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?