Take Care

Four perspectives on caregiving and the care crisis

“I was born too late, into a world that doesn’t care’

(Sandi Thom, I Wish I Was a Punk Rocker, 2006)

Reading books was something I didn’t have much time or energy for in the 28 years I was a caregiver, and I am only slowly recovering the inclination and the skill. Recently I have been reading quite a lot about care - intentionally with the fourth book mentioned here, less so with the first three.

Cancelled: the Left Way Back from Woke  (Umut Özkirimli, 2023)

Cancelled is an interesting account of what Özkirimli calls “the commodification of identity”, and how this has drawn so much of the contemporary left into a culture war with the right  - a culture war that diverts attention from a genuinely radical politics capable of addressing the real problems facing humanity and nature. Not directly relevant to caregiving, one might suppose. But right at the start, in the first paragraph of the book, it hits you - Özkirimli reveals that “it is the first book I’ve written after the death of our five-and-a-half-year-old son Luca in 2018, following an epic struggle with neuroblastoma, a rare form of childhood cancer. It is the most personal book I have written so far, inspired and shaped by the lived experience of the last five years, and a great deal of soul-searching.”  It is clear by the end of Julie Bindel’s interview with him, here , that the “anger level of grief’ Özkirimli experienced caring for his dying son contributed directly to his subsequent critique of the emptiness and cruelty of contemporary identity politics, particularly its body-denying ‘trans’ manifestation.

Foundational Economy  (Foundational Economy Collective, 2022)

This book is about “collectively provided goods and services which are the infrastructure of everyday life”. The foundational infrastructure, the authors suggest, is being decimated by economic policies which prioritise productivity and GDP growth.

Care services for adults are an important part of the Foundational Economy. Here pursuit of productivity growth is problematic, as labour is both an input and an output, and attempts to improve productivity almost inevitably result in a decline in service quality.

The authors chart how, from the 1980s on, neoliberal orthodoxy pushed through a combination of privatisation, outsourcing, and regulation which assumed, without evidence, that this would lower costs and improve service delivery. Adult residential care is a case in point. Private equity care chains, financed by debt, entered the sector in a big way, expecting returns of 10-12%, and determining conditions for the sector as a whole. To maintain this return on their investment, they exerted constant downward pressure on working conditions and care standards, and used threat of closure to demand state bailouts to protect them from loss.

The collective’s calculations show how much residential care costs would be reduced in practice if residential care facilities were provided, as they used to be, by local authorities with access to low-cost state finance at 5% or less. Earlier papers by some of the same authors, here and here, suggest that what is needed is not just lower cost finance, but innovation in service delivery that is more responsive to citizen need, balancing residential care and home care.

This analysis is extremely illuminating. But it is limited by confining its attention to an economy which includes only goods and services provided by institutions, and paid for with money. This limitation is not a problem for most of the foundational economy (railways or broadband, for example). But adult care is not provided solely by institutions in a marketplace - unpaid care by family and friends is massively important.

Reliable data are hard to come by - a reflection, it itself, of the invisibility of unpaid care. The Department Of Work and Pensions’ Family Resources Survey suggests that around 7% of the UK population provide informal (unpaid) care. A YouGov survey for Carers Week suggests that 20% of UK adults currently provide unpaid care, and that another 30% of UK adults have provided unpaid care at some time in the past. Whatever the source, the numbers involved are huge. Even where paid care is provided, family and friends are involved in organising the care, and covering when the paid care is temporarily unavailable. It seems clear that, where care is involved, a full picture of the foundational economy cannot be confined to the formal, paid sector.

The Rise and Decline of Patriarchal Systems (Nancy Folbre, 2020)

Nancy Folbre’s book is an ambitious analysis of the intersections between capitalism and patriarchy, and how these are changing over time. It’s not the easiest of reads, and her continued mixing.of language and concepts derived from mainstream (neoclassical) economics and Marxist political economy can sometimes divert attention from what she iilluminates. But care, alongside childbirth, is central to her analysis, and she is critical of “national income accounts that treat care for others and investment in human capabilities as just another form of consumption, rather than a fundamentally important investment in human and social capital.”

Folbre recognises that much of the care that is provided, particularly for the elderly, is unpaid - “Reliable, high-quality care cannot simply be bought, because it requires empathy, connection, and commitment.” Unpaid care is, and has to be, part of the overall care system that supports the functioning of the wider economy. But the main burden of care responsibilities within the family has continued to fall on women, and while job opportunities for women have improved, failure to make adequate allowance for those responsibilities means that only women who do not give care to others can benefit from labour market gains without suffering what Folbre calls the ‘care penalty.’

“Obligations to care for dependents help reconcile tensions between individual and group welfare  - and, more broadly, between self-interest and altruism — in ways that are particularly costly to women ….. Women should have as much space as men to pursue their own self-interest, but that does not mean that the total space for self-interest should expand at the expense of care for others. In order for women to gain more rights, men must shoulder more responsibilities.`’

Greater equality between the sexes in balancing paid work and care is necessary, Folbre suggests, but not sufficient. It’s not just care provided by women that is devalued - caregiving itself is penalised, regardless of sex. How groups in the labour market are rewarded depends on their bargaining power, based ultimately on their willingness and ability to withdraw their labour. Those who are dependent on the care of others have little bargaining power, and the emotional commitment that is such a crucial component of caring makes withdrawal of care by caregivers hard to even contemplate. Change may come, Folbre believes, but only from political action by a coalition of groups adversely affected by long-term deterioration in care provision and the damage this will cause the global economy.

Who Cares (Emily Kenway, 2023)

For all the emphasis in the Foundational Economy and Folbre texts of the need to recognise the importance of care, there is no sense of what is specific about the lived experience of caregiving - what it actually involves, and what it does to you.

Hearing an inspiring interview on BBC Radio 4’s Woman’s Hour with Emily Kenway in early May, I anticipated that her book, Who Cares, would approach care in a way that was rooted in the lived experience of giving it.

Sure enough, lived experience, hinted at in the opening paragraph of Cancelled, is conveyed viscerally in the opening thirteen pages of Kenway’s book. Here, she shares the pain, the stress, the exhaustion, the isolation, the tenderness, the love, the grief, and much more that she experienced in the years she spent as the main carer for her terminally-ill mother. And, she emphasises, if such experiences are not familiar to us we should be prepared that they could well become so at some time in our life.

“This was my past. If it hasn’t been yours yet, the odds are it’s coming. We are only ever temporarily well, temporarily able and temporarily young. Accident, illness and old age will be part of our lives at some point, in our own bodies and in those we love. It follows, then, that we should also expect to be caregivers.”

It is clear from the stories of caregivers who Kenway interviews that there is no set pattern to caregiving. The precise needs of people needing care differ, as do the circumstances of caregivers, their abilities to cope, and what does or would support them. Reading these accounts, it is clear that I was spared many of the difficulties that caregivers often endure. The start of my caring responsibilities coincided with a higher education crisis that encouraged my employer to offer a voluntary early retirement package. Not only was I able to access a pension that was at least adequate, I was given a temporary part time research project that could, thanks to the nascent internet and a dial-up modem, be done at home. So I rarely had to juggle job commitments with unpredictable care needs, and I didn’t need to navigate the care system, oversee outside carers, and cover for them when they didn’t turn up or when there was a short-term emergency that had to be responded to. Once a fortnight, our son would take over Angela’s care for a weekend, giving me a short break, and an opportunity to see to the more limited care needs of my elderly mother, who lived 100 miles away.

Most carers are not so fortunate (or privileged). They cannot afford to give up their paid job, but have to contend with employers whose sympathy for their situation is often minimal or non-existent.

“Our expectations of our working lives must change. Rather than the ideal of continuous presence, we need to normalise repeated absences of varying lengths as people deal with emergencies, illnesses and the increased needs of loved ones.”

On the whole women are much more involved than men in caregiving. It’s not just that, as survey evidence confirms, more women than men are caregivers. The diversity of experience among Kenway’s interviewees suggests that why women and men give care, and the type of care they give, varies too. There are still widely-held expectations that if someone in a family has care needs, it is a female relative who should meet them. When men give care it seems to be mainly for a partner, out of love. When women give care, it is often for relatives, out of a sense of duty.

”When men are considered responsible for their elderly parents, this often manifests as financial responsibility rather than practical. It’s their wives - so, the daughters-in-law of the people who need care - who perform the actual caregiving itself.”

Kenway describes a telling experience when she was able to arrange for other relatives and paid professionals to provide cover so she could take a break from her 24/7 care responsibilities. She went on a long distance walk, in the course of which she came across older men, also walking on their own. A couple of them told her that their wives couldn’t do the walk with them because they were caring for their mothers  - not the women’s own mothers, but the husbands’ mothers.

Kenway makes a number of suggestions as to how the burden of caregiving could be eased. These include a caregiver’s income based on actual costs and needs, and what Kenway calls a ’commons of care’ - a network of individuals with whom care responsibilities can be shared. Above all, what is needed is a deeper acknowledgement of what all caregivers know - that we are not independent individuals, disconnected from each other.

“Solving the care crisis is not, at its root, about shifting money or inspecting the quality of care homes, though both those aspects matter too. It’s a question of dethroning the falsehood of the free individual and replacing it with a conception of self that’s embedded in relationships, whose autonomy is predicated on their support. We cannot expect to live a life entirely in pursuit of our own projects, but instead one that better resembles a duet between those ambitions and the requirements of love.”

Such an acknowledgement would require rethinking the relationships between men and women, and between paid work and personal care, taking into account the unpredictable bodily reality of caregiving, which won’t conform to scheduling routines needed by care agencies. We have, Kenway suggests, to recognise that caregiving is an essential, and increasingly important, human activity, which needs to be shared equitably -  far removed from the 1950s model of men as providers and women as caregivers ”today we need to become provider-caregivers, humans who provide for their kin materially, probably by working, and also perform care.”

“Care remains hard,” Kenway acknowledges, “because love is hard. Care stays unpleasant at times, because bodies are unpleasant at times.“ At the same time, she suggests, caring for each other should be recognised as “a beautiful thing, a thing more important than anything else in the world.”

Both Emily Kenway and Nancy Folbre refer in their books to the work of political philosopher Nancy Fraser, who emphasises how although the current economic system depends on caregiving, it undermines care by starving it of resources.

”What is required, above all, is to overcome financialized capitalism’s rapacious subjugation of reproduction to production - but this time without sacrificing either emancipation or social protection. This in turn requires reinventing the production-distribution distinction and reimagining the gender order. It remains to be seen whether the result will be compatible with capitalism at all.”

(Nancy Fraser, Contradictions of Capital and Care, New Left Review Jul/Aug 2016)

Kenway’s vision of a society where caregiving is truly valued requires ending its subordination to private profit and male privilege. She doesn’t address the issue posed at the end of Fraser’s 2016 essay, though, leaving as an open question whether or not a caregiving economy can be achieved without dismantling capitalism (and patriarchy).