Small Town, Full Pride

What is neuroqueer? What is it like to find a space where you feel seen for all that you are? What gives us hope for the future?

In this episode, Sarah and Pk sit down with CJ De Barra - author, journalist and marketing person for Undressing Disability at Enhance the UK. We explore what it was like to grow up queer and neurodivergent in rural Ireland, the lengths we'll all go to to find a place that feels like we belong and how it feels when we finally do.

We also talk about CJ's work on Neuroqueerness, disability and what gives them hope for the future.

You can get "Neuroqueer: A Neurodivergent Guide to Love, Sex and Everything in Between" at Waterstones, Blackwells or ask your local indie bookshop to order you a copy!

CJ is on pretty much all socials and you should definitely give them a follow.

Learn more about Enhance the UK and the work they do

Learn more about Undressing Disability

Transcript

[Simply Equality Intro music plays]

Sarah Stephenson-Hunter

Hi, and welcome to another episode of the Simply Equality Podcast, a podcast that seeks to foreground the lived experiences of disabled and LGBTQ+ people. We know it's been a long while since we've done the episode. Apologies. Life has just been life-ing. But we're here with some special episodes, to sort of honour pride month, and we have a fantastic guest lined up for today.

For those of you who have listened to the podcast before, my name is Sarah Stephenson Hunter. My pronouns are she/her, and I'm one of the co-founders of Simply Equality. And in a break from our usual pattern. I've got a co-host with me today, Pk. Do you want to introduce yourself?

Pk Kulasegram

Yes. Although the very temptation - tempting part of me was to say ‘no’. But yeah, I'm Pk. My pronouns are they/them. I am the other half of Simply Equality and very pleased to be here today.

Sarah Stephenson-Hunter

Amazing. So. Yeah. So we've got with us a very special guest. One of those people that, like lots of us, has many titles and roles, but we have with us the amazing CJ De Barra. They are a author, journalist and a marketing person for undressing visibility/enhance the UK, which we'll get onto more of later, but CJ, Welcome.

CJ De Barra

Hi! Thanks for having me.

Sarah Stephenson-Hunter

It's an absolute pleasure. So obviously this podcast, you know, is about the experiences of people who are both disabled and LGBTQ+. So perhaps we can just start by you telling us a bit of your experience and journey of, of that, that intersecting identities.

CJ De Barra

Sure. Yeah. So… I- all of my disabilities are hidden disabilities. I am a neurodivergent, queer, non-binary person. And, so all of my disabilities are hidden. I was diagnosed with attention deficit hyperactivity disorder – just to give it its, long winded title, but it's, ADHD for short – at the age of ten.

I also have Oppositional Defiance Disorder, which comes along with ADHD for some people. And then just to really sort of round off that experience, I was later diagnosed with Generalized Anxiety Disorder as well.

So I have a lovely mix of those three conditions, going on. And even though I was diagnosed at quite a young age, it wasn't really until I was in my, sort of, 30s, I think, before I started to accept any of those conditions, because growing up, neurodivergent and growing up queer. In rural West Cork in Ireland, there wasn't a lot of, there wasn't a lot of support. There wasn't a lot of, you know, information at that time either. So…

Sarah Stephenson-Hunter

You surprise us.

[CJ laughing]

CJ De Barra

I know it's. Shocking, isn't it?

Like.

[CJ laughing]

Sarah Stephenson-Hunter

Just - just for the sake of listeners who haven't come across that Oppositional Defiance Disorder, are you aware of that Pk?

Pk Kulasegram

Yeah. I was. I- it it is… It underpins a running family joke in my family, which is our way of sort of managing Oppositional Defiance Disorder. If someone asks me to do something, I will always say no, and then I will do the thing.

But that sort of just, like, my cheeky get around. But if you would like to explain, CJ,  what it sort of looks like for you and what it's about, because a lot of people may not know about it.

CJ De Barra

I mean, for me, I think it's always been kind of a struggle with authority, a struggle with strict routines and kind of ways of doing things, if that makes sense?

So the more somebody tells me to do something, the more my brain rebels and that um… One on the, you know, the milder end of the scale might be, for example, there's a new TV show out at the moment that everybody's raving about. “What it, what it feels like for a girl” which is based on the Paris Lee’s.

Pk Kulasegram

Yeah, I've seen that.

CJ De Barra

But the more people talk about it, the more my brain's going, “I don't want to watch that.”

[Sarah chuckling softly]

So I'm going to literally force myself to do that this evening.

So that's that's the milder, kind of borderline funny side of Oppositional Defiance Disorder.

But the, the sort of extremes of that are, you know… I've had jobs where, you know –I have I've lost jobs, let's put it that way – as a result of not being able to fit in with, the way that a company is structured or the way that a company, you know, or the various systems that places have, you know, to make their working day function basically. 

[Sarah murmuring agreement]

So it can be, I mean, for some people, they have, you know, lots of experiences with, you know, the prison system as a result of their Oppositional Defiance Disorder as well. So thankfully, I've not had that experience myself. But I do know that it is a heightened risk for people not just with, ADHD, but Oppositional Defiance Disorder as well.

Sarah Stephenson-Hunter

Well, thank you. I mean, you mentioned, you know, growing up in rural Ireland, navigating the world as somebody neurodivergent. I mean, how - how difficult was it?

CJ De Barra

Well, the best, the best way of describing this is to tell you about, a very early experience that I had with being at school and around the time of my diagnosis. So, just to just to age myself, we're going to I'm going to give you the year: 1996. And I went to, an all-girls Irish Catholic school, and, I was taught by nuns just to really set the scene here for, you know, what was a very inclusive, environment.

Sarah Stephenson-Hunter

[Sarah chuckling]

I'm sure it was!

CJ De Barra

Yeah. Oh, God yeah!  So basically, my- my mum fought very, very hard for me to get a diagnosis and for her to be able to get support as well and possibly access to medication. So when she came in to have that conversation with the school - and I mean, you know, I'm under no illusions that, like, you know, I was not the easiest of children given that I had Oppositional Defiance Disorder and ADHD.

And no, there was no such thing as like, you know, the social model, the Equality Act, any of that. All of that kind of framework stuff that I understand today just did not, you know, on a day-to-day in 1996, in West Cork, exist.

And when my mum told the head nun that I had ADHD, she turned around to my mother and said, “oh, she hasn't got ADHD, she just needs a good slap.”

Sarah Stephenson-Hunter

Oh my gosh. I mean, I- I'm shocked, but I'm not shocked.

CJ De Barra

Well. You know, ‘cos people think that if you're diagnosed young, you have like, you know, you must have all loads of access to, you know, all the information and you must have figured out how your brain works over the years. And you, you somehow magically have access to this, this manual of what neurodiversity looks like for everybody.

[Sarah murmuring agreement]

And, actually, what ended up happening was I became so angry about my neurodivergence that I refused to engage with it. I refused to tell people, I refused to, you know, ask for help, ask for reasonable adjustments you know? I didn't even know what those were. I didn't even know it was allowed, you know? So, I talk about coming out in the late 2010s, and, I mean, I came out - I came out loads of times, actually, you know. It unfortunately, it was a long – it was a long process, but, you know…

I think the first was coming out as a lesbian, the second was coming out as non-binary. And then the third thing was accepting and coming out as neurodivergent as well. ‘Cos I–I finally around 2020, when I started writing a book on my ADHD, that was when I finally started telling employers, partners. You know, anyone.

[collective chuckle]

That, well, actually, you know, I am… I'm neurodivergent. And then it took me another two years to be able to say the word “disabled.”

[Sarah murmurs agreement]

Pk Kulasegram

So I guess the question that springs to mind is, what– what sort of changed for you?

You know, ‘cos obviously there wasn’t a magical “This is neurodiversity. And here's how to unpick internalized ableism and now accept who you are, everything is great!” booklet. It'd be great if there was, but sadly not. So yeah. What changed?

CJ De Barra

Oh, I would be first in line for that booklet!

[Pk and CJ both chuckle]

Sarah Stephenson-Hunter

Perhaps we should write that, darn it.

CJ De Barra

Oh my God.

Pk Kulasegram

I had thought about it in fairness. Just writing like a “understanding and accepting you: here are some small steps.” 

CJ De Barra:

So, so in 2020, which was obviously a great year for everybody.

[Sarah murmurs agreement]

Pk Kulasegram

Yeah.

CJ De Barra 

I- I was in a long term relationship and, within the first month of lockdown, I moved into, the I moved into my first home and my relationship ended at the same time. So, I ended up doing most of lockdown alone in this house.

[CJ lets out a short laugh with Sarah making noises of agreement]

With no furniture in it. No, nothing. You know, because all of the furniture deliveries were cancelled. So, you know, my, my mental health wasn't in a - it wasn't in a great space. And I remember thinking, like, you know what? I wonder if my neurodivergence has something to do with the fact that I don't seem to be able to hold down a long-term relationship. 

And, I had struggled with employment as well. So, I mean, I’d kind of struggled with it. But also, you know, journalism's very bitty as it is anyway. So, you know, it hadn't really occurred to me that maybe my neurodiversity, and like newsrooms being not the best environment for neurodivergent people. They kind of are and they aren't, but that's another, you know, novel for another day. But um…

[Sarah lets out a soft ‘hmm’ sound]

And I just sat down and started to research. And the more that I started to research, the more I started to understand myself and that I- and learning about the Social Model, that happened as well, as part of my research because no one had ever told me about it. No one ever said to me, “well, actually, it's not your fault that things are difficult in this respect. A lot of this is because society puts these horrendous barriers in place that you have to overcome, and it's that much harder for you because your brain works in a in a different way to the way that society thinks it should work.”

And that was the point at which, you know, the little light bulb went on. I was like. “Oh!”

[CJ laughs and Sarah murmurs agreement]

Sarah Stephenson-Hunter

And how I mean- how - obviously that wasn't like a magic. “Oh, look, my mental health is certainly now amazing.” But did that have a positive impact?

CJ De Barra

Oh, it really did because I started to find community and I started to chip away at some of the shame, the guilt, the embarrassment, that anger as well. I had a lot of anger around, you know, how I'd grown up and the lack of kind of support and education there was.

So I'm not, as you said, it's not an overnight thing. There was a lot of hard work that went into it. And I also started working for Enhance the UK as well, working for them. It's- I started initially writing blogs and resources on different topics. And that kind of - that massively helped as well because it- I started to really not feel like I was alone. And I started to realise there was a much wider community out there. 

And it kind of, you know, I- I had grown up being the only neurodivergent person ever in the whole of West Cork, you know. And when you consider that the statistic and, this is a UK statistic and to be fair, this is outdated at this point, But, you know, they used to say it was like one in seven people is neurodivergent. 15% of the UK population. So if you use that stat and then you look at the fact of, you know, how many people there are in an average year in whatever school. There was no way I was the only one.

[CJ laughs softly]

Sarah Stephenson-Hunter

No, but it felt like, which must have been as you said, that isolation and and - and struggle.

CJ De Barra

I think. Yeah, it definitely felt like that. And I think it's, it's quite common for those of us who are queer and those of us who are trans and neurodivergent, you know, we're often sort of-  we often feel that way. And we have a lot of, sort of… It takes us a while to find our people and to find our community. I think particularly those of us, you know, that grow up in quite rural settings, and those of us who grew up before the internet as well. So.

[CJ laughs]

Sarah Stephenson-Hunter

I know what you mean, 

CJ De Barra

[CJ still laughing]

Yeah!

Sarah Stephenson-Hunter

Sorry Pk, I- I know I'm the old one on this conversation.

Pk Kulasegram

I mean, technically everyone thinks I'm much younger than I am. Like I did have like pre-internet life. There's like that cusp of millennials when the internet sort of blew up and came to a thing and everyone was like “beware of the internet, it will steal your soul. Don't put things on it. There are creepy paedophiles everywhere.” And like, I grew up with all of that sort of careful management of the internet.

Although growing up in Malaysia, I did get access to faster internet far before the UK did, which was bizarre because it like became- But that's like a different point. But I think, yeah, it does make a difference. 

CJ De Barra

Do you know what we used to do years ago? So I live- I live in or lived in Clonakilty, and that's about an hour by the most rickety bus [all laugh] to the city centre. And we would get on the bus on a Saturday, go all the way up. Spend the whole day, like, you know, doing whatever teenagers do in, city centres. Which is, you know, basically hanging around in small gangs and, drinking copious amounts of Diet Coke. 

[CJ laughs]

But, we used to go to this tiny little LGBT cafe, and it only opened towards the end of the evening right before the bus went. So I would go and I would spend - I would save whatever money I had in order to be able to afford a drink. And I would just go and sit there, and I can still remember what the inside of it looked like. But you would do it just for the half an hour or an hour that you got, and then you'd have to run to - to make the last bus home.

And that - just to be sitting in an LGBT cafe, you know, [Sarah murmurs agreement] 

that was the lengths that we used to go to. because you couldn't stay for the - I mean, first of all, you were underage. And even when you weren't underage, you know, the last bus went home at like half six and if you weren't on it tough.

Sarah Stephenson-Hunter

And I think, I mean- joking aside-  I mean, obviously the internet is very much a double edged sword now, but, you know, I remember when I came out, when I was exploring, I did join some online forums and it helped. Some - some of the information wasn't the best, but it did help you feel like, “oh my gosh, there's other people out there.” 

Yeah. What you were describing there going to that effort for that small point of contact with, you know, a safe space. I think sometimes we forget how important that is. And I think, well, we certainly lost that to the pandemic, didn't we, that community contact. 

CJ De Barra

Well, we felt it immediately with, you know, because for ages now, spaces have been getting smaller and smaller and smaller. 

[Pk makes a hm noise]

And. A lot of our like, we don't have or didn't have, I should say a lot of spaces that were… You know, community centres or cafes or places like that. And then what, what was the first thing to go in Covid? Pubs!

Which for a lot of people, you know, that's, those were our hubs, those were our places. And it's not ideal because, you know, obviously it's alcohol. And, you know, kind of that whole - that whole side of things that goes with that. But even so, you know, it was something and I, I would love to know what the stats are between, you know, the straight community and isolation during Covid and the queer community and isolation during Covid because I bet that for LGBT people, the figures are way higher. 

Sarah Stephenson-Hunter

[Sarah makes a hmmm noise]

Yeah. I mean, we don't have figures, but I mean, we can all agree that's probably the case.

Pk Kulasegram

I think… Again, it's that sort of certain things were compounded. So I know that there were And again, it's the interesting thing is the double edged sword of the internet.

[CJ makes a hm noise]

So, I think there was a lot of push to try and connect very marginalized community. So especially trans youth who were suddenly stuck with family who were not very supportive and who would have otherwise been at uni or something. And so, like people set up, I think there was this, service where you could text them and they would then just like use your correct pronouns for a bunch of time to make you feel seen. And there's also like a radio call-in thing. Not that I think very many people were listening to the radio or even still do.

[Sarah makes a hmph noise]

 but, yeah, I think I guess the thing that sort of struck is that importance of community. And obviously for you, there's multiple forms of community. So sort of what has the role of that been with unpicking a lot of the fun joys of nuns and shame about various asset- like facets of who you are?

CJ De Barra

Yeah, it's that's the thing, isn't it? When you've got like - you've got multiple different sort of - you're part of multiple different communities. Because it's- it's very hard to… Especially with like- you know, one thing that I found with the online spaces during Covid was I would have to choose which part of my identity I engaged with because - and I actually, to be fair I still find this is kind of the case really that I describe myself quite frequently is Neuroqueer, which is that my queerness and my neurodiversity intersect and shape the way that I experience the world, my behaviour and how I respond to things. And I would often find that very, very few things are designed to be accessible to both sides of that. And then, you know, my third side being my non-binaryness [CJ laughs] 

And I would have to make a decision and as I said, still do, about which side of my identity is catered for. Do I go for the place that is, you know, there’s quiet rooms and it’s maybe a bookshop or it's a safe space that I can be in as a neurodivergent person? Or do I go and engage with my queer side, which could mean, you know, I said earlier that a lot of our, you know, a lot of our spaces are pubs and clubs, which, you know, the lighting, or the music may not be accessible for me. I'm probably closer to having a meltdown in a nightclub than I am in a bookshop. 

And then the third thing is, you know, do I go- I mean, there's not there's not very many non-binary meetups or spaces around. So do I go to places that are going to misgender me and, you know, refer to me using terminology that I would rather they did not. 

[CJ laughs and Sarah makes a thoughtful noise]

So. It's yeah, it's- it's a very weird - it's a very weird mix. And I actually just went to Mayo Pride in Ireland and it felt absolutely wonderful because for the first time, not only those three things kind of meshed, but also my rural Irish identity and part of my - my membership of the Irish community, you know, those those things haven't always sat very easily.. Together. And I felt like last weekend, that's the first time it really, really did.

Sarah Stephenson-Hunter

That must have felt… quite significant.

CJ De Barra

I cried, I genuinely [Sarah makes a noise of agreement] cried. I was at -I mean, unfortunately I was at a really good cabaret show, so it was really weird that I was the one crying.

[CJ and Pk both laugh, CJ’s laughter continues longer]

You know, there's a burlesque act on the stage and I'm literally crying.

Pk Kulasegram 

If you can't cry at burlesque act, when can you? 

CJ De Barra

[CJ let’s out a bark of laughter]

I mean look…

[CJ laughs]

But it was - it was so nice because all of the prides that I had been to were either English prides like Nottingham or Manchester, whatever, or they were Pride's in Ireland, but in cities.

So this was the first time that I had been to a grassroots, smaller city and - not smaller city, but a country, basically a rural pride. And oh my God! I just felt so seen because there were so  - it was just the - the jokes the acts, the all of it was so my background, my experiences growing up, you know, it was so… It was incredibly moving. And yes, someone asked me what I had thought of the weekend. And, that's when I started crying. 

[CJ laughs]

Sarah Stephenson-Hunter 

Yeah. Yeah. I mean, you know, it's [Sarah clears throat] Excuse me, I’ll start that again. You know, without blowing our own trumpet too much that's why we have this podcast. Because I think… That intersection of disability and LGBTQ+ identities, there’s – there’s definitely been a growth in focus on that. But it's still- it's still lacking.

CJ De Barra

Absolutely. I mean. 

So I wrote, I wrote my first book, “Neuroqueer”. 

[CJ makes an elgh noise]

Yeah. So I wrote my first book, “Neuroqueer” in 2020.And at the time, there were only two books about neuroqueerness. And so now in 2025, there's still only two books about neuroqueerness!

[CJ laughs] 

But, what was interesting was when I originally took “Neuroqueer” to publishers and literary agents, they were like, “well, what does this mean? Like what? What do you mean your queerness and your, you know, your neurodivergence, are impacted and part of this whole experience?” And I was like, “well, literally just that.” 

Pk Kulasegram 

What it says on the tin. 

CJ De Barra

Yeah. But they didn't want anything to do with it. You know, they were like, I, I got told so many different things, you know. From like, “oh, there's no market for books about ADHD in women”. One publisher asked me to put more… To include more straight men… in the book. 

And, I mean, this is a memoir from, you know... It's part memoir, part research. So, you know, given I'm a lesbian, that's probably not going to happen. The inclusion of um…

Pk Kulasegram

Straight men. 

CJ De Barra

[CJ laughs]

Cisgendered straight or, you know, cisgendered straight men. So… 

But interestingly enough… I actually in 2025, had a publisher approach me about doing a sequel, and this time they were like, “actually, no, we would like you to do – it - we want it to be neuroqueer.” 

That is how much things have moved on in the space of, what, three years? So there may only be two books now, myself and Dr. Nick Walker is the other person, his book “Neuroqueer Heresies.” 

But there will be a third one coming up. But so - that's incredible as a point of how far we've come as a community. 

Sarah Stephenson-Hunter

Absolutely. I mean, if we can delve [Sarah’s voice cracks and she clears her throat] God, can’t tell what’s going on with me today. 

I mean, absolutely, if we could delve a bit deeper into that, whole… intersection of, you know, being neurodivergent and being queer and -obviously, Pk, you can jump in on this if you like- there's a lot of discussion around why is that? And why is there quite a high proportion of queer people who are neurodivergent and vice versa? I mean first- firstly CJ have you got any thoughts or comments on that?

CJ De Barra

This is the number one question that I get asked. Because I - basically I did what most authors do and went out on a book tour when- when the book came out. I'm still on the book tour. I suspect it will never end.

[All chuckle]

And… I’m Not sure I want it to either. Actually, it's kind of fun. 

But the number one question that I get asked is: why are there so many queer people that are also neurodivergent? And my answer is always the same: I don't know. And the reason that I don't know is because those stats don't properly exist yet.

If you look at- and this is something I'm finding in my research for the for the sequel at the moment- if you look at the majority of, particularly ADHD and autism studies, have a look at the date that these have all been produced and I guarantee you it is between 2021 and 2025. We are desperately playing catch up on all of these type of stats, and it is absolutely ridiculous that we are in this- we don't have… We have no information on the overlap really between… Well, I mean, from a why perspective. And it- it's- it's ridiculous!

And the other thing is it's- it's costing us as well because when support services are being designed; resources; education; all of those things, and they go looking for these stats, they assume that we don't exist because we are not represented in the proportion of studies that are out there. You know, these books that are written by academics. You know, we are very, very obviously missing. 

And there is also even less when it comes to trans and non-binary people and the stats around, neurodiversity as well! 

So it's this, this horrible circle or cycle that keeps continuing, continuing, continuing. And it's going to mean somebody is going to have to take one for the team and do a massive amount of research and study and survey, whatever it takes ‘cos I'm very much a journalism research person that does not do numbers. So please someone else do it.

In terms of like what my suspicions are as to why there is an overlap between us. I mean, for me, I grew up… You know, I grew up thinking and being a different way to everybody in my class anyway, you know, everybody in school. And… 

So it made sense to me that, you know, queerness made sense to me. Polyamory made sense to me. All of these different things made sense to me because I was like, well, you know, society’ll have you believe that the way that I think is wrong, the way that I behave is wrong, when actually it's just part of how my brain works. 

So. It's almost as if…

[CJ laughs and Sarah makes a hmm noise]

So from a young age. I mean, it also really helped that, I, I liked women very much.

[CJ laughs]

 So…

Pk Kulasegram

Women are great.

Sarah Stephenson-Hunter

I agree. No disrespect to to-to-to men listening to this, but hey we have a bias. Women are great.

CJ De Barra

It is true. 

[CJ laughing]

Sarah Stephenson-Hunter

I mean, Pk have you got any - and I know we've had guests on the podcast before talking about this- but have you got any particular thoughts on that whole issue? 

Pk Kulasegram

I have lots of thoughts. But I also have the- I am also like a numbers autistic. So I really enjoy the maths. And one of my frequent frustrations in terms of statistics and analysis is- people act like they're sort of devoid of emotion. And I think one of the biggest barriers towards getting accurate statistics on the overlap between queerness and neurodivergence is trust. Both communities famously not a lot of trust in those people doing that kind of data, and especially in a trans context where - I remember time for top surgery, I was really, really worried that having an ADHD diagnosis would be used against me. 

And I had it in Spain. And when I told the Spanish doctor he sort of looked at me and was like “you’re trans?” And I was like, “Yes.” So “okay, that's it. Fine. Like, we assume you're competent and you're a whole arse adult who can make decisions about your body.” And it was such a refreshing experience that was so unlike everything I had experienced in the UK up until that point. 

And I think when we look at trying to get these very, very necessary, very relevant statistics, so we can even begin understanding the scope of what at the moment is just anecdotal. “Most of my friends are queer and neurodivergent.” There seems to be a significant overlap.

[Sarah makes a hm noise]

To something that we can actually use, we do need to address stuff like the NHS putting in, “oh, we're going to diagnose people with autism and ADHD before they can access gender affirming care.” And knowing that on the face of that, that's actually deeply problematic, because the reason they're doing that is to deny care, not to support both facets of someone's identity. And I think that needs to be addressed. 

And yeah similar to CJ, it's that whole when you exist outside of what everything society tells you you should be, I think you're more likely to be like, well, if this is bullshit, why isn’t this also bullshit? And so, you know, in terms of polyamory and gender and being like, oh, well, like something that held me back was the idea of, “oh, being a womanhood is like supposed to be uncomfortable and no one really likes this anyway.” And so I was like, “oh, this is just like normal, that it feels so unpleasant”. And then I sort of met more people, and I was like, oh no, it's not normal. This is what's going on. 

And so I think it's just… 

When you're on the outside, especially when you have multiple forms of outsiderness, you're more likely to be like, well, why… That doesn't fit. So what else doesn't fit and isn't real? 

Sarah Stephenson-Hunter

Yeah, absolutely. I mean, related to that, CJ what do you think about- you know, there’s a lot of discussion about whether being neurodivergent is or isn't disability. Well, I guess that's a similar discussion. But again, have you any thoughts on that? 

CJ De Barra

I do. It took me until 2020,  to really accept and become comfortable with my neurodivergent. And then another sort of two years for me to start using the word “disabled” to describe myself. And there's a couple of reasons for that. 

And the first is we all know, you know, that there are laws in place with the Equality Act, all of that- or we should do! But the Equality Act doesn't, you know, help you on a Friday night where you're absolutely struggling with the journey that you are on as a human being. And, you know, you feel those very physical barriers or emotional barriers or, you know, organisation or whatever it is. 

It's- it's a very personal journey getting to grips with using the word “disabled” to describe yourself, because there is such a huge level of vulnerability that comes with that. 

And, I grew up with a very, you know, rigid idea of- because, you know, it's, just there wasn't a lot of information and education around disability when I was growing up. So, we were very much given that rigid idea of, you know, if you are somebody that is physically disabled, that is disability. Neurodiversity is just, you know, it's an abstract thing. It's not a disability. You know, you have to be like a wheelchair user to be disabled, which as we know now is absolutely not the case. So that's part of why it took me so long. 

I do know that within the ADHD community, there's very… conflicting sort of ideas on this, and it's very hotly debated. And certainly when I was interviewing people for my first book, I always think of this - of these two people when it comes down to this debate. 

I interviewed one guy who was a cisgender white CEO type, you know, so very suited and booted, you know. And I remember saying- asking him how he felt about it personally, and he was like, “oh, I don't consider it a disability. I'm not disabled. I'm, you know,” And a couple of days later, I interviewed somebody who was a trans artist. So, you know, polar opposite experience to the previous person. And they said, “well, absolutely, I am disabled by my ADHD” 

And there's loads of factors that are at play here. And there's, you know, there is gender, there is class. There is, you know, I mean, that CEO guy, I, you know-  I'm making an assumption here. But to be fair, I'm assuming that if you are a CEO, you've got a fair amount of money to be able to pay to have a certain level of those barriers removed that the trans person who's working on an artist and, you know, I don't know if they had any other, income. But I know about the art income. So, you know, they they're not going to be able to afford to do the same thing. So, you know, there's it's a very, very, very complex thing. 

And I'll accept - I'll accept either answer from people like if- if - you know, I didn't turn around and like bite his head off for saying, “you know, I'm not disabled”. But I didn't say the same - you know I didn't say anything to the artist, you know, because it's a personal journey. 

Everyone has the right to define themselves how they want to. As long as you are, you know, aware of the law and what your employer should be doing for you and what you know, society should be doing, you know, in terms of your rights, that's different. But in terms of how you define yourself, that is absolutely, entirely up to you. 

Sarah Stephenson-Hunter

Yeah, absolutely. I mean, I often… I was going to say I'm not neurodivergent. I think the jury's still out on that isn’t it Pk? Im just - it’s an in joke between Pk and I, you know, but I'm not neurodivergent. And obviously I, I am. 

[Sarah clears throat] Excuse me, I am blind. I am trans, and I always say that, you know, the impact is context specific. For me on a day-to-day basis it's my blindness that causes me the most sort of practical difficulty, challenge because we live in a sighted world, etc., etc. but and - certainly not at the minute- that doesn't take away from the difficulties and issues and challenges of being trans. But it's very context specific, as I think what you just said is, you know, you know, whether or not you call or regard ADHD, autism as a disability, it still can be disabling. Shouldn't be, but it but it is because we live in a neurotypical world. 

CJ De Barra

Absolutely. 

Sarah Stephenson-Hunter

Again, Pk, I don’t know if you want to add anything? 

Pk Kulasegram

Yeah. I think also the thing that really resonated was when you were talking about it's- it's a personal thing. And for me, the issue with the debate is that you're making something personal applicable across. So I tend to take the scope of everybody as welcome, whether or not you choose to claim it is your own thing. But we shouldn't be deciding for someone what counts and what doesn't count. It's about - like we're always going to be stronger together, and we have enough systemic gatekeeping that we don't need to, as communities, also enforce gatekeeping. 

Sarah Stephenson-Hunter

Yeah, absolutely.

CJ De Barra 

Yeah, I really agree with that because there are… I mean, it’s the- the same argument isn’t it? With, you know, oh, medical diagnosis versus self-diagnosis which, which counts, which doesn't count. Sorry, but both of  them are, you know, in a -  I mean, christ, we're in a… Look at the NHS at the moment, nobody's getting a diagnosis that they need any time soon. Which is, you know, I mean- the waiting time here in Nottingham at the moment is up to ten years for, I forget whether it's autism or ADHD at the moment. So how - how are you going to make somebody wait ten years and then tell them that self-diagnosis doesn't matter and isn't valid? You can't, you know what I mean? 

It's, it's a, it's a very personal journey. And how you define is very personal. And you're- you're right. There's lots and lots of gatekeeping along the way. And that's just another one that is particularly relevant to the neurodivergent community at the moment: the diagnosis versus no diagnosis conversation. 

Pk Kulasegram

Yeah. That's not even getting into the biases within those diagnosis diagnostic processes, like the fact that the autism assessment in the UK is the same for adults as for children, with heavily cisgender white boy bias for a lot of contexts and equally they're very valid reasons, people don't even pursue a formal diagnosis like my sibling has an unofficial official diagnosis of autism because they wanted to move to Australia and Australia, if you have a formal diagnosis, you can't emigrate because you're a drain on resources. 

[Sarah makes a hmphing sound]

So they're like… And similarly, with ADHD, there are countries where you couldn't emigrate unless you are specifically on- on ADHD meds and it's managed by medication. Right? 

And again, like it's that whole systems of oppression, ableism underpins all of it. So like when we tackle ableism, make a world better for everyone.

But that doesn't magically erase real struggles and issues like ADHD services here. There isn't one that they've closed that now as have they done with autism assessments for adults because the waitlists were just too long. 

Sarah Stephenson-Hunter

[Sarah makes an mmhm noise]

I mean, one of the one of the comments, one of the things we often get in our training, CJ, is people saying, “oh, well, everyone's - everyone's neurodivergent these days and everyone just wants to get a diagnosis. And it's a bit of a bandwagon.” Again, I'm guessing you do, but do you have any thoughts on that?

[CJ laughs]

CJ De Barra

One or two.

[CJ laughs again]

Sarah Stephenson-Hunter

I thought you might.

[CJ laughs]

CJ De Barra 

Yeah. We, we get this a lot, in the training that we do. You know, this idea, this. “Oh, everyone's a little...” It's like, “well, I, I get where you coming from” and I know and I'm, I - well, I hope it's coming from a good place of, you know, wanting to make somebody feel a little bit more included -  when in actual fact, when I hear that, it just makes me feel a little bit like, you know, “It's not - it's not real, is it though?” 

[CJ laughs with an edge of exasperation]

You know what I mean? 

I- it – it’s sort of like - it sort of sanitizes all that bad stuff that I go through as a neurodivergent person, and it sort of glosses over it a little bit. 

“Oh, well, you know, it's, it's… it's…” Well it's not, it's not! We do have neurotypical people. They do exist! you know? 

[CJ chuckles softly]

It’s the same with straight people and queer people. It's that you can't just go, “oh, everybody wants to be queer and trans and. Oh at the moment! Everyone’s trying-” 

Pk Kulasegram

‘Cos it’s so much fun. 

CJ De Barra

Exactly that! Like we're just over here - I mean, to be fair, it is fun, though. 

[Pk chuckles and then Sarah chuckles] 

Pk Kulasegram

It is. 

CJ De Barra

Also at the same time, you know, come on now. 

But it seems to be this thing at the moment that everyone enjoys - and by everyone, I mean the media. That pains me as a journalist to say that, by the way, immensely pains me, but I never thought that I would get to see a situation where a, you know, sort of mainstream media newspaper feels justified in running a cartoon of Hitler and talking about ADHD within that cartoon. Thanks for that, the Spectator. 

[Sarah makes a hmmm noise]

And, you know, it's this very much this thing at the moment where it's okay to, you know, beat down on people who are trans and people who are neurodivergent, and to dismiss both, in a way, as a trend. 

In actual fact, what I think - I mean… We all know - all of us here know -that trans people have always existed. Neurodivergent people have always existed – goes without saying but, for those that need to hear it…

But I think the reason that we're seeing a lot more of it at the moment is because people are watching TikToks, they are looking on YouTube, they are doing the research. Look at how many more books there are that have come out in the last four years. And that's a wonderful thing! If people are having - are being able to recognize themselves. I mean, yeah, I think it's come a lot with visibility and that's a good thing. 

Sarah Stephenson-Hunter

Hmmm. I mean, we've talked a lot about the challenges, difficulties, which are real, they’re valid. And I think, if you're part of the neurodivergent, LGBT community, you know, we- we send strength and solidarity to you all listening. 

But if you flip that… Okay, what- what can we do? Obviously Simply Equality, we do training around disability and LGBTQ issues. You work for Enhance the UK, which is a great organisation. We've actually had your Chief Exec on this podcast, that was a few episodes ago can look that up - Jennie Williams. She's - she's a wonderful human being. It was a great interview with her, we love the work of Enhance. But what would you say are some of the key things that employers can do to help make their worlds more neuro and queer inclusive? I know, big question! But give us a few- give us a few answers. 

CJ De Barra

I think there's this, expectation that employers have to do loads of fancy stuff and loads of expensive bits and bobs, and you have to get in all the - that all the things. When, in actual fact, the first place that I would tell any employer to start is to just have those conversations, to actually talk to Neurodivergent people who work with and for you. And to actually find out what that means for them individually, rather than just applying one size fits all policy to reasonable adjustments. 

You know, because something - we're all so incredibly different, like my ADHD looks totally different from the next person, the next person, next person.  And then you add into the mix that, most of us, you know, have more than one condition as well. So, I think the prevalence of ADHD and autism is like 40% of. I think it’s  40% of autistic people also have ADHD.

Pk Kulasegram

80 – they reckon.

CJ De Barra

They reckon - they reckon 80. 

Pk Kulasegram

Yeah. 

CJ De Barra

So it's it's wild. It's absolutely wild. 

So it's going to look different for absolutely everybody, you know. But I also think as well - don't just have that once-off conversation; keep having those conversations because reasonable adjustments that are put into place in 2022 are going to look so different in 2025 because of changing technology, but also, my needs will change. 

You know, one of the, one of the ways in which my disability has changed, in, you know, in the last two years, I am now experiencing perimenopause. And, I actually have early, perimenopause is I started at 35. So HRT is, you know, not only a godsend, but, a big part of my life. But that has totally changed how - it's affected my balance, my brain fog, my memory, you know, all of these things. So, I didn't have to talk to employers about that back in 2020. I do now!

But if you don't consistently check with your employee what that's looking- What – what are things looking like for them, how you can support them as they progress, then those barriers that they, you know, that you - sort of - removed in 2025 are going to start creeping back in in different ways. 

So those are - that would be my initial, my initial, recommendation for any employer is start small and and grow it out from there. You know, you can work your way up to quiet rooms. You can - you can work your way up to, you know, bringing in things like Grammarly and all of that. But you've got to know first what your employee actually needs. 

Sarah Stephenson-Hunter

Hm. And what about somebody who's listening to this, who is neurodivergent or thinks they might be but, you know, given what we said about length of time for diagnosis… Perhaps thinking back on your own experiences, CJ, what would you just say to somebody listening who's having those struggles, facing those challenges in the workplace?

CJ De Barra

I would say what helped me the most was learning what my traits look like. So, learning what my ADHD, Oppositional Defiance Disorder, and gene- I have to find like a nice word that encompasses all three of those that just, you know, isn't three long, massive, long winded condition names. But, my neurodivergence, I had to figure out what that look like for me because I can't ask for help if I don't know what help I actually need. So that took a lot of soul searching, a lot of research. 

You know, shameless plug for, Undressing Disability. But we do run, support services called “Love Lounge”, where you can come and talk to - it's a user-led service as well. So everybody there is- is disabled and you know, has- have a range of different backgrounds. But, you know, it's- it is our responsibility in a way to do that research and to get to grips with what it looks like for us. And it is life changing when you do. 

So, whether you go for a diagnosis or you don't, I would say do look at what it means for you. 

Sarah Stephenson-Hunter

Yeah. And just to just another shout out to Undressing Disability. I am one of the Undressing Disability people as well. So, it's a great service. Do you go -  do go check it out

CJ De Barra

So Undressing disability is a campaign from Enhance the UK. And it was created by, Jennie, the wonderful Jennie that you mentioned earlier. And it aims to sort of share education, information and different campaigns around sex, love and relationships for disabled and neurodivergent people. 

We also do- we do workshops, we do talks, events, all sorts of things. All aimed at getting these topics into- whether it's, you know, into the media or actually, like educating people on different topics. You know, we've- we've done events on menopause. We have an event coming up on kink for disabled and neurodivergent people. You know, we- we really do tackle a lot of different subjects, but it's so badly needed. 

[Sarah makes a noise of agreement]

Yeah, you can find Undressing Disability on all of the various social channels, especially Instagram and, yeah, that’s it really.

Sarah Stephenson-Hunter

So we will put some links in the show notes and just to say Undressing Disability, it doesn't specifically focus on LGBT/queer identities, but it's very queer inclusive, isn't it?

CJ De Barra

Absolutely! I mean, it's- it's very - it's very, very open. Very, very open. And a lot of us that have worked on various campaigns over the years have been queer. And, I mean, I'm queer, non-binary. And I've been- I've been here five years now. 

[CJ laughing, Sarah chuckling and murmuring noises of agreement]

Sarah Stephenson-Hunter

As with all of our guests, we- there’s d so much more we could talk about! We're coming towards the end, but I'm just wondering, from your experience, what would you say you've learned through navigating the world as being somebody who’s queer and neurodivergent? 

CJ De Barra

I think the biggest thing that I've taken away from it, and learnt from it, is that not everything has the – is that I don't have to fit into everything. So I used to, like, beat myself up quite a bit for not being able to, like, go to the queer nightclub and have a fantastic time. But as I've been writing the -  my sequel on kind of, you know, queer dating and relationships, I've kind of been questioning, like, my experiences in these spaces a lot. 

And actually, you know, the uncomfortableness that I was feeling at that particular time, I kind of like, pushed it down. And where when I'm queer, I'm supposed to enjoy, you know, the sort of huge nightclub with, like, thousands and thousands of people and-

[Pk makes a blegh noise.]

 You know, I'm like, yeah –

[CJ, Sarah and Pk all chuckle] 

I'm supposed to be here, right? This is why 

[Sarah chuckling]

what - this is something to look forward to when we come out. Right? 

And then actually, I wish that, you know, I had known - my younger self would have known - that actually, it's okay not to fit in with that, it's okay to need to go somewhere quieter. You know, because I used to spend a -the majority of my time in the- in the smoking area. And that wasn't just because, you know, that's where all the chat happens, and, you know, like, lifelong bonds are formed in the smoking areas of pubs across the land. But it - I realised then that it was actually because that's a quieter place. It's usually outside. So it- at night it's darker, there's less fluorescent, or there should be less fluorescent light. And, you know, I did end up smoking as a result of that, but… yeah, I think that would be the one thing that, you know, I've taken away from - all of it really - is to do what feels right for me and to do what I need, as opposed to feeling pressured to do what is the quin- the quintessential stereotypical queer experience thing, because most of it is designed for neurotypical people and it's designed -most of it - for gay men.

[Sarah and Pk make noises of agreement]

Sarah Stephenson-Hunter

And again, no disrespect to gay men listening to this, but that is- that is the reality that a lot of things are designed by and for those sort of more speech marks, “normal” types of gay person. 

CJ De Barra

But this is it. Like I mean no disrespect by that because, you know, it's- there needs to be spaces for absolutely all of us. And the problem is when there is, you know, when all the spaces are geared towards one of us, not, you know, and then there are other parts of the community that are struggling to find, you know, accessible spaces or they're struggling to find trans inclusive, you know, trans nightclubs or whatever it might be. You know, that that's where it becomes an issue rather than, oh, you know, somebody having something. It's we all need something. 

Sarah Stephenson-Hunter

Yeah, absolutely. 

Pk Kulasegram

Yeah. It reminds me of that statement, which is basically when you focus on inclusion, diversity is the byproduct rather than focusing on diversity. So when you're thinking about building spaces that aren't just for generally a cisgender white gay man, and no disrespect, if you are that person, great. But like we need spaces that are not just for one type of queer, because also there is that thing of if you do not see your type of queerness, neurodivergence, disability reflected in the world around you, then you get isolated because you think, “well, this is supposed to be my space. And I can’t even fit in here so what hope is there?” 

Sarah Stephenson-Hunter

Yeah. Representation – representation really does matter. 

CJ De Barra

To finish - to sort of finish on a really sort of positive note with that though… I do feel a lot of hope around Gen Z, because the majority of Gen Zers that I do speak to, you know, they don't drink. They're having meetups, you know, for various different craft things, or they're going running or they're doing, you know, they're doing an interest. They're not just going, okay, we're going to have like, you know, a feed, a pint in the local pub, which - I'm sure, you know, maybe they are, I don't know. But the ones that I've spoken to that do make me very hopeful are the ones that are organizing events that don't necessarily centre around alcohol.

And they are taking into account, you know, accessibility. They are looking and holding the venues to account as well. You know, they have WhatsApp groups where event organizers are going, “has anybody had any dealings with this organizer or this venue? What are they like for, you know, wheelchair access or neurodivergent friendly spaces?” You know, all of these things. So that really does bring me so much joy and hope for the future.

Sarah Stephenson-Hunter

Well, that's a wonderful positive note to end on, CJ. Thank you so much for your honesty, your openness. It's been an absolute pleasure. And as I said, we could have- we could have chatted for hours! Where can people find you if they want to find out more about you and your work and what you’re up to? 

CJ De Barra

Well, in a shameless plug, you know, I do have a book out there in the world which is-

Sarah Stephenson-Hunter

Tell us about it. Go on. Where can people get it? What is it?

[CJ laughing]

 No, it’s fine! Plug a- plug away! 

CJ De Barra

Okay, so…

Pk Kulasegram

That’s what this is for.

CJ De Barra

Any of the major bookshops. You can also find it at many of the wonderful indie bookshops that we have across the UK as well. They are welcome to order it. It's called “Neuroqueer and Neurodivergent Guide to Love, Sex and Everything in between.”  

You can also find me CJ De Barra on – sadly -  on most of the social medias. 

[CJ laughs]

You know, whatever. Yeah. I'm terminally online, basically. You can also find Undressing Disability on- again- on all of the social media in particular, Instagram. And you can also find details about the Love Lounge through our social media, but also at our, website as well, which is EnhancetheUK.org and yeah, that's- that's where you can find me.

Sarah Stephenson-Hunter 

Amazing.! Well, again, thank you so much. It's been an absolute pleasure. And yeah. Good - good luck with everything. 

Pk Kulasegram

Yeah. Thank you. 

CJ De Barra

Thank you for having me.

[Simply Equality outro music starts playing]

Pk Kulasegram

Thank you for listening to this episode of Simply Equality Podcast. Please feel free to like, subscribe and follow so you don't miss an episode. And you can check out our existing back catalogue. 

If you're looking for more ways to support Simply Equality or work with us, check out SimplyEquality.com. And remember, you'll always be too much for someone, so you might as well be yourself. Be safe out there.