Understanding Trans Health – available to pre-order!

Last month I finished writing my first book, Understanding Trans Health: Discourse, Power and Possibility.

This book reports on the wide-ranging research project I undertook from 2010 to 2017, looking at trans discourses and experiences of healthcare services in the UK. It will be of interest to academics, students, health practitioners and activists working and studying in the field of trans health, and will be published by Policy Press in June 2018.

Understanding Trans Health is available for pre-order it for £21.59 (paperback) or £60.00 (hardback) from the Policy Press website. E-book and Kindle versions will also be available soon. If you work or study at a university or college, it would be really great if you could encourage your library to order in a copy!

If you live in the Americas, you can buy it through University of Chicago Press.

I’ll be writing more about the book as the release date approaches. In the meantime, feast your eyes upon the stunning cover commissioned by Policy Press: an image that reflects continuing inequalities of access, the pain of waiting, and patient experiences of anticipation.

Understanding trans health

In other book news, myself and Igi Moon are still working hard on our co-edited volume, The Emergence of Trans: Essays on Politics, Culture and Everyday Life. We’ve had some really fantastic chapter submissions and I can’t wait to share more about this too in the coming months.

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.

DNF13PxV4AEw4K-.jpg large

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

 

 

New job at the University of Leeds

I’m delighted to announce that I’ve just begun Research Fellowship in the School of Sociology and Social Policy at the University of Leeds. I’ll be working as part of an international team on the ESRC-sponsored projected Pregnant Men: An International Exploration of Trans Male Practices of Reproduction, which is being led by Sally Hines. This study will explore the sociological, health care and policy implications of trans men’s reproductive practices.

Some initial information on the scope and plans for this research are currently available on the project website. I’ll be writing more about the project there (and here!) as it progresses.

 

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!

 

 

Forthcoming books!

I’m delighted to announce that I have recently signed not one, but two book contracts. Both books are scheduled for publication in 2018.

My first monograph, provisionally entitled Understanding Trans Health, will be published with Policy Press. This book will draw upon extensive qualitative fieldwork in the UK to examine how trans identities, experiences and healthcare needs are differently understood within community, activist and professional contexts. It shall explore how these different understandings can lead to conflict and mistrust within medical settings, and propose means by which more collaborative relationships might be fostered in the future.

An edited collection, provisionally entitled The Emergence of Trans: Essays on Healthcare, Culture and the Politics of Everyday Life will be published with Routledge. Assembled in collaboration with Dr Iggi Moon and the late Professor Deborah Lynn Steinberg, this book builds on the success of our 2012-2014 seminar series Retheorising Gender and Sexuality: The Emergence of Trans. It will feature international contributions from a range of authors based in different academic disciplines.

Academic books are often unaffordable to lay readers, and unavailable outside of academic libraries. I was therefore really keen that both books would be available in paperback and ebook format as well as the traditional hardback. I’m really pleased to say that both publishers have agreed to print paperback editions in the first run, in recognition of how the book topics are relevant to ordinary people within trans communities.

I’ll be sharing more details on these books as the publication dates approach.

Tickbox diagnosis: can you measure trans feeling?

Nottingham Centre for Transgender Health are currently developing a “Gender Dissonance Severity Scale”.

Gender Dissonance Severity Scale

I can see why some practitioner-researchers might think this is a good idea. The clinical protocols at GICs such as Nottingham currently require trans patients to demonstrate that they can cope with living a “trans” life in order to access “irreversible” treatments such as hormone therapy. At present, this is demonstrated through patients’ adherance to the “Real Life Test”.

“[I]t is the view of many clinicians working in the field – including some of whom are transgender themselves – that living as their experienced gender allows individuals to test their gender identity in the real world before the initiation of potentially irreversible treatments […] transgender people who have poor social and interpersonal skills may be more likely to encounter difficulties when socially transitioning.. […] In order for an individual to be accepted for treatment, they need to socially transition first, which includes not only living as their experienced gender but also changing their name and most legal documents.

(Arcelus et al., 2017)

Wouldn’t it make life easier for clinicians though, if they could also ascertain whether or not their patients feel sufficiently trans?

Enter the Gender Dissonance Severity Scale, which aims to explore “how people feel about their gender, body and quality of life”.


What is being measured?

There are a number of problems with the concept of the Gender Dissonance Severity Scale. The most fundamental is the question of how far you can adequately and consistently measure feeling.

This is a particularly a problem for nebulous concepts such as “gender dysphoria” and “gender dissonance”. That these phenomena exist is not in doubt – many trans and non-binary people across the world can attest to the reality of dysphoric feelings in relation to our bodies and/or gender roles. But these experiences vary greatly from individual to individual, mediated by collective factors such as social context and culture as well as individual differences.

Moreover, dysphoria varies within people as well as between people. A person might feel less dysphoric one day, and more on dysphoric another – depending on factors such as where they’re going, who they’re seeing, how their bodies look, how their bodies feel. A person might feel more dysphoric, for instance, if their facial hair looks particularly thick, if they’re having their period, or if they’re about to attend an appointment at a clinic that assesses their transness. Or they might feel less dysphoric, for instance, if their hair looks great today, if their gender identity feels more aligned with their body, or if they’re about to attend an appointment at a clinic that might grant them access to hormones.

So any attempt to measure gender dysphoria or dissonance may be thwarted by the ever-shifting nature of the thing that is supposed to be measured. One person’s dysphoria can be another person’s euphoria. And a measurement that is “accurate” for a patient on one day might be “inaccurate” on the next.


Who is doing the measuring?

In recruiting participants to assist them in developing the scale, researchers based at Nottingham GIC have argued that the scale will help measure the “effectiveness” of treatment: i.e. how interventions such as hormone therapy and surgeries improve patients’ quality of life. This is no doubt an admirable goal, and will expand upon existing evidence that trans people benefit from having transitioned.

However, there is another proposed use for the scale, as described in the following excerpt from a request for research participants.

From the findings, we hope to develop a new outcome measure that could be used by GP’s to make referrals to transgender health services.

This is a very troubling proposal. It suggests that the Gender Dissonance Severity Scale could perhaps be used as a form of screening mechanism before trans patients are even referred to a gender clinic. Patients could perhaps be refused treatment altogether if they don’t appear to be “dissonant enough” according to the blunt measure of the scale.

Pre-prepared questionnaires are already being used to assess patient distress for those needing to access NHS mental health services through IAPT. Patients are often invited to answer questions on the phone, with access to services depending on how well they meet the questionnaire criteria.

It seems therefore that the Gender Dissonance Severity Scale could potentially be used as an additional layer of gatekeeping, reducing referrals to gender clinics (which are currently seeing a record number of patients) at the expense of those in need of care who happen not to meet the specific criteria of the test.


Subverting measurement

Of course, trans patients have a long-standing approach to dealing with barriers to care: we share information amongst ourselves, learning the “right answers” to give in clinical contexts. This is great for the individual trans person who wants to jump through the necessary hoops in order to access care, but an awful situation for clinical research, where supposedly firm findings might be built upon the decidedly shaky foundation of trans people making up the answers that they think clinicians want to hear.


Towards collaboration?

There is already a lot of mistrust between many trans patients and gender identity specialists. The development of flawed measures such as the Gender Dissonance Severity Scale may only compound this.

While Nottingham GIC does have at least one trans clinician involved in developing their research programme, they have yet to engage more widely with the trans research community. Moreover, few opportunities exist for clinicians to learn about their patients’ desires and interests outside of a context where they have a great deal of power over said patients’ healthcare. But these are issues that can be addressed: through better community outreach, communication, and collaboration, as well as reflexivity and humility on the part of researchers.