On Monday 9th November I went to the “Considering intimate lives: ways forward” event at St Mary’s Church in Sheffield organised as part of the ESRC Festival of Social Sciences and based on the project “Making Space for Intimate Citizenship”. (It’s taken me a while to get round to writing this event review, both because I have been a mixture of busy, seemingly worse than usual with my autism-related executive function issues, and affected by the weather recently, and because my eccentric sleep cycle meant that I only got about 3 hours sleep before getting up to get to the event. This resulted in me getting back utterly exhausted, going to bed at about 8pm and sleeping right through until 12 the next day (dashing any hopes of “resetting” to an earlier cycle). It also seemingly resulted in a bit of a “memory wipe” effect, and thus memories of the event have only gradually come back to me – however, revisiting my notes I do remember enough to be able to write more or less what I wanted to! And I wrote that last sentence a couple of weeks ago, before I decided to also review some of the other events I went to in November…)
I was expecting the focus of the event to be largely on intimate relationships – such as friendships and romantic/sexual partnerships – and how disability influences the ways people manage or negotiate them (and therefore that it would likely interest me more from a personal and emotional perspective than from a “PhD” one). However, while this was part of the focus, the event ended up having a lot more relevance to my PhD topic than I thought it would, as quite a lot of the discussion (at least on my table – the extent to which that was because of my presence could be questioned!) ended up revolving around themes of assistance, autonomy and (in(ter))dependence.
The event opened with Kirsty Liddiard defining the theme of “intimate citizenship” as the right to “equality, fairness and justice” in people’s intimate lives. This could be characterised as a “right to have relationships” – and/or to be supported to maintain relationships – but this might be an incomplete or problematic definition, as such a right needs to be balanced against the right to refuse relationships – however, a very good point was made that in the lives of disabled people (perhaps particularly those with cognitive or intellectual impairments) rights are often defined exclusively negatively or in terms of “protection” – for example, the right to say no to sex or pregnancy, but not necessarily to say yes.
After the introduction, Grace Parry spoke about autism and asexuality, covering the commonly criticised assumption that disabled people have no sexuality and calling for critiques of it not to fall into the opposite assumption, i.e. that “everyone” wants a sexual life. Despite not being asexual, a lot of what Grace said resonated strongly with me, particularly the point that sex is not the only form of intimacy, or even of physical intimacy, and that it is possible to find many forms of intimacy outside of normative categories and boundaries. (Another presentation by Grace Parry can be seen here on YouTube, although I haven’t listened to all of it, so I’m not certain if it covers the same points. For some other discussions of the intersection of disability and asexuality, see here and here.)
(A related point that came up in a later discussion was that “intimacy” is often used as a euphemism for sex – a synecdoche that is highlighted as problematic when asexual people are considered, but that I think is problematic even for people who do desire sexual intimacy, as this is very rarely the only type of intimacy that a person desires.)
A short film about a young trans man with a learning disability and his relationships with his family and community set off discussion about the intersections of gender and disability, and how combinations of different stereotypes and stigmas can produce ambiguous spaces of expression where sometimes one set of stereotypes can unintentionally “free” people from others, although this “freedom” is troubled and conditional – an example that came up in conversation at the table I was at was that playing with gender expression might be more “accepted” in someone seen as having a “profound impairment” – thus seen as “innocent”, childlike and not expected to have a “serious” sexuality or gender identity – than in someone categorised as having a “milder” impairment, where more pathologising narratives about “deviance” and “dangerousness” might come into play. The role of families, and particularly parents for young adults, in supporting (or not supporting) disabled people’s freedom and access to community was also highlighted by this, giving me another occasion to use my often-used (and possibly not original to me!) line that some disabled people’s (implied here non-disabled, although of course that’s not always the case) parents are their best allies, some disabled people’s parents are their worst oppressors, but for most – including me – the truth is somewhere in between those poles. (I’m fairly sure that the same is true for queer and/or trans people’s straight and/or cis parents…)
The audience of the event was quite mixed – including the obvious Disability Studies academics, but also disabled people from outside the academy, including members of self-advocacy groups, and people who worked in various kinds of “service” positions for/with disabled people (these categories of course being not necessarily mutually exclusive). Several of the people at my discussion table worked for “care” agencies or in residential care settings, which made some parts of the discussion uncomfortable for me – even though these people were open-minded and seemingly really appreciated my Disabled People’s Movement perspective on issues such as “vulnerability”, it felt a bit scary taking that perspective when confronted by the kind of language (about “risk”, “appropriateness”, etc.) that even in the “better” agencies (and the one that several of the people at my table worked for, the name of which I now can’t remember, genuinely did seem to be one of the better ones as these things go) people seem to be trained into using.
There were mixed thoughts about the use of the term “citizenship” – one person on my table saw it as “too academic”, and as an example of “normal everyday things” being given “fancy labels”. For me, although I see a lot of people talking about “citizenship” in the Disability Studies field, it’s a term I always find a bit odd and am wary of because it’s so closely associated with nation-states, and it feels like a term that inevitably has an excluded “other” of the non-citizen. As far as I could tell “intimate citizenship” was not here being used to mean citizenship of a particular state, but in a broader sense of equal membership in community, but I can’t help wondering if there could be a better term for this that isn’t so associated with statist, implicitly nationalist and racist models of ‘belonging’ (although I have to be honest and say that I don’t know what term that could be).
There was a lot of interesting discussion about the intersections and conflicts between the roles of PAs/”support workers”/people otherwise providing support to disabled people in a paid or “professional” capacity and those of friends, lovers or more generally “peers” in reciprocal relationships, parts of which reminded me of the work of both Liz Ellis and Sarah Woodin in their respective PhD theses (Sarah Woodin’s PhD thesis can be downloaded from the Leeds Disability studies archive – I’m not sure whether Liz’s is anywhere online). One issue that came up was that of PAs/”support workers”/etc (often unintentionally) “taking the place of” peer relationships in many disabled people’s lives – possibly reflecting a confusion on the part of service providers between the need for support to access places, activities or “the community” more generally (e.g. if someone needs someone to accompany them because of anxiety or cognitive/memory impairment making it difficult or impossible to navigate walking routes or public transport, or needs a PA to assist with eating, going to the toilet or other similar things while “out” at a dinner party, the cinema, theatre or whatever) and the need for friendships and a “social life” in the sense of having peers to go to places or do activities with. This resonated with some of my findings from my PhD interviews – for example, several people talked about the difficulty of negotiating what a PA’s role should be when with their employer in public places or in social settings such as friends’ houses, pubs or restaurants, and one former PA I interviewed talked about the difficulty her former employer had in meeting potential partners because people saw the employer and PA together and assumed that they were a couple.
The question was raised of whether support can do more harm than good by discouraging the formation of “true”, reciprocal friendships – one person at my table referred to this as “over-supporting” people, a term which I found somewhat problematic because it felt associated with the paradigm of support work being seen as about “developing” people to reach a point where they would no longer need that support (which is possibly particularly common in services aimed at people with learning difficulties and/or mental health conditions, but I did encounter it in one PA I interviewed, despite the fact that his employer was a person with a progressive physical impairment!). This is of course associated with ideological paradigms of rehabilitation and normalisation, but – as was also talked about on my table – is also inevitably linked to cost-cutting agendas which have only intensified under current governmental regimes of austerity. (The term “over-supporting” also suggests that it is the quantity of support being provided that is the problem, whereas I would suggest that it is the appropriateness of the type of support that is often the problem, and that rather than assuming support should reduce over time, a starting point for better approach to solving this would be making sure that the roles and boundaries of support are defined so as to facilitate what disabled people actually want.)
As at so many of these type of events, there were a lot of other very interesting-sounding things that, from the notes I took, were apparently discussed, but that I don’t have detailed memory of!
Overall, although I was perhaps not in the best state to take it all in, I thought this was a highly stimulating event with wide-ranging relevance, and although some conversations with people with very different standpoints were a bit uncomfortable, the bringing together of different perspectives was important, and potentially could have had some meaningful influence (the people from the care agency did seem to genuinely appreciate my “independent living”/Disabled People’s Movement perspectives on “care” and risk, which they possibly hadn’t encountered before), and I will definitely keep an eye out for more events and/or publications from this project.