Conversation with Steve Graby on Personal Assistance: The Challenge of Autonomy

knotted rope to illustrate tension and solidarityThis month Lani interviews Steve Graby, a Disability Studies researcher at the University of Leeds. They discuss the tensions inherent within the personal assistance employer-employee relationship, as well as the opportunities for solidarity.

Read more about Steve’s work: visit his website or follow him on Twitter.

Download as MP3

Read the transcript below.

Lani: Welcome to Sideways Times. This is a new UK-based podcast, in which we talk about the politics of disability and disability justice. Through this podcast, I hope to have many conversations, which broaden, deepen and challenge our understanding of how we work against ableism, and how this work connects to other struggles. My name’s Lani Parker and today I’m with Steve Graby. He’s doing a PhD in Disability Studies at Leeds and his PhD focuses on personal assistance. And so I wanted to talk to him today about the background to his research, what he’s finding out, and what it tells us about working against ableism and other struggles.

So do you want to talk a bit about your research to start with, Steve?

Steve: Yeah. I’m doing a PhD at the Centre for Disability Studies at the University of Leeds and my PhD thesis title is Personal Assistance: The Challenge of Autonomy. And it might have shifted a bit from its original roots in the process of me doing the research and interviewing people. But I guess where I started coming from was both my experiences of having worked as a personal assistant and experiences within, thoughts about movements I’ve been involved in: both the disabled people’s movement, and I suppose the wider kind of anti-capitalist movement, and critiques of wage work and labour that have come from both of those perspectives.

My original PhD proposal was about the question that had been bugging me for a long time, which was working as a personal assistant, being an employee of a disabled person who becomes the employer and that kind of power position of being the employer there, being able to hire and fire their own personal assistants. Which is supposed to kind of reverse the power relations that have traditionally existed where disabled people have been very much disempowered by traditions of care, where the people who were providing them with whatever assistance they need were the people with all the power in that relationship. But at the same time this is a paradigm of waged work and it’s an employer-employee relationship that’s supposed to be liberating disabled people.

But both the disabled people’s movement, and kind of wider anti-capitalist critiques that I would identify with, identify the wage labour relationship as being the root of both the exclusion of disabled people from society that makes them an oppressed group of people in the first place, and a lot of other things that are wrong with society. So I felt like that tension, that contradiction, how does wage labour both oppress disabled people and liberate them, was something I very much felt the need to try and resolve.

And I suppose in the process of doing my PhD, in some ways I’ve maybe shifted away from those big scale questions a bit and more into kind of micro-scale sort of power issues and solidarity issues that come up in the kind of on the ground does it work between individual PAs and their disabled employers. And also of course the context that we’re living in in the UK at the moment with austerity and cuts to funding that put both disabled people and their PAs in a very precarious position.

Lani: So that’s interesting. So there’s been a shift. So you were first talking about the big questions about what’s the contradictions between the waged labour kind of dynamic and what can we do about them? In terms of empowerment and autonomy. And now you’re talking more in the micro. So can you still make links between the two things and how we can kind of resolve any of those contradictions in terms of the politics behind the research?

Steve: Mm. I mean, I hope we can, and I’m still intending to try and make links around that. One thing that I’m kind of focusing on at the moment is the possibility of more cooperative and more collaborative ways of organising personal assistance, which is not necessarily challenging the fundamental wage labour paradigm at its sort of most basic level, but I think if you look at countries like Norway and Sweden and some other countries in Europe, they tend to have systems where it’s not so much the individual disabled person who employs the PAs as it is in the UK but there are disabled people’s organisations that are also kind of workers’ cooperatives, which are the employer. While in some ways I think that is kind of a cosmetic difference, in other ways I think it has implications that could lead towards kind of systems being developed where there is more possibility of solidarity between disabled employers and personal assistants. Because as things stand at the moment, when the individual is the employer, it creates this almost antagonistic relationship in some ways, as you would expect from an employer who wants to get as much work for as little money as possible out of their employees, and an employee who just wants enough money to survive. And that is quite interesting.

One thing that I found very interesting that came up in a lot of my interviews was there was this idea that a lot of employers had that there was a kind of relationship between the disabled person and the PA that was almost prescribed. And whether they got that idea from disabled people’s organisations who did training about the role of employer and PA, or whether that just kind of came from a sort of a general background of… A lot of people talked about how they thought other disabled employers were doing it but they themselves didn’t feel able to: of having this very much, like in some ways a very cold and mechanical employer-employee relationship. So there’s no personal relationship, it’s made extremely clear that you’re the boss, they’re your employee, they do what you tell them to do, you pay them, that’s it, you know. And kind of using phrases like “PAs should act as their employer’s arms and legs.” And that PAs should never, if you’re in any kind of social situation with a PA, the PA should know that they should never attempt to be an actual participant in that social situation, because they’re only there to enable you and not as themselves, if that makes sense.

Lani: So quite mechanistic, in a way. And sort of divorced from the relationship.

Steve: Yeah. And a lot, in fact I think almost all of the employers who I interviewed felt that that was how they thought they were supposed to do it, but that in their own relationships with their PAs, they didn’t feel able to do that. Because they did feel that their PA is also an individual, also a person that they feel a solidarity towards, and that it felt kind of unnatural to have a person being there in a social situation and not being able to be a part of that social situation. A lot of the time, people also felt that other people who they’re in social situations with didn’t understand what the role of a PA was, and things could get awkward when someone else who was there at the table would ask the PA their opinion on something and the PA wouldn’t know whether to speak or not.

But a lot of people, and I’m thinking of one person in particular, who said that she felt there was no way she could not try to be friends with her PAs, simply because they were together so much. She had quite extensive impairments and needed PAs to be around basically 24/7, and therefore felt that if people are around you all the time and doing quite physical intimate stuff for you some of the time, then it’s very hard not to try to kind of, if not treat them exactly the same as you would your actual friends or your family, but that the closeness had something that was like friends or family. It couldn’t just be treated as a kind of boss and employee relationship like you would find in a shop or a factory or something. And then people kind of felt weirdly guilty for doing it like that, because they felt that was not how they were supposed to be doing it, which was quite strange in some ways. I haven’t fully unpicked the implication of that so maybe that maybe that wasn’t actually the best thing to talk about, because I’m not sure I can draw a particular political point out of that, necessarily, but I think it was quite interesting.

Lani: It’s quite interesting about the idea of professionalism. What it makes me think about is the idea of professionalism and individualism, and maybe a protestant work ethic kind of thing has a hold on what we’re supposed to do, but in reality everyone knows people’s lives are more messy than that and you deal with it however, kind of thing. So it’s really interesting, actually.

Was there anything else that strikes you at this point about what’s come up that’s been useful or interesting so far from the interviews and/or the other kind of research?

Steve: Yeah. I think one thing that’s quite interesting is that I went into this very much feeling that I would be trying to ask people about their kind of utopias, their sort of ideal society and in your ideal world, how would disabled people who need assistance with daily living tasks get that? And I found those were very difficult questions to ask. I found that when I did ask them people often just found it very hard, a lot of people just didn’t have a concrete idea of what their ideal society would be like. And also it was quite hard for me to ask those questions because I felt asking them that this feels kind of silly, in a way, that it doesn’t necessarily relate to people’s immediate concrete concerns. And when I asked people what would they like to change about how personal assistance works, the thing that nearly everybody just went back to was the really basic level of funding and resources.

It felt like people couldn’t really imagine a different or better way that personal assistance could work, because the paradigm of how it was supposed to work that had come from the disabled people’s movement and the principles of independent living has never actually been fully implemented in the first place. That hasn’t ever been fully achieved, because people have never had secure enough funding to have their PAs really truly fill that role, without having to make hard decisions about well, “I’ve only got this many hours available that I can pay for so I’ve got to decide between, do they help me with this part of my life, do they help me with that part of my life?” In some ways, the really dominant thing, especially because at the time I was doing the interviews that was right at the time when the Independent Living Fund was being closed down, which had been a major source of funding of personal assistance for several of the people that I interviewed, people’s massive concern was that everything felt precarious, they couldn’t rely on funding. People were all struggling with bureaucracy, struggling to get enough hours to get what they needed, struggling often with things around payroll and sick pay and income tax and all these administrative aspects that a lot of local authorities just expect the individual disabled person to take on and deal with themselves, even though they’ve very likely got no experience of dealing with stuff like that in any other context, might not even have had a job themselves. And some people get some support from disabled people’s organisations or services within the council or whatever, but that was very patchy, it was kind of like a postcode lottery. Even if people did get support, it wasn’t always very good. This very sort of concrete level of struggling to actually realise the paradigm of personal assistance as it was supposed to be was preoccupying people to such an extent that it was often hard for people to imagine anything different or better.

Lani: What do you think is the effect of that in the sense of, is that the success of the dominance of that particular model? Because there are other models around. For example, care collectives and that kind of thing coming up that people are trying different things. A few things came to mind. One was around how workable do you think that dominant ideal is, given that it’s not worked? And the second thing I was coming up when you were talking was, what’s the place of collectivity in terms of what people have said so far, around collectivity, solidarity, terms like community, that sort of thing? When there is such a dominance on that sort of paid relationship.

Steve: Yeah, there’s some very, very interesting stuff there. I do think people put a very high value on this model of a paid employer-PA relationship, and I think people did see that there were sort of some tensions and contradictions potentially between that and other aspects of radical politics. I mean, not everyone I interviewed would identify themselves as having broader radical politics but quite a few did. And people did see that there are other ways that it could’ve been done. But I think there was a very strong feeling that the relationship of PA to disabled person, even if people in some ways wanted it to be kind of different from the very strict, narrow way that they felt like it was being prescribed to them and wanted say to have more elements of friendship and intimacy in that relationship, which was not everyone, but it was quite a few people, but I think people did very much feel that the difference between a PA and traditional models of carer was something that was very important to them, that they really wanted to defend and promote. They felt that that that distinction was not sufficiently recognised. And I do think that people were quite passionate about the huge difference that that made in their lives, that people wanted to achieve, a lot of people used the word independence, I would actually prefer to use the term autonomy because I think the term ‘independence’ is quite misleading, but maybe we can come back to that because you asked about the more collective aspects of it.

I mean, there are other potential models around, including things like care collectives. And most of the stuff I have encountered about care collectives comes from the US or Canada, which may be an artefact of the fact that in those countries there isn’t necessarily always such an established kind of system of payments from social services or whatever to people to employ PAs. There was only one person who I interviewed who was experimenting with care collectives but they hadn’t actually really properly started doing that at the time that I interviewed them. They were just beginning to explore those ideas as a potential alternative model.

I think most people felt quite strongly that there needed to be if not necessarily a payment relationship then a very clearly defined role that was there as what a PA is supposed to be, that’s distinct from just kind of friends and other people they’re in community with. But I think this whole thing about solidarity and the distinction from charity is a very interesting and problematic thing, especially in the context of the British disabled people’s movement. Perhaps that’s less so in other countries, I’m not quite sure, but the disabled people’s movement has long opposed charity and for quite good reasons. I think a lot of those reasons are actually quite closely parallel to critiques of charity that come from other, like say postcolonial movements. And this idea that charity is basically quite patronising, it’s essentially the goodwill of the rich and privileged and it disempowers and takes control away from the people who receive it. And particularly in the context of disabled people, it’s very much tied up with this perception of disability as an individual tragedy, as something you’re supposed to pity and feel sorry for, as basically an individual’s problem rather than society’s problem. And that, I think, means that a lot of disabled people, in Britain at least, are very suspicious of anything at all that looks like charity.

And while I’m not critiquing that – I’m suspicious of charity myself – I almost think sometimes the net gets cast a bit too wide. Because how things have tended to be in Britain with the disabled people’s movement has been that the alternative to charity is provision by the state. And I think the disabled people’s movement in Britain, with a few exceptions, has generally tended to take a fairly uncritical view of the state as provider. And that private charity is problematic but they see the state as the representative of the people that can provide impartially to all, and that therefore a state provision, a statutory right or entitlement, is far better than charity. And in some ways I think it is. In other ways I think it has led to something that I find a bit weird from my own perspective, in terms of a rejection of anything that isn’t statutorily provided, or anything that’s kind of voluntary rather than paid. And I think a lot of British disabled people would probably be quite suspicious of ideas like care collectives because of that.

I’m not sure if I’m articulating this terribly well, but I think maybe if I take what might look like a slight digression into kind of my background it might help. I was involved in broader anti-capitalist activism, I would’ve called myself an anarcho-communist, I was involved in stuff like anti-globalisation, stuff around the environment and climate change and particularly how that intersects with capitalism before I self-identified as a disabled person. And then I came to the realisation that a lot of the things that I had socially struggled with, which probably were in many ways the things that radicalised me, so I guess I was radicalised by an experience of disability, without necessarily knowing to call it disability when I was younger. And when I came to the realisation that some of these things, not necessarily all, but some of them could be explained by my being on the autistic spectrum and going into that psychiatric system to find the diagnosis. And then, I guess, in some ways, because of the experience I already have in activism, I was quite primed to try to find the disabled people’s movement.

It actually took me quite a while to find it, and when I did find it, it was very much dominated by people with physical impairments, which is another story. But I guess my experience of the disabled people’s movement was that a lot of the people involved in it had not really been connected to any kind of activism or any kind of radical critique about anything beyond disability. And I think that coming from where I was coming from, from a background of very much ‘do it yourself’, not assuming the state is gonna do something because the state is usually the problem, so we need to do stuff ourselves, in a very mutual aid kind of way, sometimes that felt like it rubbed up a bit weirdly against a lot of people in the disabled people’s movement. All their activism was very much about demanding that the state fund this or that the state provide that.

In some ways I found myself a bit reluctant to make some of these criticisms, because I know that I’m not a person who needs that kind of extensive daily assistance with basic tasks like getting out of bed and getting your clothes on and go to the toilet or whatever. And I can very much appreciate how people who do need that kind of assistance tend to have much more welfare statist politics than I do, because the welfare state is the system that they know that is a way to get those needs met. Or at least to get those needs met in a way that’s not totally disempowering and totally patronising.

Lani: For some people.

Steve: For some people. Not for everyone, of course. And of course these things are dependent on statuses like being a citizen and having certain legal definitions or whatever. And that’s another thing that the disabled people’s movement in this country has probably not really engaged with as it should’ve.

[Pause tape]

Lani: So we were talking about I suppose in a way dominant strands of the movement in the UK and how they’ve developed a fairly sort of, perhaps not as critical of the state as could be useful. And then obviously talking about access to the state being dependent on citizenship and ethnicity and all those sort of statuses. And perhaps the disability movement or the dominant movement hasn’t taken those forward enough, which I think are really interesting, valid criticisms.

Part of that politics was interesting to hear you talk about because that’s part of why you started doing the research, right?

Steve: Yeah.

Lani: Because you saw this sort of disconnect, a little bit of a disconnect between what you’d been involved with before and the disability movement as you came into it. And I guess for me, I’m interested in making those connections and broadening things out. So I’m interested now to talk about kind of what those concepts that you built on, so we’re talking about things like interdependence, autonomy, those kind of things that are very based in both sets of movements. Or all sets of movements have their concepts around that sort of autonomy, independence, what it means to be liberated, or what it means to be included. And I wondered if you wanted to say some stuff about how the research has changed those concepts or what you’ve learned about those concepts.

Steve: I think to sum up what I was trying to say before, I think to a lot of disabled people in this country, a politics of mutual aid looks suspiciously like a politics of charity. And I think that is not necessarily helped by non-disabled people in other radical movements often not having that great an understanding of disability, not grasping things like the social model, and sometimes having an attitude towards disabled people that can be quite a charity kind of attitude. I’ve known a lot of people who were led by their radical politics to work for some actually very problematic charitable organisations dealing with disability stuff, because they thought that they were doing the least problematic job they could find within a capitalist system. And not really having the critique of that.

So I do think it’s very much a two-way thing, where both the disabled people’s movement has been kind of isolated from other radical movements, partly due to other radical movements not getting it about accessibility and how to include disabled people. But also partly I think due to this orientation towards the welfare state, and towards demanding things from the state and kind of feeling like they can’t be too alienating towards the system that they need stuff from.

I think you mentioned independence. And pretty much everyone I interviewed, every employer I interviewed at least, talked about independence as something that having PAs gave them, which is quite interesting because it’s been said by many, many people, both within the disabled people’s movement and in other radical movements, quite rightly, that there is really no such thing as independence. No human being is independent. The only way you could be independent was if you’re stranded on an island or something and you’re completely by yourself with no other humans around whatsoever. And we’re all massively interdependent in a complex society. It’s just that often the ways in which we depend on people are not perceived as dependence. And there’s a brilliant piece written by an American disabled activist called Cal Montgomery, I think it’s called ‘Critic of the Dawn’, and I think if you Google that name and that title you’ll find it.

Lani: I might put it at the bottom of the podcast.

Steve: In which basically, the idea that things like the fact that you didn’t build your own house, that you turn your tap and water comes out, and that’s because all kinds of people are doing stuff in the whole complex system of water filtration and purification, and the plumbers who install pipes and whatever. When you walk out of your house, you’re walking on roads that somebody else laid down the tarmac or whatever, and all this other people’s labour is constantly involved in everything that you do with your life. And that’s not remarked on when it’s universal stuff that everyone, whether they’re disabled or not disabled, everyone who can accesses it accesses it. But when it’s stuff that’s specific to disabled people, when it’s things that society doesn’t consider normative for people to need assistance with, such as needing assistance to put your clothes on or to eat or to use the toilet or whatever, then that gets pathologised and treated as this abnormal form of dependence that makes a person somehow essentially dependent, somehow essentially other and incapable of what’s called independence.

I think that’s incredibly misleading. I read in another article, either American or Canadian, the phrase that ‘independence is a capitalist myth’. And I think it very much is a myth that capitalism has a lot invested in promoting, this idea of individual independence: both to mask the dependencies, many of which are deeply unjust, dependencies that make up the capitalist system, and also to promote this idea that individuals are to blame for what happens to them in their lives. That lets society off the hook, that’s kind of back to the social model. If individuals are independent, then individuals are responsible for whatever they do in their lives. If you’re unemployed, if you’re homeless, if you’re struggling with life for whatever reason, then that’s your own problem. And that’s very much the ideology that capitalism runs on. It’s very much related to the work ethic you mentioned earlier, this idea that you’ve got to pull yourself up by your bootstraps. And this is why I prefer to use the term autonomy rather than independence.

Some people might see those two terms as meaning the same thing, but I think autonomy is not about independence, it’s not about self-sufficiency, it’s about self-determination. And I think if we’re talking about autonomy or self-determination rather than independence, then we’re recognising that everyone is dependent on others, there’s no getting away from that. But within that context of being dependent on others, we can work to maximise the extent to which people have control over their own lives, can make their own decisions, are not being oppressed by others in ways that deprive them of control. And disabled people have historically been deprived of control in incredibly basic areas of their lives, to an extent that I often feel that if any group of non-disabled people were having some of the really basic areas of control in life deprived from them that disabled people routinely get, then the liberal press at least would make a massive outrage out of it. It’s one of the many ways, I think, in which white Western societies tend to portray themselves as free and democratic and different from dictatorships that are backward and other, and yet they’re doing stuff to people within these supposedly free and democratic societies that is every bit as horrifying an abuse of individual liberty as happens in any dictatorship.

I’ve gone off on one of my pet rants and swept away from the point, I think. But I think part of what’s going on here is that if we get past this illusion of independence as a thing to be aimed for, of self-sufficiency of the individual that capitalism pushes, we can start to realise a society in which we accept that we all depend on other people all the time. But we can do that in such a way that, obviously, there’s got to be bits of compromise here and there and there’s got to be recognition that some people have greater dependency needs than others, but if we prioritise the ability of the individual to live the kind of life that they want to live, regardless of whether that’s doing something yourself or having someone else do something for you. And then I do get a bit stuck on do we need some kind of exchange mechanism? Because I do find it hard to imagine a world in which helping others who need assistance is something that others do just because they want to. And that’s something I feel like I haven’t resolved and I don’t know if I will resolve.

Lani: Maybe you won’t resolve it through this piece of research. I mean, I guess every piece of research, every piece of writing’s just a snapshot of people’s thinking at the time, isn’t it?

So in a way, that’s kind of where we’re at. So if we’re looking at a world where that’s really fundamentally acknowledged, in our everyday lives, in our resistance, in our families, in every area of life, then what does that world look like? And in a way I kind of feel like we don’t really know what that world looks like, perhaps mainly because of all the different power relations that mean that the system of interdependence is so unjust.

Steve: Yes.

Lani: The fact that we get the food we get here and all of that stuff, when you look at it at a big infrastructure kind of level, we don’t have those understandings, perhaps, yet. You were talking about an exchange, and perhaps we do need an exchange. So that’s an interesting question.

I’ve got two questions. Through doing the research, what have you learned about the ways that ableism connects to other strands of oppression? You talked a little bit about capitalism. Is there anything that kind of informs those concepts or the development of those concepts from other understandings?

Steve: Well, although, interestingly in my research, in my actual primary interview research, it hasn’t come up anywhere near to the extent that I thought it would, I think there is a lot of stuff around gender that connects into this and that I’m feeling a need to try to bring into my PhD: by using literature and research that other people have done. And lots of stuff around migration and postcolonial international or world class system of nations kind of stuff, in that circle of care work, which is a problematic term, but I’m going to use it for now, because there are not many other terms that can be used in that big broad umbrella, has been very much traditionally work done by the least valued in society. It has either been the completely unpaid work of women in the home, or it has been the very badly paid work of classes of labourers who usually are some of the last secure labourers. Either they’re migrants from countries that are much poorer (countries that were formally colonised) and who therefore are in a precarious position of not necessarily having a long term right to stay in the countries that they go to work in – usually those workers are women as well – or if they’re not migrant women, then they’re often other women who, for whatever reason, struggle to find other paid work.

A lot of this, I think, has to do with the fact that independence is so highly valued in Western capitalist culture, the whole concept of dependency is devalued and therefore the work that is associated with it is also devalued. And it is not recognised as important work, it is not recognised as skilled work, and it’s also associated with traditionally sexist ideas about “This is what women do naturally for their husbands, for their children.” Of course this concept of ‘naturally’ is a complete lie, and a lot of this is very much rooted in the capitalist construction of the nuclear family, and the man goes out to work in the factories and the woman stays at home to do all the necessary but unrecognised and unpaid work that supports the possibility of a man working long, exhausting hours in a factory. Which, of course, is very much connected with the exclusion of disabled people from society. Which people within Disability Studies would advance the argument that was in many ways the establishment of factory type work in the industrial revolution that resulted in the modern form of disabled people’s oppression.

And I think, although it’s probably under-theorised, that’s probably very closely connected to the kind of capitalist expansion of colonialism and imperialism as well. I mean, people like Silvia Federici have written about that, in the context of trying to bring analysis together of gender and capitalism and imperialism. But I think relatively little has probably been done connecting disability into that. And I think those pieces need to be connected more. But all of this is literature stuff. But the fact that the work of personal assistance – I don’t even know which way round the cause and effect goes, necessarily, I think it’s probably a bit of a chicken and egg cycle. In that, the work is devalued because it is work done by women and racialised migrant populations. At the same time, is it that

disabled people being devalued comes first, or the work associated with them becomes devalued first? And then therefore the work is assigned to classes of people who are lower down in the hierarchy? Or does it go the other way round? I think it’s a bit of both.

Lani: They came up together, in a way, maybe.

You may not have thoughts on this, and the research is valid in itself, but I was thinking about, given what you’re learning in terms of doing the research, what do you think are some of the key things that we could do within our activism or within our lives, as disabled people and as non-disabled people? One or two key things that could be useful?

Steve: I think one thing that has been on my mind a lot recently, coming out of my research, is possibilities for solidarity between both disabled people and those who assist them: whether that is paid personal assistants or non-disabled friends and family members, or whatever other categories of people that includes.

And I think I was expecting there to be a really big and possibly an unresolvable tension between the interests of disabled people who employ PAs and the interests of the PAs themselves, the people who work in that job. Because I felt that, obviously, like any employer and employee, within a standard framework of looking at capitalism, their interests are necessarily antagonistic. Actually, and I think it half surprised me and half didn’t, but I think it’s a really positive thing, in some ways (I think it might have some downsides as well): people I interviewed genuinely didn’t see it like that. There were a few PAs who did feel that individual employers they worked for treated them unfairly or were very frustrating to work for. But one thing that stood out very strongly was that PAs who I interviewed felt a lot of solidarity for their employers. And there was this sense, for some people at least, that in a way, personal assistance was almost subverting the welfare state into a mutual aid kind of thing. In that it was giving money to people for doing something that helps to liberate other people and is of mutual benefit: both to disabled people who need personal assistance, and often those who work as PAs are people who are in fairly marginal and precarious positions within the labour market.

And of course, it’s poorly funded and whatever, but I think a lot of people really appreciated the relationships that they have through their job. And interestingly, a lot of PAs, in comparing their work as PAs with other relatively poorly paid work that they’d done, like say working in a café or in a shop or something like that, they felt their work as a PA was much better. They actually felt, quite contrary to what I expected people to say, that they felt they had more freedom and autonomy in their job as a PA than they’d had in other jobs. And I think a lot of that has to do with – I am bringing this back to your question – the recognition that the individual disabled person as employer of PAs is not in the same position as your typical employer, like the owner of a shop or a restaurant or a factory or whatever, who is a rich and powerful person, stereotypically, who is exploiting their workers to make as much profit as possible. Actually, in this situation, both the employer and the worker are usually relatively poor people, and the employer is not necessarily in control.

The funding is not the employer’s own personal fortune, it’s coming from the welfare state system and it is very much rationed. And both the employer and the worker have a joint interest in that being better funded. And there was very much a sense of, not so much ‘it’s me against my employer in the struggle over pay and conditions’, but ‘it’s me and my employer together, we would both like me to have better pay and better conditions.’ And the antagonist here is the bigger scale funding system.


So actually, although there’s always the contradiction of your antagonist is also the entity that you’re dependent on, in terms of activism and struggles against the welfare state, when you’re actually wanting more from the welfare state, and I think that’s a core contradiction that has been in the whole anti-cuts movement since 2010, that again, I’m not quite sure how to resolve. But I think there’s a lot of possibility for solidarity in this PAs and employers together against the system that oppresses both. And yes, it’s contingent on getting a certain kind of welfare state funding. But I think quite a few of the PAs I interviewed actually talked about how they’d been politicised about disability through having worked in that job. And how they felt that was a really positive thing that they’d got that politics. So I almost see, in certain networks of people at least, there’s been a kind of chain of people getting radicalised and radicalising others through being in this relationship, and actually through being exposed to the contradictions and tensions that there are around it.


So I don’t know if I’ve answered your question properly, but I think there are a lot of possibilities coming out of the personal assistance relationship for solidarity and collaboration and bringing disabled and non-disabled people’s interests into a productive kind of tension with each other.


Lani: Brilliant, thank you very much, that’s ace.


We’ve come to the end now, but I think that’s given us a lot of food for thought, certainly me anyway. And we can always pick up the discussions in later podcasts and various forums and things. I would like to hear all your comments about the interview and look forward to hearing from you. Bye.

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