Catherine: Hello, and welcome to Speaking of Research a podcast from the South Coast Doctoral Training Partnership. I am Catherine MacDonald, and in this first series of our podcast we’re talking about impact and how researchers can achieve it. We’re recording at the amazing Cumberland Lodge and we’re speaking to doctoral researchers about their research, who might benefit from it, and how they hope it will make a difference. In this episode I’m joined by Katie Munday, from the University of Portsmouth. Can you tell me a bit more about it?

Katie: Yeah thank you so I’ve been doing work the last four or five years on cancer service inequity, mental health services inequity, gender identity healthcare inequity and I see that there’s a lot of issues for trans and autistic people across all these different areas. So, I have a feeling it’s going to be across many more than that.

I appreciate the PhD is supposed to be niche, people might think “Oh trans autistic people are there that many of us?” I’m one of them! Yes, there’s quite a high proportion of autistic people who are also trans or non-binary or generally come under the trans+ umbrella and it’s living within that intersection, as well as other intersections, and what that means for being at access healthcare. As well as healthcare being appropriate, social care being appropriate, and having autonomy and informed choices around health and social care.

So, I’ve kept it quite broad cause I’m taking a participatory action research approach I’m in my year one of PhD but I’ve just got my co-research group together so that’s four other trans autistic adults. I myself am trans and autistic but I don’t want to talk on behalf of my community I want to be able to do it with my community as well and get a few people paid as well. That’s where I am at the moment says yeah super-duper exciting and I can’t tell you much past that because until they tell me what we want to have a look at then I can’t say too much more.

Catherine: Absolutely and do you mind me asking what motivated this research what is it personal experience?

Katie: Yeah, personal experience, and I’ve been working for the last 11 years with neurodivergent and disabled young people – they are a huge part of why I realised in my 30s that I’m autistic and got diagnosed – but also a lot of them are LGBTQIA+. I was having a look at this throughout my undergraduate then I started having a look at trans non-binary autistic narratives in my MRes that I also did at University of Portsmouth. So, it’s kind of lived experience, professional experience, academic interest is that it’s fully encompassing everything.

Catherine: I think you’re living and breathing it?  

Katie: Yeah, literally!

Catherine: So, you talked a bit about participatory research as being a part of your methodology, can you tell us a little bit more about your methodology?

Katie: Yes, so participatory action research is about working alongside a small group of other people. So, we will be having conversations about what we want to look at, co designing and co creating ways for us to talk to other participants. We could do focus groups, interviews, it could be – I’ve got a bit of a background in arts based kind of community-based projects as well – could be that these four people come in and completely and utterly blow away anything I thought that we were going to do. So, that’s really exciting. Again it’s a really difficult question to answer until I’ve spoken to everyone.

Catherine: What new insights do you think this PhD is going to provide? And how do you hope those insights will benefit people?

Katie: Trans and autistic research is relatively new and a lot of it is based around prevalence – how many autistic people are also trans how many people in the trans community are also autistic or could fit some kind of “criteria” for being autistic. There’s been 80+ years of autism research and trans research that has always been around the phenomenon of trans embodiment and autistic embodiment and so little of it is around what we want what, we need, what do we enjoy, how do we live our lives.

Recently that has started changing in trans autistic research which is really exciting but again I think when people hear “trans” and “healthcare” together there’s this immediacy of, “Oh, gender identity healthcare that’s what you’re talking about”, and that is super important for a lot of people in our community but you know we also have other healthcare considerations!

So, if there’s issues with accessibility and not being affirmed in your gender then it could make things like going to your GP – which a lot of people would probably take for granted – really difficult and then if you’re living also with chronic illness issues and mental health issues, which I also do, as well all of these things become quite ginormous really.

Catherine: Absolutely. So, in light of the recent Supreme Court ruling how do you think that’s going to affect your research?

Katie: It has already affected me personally, it’s very worrying when the government can decide who belongs to what group and what identity. It’s worrying on a wider scale because it’s not just trans people this is going to effective it’s also for cisgender women as well.

If you’re taking a bio-essentialist idea of what people think it may mean to be a woman – yes it’s a very scary time to be trying to access healthcare when you’re a trans man who happens to also be autistic and is trying to go in for cervical screening and you’re in a Women’s Health clinic and you are the only person there with the beard and no breasts.

This is just going to add another layer of distrust for trans autistic people to go in and get the care they need. I have a feeling a lot of the conversations I’m going to be having with participants are going to be very impassioned, very emotional, and probably with quite a lot of anger and anxiety around just getting their very basic healthcare needs met.

Catherine: But what a time to be conducting this research.

Katie: Yeah, unfortunately. And with what’s going on in the US now just generally, but you know the rising kind of anti-vaccine hatred and stuff. There’s this constant medicalisation of trans people and medicalization of autistic people so how do we engage in and present in a system that has created us but has created us not equally to others?

Catherine: How are you going to ensure that your research has the impact you want it to have? What are you going to do to try and make that happen?

Katie: I think what’s worked in my favour is having worked in these spaces previously and still a little bit overlapping as well, because I do many various other things outside of PhD. So, it’s already having these networks, already having these people and groups that I can speak to. And having, I don’t know how often this likes to come up in research and how much people like to hear this, but social media, is also like a really helpful way to do it, because I want to be able to share information that’s also accessible to people.

There’s no point just writing journal articles that are stuck behind a pay wall that you know 20 people who are interested in it are going to read. So, I’ve been in for all party parliamentary groups as well on cancer and also autism as well. So, there’s other kind of like policy. My third supervisor is all over health policy, so he will, he will guide me with specifically health policy stuff, which I’m super excited about.

Catherine: Well, I hope you have all the conversations that you should be having Katie thank you so much for talking to us about your research and thanks to you for listening to this episode of Speaking of research from the South Coast Doctoral Training Partnership!

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