National Disabled People’s Summit: my report

On Saturday (4th November 2017) I attended the National Disabled People’s Summit in London, organised by the National Education Union, Reclaiming our Futures Alliance (ROFA) and Disabled People Against Cuts (DPAC).

Bob Williams-Findlay introduced the summit with a great speech putting the present conditions faced by disabled people in historical context, warning against “reinventing the wheel” caused by a lack of knowledge of our movement’s history. Bob also spoke about the tension between reformist and revolutionary approaches to capitalist society in the Disabled People’s Movement, pointing out the contradictions inherent in the idea of ‘inclusion’, i.e. that it is possible to end oppression by entering into a society that rejects us at every turn. While Disabled People’s Organisations in the past took different positions on whether benefits or inclusion in paid work are the best solution to disabled people’s poverty and social exclusion, both are problematic in different ways and neither is a perfect solution. Previous DPOs, such as the British Council of Disabled People’s Organisations (BCODP), chose to focus on barriers and anti-discrimination laws, which Bob described as “politically naive”; a “rights” approach to disability activism identifies individual characteristics and demands concessions from capitalist society rather than seeking to change its fundamental basis. While many DPOs got sucked into service delivery rather than activism, DPAC builds on the tradition of earlier direct action groups including the Campaign for Accessible Transport (CAT) and the Disabled People’s Direct Action Network (DAN), but there is still not necessarily enough continuity of struggle.

Ellen Clifford followed this by saying that we need spaces for debate, but also to support one another, and acknowledging the fact that many DPOs are currently overwhelmed by demands for support from disabled people in crisis that they have nowhere near the funding or resources available to meet, and the sad loss of many prominent disabled activists in the last year, including Debbie Jolly, Sophie Partridge, Robert Dellar and Eleanor Firman (a list to which I would add Lorraine Gradwell and Keith Armstrong). She pointed out that “getting Corbyn in” is not enough to reverse the damage done by the years of Tory austerity, as even the Labour leadership that many disabled people have pinned all their hopes on do not necessarily fully “get it” on disability issues.

There were then one round of workshops, followed by lunch, a second round of workshops, and feedback from all the workshops at the end. Both of the workshops I went to – Independent Living in the morning and Direct Action in the afternoon – were attended by large numbers of enthusiastic people with a lot to say, but didn’t necessarily come to solid conclusions and were really more about noting down the most important issues identified by the the participants and their ideas for how to deal with them (from what I heard of the feedback at the end, most of the other workshops were probably similar).

In the workshop on Independent Living, the issues raised included:

– cuts to ‘social care’ (including that provided by LAs and by the NHS) everywhere in the UK

– people being evicted from care homes (with no other accessible accommodation to go to)

– people being forced to break the law by paying PAs below minimum wage

– ongoing court cases to try to get councils to keep giving people the funding they had promised to ‘ring-fence’ after the closure of the Independent Living Fund (ILF)

– people who get health funding for personal assistance having that stopped when they go into hospital

– postcode lotteries regarding care charges

– tightening of eligibility criteria for direct payments by LAs

– difficulty recruiting and retaining good PAs

– CILs and other ULOs in crisis because of lack of funding (and councils “taking back in-house” services that CILs/DPOs had been contracted to deliver, such as payroll support)

– imposition of ‘pre-payment cards’ by LAs instead of Direct Payment bank accounts

It was recognised that Independent Living is not just about personal assistance, but on the other hand personal assistance is crucial to IL – as one participant said “access to things like workplaces and public transport doesn’t matter if you don’t have the assistance to get out of bed”.

While most people present had physical impairments (and most of those were themselves personal assistance users), a notable exception was Simone Aspis from ALLFIE, who spoke passionately about people with learning difficulties, autism and/or mental health diagnoses being increasingly institutionalised in privately-run facilities such as Assessment and Treatment Units (ATUs), making the important point that “opposing all cuts” is not good enough for the DPM when there are some ‘services’ that actually oppress disabled people and deserve to be cut. Similarly, Claire Glasman from WinVisible raised the issue that councils “always have money to take children away from disabled mothers, but not to support disabled mothers to raise their children”.

The closure of day centres was also controversial, with some people reporting disabled people in their areas campaigning to keep day centres open because the alternative was social isolation in an inaccessible society. The divide between those who are fighting to defend the formal support they are getting and those who are not getting any was also brought up as something we need to be careful is not exploited for “divide and rule” politics.

Several things that we need to keep on the agenda of campaigns for independent living were agreed on, including:

– the need for advocacy for individuals struggling against bureaucratic systems to get what they need

– the need for ‘propaganda’ to get the word out to wider society about what it means to live disabled and unfairly restrictive lives

– the need to get back to the ‘core concepts’ of IL, such as the right to choice and control and the “Seven Needs” established by Derbyshire CIL in the 1990s

– the need for a strong law to give disabled people a right to IL (as opposed to the insufficient existing laws such as the Care Act 2014)

– the need to focus our campaigns on what we are for, rather than merely what we are opposing (e.g. “cuts”)

Many activists present argued forcefully that the system of payments for personal assistance needs to be national rather than local in scale, for fairness and to allow disabled people the freedom to move between different LA areas without risk of losing their support packages – a “national PA service” as one person suggested calling it. One PA spoke saying that PAs need secure jobs and thus have common interests with disabled people who need secure support, raising the question (unanswered in this workshop) of whether PAs should also be involved in working groups on Independent Living.

Mark Harrison from Equal Lives in Norfolk argued that personal assistance needs to be resourced nationally but delivered locally, through DPOs, co-operatives and social enterprises run and controlled by disabled people, under the principle of “nothing about us without us”, and that we need to have “professionals on tap, not on top” (a phrase that reminded me of Vic Finkelstein’s concept of “professionals allied to the community”). He also advertised the forthcoming Independent Living Campaigns Conference in London on Saturday 25th November, which I am also hoping to attend.

I wasn’t making such comprehensive notes in the Direct Action workshop, but it was attended by a wide range of veterans of direct actions old and new, including DAN and more recently DPAC, and a few people who were new to direct action but eager to get involved. There was discussion of differences between past and present conditions, including the fact that the disabled community arguably no longer has the resources that it once had to enable sustained direct action campaigns to happen, and of the tensions (not necessarily either/or) between locally and nationally focused action (I argued that, while national actions are important, local action is going to become increasingly necessary as LA-provided services are likely to be the ‘next frontier’ of cuts affecting disabled people’s daily lives). The role of unions was also discussed, in particular the question of what kind of relationship the DPM should have with unions representing workers in the ‘care’ industry, the DWP, the NHS, etc. I was pleased to see that most of those present accepted a wider definition of “direct action” and did not reduce it to a narrow range of tactics, and that it was recognised that direct action needs to be part of a wider strategy and can be complemented by other forms of activism. One thing that emerged from the workshop was a plan to produce an up-to-date disabled people’s direct action toolkit, potentially based on that used by ADAPT in the US as well as the old DAN handbook.

I must admit that I was pretty overloaded and losing the ability to concentrate when the feedback from the other workshops was given at the end, so I don’t remember much of it, but I do remember (presumably coming from the “social security” workshop) talk about the need to oppose the rollout of Universal Credit, with someone (possibly Paula Peters of DPAC?) saying that the Labour Party’s promise to “pause and fix” UC was not enough, and that instead we need an uncompromising demand to “stop and scrap” it; there was a mention of a planned national day of action on this, but I’m not sure if a date had been set for it.

Overall, I felt like there was a positive atmosphere and good and important discussions happening at the Summit, with some disagreements (inevitable in such a diverse movement) but a general feeling that, despite many barriers, there is hope for the DPM to be revitalised. However, I was left feeling like it wasn’t at all clear what was going to come out of this summit beyond the day itself. I have since heard that a report from the Summit is going to be released, which hopefully will have some pointers for co-ordinated future action…

There is commentary from the National Disabled People’s Summit on Twitter at the hashtag #DisPplSummit and video footage here on Occupy London’s website.


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.

Personal assistance on the BBC

As part of a season of disability-themed programmes called “Defying the Label”, the BBC has just shown a two-part documentary about personal assistance called “Wanted: A Very Personal Assistant” (available for another few weeks on BBC iPlayer). I felt like I pretty much had to watch this as its theme is so closely related to my PhD – and, interestingly, several of the people I have interviewed talked about the lack of awareness in the general public about the job/role of PA, and suggested that a good way to raise awareness could be to have PAs appear on TV, one mentioning a previous documentary about disabled parents that failed to even mention PAs, and another saying that when disabled people – who in the real world would have PAs – appear as characters in soaps, crime dramas, etc, there is never a PA to be seen (something that could be linked to the tendency for “positive” portrayals of disabled people in the media to show them as “just like everyone else” and capable of doing everything “independently”, with assistance needs thus being erased or ignored as too inconvenient to think about…) – so I watched this with interest to see if it would actually be effective in raising the profile of personal assistance…

It is perhaps ironic that “Wanted: A Very Personal Assistant” was in some ways premised on precisely the fact that people (including people applying for jobs as PAs, as several of my interviewees testified) often have no idea what a PA (in the sense of the word used by disabled people) is or does. The format was influenced by the ‘reality show’ genre, attempting to ‘matchmake’ 4 disabled people in their 20s with similarly-aged unemployed people as prospective PAs – the gimmick being that the job adverts did not mention anything about the employers being disabled people, simply saying “personal assistant needed to work for young, easy-going boss”. The applicant chosen by each disabled person would then get a job trial with the possibility of a permanent job as a ‘prize’ at the end. I felt somewhat uneasy about the element of deception in this, as well as the general competitive and arguably exploitative ‘reality show’ format (why is the ‘reality’ in ‘reality shows’ so often an artificially constructed and hyper-exaggerated version of the all-against-all competition assumed without evidence by ‘there is no alternative’ ideologues of capitalism to be fundamental to all human life?), but the structure of the programme was not as much of a game-show competition as I feared it might be, choosing to drop the gimmick fairly early on and concentrate primarily on the success or failure in each case of the developing relationship between PA and employer.

All but one of the disabled people featured got very individual-model ‘impairment stories’ (with elements of both medical and personal tragedy sub-models) – the one who didn’t, Rupy Kaur, is notably the one who is somewhat older and probably more politicised/connected to the Disabled People’s Movement (she has written about personal assistance before on the BBC Ouch! site and on her own blog), making me wonder if they got some degree of veto over what the narrator said about them. (It’s also interesting that the prospective PAs didn’t really get parallel ‘unemployment stories…) The terminology used was also sometimes frustrating – no distinction was made between disability and impairment, and the PAs were frequently referred to as “carers”, with the terms “carer” and “PA” seemingly being used interchangeably, another terminological distinction that is important to many (although not all) disabled people due to the very different implications of the two terms about who is the person ‘in charge’ in the relationship (see, for example, Rupy Kaur talking about these distinctions here – did the programme makers not know about her position, or was the decision made to use “carer” regardless? and if so why?).

Of the individual relationships portrayed, that between Josh (the stand-up comedian) and his PA Francesca was definitely the worst/most problematic – not only did both of them come across as quite unlikeable people (I’m not sure which (if either) of them the viewer is intended to sympathise with), but the relationship between them – which was presented for the most part without commentary – was a long way from what most of my interviewees, including both disabled employers and PAs, would see as ethical or acceptable. Francesca repeatedly imposed her own views and preferences over Josh’s, in general came across as treating him patronisingly (it was particularly uncomfortable to watch when she and Josh’s father talked about Josh in the third person as if he wasn’t there, despite him standing right next to them) – although Josh also certainly didn’t come across as a good employer, or as understanding what most disabled people regard the role of a PA as supposed to be (for example, no one I interviewed would have wanted their PA to introduce them to the PA’s friends, and most would probably have seen that as very much counter to the norms of personal assistance).

I also felt a bit like Francesca was portraying feminism badly, by being the programme’s only representative of feminism, but holding very nasty and unjustified views about sex work (which are not shared by anywhere near all feminists), coming across as snobbish and classist, and generally seeming like something of a grotesque, sitcom-style caricature of a pretentious middle-class student (although Josh himself and Denny Lee, the would-be PA who couldn’t cope with quadriplegic Michael’s toileting needs, both also seemed like comedy grotesques to me, which made me think that perhaps the documentary wasn’t portraying them fairly – were editing choices made that emphasised the most ‘extreme’ and mockable aspects of their personalities and behaviour?)

All of the employer/PA pairs profiled in the programme – although each in different ways – brought up issues around negotiating the boundaries between friendship and professional working relationships, and the possibility of both coexisting in the PA/employer relationships. This was also a theme that has repeatedly come up in my interviews – to the extent that, although it wasn’t central to my initial research questions, over the course of my interviews it became prominent enough for me to start actively asking about it in later ones. In both my interviews and this documentary, it strongly reminded me of Sarah Woodin‘s analysis of personal assistance as “paid friendship” in her PhD thesis (available here on the Centre for Disability Studies archive). There was an interesting contrast between Rupy, for whom the boundary between personal assistance and friendship was very clear (and whose description of the role of PAs as “arms and legs” to her “head” echoed descriptions in early DPM writings about personal assistance – for example the “Rough Guide to Managing Personal Assistants” by Sian Vasey – interestingly, many of my interviewees described this very strictly defined and impersonal relationship as one that they either knew other disabled people who preferred, or felt like they ‘ought’ to have according to norms of the DPM, but that they themselves found unworkable or undesirable) and Jasmine – the only person who eventually did employ the jobseeker matched with her as a PA, Emily – for both of whom friendship and common ground in social interests seemed crucial to establishing a successful PA/employer relationship (see the interview with Jasmine and Emily on the BBC TV blog).

It was also interesting how much emphasis was put on toilets and assistance with excretory functions, both by the programme makers and by several of the participants themselves, with what felt (particularly in the case of Denny Lee and Michael) like an assumption that toilets and excretion are inherently disgusting, embarrassing or horrifying. This of course made me think of the “Around the Toilet” project (which several friends and comrades of mine are involved in – if you are on Twitter, check it out on the hashtag #cctoilettalk).

My biggest criticism of this programme is, however, its lack of context – in particular the complete lack of acknowledgement of the threat posed by the closure of the Independent Living Fund, and other benefit and social care cuts, to disabled people’s ability to employ PAs, but also and more broadly, there was nothing shown about the bureaucratic barriers that disabled people who employ PAs so often have to deal with – no discussion of people having to make hard decisions about what to do with their PAs within the limited hours that they have funding for, of being allowed to use PAs for certain things and not for others, of having to undergo repeated assessments by social services, etc… in fact, I don’t think the average person watching this documentary would have been left with any understanding at all of where the money that disabled people use to pay their PAs’ wages comes from (and they would certainly be left with the assumption that all disabled people who need PAs get sufficient funding to employ PAs for all the hours they want or need).

This is tied in with what seems to be a general lack of acknowledgement of the effects on disabled people of living in a disabling society (as demonstrated by the individualistic presentation of the disabled people’s ‘impairment stories’ and the failure to make any distinction between disability and impairment – the most we got was a bit of fairly incidental stuff about physical access to buildings with Rupy’s house viewing of a bungalow with an inexplicable step to the door (she presumably made the same assumption as I would have – that the only reason bungalows are built in this country was to accommodate people who can’t use stairs) and Jasmine’s need to improvise solutions for getting into the pub and using the toilet once inside, and even that felt to me like it was presented as something ‘natural’ that a resourceful disabled-person-and-PA team could/should simply find an improvised way round.

(however some reasonably good context is given on the Open University website that is linked to from the BBC’s programme page, and mentioned at the end of the programme, including a page about the social model)

The programme did make me think about some absences in my work – in particular that of gender. All the PAs in this documentary – like the majority of, although by no means all – PAs in real life – were women, and significant tensions around gender (and/or bodily sex) came up in both the relationships in which the disabled employers were men. Despite there being a range of gender combinations among my interviewees, and a lot of the literature I have been working with involving feminist theory (in various forms), the subject hasn’t seemed to really come up in my interviews (although I have thought about asking about it, but found it difficult to word or fit in a question about it).

Comments welcome – if you saw it, what did you think?

Second call for participants (May 2015)

I have now done 21 interviews, of which 13 have been with disabled employers of PAs, 6 have been with past or present PAs, and the remaining 2 have been with individuals who have had experience both of working as PAs (prior to acquiring an impairment) and of employing PAs (who were extremely interesting people and I feel like it was a very lucky find, especially to get 2 people with the same dual experience, giving me some very important and unique perspectives!) – thus, in total, I have now interviewed 14 employers and 7 PAs (counting the people who have been both twice).

Having twice as many employers as PAs is not actually that bad compared to what I was expecting – I expected to have some difficulty finding PAs to interview, as disabled people have many organisations and networks, whereas PAs don’t really have anything comparable. (In fact, some of the PAs I have interviewed are themselves disabled people – although with different kinds of impairments to the employers – and were also found through Disabled People’s Movement circles, which is another interesting perspective, and one which of course interests me personally, as a disabled person with a “non-physical” impairment who has worked as a PA.) However, I do want to get as close as possible to “balance” between my 2 main groups of interviewees – while recognising that it doesn’t need to be, and probably won’t be, perfect balance in numbers – so I want to call for participants again, this time specifically looking for people (whether disabled or not) who currently work, or have formerly worked, as PAs for disabled people.

This doesn’t mean that I am no longer at all interested in interviewing disabled employers, but I think that I will now probably be more selective with employers and (for example) concentrate on people whose experiences of employing PAs are substantially different from those who I have employed already – so, if you are a disabled person who employs PAs and you have already expressed an interest in this research but I haven’t yet interviewed you, I will still interview you if you really want me to. However, it would be fantastic if you could share this with any of your (current or ex) PAs or anyone else you know who has worked as a PA and might be interested in being interviewed!

If you are seeing this page first and don’t know anything else about my research, my original call for participants can be seen by clicking here, and the background to my research is here.

As always, you can contact me by email ( or by filling in my contact form on this site.