Where are Support Needs in Sexual Citizenship?

On the 3rd of April CDS hosted the event ‘Sexual Politics in Diverse Communities: Conversations about Theory, Methodology, and Practice’ together with CIGS (Centre for Interdisciplinary Gender Studies). The day was organised by CDS-er Dr Julia Bahner (now alumni) to showcase ground-breaking new research in the field of sexual politics, including themes relating to intimate/sexual citizenship, a/sexualities, gender, intersectionality, embodiment, dis/ability, sex work and violence. Here we share Julia Bahner’s talk. There are no subtitles (please note that we are looking into this for the future). But there is a transcript, which is below:

Where are Support Needs in Sexual Citizenship? Empirically-based theory development in an international perspective.
Dr Julia Bahner, Research Fellow, School of Sociology and Social Policy, University of Leeds

The concept of sexual citizenship does not sufficiently acknowledge some disabled people’s needs for sexual support. Furthermore, such issues are largely invisible in disability and sexual health policies, as well as in disability rights advocacy. Drawing on findings from an international research project, this paper highlights the contextual nature of disabled people’s opportunities for being supported in their sexual expression and explorations.

(this video was cut short due to technical issues with the recording)

On the 3rd of April CDS hosted the event ‘Sexual Politics in Diverse Communities: Conversations about Theory, Methodology, and Practice’ together with CIGS (Centre for Interdisciplinary Gender Studies). The day was organised by CDS-er Dr Julia Bahner (now alumni) to showcase ground-breaking new research in the field of sexual politics, including themes relating to intimate/sexual citizenship, a/sexualities, gender, intersectionality, embodiment, dis/ability, sex work and violence. Here we share Julia Bahner’s talk. There are no subtitles (please note that we are looking into this for the future). But there is a transcript here:https://disability-studies.leeds.ac.uk/where-are-support-needs-in-sexual-citizenship/

Posted by Centre for Disability Studies, University of Leeds on Thursday, June 20, 2019

 

Transcript (verbatim):

Julia: I will be talking about this project on sexual citizenship and disability, which is almost to – coming to an end now. And this is a comparison between England, the Netherlands and the state of New South Wales in Australia, where I have done fieldwork: both policy analysis, so looking at disability policies, sexual health policies and anything related to sexuality and disability, as well as interviewing organisations that work specifically with sexuality and disability issues, whether they are disabled people’s organisations, sexual health organisations, and so on. In the second part of the project, I also did – or I’m actually doing still, workshops with the research participants, the organisations, and in some cases the policy makers, about how they would like to develop policies, or work, or different things, advocacy around sexuality and disability. And I will give some examples from mostly England, also a little bit from Australia, in this presentation, but I have an article coming out any day now, which is called ‘Mapping the Terrain of Sexuality and Disability’, so if you’re interested in that, just let me know, or follow on Twitter.

So my starting point for looking at sexuality and disability is similar to Kirsty’s, I admire your work massively, as we know, and it’s this kind of interactionist, and this social constructivist notion around sexuality, so looking at how, like in this picture, two persons are embracing, kissing, and there are three bubbles around them, and the bubbles say ‘cultural’, ‘personal’ and ‘social’. So how these different levels and dimensions around sexuality interact and intersect in different ways, to create this very complex phenomenon that is sexuality and sexual experiences. So how people’s individual desires, feelings and values around sexuality and what they want to do in a sexual situation, how that interacts with the other person or person’s desires and individual feelings, and the social context, whether it’s a subculture, or a society with laws, policies, norms around sexuality. How all this interacts – and in this project I’m looking, as I said, specifically at policies, laws, and how they impact upon disabled people’s experiences and opportunities for sexual – sexuality, sexual expression, and specifically to have sexual support when needed.

So what is sexual support then? I take independent living as the starting point, which is the ideology for a large part of the disabled people’s movement, of how support services in general should be organised, so starting from the disabled person’s own wishes and thoughts around what they want in their life. So this challenges the definition of ‘independence’, in inverted commas, as the ability to cope on one’s own without external support, and independent living is therefore also a daily demonstration of a human rights-based disability policy. So how do these abstract notions around human rights and disability rights actually translate into practice, into disabled people’s lives when receiving support and organising their support? And it’s also possible through the combination of various environmental and individual factors that allow disabled people to have control over their lives, so it’s not only the personal, but also how society is built, how it is often inaccessible to a lot of disabled people, and all of these different factors that influence the daily receivement of support. And this includes the opportunity to make real choices and decisions regarding where, with whom and how to live. So this is from the European Network on Independent Living, a disabled people’s organisation, ENIL, and it’s kind of the starting point also for how we can view sexual support, because essentially it’s part of many disabled people’s daily support needs.

So one of the persons who introduced independent living to Sweden was this man who is pictured here, Adolf Ratzka, and he wrote an article about sexuality specifically, but I have to say that looking through the independent living literature, this is one of the few pieces that I have found that discusses sexuality. So he said that: “Sexuality is the result of the whole person’s life situation. Without the prerequisites for self-esteem and personal independence, there can be no sound sexuality. For many of us who have extensive disabilities, our sexual liberation does not so much depend on sex counselling or mechanical sex aids, but on the availability of tax-funded personal assistance services, which empower us to take control over our lives.” So of course, if you do not have access to independent living or support services, it will be much more difficult to also express your sexuality, explore your body, and have the supports that you need to engage in different sexual subcultures, or whatever you want to do in your life. So independent living is kind of the foundation.

And thirdly, when we go into sexual support in practice, here are some examples from a disabled woman psychologist in the US, who in 2001 wrote an article about disabled people’s sexual support opportunities. And she made this kind of model for how sexual support can be understood relating to different types of impairment. So for example, mobility-related impairments, certain activities around sexual supports can be removing clothes, positioning the person for masturbation or for partner sex, transferring in and out of wheelchair onto floor, couch or bed, stimulating partner’s body, or own body, cleaning up when getting redressed, using birth control, for example condoms, diaphragm, birth control pills, and for visual impairments it can be about preparations for sex, for example transportation to and from partner’s location, purchasing appropriate condoms, discussion and interpretation of sexual position, often only drawn in books. For hearing impairment it can be about sign language interpretation during sexual activity with a hearing partner, phone interpretation if TTY or other telecommunications services are not available. For developmental or cognitive impairments it can be about cognitive and emotional interpretation of interpersonal interaction, cueing to remind people to use birth control, discussion of appropriate sexual boundaries with partners, and supported decision made [another skip here? 07:56] with whom. And of course these can overlap depending on impairments, and it can be a lot of different things other than this as well, there is a – how these activities or supports are actually supports that the person usually has in their daily life, in so-called non-sexual situation. So sexual support can in turn, in that sense, be framed as something that is happening in the daily life, but that society or persons have decided that in a sexual situation it’s different, it’s a different kind of activity, although it is the same actual action or activity. For example, menstrual care or hygiene. Anything other that is also very – can be very emotional, or intimate to the person, that is happening daily. But then when it – it’s sex, it suddenly becomes a lot more uncomfortable for a lot of staff. Also service users, as well.

So when I interviewed the sexuality and disability organisations, I asked about how they work with these issues and what their goals are in terms of their advocacy, and one person from Enhance the UK said that “We want to give disabled people the tools and the resources to feel sexually confident and comfortable. Educating people and letting them know the rights and the responsibilities, and the opportunities that are out there for them.” Cause this is actually one of the first things that a lot of disabled people… maybe don’t know that they have a right to this kind of support, if it’s possible in that policy context. They don’t know how their body works, what their sexuality is, because they didn’t have that proper sex education growing up. So it’s a lot of things in preparation, actually, for receiving sexual support that many disabled people need other people as well, in terms of figuring out their sexualities and how their bodies work and what they find pleasurable at all, before knowing what kind of support they want or need.

So if I move on to the concept of sexual citizenship, it can be seen as a system of rights according to Diane Richardson, and her concept, and a lot of other researchers who have studied sexual citizenship have started in the LGBT rights movements’ claims and advocacy for sexual rights. So first of all it can be about practice, so the right to one’s chosen sexual practices, and how that shouldn’t be decided by any law or policy, what is legal or not. Of course not [skip? 11:04] even things that are of course illegal, but previously, for example homosexual acts were illegal, so things like that were part of their advocacy. And similarly with identity, so the right to self-definition and the development of individual identities, so being able to identify as an LGBT person, and not being persecuted for that, which is still the case in many countries in the world today. Allowed – with having the right to public validation of one’s sexual relationships.

But if we look at this from a disability perspective, we can see that identity maybe is a central one here, where the identity of a sexual person to begin with is actually what many disabled people struggle with today, and are not seen as sexual in policies, which I will show some examples of as well, and certainly sexual relationships or practices, because it’s not even acknowledged in the facility where I am living or where I receive my support. And if we look at different policy contexts, what are recognised as sexual rights or demands? And i would say that, for disabled people a lot of the rights and demands are not yet formulated as rights and demands, and are not really recognised in policies yet. And certain rights and demands, how should they be secured in policies and laws without them being too regulated, without them being too overly framed in policies on how people can or cannot have sex. So this is also a problem that many people feel around having their rights and demands written into policies. And then of course comes the politics and economics of it all. Where are the social and welfare provisions needed to meet these recognised sexual so-called needs? What is needed to frame it within independent living services, for example?

So another organisation that I interviewed, SWAD, Sex With A Difference, they said that “In our opinion, stuff like sex and intimacy has got to go with things like personal independent application forms. It has to be included as a question when social workers are doing their care needs assessments. Until they are set in place by the legal things to do with the government and councils, I don’t think that there will be very much change.” So this is one of their issues that they are advocating for, so including sexual needs in all the different types of assessment procedures that disabled people have to go through in their live [skip? 14:01] in our community, in our society, which very much regulates disabled people’s lives in different ways. And SWAD feels that unless sex is actually put down there as a need, or as something to include when speaking with disabled people about their lives and independent living needs, then it can be much more difficult for disabled people to dare asking those questions, to know whether it’s allowed, to know whether there are available supports, and of course one problem is that SWAD also works with is educating social workers and occupational therapists and other relevant professionals on how to discuss these issues, because often they will not have [skip? 14:44] these are education. So it’s yet again a wider problem that we’re speaking of.

But there aren’t many of the bigger disability rights organisations that are dealing with sexuality issues, so I was a bit surprised when I saw that Scope, one of the big disability charities, did a campaign around sex and disability a while ago. But when I interviewed the person, they said that “I think from a policy perspective it’s never really come up as one of our critical areas, because we’re so focused on areas such as employment and benefits and education and things like that”. And in fact, now that I did the second part of the project with the workshops, and I asked if they wanted to participate in that as well, they said “no, we’ve moved on from sexuality, so [laughter] it’s no longer on our agenda”. And so it’s interesting to see how, when the person actually said that for the campaign, it was a deliberate strategy to work with sexuality, because it’s sexy, it sells, sex sells. And it worked, it built their reputation, and their – how other people see Scope as a liberal or inclusive disability charity. But it also says something about how sex is used somehow as a tool for other things than actually supporting disabled people’s rights, because when I spoke – when I asked about how they were working with sex and disability in their residential facilities, and in their services, they said that ‘oh, well, actually that’s not something that we are working with’, so that’s why we’re not really engaging more, because we can’t – you can’t preach something and then not do it in practice. So in a way we can agree that it’s maybe lies, they’re not just saying too much, but also it’s a bit disappointing as well that they are mostly the smaller disability organisations that work around sexuality and disability, and it takes its toll, because government does not fund these organisations very well, there aren’t much funding in terms of sexuality and disability in general, so of course the big charities, they go for these big policy issues which are more often funded as well.

So looking at UK disability policy, I tried very hard to interview people at the office for dis [skip? 17:26] – it wasn’t easy! [laughter] But in the end I found someone who was actually leaving the office, so they were [laughter] So this is not an official statement. This is more of a personal statement from the person, because I had been looking at the disability policies, which are no longer actually existing, Fulfilling Potential, and I didn’t find much around sexuality, although a lot about independent living and allowing disabled people to fulfil their potential and so on. And the person said that: “Disabled people’s sexuality hasn’t really made the top of our agenda here. I suppose if we’re thinking about awareness campaigns the things that would be higher on the priority list would be awareness campaigns about disabled people’s abilities in employment, about increasing representation of disabled people, in media and on boards, and politically as well.” So disabled – sexuality hasn’t really been a core issue, but actually neither has those disability organisations that participated in the policy process put forward sexuality as an issue that they wanted to have included in the policy. So it’s kind of – I wouldn’t blame the Office for Disability Issues overly much, because it’s also to do with these larger disability organisations that are not putting this on their agenda, and the smaller ones that are dealing with sexuality and disability, they’re not being invited to this context, so there is a structural problem here as well in terms of how these policy processes work.

If we look at New South Wales, in Australia, which is one of the more liberal states, you could say, which is one of the reasons that I wanted to do my fieldwork there, they have a specific disability inclusion act, which is a bit different from the federal one for Australia, as a whole, which doesn’t mention sexuality. But this one in New South Wales, it does, and it says that “people with disability have the right to realise their physical, social, sexual, reproductive, emotional and intellectual capacities”. And this is the fourth general principle of the disability policy. So it is there, it is framed as one of the core issues for disabled people’s rights in New South Wales, and this has allowed the family and community services to develop a guide for practitioners working in disability services to support disabled people’s sexual rights and sexual expression in disability services.

[recording ends 20:19]