More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation

Page created by Jaime Daniel
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
More Than Ticking A Box:
                                 LGBTIQA+ People With
                                 Disability Talking About
                                 Their Lives
                                 Understanding experiences in Healthcare and
                                 Community to Improve Services For All

                                 Findings and Recommendations from a
                                 Victorian Research Project

More than ticking a Box.indd 1                                                 4/3/21 3:36 pm
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
More than ticking a Box.indd 2   4/3/21 3:36 pm
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
More Than Ticking A Box:
                LGBTIQA+ People With Disability
                Talking About Their Lives
                Understanding Experiences in Healthcare and
                Community to Improve Services For All

                Findings and Recommendations from a Victorian Research Project

                Project completed by:
                Amie O’Shea, J. R. Latham, Sherrie Beaver, Jake Lewis,
                Ruby Mountford, Mellem Rose, Anita Trezona, Patsie Frawley

More than ticking a Box.indd 1                                                   4/3/21 3:36 pm
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
2               Foreword
                          This project came about at the initiative of Pride      This project developed from a shared recognition
                          Foundation Australia whose philanthropic work           of the limited research or policy knowledge that is
                          supports charitable activities that benefit LGBTIQA+    grounded in the everyday lives of LGBTIQA+ people
                          people and allied communities in Australia. As part     with disability in Australia. As a small project, its
                          of their priority focus on LGBTIQA+ people with         scope was limited to the state of Victoria as an
                          disability, Pride Foundation Australia formed an        Australian case study. The Deakin University team
                          advisory committee of people with lived experience      committed to an additional goal for the project –
                          and/or professional experience in the field to          to include LGBTIQA+ people in meaningful ways
                          advise it on priority areas of need. Pride Foundation   and, from this, to grow their capacity to engage
                          Australia accepted the advice that policy and           with, and produce, research about the health and
                          practice needed to be informed by a better              wellbeing of LGBTIQ+ people and people with
                          understanding of barriers for LGBTIQ+ people            disability. This feature of the project reflects the
                          with disability in fully participating in Australian    values of Pride Foundation Australia, and was
                          society. Informed by Inclusion Melbourne’s              enthusiastically embraced and supported.
                          collaborations with Pride Foundation Australia and
                          Deakin University, the Disability & Inclusion team      Suggested citation
                          at Deakin University was approached to co-create a
                          qualitative research project to explore these issues.   O’Shea, A., Latham, J., Beaver, S., Lewis, J., Mountford,
                                                                                  R., Rose, M, Trezona, A., Frawley, P. (2020). More than
                                                                                  Ticking a Box: LGBTIQA+ People With Disability Talking
                                                                                  About Their Lives. Geelong: Deakin University.

More than ticking a Box.indd 2                                                                                                                4/3/21 3:36 pm
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
Table of Contents                                                     3
                Foreword                                                         2

                Acknowledgements                                                 4

                A note on terminology and our approach                           4
                     LGBTIQA+ sexuality and gender identity                  4
                     Disability                                              4
                     An intersectional approach                              5

                1. Background                                                    6
                     1.1 Health status and inequities                        6
                     1.2 Experiences of discrimination, violence and abuse   7
                     1.3 Inclusion and exclusion within communities          8
                     1.4 Access and engagementwith services                  9
                     1.5 National disability service system                  10
                     1.6 National policy context and implications            11
                     RECOMMENDATIONS                                         13

                2. Methodology                                                   15
                     2.1 The research team                                   15
                     2.2 Study participants                                  17
                     2.3 Data collection                                     17
                     2.4 Data analysis                                       18
                     RECOMMENDATIONS                                         20

                3. Findings                                                      22
                     3.1 Managing multiple identities                        22
                     3.1 Community                                           25
                     3.1 Accessing Services                                  28
                     3.1 The National Disability Insurance Scheme (NDIS)     33

                4. Discussion                                                    36
                     4.1 Visibility                                          36
                     4.2 Multiple identities                                 36
                     4.3 Understanding access and accessibility              37
                     RECOMMENDATIONS                                         39
                     4.4 Summary                                             40
                     4.5 Limitations                                         40
                     RECOMMENDATIONS                                         41
                     4.6 Peer Researcher reflections                         42

                5. Recommendations                                               44

                References                                                       48

More than ticking a Box.indd 3                                                        4/3/21 3:36 pm
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
4               Acknowledgements                                          LGBTIQA+ sexuality
                          We acknowledge the collaboration and expertise            and gender identity
                          provided by all those involved with the project,
                                                                                    The acronym LGBTIQA+ stands for lesbian, gay,
                          including the Research Advisory Group of Cameron
                                                                                    bisexual, transgender (or trans), intersex, queer/
                          Bloom, Nathan Despott, Ian Gould, Ki Hayward,
                                                                                    questioning, asexual, HIV positive and other terms
                          Ruth McNair, Amielle Penny and Alastair Stewart.
                                                                                    (such as non-binary and pansexual) that people use
                          We would especially like to thank the LGBTIQA+
                                                                                    to describe or express their sex, gender, sexuality,
                          people with disability who shared their experiences
                                                                                    and relationships. Intersex people are born with
                          with us by participating in focus groups for this
                                                                                    physical sex characteristics that don’t fit medical
                                                                                    norms for female or male bodies (Intersex Human
                                                                                    Rights Australia, 2020). The term ‘queer’ is often
                          The project was funded by a consortium of
                                                                                    used as an umbrella term to refer to sexually and
                          interested parties led by Pride Foundation Australia,
                                                                                    gender diverse people and communities. Although
                          which also includes Snow Foundation, Broadtree
                                                                                    historically used as a pejorative, LGBTIQA+ people
                          Foundation and the Victorian Government.
                                                                                    have reclaimed the term as an expression of
                                                                                    resistance, solidarity and sense of belonging to
                          We recognise the Traditional Owners of the
                                                                                    a broad community (Drummond & Brotman,
                          Aboriginal lands on which this research took place:
                                                                                    2014). As with many terms used to describe
                          the Wurundjeri, Boon Wurrung, Wadawurrung,
                                                                                    identity, the language used to describe sexual and
                          Taungurong, and Dja Dja Wurrung people of the
                                                                                    gender diversity is constantly changing. Sexual
                          Kulin Nation. We pay our respects to the past,
                                                                                    and gender identities are complex, dynamic and
                          present and future Elders and acknowledge that
                                                                                    constantly evolving and, as we address in this
                          Indigenous sovereignty has never been ceded.
                                                                                    report, situationally particular in response to
                                                                                    external factors (e.g., see Latham, 2017b). There
                                                                                    is no one preferred term used by all sexually and
                          A note on terminology                                     gender diverse people; people often have multiple,
                                                                                    overlapping identities, and many people and
                          and our approach                                          communities also have unique ways of describing
                                                                                    their identities, histories and experiences (National
                          All research is underpinned by a set of beliefs about     LGBTI Health Alliance, 2016). We did not ask
                          its topic. In the sometimes contested and culturally      participants which identity category or categories
                          specific case of sexuality, gender identity and           best describes their experience of sexual and
                          disability, it is particularly important to clarify how   gender identity.
                          we have understood and used these concepts.
                                                                                    Definitions of disability vary across contexts and
                                                                                    are influenced by various cultural and political
                                                                                    perspectives. A medical model of disability
                                                                                    frames disability in relation to the individual
                                                                                    and focuses primarily on bodily impairment
                                                                                    and medical conditions (Mckenzie & Macleod,
                                                                                    2012), an approach that also informs how people
                                                                                    with intersex variations are understood. We

More than ticking a Box.indd 4                                                                                                              4/3/21 3:36 pm
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
acknowledge the work of both disability and             An intersectional approach                               5
                intersex advocates in challenging the pathologising
                effects of the medical model (see for example           To understand the lives and experiences of
                Carpenter, 2018; Oliver, 1995), which tends to see      LGBTIQA+ people with disability we were informed
                disability as a problem to be fixed. In comparison,     by the work of American legal scholar Kimberlé
                a social model of disability recognises that a          Crenshaw’s theory of intersectionality (Crenshaw,
                range of social factors impact on how disability is     1990). An intersectional approach means examining
                experienced, and focuses instead on how attitudes,      the experiences of minority groups as facing
                practices and structures within society lead to         multiple and overlapping oppression (Crenshaw,
                oppression and exclusion of people with disability      1990). Critical disability scholars have found this
                (Oliver, 1990). In this sense, the social model of      work effective, as Dan Goodley (2017) writes,
                disability places responsibility for access, equity     because “A body or mind that is disabled is also
                and inclusion, not on the individual, but on how        defined by race, gender, trans/national location,
                broader social structures are set up in ways that       age, sexuality, religion and class … Intersectionality
                limit access to people with disability.                 is about not simply bringing together these
                                                                        markers and the theoretical responses but also
                The United Nations Convention on the Rights             considering how each supports the constitution of
                of Persons with Disabilities (CRPD) provides an         one another” (p. 44). An intersectional approach
                international human rights framework for the            has also been used in LGBTIQA+ research, including
                protection of the fundamental rights and freedoms       older LGBT people (Westwood, 2019), mental
                of people with disability. It is underpinned by a       health for LGBT people (Ruth, 2017) and LGBT
                bio-psycho-social perspective of disability (World      people of colour (Ramirez et al., 2018).
                Health Organization, 2002) which recognises
                disability as a multidimensional and evolving
                concept. In this view, disability occurs resulting
                from the interaction between people with
                impairments and attitudinal and environmental
                contexts that restrict their full and equal
                participation in society (United Nations, 2006).
                This is similar to sociologist Tom Shakespeare’s
                interactional model (Shakespeare, 2006;
                Shakespeare, 2013) which understands disability
                as a complex and dynamic interaction between the
                                                                                            “they want us to
                                                                                            tick a tick box,
                individual and their environment.
                Bio-psycho-social and interactional models of
                disability are clear that “people with disability”
                are not one homogenous group, and experiences
                of disability are different for everyone (Goodley,
                                                                                            but we want to
                2017). Throughout this report, reference to
                disability includes physical, cognitive, psycho-                            slide a slider”
                social, sensory, and/or forms of neurodiversity.
                We recognise that disability may be episodic or
                consistent, acquired or congenital, single or plural.
                We did not ask participants to report the details of
                their disability.

More than ticking a Box.indd 5                                                                                                   4/3/21 3:36 pm
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
6               1. Background                                                    There has been increasing recognition of the
                          The purpose of this project was to explore the                   importance of including people, particularly
                          experiences of LGBTIQA+ people with disability in                members of marginalised groups, in research. In
                          Victoria, Australia1, especially in relation to:                 LGBTIQA+ communities, we recall the work of
                             Î   Accessing health and social services                      queer people in community-based HIV/AIDS and
                                                                                           other health promotion work (Dowsett et al., 2001).
                             Î   Connecting with LGBTIQA+ and disability
                                                                                           The practices of inclusive research led by academics
                                 identities and communities
                                                                                           working with people with intellectual disability
                          In doing so the project aimed to also identify and               form another backdrop to this project (Johnson
                          propose recommendations for improvements to                      & Walmsley, 2003). In this research, we draw on
                          ensure services are more inclusive and responsive                both histories and a cumulative and deepening
                          to the contemporary needs of LGBTIQA+ people                     understanding of meaningful and authentic
                          with disability.                                                 research participation in sexuality research with
                                                                                           LGBTIQA+ people and people with disability
                          Historical oppression and social inequalities are key            (Frawley & O’Shea, 2020; O’Shea & Frawley, 2020).
                          factors influencing the experiences and lowered
                          health outcomes of both LGBTIQA+ people and
                          people with disability. For LGBTIQA+ people                      1.1     Health status and inequities
                          with disability, experiences of discrimination
                          and oppression are compounded by multiple                        People with disability are more likely to have
                          social identities, leading to multiple minority                  poorer overall physical and mental health than
                          stress (McConnell et al., 2018). ‘Minority stress’               people without disability (Dispenza et al., 2016),
                          refers to how marginalised groups experience                     while people with intellectual disability have
                          stress that arises from experiences of stigma and                lower life expectancy
                          discrimination, which leads to increased negative                and higher rates of
                                                                                                                    People with intellectual disability have
                          physical and mental health and social wellbeing                  avoidable deaths

                          outcomes (Correro & Nielson, 2020).                              at over twice
                                                                                           the rate of the
                          An intersectional perspective is therefore critical              general population
                          to understanding the way multiple social identities
                                                                                                                         the rate
                                                                                           (Reppermund et
                          and discriminatory processes and systems interact                al., 2020; Trollor et        of avoidable deaths than
                          to shape the lived experiences of LGBTIQA+                       al., 2017). Research         the general popula on
                          people with disability, their health and wellbeing,              has also shown that
                          and access to services, community and support.                   lesbian, gay and bisexual people have increased
                          The project approached this intersection at the                  likelihood of disability, poor mental health, and
                          collective levels of disability and LGBTIQA+ because             substance use than their counterparts (Fredriksen-
                          this is where most policy and service provision is               Goldsen et al., 2013). Further research on LGBTI
                          positioned. However we also acknowledge, and                     ageing demonstrates the cumulative effects of
                          within the scope available have made attempts                    this marginalisation over the life course, as older
                          to avoid, assumptions of homogeneity or                          LGBTI people have higher rates of disability,
                          generalisation, while also leaving space for more                depression, anxiety and loneliness than the general
                          intersecting experiences of marginalisation.                     community, as well as less social support (Crameri

                          1 We have prioritised Australian literature and service contexts wherever possible, although there is by necessity some
                          extrapolation of comparable international data.

More than ticking a Box.indd 6                                                                                                                      4/3/21 3:36 pm
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
22.7%                                                       LGBT people WITH DISABILITY have
                                                                                      TWICE the rates of ANXIETY
                           of LGBT respondents reported
                                                                                      and PSYCHOLOGICAL DISTRESS
                           a DISABILITY or long-term
                                                                                      than LGBT people without
                           HEALTH CONDITION
                       et al., 2015). People with intersex variations                                                                      7
                       may be coerced into medical interventions to
                       normalise sex characteristics in ways that do
                       harm, especially in regards to sexuality and sexual
                       health (Latham & Holmes, 2018). The effects of
                       iatrogenic trauma and ongoing stigma related to
                                                                                  Î   22.7% of LGBT respondents reported a
                       intersex sex characteristics also produce poorer
                                                                                      disability or long-term health condition
                       health outcomes for people with intersex variations
                       (Carpenter, 2018). For trans and gender diverse            Î   Females were more likely than males to report
                       people, the classification of their experiences as             having a disability or long-term illness
                       a mental disorder (‘Gender Dysphoria’) can also            Î   LGBT people with disability were more likely
                       produce an antagonistic relationship with medical              to have poor self-rated health
                       professionals, and a reluctance to access health and       Î   LGBT people with disability reported higher
                       other social services (Latham, 2017a).                         levels of psychological distress than those
                       Mental health is an important element of overall           Î   LGBT people with disability have twice the
                       health and wellbeing. A recent report by the                           more likely to
                                                                                      rates ofexperience
                                                                                               anxiety andviolence
                                                                                                            psychological distress
                       National LGBTI Health Alliance (2020) on the mental            than LGBT people without
                       health of LGBTIQA+ people showed that compared
                                                                                  Î   Rates ofLGBTIQ+
                                                                                               anxiety and psychological distress
                       to the general population, LGBTIQA+ people are                         people with
                                                                                      were considerably
                                                                                              disability higher for trans people
                       more likely to:
                                                                                      (Leonard et al., 2012)
                          Î    Have thoughts of suicide                                      people
                                                                                             with disability
                          Î    Attempt suicide in their lifetime
                                                                                1.2    Experiences of discrimination,
                          Î    Have engaged in self-harm in their lifetime                  general
                                                                                                    on abuse
                          Î    Experience and be diagnosed with depression
                               and anxiety                                      Experiences of discrimination, violence and
                                                                                                            LGBT people WITH DISABILITY have
                          Î    Experience psychological distress                abuse have a significant impact
                                                                                                            TWICE  onthe
                                                                                                                          health  and
                                                                                                                               of ANXIETY

                       As most national datasets
                                                 of LGBT respondents reported
                                                 a DISABILITY or long-term
                                                 HEALTH       and
                                                                                wellbeing of LGBTIQA+ peopleand and
                                                                                disability. People with disability
                                                                                                                       people with DISTRESS
                                                                                                            than LGBT    people
                                                                                                                   are more      without
                                                                                                                             likely to
                                                   gender    diverse            experience violence and discrimination than people
  in                   information on diverse sexual and gender identities,
                                                   respondents                  without disabilities (Frawley et al., 2015), and the
 ed                    the available data on the health status of LGBTIQA+
                                                   stated that they             incidence among LGBTIQ+ people with disability
 LLY                   people with disability is severely    limited. The
                                                   AVOID RELIGIOUS              is recognised to be even higher, despite issues of
Y                      influential Private Lives 2:INSTITUTIONS
                                                    The second national
                                                                                under-reporting (Leonard & Mann, 2018).
                       survey of the health and wellbeing of gay, lesbian,
                       bisexual and transgender (GLBT) Australians
                                                                                The risks of violence, including family/domestic
                       (Leonard et al., 2012)  to actualsome information
                                                                                violence and sexual violence are higher for women
                                           and/or poten
                       on people with disability.  The most  al recent report
                                           EXPERIENCES      OF                  with disability (Disabled People’s Organisations
                       details that:
                                           DISCRIMINATION                       Australia, 2017). LGBTIQA+ people with disability
                                                                                may also be at increased risk of abuse from carers
                                         22.7%                                  and support workers. LGBT
                                                                                                        For people WITH
                                                                                                            example, oneDISABILITY
                                                                                                                         third of have
                                                                                                     TWICE the rates of ANXIETY
                                                                                participants in a UK study reported experiences of
                                           of LGBT respondents reported
                                                                                                     and PSYCHOLOGICAL DISTRESS
                                           a DISABILITY or long-term            discrimination or poor   treatment by their personal
                                                                                                     than  LGBT people  without
                                           HEALTH CONDITION                     assistant or care workers because of their sexual

                                                                                                                  more likely to
                                                                                                                  experience violence

                                                                                                                  people with
       More than ticking a Box.indd 7                                                                                                      4/3/21 3:36 pm
More Than Ticking A Box: LGBTIQA+ People With Disability Talking About Their Lives - Institute for Health Transformation
than LGBT people without

          8               orientation or gender identity(Abbott, 2017).            Convention are weakened. It was not until General
                          Some participants also reported experiences of           Comments 6 and 7 that sexual orientation, gender
                          verbal, physical and sexual abuse by their personal      identity and sex characteristics were specifically
                          assistants or care workers (Abbott, 2017).               written into the interpretive architecture around
                                                                                   the Convention (United Nations, 2020).
                          more likely to
                          experience violence
                                                                                   1.3    Inclusion and exclusion within
                          people with                                                     communities
                                                                                   LGBTIQA+ people and people with disabilities
                          with disability                                          experience higher levels of social exclusion across
                                                                                   a range of settings, including schools, workplaces,
                          general                                                  social events, general community settings, and
                          popula on                                                healthcare (Frawley et al., 2015; Social Inclusion
                                                                                   Unit Department of the Prime Minister and
                                                                                   Cabinet, 2009; United Nations, 2016; Waling et al.,
                          In addition to broad societal discrimination,            2019).
                          LGBTIQA+ people with disability may also
                          experience discrimination from within                    Social support and networks have been shown to
                          the LGBTIQA+ and disability communities,                 be protective factors against poor general health,
                          compounding their sense of social marginality and        disability and depression among lesbian, gay
                          isolation (Abbott, 2017; Leonard & Mann, 2018).          and bisexual people (Fredriksen-Goldsen et al.,
                          Discrimination also leads to internalized stigma         2012) However, LGBTIQA+ people with disability
                          and victimisation, which have been shown to be           experience marginalisation and exclusion within
                          predictors of disability and depression among            both queer and disability communities (Dispenza
                          queer people (Fredriksen-Goldsen et al., 2012).          et al., 2016; Leonard & Mann, 2018; Vaughn et
                                                                                   al., 2015) and therefore report experiencing lower
                          The rights of people with disability were elucidated     social support from, and connection with both
                          in the United Nations Convention on the Rights of        communities (Leonard & Mann, 2018).
                          Persons with Disabilities (United Nations, 2006)
                          which was ratified by Australia on 3 May 2008.           People with intellectual disability are a group often
                          However, while it codifies the right to form a           left out of wider disability advocacy and research.
                          family (Article 23), rights for women with disability,   We draw on the early results of a consultation
                          and refers to the right to sexual health education       with members of Rainbow Rights, the self-
                          and reproductive health care (Article 25), the           advocacy organization of LGBTIQA+ people with
                          Convention fails to explicitly refer to sexuality,       intellectual disability in Victoria (Rainbow Rights,
                          gender identity or intersex status (Jaramillo Ruiz,      2020). LGBTIQA+ people with intellectual disability
                          2017; Schaaf, 2011; Shah, 2017). This is an omission     described a number of barriers to inclusion
                          which itself tells of the contentious nature of          including lack of access to health services, negative
                          sexuality in people’s lives and which leaves holes in    (ableist, homophobic or heterosexist) attitudes of
                          the opportunities for people with disability to have     health professionals, income inequality and under
                          their sexual rights acknowledged and supported           diagnosis of mental illness. They call for social,
                          (Frawley & O’Shea, 2019). Without support for            economic, political and civic inclusion for LGBTIQA+
                          the right to be sexual, other rights codified in the     people with intellectual disability, describing it as:

More than ticking a Box.indd 8                                                                                                              4/3/21 3:36 pm
“everyone being able to
le with intellectual disability have
                       participate fully in social,
                                                                                                               34.6%                               9
                                                                                      22.7%                    of LGBTIQA+ par cipants in

                                                                                                                                                 LGBT people WITH D
                       economic, political and civic life;                                                     a Victorian survey reported       TWICE the rates of A
                                                                                      of LGBT respondents reported
                                                                                                               OCCASIONALLY OR USUALLY
                       by getting a good education,                                   a DISABILITY or long-termHIDING THEIR SEXUALITY
                                                                                                                                                 and PSYCHOLOGICA
                       receiving an adequate income,                                                                                             than LGBT people w
 the rate                                                                             HEALTH CONDITION         OR GENDER IDENTITY
                       having a job, being politically                                                         when accessing services
of avoidable deaths than
the general popula on aware and being connected to
                       family, friends, the LGBTIQ+ and                                One study showed that 34.6 per cent of LGBTIQA+
                       mainstream community”                                           participants in a Victorian survey reported
                                                                                       occasionally or usually hiding their sexuality or
                                              (Rainbow Rights, 2020 p.3)               gender identity when accessing services (Leonard
                                                                                       et al., 2008). For example current religious
                        In the recent consultation conducted by The Social             exemptions give some religious private schools
                        Deck to inform the next national disability plan,              in Australia “permission to discriminate against
                        LGBTIQA+ participants reported that being LGBTIQ+              transgender and gender diverse students” (Smith
                        and having a disability increases experiences of               et al., 2014 p.49). In the same study, 27% of trans
                        discrimination, and that people were not always                and gender diverse respondents stated that they
                        accepted in one group or the other. They also                  avoid religious institutions due to actual and/or
                        highlighted the cross impacts for people who                   potential experiences of discrimination. The current
                        identify as LGBTIQA+ with disability, and additional           Religious Freedom Bills2 propose unprecedented
                        barriers to being included and feeling a sense of              protection of the religious beliefs of some, over
                                                                                                                                                        more likely to
                        belonging (The Social Deck, 2019).                             those of others including those of no faith. This is of          experience v
                                                                                       significant concern to both LGBTIQA+ and disability
                                                                                       communities, for example section 41 of the                       LGBTIQ+
                                                                                                                                                        people with
                        1.4       Access and engagement                                Religious Discrimination Bill, which would “allow
                                  with services                                        people who wish to express prejudiced, harmful
                                                                                       or dangerous views about women, people with                      people
                        A number of systemic barriers impact on access                 disabilities, LGBTQI+ people and others” (Equality               with disabilit
                        to and utilisation of services by LGBTIQA+ people              Australia, 2019 p.2).                                            general
                        with disability, including the discriminatory                                                                                   popula on
                        and stigmatising attitudes held by professionals
                        working in the health, social and disability sectors
                        (Leonard et al., 2012; Mulé et al., 2009) Similarly,
                        professionals often lack the knowledge, skills and
                        confidence to deliver inclusive and responsive
                                                                                              27%           of trans and
                        services of
                                 to LGBTIQA+
                                    LGBTIQA+ parpeople  with in
                                                              disability, and are                           gender diverse
                        not provided   with adequate   training, resources and                              respondents
                                 a Victorian  survey reported
                                                                                                            stated that they
                        other supports    to improve
                                 OCCASIONALLY     ORtheir  practice (Leonard &
                                                                                                            AVOID RELIGIOUS
                        Mann, 2018).       THEIR SEXUALITY
                                 OR GENDER IDENTITY
                                 when accessing services

                                                                                                    due to actual
                        2 Religious Discrimination Bill 2019, Religious Discrimina-                 and/or poten al
                        tion (Consequential Amendments) Bill 2019, Human Rights                     EXPERIENCES OF
                        Legislation Amendment (Freedom of Religion) Bill 2019

        More than ticking a Box.indd 9                                                                                                             4/3/21 3:36 pm
10                There is a lack of understanding among health              1.5    National disability service
                          professionals and disability services regarding                   system
                          the LGBTIQA+ community, which appears to be
                          a particular issue in regional and rural areas, and        Issues of sexuality and relationships are largely
                          some faith based institutions (Barrett et al., 2015;       medicalised and otherwise overlooked in health-
                          Leonard et al., 2012). The consultation report             based disability services such as acquired brain
                          also noted the need to better understand the               injury or rehabilitation (O’Shea et al., 2020). We
                          experiences LGBTIQ+ people with disability and the         focus here on the National Disability Insurance
                          way policy decisions impact on them (The Social            Scheme (NDIS) as the primary locus for disability
                          Deck, 2019).                                               services and supports.

                          The most recent Private Lives Survey (Leonard et           In 2011 the Productivity Commission conducted a
                          al., 2012) found that compared to LGBTIQA+ people          national enquiry into the National Disability Long-
                          without disability, LGBTIQA+ people with disability        term Care and Support Scheme, which found that
                          were:                                                      the disability support system was under funded,
                             Î    Less likely to have private health insurance       fragmented and inefficient, that services were not
                             Î    More likely to have a regular GP, and to see       being provided equitably, and that it was failing to
                                  them more often                                    meet the needs of many people with disabilities and
                                                                                     their families (Productivity Commission, 2011). A key
                             Î    More likely to see a counsellor, psychologist or
                                                                                     recommendation of the report was the introduction
                                  social worker
                                                                                     of a national insurance scheme that provides funding
                             Î    More likely to access psychiatric services         for long-term high quality care and support for all
                             Î    Slightly less likely to have pap or mammogram      people with significant disabilities.
                             Î    Less likely to have ever had a HIV test            The NDIS was first introduced in Australia with the
                                                                                     passing of the National Disability Insurance Scheme
                          An earlier report on the service access experiences
                                                                                     Act (2013) and the subsequent establishment of
                          of LGBTIQA+ people with disability described how:
                                                                                     the National Disability Insurance Agency (NDIA)
                             Î    LGBTIQA+ people with disability experience         (National Disability Insurance Agency, 2020b). The
                                  exclusion from mainstream disability services      purpose of the NDIS is to support the independence
                             Î    Trans and gender diverse people with               and social and economic participation of people
                                  disability experience greater discrimination       with disability, and empower them to exercise
                                  when accessing services than other LGBQ            choice and control over their support needs and
                                  people with disability                             goals (Department of Health and Human Services,
                             Î    LGBTIQA+ people with disabilities from             2018).
                                  culturally diverse backgrounds experience
                                  multiple and intersecting forms of                 Rollout of the NDIS commenced in 2016, with
                                  discrimination and barriers to accessing           nearly 380,000 people currently accessing the
                                  services (Mann et al., 2006). This is              NDIS, including nearly 84,000 people living in
                                  particularly significant given that the 2016       Victoria (National Disability Insurance Agency,
                                  Census identifies that 49.1% of Victorians,        2020a). Within the next five years it is expected
                                  or one of their parents, were born outside         the NDIS will provide $22 billion per year to an
                                  Australia (Australian Bureau of Statistics,        estimated half a million people with ‘permanent
                                  2017).                                             and significant’ disabilities (Department of Health
                                                                                     and Human Services, 2018).

More than ticking a Box.indd 10                                                                                                              4/3/21 3:36 pm
People with
                NDIA doesdisability  havecollect data that
                            not currently                                together’ project that developed a peer support            11
           supports monitoring of LGBTIQA+ demographics.                 approach, training and a toolkit resource to develop                        LGBT
           While data is collected on participants’ “sex”,               capacity in the NDIS respondents
                                                                                                workforce. Further current                           TWIC
                                                                                      of LGBT                reported
                                                                                                                                                     and P
           information is not collected regarding gender                 NDIS research   grants identify
                                                                                      a DISABILITY       LGBTIQA+ people
                                                                                                    or long-term
                                                                                                                                                     than L
            rate or sexuality, meaning that the number of                             HEALTH
                                                                         with a disability as a CONDITION
                                                                                                core cohort for funding for
           LGBTIQA+ people accessing the NDIS is not known.              community capacity building. The absence of an
      of avoidable deaths than
                                                                         overall plan to guide work and to clearly articulate
      the general popula on
             Î In late 2019 a review of the NDIS legislation             a commitment to addressing the specific needs of
                 examined participants’ experiences of the               LGBTIQA+ people with disability is a current issue
                 NDIS and opportunities to improve systems               for the sector.
                 and processes. Specifically, it focused on
                 the legislative changes required to improve
                 participants’ experiences with the NDIS,
                 rather than the broader range of operational
                 and implementation issues (Tune, 2019).
                In relation to LGBTIQA+ people with disabilities,
                the review recommended that any amendment
                to the legislation should include amendments to
                the principles of the NDIS Act to acknowledge
                                                                         1.6    National policy context and
                the unique experiences of women and LGBTIQA+
                people with disability, as agreed previously by
                                                                         Current policy and practice guidelines on disability
                Council of Australian Governments (COAG) in 2016.
                                                                         care and support in Australia do not adequately
                The review also set out the proposed elements
                                                                         acknowledge the unique experiences of LGBTIQA+
                of a Participant Service Guarantee, which is to be
                                                                         people with disabilities, or outline actions and
                legislated through NDIS rules in July 2020. ‘Respect’
                                                                         strategies to address specific support and care
                was identified as one of six key engagement
                principles of the Guarantee, which includes a
                commitment to ensuring staff have a high level
                                                                         The National Disability Strategy (“the Strategy”)
                of training in diversity, including on practices for
                                                                         was developed in partnership between the
                working with LGBTIQA+ people (Tune, 2019).
                                                                         Commonwealth, State and Territory Governments
                                                                         through the Council of Australian Governments.
                Despite acknowledging that experiences of
                                                                         The Strategy set out a ten-year plan for improving
                discrimination and social exclusion are significant

                barriers to people accessing and navigating the
                NDIS, LGBTIQA+ people have not been identified
                                                                         the lives of people with disability, their families
                                                                         and carers, by guiding activities across  mainstream
                                                                                                             of trans and
                                                                         and disability specific areas of public     diverse
                as a priority community of for
                                            LGBTIQA+   par
                                               assertive    cipants in
                                                         outreach                                            respondents
                                                                         and driving improvements in performance
                or enhanced access support (Tune, 2019).reported
                                        a Victorian  survey   Other                                          stated that they
                                        OCCASIONALLY OR USUALLY          and outcomes for people with disability
                marginalised communities are represented in such                                             AVOID RELIGIOUS
                                        HIDING THEIR SEXUALITY           (Commonwealth of Australia, 2011).
                strategies, including Cultural  and Linguistically                                           INSTITUTIONS
                                        OR GENDER     IDENTITY
                Diverse people, and inwhen
                                         the Rural and Remote,
                                               accessing  servicesand    Although the Strategy acknowledges that a range
                Aboriginal and Torres Strait Islander Strategies
                                                                         of personal characteristics,due
                                                                                                       including  gender and
                                                                                                           to actual
                (National Disability Insurance Agency, 2020c).
                                                                         sexuality, intersect with disability
                                                                                                      and/or poten alpeople’s
                                                                                                              to shape
                Some research has been undertaken to inform
                                                                         needs, priorities and perspectives,          OFsensitive
                                                                                                               it is not
                approaches to workforce needs including the ‘Out                                      DISCRIMINATION
                                                                         to these factors. Instead, the  Strategy adopts a

More than ticking a Box.indd 11                                                                                                     4/3/21 3:36 pm
12               universal approach to its policy directions, goals     Furthermore, despite references to LGBTIQA+
                          and intended outcomes. In a recent review of           and the sexual/gender rights of people with
                          the implementation of the Strategy, meeting the        disability across a range of regulatory frameworks
                          specific needs of diverse groups was identified as a   and laws (including equal opportunity and anti-
                          key gap and priority for future policy development     discrimination legislation, NDIS Practice Standards,
                          and implementation (Davy et al., 2018). The review     Disability services legislation, and the Victorian
                          also emphasised the importance of ensuring that        Charter of Human Rights and Responsibilities),
                          representatives from diverse groups are involved in    there are no intersectional statements that
                          all aspects of policy design and implementation.       combine LGBTIQA+ and disability in any of these
                                                                                 frameworks or laws. In particular, there are no
                          While policy statements acknowledging the              clauses that specifically require the application of
                          unique experiences of LGBTIQA+ people with             such rights and practice to people with intellectual
                          disability have symbolic importance and may            disability, a population often quietly excused from
                          increase their visibility among service providers      domains such as the expression of sexuality and
                          and the broader community, clear policy actions        gender due to underlying assumptions about
                          and practice guidelines are required to ensure         capacity.
                          services are inclusive of and responsive to the
                          needs of LGBTIQA+ people with disability. The NDIS     The Victorian State Disability Plan (2017) included
                          Quality and Safeguards Commission is responsible       detailed action points specific to LGBTIQ people.
                          for registration and regulation of NDIS service        Although such Plans are not formal regulatory
                          providers. Independent third party auditing and        frameworks, this resulted in specific grant funding
                          certification are conducted using the new NDIS         targeting LGBTI projects, and encouraged LGBTI
                          Practice Standards, representing an important          inclusive practice in services. The Plan is currently
                          element in monitoring and assuring LGBTIQA+            under review, the consultation paper for which
                          inclusive practice. While a number of the standards    acknowledges that people with disability may often
                          are relevant and applicable to LGBTIQA+ people         experience less control over their intimate lives
                          with disability there is a lack of meaningful          (Department of Health and Human Services, 2017).
                          reference to their rights. However, in light of        Clearly, persistent advocacy has been effective
                          repeated references to diverse characteristics such    but is required to retain this focus and to develop
                          as age, cultural background, religious background,     specific guidelines, indicators and directives.
                          and abilities in the Practice Standards, there
                          is a conspicuous lack of specific reference to         The development of the next National Disability
                          ‘LGBTIQA+’, ‘queer’, ‘sexual orientation’, ‘gender     Strategy, and ongoing reforms under the NDIS
                          identity’ or ‘intersex status’ in any of the NDIS      present significant opportunities to prioritise the
                          Practice Standards and supportive guidelines.          needs of LGBTIQA+ people with disabilities in public
                          Requiring Approved Quality Auditors (AQA) to           policy. Policy responses should be co-designed
                          infer or elucidate such considerations rather          with LGBTIQA+ people with disabilities, and should
                          than providing explicit reference and indicators       specify actions that address service delivery needs/
                          means that the capacity of the scheme to effect        priorities, effective communication and information
                          and drive change is limited (N.Despott, personal       provision, increasing the competence/capability
                          communication, June 22, 2020). As of early 2020,       of the workforce, and improving data collection,
                          the mandated training course for AQAs includes no      monitoring and evaluation.
                          references to LGBTIQA+ people.

More than ticking a Box.indd 12                                                                                                          4/3/21 3:36 pm

                   The following recommendations are suggested in order to address gaps in the inclusion of
                   LGBTIQA+ people with disability in a range of community settings.
                   1. Publicly funded services should be required to create and make public their statements and
                      plans for equal access for LGBTIQA+ people with disability, supported with relevant academic

                  2. LGBTIQA+ people with disability should be acknowledged as a priority community for
                     focussed outreach or enhanced access support within the NDIS. This may occur within the
                     NDIS and through funding advocacy services.

                  3. An opportunity to discuss and review the NDIS LGBTIQA+ Strategy should be arranged at
                     local or state government levels as a matter of priority. This could be trialled within one
                     region to determine how to best ensure access and cultural safety

                  4. Create state-based working groups with the assistance of experienced practitioners on
                     LGBTIQA+ people with disability, to bring together health service providers, LGBTIQA+
                     organisations, disability services and LGBTIQA+ people with disability to learn from each and
                     share ideas on inclusive practice. The work of LGBTIQA+ people with disability within these
                     groups should be appropriately recognised and remunerated. These groups will:
                        4.1 Establish clear channels for policy reform across all levels of government
                        4.2 Create connection and peer development for LGBTIQA+ people with disability
                        4.3 Advise services and departments on inclusive practices for LGBTIQA+ people with
                        4.4 Promote opportunities in collaborative research development, including grant funding
                        4.5 Organise workshops, seminars and other events to develop ideas and share resources
                            more broadly

                  5. Further research by tertiary institutions and independent research bodies into the
                     experiences of people with disability and LGBTIQA+ people committed to developing the
                     research capacity of LGBTIQA+ people with disability as an integral part of these research

                  6. Any funded project connected to disability or LGBTIQA+ topics should expressly aim to
                     include LGBTIQA+ participants, and report against this outcome

More than ticking a Box.indd 13                                                                                      4/3/21 3:36 pm
More than ticking a Box.indd 14   4/3/21 3:36 pm
2. Methodology                                                     of social structures and subverts power dynamics
                                                                                   within traditional research (Carmack, 2018; Owen &
                An overarching commitment to developing and                        Friedman, 2017).
                using an inclusive research approach guided the
                methods of this project. Inclusive research is guided              Strong feedback loops to the research environment
                by an evolving set of practices which encompass                    were built into the project ensuring findings were
                a range of approaches and methods (Nind, 2014).                    being co-developed and used to inform subsequent
                The significant element of inclusive research is                   action research cycles of the overall project. Deakin
                that people who were traditionally considered                      University Human Research Ethics Committee
                the objects of research are instead active in roles                provided approval for the project (2019-207).
                including the instigation of ideas, and the collection
                and analysis of data. From the outset, this
                project centred LGBTIQA+ people with disabilities                  2.1     The research team
                in a number of roles, not simply as research
                participants, but as members of the Research                       This research project was conducted by a team
                Advisory Group, as peer researchers,3 and through                  comprised of academic researchers and peer
                attempts toward meaningful opportunities for                       researchers employed by Deakin University. The
                participants to access and engage in data collection,              academic research team was led by Dr Amie O’Shea
                analysis and the project’s outputs.                                with Dr J. R. Latham and Associate Professor
                                                                                   Patsie Frawley, and additional research assistance
                Academic work reflecting on the development of                     from Dr Anita Trezona. The peer researchers on
                inclusive research has recognised the importance                   the team were Sherrie Beaver, Jake Lewis, Ruby
                of making its practices available for critical scrutiny            Mountford and Mellem Rose. The team was formed
                (Johnson & Walmsley, 2003; O’Shea, 2016), hence                    to reach across a breadth of lived and professional
                we present these in detail within this report.                     experiences, genders, sexualities and research
                Drawing on Participatory Action Research (PAR)
                methodologies, the research aimed to take an                       Peer researchers brought their leadership,
                iterative and action-focussed approach across the                  creativity, experiences and connections with
                project planning, research (data collection, analysis)             diverse communities across gender, sexual identity,
                and outcomes being undertaken iteratively.                         advocacy,4 and various experiences of disability.
                Like inclusive research, PAR represents a range                    Academic researchers brought their knowledge
                of theoretical orientations and methods that                       and experience of university bureaucracies,
                “promote pluralism and creativity in the art of                    research methods, human research ethics, and
                discovering the world and making it better at the                  a commitment to building the capacity of peer
                same time” (Chevalier & Buckles, 2019 p. 3). PAR                   researchers to ensure the ‘nothing about us
                aims to effect change within queer and disability                  without us’ dictum of inclusive disability research
                research, as it promotes self-advocacy, facilitates a              was practiced in this project. This report was led
                critical-consciousness raising, encourages analysis                by the academic researchers with input from the

                3 We use the term ‘peer researchers’ to describe LGBTIQA+ people with disability to capture the significance of shared
                experience. Other commonly used terms include ‘community researcher’ or ‘co-researcher’.
                4 We acknowledge advocacy work comes from funded disability advocacy organisations, self-advocacy (a term in the ac-
                ademic literature often referring to advocacy when performed by people with intellectual disability in particular), and the indi-
                vidual advocacy that people engage in which is often not funded, but comes as part of engaging with services and systems
                which construct them

More than ticking a Box.indd 15                                                                                                                     4/3/21 3:36 pm
                                                                                 Research Paper
                                                                      Experiences in
                                                                    community                     Knowledge of
                                                                 Connecons with                university systems
                                                            Gender                                      research ethics
                                                         Sexual identy
                                                                                                        Research methods
                                                    Experience of disability

                                                                  Leadership                    Building capacity to work
                                                                                                further in research

                                      Peer Researchers                                                               Academic Researchers

                          whole research team and Research Advisory Group.                 participant recruitment, which involved the
                          Reflections by the peer researchers on this project              design of written information and the creation of
                          can be found at 4.6 of this report.                              information in Auslan as well as its subsequent
                                                                                           circulation online and through established
                          The academic researchers were committed to the                   networks. The peer researchers worked in pairs
                          peer researcher project, in part with the knowledge              to plan focus groups: identifying the location,
                          that inclusion and opportunities created during this             venue, date and time, catering and in deciding if/
                          project have the potential to feed directly back into            when they would like support from the academic
                          communities. In order to recognise the strengths                 researchers during the focus group. In order
                          and contributions of each team member, we spent                  to ensure the research complied with Human
                          time getting to know each other and hearing about                Research Ethics, the academic researchers
                          our work in the shared spaces of LGBTIQA+ and                    managed the consent process and operating digital
                          disability advocacy, community organising, activism              voice recorders used for producing transcripts of
                          and research. We became familiar with the way that               the focus groups. Peer researchers also advised on
                          professional-personal boundaries are dismantled by               access needs including the provision of suitable
                          holding multiple forms of knowledge as valued, and               Auslan-English interpreters, accessible venues,
                          asked questions of each other to understand our                  establishing focus group guidelines, making
                          different perspectives and areas of expertise.                   available a ‘quiet room’ for if/when participants
                          In practice this meant that elements of the research             needed a break, and the use of a ‘talking stick’ to
                          method were led by different members of the                      ensure all participants were able to contribute.
                          research team. The focus groups were run by peer
                          researchers with academic researchers present for                During data collection, peer researchers facilitated
                          support if needed. Writing this report was led by                the focus groups in pairs, with the exception of one
                          the academic team with consultation and feedback                 Deaf5 focus group, which was facilitated in Auslan
                          from the peer researchers and the Project Advisory               by one peer researcher. In all cases, members of
                          Group.                                                           the academic research team attended the focus
                          Key tasks of the peer researchers included                       group to provide support as needed. In recognition

                          5 We follow the convention of capitalised Deaf when referring to people who identify as members of a cultural and linguistic
                          minority, who use Auslan Ladd, P. (2003). Understanding deaf culture: In search of deafhood. Multilingual Matters.

More than ticking a Box.indd 16                                                                                                                          4/3/21 3:36 pm
of peer researchers’ dual role within the research            Group of focus areas and possible recruitment                    17
                team and their identification with the participant            opportunities.
                group, opportunities to debrief were prioritised.
                Peer researchers participated in a short debrief              2.3    Data collection
                with academic researchers immediately after the
                                                                                                    evah ytilibasid lautcelletni htiw elpoeP
                focus group, and a more detailed debrief 2-4 days             Data collection was conducted through four focus

                after each focus group, to reflect on the issues              groups conducted by the peer researchers. Two
                raised, share  er stnednasopthey
                                             ser Tarose,
                                                   BGL foand access
                                                                              focus groups were held in the Melbourne and
                            mret-gnol ro YTILIBASID a
                support in solidarity.                                        one in Bendigo, which were conducted in spoken
                                   NOITIDNOC HTLAEH                                                                             etar eht
                                                                              English. Peer researchers identified the location for
                Peer researchers also attended the Research                   focus groups with an eye to cultural
                                                                                                              naht shand
                                                                                                                            d elbadiova fo
                Advisory Group meetings, to present their work                                                  n o a l u p
                                                                              familiarity, using venues provided by the Cityo p larof
                                                                                                                                    eneg eht
                and to hear reflections and feedback from the                 Melbourne’s Multicultural Hub, Thorne Harbour
                group. Several significant elements of the project            Health and Expression Australia.6
                came from these discussions, including the
                idea of a Deaf focus group in Auslan, and the                   One focus group was conducted in Auslan by
                production of the final report in easy language.                Sherrie Beaver and Amie O’Shea in recognition of
                Below we detail the peer researchers’ roles in                  the recruitment connection to the Deaf community
                data collection and analysis. In particular, the                made possible by peer researcher Sherrie Beaver
                development of guidelines for the focus groups by               and academic researcher Amie O’Shea (a fluent
                the peer researchers was critical to this project’s             Auslan user and interpreter). Drawing on the
                methodology, as well as its success in recruitment.             creativity and flexibility afforded within an inclusive
                                                                                PAR methodology, Sherrie and Amie worked
                                                                                together to plan this focus group. All other focus
                                                                                groups invited people with any experience of
                                                                                disability, and while we do not differentiate the
                                                                                data analysis on disability type, we note here that
                                                                                this included people who identified with various
                                                                                sensory, physical, intellectual disability as well as
                                                                                neurodiversity, acquired brain injury and complex
                                                                                communication needs. We actively resisted any
                                                                                perceived hierarchy of disability, or privileging of
                2.2 Study participants                                          cognition and sought to consider all perspectives
                                                                                and contributions as equally valued. We did not ask
                Research participants were people aged 18 years or              participants to outline their experience of disability,
                over who self-identified as LGBTIQA+ people with                or their identification within LGBTIQA+. The main
                disability. In line with the definitions given earlier          reason we made this decision was political: we

                in the report, there were no additional or more
                specific eligibility criteria. There were 29 people
                    dna snart fo
                who participated in focus groups for this project,
                                                                                know that people with disability are often required

                                                                                to explain their disability and its effects, to their
                                                                                own detriment, and that people who identify
                 esrevid redneg
                recruited  online   and  through  personal networks   of         ni stnathe
                                                                                within      pic acronym
                                                                                                  rap +AQILGBTIQA+
                                                                                                            TBGL fo can feel pressured
                                                                                 d et r o p  er ye vrus nair otciwithin
                                                                                                                 V a a particular
                      taht detateam.
                                 ts Recruitment was iterative, with             to justify their inclusion
                                                                                YLLAUSU RO YLLANOISACCO
                 OIGILER Dguidance
                             IOVA       from the Research Advisory              category. We sought to avoid these pressures, and
                                                                                    YTILAUXES RIEHT GNIDIH
                                                                                          YTITNEDI REDNEG RO
                                                                                     s  e c ivres gnissecca nehw
                6 Formerly the Victorian AIDS Council and Victorian Deaf Society respectively

                            lautca ot eud
                         la netop ro/dna
                         FO SECNEIREPXE

More than ticking a Box.indd 17                                                                                                                4/3/21 3:36 pm
18                instead focussed our limited time together around          2.4 Data analysis
                          experiences of health and community services.
                          Lastly, we recognise the vast differences which can        Qualitative data analysis of focus group transcripts
                          come within disability and LGBTIQA+ identities             and follow up contributions was conducted using
                          such as family support, congenital or acquired             thematic analysis and iterative categorisation
                          disability, and level of engagement with services.         across three rounds described below. The
                          Factors outside these identities which also inform         process was designed to facilitate a collaborative
                          their experiences include cultural background, age,        development of meaning and the analytic process
                          location and so on.                                        of progressive focusing (Srivastava & Hopwood,
                                                                                     2009). Thematic analysis provides a flexibility which
                          The focus groups were supported by guidelines              accommodates the needs of the research project,
                          developed in response to requests from the peer            to capture a complex range of sexual, gender
                          researchers. The guidelines provided a rundown             and disability identities. By embracing researcher
                          of events (Acknowledgement of Country, consent             subjectivity, it recognises the researchers’ active
                          forms, introductions, and a list of potential interview    role within the research (Braun & Clarke, 2013)
                          questions and topics). The guidelines also included        which recognised our position on valuing the voices
                          notes for various scenarios, such as what to do            of peer researchers within the study. Iterative
                          if group discussion went ‘off track’, if someone           categorisation is a technique emerging from
                          arrived late to the group, or if discussion stalled. The   addiction studies (Neale, 2016) which was adapted
                          guidelines included a suggested list of themes for         here to allow for its collaborative approach and the
                          discussion, such as employment, housing, finances,         dual expertise of peer researchers.
                          relationships, services, and disability/LGBTIQ
                          communities. Ethical and safety considerations             This use of iterative categorisation meant that
                          were also addressed in line with discussion from           analysis of the transcripts freely involved reflections
                          the Research Advisory Group, and included how              of the peer researchers, who could identify
                          to support a participant who became distressed,            their own connections with the source material
                          and how to maintain confidentiality. The question          to expand our understanding. Informed by the
                          style was open, allowing participants to guide the         work of Voronka (2019) it also meant that peer
                          discussion and share the issues of most significance       researcher engagement was not limited to a pseudo
                          to them. The first question was ‘what brought you          ‘professional’ self, which required elimination of
                          here today?’, which was followed by open ended             other equally valued selves or to further question
                          questions such as ‘what do you think is the most           the ‘authenticity’ of peer identities. Instead, it
                          important thing we need to know?’ and ending with          reflected the concept of praxis put forward by
                          ‘is there anything else you’d like to tell us?’            Friere (1986) in his work on liberation for the
                                                                                     oppressed as ‘reflection and action upon the world
                          Focus groups were digitally recorded for the               in order to transform it’ (p. 33).
                          production of typed transcripts. Participants were
                          provided with a pen and paper if they wanted to            The approach taken to iterative categorisation can
                          make notes, or write any extra reflections to share        be seen in this section.
                          with the research team. Some participants and              Unstructured qualitative data such as focus group
                          some peer researchers chose to follow up their             transcripts often requires some organisation
                          contribution in writing, which was included in the         or order before deeper work can commence
                          analysis process described below.                          (Neale, 2016). Accordingly, round 1 was led by
                                                                                     the academic research team and led to the broad
                                                                                     identification of overarching topics. An accessible

More than ticking a Box.indd 18                                                                                                                4/3/21 3:36 pm
summary of each theme was then sent to peer                a whole. In this they were supported by each             19
                researchers for their review and comment.                  others’ knowledges and experience, also drawing
                Although full transcripts were available, peer             on the expertise in lived experience, policy and
                researchers preferred to work with the summary,            professional experience held by members of
                leaving it to function as both an access modification      the Research Advisory Group. Our processes
                and in scaffolding the upcoming process of analysis.       at this point were affected by the situation
                                                                           surrounding the COVID-19 pandemic and social
                Round 2 involved a half-day workshop with the              isolation regulations introduced by the Victorian
                whole research team. The four peer researchers             Government on the 21st of March 2020, which
                had each worked with one of the early overarching          precluded in-person project meetings. Instead, we
                topics, and prepared their comments to some                completed this part of the report via email or video
                prompt questions to share with the group. This             call, rather than in a group face-to-face meeting as
                approach was requested as having time to develop           planned.
                ideas and present their thoughts was experienced
                as more accessible by members of the peer                  This reflexive approach to analysis was designed to
                research team. The prompt questions asked them             incorporate the multiple experiences held by peer
                to: explain the theme to the others, giving some           researchers as they related across axes of disability,
                examples from the focus group; reflect on how this         gender and sexuality. We sought to encourage
                theme came out in the focus groups they attended;          engagement with and reflection on the data in
                share any other thoughts on the theme. The notes           a way which would maximise involvement and
                from this workshop were presented as issues listed         recognise these layers of expertise.
                in bullet points, which were then circulated to the
                team in advance of round 3 of analysis.                    Many things were discussed, including visible
                                                                           versus invisible disabilities, experiences of recent
                For round 3, peer researchers reviewed the notes           diagnosis, and what can happen when access needs
                from round 2 on their own identified theme and             for one group may make things more difficult for
                one chosen other. At another half day workshop             another. The peer researchers talked about their
                with the whole research team, peer researchers             need for a space in which it was safe for them
                again summarised the bullet points and were                to express anger, grief and pride as we worked
                asked to identify the most pressing or highest             through the analysis of the focus group transcripts.
                priority issues. This led to a further distilling of the   At these times it was the role of the academic
                topics, identified emergent cross-topic themes and         researchers to hold that space open and reflect on
                provided more direction for the research findings.         what could be learned not only about the topic at
                                                                           hand, but about facilitating meaningful inclusion.
                The entirety of this report reflects and expands
                insights from these analysis workshops. The
                recommendations were developed after the
                rest of this report had been drafted; when the
                research team was able to view the project as

More than ticking a Box.indd 19                                                                                                     4/3/21 3:36 pm
You can also read