It can be underappreciated just how ugly ‘care work’ is. Less in terms of the literal shit, which often comes to mind when you tell someone you work in the sector, but more in terms of its interpersonal side. It’s hard to miss the basic, corrosive social dysfunction of one person’s attempt to reconcile their need for dignity with another’s compulsion to work to the clock. In that case it’s easy enough to sympathise with both the ‘carer’ and ‘client’. What can mark you more deeply though are the ugly little tyrannies of people - carers and clients - who feel so out of control in their lives that they can’t seem to help but to try and dominate anyone who gets close to them.

On some level though, it can be easier to work in these ‘harder’ environments. Between us we’ve worked five different kinds of precarious care job over the last seven or eight years: zero-hours domiciliary care, support work for disabled students, precarious teaching with disabled students, freelance support work, and personal care for disabled adults. Working alongside people whose wounded, aggressive behaviour imposes a clear distinction between your own emotional needs and the expectations of the job is obviously alienating, but at least then the social relation involved feels at least to some extent clear. You’re there because you need the wage, and they’re there because they need the support, even - or especially - when they treat the people around them like shit.

It’s probably not a coincidence that in the deindustrialised northern port city where one of us grew up, former dockers and trawlermen were some of the hardest to work with. For those that survived life at sea, which was an achievement given the relatively high probability of getting dragged overboard or having your whole ship disappear beneath the waves, men found their bodies ruined by the work by their 40s or 50s. Growing up in the city, it was easy to wonder where all the seamen had gone. Starting a care job, you realised the survivors were often bed-bound, seeing out the rest of their lives as some of the most resentful, racist and violent of clients.

It’s different when you develop a genuine emotional bond with someone. At the same time that the tenderness and friendship can be the main thing to sustain you, the inhumanity of the whole system feels that much starker. Rushing to the door, sweating, already late from the last appointment. Racing then to wake someone, help them out of bed, into the shower, out of it again, dried, dressed, downstairs into their chair, breakfast prepared and served, medication organised, and out again in time to be at the door of the next person all within half an hour. The same thing repeated relentlessly through the day, with breakfast gradually easing into lunch and then into dinner. Inevitably, those that need the most often receive the least, insofar as those with the higher physical and personal care needs have less time left over for a basic minimum of undisturbed conversation. It’s hard to really sit with the loneliness of that kind of life. Seeing only a rushed carer, sometimes just once or twice a day, for less than thirty minutes, and no one else.

Even under these conditions, you get to know people over time. Bit by bit you learn how somebody thinks about life, how they like to be dressed or washed, the kinds of things that will make them laugh. You show each other actual care, take an interest in each other’s lives and families. If your shift patterns change - something which happens frequently and arbitrarily, especially on zero-hours contracts, and something over which you have little control - you come to miss each other, and look forward to seeing their face spread open with surprise on a day when you do actually turn up.1

If you end up working with just one person for a long time, for example through the government’s Access to Work or Direct Payments schemes, this kind of personal and emotional interdependency can grow even stronger. As a support worker you can come to find that it actually isn’t only the wage that you’ve come to depend on, but them too, this person that you probably wouldn’t have otherwise met.

If it is one of these schemes that you’re working through, this person is also, basically, your boss. If it’s Access to Work you’ll often be working for them freelance, invoicing from shift to shift, with no job security, no holiday pay, and probably no sick pay. If you depend on them for your income alone, no matter how long you work together or how close you become, discussions about planned holidays will probably always feel like a punch in the gut. How suddenly the feeling of warmth and security can evaporate as you realise that their scheduled time off will place rent out of reach again for another month. Sick days, meanwhile, yours or theirs, are much less predictable but can be just as destabilising.

Access to Work was first introduced in 1994 as a government support scheme to finance workplace accommodations for disabled workers. This includes transport, equipment, and site adaptation costs, and well as the wages of support workers. Almost 50,000 people received support for accommodations through the scheme in 2022-23 (costing the government £182.9 million), including around 24,000 people who received payments for support workers. In mid-2023, a further 23,000 people were estimated to be waiting on the results of an application. Despite a steady increase in the absolute number of recipients, the scheme is notorious for poor communication, extensive delays, and administrative errors. Direct Payments meanwhile were introduced in the late 1990s, and give recipients control over a personal budget that they can use to purchase support services, such as directly employed personal carers, bookings with private care agencies, or transport, food, and social expenses. The 2023 Skills for Care survey estimated that in 2021/22, 69,000 direct payments recipients employed around 100,000 support workers between them.

This kind of arrangement is becoming more and more common with the marketisation of adult social care. Post-war employment policy was premised on excluding disabled people from the labour market, through a combination of out-of-work benefits and segregated employment in specialised ‘Remploy’ factories. The first of these units opened in 1946. Originally housed in whatever the government could find (including derelict cinemas, chapels, and skating rinks), the factories produced a broad range of goods, mainly for the public sector, often using recycled materials (for example building violins for school orchestras from repurposed D-Day landing equipment). The factories were also major social hubs for disabled workers, hosting social clubs, dance groups, organised seaside trips, and inter-factory darts and dominoes leagues. By the late 1980s the number of factories peaked at 94. After this point they gradually declined, as Remploy shifted its focus onto moving workers into mainstream employment. The last factory closed in 2013, and what remained of the company was privatised two years later.

By the 1990s, increasing pressure, both for inclusion by disabled people and against social welfare by anyone with an axe to grind, had led to an attempt to re-integrate disabled and chronically ill people into the mainstream labour market, a process terroristically reinforced by the onset of austerity in the 2010s. Schemes like Access to Work and Direct Payments have increasingly come to replace both socialised forms of public provision and impersonal contracts with private care providers, with disabled people now forced to navigate notoriously brutal assessment processes in order to secure money to employ support workers themselves. This transition has seen a fundamental shift in the character of class conflict for many in the sector, as the antagonism between support workers and managers is increasingly displaced onto the relationship between support workers and our clients themselves.

One of us worked for several years as a personal carer for someone who received Direct Payments for 24/7 support. They were a student studying in London, and although the little team of carers they employed almost all lived in the capital and worked with them there, their funding was provided by their local authority back home, and so none of the rates were set to include London weighting. While it’s fairly standard for those receiving a few hours of support per week through PIP or Direct Payments to be directly responsible for managing their own care and hiring workers, this client’s particular situation was an increasingly rare relic of Blairite welfare policy - which they had to fight to retain as a form of legacy benefits. They were supposedly one of the lucky ones, ‘disabled enough’ to be entitled to funding for 24/7 care but without being ‘too disabled’ to employ their own carers - this freedom coming with the burden of essentially becoming a full time unpaid manager.

When the pandemic hit, they were forced to move out of their university halls and isolate back in their hometown. The situation was patently horrible for them as an immunosuppressed person, but it also meant a dramatic shift for the team. Since most of us were based in London, we suddenly had a huge and expensive commute, which was paid for out of pocket by the person we supported. And because paying for daily trains was financially unsustainable, in addition to the increased exposure to a potentially deadly virus, we each agreed, with little alternative, to work compressed shifts, doing all our monthly 96 hours in one gruelling session.2

In many ways, the stresses of this form of work are almost the opposite of the experience of industrialised domiciliary care described above. Rather than the intense pressures of completing a set of tasks against the clock, there was the slow strain of eking out the hours, the often interminably dull periods of reprieve fringed by a hypervigilance brought on by the possibility of being needed at any time. Sleeping in the next room, we would have to be responsive to shouts through the walls if something was needed, which meant that sometimes staying awake was just easier. During the day, the work varied, depending on what they wanted to do; which could mean minimal attentiveness to basic needs, or intense physical and emotional engagement - either way, this was dependent on what they wanted and needed, but it required a quite intense level of flexibility; it’s not exactly fair to expect someone to plan every aspect of their life in advance.

While talk of contradictions can sound abstract, this kind of situation provides an embodied experience of the antagonism between your own legitimate interests and the interests of another: if the person you are caring for literally requires you to be awake at any point in the night, if they wish to turn over or to go to the toilet, your own needs have to take a back seat. In one harsh example, a member of the team lost their job due to going off sick during a mental health crisis. This felt like another case of the support needs of care workers and disabled people (including disabled workers) being forced into a damaging antagonism. It also reflects one of the ways the organisation of society relies on a distinction between disabled people (as receivers of welfare) and non-disabled people (as producers of value) which doesn’t map onto reality.

Another particularly grim example of this was when one of us, 12 hours into a shift, received news of a friend’s death, and had to continue working for another 24 hours, which was the earliest time another carer could be available. Absent social mechanisms that could provide a safety net for such emergencies, eroded from years of privatisation, our needs were in direct opposition. It’s not fun having to push through grief to get to the end of your shift, but neither is it fun or fair to have the person who attends to your basic needs be in tears - never mind the psychic toll it must take knowing that you’re one emergency away from being fucked. The wage is a poor compensation for this - not just because, literally, it is usually so meagre, but also because it becomes a barrier to two people being human on the same terms - a social relation arbitrarily uniting two individuals at the same time as dividing them.

The nature of the shift work meant that none of the carers had much contact with each other, except for brief handovers when the next person arrived - though at the end of several days without much sleep, you didn’t really feel like having an extended chat. The Whatsapp group for organising shifts and other work related things included the person we cared for, as well as their dad, who’s behaviour was much more typically ‘managerial’ (for example engaging in tactics like calling us individually before team meetings to try and make us feel guilty for asking for paid travel time). At the same time, it was clear that he really just wanted his child to have a life as free as possible of the ritual indignities imposed upon disabled people in the UK.

The inclusion of our client in the organisation of their care was an essential part of safeguarding their sense of agency and dignity, but it had the secondary effect of restricting the space for people to talk freely with each other about frustrations and conditions. I remember one person expressing difficult feelings about our working conditions, and a few days later being mysteriously removed from the group (and from the team). They were somewhat hesitant after I reached out to them, and in any case attempts to try and talk about things fizzled out - even if the situation could somehow be undone, the mutual trust had been broken. Similarly, attempts to reach out to other carers, with the aim of gauging frustration or difficult feelings, were not easy. People felt uncomfortable about backchannel communication, or guilty about suggesting that they weren’t fine with everything going on - or alternatively just felt that there wasn’t really anything we could do without jeopardising the wellbeing of someone who we not only cared for, but did indeed care about. Ultimately, we just had such little day-to-day contact with each other that it was hard even as workers to build the trust required to be honest with each other, let alone to be honest with the person we supported.

Our client’s ability to choose their own carers, instead of being supplied with an ever changing stream of workers from an agency (who are usually overworked and constrained by the insurance policies of their employers) was essential for them to feel dignity and control over their own life, as well as allowing for highly desired flexibility. At the same time, the conditions which gave them freedom and dignity were ones which were for us, as workers, utterly depleting. To push back against them, however, would be either to compromise their sense of agency and control, or force them to spend money which they didn’t have. Trying to get more from the council meanwhile could carry risks of jeopardising their legacy benefits, or undertaking potentially life-changing funding re-assessments.3 Under these conditions, the relationship between those giving and receiving care represents a particularly acute case of our society’s tendency to pit sections of the working class against one another.

Despite all the barriers to organising, the broader sector has seen a substantial increase in militancy, with recent strikes by Birmingham City Council home care workers (2017-2019), Glasgow City Council care workers (2018), Sage nursing home workers in London (2020-2021), St. Monica’s care home workers in Bristol (2022), Hestia care workers in London (2022-2023), and Silverline care home workers in Glasgow (2023). The impact of the pandemic on the escalation of class conflict is obvious. Between 2020 and 2021 these strikes took place against a background of much more widespread but less visible struggles over PPE, furlough and sick pay.4 Through the course of these disputes, self-organised, cross-union carers’ networks set up the Care Worker Coronavirus Action Group, which later developed into Care and Support Workers Organise (CASWO), a campaign organisation built around a broader program of industrial demands. CASWO, alongside the Pan-African Workers’ Association (PAWA), a large network of mainly Zimbabwean carers, have been at the forefront of a national recomposition of militant workers in care.

This rising tide is a crucial opportunity for those of us directly employed by our clients to break our isolation and develop links with other workers. So far these strikes have all taken place in private care homes or local councils; that is, among larger groups of workers who all share one employer and often share a workplace. In contrast to the fragmentation and isolation of direct employment, these shared conditions and day-to-day relationships make it much easier to organise conventional industrial disputes, not least because these workplaces more easily conform to the legal conditions for protected collective action. By contrast, the more fragmented and isolated your work is, the easier it is to fall through the gaps. While working as a support worker for disabled students, one of us was once surprised to learn that the Independent Workers of Great Britain (IWGB), one of the unions on campus, had apparently already won the London Living Wage for all outsourced staff. Support workers certainly didn’t receive it, and at the best of times nobody seemed to understand who we were or how to relate to us. Security never knew if they should let us in. Teaching staff couldn’t work out whether to treat us as students or colleagues. We ourselves never knew who any of the other support workers were as we were facelessly directed by a couple running the agency from elsewhere in the country. The IWGB’s gains created an opportunity for support workers, but we would have to break our isolation to really make the most of it.

It will take time and reflection to work out what exactly directly employed workers can take from the recent care sector strikes and what there is actually no real way to adapt. To the extent that the struggle over working conditions takes place not abstractly between workers and some distant managers, but directly between carers and these people whose lives we’re so intimately bound up with, who depend on us personally for support with some of their most basic human needs, escalating a dispute always risks breaching the baseline trust needed to make the work possible to begin with. As with most other forms of caring labour, part of the work is to make the fact that it is actually work disappear for the person receiving it.5 Shattering that facade in a conflict with management is one thing, shattering it through the refusal to meet the needs of an individual who you’re close to and who personally depends on you is another. This is a relationship between employer and employee unlike any other.

The challenge for us is to shift the antagonism away from our clients and back onto the state, but without simply becoming a protest group disconnected from workplace organisation. Even if the client technically employs us, the budgets are still set by the government, and it’s on this level that we have to fight to secure better wages and conditions without clients going through dangerous and emotionally crushing re-assessments. In spite of the objective contradictions imposed by the employment relation, this is one of the various levels on which carers and clients do actually have a unity of interests. We both have an interest in fighting alongside each other for increased funding and better administrative standards and we should embrace forms of organisation which enable us to coordinate together in pursuit of these aims. At a workplace level, although our relationships with clients are delicate, they’re also not made of glass, and ensuring their sustainability requires mutual recognition and a negotiated process of give and take. We cannot fully subordinate our needs to theirs, as much as they cannot fully subordinate their needs to ours. The limits of this kind of negotiation can only really be given by the specific relationship itself, but it’s also not something that we have to face alone. Support workers can support each other to navigate all kinds of workplace issues, especially in cases where they share the same clients.

Beyond just increasing budgets, many in the sector are also organising around a demand to bring adult social care under democratic public control.6 This clearly cannot mean returning to the suffocating and oppressive conditions of post-war nationalised care provision. The disabled people’s movement has won gains in independence that must not be reversed. Real democratic control would have to mean that everyone with any connection to the sector was able to meaningfully participate in decisions about its organisation, and that anyone in a position of responsibility was subject to meaningful democratic accountability. Under these conditions, it’s likely the sector would change almost beyond recognition. A clear distinction between ‘the care sector’ and other aspects of life would itself probably be one of the first things to go.

The depth of these changes cannot be realised within society as it currently exists. It’s not only private companies that are disciplined by competition on the world market, but governments and nation states too, and that sets limits on any industry’s ability to place human needs over money. That recognition doesn’t mean giving up on the workplace and waiting for a revolution. It means finding every possible means in our day-to-day struggles to increase our confidence and democratic control in the workplace. No one way guarantees this, least of all nationalisation - as the current state of the NHS clearly demonstrates - but for all its limitations nationalisation has the potential to re-unify an increasingly fragmented social care sector in struggles against a single employer; in that case, the state, and to that extent shouldn’t be dismissed out of hand.

Care workers couldn’t impose this kind of change alone. But this is a demand that concerns all of us. At least all of us who don’t have enough properties to sell to rely on elite private care in the case of a sudden “change of circumstances”.7 We could win this only as a class demand, taken up by and fought for by all of us who have a stake in it, to save not only our own skins but those of everyone around us.

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  1. One of us once had a client who would be quite reserved around their family, but would burst with warmth and affection as soon as we were alone in the bathroom. On every shift together they would drag us both, them fully naked and completely un-self conscious, into the shower for a long, drenching hug. As inconvenient as it was to get completely soaked at the start of a shift, deep down it was always the highlight of a day. 

  2. People in receipt of Direct Payments, meanwhile, received no additional funding for PPE, and so either they or their workers had to cover these costs out of pocket. 

  3. Since the funding for directly employed support workers is tied to arbitrary and brutal assessments, there’s always the risk that attempts to push for more could backfire. That’s to say nothing of the deep personal costs such assessment processes impose on the applicant. 

  4. See: Alison Treacher (6 June 2020) ‘Sympathy Won’t Win Us Better Conditions: Dispatch from the Frontlines of Care’, Spectre Journal

  5. For another example, see: Maya Andrea Gonzalez and Cassandra Troyan (26 May 2016) ‘Heart of a Heartless World’, Blindfield Journal

  6. In the case of local council contracts with private care providers, increased spending is just as likely to be sucked out as shareholder dividends as it is to be invested in improving working or living conditions. Hence the demand for de-privatisation. 

  7. One of us has a younger sister who in her mid-20s, with two young daughters, more or less overnight developed life-changing seizures, which strike unpredictably, often several times a day, and profoundly impact her speech, cognition, and mobility, leaving her dependent on a support worker through Direct Payments for support. Most of us don’t like to think about it, but life can come at you fast. 


Lyra Unguent

Lyra is a care and support worker based in London.

Connor Cameron

Connor is a care and support worker based in London.