Trans healthcare research that matters
There are moments in life when you feel like you’re doing something that’s going to make a difference. Getting the role as Patient and Public Involvement (PPI) Lead for the Integrating Care for Trans Adults (ICTA) Project was one of those moments.
I do a lot of training, consultancy and engagement work on trans issues and at times I feel like that mythical guy pushing the boulder up the hill only for it to roll back down again (I know, I know, his name was Sisyphus). But I can feel change in the air regarding trans healthcare. Bleak as things are, I have hope.
On one side, we have an utterly broken system, with untold suffering and damage being done to trans people because of the over-two-years waits at gender clinics up and down the country, and a catalogue of worries and concerns about some practices when they get there.
On the other side, in spite of the anti-trans backlash we are undoubtedly in the midst of, there is a growing empowerment and knowledge base in our community.
In trans healthcare particularly, we are at a transformative moment. This was the year that the World Health Organisation decided to declassify transness as a mental illness by removing “Gender Identity Disorder” from their International Classification of Diseases 11 and replacing it with the term “Gender Incongruence” classified not under mental health but sexual health (which is still questionable, but better).
Bearing in mind they declassified homosexuality in 1990, trans folk had a long time to wait. (Sadly, asexuals are still waiting).
This declassification marks a shift in the way professionals see trans people. I think it may connect to another heartening change; the way in which trans people are increasingly sought for their knowledge and expertise on trans issues.
I remember years ago a colleague saying he’d been turned down for a research bid because as a trans person he was perceived as “biased”. For far too long the bias of cis people towards trans people has been ignored, the cultural cisgenderism as Natacha Kennedy calls it. Cis people’s perspectives over trans lives have been seen as neutral and objective, while trans people’s self-understanding and accumulated knowledge has been treated as suspect, untrustworthy and too subjective (of course it’s subjective – but then, all knowledge is, and we should be most suspicious of those who claim objectivity).
Last year I was excited by the arrival of two books – Dr Ruth Pearce’s Understanding trans health: Discourse, power and possibility and Dr Ben Vincent’s Transgender Health: A Practitioner’s Guide to Binary and Non-Binary Trans Patient Care. What stands out about these books is that not only do they come from trans researchers, they come from researchers who are embedded in the wider trans community, who are part of an ongoing community conversation and in touch with the experiences of trans people outside of a clinical setting.
Pearce in particular exposed a hard truth about the disconnect between trans people and cis researchers and clinicians: If trans people struggle to trust cis people to do right by them, how are they going to be anything but guarded in their interactions? How, then, can researchers and clinicians arrive at the truth, when there is so much distance (and perhaps mistrust) between them and the people they research?
So how was trans knowledge going to move forward? Well, by the clinics and the researchers having a better relationship with the community they are supposed to be serving. One way for that to happen is if they are embedded in those communities, like Vincent and Pearce.
That’s why the ICTA project is so exciting to me. There’s a lot of non-academic knowledge and experience in the research team alongside the relevant scholarship. There are trans researchers and knowledgeable cis allies. There are partner organisations that have frontline experience and wisdom. There are layers of accountability and consultation throughout the process.
And that’s where the PPI group comes in. Just one of the advisory groups, our job is to make sure the projects stays accountable to the full diversity of our community. It wasn’t enough to recruit the usual panel of white middle class professional trans people. Even though there are only seven of us, we made sure we had a span of ages, backgrounds, ethnicities and experiences. We wanted to ensure we held in mind the voices of trans people who often get forgotten, wanted to ensure as much diversity of experience was represented in our small group as we possibly could.
We also made sure that we had reps from Wales, Scotland and Northern Ireland, and started to learn about the complex healthcare situations beyond England’s borders. This regional knowledge has proved invaluable.
The ICTA research is just at its start, but it promises to inspect trans healthcare in the UK from many angles. It is certainly going to capture diverse trans voices in a multitude of ways and has structures in place to make sure those voices are not drowned out by the assumptions of cis researchers.
Often when I’m doing trans consultation and engagement work I feel dispirited, not listened to. Trans people are invited to comment, but researchers have often made up their minds already; engagement is just a tick-box exercise.
Listening takes a lot of energy because when you’ve got deadlines you don’t want some pesky trans person to send you back to the drawing board. But engagement and consultation when done right, when embedded, when arrived at early enough to be flexible, can help make research hit its mark and have a positive impact on the lives being researched.
This project is going to make a huge difference to trans healthcare, because it listens to trans people. And it’s about time.
Sam Hope is the ICTA PPI Lead and author of Person centred counselling for trans and gender diverse people: A practical guide published by Jessica Kingsley Publishers