gender incongruence

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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.

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WPATH 2016: the activist fringe

I’m currently in Amsterdam for the World Professional Association for Transgender Health (WPATH) biennial symposium. It’ll be the largest such conference that has ever been run, with 800 participants from across the globe. This will hopefully be the first of several posts exploring my experences at the conference (no promises, though!) – and I’m also planning to occasionally livetweet.

WPATH is an international body best known for publishing the Standards of Care, which offer guidance for practitioners supporting patients seeking to transition. The organisation has undergone a great deal of change over the years, reflecting wider shifts in understanding around trans people and our experiences. At present, the organisation’s wide scope incorporates a considerable range of views on how transition should and could be managed.

I’m here partly to present a poster detailing some of my research findings around patient experiences of waiting in the UK. However, as a sociologist with an interest in the evolution and negotiation of discourse and activism around trans health, I’ve been interested to see that at least two fringe conferences have been organised in Amsterdam to coincide with WPATH. I also thought it would be beneficial to share what’s going on with a wider audience – so, here goes!


GATE pre-conference

Global Action for Trans* Equality (GATE) is a loosely-organised international trans rights organisation: a genuinely diverse multinational network of activists with strong representation from the Global South. One of their key priorities has been to campaign for the depathologisation of trans, although members have also been involved in activism around other issues, such as access to care.

Over the past two days GATE held their own conference in Amsterdam to discuss trans health. The event both stood alone as an independent conference, and provided activists with an opportunity to discuss WPATH. I wasn’t able to attend in person, but have heard that a broad consensus was reached on a couple of issues related to the classification of trans in the World Health Organisation’s International Classification of Diseases (ICD).

The current version of the document – ICD-10, published back in 1992 – classifies ‘Gender Identity Disorder’ and ‘Gender Identity Disorder of Childhood’ as mental health issues. These diagnoses are widely used in gender clinics in countries such as the UK (note: these differ from the diagnosis of ‘Gender Dysphoria’ present in the American Psychiatric Association’s DSM). Recent statements from the World Health Organisation indicate that the long-awaited ICD-11 will replace diagnoses of ‘Gender Identity Disorder’ with ‘Gender Incongruence’, and move these to the sexual health section of the document.

Whilst GATE’s long-term goal is depathologisation, at present they have decided to focus upon pushing for this move from classifying trans diagnoses as mental health issues to regarding them as sexual health issues, as a compromise that should ensure continued funding for transition from insurance companies and public health organisations. In addition, they are arguing against the existence of the category ‘Gender Identity Disorder of Childhood’, on the grounds that this is an unnecessary medicalisation of gender diversity in young children, whilst the ‘adult’ category is sufficient to guide medical interventions for adolescents. This perspective feeds into a wider discussion around the category that is also recognised in the WPATH programme, with time set aside for a formal debate.

GATE activists will be attending WPATH to argue these points, and also to advocate more widely for trans-affirming approaches to treatment.


FREE PATHH

FREE PATHH is an event that will take place this Saturday (18th), concurrently with the first day of the WPATH symposium proper (a handful of formal pre-conferences are taking place on Friday). Hosted by Dutch trans activists, it is a free event that anyone can attend. FREE PATHH organisers argue that the high fees for the WPATH event mean that ordinary Dutch trans people are unable to attend this event held in their own country to learn more about their own health. As such, there is little interaction between WPATH and local Dutch trans communities.

The few transgender people who can afford to be present at this important symposium, are exceptions. They can go, because they have to be present for work or because they have enough personal financial means. (FREE PATHH)

As one of those few trans people who can attend the WPATH symposium (in my case, because I was lucky enough to gain a grant in order to do so), I feel this is a really important point. WPATH undoubtedly exists to share information amongst professionals in a formal setting; at the same time, the issues at hand require input from the very people who are directly impacted. With trans people disproportionately likely to be on low incomes, even early career professionals might find themselves effectively frozen out.

The FREE PATHH programme includes talks and workshops in Dutch and English on a range of issues related to trans health, and will be filmed for later disseminaton. At the end of the day, a panel with individuals who have attended both WPATH and FREE PATHH will summarise both events. This should be a valuable opportunity to share insights from both international and Dutch work on trans health, from professional and community perspectives.

You can read the FREE PATHH programme here.