‘I think the website has completely reshaped our community’: The history of the development of a trans-led online health resource

Abstract

Background

The purpose of this paper was to qualitatively document the development of a trans-led online health resource for trans people living in South Australia, and its perceived impact on trans communities.

Methods

A qualitative study was undertaken. Interviews were undertaken in 2024 with five key people involved in the development and maintenance of the resource. Transcribed interview data were analyzed thematically.

Results

Four themes were developed: 1) Countering Misinformation and Monopoly, 2) The Decentralization of Knowledge, 3) A Resource for and by Trans Communities, and 4) Empowering People to Make Healthcare Decisions.

Conclusions

The paper concludes by highlighting the importance of trans-led advocacy and activism in the space of trans healthcare.

Introduction

Trans people have long been at the forefront of the development of health resources for our communities (Pearce, 2018). Whether this be because of a lack of resources available within generalist health services, public prohibitions on health care for trans people, or a desire for trans people to create our own resources, trans people continue to push against restrictions that seek to limit our capacity to make informed decisions about our health care. Yet too often, awareness of trans-led health resources is also limited, whether that be due to lack of awareness among trans communities, cautions about information sharing (for fear of backlash), lack of connection to other trans people or communities, or the geographic dispersal of trans people, which can make raising awareness about trans-led health resources challenging, even within an online context. Documenting ongoing trans histories is thus vital (Stryker, 2017). This paper documents the development of a trans-led online health resource tailored to the South Australian context, however with motivating factors that likely resound with other similar resources developed around the globe.

To a certain extent South Australia has often been considered at the forefront of both legislation and clinical practice for trans people. In terms of the former, for decades South Australia was one of only two Australian States that allowed trans people to change our birth certificates without undertaking surgery. For a period of time in South Australia surgeries for trans women specifically were provided as part of the public healthcare system. Yet despite these positives, there have also been negatives. While previous South Australian laws sought to minimize the legal regulation of gender affirming care, the interpretation of the law took a different approach, one that interpreted the law as restricting gender affirming care to only a very limited number of providers. This resulted in a monopoly that significantly curtailed the rights of trans South Australians to made decisions about our healthcare.

New legislation passed a decade ago in South Australia significantly changed the playing field. First, it made it much easier for trans adults to change our birth certificates. Unfortunately, the new legislation, while creating a space for trans young people to change their birth certificates (which was not previously possible), still requires more steps and oversight than is true for adults. In terms of gender affirming healthcare, the new legislation and accompanying changes to public health directives have challenged the monopoly in terms of healthcare delivery, resulting in trans adults having greater choices. For young people, however, receipt of medical care remains primarily restricted to hospital services. Services for young people are at present under review, due to recognition of the increased demand for services and the accompanying long wait times. For adults, while some surgeries are currently available locally, many surgeries still require interstate or overseas travel. A current review seeks to change this, through the provision of a diversity of surgeries within the public healthcare system.

Methods

The resource

Trans Health SA is a website developed by and for trans people, focused on the South Australian context. The website first began in 2016 as what was known as the ‘SA Practitioner’s List’, which was an informal document circulated in hard copy, including the names of practitioners working in South Australia who were willing and skilled to work with trans people. In many ways the initial list developed in response to the service delivery monopoly at the time, and sought to raise awareness about a greater range of options for trans people.

As the original list expanded and was frequently revised, it became less feasible for the list to be a static entity held by individual people. Looking for a readily accessible place to house the list, a website was registered and developed. While initially a repository for the list, the website has since expanded to include a diversity of information relevant to trans people living in South Australia. Further developments to the website mean that the list is no longer a singular document. Rather, individual healthcare professionals now have individual listings that link to their online materials, and which display their availability and which is entirely searchable.

Researcher positionality

We are two researchers with a diversity of genders, sexualities, and gender modalities. Our academic, personal, and professional experiences encompass working with trans young people, parenting trans young people, and facilitating trans youth groups. The first author has also played a role in providing funds for the costs associated with running the website.

Participants

From the conception of the SA Practitioner’s List, five key people have been involved in the development, maintenance, and expansion of Trans Health SA. These people are widely known within the South Australian community, and work or have worked in areas related to trans health. No demographic information was collected for these five people, given that while they are relatively well known as trans people, further identifying information may increase their level of exposure and vulnerability to negative attention. Participants were given the option to choose pseudonyms, three opted to use their own names.

Procedure

The study reported in this paper was approved by the [removed for review] human research ethics committee. Four of the people were known to the first author. An additional fifth person not known to the first author was also suggested as a key person involved in the website. All five people were emailed an invitation to participate in an interview documenting the history of the website. Participants were provided with a full information sheet about the study detailing what was being asked of them, any potential risks, and the intended use of their data, and were then asked to sign a consent form and to then schedule an interview with the second author. Sample questions include “How did the Trans Health SA website start?” and “What do you think the website has done for trans communities in South Australia?”. Interviews were all conducted via Microsoft Teams, and lasted on average for 45 min (range 31—80 min). Participants were paid a $50AUD honorarium for their time.

Analytic approach

Audio recorded interviews were transcribed by a professional service. Following the approach to reflexive thematic analysis outlined by Clarke and Braun (2021), the first author then read through all five transcripts repeatedly, identifying key topics discussed by the participants. These topics, or codes, were then revisited in the development of themes. While codes indicate broad topics addressed by participants, themes represent higher order conceptualisations of the codes, as developed by the researcher. As this would suggest, theme development is an active process, reflective of the researcher standpoint. The themes reported in this paper speak to why the resource was developed, and the specific historical contexts in which this occurred.

Results

Four themes were developed. These focus on why the website was developed, the core principles of the website, and the perceived benefits of the website for trans people living in South Australia.

Countering misinformation and monopoly

When asked to speak about the initial impetus to develop the SA Practitioner’s List, participants spoke about limitations at the time to the provision of health care for trans people in South Australia. Participants spoke about both misinformation at the time that appeared to limit the pool of available clinicians, and that this misinformation resulted in a monopoly held by a very small number of clinicians. Dan spoke about a ‘closed circle’ that tightly regulated access to healthcare for trans people:

Dan: There was a lot of misinformation in the community about how you go about transitioning. There was a closed circle that most trans people, basically everybody went through at the beginning at least. They formed the impression that you either do that or you can’t transition in South Australia. Over time through the community if you spoke to any trans people, they all thought that was the only option. We called up the Court to find out when people transition legally, which doctors were on their certificates. I had to go behind the scenes, basically talk to the administrative staff at the Courts and find out what had happened before. I found out to my surprise that actually it wasn’t just two people. So a shitload of misinformation. A monopoly.

Dan spoke at length about coming to an understanding of the legal processes involved in the provision of healthcare to trans people in South Australia at the time. While it had been presented as fait accompli that only a small number of clinicians could undertake this work, in reality this was not the case. This realization—that the number of potential clinicians was not as small as had appeared to be the case—provided an initial impetus to seek out and document other clinicians who might be willing to work with trans people. John too shared the perception not only that a monopoly existed, but that it appeared to have been actively promoted:

John: People were hitting brick walls, and hitting barriers to treatment because there was this massive, massive lie that seemed to permeate, not only through our community but through the entire medical professional communities and organisations and agencies all around South Australia, and even interstate. And the lie was that there was only one of two – of these two medical professionals that anyone in South Australia could actually access to transition. And I say it was a lie now, but back then we just thought it was true because we’d got told it by everyone. And I even got chastised by a trans person interstate once by calling it a monopoly. But it was essentially a medical monopoly that they’d built themselves.

Typically, gatekeeping is framed as clinicians regulating trans people’s access to healthcare once they have made an initial appointment (i.e. creating barriers to progressing further with gender affirming care). Yet in this instance it would seem to be the case that gatekeeping also occurred by creating the perception that treatment options were severely limited, with no option but to engage with a very small number of clinicians. Identifying this incorrect information made it possible for the creation of the SA Practitioner’s List.

The decentralisation of knowledge

Once barriers to a broader range of treatment options had been overcome (i.e. recognition that a broader number of clinicians could provide care to trans people), a collective of people led by those interviewed for this study actively sought out clinicians who would work with trans people. Prior to the collation of the first SA Practitioner’s List, information about clinicians was held primarily by the small group of people interviewed for this study, and over time this created emotional labor for the people who held this information. As Sage shared, a lot of time was spent sharing information:

Sage: The information was just sort of there and the same people were making the same contacts. The same professionals would reach out to us. So we’d get contacts from various organisations. We’d get contacts from various community groups or whatever, and health services who are like, “You’re a client of ours and you’re trans, do you know where I might start looking for this?”. This took up a lot of our time, unpaid.

While it was a significant step to be able to expand the scope of clinicians willing and able to work with trans people, there remained only a small number of people who held this information, and who were called upon frequently and repeatedly to share this information. While the people interviewed for this study were passionate advocates, they were also volunteers. Further, and as Zac noted, there was concern about the centralization of information, with the desire that instead information should be more widely accessible:

Zac: There was a few people that were holding a lot of information. And like because of the position I was in, in my professional work, that people often come to me for that information, and I’d happily give it, but it was exhausting having to constantly keep relaying it. For me information shouldn’t be held with individuals, it should be in the mainstream. So the website would give a spot where everything could be shared, so it was easier to access.

As Zac notes, while as an individual he had the scope to share information through his professional role, this was nonetheless exhausting. But the emotional labor appeared not to have necessarily been the key concern, rather the key concern was that information should be shared more widely.

A resource for and by trans communities

When speaking about the housing of the SA Practitioner’s List on a website, all of the participants spoke about the importance of any material being created by trans people. The list, and subsequent website, was not to be a place for clinicians to advertise their work. Rather, it was to be a place where information about clinicians was held, and that this information was carefully vetted. As Sage shared, this type of vetting model draws on histories of trans-led resources:

Sage: I think another strong influence for me was a website called Susan’s Place, which is an American based one. Very trans-femme centric. But it was like one of the only sources. It was one of the old message board style places where we – they had this kind of a thing set up but it was mostly American based where they had this file of all these doctors, and this file of all these professionals. And it’s like, “If only we had that for Adelaide, because it’s such a small town.” So that was a huge guiding moment there.

While Sage was knowledgeable about other similar resources, her interest was also that the website was broadly inclusive and useful to a specific context that had not previously had such a resource (i.e. South Australia). In terms of vetting, participants spoke about the processes through which clinicians came to be listed on the website, and the potential for this to be reviewed at any point in time:

Zac: So if we do get multiple reports about a practitioner, or we do get a report that is quite significant, we’ll just rip them straight off the list. We also advise individuals if they do send something through that is concerning – and it’s on the website as well – to exercise their rights to request a new practitioner or to file a formal complaint.

Adopting the principle of by and for trans people, participants spoke about the processes by which an entry on the website might be reviewed or indeed removed. While clinicians were typically given a right of reply, ultimately control over the listing of clinicians was held by trans community members. Importantly, this was not a process wholly controlled by those who ran the website (even if they ultimately implemented changes to the website). Rather, it was guided by community members and their experiences with clinicians.

Empowering people to make healthcare decisions

When asked about what they believed the website does for trans people in South Australia, participants commonly spoke about the website (and the list housed on it) as giving people choice. A choice about which clinician they would access, and more broadly recognition that choice was indeed possible. As Skye shared, the website demonstrates to trans people that there are clinicians actively willing to work with us:

Skye: I think given how prolific it is and how well-known it is through practitioners I think the website has done a lot. I think it’s given people the ability to see that it’s not just a wasteland out there. It’s not just – there is actually quite a number of practitioners out there that specifically put their hand up and say, “I want to work with you.” So it’s actually quite comforting. And I remember when I first got this list of practitioners, it’s like, “These are people that are actually more than willing to help you.”

John went further in suggesting that the website has changed the landscape of what is possible for trans people in South Australia:

John: I think the website has completely reshaped our community. I don’t know what our community would be like if it wasn’t for that website. It completely changed the foundations of, and the landscape of what was possible for us as a community and individually. I mean there’s people out there that have never had any contact with the trans community face-to-face or online, but they’ve only accessed the site and transitioned, and now they have that choice. They don’t have to beg for information from practitioners who will never share information with them because it’s not in their financial best interests. So, yes, it changed the landscape completely. It means that people have choices.

As John notes, not only has the existence of the website made it possible for trans people to have a choice, but it has also helped to counter the potential for monopoly, and trans people having to seek out information from clinicians who may not necessarily be as focused on choice.

Discussion

In this paper we have documented the history of the development of a trans-led health resource focused on South Australia. The impetus for the initial resource—at the time in paper form—arose from a perceived monopoly on trans healthcare. Once it was established that this monopoly did not actually reflect legislation or health policy, those interviewed were able to develop an initial list of clinicians willing and able to work with trans people. Yet the holding of this list by a limited number of people resulted in emotional labor for these people, and was counter to the principle of information sharing. This led to the development of a website that held both the SA Practitioner’s List and other information developed by and for trans people. As our participants noted, the existence of the website has not only opened up options for trans people, but helped to ensure that trans people can make active choices about their healthcare.

Limitations

We must acknowledge that while we interviewed the five key people involved in the development first of the SA Practitioner’s List, and then the website, many other people were involved in discussions at the time about the perceived monopoly, in providing suggestions for the list, and in providing feedback about the website and its implementation. The next stage of this project has involved interviews with a diversity of people who have utilized the website, so as to ascertain what exactly the website has done for trans communities in South Australia, and how it may continue to be developed as a trans-led resource into the future (Skelton & Riggs, 2024).

Conclusion

As an instance of activism and advocacy, the Trans Health SA website has become a key point of connection for trans people in South Australia, widely known for its accessibility and currency. While South Australia is certainly not the largest state or territory in Australia, it is a testament to those interviewed for this study that such a robust resource exists. Indeed, we would suggest that of all the states and territories in Australia, it is arguably the most robust and detailed resource of its kind. Documenting its development and the principles guiding its implementation constitutes a vital part of sharing ongoing trans histories, both as a model for how advocacy work can be undertaken, and the importance of this work being trans-led.

Funding Statement

Funding for the research reported in this paper was provided by the Fay Fuller Foundation.

Author contributions

DWR and SS designed the project. DWR gained funding for the project. SS gained ethics application for the project and collected all data. DWR drafted the manuscript and SS edited and contributed to the manuscript.

Disclosure statement

The first author provides funds to support in the running of the website Trans Health SA.