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?

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One thought on “Personal assistance on the BBC

  1. Hi Steve,

    Russ from CarePair here, also participant in the documentary that you have so methodically and definitively dissected.

    Firstly, and from reading your about me, I realise you were diagnosed with Aspergers in 2005, but do you really think that in a field such as this, where you are dealing with people, that it is appropriate or even acceptable to call real people, with real feelings “grotesque caricatures”?

    I would urge you to think long and hard about how you address people, if you are considering a career within this industry, you would be well advised to brush up on you social skills, and at risk of falling into the same generalising and offensive language camp as you, not something that is usually in the forte of people that are highly academic and on the Autistic Spectrum.

    Going back to your article now though, I’m going to take it point by point, and raise issues that I have with your thinking and subsequent writing. Forgive me for the no-doubt large amounts of quotes, but I want to make sure that I cover everything you’ve raised, and provide my feedback.

    Initially you first comment, “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.”

    I agree, the general public, and by that I am defining the general public as anyone not involved in the care industry, do not tend to associate the role of PA with the role of providing care, hence the term carer often gets used. In your statement above, you admit that people “often have no idea what a PA (in the sense of the word used by disabled people) is or does.”, so why do you then get annoyed by it later on when you say “and the PAs were frequently referred to as “carers”, with the terms “carer” and “PA” seemingly being used interchangeably”.

    I can understand the arguments about the terminology, and understand the implications of using carer or PA, but I think it needs to be remembered that this was a programme for BBC 3, aimed at the 16-34 age range, who in the whole would have absolutely no idea what a PA was, in terms of the disability market. People are much more comfortable with the label of carer, and when you are trying to engage with audiences quickly and efficiently, using terminology they understand is key.

    You then go on to say that you were uncomfortable with the initial format of the program. This is a fair point, as your opinions are just as valid as the next person’s. However, again, as this was a TV show, which was aiming to show that the job of PA/Carer could be open to anyone willing to give it a go and learn new skills, it was decided that going into the process blind would probably be best. If it was advertised as a carer giving role, then the people applying would definitely have been more comfortable with the roles. However the aim of the show was to introduce this role as a new and potentially rewarding job for people that had not considered it before, hence the format at the beginning. As you quite correctly state, it was then dropped and the focus shifted onto the relationships and developing story between the PAs and the Employers.

    Again with your comments around disability and impairment, there are two camps, in my opinion. As you are probably aware, from seeing me in the show, I am disabled, and I see no real need to differentiate between a disability and an impairment. I know that more politically minded disabled people feel that the terms should be separate and independent of each other, but in general day to day life, where you are trying to engage with people unfamiliar with the nuances of disability, it is again easier to stick to easy to access, and understandable terminology. There are enough barriers for people to overcome when they are interacting with disabled people, if they are not used to it, why make complicated, political and unnecessarily complicated language another one. People generally already worry about saying the wrong thing, without us disabled folk adding to the minefield!

    You then go on to say that the stories focused on the story behind the employer’s impairment. Again you are correct that the program did this, but I think you are unjustified in thinking that this is a negative point. Part of the point of these introductions and descriptions of disability, was to introduce an audience, who most likely had little or no experience of disability and impairment, to why these employers needed the help that they did.

    I was there during the entire production of those sections, I was the guy behind the camera asking the questions, and each employer was given totally free reign to describe themselves and their needs. The question posed was simple, “Who are you, and can you tell us a bit about why you are looking for a carer/PA?”. Each employer chose to tell their story, and to talk about their disability. Rupy chose to introduce herself the way that she did, because she is more involved with the political fields that use different terminology and see the situation differently, Jasmine, Michael and Josh aren’t involved, so look at it from a very different viewpoint. Each employer worked against their own frame of reference, and said what they said freely. Not all disabled people, much like myself, choose to use complicated language. If someone asks me what is my problem, I say I have a disability called Muscular Dystrophy, and it stops me doing certain things. No need to overcomplicate the situation!

    You then go on to talk about the pairings, focusing particularly on Francesca and Josh’s story. You initially call them both “quite unlikable”, but surely this is subjective? Have you seen the strong twitter support for them, Josh now has quite a following. You said that most of their story had no narration, but this is part of the point. It isn’t for the scripted narration to tell the audience what to think, they relationship that builds between Francesca and Josh is an organic and fluid thing. The audience is there to spectate and draw their own conclusions about the relationship and how it is developing, hopefully seeing that not all matches are perfect.

    After your initial attack on them both, you then say “Francesca repeatedly imposed her own views and preferences over Josh’s, in general came across as treating him patronisingly…”, however could it be looked at another way? I agree that sometimes Francesca appeared to overstep the mark, her comment about should disabled people be drinking comes to mind, but her role to support Josh could well be considered to be to guide him into social norms too? Perhaps due to his acquired brain injury, Josh’s support needs are behavioural as well as physical.

    As it said in the program, Josh had been cared for by his parents, and had mostly spent his social time in comedy clubs and with a very male orientated group in terms of social values. Part of what he wanted to achieve was to be introduced into wider social circles. Whilst this isn’t generally considered to be part of the PA role, introducing them to their own friends, if the PA is happy to do so, why would it be an issue. Francesca supported Josh to meet new people and to integrate more widely. What a lot of people don’t realise is that if you spend a lot of time with your PA, as I have with Ian over the years, you do become friends. That means that if they are going out on a Saturday night, and you are friends, you may well get invited. By proxy that means you may well meet your PAs friends, it is quite natural, and most people do not have a problem with it. If there is a problem that distinction can be made at the beginning, it is a personalised experience and can be played out as such.

    You then go on to criticise Francesca’s portrayal of feminism. At this point, I cannot comment one way or another, as I am not particularly knowledgeable. However I do think that your choice of language and personal attacks on a person who came into the show willing to see what happened, was particularly uncalled for. As an academic speaking to an academic, I’d strongly urge you to think about how you describe people when you do not agree with their actions and opinions. If you start throwing insults around, it is hard to be taken seriously and your opinions given time.

    With regard to Francesca and Josh’s story, I’d urge you to consider it as a whole. It is a good example of how two people that are polar opposites in terms of personality may not work. By the end of their story though they had both grown, and actually became good friends. Josh had developed significantly in his social skills, had started using dating sites, and socialising more effectively, I don’t see that as a failure for Francesca. I agree that she didn’t take to the personal care as well as Emily, but she did develop the emotional and behavioural aspects of Josh’s personality. That is the point of the program too, that it might not necessarily work, and that personality is as important as skills.

    Your argument continues with the undertones that the employer and the PA shouldn’t cross the friendship boundary. However you then contradict that with the statement where you quote, “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…”.

    In the real life situation where you are working closely with your PA, it is very important to have that open dialogue and honesty that usually comes with friendship. As you will have seen from the Jasmine and Emily shower scene, their open ‘friend-like’ approach, diffused any awkwardness and led to a successful task completion. Again I can’t see this friendship approach as a bad thing?

    Then, moving on to your paragraph about the toilet issues, this is a major thing for a lot of disabled people and their PAs. For me, I know the first time someone helps me in the toilet is the most awkward of the situations that will arise, and for a lot of PAs this is one of the issues that they build up to be an issue when they are imagining the tasks they may have to complete. As you saw in the program, Denny had issues, Emily did not, and I think this show the balance of how it is out there in reality. Some people are quite capable of doing the job, and some people struggle.

    You finish up by commenting on the lack of context, and whilst I agree that the program doesn’t talk about the closing of the Independent Living Fund, the process of assessment and acquiring hours which are turned into direct payments, I’d argue that it doesn’t need to. It was never billed as a BBC 4 style documentary, looking at all aspects of the care scenario. It didn’t promise to take views from the start of the process to the end. It said it would show how four young disabled people and four unemployed people found working together as employer and PA, and in my opinion it did exactly that. I agree that some aspects were made more TV friendly and some situations may have been amplified for dramatic and narrative purposes, but on the whole I feel it was a fairly accurate portrayal of how the situation is in reality, and so does a lot of the feedback from disabled and PA viewers.

    Whilst I appreciate your comments and criticisms, I do not agree with them all. I am concerned that since the program, there has been a swathe of blogs and articles such as yours, written by academics, social workers and audiences to the relationship between an employer and PA. It is very well to say what should happen theoretically and as best practice, but in reality, disabled people are in control of their own care, they can chose the relationship, whether it be friendship oriented or more on an employer and employee basis. I think it is dangerous and actual counter productive to criticise the process and pick holes in what is a TV show, potentially scaring off new employees to the industry.

    It takes a lot of effort to encourage people into this industry, and with the looming care crisis, as the population gets older, this effort needs to be sustained, not hampered by theoretical critics.

    Please consider your actions in the wider context, the industry needs as much help as it can get to recruit and retain carers, and such negativity isn’t necessarily productive.

    All the best
    Russ

    *Comments made are my own opinions and not those of the BBC or Ricochet.

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