This is the transcript from Tranvox on disability, neurodivergence and transness, which can be found here.
Gillian: Hi and welcome back to the next edition of Transvox. No Jenny today but sitting in front of me is Katie Munday – so welcome!
Katie: Hello, and thanks for having me again.
Gillian: So, Katie tells us a bit about yourself cause you and I met on a previous podcast when we talked about the Whatever it Takes cancer project, but I thought it would be brilliant for you to come back and talk about yourself for all sorts of different reasons. So give us a little pen portrait of who you are and what you do?
Katie: Oh my goodness, this is when I have an existential crisis of who am I and what do I do!? I can’t remember anything! [joking] So, yeah I’m Katie Munday and use they / them pronouns , I am a trans, queer, fat, mad, disabled and multiply neurodivergent person. And I do a lot of consultancy and training, youth work and coach wheelchair basketball. I do a lot of things on disabled experiences basically, and how do we make disabled peoples live easier, better, more appropriate, more equitable. Which is why I am involved in the cancer service research I’m involved in, which we were talking about the last time we were here. So, that’s me in a nutshell. I have a little boy and husband and just got my PhD candidacy. So, I’m spinning about eight million plates because that’s kinda where I thrive, maybe?
Gillian [joking]: Having ADHD would be very handy now!
Katie: Yes! Productive procrastination – so if I have 8 or 9 different things going on at the same time then I won’t necessarily priorities the thing that needs to be done first but maybe I’ll do this thing instead – it’s still productive.
Gillian: Yes. So, let’s start with the doctorate – what’s the Doctorate going to be about?
Katie: My doctorate will be at university of Portsmouth and will be on trans and gender diverse Autistic people’s experiences of health and social care inequity in the UK.
Gillian: Wow. Well you’ve got plenty to go on there haven’t you.
Katie: So, I did my master’s in research on trans and non-binary Autistic peoples narratives because there is a very large overlap between being Autistic, ADHD and otherwise neurodivergent actually, and being trans. And there seems to be a lot of research on this around “oh there’s an overlap” or more medicalised words like prevalence and co-occurrence but not necessarily enough work which involves trans Autistic people and definitely not enough work on “okay so this is actually quite a large group of people within two minority groups – then what can we do to make things better for them?” So, that’s what kind of guides a lot of what I do.
Gillian: It’s interesting cause I’ve read this research and we’ve talked about it a lot on this podcast. Is there any reasons why there seems to be a high incidence of neurodivergence across the trans population and wider queer populations?
Katie: Depends on who you ask! Unfortunately, trans people and Autistic people are still highly pathologized – we are considered to have something wrong with us, we aren’t doing something correctly, we have an empathy disorder and various other things said about both sets of people, actually. So, in some research is very much “well this pathology exists and therefore that feeds into this pathology” which is not appropriate, real or helpful to anyone at all. Outside of that I have heard other Autistic trans people talk about “well if neuronormativity doesn’t fit and the way society stands now, I don’t fit in that box – what are the other boxes that I don’t necessarily fit into?” If it is socially appropriate to dress this way, look this way, hold myself this way, talk this way and I don’t do any of that – what does womanhood or manhood look like – they’re both culturally bound anyways. What does that mean if you live outside of that mainstream culture anyway as an Autistic person?
Gillian: Interesting – so, obviously our podcast focuses mostly on the trans+ community but it’s nice to talk about other areas and unpack a lot of that. So, for those who haven’t heard the term “neurodivergence” or “neurodiversity”, what do they mean?
Katie: Neurodivergence was a term coined by Kassiane Asasumasu many years ago now and it basically encompasses anyone who doesn’t fit into neuronormative, neurotypical or neuromajority standards. Anything autism, ADHD, dyslexia, depression, anxiety, stroke, cerebral palsy, down syndrome, OCD. Mental health conditions. So, that’s what I mean when I say neurodivergence – those of us who diverge, neurologically.
Gillian: It’s interesting you put depression in there – why would it fit under that umbrella?
Katie: Because mental health conditions are not considered – well I supposed it depends on where you put neuronormativity. And neurotypicalism because although a lot of people have depression and anxiety it’s not – there’s a lot of things around neuronormative and the “ideal” which is not brilliant or helpful. And mental health conditions would be outside of that, not to mention the people who have both mental health conditions and spina bifida or whatever else, they’re co-occurring things a lot of the time.
Gillian: Can I come back to something you said earlier if you don’t mind? So, for those who again don’t experiences some of these things, such as autism, how is that? We can see how it manifests, but how is it to be an Autistic person?
Katie: It’s different from person to person, of course.
Gillian: One you’ve met one autistic person you’ve met one autistic person.
Katie: It’s, for me personally, and this goes with ADHD as well, it’s being aware of everything and not being able to filter out everything. Then with my ADHD it’s being aware of everything going on in my brain and not being able to filter that either. My biggest thing is not being able to pick apart auditory processing – everything all at once, that’s what it feels like to me.
Gillian: Interesting and you often see this manifested as people shutting down sensory inputs, you might notice that, or people processing quite deliberately. And I think often you can see how people have defined things like “slowness” and “lack of intellect” or being considered “highly strung” you can see how these words coalesce around people with neurodivergence. When actually we can strip those words away. How do we create inclusive cultures to get the best out of these people? These people are everywhere and it’s best that we get the best out of everybody so why wouldn’t we improve their lot? So, broadly how would we create situations and spaces where everyone can be included whatever their neurology?
Katie: That was a lot of questions!
Gillian [laughing]: It was wasn’t it? You can choose one.
Katie: I think I spoke about this last week at TransActual – give people choice, we all benefit from having choices. So, if you’re running let’s say a trans support group, community group, support group whatever, first of all be aware that there are likely to be quite a lot of neurodivergent people there. And even if there’s only one or two of us or none of us actually the things that benefit us would benefit quite a lot of people and they are usually easy to do and don’t cost much.
So, knowing what expectations are before you go into a room, how many people there will be, is there a breakout space – for when loads of people are talking I can go there instead of exploding at everyone, and get myself together. Expectations, choices around communication and how often someone might want to communicate and whether they don’t want to talk at all, or maybe they use sign. Even when organising events, some people prefer emails, text messages, some of us even do phone calls (not me!). Sometimes people ask these questions expecting a list of tick box things and it’s not that simple, but choice is a really, really good place to start. It gives autonomy to people who are coming into your spaces and makes your practice better – win-win!
Gillian: None of the things you’ve said would be detrimental to someone who isn’t neurodivergent. It’s kind of good practice and common sense because actually you can’t look at someone and decide or diagnose someone and their conditions. A challenge has been created from nowhere – this need to diagnose people – which goes back to psycho-analytical theory in psychology, and I think a lot of people who have gone through training have been given this really flawed toolkit on how to look at someone understand them and diagnose them and then contort themselves into a place where no one is happy because no one is getting anything. Instead of creating a society in which conversations are had which are actually productive. It all seems like common sense to me, but the problem is that common sense isn’t all that common!
Katie: I’m not reinventing the wheel by saying these things – I’m not some super genius, they’re just some usual standard stuff that I definitely see works really well in youth work, so why wouldn’t it work when applied to adults?
Gillian: So, I know you’re a consultant on this kind of area – what kind of consultations do you get involved with?
Katie: I’m currently working with another trans organisation around accessibility and improvements for their voluntary team. I’ve done things with the university around accessibility for their graduations – so mine is mostly around accessibility within healthcare or education. That’s a lot of what my consultancy is around.
Gillian: Fantastic – and you did mention that huge, long list of things that you started with earlier, and I can’t remember it all, but you did mention disability as well. As I spend more time in the trans world we don’t talk about disability that much especially physically disability. I’m asking a crass question on purpose – so bear with me – is that because disability has disappeared? Why have they disappeared in the debate?
Katie: I don’t think Disabled people were ever included in the debate. I think there’s the cycle of Disabled people – or visibly Disabled people (however you want to describe that) are not actually able to go out of their homes and engage in the community in whatever aspect that might be. I definitely see that in sport – I coach wheelchair basketball and sometimes people come to us in their 20s having not played any sport before because their schools ‘tried’ to involve them in sports or just said to them “you know what you have spina bif you’re never going to be involved in sport” and now some of these people play premier division wheelchair basketball! And you see this in all areas of society which are supposed to be accessible.
People talk about equality diversity and inclusion and it’s complete nonsense. A lot of Disabled people can’t or don’t leave their home and can’t find a social group – and then society thinks we don’t exist because you never see us or hear from us. I feel that is relatively similar with trans community – we kind of look after our own interests because there is a part of me as a trans person that just says “no one outside of the trans community and my husband cares about me being tans and what that means for me, let alone issues, life experiences of trans and gender diverse community” so if people stop making things accessible for Disabled people, we don’t turn up and then people say “you don’t see Disabled people any more” no because you haven’t made spaces accessible for us so you’re not going to see us out and about.
Gillian: It’s really interesting you say that – it’s the same with bathrooms if there is a hoo-hah about it I’ve been told to use the Disabled bathroom. That is quite casually thrown into the conversation, and I was quite like “what would people with disabilities being saying if they are now sharing, y’know?” that’s quite an ethical and moral conundrum.
What do you do here? Of course there’s this thing about trading rights. Why would you be happy to take the disability sign off the door and share it with a genderless image? It’s almost like “here are all the minorities we are collecting down the corridor out of the way”
Katie: It’s like “oh we already had to make effort for this group and now you want them too!? Well why don’t you just use the same loo?” that’s what it feels like to me – “haven’t we done enough with one accessible toilet with no toilet paper in and we’re going to hang up the emergency rope cord every time we go in there, so if someone does fall off the toilet they can’t call for help. Isn’t that good enough for you people?”
Gillian: It seems staggering in this age that disabilities would not be more in the mainstream. Do you think – there’s always fuss about people parking in Disabled spaces. The more I think about this the more it makes me think there are lots of Disabled role models and there are some buildings which have been refitted to take wheelchairs. Do you think that we have become blind to disability because we are treating people equally?
Katie: I don’t know if that’s lived experience of people, though. We talk a lot about these things at wheelchair basketball as you can imagine because lots of our players are wheelchair users for lots of different reasons. The other person I coach with is a full-time wheelchair user – he gets people staring at him getting out of his car “I just wanna go to the shop mate” staring at him because he can hop on one of his legs to get his wheelchair out of the back of his car. And then on the flipside of that – me as a younger person (I’m in my 30s but I look about 12).
Gillian [teasing]: I’m quite jealous.
Katie [sarcastic]: It’s the autism!
Gillian: I might get myself a portion.
Katie: Yeah- you should get a bit! So, getting out of my car they look at me and I don’t have any mobility aids and people just stare at you as if “what are you doing there parking in a Disabled parking spot?” I say that about parking, but you can imagine throughout the day these things pile up – just allow Disabled people to go about our business to go about the same tot everyone has to do all day every day.
Gillian: Yes, but it is funny how much we take for granted these days. Like all the pavements being dropped for wheelchair access but there is still a three- or four-inch gap so getting up that is still a challenge. It’s like we’ve built in some processes, so we don’t think about them anymore. Which is great for accessibility, but I wonder how you cope with the perfect trifecta of trans, disability and neurodivergence. What does that mean in your life? How does that practically pan out for you?
Katie: For me… interesting! I think the biggest thing for me is because I can access quite a lot of things physically which I know a lot of people can’t, so there is a lot of privilege there for me as well. But there will be spaces – I am openly neurodivergent with everyone, you’re going to talk to me for two seconds and go “yeah, there’s something going on there” which is totally fine but I’m not openly trans with everyone. Like that for me seems to be – I appreciate that I am talking on a trans podcast and being very open about things – but there are parts of my life, where if people don’t follow me on social media and stuff they won’t necessarily know.
Gillian: Well, yes it’s your business so you share with who you want, really.
Katie: Yeah, of course. So, there are some places where I feel safer, accepted, championed, valued, whatever as a Disabled and neurodivergent person and there are more of those than places where I feel the same with being trans and queer. I think that is also because of the work I do – I have been working in the disability charity sector for ten years now so I’m naturally around a lot of neurodivergent and Disabled people. So, I just think that’s how it seems to have happened with me, whereas if I was working in the LGBT sector then perhaps it would have been the other way round. I think where – y’know with all kinds of intersecting identities – there are some spaces where it is safe for people to go and be their whole selves but it’s few and far between.
Gillian: Yes, I agree. So, where would you go if you suspect you are neurodivergent? Where could we find a good source of practical advice, to help people with those sorts of situations?
Katie: Aucademy – which is an online 100% Autistic-led and training and educational platform, it’s all free – all the resources are free. And they have a resource called So You Think You’re Autistic? and it goes through all the things you might hear or might happen if you’re going through diagnosis this is what you might need. It’s a bit of a one-stop-shop for going through diagnosis in the UK. I would say to anyone who thinks they or someone in their life is Autistic , the best information you are going to get is from people who are also Autistic. There is an awful lot of – oh I made the mistake of good Autism Acceptance the other day and I don’t know why I did as the first five hits where things I really didn’t want to read. It’s a lot, if you think” there’s something going on with me”, and a lot of us go through trauma and if you’re trans that’s a lot to unravel. And if you’re going into gender identity healthcare going in for diagnosis isn’t always helpful because of ableism there but that could be a whole different conversation in itself. There is a lot to unpack without having to think is this resource helpful, useful who are these people are writing this research or information – what are their intentions? Who are they funded by? That’s quite a lot to contend with. (More on how to spot good research).
Gillian: Yeah, I think that’s really important because I was watching a documentary with Chris Packham and doing that thing where you sit and listen to an hours tv which is actually 15 mins sort of mawkishly dragged out to be an hour. Where you have sort of Autistic people being a source of entertainment and I find that quite ethically difficult to understand. It might be a good accessibility point for some people (I actually loved the programme myself).
The resource you mentioned I think are really important, because sometimes we just need a steady informed place we can go as a beginning point. I think the point you made there about people who know Autistic people or want to know more to help Autistic people is really important. Including the other things.
I hear – I’m a bit older than you – so I hear these conversations that “X-Y-Z has just been told they have ADHD but if you ask me, in my day there were just called ‘being a very naughty boy’” and y’know you hear that time after a time” just send them out to run around the garden and that will control them”, or “that’s just the difference between boys and girls”, you get the whole lot of uninformed opinion. That’s fine because being uninformed is a state before being informed so it’s really important we have those sources. What do you say to those sorts of people who are trotting out that old nonsense?
Katie: Yeah, depends on who is saying it and whether it was in a professional capacity or not! But just explain how I experience it – it’s not something that is made up. I feel also like I don’t know if I would say this to someone – it would depend on what capacity I knew them – there is a great deal of misogyny which bases itself around what was said in the sixties around “refrigerator mothers” so emotionally unavailable mothers, although it also was said about vacant dads a s well, there is a whole deal of misogyny around that where women and gender minorities tend to be (especially in heterosexual relationships) the main or sole caregiver of a child.
So, there is a lot of parental blame, which still exists now. Like having to go to parenting courses before you can get a diagnosis for your child, most of the people in that room are going to be women. It’s not just what is this saying about ADHD and autism – what is this saying about the implications on people we might be blaming. Not only is ADHD something you have to blame someone for because it is so awful – who also is being blamed here and who that benefits?
Gillian: We know much neurodivergence runs through families. And we often have parents looking at their kids saying, “where did this come from?”. And it’s quite interesting that you might say “Have you noticed this in each other?” and they say “oh yes, my partner is this and that” – well that’s where it came from! And we know there is a lack of tolerance for anxiety because of the genetic link of anxiety and I think a lot of mothers who are caught in parent shaming – like neurodivergence is our fault – but surely that isn’t the case but there is a huge genetic component to this, isn’t there?
Katie: Yes, so if you think about all the people who are being blamed for the behaviours of their child, young person or adult, actually quite a lot of them are undiagnosed neurodivergent as well. So, it is shame piled onto presumably some kind of internalised ableism but also “well I did that when I was a kid and I turned out find” …. Hmmm, did you? That’s interesting how people project themselves onto their children.
Gillian: It is fascinating the people who say things like that about the next generations “they’re work-shy, they’re lazy, they’re woke” and I’ll point out to them “but you are the people who brought them up! Do you think it’s from educationalists and Doctor Spock!?” I interview a lot of people from the United States, and the horror show of parenting in the sates s fascinating if you think the UK has it bad but there are quite interesting issues in the States. To move away from community engagement and involvement and a move towards individualism is to blame here. 200 to 300 years ago there was a lot more of a community – when you look at bits of Italy (in the blue zones) they still have this idea where extended families all live closely together and look after each other and nurture each other. So, you are role-modelling new behaviours, so an Autistic person would have had a different way of understanding the world through these role models. And we miss that, we just throw ourselves on the mercy of charities these days and it just seems a bit troubling really.
Katie: Yeah, that’s late-stage capitalism for you.
Gillian: I didn’t realise we were getting into philosophy.
Katie: Should we get into that or just leave that there? Euro-colonialism etc. So, y’know that used to exist but doesn’t create money making systems does it?
Gillian: I think what’s interesting what we loosely call the younger generation – cause you look 12 but you’re not – they always have traditionally been the forces of change. They are or meant to be, so it’s quite interesting looking back in at the young people in the 80s in Tiananmen square, Hungarian students in ‘56 and all that sort of stuff. The next generation are meant to move things forward. It’s interesting when people move things forward there is a group of people who think they are losing something, but it is just the inevitable movement of change. What’s fascinating is the generation I’m in would do a lot to learn for themselves from the youth of today. There is so much difference today due to technology and the like which we have never seen before. Change has been pretty linear the last 150 years, but the last 20 years has seen really discontinuous change and I think the next ten with AI and all that sort of nonsense coming its going to be even more extraordinary. I think we are going to see the rise of people with neurodivergence because we are going to need people who think differently, especially in this new world.
Katie: Yeah, possibly that’s really interesting. I was saying that to my husband the other day because our son is three and I was saying “I really hope I don’t turn into – when I’m older – “’oh well back in my day, we used to work 70-hour weeks…’” I don’t want to do that or be like that!
Gillian: Says the person who has 8 million things to do… you’re already on the slippery slope.
Katie: Oh-oh!
Gillian: So, Katie if people wanted to find out more about you and your work and connect with you, where could they?
Katie: I also go by Autistic and Living the Dream, I’m on Facebook, Twitter, Instagram, Blue Sky and I’m under my real name on LinkedIn as well. And I’m really happy for people to say “Hello”.
Gillian: Thank you for spending time with us – it’s been a real treat. Take care!