Ethical guidance on studying trans health, for researchers and ethics boards

I recently co-authored an article on research ethics for the journal Transgender Health. It’s based on an extensive review of literature on the topic, and written by an international team of scholars and health practitioners with extensive experience of conducting research in this field.

Transgender Health is an open access journal, so the article is freely available for anyone to read and share.

I’ve copied the abstract out below: please click on the title for full access.


Guidance and Ethical Considerations for Undertaking Transgender Health Research and Institutional Review Boards Adjudicating this Research

The purpose of this review is to create a set of provisional criteria for Institutional Review Boards (IRBs) to refer to when assessing the ethical orientation of transgender health research proposals. We began by searching for literature on this topic using databases and the reference lists of key articles, resulting in a preliminary set of criteria. We then collaborated to develop the following nine guidelines:

(1) Whenever possible, research should be grounded, from inception to dissemination, in a meaningful collaboration with community stakeholders;

(2) language and framing of transgender health research should be non-stigmatizing;

(3) research should be disseminated back to the community;

(4) the diversity of the transgender and gender diverse (TGGD) community should be accurately reflected and sensitively reflected;

(5) informed consent must be meaningful, without coercion or undue influence;

(6) the protection of participant confidentiality should be paramount;

(7) alternative consent procedures should be considered for TGGD minors;

(8) research should align with current professional standards that refute conversion, reorientation, or reparative therapy; and

(9) IRBs should guard against the temptation to avoid, limit, or delay research on this subject.

Trans health in Canada: reflections and resources from CPATH

At the end of October I attended the CPATH 2017 (Canadian Professional Association for Transgender Health) conference in Vancouver. It was a fascinating event from which I learned a great deal. I’m keen to share some of my thoughts and experiences with others, as I feel there is a great deal that trans health researchers, practitioners and activists can learn from the progress that’s been made in Canada, as well as the limitations of that progress.

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Poster: “In Our Dream B.C….”, by Drawing Change. Based on Trans Care BC consultation with gender creative, trans, and two-spirit youth and their families..

In this post, I reflect briefly on my impressions of the conference, and link to Twitter threads I wrote during various sessions. You can also read my initial thoughts on the conference here.


CPATH took a broadly holistic approach to trans health

Over 300 people took part in the three-day CPATH 2017 conference and two-day pre-conference. In attendance were GPs, nurses, endocrinologists, psychologists, psychiatrists, therapists and counsellors, social workers, healthcare administrators, peer and parent support group facilitators, academic researchers, lawyers, politicians, and various trans campaigners.

CPATH 2017 treated “health” as a social phenomenon as well as a purely embodied matter, and this made for some very productive conversations. For example, numerous sessions explored how trans healthcare might best be provided in the context of primary health. Gender identity services are frequently provided by GPs with support from external specialists, a model of care that is currently under consideration for England. In some Canadian Provinces, organisations such as Trans Care BC help to connect providers in primary care to relevant specialists, and support trans people in obtaining interventions such as hormone therapy and surgeries.

This approach enables continuity of care in a local context, with family doctors enabled to provide trans-specific care for their patients alongside everyday services. It reduces barriers to access such as waiting times and the necessity of long-distance travel. It also enables GPs to help their trans patients access a wider range of specialist services: for instance, trans people with mental health issues might benefit from a referral to a peer support group as well as or instead of formal therapy (depending on patient desire and need). Many practitioners provide services on the basis of informed consent, rather than using mental health assessments as gatekeeping measures. It was heartening to see generalist and specialist healthcare professionals, social workers, trans activists and others engaged in open discussions about how best to manage care through this kind of system.

I was also particularly struck (and moved) by a session entitled Trans and Two Spirit Youth Speak Back! The 40 or so adults in attendance – mostly healthcare professionals or researchers of one stripe or another – were asked not to speak at all during this workshop. We were instead invited to listen to the stories and experiences of trans and two-spirit young people, who sat dotted around the room and answered pre-prepared questions delivered by a youth group facilitator. This session structurally prioritised the voices of young trans people who are so often silenced, and also offered an opportunity for us to hear how the healthcare needs and challenges faced by these individuals were shaped by their cultural heritage, family life, schools and peer groups.


CPATH took intersectional trans voices seriously

Trans and Two Spirit Youth Speak Back! was just one example of how trans voices were frequently centred at CPATH 2017. As an attendee from the UK, I was very impressed by this! Our trans healthcare conferences, seminars and workshops tend to be organised by and for community groups, researchers or healthcare providers, with relatively little overlap between attendees at these events. Very few practitioners are (openly) trans, meaning that trans people tend to talk to one another at community and research events, but are heard less often at healthcare conferences for doctors, nurses and mental health specialists. Moreover, the speaker line-ups at all these events tend to overwhelmingly prioritise the most privileged individuals, such as white people and men. The only possible exception is cliniQ’s Trans Health Matters conference, and that event too feels like it’s taking the first steps towards something better.

During the opening plenary of the CPATH conference proper, we were informed that around one third of speakers at the event were trans, and around a tenth were Indigenous (i.e. of First Nations heritage). I’m not sure how many people of colour were represented at the event more generally, but the all-white panels which are a norm at UK events seemed few and far between.

Importantly, the trans women, trans men, non-binary and two-spirit platformed as speakers and workshop facilitators were usually also professionals. We weren’t simply present at CPATH to represent a “patient perspective”: rather, we were the experts. This reflects the hard work of individuals in pursuing a career, and the collective work of CPATH in supporting trans professionals; it also reflects the actions of local providers in various parts of Canada who have made an active effort to employ trans people, or secure funding for partnerships with trans-led organisations.

In my previous post I noted that the opening plenary of the conference proper centred Indigenous voices. This included a formal welcome from Musqueam Elder Jewel Thomas, and talks by trans and two-spirit Indigenous educators from different parts of North America. I was happy to see that the plenary session on the second day of the conference continued to centre the voices of individuals who tend to be marginalised within even trans spaces. Two-spirit physician Dr James Makokis and Latina trans activist Betty Iglesias – who discussed issues faced by trans sex workers and migrants – were platformed alongside an Member of Parliament from Canada’s ruling Liberal Party, resulting in a thoughtful and challenging debate.


CPATH (and the rest of us) still have a lot of work still to do

I left CPATH with a very positive impression, but Canada is by no means the promised land for trans health. Professionals and patient representatives alike frequently discussed the challenges they faced in providing gender-affirming services. Transphobia and cisgenderism are still very much prevalent within healthcare provision and legal frameworks, particularly outside of urban areas: there is therefore a great need for better education among trainees and further reform of laws and guidelines. Limited funding and different approaches across the country’s Provinces and Territories also mean that not everyone has the same access to treatment, and waiting lists persist for publicly-funded care. These are challenges that exist across the world, and may benefit from greater international collaboration and strategy-sharing.

At the end of the first day of the conference proper, there was a reception specifically for trans people attending the conference. I later reflected on the experience of attending this reception in conversation with a genderqueer colleague; both of us felt ourselves relaxing enormously upon entering the trans-only space. For all the positives of CPATH, it was a huge relief to step away from cisgenderist expectations and microaggressions that quietly persisted throughout the conference proper. These included a range of unspoken ideas about how we should dress, act, and talk “professionally”, limitations on our ability to name transphobia within healthcare settings without fearing repercussions, and the occasional terrible intervention from self-righteous cis professionals.

As ever, facing down these challenges is hardest for the most marginalised trans people, including (for instance) disabled individuals, sex workers, migrants, and people of colour. I was aware that while CPATH 2017 took a broadly intersectional approach, instances of ableism, racism, sexism and so on persisted: and this could take the form of unexamined prejudices on the part of more privileged trans people too. Moreover, white people were still heavily overrepresented among conference attendees; a phenomenon that was particularly noticeable at an event held in a city as diverse as Vancouver.

What I’m taking from this is a reminder that equality work is never “done”; rather, it is something that we should strive to always “do”. We should aim constant improvement in our relations to one another rather than assuming that solidarity and equality are things that we can simply achieve. It is in this spirit that I’ve attempted to use my own privilege as an academic to bring back lessons from Canada for the UK and beyond.

So, I’ll end this post with a serious of links to Twitter threads from the event. I livetweeted extensively from CPATH 2017, sharing summaries of the numerous talks and workshops I attended. This is by no means a comprehensive summary of any of the sessions I was at, let alone the wider conference (as numerous parallel sessions took place simultaneously). However, I hope the ideas and approaches will be as useful and interesting to you as they are to me.


Pre-conference (training) Twitter threads

Day 1:

Introduction to Gender-Affirming Practice

Pre-puberty/Puberty: Addressing On-coming Puberty

 

Day 2:

Adolescence: Moving Forward With Gender-affirming Care for Youth

Cross Country Health Clinic Practice Panel: Models of Care and Clinical Practices

 

Conference Twitter threads

Day 1:

Plenary: Centering Indigeneity and Decolonizing Gender

Interpersonal Communication Needs of Transgender People

Ethical Guidelines for Research Involving Trans People: Launch of a New Resource

Investigating the Medicalization of Trans Identity

Primary Care Approaches to Caring for Trans Youth

 

Day 2:

Plenary: Fostering Safety and Inclusion in Service Provision, Systems and Sectors

Non-binary Inclusion in Systems of Care

Trans Data Collection and Privacy

Legal, Ethical, Clinical Challenges: Youth Consent to Gender Affirming Medical Care

 

Day 3:

Pregnancy and Birth

Plenary: Supporting Older Trans People

 

 

CPATH: diversity, inclusion and decolonisation in trans health

I’m currently attending the CPATH (Canadian Professional Association for Transgender Health) conference in Vancouver. It’s a fascinating event which I’m hoping to write about more in the coming days. I’ll also be livetweeting whenever possible.

The first two days of the event are a “pre-conference” training session aimed largely at healthcare professionals, followed by a more standard three-day conference over the weekend. I’m fortunate enough to be attending the whole thing, funded through the ESRC-sponsored Trans Pregnancy project. I’m here to learn about how gender-affirming care is being practiced in North America, and to connect with people working in reproductive health and in supporting transition.

What’s really struck me so far is how much more intersectional and inclusive of actual trans people this event is when compared to professional events in Western Europe, particularly last year’s WPATH conference.

I was struck at the how the first pre-conference session I attended – billed as an introduction to gender-affirming care – had questions of diversity, power, and consent absolutely embedded into the presentations. Attendees were encouraged to reflect critically on their own privilege and social position, and that of key writers and trend-setters in the field. We discussed how social determinants of health (such as wealth, education, citizenship etc) play a huge role in determining inequalities within trans populations as well as between trans people and the cis majority.

These are pretty standard topics within sociology, but even so I felt the session was very well-presented and I learned a lot from the informative but open and deeply self-aware approach taken by the two presenters, Gwen Haworth and Jenn Matsui De Roo. It was immensely refreshing to see this kind of conversation take place in an event attended largely by healthcare providers. Too often, I feel clinical providers and researchers in the UK find themselves at loggerheads with trans patients. Often this may be because they haven’t thought to take a step back and consider the cultural context of their patient’s life and the systemic issues that this person might have encountered, let alone the deeply unequal power dynamic of the clinical encounter.

It was also really important for me as a non-clinician to take the time to listen to the stories and experiences of healthcare professionals, and learn more about the energy and care they put into the vital work that they do. I fear too many sociologists looking into issues around healthcare don’t actually attend medical conferences, and as such miss out from directly hearing about professional views and experiences.

I was also delighted to see that the space is pretty trans-friendly. People are generally sensitive around language, there are gender-neutral toilet blocks, pronoun stickers, and there’s also a “safer space” quiet room. At the WPATH conference last year, a number of trans attendees were attempting to make all of these things happen through forms of quiet guerilla disruption, for instance through putting holographic stickers on the toilets that switched between “male” and “female” images. At CPATH, trans language, trans culture and trans needs feel like part of the fabric of the event.

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My CPATH 2017 Conference name badge.
Under my name is a sticker reading “preferred pronoun: she/her”.

Finally, it’s good to see that there’s a serious decolonial agenda at CPATH. The conference booklet acknowledges that Vancouver is built on unceded lands; there are numerous sessions led by indigenous practitioners, researchers and activists; indigenous perspectives and issues are regularly discussed by non-indigenous attendees; and the introductory plenary for the conference proper on Friday will feature an opening speech and talks from indigenous activists and healthcare providers.

Of course, while all of this looks good for CPATH, the progressive appearance of the conference can hide the struggles that make real inclusion and recognition possible. I’ve heard that the opening plenary was the outcome of a struggle over indigenous representation after a number of papers were rejected. So, however good CPATH looks to me as a (white, British) outsider, it’s important to acknowledge the ongoing, silent (silenced) work that so often takes place behind the scenes to make this happen.

Report: “Certifying Equality? A critical reflection on Athena SWAN”

Certifying EqualityEarlier this year I organised an event on Athena SWAN and equality accreditation for the Centre for the Study of Women and Gender at the University of Warwick. It was a really great opportunity for attendees from a range of HE institutions to reflect on the benefits and limitations of equality accreditation schemes, and share thoughts on our experiences of Athena SWAN.

I’ve now completed a report on the event, which I hope will be helpful for galvanising discussions in universities that participate in the Athena SWAN charter mark.

You can download the report here.

It includes reflections and insights from the Certifying Equality event, including:

  • Background to Athena SWAN
  • Athena SWAN as a catalyst for change
  • The contradictions of equality accreditation
  • Proposals for change
  • Presentation summaries

If you find this document helpful and interesting, please do help distribute it by sharing with your colleagues!

 

 

Certifying Equality? A critical perspective on Athena SWAN (17 February)

certifying-equality-posterI’m currently part of a team working on an Athena SWAN submission for the Department of Sociology at the University of Warwick.

Many of us are feminist academics. The process has got us thinking both about how equality accreditation mechanisms such as Athena SWAN can create space for new ways of thinking and tackling sexism, and also about what can go “missing” or get “lost” in such processes. For example, there isn’t much space for an interrogation of intersecting inequalities in Athena SWAN (or Race Equality Mark) submissions.

We’ve therefore decided to organise an event to think about and discuss some of these issues. It will be taking place on Friday 17th February in the Wolfson Research Exchange, University of Warwick Library.

Further details and a registration form can be found here.

I have seen the future of feminism, and it is beautiful

Yesterday’s social media furore over a dodgy letter to the Observer left me questioning my place within the women’s movement for the umpteenth time. However, within hours I was powerfully reminded that those who advocate an exclusive feminism are less influential and important than they might like to think.

Last night I joined a room of people committed to building a feminism that is compassionate, reflexive, inclusive of all women and sensitive to our different experiences.

Last night I found myself in a room of brown, black and white faces; gay, bi and straight; cis and trans; working class and middle class; disabled and abled. Last night I heard a teenage Muslim woman speak out about the importance of representing all faiths in activism after a question from a Jewish woman in the audience. Last night I heard from a white middle-class straight woman who has turned up to learn with an open mind. Last night I heard cis women talk about about trans rights, and felt that my identity and experience as a woman was simply not in question.

I had been invited to contribute to a panel discussion at the University of Bristol Students’ Union (UBU). Entitled How do we make the Women’s Movement intersectional?, the panel was was of UBU’s “Festival of Liberation“, which also includes events looking at the challenges faced by LGBT people, disabled people, and people of colour. I was honoured to share a panel with three truly awesome women: Susuana Antubam and Sammi Whitaker of the NUS Women’s Campaign, and Fahma Mohamed of Integrate Bristol.

Panellists at UBU's intersectional feminist event
Last night was promising and encouraging and heartwarming, and was not unusual in being so. I have seen similar scenes repeated across the country over the last few years at talks, workshops, protests and riot grrrl gigs.

This is the new feminism. A feminism that is discarding the model of monolithic female oppression and in its place building a movement around diversity and inclusion. A feminism that seeks to base both theory and action upon what different groups of women have to say about their lives and experiences, rather than imposing a top-down model of liberation drawn from academic theory. A feminism that sees cis and straight women take responsibility for supporting the work of their trans and queer sisters, white women take responsibility for supporting the work of their sisters of colour, abled women take responsibiity for supporting the work of their disabled sisters and so on.

Last night we talked about the importance of intersectionality as feminist praxis: of putting ideas into action. We talked about the importance of education: of sharing the knowledge and tools necessary for women’s liberation with people of all genders. We talked about the importance of representation: of working to ensure that women of all backgrounds feel welcome and able to attend feminist events through the use of accessible venues, ensuring diversity within organising teams and (where relevant) speakers/acts, and thinking about the language we use. We talked about the benefits of building groups around intersectional identities (such as black womanhood); groups that can then work alongside other bodies of people with a broader remit, feeding in ideas and holding them to account.

We talked about calling people out and challenging oppressive behaviour both within wider society and within the feminist movement. We also talked about being kind and prepared to forgive, and allowing people space to learn and grow. We talked about how everyone will make mistakes, because intersectional feminism is a constant experience of doing and being, rather than a closed process where you jump through a series of hoops and then become a Good Feminist who is capable of always passing judgement upon others.

We talked about our experiences of activism. Fahma talked about giving a piece of her mind to a nervous Michael Gove, resulting in a letter to every school in the country about FGM. Sammi talked about productive conversations with working class male friends, and building liberation into the very fabric of Anglia Ruskin’s fledgling Students’ Union. Susuana talked about her work on addressing lad culture as a gendered, racialised and classist phenomenon. I talked about my contributions to trans and non-binary inclusion within the NUS Women’s Campaign, and how we seek a diverse range of performers for Revolt, Coventry’s feminist punk night. We heard stories and ideas and questions from the audience, and I reflected on how we were not “experts” with a monopoly on solutions, but just one part of a wider movement.

These are just some of the things that we talked about.

So why have I been led to question my place within the women’s movement?

Because I see Julie Bindel referring to other feminists as “stupid little bellends” whilst misgendering trans women, arguing that bisexuals do not experience oppression, and stating that Muslim women who wear religious dress are necessarily oppressed. Because I see Rupert Read suggesting that trans women should not be allowed to use public toilets. Because I see Beatrix Campbell repeating and defending these ideas.

When I read things like this, I am repelled by a feminism that is harsh, bitter and exclusionary.

When feminists gaslight me by claiming repeatedly that the individuals who wrote these articles are not transphobic I am saddened and confused.

When I hear about feminists disrupting conversations at events such as AFem in order to promote an agenda that excludes trans people and sex workers, I am disappointed and worried.

When I see exclusionary events like Radfem 2013 and Femifest 2014 promoted within feminist spaces and supported by organisations like Women’s Aid and Reclaim The Night London I am alarmed and concerned.

When I see feminist women and men – including both public figures as well as personal friends and acquaintances – sign a misleading letter that condemns attempts to debate and contest the above, I wonder how voices of those who work for an inclusive and diverse feminism can possibly stand against a “letter mob” representing the discursive might of the liberal Establishment.

The stakes are high. Too many of my friends have considered suicide. Too many of my friends have died. When I talk to my trans friends and fellow activists, I hear about fragile mental health, doctors and shopkeepers refusing to provide services, threats of violence and attacks in the street. All of these things are fuelled by the dehumanisation of trans people, the idea that we require intervention to save us from the misguided path of transition, the implication that we do not deserve to exist within public spaces. These discourses are perpetuated by feminists and defended by liberals in the name of “free speech”.

I don’t believe in historical inevitability and don’t buy into progression narratives. I had a debate about trans-exclusive feminisms with Jack Halberstam recently. Jack echoed my PhD supervisor in arguing that trans-exclusive feminisms are outdated and irrelevant, long-dismissed within the academic world. But the academic world is often divorced from the reality of the feminist movement on the ground. In this reality, exclusive feminisms continue to fester.

In spite of all of this, last night reminded me of the power and appeal of the new, intersectional feminism. It is this feminism that is popular amongst young people who are more interested in working together than apart, and veteran activists with the humility to share their ideas and wisdom with newcomers on an equal footing.

This feminism requires work and nurture, but – as I argued last night – this does not need to be an entirely arduous task. Working together across our differences and ensuring that more people feel welcome and included makes us stronger. Learning new things from others can be interesting and exciting. Having the strength to learn from our mistakes solidifies friendships and alliances. Discovering a more diverse range of feminist histories, activisms and performances can be fun and empowering.

The new feminism is beautiful. Let’s keep building.

(Guest Post) #TransStonewall: Uncovering White Trans Laziness

This post was written by Jade Fernandez, who has given me permission to cross-post.


It’s true, I’m a defector. I’m turned in my Racial Badge for a slightly-less-radical badge that reads ‘Unapologetic Stonewall Sympathiser’, and I’ve torn up my Radical Trans ID that I specifically use to get into Radical Trans Events.

I took part in the #TransStonewall meeting, and I liked it. Sue me.

What was refreshing was, to put it lightly, the lack of trans wankery. What, I hear you ask, is trans wankery? It’s the inter-community shitstorm that bubbles up every time we try and organise something even a little bit outside of our comfort zones. Let’s face it, trans people trying to organise something of this magnitude with Stonewall would be like dumping cats into a bag and giving it a kick. With CEO Ruth Hunt’s guidance, oratory skills, and calm professional aura, the meeting was free from drama, ended on time, and we reached some clear, profound points for moving forward at the end. Had a bunch of trans people organised it solely, we would have been talking about the past 25 years of grievances for 25 hours and I would have burst into tears.

There were issues with diversity – of course, there will always be diversity issues within any group of people with one common experience. Intersectionality is a buzzword white trans people like to throw around to impress their equally white mates. Intersectionality, white trans people think, means complaining that no or limited amounts of trans people of colour are present at a meeting, while doing eff-all to improve the situation yourself.

I mean, thank God we’re going to get a separate meeting, because Lord knows that room was a 50-person mayonnaise-fest. It was like walking into a Hellmann’s conference.

But the thing is, the reason why it was particularly creamy as fuck is neither solely the responsibility of trans people, ‘The Trans Community’, or Stonewall. We can’t point fingers at Stonewall while ignoring the fact that white trans people dominate every conversation taking place around trans stuff.

White trans people – lend me your ears: you have a duty of care to make sure trans people of colour are included at all times, and you need to signal boost stuff specifically notifying trans people of colour. Tell your friends. Blitz it out to your social media connections and to your ‘real life’ connections. Make it a numero uno priority. If I see you complaining about trans meetings or events being white, and you didn’t lift a finger to even attempt and make trans people of colour feel welcome, then you can shut your mouth and remove your hands from your keyboard. If I see you pointing fingers at events organisers without first pointing the finger at yourself and asking “Hey, could I be any use apart from using my impressively long repertoire of SJ buzzwords to annoy people?”, then politely go far away from me.

I’ve been transitioning since I was 15. I’m now nearly 22. I’m young and there’s been so much white trans people drama in this small island that I already feel like a battle-scarred veteran of some ongoing bullshit.

You see, white trans people are in prime position to invite trans people of colour to events that are going to be organised and facilitated by people who need some extra help. I don’t think anyone at Stonewall knows about our hidden or closed Facebook groups. Who might know about the perfect people to invite who’d be well up for it, and who are also people of colour. But you – you, my dear white friend – know of these secret communities. Or at least know a friend of a bloody friend, come on.

The result of White Trans Laziness? And now, I’m not letting off Stonewall and the organisers, but this article is holding white trans people to account. But the result of this was that there were four out of fifty trans people who were people of colour. Two of them were afterthoughts. One of them experienced a pretty upsetting racial microaggression on the day. That’s your stat breakdown.

While the consensus from the people of colour who did attend was that it was positive, it was draining and exhausting to be in a space with a load of white trans activists. Though we didn’t talk a great deal about individual experiences and opinions, you just get dragged down a little bit in that kind of space. It was good that a lot of the discussions highlighted that any of Stonewall’s work has to include trans people of a lot of varying diversities and experiences – something that Ruth agreed on wholeheartedly. But you know, I felt like a token. Actually – I was a token. I was there to bring up the diversity quotient. And you know who made me feel tokenised most of all? That’s right: white trans people who did eff-all in the first place complaining that there weren’t more people of colour there, throwing out comments about ‘diversity’ in a smug way like it’s fashionable to point it out.

We’re not fucking elves. Magical people of colour don’t pop up when you say ‘Wow, we (of course, not meaning ME, because I’m a Good White Person) need to do better!’ If you want to magic us up for your conference or event: 1) Provide a spread. Food does wonders. 2) WORK ON IT. PROACTIVELY.

And actually, that’s what Stonewall is doing. Which is heartening. I hope it’s a good one. And free from inter-trans-people-of-colour-community drama, which is ten billion times more upsetting than the paltry Twitter shit white people could ever come up with (‘But that’s none of my business Kermit.jpg’).

I was going to write about how trans people of colour can work with Stonewall in the first instance, but this turned into a rant about white people – which, you know, is kind of relevant. Because if white trans people don’t start pulling their finger out, if we can’t fix the White Trans Laziness in our own little bubble of a world, then there’s really no point of any sort of unity with Stonewall.