Disability, sexuality and gender

TRANSCRIPT

Leeds Disabled People’s Organisation (LDPO) Group interview
AJ, Leo Gunn, Becca Porter and Kirsty Ramsay-Hogan
Interviewed by Gill Crawshaw
4 June 2019

Part 1.
Leo Gunn: I'm Leo, my pronouns are she / hers. I'm 25, I live in Leeds and I am gay and I also have a chronic illness.

Kirsty Ramsay-Hogan: Hi, I'm Kirsty, I identify as she / hers. I'm 22. I live in Leeds but I'm from Scotland and I identify as queer.

Becca Porter: Hi, I'm Becca. My pronouns are she / hers. I'm 25. I'm currently studying in Leeds but I'm from Lancashire originally. I am a working class, white, disabled woman who is bisexual.

AJ: I'm AJ, my pronouns are they/them. I'm 26. I grew up in East Anglia and moved to Leeds when I was 18 for university. I still live in Leeds now. And I identify as genderqueer. Sexuality, I usually just say queer [laughs] and also as disabled I have - I don't have a diagnosis of chronic fatigue syndrome but I do have fatigue that is chronic [laughs]. And again, I don't have a diagnosis but I identify as autistic. I also have post traumatic stress and anxiety and depression.

GC: OK. Thanks, everybody.

KRH: I just realised I forgot to say my disability, but...

GC: Do you want to say now?

KRH: I'm also Deaf.

GC: Thank you.
OK, shall we start with, I wonder whether we can talk about coming out and whether people have got experiences about coming out that they might want to share?

BP: Shall I make a start? Yeah, I came out when - well, I'm not fully out to everybody at home, which is weird thing for me. So, I know, in terms of like, my immediate family and I think the ones I haven't come out to probably know by now [laughs]. I mean, you only have to look at my Twitter feed with all the Pride flags and [unclear], but there you go [laughs]. I particularly came out to my sister first when I was about 21. I'd always been in [unclear] for years, so really I'd got into the whole LGBT culture thing since coming to Leeds. Coz I'd met other friends who were LGBT and at home I didn't really have that. Yeah, so when I came out to my sister I cried, and it was - And my sister was like, ‘Why are you crying? It's not a big deal.' and I'm, like, 'Oh my god, but this is a big deal!' [laughs]. And that was kind of my experience. And then, we went home, it was as we were walking back to my grandma's, we went home and my mum just, my sister just went, 'Becca's got something to tell you!' [laughs]. There was complete silence, coz I wouldn't say anything [laughs]. That was kind of my experience of coming out.

LG: I sprang it on my mum at some obscene hour of the night. I came out when I first became quite ill and I was sort of housebound for a while, and so my - I would stay up quite late, I was living a very sort of strange schedule, sort of going to bed at sort of four in the morning and waking up at two in the afternoon. So we'd have these sort of intense conversations when my mum really wanted to go to sleep. And right at the end of one of these conversations, when my mum was incredibly tired, I just said to her, 'So, by the way, I think I'm not straight'. And she reacted very well for an extremely sleep-deprived woman [laughs]. And she came back the next day, she'd been to the supermarket and she'd bought the bag of figs, and she said to me - coz she says a lot, like, 'I don't give a fig about this!', just this is how much, 'I don't give a fig, Leo, it's fine'. She was really lovely, I think she did... And my parents had before that dropped several unsubtle, 'It's fine, you know, if you want to bring a man - or a woman, or...' Very, very attempting to be casual, but it was that obvious. I started with my mum and then kind of, unravelled it from there. But like you, I think a lot of people have just kind of figured it out.

AJ: Yes, some parents can tell, I think [laughs].

BP: Yeah, coz I remember telling my mum and then afterwards, like saying, when she was making tea, 'Thanks very much for [unclear] and she just went, 'Becca, I always knew you were gay, you know' [laughs], and I was like, 'How did you know??' She said, 'Because every time we talk about relationships you'd say something like: ‘Oh, I don't really know, like, I'm not really sure.' Like, coz she said, 'You wouldn't want to tell me that you weren't straight, but you also wouldn't say anything else either, you'd be like: Yeah, I don't know, I don't really know what it's like to be with a woman, how would I know? How would I know what it's like to be with a man? And you're dad's like, and I'm like: Yeah, Becca's probably not straight' [laughs]. But she knew for years and just was like, saying [unclear] it's kind of obvious.

KRH: I've never really like officially come out, it's just more like something that's kind of come out in conversation. Like: Oh, so you're bisexual, blah, blah, blah... nothing serious, I don't think. I've never had the conversation with my parents or anything like that, and I don't think it's something they would care about anyway. So, yeah.

AJ: Yeah, I think I've come out many times and I'm out in some arenas of my life and not others. I think, yeah, the first thing I kind of realised about myself was that I wasn't straight. I identified as bisexual at the time. And I remember, it was, is was just as things were starting to shift a little bit, you know, and I'm young enough that I don't remember how things were, like, in the 80s and stuff like that. So what I remember is just LGBT stuff, especially when it comes to being basically gay or bi, was sort of like in the news more and there was sort of programmes on the BBC and like, sort of seeing that represented kind of made me think: Oh, maybe I might be attracted to women as well as to men. And I can't remember who I told first, but I remember telling my boyfriend at the time and being really, really nervous about it. We'd already been together for, I think probably at least a year, maybe more. And he reacted really negatively and I thought that he was, sort of, not OK with the being bisexual part of it, it turned out he was more struggling with the idea that it was something big about me that he hadn't known about. But he didn't really, sort of, make that clear straight away. So I spent like a day, like, panicking, being like, Oh, I shouldn't have done that, I wish I hadn't have said anything. I was sort of talking to a friend about it, sort of a mutual friend, about how sort of panicked I was about it. And that friend ended up talking to him and saying, like, ‘You need to clear this up, because, like she's really upset about it’. So, yeah, that was kind of a mixed experience.

And I do remember something that I've definitely experienced since, both in coming out and just in saying things I find difficult to say to someone. So at the moment before you say it, where you can feel it coming, but then there's a barrier where, like, you don't want to [laughs]. And you know that, like, once you tip over then it's like out there. I told my mum and that sort of went fine, but I think she didn't really take it very seriously. And she advised me not to tell my dad. My dad is quite a bit older, he was born in 1938, so she was basically like, I just don't think he'll understand. Since then my sibling came out as a lesbian and it was fine, so, I thought I maybe would come out to him about that. And then it kind of just sort of happened anyway because I'm also polyamorous, which I kind of view in the same vein as sort of other LGBTQ stuff. Like, I consider that part of my LGBTQ identity because it's, you know, we have the same kind of, like, oppressions, like, you can't marry more than one person and like all of that kind of stuff. And people don't get it. So I actually came out to my parents as polyamorous maybe six months ago. I did it by email because I didn't want to, like, have to deal with their initial reaction and I also, like, you know, I made it very clear that I wanted their support. And I also sent them like, a like an online resource with more information. And they were both really positive about that. And then I told them that I had two partners and one of them was actually non-binary but is AFAB so I think I kind of, without actually coming out as bi, then that's kind of out there as well [laughs].

And yeah, I'm not out at work and I'm not really in general, out and about, I'm not out as non binary because I just find it easier not to bother [laughs]. But I am with sort of people I'm closer to.

That was a long answer, I have lots of identities [laughs].

GC: That's fine, thanks.

How does being a disabled person interact with being LGBT or queer?

KRH: Well, when I was in Glasgow, like, there's a big, like Deaf community there. And a lot of them hang out in like, the queer societies, like a lot of them are into like drama and art stuff. So that always kind of combined, it always kind of, it was always a very big ... so, that was always part of our identity in a way. And we found that the queer society was much more like, just welcoming. And they probably thought the same about Deaf community and there was always this sort of, I don't know, partnership in a way, kind of. It was nice, yeah.

LG: I think, for me, having my condition, which is ME, I developed that at about 15 or 16, and that was kind of at the time of my life when I would have been figuring things out. So I think for me it really sort of stalled that progress at a time when I think, naturally, I would quite quickly have come to that realisation. Just suddenly, none of that mattered. Being in a relationship for me just didn't matter at all. I'm housebound and I've dropped out of school and none of my friends are talking to me, and my life's not worth living, and you just ... lose all of that drops away. And I think, it was only when I realised awkwardly that I was in love with one of my friends that it all kind of went pfft! And I think one of the things I've struggled with is figuring it out a bit later in life, and feeling a little bit behind other people. I think that's quite a common experience, you sort of think, I should have got my head round this by now, I should know what I'm doing and I should have a lot more experience in dating and it can, I think particularly among people who don't have a disability, you know, or a health condition, it's a very different experience.

AJ: Interesting that you say that, because, I feel like I've almost had it the other way around, that I sort of came to that realisation about my sort of, at least my sexuality, not so much my gender identity, quite early on, but I didn't really come into my identity as a disabled person until only really a few years ago, and it's something that I'm still kind of getting used to. And I think it's, it would have been really helpful to have the same kind of representation and more kind of awareness and support when I was younger and it would have probably, like, saved me from a lot of the grief and like, a lot of the mental health issues that I ended up with. Especially in terms of, sort of, the autism because I think that probably - looking back, I didn't really realise I was anxious more than is the normal amount to be anxious, but looking back, I was an extremely anxious person. And it was only when I, when I ended up with, sort of really, really severe anxiety a few years ago that I kind of became aware of that. And I do a lot of that probably does come from being autistic and not having had any support for that at all as I was growing up. So, you know, I felt like there were rules but no-one would tell me the rules and no-one - everyone else just seemed to know what they were, but they couldn't identify them or articulate them, they would just tell me that I was being weird and that I was, you know, something that I was doing was not right. And that sort of really negatively affected things for me and sort of obviously taking a lot more time to unpack that now as an adult than if I'd had that support growing up.

I think the other way, the major way that it affects me is just, especially with the fatigue that I have now, it's hard to socialise. So that and, you know, sort of the combination of disability and being LGBT, you know, those are both things that can make it harder to sort of find your people and find the space that not only is inclusive but also, like, fun for you to be in [laughs]! So that's something that I've been struggling with a bit.

And again, especially with the autism, that's been one I've been thinking about a lot, it's quite hard because, you know, even amongst other autistic people, it can be hard for us to share a space in a way that's accommodating to everyone because our needs can be so different. Like, some people need to - I had a situation recently with someone who verbalises what they're thinking a lot of the time, and for me that's very difficult with my fatigue, so I can't, I don't have enough brain space to concentrate on anything else and it wears me out. And so that's sort of, it makes sort of my social interactions a lot more difficult.

BP: I think me in terms of my disability, I have a chronic illness that affects me physically, so I walk with a stick, basically, 99.9% of the time, and I have chronic pain. So I think for me, one of the things I notice is, when I tell people you have chronic pain, their instant reaction is that you can't be, you mustn't be able to sexual at all. Now ... [laughs]

This kind of becomes a problem when you're in a LGBT space, if you're in a gay bar, anywhere like that, that people just don't, just sense that you're, just don't speak to you, coz clearly you're not capable of doing those things and clearly, like - I once had a, I remember having my mother's friend back home, I went home for a visit. We all went out to the pub together. And they were making jokes about having sex. They had a joke about having sex. And then my mum's friend awkwardly gasped and said, 'No, we can't talk about that in front of Becca!' And I'm like, 'I know what it is, I'm 25 years of age! I'm fully aware of what goes on in the world!' [laughs]. But then it's like, once people get the double-whammy of: 'Oh, did you know I'm also gay and identify as bisexual?' And they're like: ‘Whaaat!?’ [laughs]. It kind of like blows their mind. Like, I find that really difficult, difficult to meet somebody because of that, they make instant assumptions by the fact you've got a stick, that you just can't physically engage in those things when you definitely can. [unclear]

I think, just picking up on something that kind of deals with the question of [unclear], when you were talking about coming out later. I went, my town is extremely right wing and it's a very small Lancashire town, very northern, very [intake of breath] quite a big UKIP thing in the area at the minute, some of what it's like over there. And I went to an all-girl Catholic school, so, 'lesbian' was thrown around as an insult. That was kind of, the dagger-in-the-heart thing that you would say to somebody to get things to kick off and end up fighting with somebody, to shout it down the corridor at people and so many queer insults, sort of those identities were kind of thrown around, like as a way to insult somebody. So I don't know whether that's what derailed me from coming out, like a lot, what we all felt, like you kind of miss that opportunity almost, when you're that age, because you don't have the space to be able to do it properly and figure out how because there's so many other things going on. And that was hard.

So yeah, it was only when I kind of came to university. I was at university in Manchester originally. And people were just openly gay, bisexual, lesbian, whatever. And I was like: Oh my god! You can do this, this is a thing that people can do? And just be open - and everyone's fine with it? [laughs]. So that became a kind of thing for me, where I slowly sort of started coming out to more and more friends. And, like I say, my sister and then - and now, since coming to Leeds, when people would, were saying, yeah, it happened again, but it was with closer friends. I was like, 'Well, if you're going to say it, I'm going to say it, I'm bisexual.' And they were like, 'Yeah, fine, it's like, no-one cares, Becca!' [laughs]. 'No-one cares, just move on!' [laughs]. It was a massive thing for me, just, like, to be able to say, 'Oh, yeah!'

LG: It's funny, actually, how those kind of casual disclosures can somehow feel more momentous than really big moments. Coz for me, it's realising: oh, sometimes I could just mention this casually in conversation, I don't always in every environment have to prepare myself for, how am I going to say this, and how are they going to react, to be in a space where I just feel I can just safely, casually mention it and then the conversation moves on, is almost more impactful for me than having to sit someone down and think it through. That moment of, oh, I've found, I've found my people a bit, I feel safe here and I'm, kind of, OK with myself. It's a really sort of small moment in a lot of ways, but it's a really big one as well.

AJ: Yeah, I agree, it's always, the kind of people I feel most comfortable with are the kind of people where, yeah, like I could casually mention it and it wouldn't be a big deal. Rather than, I feel like the opposite is where generally people assume that you are straight, that you are cisgender. I would also say that, like, because my disabilities are kind of invisible, I feel like I have quite a similar experience with sort of coming out about my disabilities as well. Again, people sort of assume that I'm fine, and then it can be, like, a big deal and some scenarios, and then the people again I feel most comfortable with are the kind of people where I could just casually talk about it, it's just part of my life, and I'll be like, cool, you know, like it'll just be a passing comment [laughs].

LG: It's really interesting you say that actually, because I think I've had the same thing in terms of disclosing my disability. I'm using a cane a lot at the moment and that's partly because I've got quite comfortable with, you know, I don't care if you can tell. But when I first went off to university, my undergrad, telling people I had ME was like a big deal. And I just - I didn't tell anybody. And there came a point with some people where I'd have to explain, look, this is why I haven't been in this class, this is why I have a recorder, this is why I just stopped listening to what you were saying. and it felt like a huge deal. Whereas now, it's just like, 'Yeah, I have ME', and I think it's really nice that I'm in a better place with both of those things. And it's interesting, often, the spaces where I'm comfortable saying one and the other, that they're the same space.

AJ: I agree, yeah.

BP: Yeah, I think for me, coming out as disabled is sometimes harder than coming out, because you're just kind of, coz it's all the time, like all the time, I don't know whether it's the same, you've had similar experience where, as soon as I got to university, I had to tell this lecturer, and this person, and that person, someone else needs to know, and you're just like, oh, how many more times do I have to, sort of, come out as disabled and say, 'Oh yeah, by the way, you need to do this to meet my needs'. But you also don't want to bother people, so you're like, 'Sorry! Would you just mind doing this?' and really, it should just be a thing that happens [laughs]. It shouldn't be, like a, whereas...

KRH: Yeah, that's interesting. I feel the pressure when I come out as Deaf, I feel that, kind of thing. But with my, like, queer identity I've never really, I don't know. But yeah...

BP: I think the only way I can think of explaining it is like, me being bisexual doesn't stop me climbing some stairs. [laughs]. Sometimes I genuinely can't climb the stairs and then I have to make a big fuss, like, 'Can you direct me to where the lift is, coz this building isn't very well signposted? Thank you'. [laughs]

AJ: I have that problem on buses, actually, coz, I mean, I used to just walk everywhere, but I can't do that now. And sometimes, sometimes I'm really too tired to be taking the bus either, but I can't afford to take a cab. And, depending on how I'm doing, if I'm really overloaded, 1) I'm at a point with my attitude now that I always, always need to sit down; and 2) if I'm really, really overloaded, I kind of, really need to sit down somewhere that's not too near other people, but that's something that I don't necessarily feel comfortable trying to disclose and explain to people on a bus and ask them to move and stuff like that, because I don't feel like they'll necessarily understand or believe me because I don't look like I need those things.

KRH: It's like the stigma that exists, that existed for, in my opinion, existed for like the queers and the [indistinct], is in the disability thing now. So, like, the stigma around disability that that leads to, like maybe in 20 years' time people will be like, 'Oh, people were actually ashamed to come out as Deaf, or like to say they had a disability'. So …
LG: I think we're making more progress with LGBT liberation than we are with disability at the moment.

All: Yeah, Yeah.

AJ: Yeah, and I find myself judging myself against, sort of, those like able-person standards, where like I don't know how to see myself sometimes in those situations where I'm like - oh, someone's getting on who looks like they need to sit down. Should I move? Stuff like that, where it's like, actually I need to sit down as well, but like, it's never actually happened to me but, like, I don't know how I'd respond if someone asked me to move and I was like, I'm sorry, I need to be sitting as well [laughs]. I do worry about that.

LG: Exactly the same. Yeah, and I think the thing I hate when I get on the bus or I get on a tube is, OK, so, that's the priority seat. Does that person look disabled? And also, do they look likely to start arguing with me about whether I'm disabled. And sometimes it's like, you know what, I'm just going to stand up coz I can't deal with this and it's not a good idea for me to stand up at all, but it's easier than dealing with a potential confrontation.

BP: I once stood up on a bus to avoid a potential confrontation and fell into a woman's lap [laughs]! Coz I have a learning disability, dyspraxia, which also affects my coordination. So I’m stood up on the bus and was like, OK, I can't ask anyone to move coz it's [unclear] with my stick. I'll have to stand here and cling on for dear life, coz it's down the road, it'll be fine. I stood there, and just kind of fell forward and lost my grip with one hand and kind of fell into this woman's lap. It was very, very embarrassing. And at one point about three people got up and moved to give me a seat and I was like, thank you!

GC: So, I wondered if you've experienced these sort of issues or barriers in queer spaces?

BP: They're not massively accessible on the whole, I find. They're usually in old buildings, with very little access, which is kind of a problem.

LG: And often, they're very - a lot of lights, so much noise, you know a lot of, I absolutely understand why a lot of LGBT spaces are bars and that, but the, just, you know, it's not a fun night out for me. Like I could just stay at home, in the dark and hit myself around the head with a saucepan and I've had basically the same experience [laughs].

I feel that there's this tacit, I know it's not intended, but it feels like there's this tacit, you don't belong here, you know, we don't want you people here.

AJ: Yeah, I've definitely found, the way I kind of put it is, I sort of feel like there's a very big difference between LGBT spaces, which are often more, kind of, LGB or just LG spaces a lot of the time and queer spaces. My sort of experience is that I tend to go to the queer spaces because the LGBT spaces are often, I don't really feel welcome there, even not counting my disability stuff. And then, like, other people have talked about, a lot of it is based around alcohol and nights out and stuff like that. And I have IBS so I can't drink and I have fatigue so I can't go out, like, if it's 9PM I want to be at home getting ready for bed, you know [laughs] so it just doesn't work for me. But then, the issue I've come across in queer spaces is that often, actually, a lot of the people there are disabled or have mental health difficulties or both, and that it can be very difficult to accommodate everyone. And that I think, it sometimes doesn't occur to people that, in order for us all to be able to share that space, we'll have to like have those like, sort of, big conversations about like, here's my feelings and my needs and here's my feelings and my needs and is there a way that we can make all of that work? I think that's something that kind of needs to happen but I think it is something that, I feel like, you know, it's, I'm pretty sure it's sort of statistically you're more likely to have mental health problems if you're LGBT. And I think that is sort of something that makes that accessibility even more of an issue. Yeah, because obviously we need, like, the physical accessibility which can be an issue because often there's not a lot of money in those communities either and so it's hard to find spaces that are accessible and affordable. But then also with, like, the mental health side, that makes the social side of it more complicated to manage, which can be hard as well.

GC: Where do you feel welcome and comfortable?

AJ: I feel welcome in the Non Binary Leeds group and to a lesser extent the Trans Leeds group, but that is mainly members who are binary trans, which, you know, is fine, but like, being binary and being non binary are two very different experiences of being trans. But yeah, the only issue I do come across is sometimes I have issues with the way that somebody else in one of those groups is behaving and I don't know how to approach that in terms of, like I said, like this issue I had the other day where someone was being very, very talkative to the point that it was causing me to get overloaded. And I sort of didn't know how to handle that or talk to them about, like, to basically say, I need to be further away from you and not directly having a conversation with you all the time. That was kind of hard for me to manage.

BP: I think I feel welcome in the spaces, probably that LDPO creates because there aren't many of them, as I mentioned, not many places are accessible. Like you say, the alcohol thing is a problem, there's [unclear] not everyone wants to drink either. Coz I have on occasion where I'm not supposed to drink, and occasionally I will. That might be the [unclear] I didn't know anything better to do than drink alcohol so maybe that's just how I am [laughs] - who knows! So, I don't mind going for a drink, I quite enjoy it, it can't be too noisy coz it stresses me out, I can only do it for so long, coz it's tiring, I want to go home to bed. Yeah, so maybe that's, kind of, maybe I haven't properly found my space yet. So I think, maybe, there's a [unclear] out space. Like the, for ages I'd been meaning to go to some of the meetings that the Student Union holds for the, they have like an LGBT coffee drop-in type thing. And I kept saying I was going to go and then just never got round to going! Coz when like you are fatigued, I find, like, oh, you are disabled, your time is so precious that you have to choose how to divide it up. So me going for a brew, or like, me getting some work done, the work has to take priority over me going to have a cup of tea with someone, as horrible as that sounds [laughs]!

AJ: I totally get that, yeah. Yeah, that's a problem that I'm hitting up against at the moment, coz I've kind of, I've been making progress with my sort of health issues and, like, my fatigue has got a bit better as, sort of, my mental health has got better, but I've kind of hit a wall where I can't really get any better unless I have support. So now I'm just kind of waiting to like get carer support and just waiting on the council to like go through that process. And in the meantime it is, like, yeah, like most of my energy is taken up just by managing everyday things, like making sure I have meals, trying to make sure that I wash and that I do the washing up and if I can, like, sweep my flat I feel a lot better, and, you know, stuff like that. And it's like, I don't really have much energy for anything else. And that has been a big barrier to socialising and sort of finding my space. But yeah, the things that I have gone to that I've enjoyed have been sort of, like, board-gaming events specifically for LGBT people or like, colouring and like crafts, things like that which are, like, during the day and dry events, and usually sort of, quite quiet.

LG: I think that's part of why it's so important to have online spaces when you can't get out, you know, your options shouldn't be: You're on your own, or you're out in this environment, you've got to get there yourself and you've got to cope with it while you're there. So I'm glad LDPO's been doing more stuff online, because that way you can be in your own environment, you can control it and you can be feeling a bit slow and a bit tired but you don't have to be - you're on your own but you're not alone. I think that's perhaps one of the most important spaces, spaces that kind of aren't actually spaces.

KRH: I think with me, like, Deaf community is like a safe space, but at the same time it's also not, because with Deaf people there's like this thing where it's like, you're so BSL, you [unclear] sign and you don't speak. So it's like this hierarchy thing where like, if someone like me who's mainly oral and I don't sign, like as well as they do, there's this whole kind of like snobbery type thing. So it's certain types of Deaf people, like, that are similar to me. And also queer spaces I find are incredibly welcoming, in arty kind of stuff, I find, yeah.

LG: I think spaces with other young disabled people, I think that's one of the things I've found most liberating is being around people my age who understand. Because before that I found I would get on - elderly people would understand to an extent. I mean, sometimes they would sort of forget, it'd be like, can you do this? No Doris, I can't do that, I just told you, I have ME [laughs], but you know, we would get, I'm tired, and I can't do this, but they would understand that side of things. But I would feel a lot of the time, there's a lot of myself I can't share with you. And then with other young people they are more likely to be accepting, but they just do not understand my life, like, there's only so many times you can cancel on something. They get uncomfortable when you need help with things or I'm actually not feeling so well today and they just can't cope with it. it's among young disabled people that I've found people who are more likely to be accepting of all of me, I think.

KRH: The LDPO is like the safest place that I've, literally, I just, the minute I arrived I didn't feel anxious or anything at all, like, I just felt completely relaxed. They're very welcoming people.

AJ: It's interesting what you said about, like, older people and stuff, because I had the same kind of thing of like, it's kind of often, like, more like the kind of issues that you end up talking about with older people are kind of more relatable to me than stuff I talk about with people my own age. you know, things like, my memory's really bad, I'm really tired and like, I'm struggling to get this done or that done or like, it's such a shame that the bus doesn't stop closer to my house. You know, all those kind of things where, like, they have the same kind of concerns and like, I've even noticed it in, I've been really enjoying TV shows or films that have, like, older people main characters where there's like funny scenes where they drop all their meds on the floor and stuff like that. And it's like, that's relatable to me [laughs]! And I don't get to see that very often and it's very refreshing but it is kind of sad that I don't really feel that I get that much representation from, like, my own age group. Yeah, I'd say that, I should check out the LDPO coz it sounds great, coz like, I've kind of had that the other way round, that like, it's been easier for me to fit in with like my queerness and stuff than to navigate, sort of, my disabilities, coz like, most of my friends aren't disabled and they mean well and they want to accommodate me but I feel like the onus falls on me to work out, first, that you can just work out what it is that I need and what I'm having a problem with and then to sort of express that and navigate that and try and like negotiate it and that's quite hard.

LG: It's exhausting.

AJ: Yeah, because especially if I'm having a problem that I'm usually getting overloaded and then it's hard to think anyway. So it's like, and now it's my job to say something, but I can't right now.

BP: Yeah, I find sometimes that's one of the problems with me, like, when, a lot of my friends back home - I didn't really have disabled friends until I came to Leeds, so, all my friends at home are lovely, amazing and to the extent, they're great, no matter - there's only so many times I can say to them: I'm tired, before like: but everyone's tired [laughs]!

LG: Like, we're all tired.

BP: Yeah, like, we're all tired, don't complain. I'm like: No, you don't get it, I'm really, really, like, exhausted-tired. Like I just ran a marathon. My friend was like, ‘What have you actually done today?’ And I was like: Oh, here we go. So I was like, right: ‘I've made my bed, I showered, I got dressed, I've come here, and that's it’. And they were like, ‘That's not a lot’. I'm like, ‘It doesn't matter whether it's a lot, I'm telling you I'm tired, that's all’. It shouldn't be a contest.

LG: Well, people don't understand that it's a lot to do...

BP: Some of my family members, it's like a, who can win at being the most tired. And I can guarantee I'd always win, if I didn't, they'd ask me what I'd done in the day [laughs]. Like, some days my accomplishments are, I can do this today, do my thing. Other days, my accomplishments are, I shall wash my hair and actually get dressed. So like, you know, they vary massively. Sometimes people don't always get that.

LG: It's so frustrating having the same conversation. When you think someone understands and - one of my oldest friends, who I live with at the moment, and it's only living with me that she's like, oh, OK, I see what ME is a bit now. It's kind of heart-breaking, some of the things she's said, like, when we first moved in together she was like, ‘Do you want to go to the gym?’ ‘No, I can't go to the gym’, and she just used - she kept going on about it. And then she went away and read an academic study on ME, a decent one, not some of the really dodgy ones, and she's like: Oh, hang on a minute, it looks like if you exercise you could have a relapse! And I'm like: Yeah, I, I told you that. You don't have to have a PhD to do that - right?

BP: Yeah, sometimes you have it where people suggest unsolicited, give you unsolicited advice.

GC: You know, can we maybe talk about meeting people and relationships, friendships? Is - are there particular issues then for LGBT disabled people?

BP: I know, I'm - with my friends who are back home, I think I'm the only LGBT and disabled person in that group. So that can make things a little bit awkward. Quite a lot of my friends are couples and have been, some of them before I even knew them, they were, like, hetero-cis couples. So with them I'm just like, OK, I'm like the sixth wheel in this group, I'm like the gay, disabled one. this is fine [laughs]! that's kind of just how it is. But, most of the time that's OK, and sometimes I'm just like, OK, this just isn't like working for me because ... there's still like that kind of heterosexual expectation. So, like, my female friends or my female cis friends will talk to me about boys and boys only. And I'm like, well, actually ... [laughs], you know, that is part of what I'm interested in but also there's this entire other side that we're just not going to talk about and not acknowledge. It's just like the elephant in the room, like: Yeah, Becca's gay, but we just won't talk about it [laughs]. Like, we're not going to discuss that! I don't know whether, I've never been to say, for example, an LGBT space with any of my straight friends, until I came to Leeds. So I don't know whether is that because it's falling on me to go and try and sort that out or is it because they just don't really want to. Particularly I find with the lads in the group, they're a lot more uncomfortable with the idea than my female friends are.

AJ: What, with sort of joining you in LGBT spaces?

BP: Yeah.

AJ: Yeah. So, it made me think of, I have a friend who I'd been in university with, who was a lesbian. And one of her male housemates decided that that just meant she was totally happy to hear his, like, very, very sort of graphic stories about his sexual exploits. And she was like, ‘That's not what I meant! I don't really want to hear about all the sex you've been having!’ [laughs]

BP: [unclear]. One of my friends at uni, he turned round in, while we were in - he went, 'Becca, look over there, she's fit'. I was like, 'Yeah, she is, but like, stop objectifying, turn away! Turn away!' [laughs]. Like almost like, those two things come to clash with me where I'm like, 'Scuse me, you shouldn't be objectifying other women! Yes, she's good-looking, but turn away. Come over here, stop looking at her'.

LG: I really have, in fact, I don't really have that many male friends. Increasing now, I've met through LDPO and, but, I suppose I've been in a very, kind of, most of my family, and my immediate family, are women and I went to an all-girls' school. I've always been a bit of a militant feminist, which puts a lot of men off talking to you [laughs]. And I've, I don't quite know how to - and I'm sort of, I'm kind of not interested in moderating myself to be around men, so some of the things that they'll say sometimes - life's too short! So I'm, and I have friends who are just like, ‘Well, you know, he's a nice guy, and I'll put up with it anyway’. I'm not really, not really - that's not how I feel like - I only have so much time, you know? I don't want to have a conversation where someone's just kind of being casually misogynistic, I'm just not interested in it.

AJ: Yeah, I feel the same, especially with my fatigue. I don't have much energy to socialise anyway, so I feel like I can be very picky where it's like, if I don't, if you say something that I'm not comfortable with, then I'm like very happy to never see that person again! And I think also, because I have post traumatic stress, sort of related to abuse - from men and women but also specifically, like, relationships, like from men as well, then it's like, if someone's being misogynist then it's, well, I don't feel safe with you now. And if I don't feel safe, I don't want to spend time with you, and I'd rather, I'm quite lucky in that I'm very happy spending quite a lot of time on my own anyway, so it doesn't really bother me.

Yeah, and I used to have more trouble with the whole sort of hanging out with straight people and having them just assume that you're straight and like not wanting to, like, make a big deal of it by coming out, also not wanting them to assume that you're, that you're straight as well. and that was quite difficult but I've kind of ended up in a position where, just the people I usually end up being friends with just aren't anyway. Like, I don't think I have, literally, any, any friends who are both straight and cis. And yeah, that kind of works better for me. So like, it used to be a problem and now it's not a problem for me because I just don't hang out with people that don't get it. And I don't have the time and now, especially with the fatigue, I don't have the energy to take the time to sit someone down and tell them, sort of, explain to them. which, you know, maybe I would if I had more energy, if I thought that they could, like, come to understand it and be better, then I would maybe do that. But I know that I just don't have it in me to enable me to be that person for them. It's like, well, if they change, great, and if they don't, I just won't hang out with them [laughs].

But yeah, I've had, I've come up with against more of an issue with the sort of whole disability stuff and that, at the moment, like most of the people in my life aren't disabled or if they have, like, they might have like a mental health condition or something but probably not to the same sort of severity that I do. And that's been more of an issue where it's been, especially because I never had any support growing up and I only really came to realise that I was disabled in the last year. I have a lot of times where it's like, I don't even know if it's possible to be accommodated and I don't know what I would ask for. And then, and then it's also like, sometimes people ask me, like, is there anything I can accommodate you, but I don't know! And sometimes they don't and then it's on me to have to try and say something and navigate that, and that's really hard. So yeah, I think probably the next stage for me will be making more disabled friends and I think that'll be really, I'll end up feeling more comfortable and sort of, I'll probably find that a lot of my needs get met, sort of a lot more naturally. Like that's one experience I've had.

KRH: Yeah, you're with friends now.

AJ: Yeah. Like that's one experience I've had with an old friend of mine who had a lot of other disabled friends and sort of had disabled housemates before. The last time he came up to visit me I was suddenly finding that, wow, so many of my needs are being accommodated and I didn't even say anything. And I was like, I've never had this experience before, so that was quite bittersweet, that it kind of made me feel really sad but also, like, hopeful that things could be easier. Because a lot of my energy gets lost on that as well, if I'm not being accommodated properly, that I'm losing spoons just all the time [laughs].

BP: Yeah, yeah, one of the positives of having disabled friends is that either, like you say, they don't need to ask you, but also they think to ask you as well. That's like a major one for me, like, oh, you actually thought to ask me if I could manage this staircase, this is cool, yes. On this particular - yeah - I like that people actually think to ask.

AJ: Yeah, one of the things that I noticed is that my friend kept asking me, 'Oh, would you like to take a break?' and that was amazing, coz it's like one of those things where it's like, I could probably manage without one but I'd do better if I had one. So, if nobody asks, I'd probably just try and push through or not even think about it, because, yes, I was like, yeah, I think I will actually. And then he'd just go and do the washing up and it'd be like, wow, that's something I don't have to worry about later. Like, that's two spoons that I don't have to, like, allocate to that.

BP: Yes, I find sometimes as a dyspraxic person I can forget to kind of take breaks sometimes, or I'll forget to do something. So, I like having friends that ask and say, 'Oh, Becca, have you taken a break?' and I'm, 'Oh actually a break would be really good!' It sometimes just doesn't enter my head. When I'm excited and enjoying myself, I won't think, and I'll be like, and I'll come crashing down because I'll be like, oh I really should have taken a break when we've been walking round. And things like - so it's nice if someone else kind of thinks for you and says, 'Do you want to sit down?' and I'm like, 'Yes, I do, get me a seat!' [laughs]

AJ: Yeah, I have the same problem, it often just doesn't occur to me. And what's worse is like, when things are affecting me the worst is when it's most likely to not occur to me. Or, even if it does occur to me, to not know how to articulate that to someone else.

GC: Can I just ask, are there any other issues that we haven't covered already that affect LGBT disabled people?

LG: I mean, I think relating to getting into relationships. I mean, for me, I feel a lot of the time as if I'm hypothetically a lesbian, rather than practically, you know, because I don't have the time to date, I don't have the energy to date, what?! You know, why would I want to leave my house, meet someone I don't already know, go somewhere? No! You know, I don't really have that opportunity and you end up feeling a little bit like, am I actually gay? Coz I'm not really acting on it. Is this, do I belong in these spaces and I've just got - yeah, and I think there's a lot of people trying to get into relationships, there's a lot of stigma and there's a lot of, just assumptions about what you can and can't do, physically. And I think it's more than just other people's assumptions, it's how you feel about yourself. My self-esteem is getting better but it hasn't been great. And ... if you can't see in yourself why anyone would want to be with you, it's very hard to put yourself out there.

BP: I think one of the most - in terms of the interactions I've come across when I talk about relationships too, family members in particular, is now all of a sudden, when I kept saying I didn't want children, I suddenly see there's a justification, because I'm disabled. Not that, I mean, one of our, one of my relatives, my uncle is, his fiancée has cerebral palsy and they have a child together. Not that that happened, not just forget, but in the more immediacy of it I suddenly, like, almost like I suddenly had justification for not wanting children.

AJ: You get a pass, because you're disabled, because you can't do that.

BP: Because I'm disabled. And then part of me goes, but no! But I could if I wanted to, that's not the point [laughs]! It's like, excuse me, if I want to have children I could definitely have children, I'm just choosing not to as I was choosing all these other years when you didn't take it seriously.

Yeah, then in terms of the relationships thing, yeah, I shouldn't, I [unclear] end with that, because sometimes I just think, what was the point in me coming out as bisexual? Coz I literally never meet anybody! If I literally - course, there's this whole thing of I find sometimes it's difficult for me to decide, is this girl being nice to me because she's being nice, because girls tend to be just nicer than men in a bar? Coz men just seem always to be after just going home with you or whatever. Women are just like nicer, generally. Or are you actually telling me you'd like my address or something because, because you're trying to tell me something else, but, like, you're actually interested in me romantically? And I find that really hard to navigate and maybe, had I come out sooner, maybe I would've been able to kind of recognise the cues of when someone likes me. Coz now I just don't, I see everybody as a friend and that's kind of like my baseline [laughs]!

LG: I totally get that. I feel a bit left behind at times, I feel like I've not caught up with other people my age. I feel like I've still got a lot of processing and figuring out and understanding how to be in these spaces to do. And that is quite isolating.

But also, I feel a little bit of a disconnect from people my own age generally. And if you're not comfortable around a lot of people your own age, well those are the people I'm looking to date, hopefully [laughs], and that, I think, that kind of, those social issues hit you just when you're looking for a friend. When you're looking for a relationship it can be so daunting, going into new spaces and seeing new people and just subjecting yourself to a whole new round of questions, you know, that you don't want to answer. And sometimes feeling like you have to say something, just, it feels like I have to disclose a lot about myself before we can even get to that point, which you don't always want to do with a total stranger.

All: Yeah.

BP: Last time I went out, actually to a gay bar in Leeds, that was - I did have a drink, as I mentioned earlier, I don't mind having one, it was nice, it was good. And I think two or three different, who it turned out were straight men, were in the bar, and I said, 'Oh, I'm bisexual, blah, blah', thought it was fine, and then they started, you know like, I was something of a kink to them? And I'm like, I'm not here to be some sort of weird, like, fetish-thing, like. Also, you're a straight man in like - 'Oh, no, no, it's OK, I'm not gay' - and I'm, 'But you're in a gay bar!' [laughs] You know what I mean? I'm paranoid that you're trying to reassure me by telling me you're straight, but I've been dancing with you thinking you were gay and just having a nice time and it's all fine, and now all of a sudden you want to take me home and get into my pants and I'm, ‘It’s not my thing- no!’. I've come to this space for a very specific reason, like [laughs] to avoid people like you. Go back to 'Spoons or wherever, go down the road!

LG: That's such a good title, though, you know, like: Are you serious? This is the one, the one little space in the world that isn't about you, why are you here?

BP: Why are you here? And then one of them told me that he'd come looking because his wife was at home and was bi! Oh, yeah, that was an absolutely shocker and a half! I was like, 'I'm sorry, I'm not that person you're looking for!' [laughs].

AJ: Yeah, I've been out with that whole thing -

BP: He seemed like a nice chap, the next minute you're like, OK, this conversation's ending, I'm going to go back over here now, I was like, slides slightly to the left, back to my friend who I with.

AJ: Yes, that's a big problem with, like, if you are attracted to, sort of, people of all genders, where people are like, oh great, so you can have a threesome then! It's like, I could if I wanted to, if I was interested in you and your partner but like, it's not a given that I would be [laughs].

BP: I'm very much a one-person person, thank you. Like, I don't need extra people.

AJ: Like, it's one of those things where for me, like, I, it's not that I'm not open to that kind of thing but like, the idea that, like, I'd be open to it with, like, anyone is kind of bizarre, coz it's like, I still have, like, very exacting sort of, like, standards of who I want to, like, date, let alone have sex with, you know? [laughs].

BP: I remember going over to my friend, who's pan, and I was like, 'Save me!' [laughs]. She was like, 'Come on, Becca, come over here', 'I'm coming - I'm sorry, my friend needs me', I'm like, 'I'm just going to go over here now, just over here, this corner where I should never have left', coz god forbid, I should want to buy a drink at the bar, sorry!

LG: I don't mean to harp on, but experiences like this when you only have limited energy, this is why it's hard for us to date and hard for us to find people, and just socialising as well. I think dating is like a, the next step up. When so many of the experiences are like that, it's like, I have only have so much time and energy. I don't want to keep expending it because I think, I think someone who isn't disabled, that's not a great night out, sure, but get up tomorrow, go back to work. I've had to plan to come out late tonight, I'm going to have to get up later tomorrow, I'm going to be very tired tomorrow, I might not have to do all these other - and I’m making so many sacrifices to be bothered by straight men at a bar, like [sighs].

AJ: Yeah, we're limited by the bad experiences that we have as LGBT people and then also how that affects as disabled people. I think, for me, with sort of the combination of autism and fatigue that I have, it takes me a long time to emotionally process things, especially difficult experiences. And so that is a big barrier of like, if I'm going to go out to a social event, not only do I need extra spoons to just - by spoons, I mean energy - to go there and spend that time there, but I also need extra spoons to, if there's something difficult happens, to be able to deal with that. And sometimes I'll plan that ahead of time and sometimes I won't, and it'll hit me in the face and I'll be really tired the next day and won't be able to barely even get out of bed. But also a lot of the time it means that I don't, because I don't have the spoons to get there and be there, and come home. You know, like I might have the energy to make the trip to get there but not to do anything while I'm there. And then, it's like, you know, I need that energy, like I can't just do it and then collapse, you know.

LG: You've got to be able to get back.

AJ: Yeah.

LG: Oh, I got here, what am I going to do now I'm here?

AJ: Yeah, and like, sometimes I think, I could go and I could be there but I wouldn't have energy to get back, and so I can't go. Or like, maybe if I do nothing else today I'd have energy to do that, but I also need to eat dinner so I'm going to have to pick dinner over socialising.

KRH: I agree that being disabled definitely has a big effect on, like, self-esteem. And that's like, it's obviously going to affect me. There's like, I've had relationships with hearing people and it's - I can see myself having future relationships with hearing people, but, when it comes to, like, if it was a life partner I was choosing - and I've had this conversation with other Deaf people, we've always kind of felt like we would maybe feel more comfortable being with another Deaf person because there's always this sort of, you don't want to feel like a burden on this person and then there's always this like, yeah.

LG: Feeling like a burden and, sort of, body image and self-image issues are two really huge things. Like I've had a lot of issues with a family member who made it very clear that I was a burden and I wasn't wanted for a very long time. And you, that affects you. And it affects you, honestly, even if you haven't had that kind of experience because the messaging is so prevalent. And you feel like you're, you're taking so much baggage into a relationship. And it's hard not to be thinking, when you're asking someone to do something, gosh, do they really want to put up with this for more than just this afternoon? Am I asking too much of someone? And I think also if you have, me having a physical impairment, it affects, obviously I can't go out and exercise a lot. The expectations of how women should look are impossible for anyone. As someone with a physical impairment they are so impossible. In some ways I can throw them off even more coz it's like, look, it's literally not physically possible for me to look like this, you know, whatever, go away, these are daft standards. But when it comes to relationships it's just like, it affects you, even if you don't believe it and endorse it, it affects you and how you think about yourself and how you see yourself. and it's hard to carry that into starting relationships and having the confidence to approach people and be vulnerable.

Actually, being vulnerable as well, when you are so physically vulnerable. I, most people I know could beat me up if they wanted to, I couldn't stop them, you know, most people could hurt me. And I'm aware that taxis and taxi drivers start asking me questions about, ‘So, who do you live with?’ And I'm, OK. I'm very aware of the fact that I'm very physically vulnerable and I'm aware that in a relationship I could be taken advantage of. And I think that's not something a lot of other people have to think about.

AJ: I think even when I didn't have the fatigue, coz that's only come on, sort of, the last few years, and even when I didn't really have post traumatic stress yet, I'd already had the traumatic experiences that had let to me later developing post traumatic stress, which was sort of abuse. And it is, sort of, having had experiences like that, I would never, ever have a one-night stand with someone I didn't know, because, like, I don't know what they could do. And it's not that I wouldn't necessarily have been up for it, but it's, I didn't know I could be safe and so I wouldn't put myself at risk in that way and it's sort of sad, you know, especially like I did have a very, very high libido as a teen and it probably would have been, like, nice to just be able to do it and not worry about it. But, you know, I wasn't going to put myself at risk in that way.

GC: In the face of that, I have a last question, which is: What do you value about being a queer disabled person?

KRH: Well, like, we were thinking about spaces, I feel like, if I wasn't Deaf, if I wasn't, like, queer, I would just feel so much lost in this world, I think.

AJ: Yeah, it gives you a sense of identity.

KRH: Yeah.

BP: I think it's a strong part of my activism, particularly being part of LDPO. The two cross over very regularly. In terms of marching in Pride, doing the lot of it. That was the first time I'd ever marched in Pride and I nearly cried as I walked because it felt like the best thing in the entire world. I was like, this is so exciting and my friend was like, Becca, have you never been to Pride before? It was my first Pride, I was like, this is great, this is amazing. Albeit inaccessible. But that was fine, I could look past that to the fact that I was enjoying myself. I was knackered afterwards, coz it was a long walk. But, that's by the bye. I think a lot of my identities cross over and I'm proud of all of them, to a point, yeah.

LG: I think I'm a better person. And I'm not suggesting we should go about, like, giving people ME so they become better human beings [laughs]. But I do think I'm a better person for the experiences that I've had. I think I'm a kinder person, I think I'm a more understanding person, I think I'm a much more mature person and I like to think maybe I can use some of those experiences to make the world a better place. And I value these spaces, I value my community and my culture. I think that - we were talking earlier - is there such a thing as disability culture? I think there is, at least in a, you know, a limited sense. I really value the different people I get to know and the different sort of things I get to experience.

AJ: I feel like in a sense, disability culture is often kind of like, in an ideal world if everybody behaved in a way you would behave in sort of a space like that, then probably nobody would be disabled under the social model, you know, it's that kind of thing of like, the culture is that very open, kind of understanding and just like, you know, of course we'll all try and accommodate each other and it's not, like, a big deal [laughs].

Yeah, I think, I think definitely sort of the bad experiences that I've had have made me kind of a better and a more understanding person. I actually, I facilitate a peer support group for young people with mental health issues and I think that's been really great. And I feel like that is, especially with the peer support model where the idea is that, as facilitators you also have to be someone who's [unclear] those issues, you're not there to sort of come in from on high and tell people, this is what you should do even though I have no idea because I've never experienced it. It's like, this is what my experience has been. And I think that's been really valuable. I've been sort of quite fortunate that I've been able to access a lot of the support that I've needed, at least for my mental health, and because of that and, like, all the work that I've done on that, there's a lot that I can offer to other people who are sort of earlier on in that journey where, you know, even just helping them find resources, signposting them to places they can go to get support and sort of giving advice and stuff.

And I also, I really value being autistic in that I see the world in a different way and I, I feel like I, I get to enjoy the world in a different way to people who don't have autism and that's really special to me as well.

Yeah, and I think, with the LGBT side, because I'm sort of, I'm not cis and I'm not straight, like, I kind of feel like I get to sort of live in a more kind of open-minded space, because if I had been cis and straight, I'd be much more likely to be stuck in that, I kind of think of it as like a mainstream bubble where people just kind of assume that everyone's the same and everything's like this and, like, I've found that, there's more likely to be sort of a much less understanding of, like, feminism and like stuff like that as well. And, like, all that stuff, because I've experienced something different, I know that things don't have to be the way that they are. And it allows me to think more about how to see things differently again, how can we make things better and not just assume that, like, well, this is the way that it's always been, it's how it's always going to be and it's like, it doesn't have to be, actually.

KRH: Yeah.

[Break in recording]
Part 2.

LG: I think we know something really valuable about what it means to be human.

BP: Going back to the, I saw it on Twitter and I was like, I think I've [unclear] a new phrase [unclear], I get where it's coming from, is that you "find your tribe", that's the phrase I see on Twitter loads recently, it makes me cringe a little bit, but it sounds really like, OK, a bit of one of those phrases, but cool. Yeah, coz, like, for the majority of my life I have labelled as like weird and everything, and now I'm not weird, coz I've found my people, you've finally found your people, you know, you've found the people you identify with and who you get on with, and that kind of, your weirdness is embraced rather than being a problem.

AJ: Yeah, I feel like we're able to embrace a wider variety of people. And I think that's special.

GC: Brilliant. Thank you, everybody.