What does it mean to be a carer?

Professor Ann Stewart, University of Warwick, UK.

Book Cover for ReValuing Care in Theory, Law and Policy

ReValuing Care in Theory, Law and Policy: Cycles and Connections

Why would anyone want to call themselves a carer?  Are not all of us carers in one way or another?  As feminists have long argued we all give and receive care to a greater or lesser extent throughout our lives, as friends, lovers, family or community members. Privileging ‘a carer’ is to isolate a particular form of autonomous actor when we need to recognise that all are involved in relationships that are fundamental to the functioning of any society (Herring 2013).

Yet caring is often not recognised, as a number of international organisations, academics and activists have argued in the debates over the Sustainable Development Goals (SDG) (Razavi 2007, Sepuldeva 2014, Budlender and Moussié 2013). They have called for policy development to take account of the 3 Rs – recognise, reduce and redistribute the burden of care (Elson 2008), with some success.  Target 5: 4 of the SDG equality goal requires all to: recognize and value unpaid care and domestic work through the provision of public services, infrastructure and social protection policies, and the promotion of shared responsibility within the household and the family as nationally appropriate.

While raising the political profile of unpaid care is important, framing the ‘problem’ in this way can obscure the wider implications of what feminist political economists term social reproduction (SR). Rai and Hoskyns describe it as:

biological reproduction; unpaid production in the home (both goods and services); social provisioning (by this we mean voluntary work directed at meeting needs in the community); the reproduction of culture and ideology; and the provision of sexual, emotional and affective services (such as are required to maintain family and intimate relationships) (2007, p. 300).

SR captures the crucial relationship with ‘productive’ activities while recognising the range of ‘tasks’ involved. It encourages us not to focus only on specific groups who are seen as in need of care or who provide particular forms of care.  It avoids the language of ‘burden’ while requiring us to address what feminist political economists call ‘depletion’.  Rai, Hoskyns and Thomas define depletion in SR as ‘the gap between the outflows – domestic, affective and reproductive – and the inflows that sustain health and well-being’ (2014, p. 86). Depleted social reproduction (DSR) is the level at which ‘the resource outflows exceed resource inflows in carrying out social reproductive work over a threshold of sustainability, making it harmful for those engaged in this unvalued work’ (ibid., p. 88–9). They argue that there are ‘three strategies to reverse DSR – mitigation, replenishment and trans-formation’ (ibid., p. 98). DSR is mitigated ‘when individuals attempt to lessen the consequences by, for example, paying for help’. It is replenished when ‘states or private bodies contribute to inflows’ ….). Restructuring of gender relations and the recognition and valuation of SR are necessary for its transformation (ibid., 2014, p. 99).

Thus for policy makers to recognise SR it is essential to develop appropriate ways of measuring the net cost of SR. It has to be quantified in some way.  In legal terms it has to be ‘claimable’ but on what remedial basis?  Is an individual being ‘compensated’, ‘rewarded’ or ‘remunerated’ (Sloan 2013: 24)? Each remedy points to a different way of valuing the activities associated with caring and mitigating the consequences. Compensation focuses ‘on the loss or detriment suffered by the carer as a result of taking on caring responsibilities’ (ibid.). Or is ‘the true value of the services performed by the carer as a benefit conferred on the care recipient […] recognised only if we are prepared to speak of “remuneration” or “reward”’ (ibid.)?

My chapter in the ReValuing Care edited collection (Stewart 2017) focuses on the way in which carers in the UK are understood in the domain of paid work, within recent social welfare legislation, notably the Care Act 2014 and in private law. What do we learn from the way in which carers appear in these different areas of law? What form of value is associated with these different locations? Is there any coherence in the way in which carers are valued for their activities? If so, is carer status associated with a reward for altruism, compensation for the social and economic costs associated with caring, or recompense for labour expended? Are carers valued as workers, as citizens, or as community or family members? Are they valued for doing something ‘out of the ordinary’? Through the development of this legal identity are we seeing a value being given to caring as a form of socially reproductive labour more generally?

I am presently developing these ideas further with the benefit of a Leverhulme Fellowship. My focus shifts to Kenya where I am considering the contribution of community-based ‘woman to woman’ marriage practices to the provision of care, particularly for the elderly, when there is little social protection available for the elderly. Ojwang and Kinama describe the practice:

‘Woman-to-woman marriage is the traditionally recognised union between two women, one of whom pays the dowry in order to marry the other woman. ….. [I]t is usually a union aimed at promoting the social or economic status of the women who participate in it. … The purpose of the union is the continuation of the family line and the enjoyment of a family life’. (2014, p 416)

The research seeks to explore the extent to which and the way in which such arrangements provide support and/or security for the parties involved and their dependants.  The aim is to understand whether the everyday practices of caring for older people particularly women, traditionally woven into communal relations, are changing in the socio-economic and political circumstances of contemporary Kenya. Are woman to woman marriages evolving into a way of recognising and ‘rewarding’ caring labour undertaken by younger woman for some older women who have access to some assets? How are claims for recognition particularly made by the younger woman understood in the ‘formal’ courts and within community dispute resolution practices?

References

Budlender Deborah and Moussié Rachel (2013) Making care visible Women’s unpaid care work in Nepal, Nigeria, Uganda and Kenya Action Aid Available: http://www.actionaid.org/sites/files/actionaid/making_care_visible.pdf

Elson, Diane 2008 ‘The Three R’s of Unpaid Work: Recognition, Reduction and Redistribution’, Expert Group Meeting on Unpaid Work, Economic Development and Human Well-Being, UNDP, New York, November

Herring, Jonathan (2013) Caring and the Law Oxford and Portland, Oregon: Hart Publishing

Hoskyns, Catherine and Rai, Shirin M. (2007) ‘Recasting the Global Political Economy: Counting Women’s Unpaid Work’, New Political Economy, 12(3): 297–317.

Ojwang, Jackton, B and Kinama, Emily, N (2014) ‘Woman-to-Woman Marriage: A Cultural Paradox in Contemporary Africa’s Constitutional Profile’ Verfassung und Recht in Übersee VRÜ 47: 412-433.

Rai, Shirin M, Hoskyns Catherine and Thomas Dania (2014) ‘Depletion’ International Feminist Journal of Politics 16(1): 86–105.

Razavi, S. 2007. ‘The Political and Social Economy of Care in a Development Context’. United Nations Research Institute for Social Development, Gender and Development Programme, Paper Number 3.

Sepulveda Magdalena Carmona (2014) Report of the Special Rapporteur on Extreme Poverty and Human Rights A/HRC/26/28 Geneva: United Nations

Sloan, Brian (2013) Informal Carers and Private Law Oxford and Portland, Oregon: Hart Publishing

Stewart, Ann (2017) ‘Carers as Legal Subjects’ in eds Rosie Harding, Ruth Fletcher, Chris Beasley ReValuing Care in Theory, Law and Policy: Cycles and Connections 148-164.

Caring for a Parent living with Dementia and changes in Family Relationships

Prof Elizabeth Peel, Loughborough University, UK

Elizabeth Peel is a Professor of Communication and Social Interaction in the Department of Social Sciences, Loughborough University, UK @profpeel

Book Cover for ReValuing Care in Theory, Law and Policy

ReValuing Care in Theory, Law and Policy: Cycles and Connections

Caring for a parent living with dementia is a stressful thing to do. We know quite a lot about spouses or partners who are cast in a caring role because their loved one develops dementia, but we know much less about the experiences of adult children of parents with dementia. Recent Australian research [1] has found that sixteen per cent of their sample of over 500 family carers had contemplated suicide in the previous year. We also know that dementia care disproportionately impacts women [2].

In my book chapter called ‘“It has had quite a lot of reverberations through the family”: Reconfiguring relationships through parent with dementia care’ in the Revaluing Care edited collection, I consider parent care by examining the accounts of eleven people who had cared for their mother or father. These people participated in the focus groups in the ‘Duties to Care’ project or the interviews in the ‘Dementia Talking’ project (see http://www.dementiaproject.net/).

Some of the behaviour changes in their parent had a big impact on these participants. For example Derek* said ‘it’s terrible to think your own mother doesn’t know you’, and he found it very difficult to cope when his mother thought that he was his father. Another man, James, pretended to be his father in order to keep his mother calm and content. These two examples show how parent dementia care can change how relationships in families usually are – those normative ‘rules’ about roles in families – into something new and reconfigured by the illness.

These participants also talked about how disagreement between themselves and their brothers or sisters also made parent care difficult. All but one of the people I interviewed emphasised conflicts with their sibling rather than a more collaborative approach – working in partnership to care for, and support their parent. Victoria was the lone voice, in this study, who said about her sister, ‘we keep each other sane’.

The tensions that they discussed with their siblings included having different views about the state of their parent’s health, money, and how they communicated with their parent. For instance, as Jan said ‘the worst thing was trying to communicate to my siblings how bad mum was’. In some cases, like Jan’s, relationships between siblings had ‘totally broken down’. In other cases, families had divided roles between them as a way of managing potential disagreement as well as the tasks and responsibilities involved in caring for a parent living with dementia. For example, Sue said that her sister has ‘the cash card but I keep my eye on the bank account’.

Caring for a parent living with dementia can include managing and coping with behavioural and psychological symptoms, managing finances, dealing with health and welfare decisions, incontinence, and making difficult decisions towards the end of life.  Understanding the perspectives of those providing care to a parent with dementia – a relatively common, if not anticipated experience – may offer a lens on families and the business of caring more broadly. Damien Riggs and I have written a book about kinship that further examines these, and other, issues [3]. Our book Critical Kinship Studies was recently published by Palgrave Macmillan.

* These are not participants’ real names.

References

[1] O’Dwyer, S.T., Moyle, W., Zimmer-Gembeck, M. et al. (2016) Suicidal ideation in family carers of people with dementia. Aging & Mental Health, 20(2), 222-230.

[2] Erol, R., Brooker, D. & Peel, E.  (2016) The impact of dementia on women internationally: An integrative review. Health Care for Women International, 37(12), 1320-1341. Available: http://www.tandfonline.com/doi/full/10.1080/07399332.2016.1219357

[3] Riggs, D.W. & Peel, E. (2016) Critical Kinship Studies: An introduction to the field. London: Palgrave Macmillan. Available: http://www.palgrave.com/it/book/9781137505040

Now Published: ReValuing Care Edited Collection

We are delighted to announce the publication of our edited collection, ReValuing Care in Theory, Law and Policy: Cycles and Connections, edited by Rosie Harding, Ruth Fletcher and Chris Beasley. This collection is the main academic outcome of the AHRC-funded ReValuing Care Network. The network, that was funded from 2012-2014 facilitated the development of new interdisciplinary connections between academics from across the social sciences and humanities with interests in legal and political responses to the challenges of care.

Over the next few weeks, we will be posting blogs from some of the collection’s contributors, outlining the main arguments in their chapters. In the meantime, the introductory chapter is available to view for free on the Routledge website:
https://www.routledge.com/ReValuing-Care-in-Theory-Law-and-Policy-Cycles-and-Connections/Harding-Fletcher-Beasley/p/book/9781138943193

Book Cover for ReValuing Care in Theory, Law and Policy

ReValuing Care in Theory, Law and Policy: Cycles and Connections

Care is central to life, and yet is all too often undervalued, taken for granted, and hidden from view. This collection of fourteen substantive and highly innovative essays, along with its insightful introduction, seeks to explore the different dimensions of care that shape social, legal and political contexts. It addresses these dimensions in four key ways. First, the contributions expand contemporary theoretical understandings of the value of care, by reflecting upon established conceptual approaches (such as the ‘ethics of care’) and developing new ways of using and understanding this concept. Second, the chapters draw on a wide range of methods, from doctrinal scholarship through ethnographic, empirical and biographical research methodologies. Third, the book enlarges the usual subjects of care research, by expanding its analysis beyond the more typical focus on familial interconnection to include professional care contexts, care by strangers and care for and about animals. Finally, the collection draws on contributions from academics working in Europe and Australia, across law, anthropology, gender studies, politics, psychology and sociology. By highlighting the points of connection and tension between these diverse international and disciplinary perspectives, this book outlines a new and nuanced approach to care, exploring contemporary understandings of care across law, the social sciences and humanities.

 

Dementia, women and sexuality: How the intersection of ageing, gender and sexuality magnify dementia concerns among lesbian and bisexual women

The journal Dementia has just published a paper I have written, ‘Dementia, women and sexuality: How the intersection of ageing, gender and sexuality magnify dementia concerns among lesbian and bisexual women.’  The key points in the paper are as follows:

1. Lesbian, bisexual and heterosexual women are differently impacted by dementia and dementia services.
2. Heteronormative and heterosexist community and residential care provision can compound the difficulties experienced by lesbian and bisexual women living with dementia, in ways which do not affect heterosexual-identifying women with dementia.
3. Those women most likely to require community and residential care provision for individuals with dementia – lesbians and bisexual women – are least likely to have their identities recognised and supported.
4. This may be contrary to Equality and Human Rights legislation and UK social policies.

This is a very important issue, as yet un-addressed by policy-makers, service providers and advocacy organisations. Please spread the word far and wide to raise awareness!

If anyone would like a copy please email me.

Sue Westwood

When Caring Goes Wrong: Rehoming Unowned Dogs

By Marie Fox

Those of us who share our lives with dogs know that interspecies relationships are an important and mutually enriching basis for caring practices, yet it is also evident that dogs are often victims of a complete lack of care. These extremes of care are vividly captured in the contrast between the casual cruelty of the 27 year old trainee solicitor sentenced to 18 weeks in prison last month for leaving her boxer dog to starve in a locked kitchen, and the tenacity with which homeless people cling to their relationship with their dogs notwithstanding the difficulties this may pose to them in finding a home. Paradoxical attitudes also characterise media responses to dogs. At the same time that television programmes celebrate The Wonder of Dogs, newspaper reports disproportionately depict dogs as out of control weapons or feral killers. In a familiar litany of reporting of dog attacks on humans, common features are a focus on breed, a desire to impose responsibility and a failure to address the root causes of our problematic relationship with dogs. Over the last few months this is evident in accounts in February 2014 of dog attacks in Blackburn, where an eleven month old girl, Ava-Jane Corless, was savaged as she slept in her bed by an American pit bull type dog owned by her mother’s boyfriend, in Carmarthenshire where Eliza-Mae Mullane, a six day old girl, died having being pulled from her pram and bitten by her family’s Alaskan Malamute who had been acquired from someone in a pub, and in Lincolnshire where in March another pit bull type attacked a 22 year old woman walking near an old quarry.

Malamutes and bull breeds figure disproportionately amongst the sheer numbers of unwanted dogs that are stretching the resources of local authorities, charities and dog rescues. The 2013 Annual Stray Dogs Survey by Dogs Trust reveals that 111,986 stray and abandoned dogs were picked up across the UK over the last 12 months, equating to 307 stray dogs being found every day. Many are bull breeds, victims of a process of media stereotyping fuelled by the 1991 Dangerous Dogs Act which in categorising pit bull terriers as dangerous dogs, has served to make all bull breeds perversely attractive to the wrong sort of owner. One particularly tragic case highlights the potential for well intentioned and caring actions to go wrong in the world of dog rescue. In November 2013 four year old Lexi Branson died after being mauled by her family’s dog Mulan. According to newspaper reports Lexi’s mother, Jody Hudson, fatally stabbed the dog in a frantic attempt to save her daughter when he attacked her on the floor of the lounge in their flat. It transpired that Mulan was an American bulldog type who had been adopted by Lexi’s mother in August 2013 from a Leicestershire rehoming centre. The rehoming reportedly took place after she had seen a picture of the dog in the rehoming section of the rescue’s facebook page. A friend of Ms Hudson reported that the dog had a soft nature and that Ms Hudson had been told he was safe around children. The rescue declined to comment. In the absence of all the facts it is important not to judge actions, as anyone involved in dog rescue will testify.

I volunteer with one of the many small dog rescues struggling to cope with Britain’s unwanted dogs. We work closely with a local authority pound in the North West of England to provide emergency kennel space for dogs who have not been reclaimed, rehomed or offered a rescue space within seven days. At this point they can lawfully be humanely destroyed under s 149 Environmental Protection Act 1990. A key aim of organisations like ours is to place our dogs with bigger and better resourced rescues. However, typically, due to their fear of being overrun with too many unwanted breeds, it falls to smaller rescues to rehome bull breeds – mostly Staffordshire Bull Terrier crosses. We homecheck for our dogs as carefully as possible, requiring prospective owners to complete forms, submit to a home visit, visit the dog in kennels and ensure that dogs are neutered and vaccinated prior to rehoming while dogs are not placed in a home with children under 10 years old. However a consequence of such conditions is that we lose out on good potential homes and in many cases prospective adopters will simply buy a puppy or adopt from a rescue too stretched to impose such conditions. And notwithstanding the care taken and great joy of waving a dog off to a new home, the process is inevitably accompanied with apprehension that things may go wrong, given the difficulties of adequately assessing dogs in a kennel environment.

However in the absence of the full story in most of these cases there are nevertheless a number of conclusions we can draw about media reporting and the reaction it has provoked which serve to highlight our flawed thinking about dogs. Initial media reports of the Branson case pictured Lexi with her uncle’s Dogue de Bordeaux who was erroneously deemed responsible for the attack and wrongly described as a French mastiff. The upshot was that breed specific rescues were reported in dogworld as having been inundated with calls from concerned owners wishing to give up their dogs. When pictures of Mulan were published, the immediate response of bull dog rescues was to deny that Mulan was a ‘British bulldog’, with an editorial in dogworld opining that “After some initial confusion, the dog responsible for this incident is now referred to as a bulldog even though it bears little resemblance to the pedigree Bulldogs bred in this country.” Such responses strike me as reflecting the manifold failures of social attitudes including UK law which casts dogs as disposable commodities and indiscriminately stigmatises certain dogs purely on the basis of their morphology or breed type. Media narratives which reify this focus on breed, and implicitly criticise the irresponsibility of a mother in choosing to allow into her home a dog of uncertain pedigree and origin, or rescues which somehow failed in an ill-defined area, obscure the root causes of indiscriminate breeding which produces unhealthy or ill socialised puppies, dangerous dogs legislation which has compounded the problems of unwanted and often traumatised bull breeds and a legal strategy of ascribing responsibility for stray and unwanted dogs to local authorities which are already struggling to fulfill their core responsibilities and are ill equipped to cope with the complexities of dealing with stray and dangerous dogs. Against this backdrop blaming a mother for her caring action in adopting a dog in need of a home, a not for profit organization struggling to fill the gaps in state provision or even the dog himself is manifestly ill conceived. Until our outdated and paradoxical legal attitudes to dogs are tackled, tragedies such as these unfortunately seem unavoidable, however much well intentioned individuals and dog rescues strive to care.

Counting on Marilyn Waring: Valuing care, housework, subsistence production and Nature

by Margunn Bjørnholt

 In a recent blog-post Donatella Alessandrini discussed the ”Wages for housework” campaign, referring to its main activists, among them Selma James. It seems that, when struggling to solve the problem of valuation of care and subsistence work, there is much to learn by revisiting the work and good thinking of feminist pioneers decades ago. I have recently had the pleasure to revisit another pioneer, Marilyn Waring and her critique of the system of national accounts in Counting for nothing/If women counted, originally published in 1988.

With the late Professor Ailsa McKay, I have co-edited an anthology on the impact and resonance of Waring’s groundbreaking work a quarter- century later. The resulting collected volume, Counting on Marilyn Waring: New Advances in Feminist Economics, published by Demeter Press, Canada, March 2014, maps new advances in theories and practices in feminist economics and the valuation of women, care and nature since Marilyn Waring’s Counting for nothing. The breadth and range of topics and perspectives covered in the anthology highlights the impact and endurance of Waring’s work, in the shaping of the discipline of feminist economics and in influencing women’s lives across the globe. In the foreword to the collection Professor of economics Julie A. Nelson, University of Massachussetts, Boston, points out how Marilyn Waring’s If Women counted ”encouraged and influenced a wide range of work on ways, both numerical and otherwise, of valuing, preserving, and rewarding the work of care that sustains our lives”. At the same time, Waring’s original critique of the system of national accounts for ignoring the value of care and subsistence work is still sadly relevant. Despite the development of feminist economics as a field of academic research and activism over the past decades, economic policies are still informed by economic theory and models that ignore the value and importance of care and that of Nature. The book is a contribution to the continued struggle for valuing care as well as an attempt to bring the field forward.

The publication of the book sadly coincided with the death of my co-editor, Ailsa McKay, who passed away, far too early, at the age of 50, on 5.March. Ailsa was herself a pioneer in feminist economics. She was Professor of Economics at Glasgow Caledonian University, and a founding member of the Scottish Women’s Budget Group. She combined her role as a renown academic and a leading authority on gender budget analysis with a strong community involvement for change. She has had a lasting impact on the field of feminist economics and the struggle for valuing care.

As an irony of fate, illustrating the persistent and recurring devaluation of care and motherhood, our publisher, Demeter Press, now struggles to stay in business, after being denied a much needed and anticipated government publishing grant. The argument was that its focus on mothering and motherhood was a liability, and that it needed to broaden its focus. Demeter Press has just launched a fundraising campaign. Hopefully many will support the only publishing house dedicated to publishing on motherhood and mothering.

New Publication on Dementia Carers’ experiences of ‘the system’

maze

Carers of people living with dementia find ‘the system’ of dementia support to be a maze.

A new research article by Elizabeth Peel and Rosie Harding has been published ‘online first’ in Dementia: The International Journal of Social Research and Practice. ‘“It’s a huge maze, the system, it’s a terrible maze”: Dementia carers’ constructions of navigating health and social care services’ explores data from both the ‘Duties to Care’ and ‘Dementia Talking’ dementia projects to highlight the experiences of familial carers of people living with dementia in navigating the complex health and social care systems that provide support for people living with dementia.

Abstract: Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked ‘Duties to Care’ and ‘Dementia Talking’ projects, in this article we focus on British carers’ talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a ‘maze’; (2) services as overly limited – ‘beyond our remit’; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.

For more information, please contact either Professor Elizabeth Peel (e.peel@worc.ac.uk) or Dr Rosie Harding (r.j.harding@bham.ac.uk). The article can be accessed on the Dementia journal website or by contacting us.