This is the transcript from the recent OCD Fam podcast. You can listen via podcast here and via YouTube here.

Summary

The OCD Fam podcast featured a conversation between me and Nicole. I shared updates on my busy life and advocacy work. I discussed the importance of joy in healthcare interactions and the challenges of doing research with marginalised communities. Despite facing obstacles in applying for a PhD, I successfully navigated the process with supportive mentors. Lastly, I highligh my upcoming symposium centered on sociology and critical disability studies, emphasising the significance of community and connection in research and personal experiences.

Full Transcript

Nicole:: Well, welcome back to the OCD Family podcast. And I I’m happy today because I’ve, my friend Katie Munday back, they’re here to share their wisdom and an update. We had you on the show, maybe, gosh, was it two years now, Katie? It felt like yesterday. But Katie and I have also kept in touch and so maybe that’s partly why it hasn’t felt that long. But I’m so excited to have Katie back because Katie is doing great things, is very, very busy. And so first, first things first, I just wanna welcome you back to the fam here. We are so happy to have you.

Katie:: Yeah, thank you. Thank you for having me. I’m happy to be back t Yes. I only know that day ’cause I not tend to be very good with dates, because I did a blog transcript and everything else like that and I thought, oh, look, when that was March, 2023. Wow.

Nicole:: That is wild. Yes. And so family as always, I’m going to have a blog that corresponds with this episode’s podcast over at ocdfamilypodcast.com, and I will link that prior episode because we were talking about the intersectionality of being autistic, of trans, we talked about OCD, we talked about so many things in that episode, and I really valued that conversation.

I would love to hear an update regarding how you’ve been?

Katie:: Oh my goodness. For two years. busy. Yes. I have been busy being a mum to my little boy, which has been gorgeous and getting to know him and for him growing and kind of getting to learn each other and being around each other. He’s an absolute joy to be with. And lots of writing and reading. I’m still carrying on with wheelchair basketball, which I’m absolutely loving. I’ve been coaching that for about eight, nine years now.

Nicole:: Well for people listening, that are newer to meeting Katie, Katie has done incredible work for advocating for disabled, people in many different capacities, for people in wheelchairs, for, autistic people. You’ve been before parliament, in advocating for this. I mean very, very impressive stuff.

Katie:: Thank you. Yeah. Very, very busy person. a lot of the work I’ve been doing over the last, oh, three years now has been specifically around, accessibility of cancer services. So anything from being asked to come into screening, and if you did, or if you didn’t come in for screening for whatever reason, all the way through to kind of coming in with symptoms, getting diagnosed, going through various stages of treatment, We also spoke to a few people who had, experiences of family members and loved ones going through palliative care as well.. So I’ve done that with neurodivergent and disabled, people and have done that with a project called Trans Aware Cancer Care.

The Importance of Accessibility

Katie:: so my biggest thing, I think from a personal point of view and from a research point of view, is just making healthcare generally more accessible to people. Mm-hmm. More validating. Mm-hmm. dare I say, also places of joy as well. Mm-hmm. I was thinking about this the other day about in doing so, so many years of like access work.

And, you know, I think striving so much to get something that is appropriate, that is accessible, that means something that is valuable of our times and our spoons and resources. Just disabled people. Trans people, otherwise minoritized people. I forget and I have a feeling that other advocates activists and researchers and whatever area people are working on.

Is that joy is very central to accessibility. So, that’s something I’ve been thinking about the last, last couple of months as well, once I started my PhD , in a similar kind of area.

Nicole:: You know, it’s a really interesting and important point because when we think, when anyone’s coming in to access services, whether it’s for physical health or mental health, maybe for access for, financial support, there’s a lot of grief.

There’s a lot of pain, there’s a lot of fear, that accompanies that. And naturally, as people, we need wins. We need to feel like, Hey, I can go in and I can have a win. And, I imagine joy, feeling hopeful, all of that kind of fits in the, I need to be able to also access a win. And particularly for some of these services.

say someone who has had lifelong OCD not realizing they have OCD, they come in they’re afraid. They’re afraid that there’s not going to be a win. They’re afraid that this treatment isn’t going to help. They’re afraid that they’re just the screw up. and so it’s a pretty shitty place to be.

It, is scary and I think joy Yes. Is often not what we think when, when we think about anything from a medical model ’cause the medical model is like, oh no, this is, , uncomfortable and, a nuisance or problematic for us. Not, not this is, you have strengths. How can we, how can we amplify them kind of model. So, yeah. Yeah. It’s really good point.

Katie:: And yeah, I think that brings me to another thing is even when you do research that, critiques, dismantles, disorientates, however you wanna word it, the kind of medical model of things, you are still perpetuating that, or at least I found that I have been doing that.

So, there was work around the trans, aware cancer care that we were doing. And, you know, there was themes, we were theming people’s experiences of cancer services. And then it took me a little while to just think, hold up. Why are we, why are we theming queer experiences? Like, that doesn’t make any sense to me.

You know, LGBTQIA+ people have dismantled, reshaped, whatever the boxes of what sexuality, gender, relationality is to then be put into boxes. Mm-hmm. Within research is madness, right. This is fucking insane. So, there was a big hoo-ha about, the theming and, uh, you know, myself and the other trans community researchers, felt the way we did about it, and other members of the team felt the way that they felt about it.

And we also had a, a lot of support as well with other members of the team. but I suppose there’s that, there’s, there’s this thing about doing research that also perpetuate harm, or even if it doesn’t perpetuate harm, it’s still perpetuating, a system that relies on normativity.

So I, think, constantly having to question is a really difficult thing, but it’s a really important part of Yeah. Of research and activism and various other things. Definitely.

Nicole:: It’s a great point because you, again, and we say this a lot when we’re talking about OCD, if we zoom out, we can get a different perspective, right?

And so you zoom out and you go, we’re trading one box for another. That’s what it is, right? But then research also wants to reduce things down to a petri dish because it wants to know if the thing that you’re studying, that you’re hypothesizing, that you’re doing is really the variable causing or, creating a mechanism here for the change that you’re trying to study.

And so you have to block out these other variables, but then automatically it is. Reinforcing the sides of this box, right, that you have to fit into this box. that really doesn’t, you know, at least in research, something that we talk about when we go over OCD research is, for a lot of us, none of us live in this Petri dish life.

It’s “many different things, and.” But for them to be able to study it, then it has to get reduced down to like, when does it ever look like Just this in the wild? I mean, I don’t know. Mm-hmm. So it’s, it’s a challenge, but

Getting Into A Doctoral Program

Nicole:: as you’re talking about research, it reminds me that’s another thing you’re doing. So, Katie is in a doctoral program and we were chitchatting before we started recording.

would love to hear about that process because y’all, Katie is making a name for themselves, already has for many years runs a very important advocacy, not only, with in their country, but online has a , really powerful presence. We’re gonna talk about an article you recently published, but I would love to hear about what that process was like getting into graduate school and starting the PhD work?

Katie:: Oh, so much. yeah. Applying for a PhD. I’m gonna say specifically in the UK ’cause that’s why I’m at, but I can imagine it’s across the world is all a lot. There’s a lot of administrative things, there’s a lot of organizing, remembering, all these other executive function things that if you are ADHD and autistic like me, and or they have OCD and other mental health issues, that’s, (a lot.) Not always your favorite or best thing to do. Right. so, I think I applied or I tried to apply once and I just got several steps through it and I just, I thought I just can’t do the last 30 steps. Because there are so many steps. Right, right. yeah, so it’s, it’s been, yeah, two years in the making, I suppose to get onto my PhD program.

Thankfully, my first supervisor is, Steven Kapp, who some people will probably know as an exceedingly good autistic autism researcher. Emine Gurbuz, who is an autism researcher as well, and Chris Papadopoulos, who is at a different university. He has a brilliant mind, he’s ADHD, and does a lot of work around health policy. And we co-founded autistic substance use network together. which I can go a bit more on in a minute. but yeah, really fantastic, really fantastic team. Super chuffed.

I knew two of these people already. So that, that cuts out, that cuts out quite a lot of, quite a lot of control, right? Yeah. So it just makes it a lot easier. I’ve written on this recently around how you decide on a supervisor who’s knowledgeable in your area, you know, and maybe also close to you. University of Portsmouth is just down the road from me, and that’s my university, that’s where I did my undergraduate where I did my masters. But also as a safe person for you. So I am trans non-binary, but it’s a bit more complicated than that but for all other people need to know is that my pronouns are they/them, and I need to be spoken about in a kind of gender neutral way.

Having autistic needs, ADHD needs, but also not just needs, embodiments culture, the way of being, you know? Like, I, don’t change who I am, depending on who I’m talking to. You know, I talk to the milkman the same way I talk to my mother, the same way I talk to my boss the same way I talk to you.

Like, verybody gets the same version of Katie, pretty much. Yes. I mean, when I work with kids, they don’t swear, but apart from that, there’s, it’s literally exactly the same. Like, that’s, that’s just who I am. I love it. so, yeah, so that’s really interesting. That’s really interesting at university. Sure.

I need someone who’s gonna gel with that and they need to gel with that too. There’s no point you know, uh, me being, supervised by someone who’s gotta stick up their ass. That’s just not really, it’s not really gonna be how it works. Mm-hmm. Um, but also I need to be safe valued and looked after in that way.

That’s a really difficult thing if you don’t know your supervisors. I’d worked with Steven previously, mentoring one of his master’s students who was doing work around autistic people, being able to access gender identity healthcare in the uk. Steven was aware of my work and said, “Katie, I know you’re doing a master’s and you’re also pregnant, but, but did you also want to be a mentor for this MSC student?” And of course I said “yes” because that’s the kind of thing I do and then, eventually, Steven, Harley and I published on this together. So that was really brilliant.

I was very lucky to know who I wanted to be and where I wanted to be, which is a massive hurdle anyways but then it’s the paperwork and it’s the funding and the bending over backwards to be taken seriously by funders.

Playing The Disability Card

Katie:: I’m not saying all my friends are autistic, but I would say all my friends are autistic. With other autistic autism researchers who are in Portsmouth with me. There’s, there’s quite a few of us, which is gorgeous, around, you know, playing the disability card, whatever we might feel about that. And I’m waving my hands around dramatically.

But playing this disability card, so we need people to take us seriously as people with Neurodivergence, which absolutely includes mental health needs as well. but also there’s also a swing back on that for like DEI checklists. If there’s ways that, that can also be helpful for disabled neurodivergent, whoever, people getting what you need and support, then use that, then use that all day long. If someone was listening to this and thought “I feel like I need to have some kind of validation from something from somewhere”. This is it. This is your sign.

You should. You absolutely should. You belong there. You should be here. you know. I wrote a chapter on ethics applications and the inaccessibility of ethics applications in UK universities. and I think the biggest thing that I wanted people to get from that was that your work matters.

If you’re doing a PhD or you’re doing postgraduate research, or even if you’re doing early career research, the research is yours. And it matters and you matter. So ask for what you need.

Nicole:: I like that. And what I will say is when I think about, say for my kids, like if they have a support need, even if it’s a milder support need, could they do it without that? Yes. I mean, the reality is, could I get to work without my car?

Sure. But it’s gonna be quite a walk. Okay. And so it’s, okay. Sometimes I feel like there’s almost this guilty feeling if you’re like, I could use the support, but really that would just be more convenient. Okay. Well, people. Buy things. They, build things and they ask for things all the time for convenience.

you know, Katie and I were, joking round about bookmarks settings you can set in the computer, like tabs and stuff like Right. That’s convenient. If you bookmark something, it makes it easier to find just like an actual bookmark with a real book or, or a little sticky tab but yeah, I mean there’s almost this guilt of “I should only ask for support if this is really, really hard”.

Taking Space: You’re Important

Katie:: I think that relates to another complete shit show that’s going on in the UK at the moment around, we call it the benefits system in the uk.

I really don’t like that we call it that. Mm-hmm.

So, around, disabled people being able to get payments from the government every month. And one of them is called personal independence payment, but we call it pip ’cause we love an acronym.

There’s all these conversations about, how many people fake disability or whatever. I laugh ’cause it’s just, uh, it’s just laughable. Mm-hmm. you know, and the rate of that and, and how much apparently this is, this is costing taxpayers, even though pip isn’t actually an out of work benefit anyway.

So actually a lot of those taxpayers are pip Yeah. PIP payments as well. Yeah. Yeah. Oh. Like literally it’s, I, I have to laugh ’cause it just pisses me off so much. so this understanding within our government, and I have no, no doubt there is elsewhere that there is limited resources.

Mm-hmm. and I think when it comes to people asking for help, getting help in whatever way, there’s always this thought of, but I’m, I’m not the worst off. Which is an admirable way to think about your life and go about your life. You know? I am, I am not, the person who needs the most amount of help.

I’d really love if this help could go to this group of people. Perfect. I love, that’s exceedingly honorable. But things don’t work Like that. It’s not a piece of pie. You know, there’s not like, there’s 30 pieces of pie and if I take up one of the pies, somebody else doesn’t get to eat.

That’s not how this works. Right. And I see that as well within kind of this imposter syndrome. I see that with other postgraduate researchers all the time. This, oh, how could I take up space there, when that space could be for somebody else. Okay. But why is somebody else’s position there more important than your position being there?

And I see also a lot of people apologizing for, for a whole host of things that I just sit there and I listen and I take it all in, and then I, I go, I wonder sometimes I’ll ask people what it is that you think that you can’t take up space, right?

That you don’t have anything to say on this subject. That what you do have to say on this subject isn’t, “well, you know, maybe, I’m not the most qualified to say this and maybe this and maybe that,” All of that to say really is that if you are neurodivergent or any kind of person really mm-hmm.

Is that you get to live your life. Right. So. Do the thing. Right. You know, as long as you are being safe and you’re looking after yourself, then do it. Right. You know, there’s, you don’t gate keep yourself. There’s so many other people, you’re gate keeping us from doing stuff. Don’t do it to yourself.

Nicole:: Multiple things can be true at once. A person, your neighbor, your friend, your family member can need space. And you too. And, and like you’re saying, it’s innate that we all have needs. There’s, there’s no shame in that. You’re gonna find bad actors anywhere that are trying to take advantage of different systems, different benefits, quote unquote different things.

The conception of different programs is because there are legitimate needs that weren’t being supported. And just because the program exists, it does not mean all the support needs are getting met for the people that, qualify. But somehow, like you said, it’s not rationing a piece of pie to say that yeah, this person maybe has more support needs, but you still have needs as a person.

You’re more likely to have bigger support needs down the road if you’re not getting what could have been. Just a, a helpful support earlier on, and so yeah. It, it’s, it gets very, very complicated.

Katie:: Yeah. That’s a really good point. Yeah.

You are important people. You are an important person. Yeah. Yeah. That’s it. There’s no ifs, there’s no buts. There’s no, you are an important person if you do this or if you do that, or if you live in a certain way, you are an important person. Look after yourself, and if other people are willing and organizations and the government, oh, thank God, like, you know mm-hmm.

You are absolutely worth doing that for. If people could take anything away from anything I say at any point in my life: you are worth being here. And we love you being here.

Nicole:: Yes. That’s beautiful. I, appreciate that so much.

Autistic Substance Use Network (ASUN)

Nicole:: As we are diving in again, Katie and I we’re like, oh my gosh, how long has this month been? but we were like, yeah, it’s, it’s still autism acceptance month. I wanted to mention on April 2nd, you published an article and I would love for you to share about this publication you authored, because I think it’s fantastic and I want the world here to be able to hear about it.

Katie:: You know, the things happened, you know, within the last 10 years, and, an amazing response to it. so David Grey Hammond, who runs Emergent Divergence, if you wanna know stuff about. David does a lot of work around, schizophrenia mental health, institutionalization, mad Pride. Go check out this stuff. And he created a survey to talk about autistic people’s substance use and experiences of substance use services and had just over 500 people respond to that survey online.

Nicole:: That’s really good.

Katie:: Which is amazing. Yeah and, basically that was picked up, by Chris Papadopoulos. And, we’ve been working on digging through all this information. Let me tell you all this data. So it’s quantitative. So that’s all the numbers, statistics, percentages, all of this kind of caper, really not my kind of thing.

Chris took care of quite a lot of that and I took care of the qualitative stuff – what are the words that people used to tell their stories to us. And one of the things, one of, many of the outputs we’re just waiting on various other things from other papers and stuff like that.

Other journals, was our newest journal came out in the 2nd of April, through autism and adulthood: improving substance use services for autistic adults: insights and recommendations for autistic adults.

And the nice thing about the research is that we are a mixed team of neurodivergence. as I was saying about David, and this is something that is known, David is schizophrenic and various other mental health issues. Also OCD as well actually. Mm-hmm. Another brilliant person for you to talk to, Tanya is also an ADHD autistic. Chris is ADHD, I’m ADHD and autistic. Lots of mental health variations and chronic illness. Throughout we have experiences in substance use and substance use services.

And there’s a whole whole adage of, you know, within disability activism. But I know that the neurodiversity movement has definitely, being gung ho with this around “nothing about us, without us.” and I think that’s really important within autism research, to have autistic people running that. ADHD research with ADHD folk leading it. OCD research with OCD people leading on that, or at least heavily consulted in that kind of work. But also I feel like it’s really important to have that lived experience. So not just we are autistic people doing work around autistic people’s experiences of substance use services, but also that we have some of our own experiences.

Exploring Bias v. Representation

Katie:: Now, a lot of people might say, oh, but Katie, and they have said it. I was there. You know. Oh, Katie, doesn’t that mean that you bring bias to your work? And my first answers to that question is, “Why is it that autistic people always bring bias to our work, but non-autistic people don’t bring bias to autism research?”

That’s the first question. It’s always a rhetorical question. ’cause I let people ponder that and take that home with them and unpack that in their own time. Unless they wanna pay me to do that with them. That, that is my gift to you, right?

Nicole:: Yes, I will have their email listed. Feel free to reach out to Katie if you wanna hire them. they’re a little busy though, so please be mindful.

Katie:: I kind of always half make that joke because I’m like, you know, there’s a lot of autistic advocates and a lot of marginalized people in general are kind of considered these free encyclopedias mm-hmm.

Of, you know, black experiences, native experiences, disabled experiences, OCD experiences. And you think, yeah, brilliant. We do have a lot of information around these areas, but you really need to pay us for our time, ’cause not only is this a great deal of knowledge, but also it is a great deal of our lives that we are giving to you. Yeah. And this should not be given for free.

Nicole:: Right.

Katie:: but anyways, back to my point. Lived experience in the work that I do, in the way that I understand research and social research is that it brings an added layer. It brings more depth, it brings more texture. However it is you might wanna describe it. It, it can bring things to life. So I’m not saying that all research around this area has to be done with lived experience because quite frankly, we could do with all the allies and the accomplices as we get in autism research. but there is something there that is very powerful, to be able to bring your own experiences to that kind of work.

It’s powerful for you as an individual researcher, but it’s powerful to the research as well. And also what I will say about that, and this supposed idea of bias mm-hmm. Is that David is a very well respected person in what he does. he does a lot of activism, a lot of advocacy, mentoring, you name it, the man is also very, very busy and he does a lot of amazing work. So because he is a trusted public figure, people want to share their stories.

And they see this in, in trans autistic research as well. Mm-hmm. You know, when I was doing my masters and I was doing narratives of, trans and non-binary autistic people. And, you know, some of the participants said to me, I wouldn’t have shared as freely with you if I, didn’t know you were trans. And I didn’t know you were autistic. And one of them said, I wouldn’t sign up for the work at all and that was a person that the interviews were supposed to be an hour long, and they spoke to me for about two and a half hours.

They were like “If you weren’t living at the intersection that you are at, I wouldn’t have spoken”. This is two and a half hours worth of, their story. You know, connection community, bringing words to stuff that they might not have brought words to before.

There’s definitely a cathartic community building element too. To the kind of research that I’m involved with and several of those participants I still talk to online. I’ve done various bits of work with, or they put work my way and I put work their way.

So, when I say community building, I don’t just mean, “I spoke to someone two hours ago, like five years ago and like, oh, we’re all right”. You know, I mean, it has the ability to be long lasting.

Nicole:: Right. Katie, maybe I’m being bold, but I kind of feel like that’s. What I have with you a bit that we started talking years ago. And when I catch up with you, I’m like, like yesterday we were saying this, it’s like yesterday, but because there’s that safety and I think that , just even when you were describing, the difficulty with graduate school, finding a supervisor that you can have that conversation with.

Prioritizing Safety

Nicole:: I think it’s one of the things we have to think about too when we think about research, is the person going to feel safe to be able to, unmasked to be able to speak or verbalize or share their experience.

And it’s one of those things where research has not always been and continues to have room for growth in recognizing stigmas that though may not have been intended to be harmful, have, receive feedback regarding how harmful it can be. And so, it’s that challenging space, but I’m sure it’s such a treasure when you are getting a chance to sit down and these folks are like, but I’m an important person too, right?

Like, I get to be visible. And I don’t have to be scared. it’s vulnerable. So it might feel scary in that way, but also I’m safe to be visible.

Katie:: Which is a really beautiful thing. just like in life, right. Let alone, you know, research. Right. and I think there’s, there’s like a lot of research that’s still going on in the UK and probably other places too, around, why don’t these, we use the word underserved populations quite a lot, which I, I, I’m not wholly keen on myself.

 Especially within healthcare research. Why did these groups of people not want to talk to researchers? I think well, but look at your research team, right. Can you look at your research team? Like, why is it that Black people and people of color don’t wanna talk to us? Because they’re not in any way represented on your research team, your funders board…

And then like the, the Roma traveling community, polyamorous, whatever group of people you might wanna talk to. “Oh, they just really don’t wanna talk to us.” And I was like, also, the academy doesn’t, it shouldn’t own this fucking information. Right?

Nicole:: Right.

Katie:: Just because you are in research doesn’t mean that you get to know. It’s not your place to know. It’s not your information to have, let alone is it your information that you’d slap your name all over and put in a journal somewhere.

Nicole:: and I think to bring that back to what I was talking about, about doing stuff in, and actually what you were talking about, about having safer spaces for people to do research and have conversations in whatever you might wanna call it, is also that there’s a lot of cultural elements.

Katie:: There’s gonna be a lot of autism researchers and a lot of researchers on neurodivergence in general who don’t understand spoon theory.

Where the spoon theory comes from, what that means, what are you talking about when you say that? And various other things, you know, and, and even terms that we don’t necessarily even have words for. Mm-hmm. So like, I’m also chronically ill, so when I ask someone who I know is also chronically ill, if they’re all right, I know that the answer they give me is bullshit.

“No, I’m alright” – Okay, so what’s going on then? Come on, let’s unpack this. Yeah, right. so what’s actually going on here?

So, there, there’s all of this so when people talk about bias mm-hmm. That really, really pisses me off because there is just, it, it’s such a flattened understanding of what transness means, or what being autistic means, or what being OCD means, you know, there’s this very flat idea.

Nicole:: well, in, in the same breath, researchers will talk about the heterogeneity of OCD, which, most people are gonna be like, what does that mean?

And that’s just a really cerebral way to describe that it’s unique and presents differently in different situations. not that unlike say, a spectrum or so many other things, right? Where we could say there’s bias about one thing or the other, but you’re also saying like, this is unique and it shows up though we could say it functions and has some pattern recognition to the function.

It still shows up and exists in different ways across different people. And so it becomes one of those really hard things where we go, well, how do we study this and reduce variables but not introduce a bias. And then it is really interesting if you think about, yeah, well if you have lived experience, perhaps you could be biased, but don’t you have a bias if you don’t have that experience as well?

Even within the autistic community, you and I were discussing last time, you were on the show about how even different level support needs or, Functioning levels for autistic people, there can be bias. You had, I wanna say if I recall, you had said something to the effect of like, “I leveled up”.

Katie:: Wow. That’s a good memory you’ve got!

Nicole:: Yeah. And you got flambed a little bit!

Katie:: I did. I got full El Scorchio’d, let me tell you, in that support group, for those who don’t remember this, and I almost didn’t until Nicole just bought it up. I was talking about being in a support group and you get levels. So, when I got my autism diagnosis and I was… whatever level I am, and then I just said to everyone, oh, you know, I’ve leveled up and it was supposed to be in jest, humorous within a group of autistic people. And I got my ass handed to me.

Nicole:: yes. Well, and it’s one of those things where, you know, if we look within any community, whether we’re talking about a marginalized community or just broadly within the Allistic community, Just because you have something that unites you, doesn’t mean there’s not an array of different feelings, thoughts, expectations.

Right. You know, so for you, I think again, you had said in, and I won’t repeat it too much you guys because you can go listen to it, but Katie was expressing how they like to describe things or even maybe sometimes themself as weird, but people get really prickly. Some people are like, yeah, I get you. I read what you’re saying. Other people are like, [00:42:00] you are, demeaning people, or they can come up with anything. I’m just pulling that outta my ass. But we know, we know, we know how people are. Yeah, yeah, yeah. And so

what happens is it’s hard to have an actual conversation then with people, let alone make some of those advancements and much needed progress in research and in support, because we get caught up on how we’re saying things. And I’m not saying people can’t be offended or feel very strongly and passionately, but also how can we not lose sight of the goal, which is we need improvement here.

And the fact that we don’t agree. Okay. Doesn’t that show that we need improvement to kind of help be able to access an ability to describe whether it’s autistic experience or anything, and have that represented better in the research? ’cause we don’t get anywhere with it being where it’s at.

It’s not making progress there. But then again, we were getting caught up because Oh my goodness, you said weird and, you’ve leveled up and the, the spiral ensues.

Katie:: Yeah. a hundred percent. I agree with that, and I kind of don’t agree with that in some ways because like you say, language is important.

Yeah. but I think what the, the vital part that a lot of people I perceive online anyways is that people, and I put myself in that ’cause I’m also a person. We’re all important people.

The Importance Of Practicing What We Preach

Katie:: so yeah, just I see a lot in autistic spaces online talking about diversity and talking about this and talking about that. And then, so many of us don’t practice what we preach. Mm-hmm. And I certainly don’t do it consistently.

This is something I’m still working myself. Is that understanding that people are coming from different places with this. Mm-hmm. Which sounds like, oh, Katie, of course they’re coming from different places with this. Right. and it is, it should be that simple, but it’s not because, especially, aware I’m white and I have various other privileges.

It’s very easy for me to think that my experience is some kind of universal experience. Mm-hmm. The autistic experience, the trans experience. and not necessarily even just in a very explicit way of thinking that, and a very direct way of thinking that, but also in a, well, of course, that’s no knowledge.

Well, of course you know that you should know that. Or all these expectations that I might put on other people online and various other places mm-hmm. To know, appreciate, understand, and also value the same information, knowledge, and processes that I do. And it’s just complete nonsense. Why do we do that to each other?

You should be using this word, and you should be using that word, and you should be using this word. I appreciate totally that words are exceedingly important. but there, sometimes seems to be a lot of dog piling online and various other things. Mm-hmm. Just like this conversation could have gone a completely different way.

if there wasn’t this, this standard that we’re telling non-autistic people not to do to us. But us as autistic people are gonna do it to other autistic people, that really grates me up the wrong way.

Nicole:: Well, and within so many different communities, there’s just gonna be an array of ways to think about things. I think often. I don’t know if you’ve ever found this dynamic. well, I kind of laughing at myself. Of course. I think you’re gonna have found this dynamic, and again, not to generalize, but I’m generalizing this, because as part of the human condition, but say you’re having a conversation with your son or your partner, you say something, they say something back, you’re like, they didn’t hear what I said.

Right. Or they didn’t understand the, directive or request or whatever the thing is. And so you say it again and then they maybe get a little irritated. And they say what they said again, and then you kind of have a rise in temperatures that can kind of ping pong back and forth. And I get involved in it too, y’all, so I’m not exempt from that, but when it’s other people, it’s easier to see the dynamic than when I’m engaging in it myself.

Katie:: 100 percent!

Nicole:: And so one of the things I’ll say is, you know, often when people are repeating themselves it’s because they’re not feeling heard. And sometimes when we land on different spaces or whether it’s language or something else, and, and we have, , different experiences, and this can certainly come up with privilege as well, right?

 Where we go, well, that wasn’t my experience and I’m trying to understand. And it’s difficult to have this conversation because, the person I’m talking to has no reference point for the conversation subject we’re having. So often we’re not able to really hear each other.

What happens is people talk over each other, then people kind of draw a line in the sand and you’re on that side of things, or you’re on this side of things and it doesn’t resolve the issue. I don’t think anybody walks away feeling warm and fuzzy and content with the resolution there. Instead it’s like, see, this is why It’s a kind of a double down into creating this us, them mentality.

It’s a struggle, but like, maybe this is controversial, but I don’t feel like it should be, we don’t have to agree, but we can respect and listen and like actively listen, not just hear so that we can build a defense for when the person takes a breath or stops talking, but like, actually listen and we can say why we disagree and that’s in important, but there is a lot more of a tendency to flambe, and it’s challenging when you’re trying to get things done, trying to improve research and representation in different things because it goes so quickly from, you know what’s weird up to the flambe level, you know?.

Katie:: I appreciate what you’re saying. I think that’s why there are so many issues with, coalition building for, disability justice and various other things. is. There’s too many people who want to be correct about something as if truth is universal.

I, find myself challenging myself a lot more. This has only been happening in the last couple of years and I wish I’d been doing it sooner, but I’m doing it now. It’s just sitting in my discomfort around a few things, especially around like racism, various other things like that and not, being so quick to defend myself or defend my ideas around things.

I’m 35 now and I don’t wanna be the kind of person who’s like “No, this is the thought that I’ve always had about this particular issue or this group of people, or what I perceive to be this group of people or whatever else”. I don’t wanna be like that. I wanna be the kind of person who says, Hmm, that’s really interesting. You know? So when my son at some point turns around to me and my husband and says, you know, oh, you’ve been using that word by really prefer that you would not use that word or mm-hmm.

I talk about this within cancer research as well, around, practitioners being afraid of getting it wrong but what if we flipped that and said, we’re not afraid of getting it wrong, we’re excited about getting it right. And what that means for challenging and, and progressing, practice and knowledge and all these other different things.

So,I think I’ve gone from, research that was, like working within research and reading research and understanding research and when I say research, I don’t just mean like academic, I mean like blogs. Poetry, right? Other ways that people create and share knowledge, right?

Nicole:: Right.

Katie:: from just being something that is around knowledge and, sharing that information, to it, centering joy, connection, love and all of these kind of things. And those are not the kind of words that you tend to put in research.

You definitely don’t put that in research as a psychologist or let me tell you that I guess someone looks at the uni, and you don’t put those words in cancer research, right? And it is the very places that you don’t put those words, or those meanings or those understandings, frameworks, whatever you might wanna call it, that actually is the places that are crying out for that.

Nicole:: Right? Yeah. It’s such a good point. something I thought of as you were saying that is earlier we were describing how people almost apologetically, err on the side of not taking up space. But in this situation, the back in my day kind of scenario, well, we may struggle to.

validate our own needs in the current space. We’re very quick to defend the space behind us. We are defending the road traveled thus far. And so I might not ask exactly for what I need, but what you need to understand is, I learned it this way and this is how this has been. And I’ve tried to do these things and I’m a good person, and I feel like that’s what I hear, it’s like the a cry out for validation, you know?

Mm. In, in some sense. For example, if words change and your son were to come to you and say, oh, we don’t really use that anymore. The validation would be like, well, I’m not being insensitive. See, I want you to like verify for me because, because in the past, this is how it operated, and I was actually very good at helping lead the charge and et cetera.

You’re not hearing the person, they’re saying, what I’m hearing from you right now doesn’t feel like it fits or is comfortable for me, but it’s almost that “No, I need you to understand I’m actually a good person”. It’s like when somebody tries to prove like “No, I’m actually an ally…”

Katie:: So, so cringe. this is the problem I have with allyship, or at least the word and the general understanding of allyship to any marginalized group of people. I take it for trans people at the moment because, of the complete bullshit that’s going on in the UK at the moment.

So you know “I’m a good person” as if you can’t be transphobic or, do unintentionally or intentionally transphobic things. Because you’re a good person. What’s that all about? Why, why is it that people do that? But I’m a good person. I’d never do that.

Okay. But it’s not your intentions. Oh, well I didn’t intend it to be that, but can you see how you are centering yourself again. If someone said to you, I’ve told you for the 9000000th time that my pronouns are he/him. Then they tell you their life story, like “One of my cousins twice-removed – his son was a trans man and da da” I don’t need to hear all that gumf, I just need you to get it right for me. so yeah, it’s a really, really weird defensive tactic for people to scream that they’re not bad people. As if you were even saying that to begin with because we can all engage in really shitty behavior, in like really shitty behavior or if we mean to not mean to whatever.

Mm-hmm. But it’s having the good grace that when people challenge you about these things, that you sit there and go, oh yeah, no, that was, that was really crap. And apologize and take account for it. Like, it’s not, it’s not actually that difficult. Like it’s actually really easy and then we all move on as better people from there.

Nicole:: Yeah. What I will say is I think, as a marriage and family therapist, I see this dynamic across so many different settings. So for example, you know, where your intention was good, the other person didn’t appreciate your intention. You didn’t necessarily communicate or even understand maybe sometimes what your intention was, but you knew it wasn’t, to be a shitty person, and the other person is now upset.

So now you feel resentful, for example. I don’t know, take a couple. I want you to take out the trash and I have my jobs and duties around the house, but I’m always reminding you to take out the trash, which makes it kind of feel like it’s my job.

Right? And so maybe this is a conversation that you guys have had at some point or at a recurring point, right? so then the person maybe forgets to take out the trash, but they go and maybe they get you some flowers or they do the laundry or something like that because they forgot to take out the trash again.

And this has been a recurring thing. Well, you might come out and be like, you still didn’t take out the trash. And they’re like, but you’re not appreciating that I did the laundry. Well, I appreciate that you did the laundry, but I asked you to take out the trash.

Right? But I forgot, and I’m gonna do it, but to make up for it. I did the laundry. Well, I didn’t want you to do the laundry. Mm-hmm. You know, and so things get missed and then people start to feel resentful and they’re like, well. I’m damned if I do, I’m damned if I don’t. Why do I even try?

Katie:: Oh darling, please.

Nicole:: And so I see that dynamic across, so many things where people will espouse, I didn’t mean for it to be that way. Okay, well guess what? We have the ability to hear whether we meant for something to go a certain way or not, that it had this effect, cause and effect. And we can apologize or take responsibility or learn from it.

We have some choices we can make and it doesn’t even have to be more controversial than that in some of these situations. But, instead, it’s like, well, no, I tried and my intention were good and I actually felt bad. I felt bad that I forgot to take out the trash. That whole situation would’ve gone a lot better if you were like, you know what?

I totally forgot. And I bet that’s so frustrating for you. It’s frustrating for me and I feel badly about it. I know it’s not the same, but I chose to do the laundry because I’m feeling bad. But I just want you to know, like, it’s okay if you’re upset too. Like, I get that because mm-hmm. I didn’t follow [00:57:00] through.

Had that been the conversation? Would the argument even ensued? I don’t know. I guess it depends on the person, but e even if some kind of leftover feelings were there, I bet it would’ve gone. 10 outta 10 better than it would’ve gone if you were just not communicating. mm-hmm. And so there’s sometimes this fear about having, these conversations and a lot of times people aren’t gonna agree and isn’t that in some ways a beautiful thing, not when it comes to ignorance or whatever, but, but isn’t it a kind of a beautiful opportunity to learn and grow?

if we could just even approach like how can we make this better? And we’re, we’re sometimes gonna think we made it better and then look back a couple years from now and go, that was a shitty move that just totally took us down the wrong path. And so we need to course correct, but we have to be able to have those conversations to make productive choices and I see that in research as well.

Katie:: Mm mm Yeah. A hundred percent. The tension is a really interesting one in research. Yeah.

Symposium: June 11th, 2025

Nicole:: So can I ask you about, because I know that you have been working on this symposium and you were talking about how we can rally and even get different people together, teams together, thinking about different important topics.

And I know you were telling me you were looking at the intersection of sociology and just different aspects of experience to create this symposium. And I would love if you could tell the fam listening more what that’s about?

Katie:: Yeah. Yeah. Thanks. so myself two other, PhD student, friends of mine, Robin Skyer and Freden Manas, it is the first time I have said their name out loud, so I’m hoping that’s correct.

yes, we are, creating a, symposium. It’s a one day symposium, which will be hybrid as well. So as soon as I’ve got the, link for that, I’ll send that over Nicole. will be free to attend. It is with postgraduate researchers and PhD students in mind. But we are [00:59:00] literally happy for anyone to attend.

 It’s no problem. If you can’t make it on the day as well, let me tell you what the day is. Oh, sure. I believe it’s the 11th of June. So if you can’t make it on the day online or face to face, it will also be recorded as well. It’s 9.30-4.30.

I think it is gonna be a long old day. It’s gonna be brilliant. It’s going to be different. researchers, activists, advocates, people who sit in all three of those spaces talking about the intersections of sociology with, cryp theory, mad Studies and critical Disability Studies. and you might think, oh my goodness, what is all that?

That all sounds a bit intense. And it is intense, but it’s brilliant. Yeah. It’s basically around, mad pride prep pride, around taking ideas about disabled people and disabled embodiments in our experiences and creating our own thing within research. Mm-hmm. so very similar to, queer theory, where [01:00:00] that’s used by a lot of lgbtqia a plus researchers mm-hmm.

And people who do research in that area. It’s that, it’s that same kind of feel. And critical disabilities studies is a critique of, medical understandings of disability. obviously I’m summarizing here, there, three very, very interesting areas of research and very diverse within them as well.

 so yeah, so we’ve got some amazing people. Mm-hmm. Joining us for that, including, Robert Chapman, who’s from University of Durham. Some people may have read their book, which is the Empire of Normality. Mm-hmm. They’ll be talking about mad Radicals, 17th century and how that, affects the idea of the neurodiversity movement now.

 and plenty of other people besides doing panels, various other things. there will be, BSL interpretation I appreciate, that’s not very helpful for our US friends. but there’ll be, we’ve got, transcripts and captions and, you know, [01:01:00] various other things. We’re just gonna try and make it as accessible as possible.

Yeah, so that’s us. So we’ve been very busy organizing that. Which is really, really cool. We have a Blue Sky account as well. which is Crip Mad Symposium. Like, what else you gonna call it? That’s us. so feel free to, follow us on that. Yeah. And that will have all the links, all the various things, and I will send them to you anyways, Nicole.

Nicole:: You’re doing so much executive functioning that I’m tired just hearing it and I’m impressed.

Katie:: I’m tired just talking about it.

Nicole:: it’s good to know that it’s coming up so people can mark their calendars or if you’re listening to this, whether it’s days, months, years after the recording, oh yeah, that’s true. look for a recorded, version of that, or follow up with the blue sky handle and see kind of where things are at.

Now, speaking to our, our future. I’m talking to the future, Katie.

Katie:: Oh my, I can’t even deal with the, present.

I Didn’t See You There: Charlotte Gale

Nicole:: The one other thing I had on my list, and I for sure wanted to just even mention, and you referenced different styles of writing and sharing and communicating, including poetry.

And it made me think of the book, I didn’t see you there that you were telling me about, which was a collection of poetry and lived experience for, was it the author’s son who had OCD in that book?

Katie:: Yes. Okay. Uh, the whole family is neurodivergent. it’s called, I didn’t see you there: the poetic Memoirs of One Family’s Journey through Mental Health Crisis Diagnosis and Embracing Neurodivergence.

the Writers, well Pen name at least is Charlotte Gale. and that came out. Recently, earlier this year. Mm-hmm. I’m not very good with times. Mm-hmm. it might have come out just before Christmas actually, but it’s brilliant. there’s a lot of poetry in, this poetry book. Yeah. I know that sounds really strange, but if you could physically see how large the book is, you get a lot of poetry.

Nicole:: I validate that. Usually it’s like a little looking pamphlet. This is like a textbook it’s, it’s thick. This is proper. Yeah. This is

Katie:: look, yeah. Yeah. It’s really, really good. Really powerful. yeah, really beautiful. I have a feeling that this is going to be, one of many, so. Yeah. I believe it’s on Amazon again. One of the amazing things that I get to be able to do with, autistic and Living the dream, my kind of advocacy stuff that I do on my website mm-hmm.

Nicole:: They do fierce advocacy over on the website too, because you were like, oh, I got to do this. They, they, they’re doing awesome work over there. I just had to do that honor. Thank you. I appreciate,

Katie:: I appreciate that. Thank you. so yeah, autistic and living the dream beyond the website.

Of course, of course, of course. On Facebook, on Katie Munday on LinkedIn. If you wanna chat. I, I’m, I’m finding a lot of really cool people on LinkedIn, so Yeah, add me on LinkedIn if you want to. I love that. but I get to do, book [01:04:00] reviews. I dunno who decided that I was the person who was doing book reviews, but I’m very happy to do that.

 I love that. So, Charlotte sent me a copy of this and said, you know, this is coming out soon. I really want it to be pushed. could you let me know what you think about it and do a review on it? And I was like, yes. Oh, yes. Yeah, please. So I’m very pleased to be able to share that with you all today because I know that I am not a parent of someone with OCD, or at least I, I’m not thinking I am at the moment currently.

Mm-hmm. but as someone who grew up with OCD still lives with OCD and other mental health kind of stuff, I’m like, oh yeah. So, not the kind of thing you’d read all in one in one sitting. I don’t think you could, you could physically do that, but emotionally, perhaps not. Yeah. But really powerful stuff.

Nicole:: I mean, physically if you could do it, ’cause it is a big book, y’all, you’d have stamina that I don’t understand. You could read it all one sitting, but yes, it’s, it’s some heavy stuff. But representation matters and I think what a beautiful medium to be able to express oneself, whether the sadness, the joy and everything in between, through poetry.

And so I’m definitely gonna check out a copy. And I could tell you, Katie has their copy sticky noted up at like, like so many. Yes. I can see it every time. They, this is a good point. This is a good point. Every time they lift it up I’m like, oh, there’s morsels, there are morsels throughout that Yeah, that book, because they are, they have done the, the work and I can just even see that visually.

So Katie, I so appreciate your time as always and it was so good before we started recording, family, we just got an opportunity to catch up and I just, I really value you and I’m so happy. To have a conversation at any time. So this isn’t goodbye for us, and you are always welcome here. You’re part of the family.

but I am just excited because all the amazing work that you’re doing, and again, you’re like, I, I have knives left in my [01:06:00] spoon drawer here at this point, which I can imagine. and yet, reviewing books and doing all the things. And so I thank you sincerely for taking the time, helping the family to break down and understand, I think particularly how research and representation is so important for disabilities, for Neurodivergence, for identity, for, orientation, all of those things.

And so I just so appreciate you and it was wonderful chatting again.

Katie:: Thank you. Thank you very much for having me. Yeah, as soon as you messaged me the other day to say, would you come on, I was like, yes. Yes. What? Clear the schedule. Yes. I’m going to go talk to Nicole. Oh, thank you. This will be amazing.

You know, because they come onto here and it’s just, you know, just having a conversation with, am I allowed to say an old friend? Let’s say an old friend, please. That’s why not. Please. We’ve known each other a couple of years. I can say old friend. That’s fine. Yes.

Nicole:: Please say, please say old friend.

Yeah. Yes, absolutely. Yeah.

Katie:: That, that, that’s a nice thing. And I feel if I could just have one more cheeky little reflection

Nicole:: Oh yeah.

Katie:: Of what I would say, and I, I spoke about this last time we spoke actually around community and online community and what that might look like for OCD folks and what that might look like for autistic people as well.

But I find that some of my richest friendships and connections with other people are online. And if people are new to an OCD diagnosis or an autism diagnosis, or whatever it might be mm-hmm. Find your people online. They exist and they’re wonderful. And these connections are valid and real and beautiful.

So do it.

Nicole:: Yes. And they’re, and dare I say the word of the day, important. They’re important. They’re no less important. They’re no less important just because they’re virtual. They matter.

Katie:: They bring joy. Yes. Bring joy. And they’re important. Yes. Yes.

Nicole:: Well, I, you definitely bring me joy. I appreciate you and I just can’t wait to see where things grow from here.

But I will say from one old friend to another that, you know, it’s okay to say no or take breaks when you need to. ’cause I can only imagine with so many things you have going on how overwhelming that can be. But I was gonna say I’m proud You have done so, so much. So thank you. And until we chat again,