Two main themes emerged from our data analysis: the difficulties of managing multiple identities when trying to access services, and community supports that produced pride, connection and solidarity, as well as practical information. Difficulties in managing multiple identities when attempting to access services was an overwhelming theme apparent in all focus groups. Participants talked about feeling ‘split’ between different parts of themselves, the stress of constantly coming out in different ways to different people, and the difficulties of making decisions about when, how and to whom they could disclose information to, and when they needed to mask parts of themselves in order to feel safe and/or receive services. Participants reported the importance of community-led services and especially supportive environments that they had found online, which could create a sense of pride and purpose that instilled confidence in accessing services. Yet participants also described feeling excluded from both LGBTIQA+ communities and disability communities that each failed to recognise LGBTIQA+ people with disability as part of these communities, with meaningful and important connections and contributions to make.
4.1. Managing Multiple Identities in Practice
Our research approach gave participants the opportunity to describe many layers of identity. We conceptualise identity as ‘how I am, and how I am known’, noting there may be a discrepancy between those elements [44
]. Focus groups began with academic and peer researchers introducing ourselves and outlining our connections to the ‘researcher’, ‘LGBTIQA+’ and ‘disability’ identities. Participants introduced themselves in many different ways. Some disclosed about their experience of disability in detail, making brief mention of their sexual orientation, while others focussed on their gender or sexual identity, preferred pronouns, cultural identity and/or history of difficulties in accessing support [35
Participants commented frequently on how having multiple identities means having to ‘come out’ many times, in different ways, in many different contexts. As one participant noted:
We don’t come out once in our life; most of us come out every day, and I have to keep doing that around my sexuality, but also around my disability. My disability is very non-visual; it’s in here [points to head], and it’s the things that I can do and the things that I can’t do… but it is difficult, in a workplace, to cover both of these [identities] at once.
A number of participants expressed fears and concerns about not having their identities understood or respected when navigating and engaging with services and individual providers, and again described the stress of trying to ascertain whether it was safe to disclose.
I have to go back to my gynaecologist soon, because it’s time for my next check, since the last one five years ago, and since then, I’ve explored my gender, and come out, and things like that; so I’m sort of wondering if there’s any point in disclosing my trans identity, or if I should just closet myself. Because is there any point in doing the work to educate them? Because it’s almost certain they won’t know already. Or is that energy better spent on just getting through the whole experience?
This was a concern for participants when navigating specific disability services, where they were unsure if it was safe to discuss their sex, gender, sexuality or intersex status. Participants also described uncertainty and tension around trying to access LGBTIQA+ services or events.
So if I want to get autistic services, I don’t really talk about sexuality; if I want to go into queer spaces, I can’t really talk about disability and access… there’s not an understanding; there’s not a whole lot of cross-education.
For LGBTIQA+ people with disability, these concerns mean having to constantly decide what information to prioritise or share with services, weighing decisions about what they think a service provider needs to know about their identities against the potential physical and emotional toll of having to explain themselves.
A disproportionate number of disabled people are on Newstart, rather than DSP [Disability Support Pension], unfortunately; and that can be a really difficult landscape to navigate, as both a queer person, and a trans person, and all that kind of stuff, as well as a disabled person; because I have to disclose all those parts of identity as well as my access needs, police that they’re being met, police that I’m being gendered correctly, all of that kind of jazz; which makes every other part of life more difficult.
Newstart is an income support payment for jobseekers in Australia. The Disability Support Pension (DSP) is a significantly higher payment. Not all people with disability will receive the DSP, partly because it is materially more difficult to access, practically and in its conditions. Participants noted issues with the DSP, for example, that it is means tested, meaning that if they partner with someone of a certain income they risk losing this payment and thus the critical independence it provides.
A common discussion among participants was the concept of ‘masking’ and ‘closeting’ identities when accessing services. They noted that just as LGBTIQA+ people with disability have to come out and/or explain themselves in multiple ways, they may also need to disguise or keep hidden different parts of themselves in different contexts. At times this meant having to strategically decide which parts of themselves to reveal, and the stress of decision-making. When trying to access health and other services in order to receive appropriate care, participants thought being able to describe information about their LGBTIQA+ identity and disability was relevant to receiving appropriate care, but did not know whether it would be safe to do so.
I think often it’s easier to be one or the other, and you don’t often get to be both. You either get to be the person with a disability, and you don’t always disclose, as others have said; or you get to be the gay person, but you don’t get your disability side of you actually acknowledged, or sort of… I don’t know. I think you often get split between the two, or between however many there are.
In addition to concerns about their identities not being recognised and needs not being understood, participants also expressed fear of being discriminated against when accessing and engaging with services, and of providers not knowing what to do to support them appropriately. For some, fear of discrimination or receiving poor quality care in health services resulted in them avoiding or delaying engagement in a variety of settings.
I want to start study soon… but I’m afraid for two reasons, because I don’t know what level of support I’ll have with access needs, and things like that, because they’re not very explicit about that before you enrol. And I’m also worried about if my trans identity will be accepted.
Some participants emphasised the importance of supporting their capacity to decide when and how to not
disclose parts of their identity. In the case of some disability groups, such as people with cognitive impairment, agency in disclosure of sexual identity is often incorrectly taken for a lack of understanding or knowledge [46
]. Participants emphasised how LGBTIQA+ people with disability had fewer options depending on the intersection of minority identities they belonged to, and/or the kinds of health or access needs they experienced.
Whenever I need to get medical care, or therapy, or anything like that. You need to sort of pick which part is most important immediately, because there’s almost never any option that covers all the bases at once.
Participants also described the additional burden and stress associated with having to determine whether a service can meet their access needs and advocating to have these needs met, which often meant incurring the additional financial costs of receiving access supports. At times the burden of coming out repeatedly was the result of individual service providers not respecting or appropriately responding to particular needs, or of systems not having the capabilities to accurately record information, such as non-binary genders and pronouns. As one participant described:
I recently tried coming out to my disability employment services provider, because they have really not known a lot, so I think they’ve tried to take note of what I said, but there is no place on their system where they can note my pronouns, or my actual gender, or my preferred name - my actual name that I use, rather than my birth name.
Services labelling themselves as ‘LGBTIQA+ friendly’ was seen as useful, but participants described wariness about whether this was a marketing ploy with little substance. In particular, many participants described experiencing negative treatment at such services.
I still have anxiety about sharing my sexuality, and I live in a sexually and gender diverse household; I’m the carer of someone else with disability, and when I look for services, I actively search to see if they are LGBTI friendly; and even when I do find that they say they are, if they treat you really badly or discriminate based on the disability, I don’t then feel comfortable sharing the other part.
This sentiment was shared by many participants, suggesting it can be difficult to present an integrated self via a set of identities and instead feeling forced to present only certain aspects of oneself in particular settings. This is important as the experiences of LGBTIQA+ people with disability shows how ‘access’ looks different for different people; pointing to the need for a holistic and comprehensive understanding of how access needs can be conceptualised and met [47
]. As one participant put it:
Knowing your accessibility needs can be really difficult sometimes, when disability is defined by what makes us frustrating for other people, as opposed to what our experiences of it actually are.
4.2. Community Services and Supports
‘Community’ is a somewhat disingenuous term as it implies a singular ‘disability community’ or ‘queer community.’ Rather, ‘community’ serves as shorthand for people who have in common particular identities. As with all groups of people, while they might share some experiences and values, there are many differences as well. In this context ‘community’ was identified variously connected to LGBTIQA+ and disability identities.
Many participants described experiencing mistreatment, not only via services, but also within their own communities. This included experiences of homophobia, biphobia and transphobia within disability communities, and ableism and ignorance in LGBTIQA+ communities. Participants described the despair that accompanied feeling like it was necessary to erase aspects of their identities across several communities. For many, this left them feeling excluded, marginalised and unsafe within their own communities, and this had a detrimental impact on their ability to participate in accessing health and other services they might want or need.
I think there’s so many social barriers, in terms of people’s ableism and negative attitudes around disability, within the broader community, but also within the LGBTI community…there’s so many assumptions about people with disabilities, around our sexuality, our desire. Being viewed as not desirable or less than other people. You know, trying to find a relationship, but also trying to find a pash on a Saturday night is really hard.
Failing to address these experiences of discrimination within both LGBTIQA+ and disability communities makes people who exist within both these worlds at risk of further isolation. LGBTIQA+ people with disability are often expected to either: tolerate these kinds of fragmentations of their identities in order to connect, or to take on the burden and responsibility of addressing these marginalisations and exclusions themselves, which they are actively experiencing. Neither of these ‘choices’ recognise the systemic issues of in/access as oppressive and instead continue to focus on individuals’ ability to be ‘included.’
This was a key point discussed in the focus groups, relating to difficulties in access and inclusion within community spaces, where competing accessibility needs or the values and aspirations of particular groups could clash. As one participant reported,
Just because you’re disabled doesn’t mean that you’re inclusive to people with all different types of disability, and sometimes little cliques can form.
Participants stressed the importance of understanding the breadth and variety of access needs, emphasising that ‘one access size’ does not fit all people. In our own experience of creating accessible spaces for the focus groups, we experienced some of these clashes. For example, we needed an environment which worked for people with sensory sensitivity (requiring dim lighting) and people with vision impairment (requiring bright lighting) [35
]. Participants also drew attention to the complexity of psychosocial disability, where access needs could be harder to describe and less likely to be understood. Many participants lamented that terms such as ‘accessibility’ and ‘inclusion’ could be stickered onto events, organisations or services without being relevant to them. Participants described the implications of misusing of these terms:
‘Inclusive’ really isn’t inclusive yet. So a lot of places are being advertised as an inclusive event, yet they’ve not actually done any research in regards to finding out about disabilities and what inclusive changes need to happen for people with disabilities to access those services. So yeah, it kind of… it raises the question of going, “Okay, well, all of these things are being promoted as accessible for us, yet they’re not.”
In many cases participants saw this as evidence of a lack of understanding or consultation with people with disability. Participants acknowledged that efforts had been made by some LGBTIQA+ event organisers to improve some aspects of accessibility but highlighted the importance of ensuring that more community events and spaces are accessible to more people, taking into account physical, financial and social access barriers. In particular, they spoke of the need for organisers of LGBTIQA+ events to plan for and provide access for people with disability, make clear what those accessibility adjustments are, and the positive impact of doing so.
I think actually the best example of accessibility within the LGBTI community I think has to go to [LGBTIQA+ cultural festival] Midsumma, because they are proactively starting to make that information available in events and booklets. So when you open up the booklet, they’re starting to include wheelchair access, they’ve got Auslan there, breakout spaces, and things like that.
A prominent theme was the role of community in promoting a sense of belonging and acceptance, and the importance of peer connections for instilling pride and counteracting shame. For example, one participant described the positive impact of discovering their interpreter was also part of the queer community:
I got the vibes from them that they’re one of us, and I was sort of thinking, how long have they been part of the LBGTI community, and they said that they’re gay, so we had that camaraderie, and we were able to talk to each other about it, and I could add my sass, and I could hear him using that sort of language when he was interpreting for me, and I really loved that.
This experience of connection, solidarity and belonging directly influenced participants’ feelings about, and capacity to, seek support from services. Online communities were seen as particularly important for LGBTIQA+ people with disability, where they were able to find community-led, accessible information, especially for people who may not be able to connect in physical spaces. As one participant described:
First time I ever saw another LGBTI person with disability was actually on [dating app] Grindr. I’d never actually met anyone. I never actually knew there were other people out there; and when it started to show up on Grindr, that was when I was like, “Wow, there are actually other people out there.” Which is a really powerful thing.
Participants also recounted how opportunities to connect offline with peers can be limited for LGBTIQA+ people with disability and that this is compounded for people already experiencing social isolation, especially those with chronic mental illness, complex communication, or who live in regional and rural areas. As one participant put it:
You get to meet many people in the Deaf world, but out in regional areas, you’re the only one, essentially, so being a woman, living out there and being a lesbian, there’s not a lot of options for me out there. It’s very limiting.
Online spaces were also described in terms of providing people with security over what and how much they reveal about their identities. This provided a way to practice tailoring the kinds of information they felt comfortable sharing, and gaining acceptance through being open about parts of themselves that were positively received. This instilled a sense of pride and purpose that could translate into a stronger position of advocating for their needs and/or attempting to access services, as well as finding support in how to go about doing so.
I find a lot of Facebook groups really helpful. There are really specific identity-based Facebook groups, and also ones that are specifically tailored to different political leanings and things like that, so you can feel accepted in multiple facets of identity at once. Those are all our own voices, community-based spaces - they’re not set up by other people. It’s all ourselves.
Participants celebrated the chance to explore their pride in identity through online connections. Some participants reported feeling a sense of agency in making choices about which identities to make public or to express in each setting. Key to participants was the possibility of expressing agency as decision makers, where taking control of when, how, what and with whom to share was balanced with questions of safety. For some, a developing comfort and pride with their own identity made disclosure more possible.
My experience, when I was younger, I wasn’t sure about my identity, I was really confused. I didn’t know – I just pushed that side of myself down. I didn’t want people to tease me, I didn’t like that. I put a mask on, straight away. I wasn’t comfortable with who I was. But later, when I was older, I saw in my Deaf community that I was accepted. You know, why am I so worried about it. Why was I pretending to be straight?
Participants discussed the role of building resilience and capacities within communities, which could also act as an important source of relevant, tailored information, including about specific disability and LGBTIQA+ identities, navigating difficult healthcare or bureaucratic systems, and which healthcare providers or services had been useful to others. Yet participants also emphasised that they felt they were made responsible for their own access needs, both in health services and community events and organisations, and that this is inherently discriminating. This was also repeatedly described as exhausting, and participants called for services and organisations to reach out, beyond simply recognising that LGBTIQA+ people with disability exist, towards actively supporting their needs and capacities to participate.