Episode 234: Tourette syndrome community and research – with Dr. Daniel P. Jones

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Carolyn Kiel: On today’s episode I’m speaking with Dr. Daniel P. Jones, a creative practitioner, disability scholar, and postdoctoral research associate at the University of Sheffield in the UK. Daniel specializes in inclusive research methodologies focusing on the embodied experiences of public spaces, kinship and solidarity within Tourette syndrome communities. As someone who has lived experience of Tourette Syndrome himself, he has been actively engaged in community facilitation and Tourette syndrome activism in the UK for over a decade.

Daniel has also contributed to a diverse array of visual and performance artworks that highlight the lived experiences of those with Tourette syndrome and works collaboratively with scholars, activists, charitable organizations, and arts collectives to facilitate conversations and educational opportunities about Tourette syndrome.

Daniel, welcome to the podcast.

Daniel P Jones: Thank you so much for having me. It’s, it’s great to be here.

Carolyn Kiel: I’m really happy to have you here and to learn more about your story and the, and the type of research that you’re doing. So I guess to start out, how did you first realize that you have Tourette Syndrome?

Daniel P Jones: Sure. So the earliest kind of instance that I, I remember kind of ticcing was I must have been maybe four, five years old and I was at, at school. I remember I kind of knocked one side of my head, like on a table and I felt like this urge to like balance it out almost. I think that’s like the earliest, I guess instance that I can remember that was probably linked and was probably a tic.

And then I guess from there I kind of, yeah, started developing other tics, so kind of like grunts, other vocal tics like grunts and sniffs and snorts. And yeah, other kind of like twitches and, and things like that.

But yeah, it was never really something that I was too bothered by until maybe a little bit later on in, in school when maybe I was kind of like approaching teenage years. And that’s when, yeah, I went in, basically went to my parents and was like, “this is horrendous. I hate it. I can’t control my body.” And that’s when, yeah, I went to, went to go and see a medical professional, got a diagnosis maybe at age 13, 14 or so. And yeah, been ticcing ever since, I guess.

Carolyn Kiel: Wow. Had you heard of Tourette syndrome like before you got your diagnosis, or was this like a really new revelation once you got, once you got diagnosed?

Daniel P Jones: My diagnosis is kind of a bit of a strange instance. So I was technically diagnosed with Tourette syndrome, but I didn’t realize that I had been given an official diagnosis until a lot later on in life, kind of after, after my undergraduate degree even. So like I’d gone to the doctor, kind of, we, I’d, I’d kind of chatted to like GPs about like chronic tic disorders and Tourette syndrome. So I’d heard from like a GP I guess about that. But yeah, I, I guess prior to that I hadn’t really come across Tourette syndrome before. And I guess, yeah, as I kind of went through school after kind of getting diagnosed, but not really knowing I was like officially diagnosed, I obviously became more aware of Tourette’s and kind of, yeah, I was realizing that that’s probably what I had. And yeah, I just didn’t realize I’d actually had a, an official diagnosis.

And part of that is because of the way that yeah, the doctor that gave me a diagnosis kind of advised my parents to deal with it, I suppose. And it’s still quite common to this day is that parents of tourettic children will be told, you know, don’t acknowledge the tics, distract your child from, from their tics. Don’t really talk about Tourette’s because the more you talk about it, the worse it gets.

Carolyn Kiel: Oh.

Daniel P Jones: and that kind of approach is not great, but it kind of comes out of this place of, you know, if you are aware of tics and you know that they’re having more of an effect, like if you’re more aware of them, you’re probably going to end up ticcing more.

So that’s kind of where that was coming from, because if you’re talking about it, you’re like hyper aware of what you are doing. It’s kind of this, you know, don’t think about an elephant idea and now you know, everyone’s thinking about an elephant. So yeah, that’s where that approach came from. But yeah, that’s, that’s why it was a bit of a strange story for me.

And yeah, that’s, so, I, so I guess, yeah, prior to then, I hadn’t really heard of Tourette’s, but I guess I kind of discovered what that was on my own after getting that diagnosis. That’s, yeah. Very roundabout way of, of saying that, but hopefully that makes sense.

Carolyn Kiel: It does. Yeah. I know I’ve talked with some guests who are autistic and sometimes when they’re diagnosed early it, it can be similar or at least where parents are either advised not to tell them or just waiting to tell them at the right time. And yeah. Definitely understand where they’re coming from, but yeah, at least around Tourettes and, and autism, it can be, it’s, it’s difficult.

Daniel P Jones: For sure. And I think some of that confusion kind of, you know, can be perpetuated by the fact that, especially kind of when I was diagnosed, it must have been like 2009, 2010 maybe. You know, the, there weren’t the like any, I guess like interventions as such. You know, there weren’t, I mean, there still isn’t like a specific medication you can take that works for everybody or, or whatever.

So the way that Tourette syndrome is approached, if you are lucky, even, is just to deal with some of the side effects of feeling like anxious or depressed. So I ended up, you know, going to therapy, but very much talking about like anxiety and kind of, you know, do you have a, a friendship circle and, and things like that. Tourette’s never, never even came up in those sessions from what I remember. So yeah, that kind of maybe gives some more context as to the confusion. I thought maybe it was just related to me feeling anxious and depressed and, yeah.

Carolyn Kiel: You alluded to this a little bit in that the tics really started to bother you, or you started to become more aware of them in your teenage years. I guess, what was it like growing up with Tourette’s even though you didn’t know it was Tourette’s, but you know, were

Daniel P Jones: Yeah. Yeah.

Carolyn Kiel: experiencing it?

Daniel P Jones: Yeah. I mean, definitely difficult. I think that’s nothing, yeah, groundbreaking to say. But I think I, yeah, it started kind of maybe like secondary school, so that’s kind of, I guess like aged in the UK that’s like aged 12 to maybe 16. I guess high school kind of age. It’s, yeah, I started getting in in trouble because I would have tics that certain teachers might have kind of thought I was laughing or kind of coughing or like pretending to sneeze, things like that, just to be disruptive. I was, I was a very distracted child. I was, you know, very talkative. And so I think that was something that, because, you know, prior to being diagnosed with anything that hadn’t really been on anybody’s radars, people assumed it was kind of me behaving poorly, I guess. So that’s where these frustrations started to come in.

But I think what’s also interesting is kind of, yeah, I grew up in a, in a very charismatic Christian household. And part of that, why I bring that up, is kind of the, a few frustrations in, I guess, difficulties I had growing up in that specific environment as somebody who had Tourette syndrome. You know, I, there was kind of a, a very common practice at the church that my family was attending to kind of, you know, pray for people to be healed from various illnesses, disabilities, things like that. And kind of laying hands on people and praying for them was not always something that people asked for permission to do first.

And so whilst I was very kind of embedded into this kind of church environment, and so I didn’t realize the effect that that was kind of having mentally. Because sometimes I think lots of the response to somebody not being quote unquote “healed” in those contexts is kind of, you know, there’s always some kind of reason. It’s either, you know, you are, you have this issue, this illness, this disability for a reason. Or another thing that was kind of told to me was, you know, “oh, if it’s really something that is not meant for you, you know, it’s probably because there is someone that you need to forgive. So is there anyone you need to forgive?” And then, yeah, there were lots of these kind of weird things where then I was, you know, wracking my brains thinking, “oh God, who, who am I holding a grudge against? I can’t remember!” Like, and so there was a lot of those kinds of, I guess, nuanced experiences as well that kind of had that impact on, on these kind of like frustrations and things as I was growing up.

And I was very engaged and kind of embedded in that kind of church community, I guess, honestly until maybe 18 or 19 years old. So, yeah, it was definitely something that I don’t think I necessarily had the space to reflect on its impact growing up until realistically the, maybe the last five, six years.

But yeah, so very strange. And again, you know, everybody in those contexts was acting in, in they, you know, they were, they had my best interest at heart. But I think the combination of not really realizing I was just, I, you know, that I was diagnosed officially with Tourettes, but kind of knowing that I had Tourettes and then when I had to explain to somebody what was going on, I felt quite strange saying, oh, it’s Tourette Syndrome. Because I thought, well, I don’t actually have a diagnosis. And then, you know, there were all these kind of different things going on. And so yeah, a lot going on in my brain to try and I guess navigate and kind of, yeah, try to understand as I was trying to come to terms with, I guess, my identity.

Carolyn Kiel: Yeah, that is a lot to process and, wow. And it’s, it’s really fascinating that you went from not realizing that you had Tourette syndrome, to now, your field of study is really around Tourette syndrome research, so that, that’s quite an, an amazing like trajectory there.

And and I’m really interested in the things that you study. Because we were chatting about it a little bit earlier and these were fields that I was not that familiar with. So I’d love to learn more about sort of how you got into to this type of research and what it is. And specifically you were telling me that you study Human Geography, so

Daniel P Jones: Yes.

Carolyn Kiel: I’d love to learn more about that and then sort of how you apply that to Tourette Syndrome.

Daniel P Jones: Yeah. Okay. So human geography, I think until relatively recently, honestly, I don’t think I had quite realized, I guess the extent to which it’s a very UK kind of centric idea or kind of discipline. And, you know, it exists elsewhere, but I think, yeah, it’s a lot more common to, to kind of study it even at like high school and things.

But the way I kind of describe human geography, in short, the most simple way I can kind of explain it is kind of, if you think of history. And you know, we think of history as some, a discipline that’s interested in different processes that are happening in different times, right? If we kind of take that approach, geography is kind of looking at these processes and different processes that happen in different spaces, and it becomes human geography specifically when it’s kind of human processes. So I guess there’s a lot of crossover with sociology as well.

Carolyn Kiel: Yeah.

Daniel P Jones: But the kind of geographical perspective is that things are often looked at through like a framework of space and kind of the idea of places and kind of how people relate to them.

I think, yeah, overall the aims of human geography are to, yeah, look at space and place and kind of think about scale, I guess, and kind of the different scales at which different processes happen in these different spaces. And, you know, it’s about people and their relationships with their surroundings.

And I think the way that I ended up getting into it was quite strange, really. I think I, I did geography just ’cause I, at high school when I was doing GCSEs, I just needed another subject to choose for school. I think it, I had a space, I had to choose something. I thought. I enjoy this, you know, and at that point I was very much more interested in all the cool things like volcanoes and, you know, like evolution and, and, and all of that sort of kind of physical, I guess environmental science kind of stuff. And so I did that. The same thing happened when I went to do college or kind of sixth form and do like A levels, which is, you know, just before university qualifications. Again, in the UK it was common to choose four subjects to do, and I had three that I wanted to do. And then I thought, hey, I’m, you know, I enjoy geography. I’m getting okay grades, you know. Let’s just put that in there. And then, yeah, it was quite strange. I’ve ended up almost kind of falling into like a geography degree. ’cause it’s a very broad topic. You kind of, there’s a bit of a running joke in geography that you can study anything because like if you translate it, it literally means like earth writing. So you’re writing about things that happen on earth. So, you know, it can kind of be anything. And I think my, like indecision of what I wanted to do, kind of spoke to geography.

So I ended up doing a geography, a bachelor’s of science in geography at university. And whilst my original focus and interest was in that kind of environmental science, climate change, you know, geology, things like that, the course that I did made everybody, regardless of what their focus was in their first year, take a an equal amount of physical and human geography modules.

And that is where I started to realize that human geography was, you know, it was more than just looking at demographics and kind of international developments and, and things like that. It was, you know, it could consider things like art and culture and sociology. And so yeah, I kind of slowly started shifting towards that side of things as you kind of, you know, narrow down your focus at, at university. And then I ended up being interested enough in it that I did a master’s in, in, yeah, cultural geography, which is like a sub area of, of human geography. But yeah, so it is a strange way that I got into that.

And then it was in my master’s program actually, that I remember sitting in like a, a seminar where we were talking about how bodies interact with different spaces and how the kind of very, almost like everyday idea of kind of how bodies move through spaces and how they use them. And the way that it was kind of framed is that all movement is there for a reason. You know, everything that the, the human body does, you know, it’s reacting to something in a space and it’s, whether you think it or not, it might be a subconscious thing where you might move out the way of someone, or, you know, all these different things where it was kind of suggesting that every movement, every interaction with a space had purpose. Again, it was at this time I still didn’t realize that I had like an official diagnosis of Tourette syndrome, but I would, you know, have told people that I, I had Tourette’s at that point. And yeah, sitting in that seminar, I was thinking, “I don’t relate to this, because what purpose does this twitch have? You know, what purpose does, you know, me making like a high pitched squeak have in this context?” And at that moment I would’ve argued that it doesn’t really have a purpose. And so I ended up thinking that that might be an interesting thing to do a dissertation on.

Actually, this is where I then realized that I actually had a diagnosis because I was kind of chatting to my supervisor and she was asking about like my approaches. And I said, “oh, well I, is it ethical for me to like write about my own experiences if I am not actually diagnosed?” And then she was like, “oh, you know, it’s up to you. It’s your decision.” And I thought, I’m going to see if I can, like, you know, go through this process of getting diagnosed. I had like a couple of months to sort it out at that point, didn’t realize that it would’ve been a much longer process if I hadn’t had a diagnosis at that point. Yeah, and I just got a, an email back from, from the doctor saying “you were diagnosed in 2009. And at that point it was 2018.

Carolyn Kiel: Wow.

Daniel P Jones: Wow. Yeah. And so I was like, “oh God, like, okay, well I guess it is ethical for me to do this research.” But then obviously that raised a lot of other questions. And yeah, it got me thinking about, I guess, yeah, my, how my understanding of Tourette’s was perhaps different because I hadn’t realized that it was something that I had officially been diagnosed with. And so I hadn’t necessarily sought out community, I hadn’t necessarily sought out treatment or support. You know, I was technically classed as disabled, but I wouldn’t have considered myself disabled. I wouldn’t, I didn’t apply for any kind of, you know, adjustments that I would’ve qualified for at university and probably could have done with, to be honest. And yeah, I think all of that together then made me super, super interested in kind of looking into Tourette’s more. And in all honesty, I think, it almost became a bit of like a, a selfish thing where I was like, “I’m gonna, just going to use this master’s degree to kind of figure out who I am, and try and understand what on earth is going on.” And I think, yeah, and I was doing that kind of looking at specifically, you know, how do people with Tourettes interact with space? And from there I realized it was a lot bigger than I had realized. And so a few years later I ended up, yeah, applying to do a PhD in it. And I, yeah, passed that PhD a month or so ago and now we’re here.

Carolyn Kiel: Yeah!

Daniel P Jones: Somehow, somehow researching Tourette syndrome still to this day.

Carolyn Kiel: That’s awesome. Well, congratulations on passing over the past month or so! That’s really cool. Yeah, it’s, it sounds like you were really, you, you found this part of the research that was sort of like missing from the discipline of human geography and, and were able to start looking into that with your, your thesis and, and your research that came after that.

So yeah, tell, tell me a little bit about your thesis research. I, I

Daniel P Jones: yeah,

Carolyn Kiel: you told me that you, in, you like interviewed some people with Tourette syndrome. And kind of got their

Daniel P Jones: yeah,

Carolyn Kiel: data in that. What was that like?

Daniel P Jones: Yeah, for sure. So the, the PhD research that I did focused on specifically the experiences of public spaces that adults diagnosed with Tourette’s were having. You know, there’s a lot of gaps I would argue still in the literature regarding experiences of Tourette’s in adulthood because it’s kind of, you know, assumed to be like a, a, something that affects children mostly. And it’s quite frankly, easier to get funding to research and kind of frame your research as looking to improve the wellbeing of children than the wellbeing of adults. You know, that’s just, it’s how it is. It’s gonna tug on people’s heartstrings a bit more. So yeah, so that’s kind of where that focus came in.

And within that, I wanted to look at specifically, kind of comparing the experiences had in like physical public spaces. So just kind of like parks, shopping malls. You know, everyday kind of spaces that people use physically, but also compare that to, I guess, digital public spaces and kind of thinking about things like social media, kind of like online forums, yeah, and things like that. And basically try and make a comparison between them.

So in order to do that, I, we had a, a, a bunch of like advisory focus groups that I set up in collaboration with a great charity in Hull in the UK called TIC Hull, which is Tourette’s Inclusion in the Community is what, is what that stands for. And yeah, we did kind of advisory focus groups where we, we got people from around the world who have Tourette syndrome, yeah, just to chat about Tourette’s and kind of try and figure out the exact direction the research was going to go in. So I wanted it to not just be, you know, me writing an entire PhD thesis about my own experiences. I wanted to try and be a bit more objective. As I kind of went on, I realized that’s not necessarily a good or a bad thing. But yeah. And then from there we did a bunch of interviews as well. I think we had 36 participants that went through a couple of in-depth interviews.

And then we also did some zine making and kind of creative like arts-based workshops with a small group who are based at the charity as well. So a zine in case, I’m not sure if you’re aware of them, but it kind of, think of magazines. It’s like the last half of that word. And they’re kind of self-published, not mass produced. Like booklets that are kind of very DIY in nature, kind of very messy and can have like, art and collage and writing and anything you want really in them. And we, yeah, we, we kind of use that as a, a springboard to kind of just chatting more about experiences of public space and Tourettes.

And yeah, I brought all of that data together, so like all this kind of visual data along with the interview and the focus group transcripts, and try to make some kind of coherent argument in this thesis from, you know, a lot of really quite contrasting experiences that people were having.

And I think, yeah, the, the thesis really focused on, ended up focusing on this idea of like a sense of belonging and finding community, and kind of, yeah, looked at like ideas of kinship and yeah, community and the value of digital spaces.

Carolyn Kiel: Hmm.

Daniel P Jones: And as I was kind of maybe like a year into the PhD program is kind of when a lot of narratives kind of started coming out in, I guess in the popular kind of broadcasting media as well as in academic literature about kind of the “dangers” of social media, specifically looking at Tourette’s. This kind of idea of like the, the “TikTok tics” for example, which unfortunately is an approach that people still publish about today. But yeah, so. It was just really interesting to see this kind of like demonization of these digital public spaces. And kind of, I, I guess this kind of like witch hunt where people were going after specific content creators saying, you know, “oh, I’ve had five people this week come into my clinic and they all watch this person’s YouTube videos and you know, they, it must be coming from this person.” And then there was a whole narrative about spreading Tourette’s via social media, which yes, is, is as wild as, as that sounds.

And yeah, so kind of halfway through that research period, I saw a really significant shift in the focus of what participants were talking about. Specifically in the UK, a documentary came out that was supposed to be investigating this kind of “Britain’s Tourette’s mystery” on like one of the main kind of TV channels over here. And yeah, most, I think most of the participants that I was interviewing and working with at the time had seen it and had a lot to say about it. You know, how damaging it was and, and all of these sorts of things. So then, yeah, the digital became so much more fundamental to the thesis.

And so I ended up writing a lot about the value of these online spaces for people who otherwise felt like they couldn’t really access these physical spaces. Specifically adults because, as you turn 18 at least, well, not just in the UK, you know, when you turn 18, you kind of all service provision tends to just disappear for Tourette syndrome.

Carolyn Kiel: Oh.

Daniel P Jones: which is obviously a problem because tourettic children grow up and they become tourettic adults and then they have no support system, no community. And obviously that has negative kind of mental health outcomes as well.

So yeah, what I try to do is bring all of these different things together, to kind of do a little bit of myth busting, I guess, and kind of yeah, specifically look at these ideas of, of, I guess, belonging and community in, in kinship in. In these spaces. And I know that’s a very, you know, rambly almost way of explaining it. And you know, although it’s finished, I think it’s still like this in my head where all these ideas are all over the place. And, yeah. So I guess it, it bodes well for having more to work on in the future. But yeah, I think that that sums it up really.

Carolyn Kiel: Yeah, no, that’s a, that’s a lot. And it’s great that you were able to talk to people all around the world and get experiences. ’cause I would imagine that there are different circumstances, whether it’s culture or location or, you know, a whole variety things

Daniel P Jones: Yeah.

Carolyn Kiel: that could impact your experience growing up and living as an adult who has Tourette syndrome.

So yeah, that’s great.

Daniel P Jones: Yeah. And I think the culture was so, culture was so important as well in that you know, we, I interviewed and worked with a bunch of Global Majority ethnic folks who have Tourette syndrome. And you know, as a white man, my experiences are going to be very different. You know, I’m kind of, yeah, as a white man, I’m almost like the stereotypical image of somebody who has Tourette Syndrome.

But it was really interesting to see some of the other things that were like stopping people going to like physical support groups, you know, if they weren’t white. You know, people, I think the most commonly thought of tic is like racial slurs or swearing and things like that. Even though you know that’s not everybody, that is a possibility as a tic. And it was really interesting to see how, you know, global majority ethnic people who have Tourette syndrome were not feeling comfortable or they were quite concerned and hesitant to go to any physical support group space, because even though they might know that these are tics, that can be really triggering for them. And so these online spaces are the only spaces that they feel safe within and, and, and are comfortable within. And so yeah, that’s, I I would’ve loved to have done more work on that sort of thing as well. Because the same goes for, there were some trans and non-binary people with Tourette syndrome who I interviewed. Similar thing goes for them, kind of transphobic and homophobic slurs as tics. They were quite concerned about hearing those sometimes. And yeah, so, there’s a lot of kind of intersectional consideration that hasn’t really been had in other literature. And so that’s kind of what I’m hoping to work on, kind of moving forwards with that.

But, yeah. So again, it’s just another case of, I do a master’s, it’s too big, I do a PhD, it’s too big, there’s too many things. So I guess I’m trying to think about, yeah, what comes next in terms of yeah, being able to actually gather that data and, and do something with it.

Carolyn Kiel: Yeah. It sounds like there’s a lot of different, yeah, a lot of different topics that you could pursue because this really hasn’t been looked at from a research perspective before. Wow. And that’s great that you are also highlighting the importance of intersectionality with identities and cultures and geographic location. ’cause that’s another thing that’s just missing from, I guess, research in general, like historically has been missing a lot of views from many, many people, particularly of Global Majority.

And you’re still working with the University of Sheffield, are you able to kind of promote those more inclusive research methods or sort of use them in your own research, or continuing to do that?

Daniel P Jones: Yeah, for sure. So yeah, for context at the University of Sheffield, the project I’m specifically working on at the moment is, yeah, looking at anti ableist research cultures more generally. So it’s not like a a Tourette syndrome specific project that I’m working on, but within that I am looking at kind of, yeah, innovating, inclusive ways to do research, both for participants of research, but also for researchers themselves. And also actually, you know, thinking about how do we inclusively teach people how to do inclusive research, which sounds a little bit meta, I suppose, but, yeah, and it’s, it is a really, I’m really lucky in that my department and, and my managers are really, really encouraging of me kind of, you know, planning this other kind of Tourette syndrome research as well. And you know, there’s a, there’s a very big focus within the department that I’m in on kind of career development, because the way academia kind of works is, at least in the UK is that most of the time you are working on fixed term contracts, project by project basis. So there’s, you know, there’s an expiry date on your employment, with no room to extend for the most part. And so you’re kind of jumping between lots of different projects, trying to put together kind of application funding at the same time.

So, yeah, a lot going on, but there’s definitely, direct kind of links and crossovers between my, I guess my, like personal scholarship is what we refer to it as, and my actual like employed work as well. And I’m hoping that that’s all gonna come together at some point, and yeah, culminate in some kind of contract that is a nice length of time.

I hope that answers the question. I’ve gone on a tangent, which is, as you know, is, is very much my thing.

Carolyn Kiel: Yeah, definitely. And are you also designing a course for researchers on inclusivity? That’s really cool.

Daniel P Jones: Yeah. So within that project, one of the outputs that was kind of expected and was kind of listed on the funding application was specifically the kind of designing of an inclusive research methods course for kind of postgraduate researchers and PhD students at the University of Sheffield to take. And that, it was, you know, very flexible, it’s left very open to interpretation what that means. Realistically in the timeline that we’ve got, that’s not going to be kind of like a credited module that is like integrated into specific degree programs, but we’re currently in the process of collecting data and kind of interviewing people and doing these creative workshops, again actually with people from different faculties, from like engineering to education, to fine art, all these people are coming together to kind of chat about what inclusive research methods might mean to them.

And then from there, I guess we’re probably going to end up kind of creating some resources, whether that’s kind of like a, a series of videos or kind of materials for people to access on websites or, you know, a couple of training workshops that we might deliver to people. That’s still kind of up for debate and it’s very much dependent on what participants think would be the most useful for them. But yeah, we’re kind of like in the middle of the data collection, so that could go in any direction at the moment.

And we’re working with a great disabled person’s organization as a collaborator called Speak Up Self-Advocacy, which is like a Sheffield based disability advocacy charity basically. And they’re also coming in and informing our research as well, because, you know. It’s in a kind of disability specific, like institute that the research is based. And so realistically lots of people are going to be collaborating with partner organizations, and so we want to make sure we’re thinking about what’s inclusive for these charities and other organizations as well.

So lots of moving parts and that’s just one area of a much bigger project, as well. But yes, all that to say that we’re trying to come up with, with some kind of course as a part of, yeah, part of that role that I’m employed on, on top of looking at kind of accessible events organization as well which is a whole other aspect, but yeah.

Carolyn Kiel: Oh wow. great. Yeah, really needed. So yeah, thank you for doing all the work on that and helping other people to get better at creating accessible events and more inclusive research. ’cause yeah, that’s, that’s really important. So really, really awesome. Yeah. Yeah.

Well, Daniel, your research is really fascinating and it sounds like you’re really just getting started and there’s, there’s so much, there’s so many more topics to look into.

How can people, you know, if they wanna get in touch with you to learn more about the type of research you’re doing or the work you’re doing, how would they do that?

Daniel P Jones: Yeah, so it depends on like social medias that people use. The only one that I’m really on at the moment is Blue Sky. So if you just type in “Daniel P. Jones” I’ll, I’ll probably come up. But if you type that into Google and then just “Tourette syndrome” my work usually comes up. There’s some old emails on there, but my most up-to-date one is whatever the Sheffield one is. And I’m always, yeah, always happy to chat to people about research methods, more generally speaking or Tourette syndrome specific stuff. Like I said, we are kind of in the early stages both in this research methods project, but also in my own kind of scholarship on Tourette’s of putting together like funding applications and things.

So yeah, I’m always open to, to chatting to people and to, yeah, just I guess connecting with, with the Tourette community as well, and I guess other stakeholders who are interested in Tourette’s and, to try and progress things a little bit further and hopefully a bit faster so that it can kind of catch up a little bit with everything else.

Carolyn Kiel: That’s awesome. Yeah, and, and again, the research topics are really exciting. ’cause I would think that when people think of Tourette’s research, it’s probably, you know, very, you know, cure based or like

Daniel P Jones: Yes. Yeah.

Carolyn Kiel: tic suppression based, and it’s like,

Daniel P Jones: Oh definitely.

Carolyn Kiel: there’s a place for that. But there are also adults who need community and need support like now.

So like how do

Daniel P Jones: Yeah.

Carolyn Kiel: do something that’s affirming of, you know, the experience you’re going through right now? Yeah.

Daniel P Jones: And I think that’s where my kind of human geography background is, has really had an influence. I think the majority of research into Tourettes is being done from like a, a psychology, like a kind of clinical perspective like psychiatry, psychology I guess pediatric medicine specifically a lot of the time.

And so, there’s a very different focus in these kind of medical spaces than there is in these like social science and humanities spaces. And again, what I kind of am trying to work towards, it’s like you said, you know, there’s a time and a place and then there is a need for these kinds of things and this research to be done in these medical ways, but there’s also a need for the social aspect. And a lot of the time, these kind of, you know, medical science and social science when it comes to disability and Tourette syndrome specifically, they really butt heads and they don’t collaborate and they, they, they’re always just at each other. And, you know, don’t get me wrong, I think there’s an awful lot of kind of bad practice out there and papers that are really stigmatizing, like on, to be honest, on both sides. And I think what I am trying to do in, in the way that I’m moving forwards with my research on Tourette’s is try and find a way to bring, bring these two together and, you know, basically bring all the best parts of both and kind of have the nuance of like the social science, but with, you know, other kind of like, you know, physiological expertise and things of, of medical science and yeah. And so that’s what I’m really wrestling with at the moment. And where I guess I’m trying to, to push for something new and a bit more collaborative and that basically the focus is centering tourettic people rather than, talking bad about another discipline.

Carolyn Kiel: No, that makes a lot of sense. Really important stuff.

So, yeah, Daniel, as as we close out the interview today, is there anything else that you’d like our listeners to know or anything that they can help or support you with?

Daniel P Jones: There’s, there’s nothing specific to plug, I suppose. I, I guess other than, yeah, the, the research that I’ve got going on at the moment. Again, if you are interested in Tourette syndrome or kind of creative and inclusive research methods, if you just type in Daniel P. Jones, University of Sheffield, or Tourette Syndrome or creative methods, you know, there’ll be some things that come up. For the most part, everything is open access, but you know, if people want to get in touch with me, they can email me or I’ve got a website as well that kind of touches more on like the creative practitioner side of the work that I do as well, which is just DanielPJones.com. And yeah, you’re welcome to contact me via there, but inbox is always open, always happy to have a natter, I suppose.

And also I’m just really curious to hear about any other research going on in Tourette syndrome specifically if it’s being done by tourettic people themselves, whether you know you’re in a university setting or outside of it. We’re trying to, I’m, yeah, working on something at the moment, trying to bring people who, tourettic people together who are engaged in these kind of I guess this knowledge production and kind of writing around Tourette’s.

Carolyn Kiel: Mm-hmm.

Daniel P Jones: With, I guess I hope to kind of set up some kind of network and

Carolyn Kiel: Yeah.

Daniel P Jones: encourage more collaboration. So I guess if that is relevant or if that applies to anyone listening, then yeah, please do get in touch. I’d love to chat.

Carolyn Kiel: Yeah. Well, that’s awesome. Yeah. Well, Daniel, thank you so much for being a guest on my show today. I really enjoyed learning about your, your own personal story with Tourette’s and, and all the great research you’re doing. So thanks again for being on my show.

Daniel P Jones: No, thank you so much for having me. Yeah, it’s been, it’s been great to chat. Thanks.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at Beyond6seconds.net. Until next time.