Events I went to in November #3: Re-imagining Toilets

The last event I went to in November was “Re-Imagining Toilets: Adventures into the Design of the Public Loo”, the closing event for the fabulous “Around the Toilet” project masterminded by the possibly even more fabulous Jenny Slater, one of my favourite people in Disability Studies. I will say a bit less about this one than I did about the others, because there are some excellent reports from the event on the “Around the Toilet” blog and on the independent local news website Mancunian Matters, as well as a collection of tweets from the event on Storify.

“Around the Toilet”* was a project using arts and workshops to research “the toilet as a place of exclusion and belonging”, bringing together people from disabled, queer and trans communities to talk about both material and symbolic dimensions of toilets and the barriers to public participation created by lack of or inequality in access to them. One of the great things about this project was its engagement with social media, in particular Twitter (using the hashtag #cctoilettalk) – this made it very easy for anyone to link in any toilet-related stories, photos or humour to the project (I don’t use my Twitter account as much as I could or perhaps should, but in the last few months, apart from a bit of live-tweeting from events when I had enough phone battery, I think posting things to #cctoilettalk has been the main thing I’ve used it for!).

*I can’t help thinking they missed a trick by not calling it “On the Toilet”… 😉

One of my main reasons for going to this event was that an amazing concentration of my friends and comrades are involved in it – Jenny, Morag Rose of the Loiterers Resistance Movement, Jess Bradley and Loz Webb of Action for Trans Health, Gemma Nash and Kirsty Liddiard to name a few (apologies to anyone I have left out!). Greater Manchester Coalition of Disabled People, which I am an executive board member of, was also a partner organisation in the earlier stages of the project. I think this event probably featured more of my friends in one place at one time than anything else I went to in 2015! While this event wasn’t really directly relevant to my PhD, I did also get to meet a couple of people who had interesting perspectives on the topic that I hadn’t encountered before, and hopefully I will have further conversations with them.

There were several things going on at the same time in different rooms, so I didn’t see or take part in everything at the event, but I did see great presentations from Gemma about disabled parents and toilet access, from Morag about the cultural geography of toilets in Manchester, from Jess about why toilets are a trans health issue, and from a group of architecture students at Sheffield Hallam University about the installation – usable as a public information exhibit, a performance space or even a game – that they were commissioned to create as part of the project. There was also a screen printing and T-shirt making project, some toilet-themed films (which I didn’t see), a very tasty buffet and, at the end, a fantastic performance by Loz and Jess (wearing another of their many hats as the Queer of the Unknown performance collective), which involved powerful poetry, visual puns, people being wrapped in toilet paper, and at the end an amazing piece of audience participation in which people were called up to “play the parts” of the various things needed to make a toilet accessible, from the toilet bowl itself to walls, sanitary bins, grab bars and the probably most challenging part to play of “gender neutrality”!

I’ll close this with some photos (my first attempt to embed photos into a WordPress post, so I hope this works):

Gemma Nash presenting

Gemma Nash presenting

Gemma and Morag with some artwork made by young disabled people from <a href=Venture Arts in one of the project workshops” width=”1536″ height=”2048″ />

Gemma and Morag with some artwork made by young disabled people from Venture Arts in one of the project workshops

Part of the installation made by the architecture students

Part of the installation made by the architecture students

Live Twitter feed projected on the wall!

Live Twitter feed projected on the wall!

The T-shirt I made in the screen printing workshop

The T-shirt I made in the screen printing workshop

Queer of the Unknown performance

Queer of the Unknown performance

Queer of the Unknown performance

The finale of the performance, with everyone “A Midsummer Night’s Dream”…)” width=”2048″ height=”1536″ />

The finale of the performance, with everyone “playing the part” of parts of the ideal accessible toilet (I couldn’t help thinking of the “rude mechanicals” in “A Midsummer Night’s Dream”…)

(apologies for photos not having “proper” image descriptions, I’m hopefully going to add these later, but am posting this now because I have to rush out…)

Events I went to in November #2: The Principle of Uselessness

The second “academic-ish” discussion event that I went to in November was also in Sheffield, but in a very different setting… “The Principle of Uselessness: An Assembly”, organised by a collective of staff & students from the University of Sheffield, was part of the “Antiuniversity Now!” festival, inspired by the original Antiuniversity of East London in 1968 (which I hadn’t previously heard of, but which apparently involved many leading lights of radical theory and activism at the time, including RD Laing and other anti-psychiatrists, postcolonial pioneers like CLR James and Stuart Hall, and according to other sources I saw then but can’t find again now, Franz Fanon and Stokely Carmichael). The “Antiuniversity Now!” festival included events in London, Cambridge, Cornwall and other places over the weekend of 20-22 November, but the Sheffield event (on Sunday 22nd) was the only one in the North of England.

I came across the event on Facebook, where its event page called for “contributions of various forms, including poetry, critical reflections, music, performance, and so forth” for “an engagement with the ‘useless’ in an event in which we invite citizens / non-citizens / unspeakable ‘subjects’ to respond to, present on and perform the principle of uselessness: what stands against the notions of utility, what is, tragically, recuperated as ‘useful’, the logic and possibilities of failure, of refuse, refusing participation.” While there was no explicit reference to disability in the event description either on Facebook or on the Antiuniversity website, of course this immediately made me think of how disabled people have been oppressed and marginalised by ideologies of “utility” and “productiveness”, ranging from the abandonment of disabled children to die in ancient Sparta to the famous characterisation of disabled people as “useless eaters” in Nazi Germany, leading to the first of the Nazi mass extermination programmes (for more on this see this blog post and Liz Crow’s art/film project “Resistance”) and on to present-day demonisations of disabled people (as well as unemployed people and anyone else receiving state benefits) as “scroungers” and similar terms in the UK tabloid press – and thus, without really knowing who was involved in organising it, I invited many Disability Studies people from Sheffield, Leeds and Manchester to the event, although in the end only me and my friend and fellow Leeds PhD student Inga were able to go.

As it turned out, “The Principle of Uselessness” was a very cool and eclectic event that touched more parts of my life than it expected me to (there were readings of poetry (“The Lotus-Eaters” by Tennyson) and prose (one of the “Texts for Nothing” by Samuel Beckett) followed by discussions, more-or-less “properly academic style” papers, a short film shown on 2 laptops, more open-ended discussion, and topics including anti-psychiatry, refusal of work, space exploration, post-industrial cities and probably other things I don’t remember right now… different bits of it made me think of friends and comrades from several times in my life and areas of my interests), but it also left me with very mixed and conflicting feelings about (in)accessibility and “DIY” spaces. The space used for the event was a small and semi-derelict former electroplating workshop, used with the permission of the building’s owner, but strongly reminiscent of several squatted or otherwise temporarily occupied social centres or other similar spaces that I have been involved in to various extents and at various times (for example, the OK Cafés in Manchester).

I do think the use of such a space enabled an indefinable feeling to the event that wouldn’t have been possible in a brightly-lit university room, and one that on a personal/subcultural level made me feel much more “at home” than I often feel in academic spaces (not that I find “DIY” spaces completely unproblematic, but I definitely have a strong sense of positive identification with them). There was also a definite symbolic resonance between the space and the subject matter – as the event page said, “we meet in a collapsed, negative space, a space of ruin, to draw attention to what is neglected, made useless, temporarily occupy it, not to reclaim it, but in order to remain with what itself remains, without use or function, and in so doing to think through exhaustion, withdrawal, nullity”. There wasn’t a set order of presentations, which could have been stressful but made the event feel like much more of a spontaneous gathering and a fluid, unconstrained exchange of concepts and interests than most academic events do (and it enabled me and Inga to talk about disability, work and the welfare state without a prepared “presentation” but still as a significant and appreciated part of the event, which sparked a wide-ranging and worthwhile discussion and seemed to get a lot of interest from people who hadn’t been exposed to disability studies or Disabled People’s Movement perspectives before).

However, the space was really not very accessible for a huge range of different access needs (although in physical terms it could have been worse, and was better than a lot of squatted/”DIY” spaces I have been in – it was at least all on the ground floor and possible to get a manual wheelchair in with pusher assistance) – as well as physical access not being ideal (narrow entrance corridor, unramped steps between slightly-different levels of floor, and no accessible toilet – in fact, not really even a working “standard” toilet, as it leaked water onto the floor!), it was half-dark, and seriously cold (barely warmer than outside – and being late November in England, that meant cold enough for me to need to keep my big outdoor coat, and at times hat, on inside – admittedly this was partly because the electricity stopped working about 5 minutes into the event, and they didn’t get it working again until near the end, but I’m pretty sure it would have been cold and dark even with the strung-up lights and small electric heaters working). This definitely affected my ability to concentrate and remember/keep up with what was going on, and probably would have made it completely impossible for a lot of disabled people I know to have stayed in the space for the 3-4 hours of the event. (Also about halfway through there was someone playing an instrument that I think, but am not certain, was an oboe, which made a really horrible (at least to my ears) loud, discordant squeaky sound, which (when combined with the cold) did make it literally impossible for me to be in the space while it was happening, so I wandered around the area and came back when that had finished (I probably wasn’t colder walking around than I would have been sitting inside). This followed a long break during which I really wasn’t sure what was going to happen next, so I think, but am not completely sure, that it was an intentional part of the event, and the person was probably deliberately playing the instrument discordantly to convey or symbolise something to do with “uselessness”, but it was very inaccessible for people who, like me, have a sensory intolerance to high-pitched noises…)

I therefore had really ambiguous feelings about the whole event – I enjoyed it a lot, but couldn’t help thinking of my friends and comrades who wouldn’t have had the opportunity to enjoy it because they simply wouldn’t have been able to access the space, and I was left much more physically and mentally exhausted by the event than I would have been if it had been held in a space with a reasonable room temperature. (I have noticed several times in the past – notably at a Radical Routes gathering that was held at a larger but otherwise quite similar space in Birmingham – that indoor temperature really doesn’t seem to be considered as a valid accessibility issue by a lot of people in “radical scenes”, even those that tend to be reasonably aware of other aspects of accessibility. Speculatively, I wonder if this might have some connection to environmentalist moralising about energy usage?) There were aspects of the space and experience – for example, the half-darkness that made sitting in a loose circle listening to people talk/present feel kind of like gathering around a campfire – that really felt like they were in direct conflict with accessibility, which causes me troubled and unresolved thoughts about what I/we perceive as a “radical aesthetic” and what potentially-ableist principles might be embedded in that (this feels possibly relevant here) – although I still hold out hope that it is possible to create radical spaces that are built on non-hierarchical and “DIY” (or perhaps better expressed as “do-it-ourselves“) principles, and retain at least some of the aesthetic markers of that, but don’t compromise on accessibility…

One important theme that came up in conversation at the event (particularly from the discussion following the reading of the Tennyson poem) was the tension between regarding activism as necessary “work” (which often brings with it its own, often highly moralistic, “work ethic”) and refusing/resisting the very concept of a “work ethic” as part of the work-glorifying ideological culture of capitalism. This is also a tension that has a huge amount of personal resonance for me, and that seems to be ever-present in my life. “Work” as capitalism defines it is a monster that eats the lives of a huge sector of the population, and also degrades and even sometimes outright destroys the lives of those who it refuses as indigestible; yet, even in a utopian society with complete liberty, equality and no money economy, it’s undeniable that “work” (in its wider definition of “altering the position of matter at or near the earth’s surface relatively to other such matter” (Bertrand Russell)) would need to be done for humanity to survive – growing crops, raising children, building and repairing houses, making the physical and social environment accessible for all those who live in it… and if we have any hope of getting to such a society, whatever your opinion on strategy and tactics, effort and struggle is going to be needed. However, it is all to easy to exalt “activism” and self-sacrifice in such a way as to recreate the judgemental moralism of the capitalist work ethic within “radical left” communities – which inevitably excludes and denigrates disabled people (which is not to deny that disabled people can be and often are among the “hardest-working” of activists). I don’t really have any “solutions” to this tension, although many people have written important things that touch on it it (one example that comes to mind being Sunaura Taylor’s essay “The Right Not to Work: Power and Disability”).

(I remember wondering whether the tension between DIY/”alternative” spaces and accessibility was (at least partially) a subset of that tension – I’m now not sure if that quite “fits”, but this great speech on inclusivity or the lack thereof in radical movements by AJ Withers makes me think that they are at least related…)

The group who put on this event are apparently intending to use the same space for future events, and to improve its accessibility – I hope (especially given that they are located on the same street!) that there can be some engagement between them and the Disability Studies people at Sheffield Hallam. I also think that the concepts explored by this event (in particular the refusal and problematisation of work, as I have written about in this paper, and the paradox of how to make (anti-)productive use of “uselessness” and people/things/communities/spaces rejected by mainstream society as “useless” – which vaguely reminds me of the concept of “queer negativity” and work by people like Lauren Berlant and Jasbir Puar – although I haven’t fully read or understood any of those things) definitely deserve greater exploration and engagement by the Disability Studies community.

Events I went to in November #1: Considering Intimate Lives

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.