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This transcript has been lightly edited for clarity

Wai: So, Claire Ryan, sexuality and disability: what's that all about?

Claire: What is it all about? Well, no one knows what it's about because no one talks about it, quite frankly. [laughs] My work that I do is with disabled people, talking to them about sexuality and sexual expression, supporting people to, I guess, lead the lives that most of us lead, but it would seem that disabled people struggle a whole lot more because of prejudice and all of that sort of stuff. So I tend to say I work in the sex industry, which can mean that I work with a variety of people from educationists like Family Planning, through to people who do actually work in the sex industry: sex workers, madams, et cetera. Yeah.

Wai: So, you were saying that people often don't talk about sexuality and disability in the same sentence. Why is that? What are some of the blocks or the prejudices or stigmas around those two topics converging?

Claire: Probably degrees of deviancy, as in: if you're attracted to a disabled person, then either they're deviant or you're deviant in your attraction to them, which is untrue. There are certainly disabled people who are deviant; some will identify as that. But I think in our society we spend a lot of time trying to look for perfection within our sexualities, and if you step outside of that and present in a different way, then that seems to be the predominant thing that people look at, rather than the person. So we tend to call disabled people disabled people, first off, or we call them clients or patients, so it's very asexualizing, and some people don't even make it onto that spectrum – don't even be referred to as bachelors or spinsters; they're just "those poor people," some of them. So there's lots of invisibility, and I think it's all about fear.

Wai: So, how did you get into doing this stuff?

Claire: Well I started working for IHC back in 1985, and it was through my own sort of coming-out process that I realized that disabled people don't get to come out around their sexuality. And I've never understood why this group of people that are often described as caring and loving and warm and all that sort of stuff, don't get to express their sexuality.

So I went to a conference years ago and these two guys were doing a presentation. They were working with a young guy who has Down's Syndrome, who was a bit of a sexual offender. They were getting him to dress up as The Karate Kid, and he'd come in and karate chop these two anatomically correct dolls, one who was abusing the other. And these therapists thought they were doing a really great job, and the idea of it was good, but they were kind of replacing one form of violence with another. And of course this boy didn't stop being The Karate Kid when he left the room. [laughs]

So it got me thinking about how distorted the whole thing [is] around all the assumptions we make around people's understanding of sexuality. And for that boy, perhaps he just didn't know about boundaries and understanding about his body and all that sort of stuff. It wasn't typical for the people I was working with to have any education about sexuality. They weren't referred to as people; they were called service users in those days, or clients.

So I just kind of went from there, and I started... IHC were fantastic to work for because I could do a variety of jobs and managed to create a position where I was a relationships and sexuality advisor, which was thrown back in my face quite a few times from my partners when we'd be having disagreements, because apparently that meant I knew everything about relationships. I'd like to stress that I was an advisor, not an expert.

But in that role I got to develop a Relationships in Sexuality Policy, which was quite pioneering for New Zealand. I thought that when I was given that task I'd just go cut and paste someone else's policy, but it would appear that there weren't any in New Zealand. And it's interesting that you'd even have to have a policy on sexuality in the human-service industry anyway.

So we created this policy which was supposed to be a year's project, then it took five years just because it was a hugely emotive thing to do, and it was challenging for families, it was challenging for disabled people. But now it's been adopted by a place in New York. New York has almost copied it word-for-word, which I think is against the law. And other places now have seen the importance of having that, because it creates some transparency and it means that you have to do something about sexuality. And really, it's just about acknowledging people's gender and who they are and how they stand in the world. It's not about putting people in trucks and sending them over to the local brothel to have sex; it's not about that. It's about just being a bit human.

Wai: So you're Wellington based, but the work that you do is national.

Claire: Yes.

Wai: Did you grow up in Wellington?

Claire: No, I grew up in Christchurch, The Garden City.

[laughter]

Wai: And how was that?

Claire: How was that? Christchurch is an interesting place. I have a friend who calls it "the city of hate." But, it's a pretty place. It's got lovely gardens. No, I enjoyed growing up in Christchurch. I grew up in a great family and had a very happy life there. It was very ordinary. Well... yeah, it was ordinary. I did a lot of pony club and stuff. I was a great pony club girl.

Wai: And did you come out while you were living at home, or was it later?

Claire: No, it was later on. I remember I went to an all-girls Catholic school, so it was pretty likely that something was going to happen. [laughs]

Wai: [laughing] That is an assumption and a stereotype!

Claire: Yes, isn't it? It was great being taught by women, and very dominant, powerful women. Some of them had excelled in going to bad-mood school. Anyway, I won't go there.

I remember in my later years at school, someone suggesting that I might be a lesbian, and I was... [interrupted]

Wai: Was it a negative thing or just a general suggestion?

Claire: Well, it was kind of like being given to me as an option. And I remember thinking, oh no, I don't want to be that; it's far too obvious – like, everyone's a lesbian, so I'm not going to be one. So I think I spent a lot of time... I won't say I was asexual because I was always very interested in sexuality, but I didn't have a partner or a lover or anyone until I was 25, which would have pleased the nuns. Usually, probably, if I was still in that state, I was asked to join the convent when I left school, as a career option. [laughs]

Wai: Are you glad you didn't?

Claire: I'm really glad I didn't, mainly because I have quite big hair and I don't think I'd get the veil over it. But, yeah, it was not going to be an option to join the convent.

My father did suggest it when I came out, that I could have, at least in the old days, joined the convent, which was an interesting insight into what he knew about nuns. [laughs]

Wai: So were your family sweet as with you when you came out?

Claire: Oh no.

Wai: Were you all right with your coming out? Did you have to kind of struggle with anything, or you just never got around to it, or...?

Claire: [laughs] I guess I told people, and I did the whole thing of draping myself in all sorts of symbols, you know, the woman's symbols hanging off my ear. I guess it's that thing of trying to show people how you are, more to get sort of validated rather than... I don't think anyone came up and congratulated me on now identifying as a lesbian, and I don't think I ever really was a lesbian. I mean, I didn't know what to "come out" as, so that seems like a good title. It's a nice word. It's kind of a luscious word.

Wai: And now do you identify?

Claire: Yeah, I identify as queer. Yeah, it's a work in progress. I guess for a while I was gender queer even though my gender isn't...I'm not planning to change my birth gender. I identify as high femme, which I think some women think I'm trying to be superior to them. I probably am on some levels, but it kind of means, for me, uber-femme, and it's more about who I'm attracted to, which is masculine, but not biological men. It's very fluid, I guess. I'm not attracted to biological women as partners, as such, but if they add a layer of masculinity on top of that, or anyone who's bothered to know who they are or look at their gender or whatever, gets my attention. So, I'm sorry if people haven't done that. I'll say hello, but I'll probably move on.

Wai: So these notions of fluid gender and different expressions of gender, have you seen those change over the last 2 years, 5 years, 10 years?

Claire: Mm. Well, even for myself I've probably had three coming outs. The first one was being a lesbian, which was exciting. There were great days of mullet haircuts, I guess; oh, what's her name? Judy Small music.

And so I moved on from that. I remember going out to dinner once with a couple of butch-identifying people, and a woman who was femme, and I was there as kind of like the "just me." I hate that on dating websites where people will say, "I'm not butch or fem, I'm just me," which I think is saying... I don't know. It's my judgment about people, but I was doing a bit of a "just me" phase.

But anyway, we had a conversation about who at the table was what, and everyone agreed at the table that I was femme, and I was furious. I was just like, I am bloody not! because I understood femme to mean weak and pathetic and all the stereotypes of what some people might see as femininity. And then it was one of those things where someone names the truth and you get a wee bit defensive about it.

And so it took a lot of courage to step out of how I was, because I don't always find the queer community very welcoming of gender types. So for me to be wearing skirts or wearing lipstick, and I wasn't a lipstick lesbian, I was identifying as femme. And I just got a whole lot of power and courage from that. I used to be terrified of going to pubs and being around biological men. Now, going in with this new skin on, I just didn't even notice that they were there. It was very interesting, very important.

I remember reading about butch and femme stuff, and my sister who's my favorite sister, she's very straight, and I was reading this stuff and crying, and going, "Oh! I've just been reading about butch and femme," and sort of getting all political about gender, and she was kind of going: Oh yeah? Oh, that's nice. [laughs] I was having this big political femme moment. So that was that.

And probably in the last five years I have identified as high-femme, and that was just a move in terms of solidarity of where I stand. I don't know where I'll go from here. I wouldn't mind being a drag queen or perhaps a trans woman. I like that every time I think I've just settled, something else comes along. So, it's a work in progress.

So, has it changed? Yeah, I think it has. I think even the number of trans identified people in New Zealand has increased hugely, and the way people are doing it, too, is really cool. It's not all about...

I remember in the '70s or '80s, if any man went on holiday to Sydney, everyone used to say they were going over for the operation, because they would leave as Stan and come back as Stephanie, that sort of thing. Now people can be Stephanie and they don't have to go to Sydney; they can just sort of cruise around and identify however they like. So, that's cool. That's good.

Wai: You talked a little bit about when you were coming out, or through the last however many years, that kind of pressure to conform, or being judged over whatever in the LGBTI communities or queer communities and that kind of thing, and you also talked a little bit about notions of perfection with bodies and people in regards to everyone's sexualities, or just your ability to be a sexual person in the world. Do you think that the queer communities would be better accepting or more tolerant or more understanding of people with disabilities? What's been your experience with that world?

Claire: Yeah, I think so. I think the types of people who do the work in the human service or disabilities sectors – it attracts people of difference because I think... I've met a lot of people who are transgendered or queer or from a variety of backgrounds because it's a diverse... So, it's more likely that the disability sector is welcoming of queer people. I don't know if it's the other way around. I don't know what it would be like – I mean, this is my stereotype – to be a disabled gay man going to a nightclub where you can't sort of take your shirt off and have the abs, whatever you call it, those muscles showing, and be all cut and gorgeous. There's those kinds of challenges. But it's all based on fear, isn't it? We can all kind of get scared of ourselves and who we are.

My experience with the – I can't even remember all the letters – LGBTI; the queer community with all those letters.

Wai: …TQF.

[laughing]

Claire: My friend, Philip Patston, who's known in New Zealand, we hang out a lot, and for two years in a row we went to the launch of – it wasn't the Hero Parade, but what evolves after it – the Hero Festival, I think, and it was the launch of that. And both times we went along and he couldn't get in, and the first time... [interrupted]

Wai: What do you mean, he couldn't get in?

Claire: There was no access for him.

Wai: Yeah. They just didn't even consider it.

Claire: So clearly, they never thought that anyone in a wheelchair would be coming along.

And after the first event, Philip, and rightly so, put in a complaint to, I think it was to GABA or someone, who was sympathetic and kind of just, oh, gosh yeah! No, that's terrible!

And the year that Philip complained it was in a ground-level venue, but it was still really awkward to get in. So they fixed it by having the venue next year in a place that had stairs in it, so he really couldn't go. And that's interesting because it doesn't just mean that Philip can't go, it means that I can't go. You know, as if I'm going to say, look, I'll go and see what's going on and come back and report. It's kind of like going to a restaurant and you have to go and look what's in the cabinet and come back and tell people. I wasn't going to be doing that.

And it was just a really good example of how difference, within a different community, is not considered. And yeah, I think notions of beauty and who's attractive, are certainly when disabled people identify as being queer. I get asked a lot to come and work with people who are disabled who might be saying that they're gay or lesbian or transgendered or whatever. I've never been asked to come and work with someone who might be identifying as straight, so we're still in that thing of just belief that those people, and especially people with intellectual impairment, would really understand what it is to be queer or whatever. I don't understand what it is to be queer, I just know that I see a certain type of person and parts of my body react differently or I feel good. Yeah, I think it's all a lot of rubbish a lot of the time. You are just how you are. You're just "me."

There's far too many… I've supported two disabled people, to start their transition around gender, and the battles that they have have been monumental. It's amazing that they still are around. The endocrinologists are taking people on and off – well, one trans woman – on and off her hormones over a period of 20-plus years. And because she would see a different endocrinologist each time, she would be treated differently. There was no consistency, and because she didn't dress as a female, she wasn't believed to be a trans woman because it must be her intellectual impairments that are making her do all that stuff. It was just rubbish.

I don't know if those experiences could be similar for people without intellectual impairment. I think it's the probably the medical profession on some levels, but it seemed a whole lot harder.

Wai: So with a lot of the work that you've done around sexuality and disability, what have the responses been like? Can people get their heads around it, or is it one of these things where you do a workshop and they're like, oh yeah, cool?

Claire: It's kind of like everyone can see the point of it, it's just what to do about it? It becomes a problem. People talk about the issues around disability and sexuality, disabled people don't have sexuality, they have issues with it, whereas the rest of us get up and get on with our day, that sort of thing. And I think it is really challenging. It's a mindset thing about...

You know, there's lots of discussion around vulnerability. I was talking with some professionals about this online recently, and the assumption is that disabled people are vulnerable, and there are some people who are. But the assumption was that being vulnerable was a negative thing, and in fact when you're vulnerable there are a whole lot of possibilities for really nice nurturing and closeness that could happen, because if you're not vulnerable then that part of your life can be overlooked.

A lot of what goes on in the disability sector, I've noticed over my 25 years of being a part of it, is about fear. It's things like people now, or some of the government agencies, their standards are things like when disabled people are supported to have showers, that support workers need to wear gumboots and aprons and gloves. So you've almost got this kind of freezing worker coming towards you to wash your body.

And a guy I know used to say, or talked about, how the great thing about him going to see a sex worker is that she didn't wear any gloves when she touched him, and he found that incredibly exciting because everyone's always touched him...when they've touched his body they put gloves on like they're going to catch cerebral palsy.

So, it's getting back to some of those basics such as getting rid of the fear and just always swapping places and thinking, if it was me on that changing table in the bathroom having someone take my clothes off, how would I want that to happen, and how enhancing is that of my gender and who I am? And if you are really attracted to a certain gender, that might be really embarrassing for you to have someone support you around using the toilet or whatever. It's thinking about those sorts of things. That's more in my workshops – I try to get people to think about what they think about stuff rather than tell them what they should be doing, and that usually means people have to be quite self-analyzing of their own behavior and their own sexuality, which of course raises a whole lot of issues for people sometimes.

Wai: So, what could queer communities or LGBTI communities – what could we think about?

Claire: Well, that Philip...

Wai: Wheelchair access, for a start!

[laughter]

Claire: Yeah, that would be nice. If you go and visit Philip Patston's websites – would you like some of those to look at? www.diversitynz.co.nz . On there, Philip has got some links to some of his other websites, one of which is WISE SPECIES.

Philip has moved on from the social model of disability and thinking. The social model is all about [the idea] that disability is a social construct. So, people have impairments, but when they get to a set of stairs at the launch of the festival they become disabled because they can't get up the stairs, and it's because of the lack of thinking. I guess in everything that's organized now, in everything that you do you should expect that people of all sorts of diversity are going to come along. It's about: if you can't cater for that person's needs that it's not a panic, and it's not their fault, and it's not something that they have to fix. It's quite gracious just to say: Yup, we really mucked that up. Next year can you help us get it right? And talking to the people who actually have those experiences, as well.

So Philip will talk about how we all have common experiences of the world, but there are some people that have unique experiences of it. So maybe within the LGBTI...ZKY [laughs] community we would look for and invite uniqueness and be prepared for that to come in many different shapes and forms, and just be prepared to learn from it or we're never going to get it right.

For me, sometimes as a bigger woman coming along and sitting in a chair that has arms on the side of it, and I stand up and that chair is still attached to me – that's my unique experience of the world. And it's not always about the big stuff; it's just about creating environments. And sometimes it's just about that; it's just about being nice to people. I find it really difficult when I go to... We all go to an event because our commonality is about who we happen to sleep with, and sometimes people have been just so unfriendly, and it's kind of like we're all competing for the same person or thing, or whatever.

Wai: That's because sometimes we are.

[laughing]

Claire: Yeah, sometimes we are. And I guess it's hard when I win all the time. I guess that's why people react to me in such a way. No, but it's just that we're all a wee bit suspicious of each other, and I can remember when the [homosexual] law reform was coming through, but I think that there was something really good about being queer being against the law. I kind of wish it was still that way because there is some power in being the underdog. There was some kind of unifying factor. I remember talking to someone on a line once; it was a pick-up line of mine that didn't go too well.

Wai: What was it?

Claire: She was saying to me something about being marginalized, and I said I actually quite liked being marginalized because it gave me a sense of purpose and solidarity, and I didn't see it as a negative thing. I quite liked the fact that if someone wanted to marginalize me, they saw that I was different to them, and that was quite important to me. I don't want to be the same, and I think that's what I see hit me in the queer community.

I think it's great that people want to get married, but I wasn't actually going to go out and protest about the fact that I couldn't, because I kind of liked the fact that I couldn't because it, again, made me have to think about what I really want. I don't always have to have the same rights as everyone else, for me, but I know it's important for other people.

And I think that's what's good about the disability sector is it's still talk about a marginalized group; we haven't really come a long way in terms of our thinking around disability or uniqueness. So it's a very cool community to be a part of, because there are some amazing, amazing people with amazing resilience and insight into the world, who just do their stuff and they don't have to have a parade or a festival about it.

And I guess the disability arts is the emerging way that people who are activists are getting their message across, which is a really cool way of doing it. Pretty peaceful; or some of the performances are quite angry. But that seems like a very intelligent way of getting a message across.

Wai: Well, fantastic! Thanks heaps for your time and for yarning with us.

Transcript by cyberscrivener.com