Very few hostel-type accommodations would accept a pair of
old dykes because there would be uproar from the residents; there is
enough uproar having married couples living together. There is a Lodge in
the city with double rooms. Lesbian couples wouldn’t be accepted; it’s
very upmarket, a square broadminded place. If lesbians wanted to go into
an aged-care facility as a couple you would be very lucky to find one that
would accept you as such. You would even be lucky to find one that
would give you adjoining rooms. Although it is illegal to discriminate,
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there is always a way out. If we wanted to go into hostel accommodation
as a couple, I think we would find it almost impossible. The idea of the
old dykes’ home is great (Anne, 77 years, lesbian).
Anne’s need to have her relationship recognised by aged-care service-providers and
co-client was shared by others. Joseph, a 61-year-old queer man receiving home
services, described the need for services in which he would not be discriminated
against because of his sexuality:
If you can go to a place where you’re not in the least bit embarrassed
about your sexuality or your sexuality, preferences or activities then the
rest is a doddle. You’re not likely to become the subject of discussion if
you’re interested in model railways. But your sexuality, particularly
homosexuality, defines how a lot of people respond to you (Joseph, 61
years, queer).
The fear that his sexuality would define how his carers responded to him prevented
Joseph from disclosing his sexual identity. The wisdom of this decision was
consolidated for Joseph in the homophobic remarks made by his carer in response to
gay men profiled in the media. The solution preferred by Joseph was GLBTI-specific
facilities which valued sexual/gender diversity. Joseph suggested that:
If you’re in a gay and lesbian aged-care facility and they had doctors and
people coming in, they would know they are going to this sort of place.
They can’t say they were confronted because this old chap wanted to talk
about anal activity. You’d say: ‘Well look pal, what did you expect?’ So
you’re going to get people that are coming in there that you can
reasonably assume know what to expect. If it offends them personally and
professionally, then they would be smart enough not to offer their services
(Joseph, 61 years, queer).
Like Joseph, many participants repor ted diminished opportunities for sexual
expression in care. There appeared to be a correlation between dependence on service
and opportunities for sexual expression; with those who were more dependent and had
less privacy and fewer opportunities for sexual expression. The importance of sexual
expression being supported by staff, and being made safe, was explored by Joseph:
I think it’s a good thing to continue on in sexual activity as long as you
can. I want to do that in a place where there is no odium attached to it.
People understand. You’re not just another dirty old poof. If you wanted
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to hire someone to come in and have sexual activity with you, you’re in a
place where it’s relatively safe. You’re not just another vulnerable old
poof out there in the suburbs at the mercy of some bloody homicidal
young bloke who’s decided he’s going to kill you and rob you (Joseph, 61
years, queer).
These comments highlight the fear felt by many participants that generated support
for GBLTI-specific aged-care services. On the other hand, most participants also
described the importance of staff education to prevent discrimination and ensure that
staff understood their needs. In the next section the suggestions for the education of
staff are described.
Education
The need for the education of aged-care service-providers was explicitly described by
some participants. That such education is imperative was also implied in the issues
presented. Perhaps the most pressing need for education relates to the legal
responsibilities of aged-care service-providers in relation to discrimination. As cited
previously, the Victorian Equal Opportunity & Human Rights Commission (2006)
identifies that the human rights of all Australians, including GLBTI seniors receiving
aged-care services, are recognised. In particular, under the
Charter of Human Rights
and Responsibilities
(2006), the
Equal Opportunity Act
(1995) and the
Statute Law
Amendment (Relationships) Act
(2001) clarify the right to equality.
It may be important to ensure that aged-care service-providers are aware of their
responsibilities under this legislation. Furthermore, it is necessary to further explore
how such legislation intersects with legislation governing aged-care services. Other
opportunities for the education of aged-care service-providers are highlighted in this
report. In particular the phenomenon of ‘My People’ and the associated service
characteristics that enabled participants to feel valued and cared for are explored next.
‘My People’
Most participants referred explicitly to the importance of ‘My People’. This referred
to family, friends and aged-care service-providers with whom they could be
themselves. Analysis of the conversations around ‘My People’ highlighted five key
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characteristics that can be applied to aged-care service-providers for the development
of GLBTI-friendly aged-care services. These characteristics were understanding,
empathy, trust, advocacy and leadership.
Understanding and empathy
The importance of understanding and empathy were highlighted when valued service-
providers respond with understanding to the needs of GLBTI seniors. Some
participants thought that GLBTI service-providers were better able to understand their
needs and have empathy. Empathy was seen as an act of understanding, and it was
noted that some aged-care service-providers did not empathise, as they did not
understand what it meant to be GLBTI. Participants indicated that aged-care service-
providers needed to understand the needs of GLBTI seniors before they could feel
safe to disclose their sexual/gender identity. Some of the particular issues which arose
related to the need for staff to understand the following:
1. The fact that seniors are sexual
2. The fact that some seniors are GLBTI
3. What cultural and sexual expression means to GLBTI seniors, what it
encompasses and how opportunities for sexual expression can be provided
4. The historical experiences of the current generation of GLBTI seniors and
the implications for their aged care
5. Strategies to develop GLBTI-friendly aged-care services
6. Positive responses to disclosure of sexual/gender identity by GLBTI
seniors
7. Negative consequences for GLBTI seniors who feel that they have to re-
enter a closet when they receive aged-care services
8. The impact of staff values and beliefs on the care that they deliver
9. The potential vulnerability of GLBTI seniors who are unable to conceal
their identity
10. Their responsibility to protect GLBTI seniors from discrimination
11. Universal infection-control guidelines, and how the fear of HIV/AIDS
relates to the care of gay men
12. The special needs of GLBTI seniors with dementia.
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These understandings could be conveyed to aged-care service-providers through
access to the stories presented in this report. These stories could also assist in
generating understanding and empathy and enable GLBTI seniors to feel that they can
trust their carers.
Trust
Several participants described the importance of trust in their relationships with
family, friends and aged-care service-providers. This is not surprising given the
historical experiences of discrimination upon disclosure. To foster trust in their
relationships with aged-care service-providers, some participants described allowing
carers to know them as a person before disclosing their sexual identity. Most
participants felt that they needed to trust their carers, particularly if they were
dependent on the aged-care service provided.
A sense of mistrust and fear was apparent in many stories and participants identified
the need for aged-care service-providers to understand and have empathy with GLBTI
seniors before being considered trustworthy.
Advocacy
The majority of participants who reported positive experiences of aged-care services
had an advocate. In some cases the advocate was a family member or friend and in
other cases it was an aged-care service-provider. Advocates were generally people
who understood GLBTI seniors, had empathy, were trusted and played a pivotal role
in crisis management around incidents of discrimination.
Leadership
The need for strong leadership in policy and practice was also identified. Leadership
is based on the knowledge of existing legislation which prohibits discrimination on
the grounds of sexual/gender identity. However, the practical implementation of such
legislative requirements has sometimes fallen short in some aged-care services. In
some services, the development of organisational policies to support diversity was
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apparent through the employment of GLBTI staff and an investment in staff education
in diversity.
To create GLBTI-friendly aged-care services, the stories from GLBTI seniors in this
study could be used as a basis for service review and policy development. It could
also be valuable for staff to determine strategies for creating GLBTI-friendly aged-
care services.
While responses to this report seek to address the needs of GLBTI seniors in aged-
care services, discrimination will continue to occur. Interim strategies to provide
advocacy for GLBTI seniors and support for aged-care service-providers need to be
considered as a process of developmental change in the sector.
Partnerships with aged-care services
The general community is often unaware that seniors are sexual and the some seniors
are GLBTI. Therefore, it is not surprising that aged-care service-providers hold the
same beliefs. Furthermore, few aged-care service-providers have been provided with
education about the issue of sexual expression and ageing. However, given the
reliance of seniors on aged-care services, service-providers need to understand the
importance of sexual expression and GLBTI identities.
Aged-care services will increasingly find themselves caring for GLBTI seniors. The
opportunity now exists to work with aged-care services to create GLBTI-friendly
services. To achieve this important goal it is necessary and important to engage
service-providers and other stakeholders in the process. By exploring their
experiences and seeking feedback on this report, the determination of strategies for
creating GLBTI-friendly aged-care services can only be enhanced.
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Attachment 1: Advertising
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Attachment 2: Participant Information & Consent
Version 2
: Dated 10th May, 2007
Full Project Title:
Exploring the Experiences of Non-Heterosexuals in Aged Care.
Project Researcher
: Catherine Barrett
This Participant Information and Consent Form is six pages long. Please make sure
you have all the pages.
1. Your Consent
This Participant Information and Consent Form contains detailed information about
the research project. Its purpose is to explain to you as openly and clearly as possible
all the procedures involved in the Project before you decide whether or not to take
part in it.
Please read this Participant Information carefully. Feel free to ask questions about
any information in the document. You may wish to discuss the Project with a relative
or friend.
Once you understand what the Project is about and if you agree to take part in it, you
will be asked to sign the Consent Form. By signing the Consent Form, you indicate
that you understand the information and that you give your consent to participate in
the research project.
You will be given a copy of the Participant Information and Consent Form to keep as
a record.
2. Purpose and Background
The Project is being undertaken by Matrix Guild Victoria and the Vintage Men.
Matrix Guild
: Provides services for lesbians over 40 years of age and is
committed to the support of appropriate care, accommodation choices and
alternative lifestyle options. Matrix Guild also provides information and
training for government, service-providers, consumers and the general public.
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Vintage Men:
Is a social and support group for mature gay and bisexual men
and their friends.
The aim of the Project is to identify the needs of older non-heterosexual people. This
will enable challenges to policy and legislative officers at all levels of government
where unmet needs exist.
To identify these needs, the Project Researcher will interview 20 individuals about
their experiences of aged care. These interviews will explore positive stories of aged
care, as well as stories of negative experiences, which may include discrimination. To
understand these experiences in more detail, a number of participants will be invited
to take part in more in-depth interviews and may or may not choose to nominate two
‘significant others’, such as a partner or an aged-care service-provider, to be
interviewed. Nomination of such significant others is entirely the choice of
participants, who may opt not to do so but still wish to be interviewed.
The Project is being monitored by a steering committee with representation from a
number of community groups which support the gay, lesbian, bisexual, transgender
and intersex community. The Steering Committee will support the Project and any
changes which are initiated in response to the Project. The Committee includes
representation from the following organisations:
Matrix Guild Victoria Inc. Vintage Men Inc.
The Carlton Clinic The Brotherhood of St Laurence
Victorian Gay and Lesbian Rights Lobby Gay and Lesbian Health Victoria
The Also Foundation Women’s Health East
Women’s Social Health Advocate Women’s Health West
Australian Lesbian Medical Association
School of Health Sciences, The University of South Australia
The Project has also received in-kind support from the Victorian Council on the
Ageing; Equal Opportunities Commission Victoria and Women’s Health Victoria. In
addition, funding has been received from the Reichstein Foundation.
3. Procedures
After you have spoken to the Project Researcher on the phone, you will be sent this
information form, inviting you to participate in an interview. The interview will take
between 30 and 60 minutes and can be conducted over the phone or in person. In the
interview you will be invited to describe your experiences of aged care. You will also
be asked how the aged care you have received has affected you and your
relationships.
To understand the experiences of participants further, a small number of interviewees
will be invited to nominate other people, with an influence on their experience of aged
care, to be interviewed. For example, this may include a partner or aged-care staff. In
an interview, the Project Researcher will invite this person to describe his or her
experiences of aged care for non-heterosexuals. The Project Researcher will discuss
with you whether your identity needs to be protected from this person and, if so, how
this can occur.
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All the interviews will be taped and later transcribed for analysis. You will be invited
to review a copy of the notes taken from your interview and make any necessary
changes before it is included in the project report.
4. Possible Benefits
Your participation in the interviews is not expected to benefit you directly. However,
your participation may help to positively change the type of aged-care services
provided in the future, and the manner in which aged-care services are provided.
5. Possible Risks
The possible risks from participation in the Project are minimal. The Researcher will
discuss with you what strategies will assist in protecting your identity. You will also
be invited to check information before it goes into the Project report to de-identify any
aspects of your story.
If you nominate ‘significant others’ to participate in interviews, the Researcher will
invite you to clarify whether your identity needs to be protected and, if so, how this
can be achieved. Strategies to protect your identity will include de-identification of
your story as it appears in the project report, before it is available to these ‘significant
others’.
6. Alternatives to Participation
You do not have to participate in an interview to receive the care you require. If you
do not wish to take part you are not obliged to.
7. Privacy, Confidentiality and Disclosure of Information
Any information obtained in connection with this Project and that can identify you
will remain confidential. It will only be disclosed with your permission, except as
required by law
.
We will maximise confidentiality and protection of privacy during reporting. In any
publication relating to the Project, information will be provided in a way to prevent
you from being identified.
Only Project staff will have access to the information collected from your interview.
In accordance with Australian Privacy laws you have the right to access the
information collected and stored by the Project Researcher about you. You also have
the right to request that any information with which you disagree may be corrected.
Please contact the Researcher if you would like to access your information.
Records of interviews will be stored securely in a locked filing cabinet. This data will
not identify you. Following completion of the study, research records will be stored
securely and retained for a period of five years after publication in Gay and Lesbian
Health Victoria archives and then destroyed.
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8. Results of the Project
Results of the Project will be presented back to the Project Steering Committee. If
you would like a copy of the summary of the results of the Project, please notify the
Project Researcher.
9. Further Information or Any Problems
If you require further information or if you have any problems concerning this Project
you can contact: The Project Researcher, Catherine Barrett, on 0448 011 394
10. Other Issues
If you have any complaints about any aspect of the Project, the way it is being
conducted or any questions about your rights as a participant, then you may contact
Jane Kent, Community Development Worker, Matrix Guild on 0438 411 441.
11. Participation is Voluntary
Participation in any research project is voluntary. If you do not wish to take part you
are not obliged to. If you decide to take part and later change your mind, you are free
to withdraw from the Project at any stage.
Before you make your decision, the Researcher will be available to answer any
questions you have about the Project. You can ask for any information you want.
Please sign the Consent Form only after you have had a chance to ask your questions
and have received satisfactory answers.
If you decide to withdraw your participation after you have signed the consent form,
please notify the Researcher before you withdraw. This notice will allow the
Researcher to provide you with a
Revocation of Consent Form
.
12. Ethical Guidelines
This Project will be carried out according to the
National Statement on Ethical
Conduct in Research Involving Humans
(June 1999) produced by the National Health
and Medical Research Council of Australia. This statement has been developed to
protect the interests of people who agree to participate in human research studies.
The ethical guidelines for this Project are monitored by the Project Steering
Committee.
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Participant Interview Consent Form – Aged-Care Recipient
Version 2
: Dated 10th May, 2007
Full Project Title
: Exploring the Experiences of Non-Heterosexuals in Aged Care
I have read and I understand the Participant Information, Version 2, 10
May 2007.
th
I freely agree to participate in this Project according to the conditions in the
Participant Information.
I will be given a copy of the Participant Information and Consent Form to keep
The Researcher has agreed not to reveal my identity and personal details if
information about this Project is published or presented in any public form.
Participant’s Name (printed) ……………………………………………………
Signature Date
Researcher’s Name (printed) ……………………………………………………
Signature Date
Note:
All parties signing the Consent Form must date their own signature.
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Participant Interview: Revocation of Consent Form – Aged-Care
Recipient
Full Project Title
: Exploring the Experiences of Non-Heterosexuals in Aged Care
I hereby wish to WITHDRAW my consent to participate in the Project described
above and understand that such withdrawal WILL NOT jeopardise my care or my
relationship with my carers.
Participant’s Name (printed) …………………………………………………….
Signature Date
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Resources
Seniors Rights Victoria
(1300 368 821):
A free service that has been established to
help prevent elder abuse and safeguard the rights, dignity and independence of older
Victorians. The service provides telephone information and referral, advocacy and
support, legal services, community and professional education.
Aged Care Complaints Investigation Scheme
(1800 550 552):
Available to anyone
who wishes to provide infor mation or make a complaint about an Australian
Government-subsidised aged-care service, including nursing homes, hostels,
community aged-care packages and extended aged care at home.
National Aged Care Advocacy Line
(1800 700 600):
A national program promoting
the rights of older people receiving Australian Government-funded aged-care services
to the community. The advocacy line can provide advice about rights; assist seniors to
exercise their rights and work with the aged-care industry to encourage policies and
practices which protect consumers.
Alzheimer’s Australia Hotline (1800 100 500):
The peak body providing support
and advocacy for the Australians living with dementia.
Gay and Lesbian Health Victoria
: A website and clearinghouse that provides news
and information of particular interest to the health and well-being of GLBTI people in
Victoria.
Inter Section Melbourne (9471 4878):
An activist group with a web-based
presence which takes action in relation to GLT ageing including advocating policy
change. It also acts towards the development of programs to make local governments
aware of the issues in their communities, including the issues for older gay men and
lesbians. (http://www.zip.com.au/~josken/ageing.htm).
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Rainbow Visions:
A coalition of individuals and groups who initiate and support
actions that contribute to making the Hunter region a healthier, more enjoyable,
rewarding and culturally rich place for GLBTIQ people.
(
http://www.rainbowvisions.org.au/index.html).
The ALSO Foundation (9827 4999):
Works to enhance the lives of Victoria's
diverse GLBT communities to create and celebrate a diverse, strong, safe and
inclusive GLBTIQ community that contributes to and is respected by broader
communities. (http://www.also.org.au/).
Matrix Guild Victoria Inc. (0438 411 441):
Founded by and for the benefit of
lesbians over forty years of age. The Guild is committed to the support of appropriate
care and accommodation choices and alternative lifestyle options for older lesbians in
Victoria. (http://www.matrixguildvic.org.au).
The Victorian AIDS Council/Gay Men’s Health Centre (9865 6700):
A
community health service which aims to improve the health and social and emotional
well-being of the Victorian HIV positive and Gay, Lesbian, Bisexual and Transgender
communities. In particular, we are invested in bring the AIDS epidemic to an end.
(http://www.vicaids.asn.au/content/default.asp).
Vintage Men (9776 8667):
A social and support group for mature gay and bisexual
men and their friends. (www.geocities.com/vintagemen).
Gay and Lesbian Issues and Psychology Review:
In 2006 this journal was the first
peer-reviewed journal in Australian to focus on GLBTI Ageing. The issue was edited
by Dr Jo Harrison and Dr Damien W Riggs and is available on the Rainbow Visions
site, at: (http://www.rainbowvisions.org.au/GLIP_Review_Vol2_No2.pdf).
__________________________________________________________________________________
© 2008 Matrix Guild Victoria Inc
Exploring the Experiences of GLBTI Seniors in Aged Care Services
101
_____________________________________________________________________
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__________________________________________________________________________________
© 2008 Matrix Guild Victoria Inc
My People: Exploring the experiences of gay, lesbian, bisexual,
transgender and intersex seniors in aged care services
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