‘Care and Technology’ by Helen Carr

Last month I attended the 4S conference in San Diego, (the Society for Social Studies of Science in case you were wondering) along with about 1000 others.  Whilst I heard some good papers – I particularly enjoyed the panel on Calculating City Life: A Socio-Material Perspective to Low-Budget Urbanity which included papers on ride sharing and ecosan communities – I was struck, and disappointed, by the very limited focus on gender, sexuality and caring. The title (and what a great title) No Space for Old Women: Transformations in Healthcare Work was promising, but the presentation concerned women who had become nurses in the 70’s and who now felt edged out of the profession by the increasingly technological nature of their work. Interesting stuff, but, as far as I could tell, the feminism that was promised in the introduction to the paper, lay in the fact that the research subjects were women. This is perhaps unfair; when I read the full paper (and I promise I will) it may be more developed. I was amused though, when I asked the presenter to expand upon her feminist perspective, I was answered by a young man in the audience who told me it was self evident.  Women who entered work in the 1970s were all feminist pioneers apparently, since most women stayed at home and looked after their families.  It was hard to restrain myself from replying, ‘young man, I don’t think you are in a position to lecture me about feminism in the 1970s’ but I just about managed!

Many papers were concerned with surveillance, and the consequences of technology on our freedoms. Whilst these are important and topical concerns, there was a tendency to rehearse traditional liberal arguments, treating the state as one homogenous entity and technology as irredeemably bad. There was little deviation from this perspective, and I got the feeling that if someone said, well perhaps some communities want more surveillance, or technology can be a force for good, they would have been shouted down.  Moreover the panels were very gendered.  Young men, strutting their stuff, and congratulating themselves and each other on their (very similar) insights.  What a pleasure it was to hear Evelyn Ruppert from Goldsmiths introduce her empirical work on statisticians in the European Union and explain how people and institutions deploy ‘technologies of trust’ to give legitimacy to unstable and contested political projects such as the notion of Europe. Her ideas felt very productive to me.

Of course this is just a snap shot of the panels I went to.  It could just be that I made really poor choices (although I did comb the programme for references to care).  And I should probably have gone to ‘Feminist Postcolonial Science Studies: What are the Issues?’, chaired by Sandra Harding and Banu Subramaniam, but how could I resist a paper on baboons apparently making pets out of kidnapped feral dogs (for those of you interested here is the Youtube link http://www.youtube.com/watch?v=U2lSZPTa3ho – one million hits and rising!) which was on at the same time.  Just in case there is any doubt, as a result of that choice, as to my academic engagement, I would point out that I chose the paper on no-flush toilets over and above ‘Scotch Malt Whisky Tasting and Subjectivity Science in the Making: A Participatory Experiment’ where apparently the first 60 delegates got a whisky sample!

I reached two conclusions following the conference.  First, and this is a bit self-congratulatory, how much more productive was our workshop in Adelaide, when a wide range of papers were delivered, across our themes, and where the discussion was critical, constructive and engaged.  The workshop format really seems to work to develop shared intellectual capital in a positive and enjoyable way.

The second is to reflect on the contemporary importance of the relationship between care and technology which seems to be undertheorised.  I would suggest that once we start thinking about technology from the perspective of care, then the ambivalence of technology becomes apparent. Whilst I was in Adelaide, I had dinner with a woman who was originally from London. Her father was in a home in London and had a tendency to wander.  He was given a walking stick with a GPS tracing device, and she was able to follow his wanderings round London on her computer. Is technology in this instance increasing or decreasing her father’s autonomy, well being, dignity and privacy? What does it do to our understanding of family, and of rights and obligations? The invention of super-absorbent sheeting can be liberating, but can also be undignified and lead to a life isolated from human contact. Is it caring to be able to provide them to someone who is functionally, although not medically incontinent? Is technology absolving us of our responsibility to care? There is a huge amount to think about so it may be that the 4S conference would be a great place for our Revaluing Care network to squat, or at least to make its presence felt. So is anyone up for a panel or two in Buenos Aires August next year? Or perhaps more realistically at the European Association for the Study of Science and Technology in Torun Poland in September 2014?

Helen Carr, Reader in Law,

Kent Law School: http://www.kent.ac.uk/law/people/academic/Carr,_Helen.html

Care needs, gay men aged 60 and over

One of my research projects is to examine how a group of 25 gay men aged 60 and over have experienced or expect to experience old age. Interviewed as part of research I did for a book that Palgrave Macmillan published in 2013 (Gay Men’s Relationships Across the Life Course) the men were recruited in Auckland, London, Manchester, Melbourne, and New York. Six of them were in their 80s, nine were in their 70s and ten were in their 60s. This project builds on work that Brian Heaphy (2009), Ann Cronin and Andrew King (2012) among others, have already done in the area of queer ageing needs. It will also expand on my own findings from an all-Australian sample of gay men (n=80) that I used in The Changing World of Gay Men (Palgrave Macmillan, 2008) where I argued that I found little or no evidence to suggest that Australian gay men aged 60 and over were lonely in old age and that most seemed relatively optimistic about the prospect of growing old. What I did not examine, however, in The Changing World was the extent of their fears or concerns about life in care, which is the focus of the research I write about today.

Preliminary analysis of data from my international sample of 25 men suggests that they chiefly used two narratives when explaining what worried them about their care needs in old age. The first narrative related to that set of general fears and concerns that occupy the waking hours of many members of the general population as they age, namely fears about losing mobility or independence, having to live alone after the death of a partner, loss of sexual potency or interest, having to move into a nursing home, or the risk of dementia.

The second narrative the men drew on when explaining what worried them about old age were fears about heterosexism or homophobia. At the top of their list of worries was the heteronormativity they expected would exist in nursing homes or the homophobia of staff or other residents, either of which could have the effect of forcing some of the men back into the closet. One of the interviewees, a Sydney man aged 72 said the following about aged-care accommodation: ‘Nursing homes in Australia are often run by church organisations. Some church organisations, though not all, are not particularly welcoming to gay residents. They are not particularly understanding of the diversity of human relationships and of their needs’. A similar, related fear that men already living independently at home expressed was having to deal with care workers who were homophobic or uncooperative.

Cronin, Ann and Andrew King (2012) ‘Only Connect? Older lesbian, gay and Bisexual (LGB) social capital’ in Ageing and Society Available on CJO 2012  doi:10.1017/S0144686X12000955

Heaphy, Brian (2009) ‘The Storied, Complex Lives of Older GLBT Adults: Choice and its Limits in Older Lesbian and Gay Narratives of Relational Life’ in Journal of GLBT Family Studies, 5, 119–138.

Revaluing Care Workshop 2: September 2013, University of Adelaide, Australia.

At the beginning of September 2013 our Revaluing Care network had its second workshop, following an earlier workshop at Keele University, UK, in September 2012. This second meeting over two days at the University of Adelaide, in South Australia was marked by its attention to analytical concerns that had been raised in the 2012 session. It was also marked by much convivial discussion over food and wine at the end of each day.

We met in a room with views of the city all around us and, fortunately, the sun shone almost all of the time. What I recall most clearly was the very high standard of the papers, the sense of an extraordinary level of conversation within a group which has now forged a strong identity. The degree of confluence of ideas, of substantive and strongly supportive debate was striking. It is rare to attend such an event and feel constantly engaged by an extremely stimulating exchange of views. The event was both inclusive and demanding in the very best sense.

The workshop looked at a wide variety of existing services around care and their impacts on social interconnection (such as services around HIV/AIDs, young people and dementia care), as well as a range of existing legal and policy frameworks. This international orientation informed extensive discussion around new ways of conceiving care (for instance, in relation to social activism, migration and cross-national mobilities). However, it also enabled us to consider where the term care begins to fall away, or seems insufficiently recognised or activated. Consequently there was a significant interchange over the two days concerning the analytical and practical boundaries of care (for example, in relation to sexualities, diverse families, the notion of the human, marginalised services and public institutions seemingly distant from care including parliaments and courts).

These deliberations led to a range of theoretical and terminological discussions around the continuing usefulness of the notion of care, around what it covers and its limits.

The success of the workshop was not only evident in the strengthening of the network as an active, participatory and supportive research community, but also obvious in the final discussions around building research teams, projects and publications across the world and across disciplinary constraints. We aim as a result to produce articles, books of collected works, and grant applications. Many of these aims are now in process. The group was also firmly of the view that further workshops would be very worthwhile and assist in the development of these aims. So, watch this space.

In sum, I can only say that I, for one, gained immensely from the workshop and now have an even stronger sense of the considerable research capabilities of the group. This is a group with much to gain from our continuing association! It is one of the few research clusters that I have been involved in which shows ongoing promise of generating important intellectual exchanges and innovative new work .

Professor Chris Beasley

Discipline of Politics & International Studies (POLIS)
School of Politics and History
 
Co-Director, The Fay Gale Centre for Research on Gender

Intergenerational programmes and LGBT people

How can LGBT people of different age groups support each other? This is a key question that the ESRC seminar ‘Intergenerational issues and LGBT people’ held at Oxford on 9th September 2013 aimed to address. The seminar brought together around 40 people – including academics, policy-makers, service providers, third-sector organisations, and advocacy groups – among them younger and older LGBT people.

Older and younger LGBT people have grown up under vastly different socio-historical circumstances. The priorities of needs and concerns of different age groups would be different. Even within the ‘community’ itself, especially among gay men, the focus on youth means that ageism against older people can be rampant. At the same time, reverse ageism against younger people, characterizing younger people as shallow and worry-free, is not uncommon. All these can lead to an impression that younger and older people are marked by ‘differences’ and different generations of LGBT people are torn apart from each other.

However, it needs to be recognized there are similar difficulties both groups face. Despite the speed and extent to which society has progressed on LGBT issues, both older and younger LGBT people still face minority stress on a daily basis, which is related to a range of mental health issues, such as social isolation, discrimination and depression. Service providers, be they educational and employment providers in the case of younger LGBT people, or care homes or day care centres in the case of older LGBT people, still work on heteronormative assumptions. Staff in such settings generally remain ignorant and unaware of, if not hostile towards, LGBT issues.

The International Longevity Centre (ILC) thus argued the case for intergenerational projects as a way to bring older and younger LGBT people together. It was argued that the range of benefits can include:

•    Unifying a diverse community;
•    Reducing age stereotypes;
•    Development of social skills and confidence;
•    Development of practical skills;
•    Exposure of young LGBT people to older LGBT role models;
•    Improved understanding of the needs of older and younger LGBT people;
•    Preservation and increased awareness of LGBT history;
•    Sharing lifecourse experiences and providing social support. (ILC 2011: 5)

It has been repeatedly pointed out in previous posts (http://revaluingcare.net/older-peoples-day-including-older-lgbt-people/, http://revaluingcare.net/a-darker-side-to-care/ ), that older LGBT people can be particularly in need of formal care because they are less likely to have children and more likely to live alone than their heterosexual counterparts. On a point related to this, The ILC argued that intergenerational projects can provide older LGBT people with the opportunities ‘to develop informal relations with younger LGBT people that could ultimately lessen the need for heavy reliance on social care providers, or may help in negotiating relationships with these’ (ILC 2011: 10).

Of course this is not to say it is easy to bring different generations of LGBT people together. But if intergenerational projects could help to bring about a more caring LGBT community that is defined more by empathy and mutual understanding across age groups, how it can be done would deserve more discussions.

Reference:
International Longevity Centre (2011) Celebrating Intergenerational Diversity An evaluation of three projects working with younger and older Lesbian, Gay, Bisexual and Transgender people. http://www.ilcuk.org.uk/files/Report_1.pdf

Yiu Tung Suen is an Assistant Professor at the Department of Sociology of the Chinese University of Hong Kong (E-mail address: suenyiutung@cuhk.edu.hk).

‘Transnational families, migration and the circulation of care.’

By Loretta Baldassar & Laura Merla

Every day during his lunch break at around 1pm, Alberto, who lives in Perth, Australia, phones his 85 year old father, Angelo, who lives in Rome, Italy. Angelo, who is not in the best of health, is usually sitting at the kitchen table having his morning coffee and bread roll. “It’ll only be 6am in Italy, but Dad will always be waiting for my call,” Alberto explains. Since Alberto’s mother’s sudden and unexpected death a year ago, Alberto, an only child, has tried to manage his father’s increasing care needs from a distance. He took 6 weeks unpaid leave from work to travel to Italy to arrange the funeral for his mother and put in place care supports for his father. Both Alberto and Angelo see aged care facilities as a last resort option; they are expensive and have a social stigma that reflects badly on families. Angelo wishes to remain living in his own home for as long as he can. Moving to Australia is not an option because of Angelo’s failing health; furthermore, aged migration to Australia is costly with prohibitive requirements. Given the aged care regimes in both countries, father and son adopted the commonest solution and hired a domestic worker, Maria, to work from 9 to 5 each day, preparing lunch and dinner, doing the cleaning and shopping and taking Alberto to his medical visits. Maria has agreed to move into the spare room as a live-in carer if Angelo’s health deteriorates. A long-time family friend, Nadia, the daughter of Angelo’s old friend and neighbour, Nello, sets up a Skype every Sunday when she visits her father (who lives next door). Alberto feels this is the best way to “get a thorough update”.

Every Saturday and Sunday, at around 6am, Maria phones her 10 year old son, Diego, in the Dominican Republic. She arrived in Rome a year ago on a tourist visa. Maria planned to find work as a domestic and raise enough money to bring Diego to Italy. In the meantime, Diego lives with his grandmother Lucia, Maria’s mother. Twelve people currently live in Lucia’s crowded house, including her frail partner Arturo, two of Maria’s brothers, their partners and children, and Maria’s sister Anna’s three children. Anna is a domestic employee in the US. Maria and Anna call Lucia a few times a week to talk with and discuss their children, exchange support with their mother, and talk to other family members present at the time of their call. The two sisters are also in regular contact with their oldest sister, Teresa, who lives in Belgium with her Spanish husband and their three children, and the three women send monthly remittances to their mother. In spite of the distance, Teresa plays a central role in her extended family, and is considered by all as the head of the household that is stretched across thousands of kilometres and several countries. Teresa checks with her brothers and sisters-in-law that Arturo, who suffers from diabetes and has lost his sight, takes his medicines and eats properly, and sends emergency remittances when a specific need arises. She visits her family every year, and during these visits she works with her brothers on the renovation of the family house.

These case studies highlight the way family members from different socio-economic and cultural backgrounds care for each other through a process of asymmetrical reciprocal exchange, across and despite the distance that separates them, and the way that care circulates between them. The idea that care circulates within transnational family networks is indeed central our edited book entitled ‘Transnational families, migration and the circulation of care : understanding mobility and absence in family life’ (Routledge).

With increased mobility and improvements in both travel and communication technologies, more and more people are experiencing transnational family lives. The chapters that make up this volume cover a rich array of case studies including analyses of the inequalities between transnational families who circulate care between developing nations in Africa, Latin America and Asia to wealthier nations in North America, Europe and Australia. There are also examples of intra- and extra- European, Australian and North American migration and care circulation, which involve the mobility of both the unskilled and working class as well as the skilled middle and aspirational classes.

Whether pushed or pulled out of homelands in search of safe asylum, better economic futures or improved lifestyles, increasing numbers of people are separated from their family by distance and national borders. Those family members who ‘stay behind’ or ‘stay put’ (as it were) in their place of birth or ancestral homeland, also become part of social relationships stretched across time and place, even though they might never actually relocate or even move at all. We believe a focus on the disparate trajectories of care circulation helps us to better understand mobility and absence in family life, so that we might theorise transnational families as contemporary family forms in their own right. This book highlights, in particular, how the sense of belonging in transnational families is sustained by the reciprocal, though uneven, exchange of caregiving, in the form of financial, emotional and practical support, ‘hands on’ care as well as accommodation. By doing so, this volume challenges narrow definitions of care to consider the portability of care, a fundamental topic for our contemporary lives.

Sources:

Baldassar L. & Merla L. (Eds) (2013) Transnational Families, Migration and the Circulation of Care: Understanding mobility and absence in family life. Routledge, Transnationalism Series

Baldassar L., Kilkey M., Merla L. and Wilding R. (Forthcoming) ‘Transnational Families’. Revised Wiley-Blackwell Companion to the Sociology of Families.

c/o Professor Loretta Baldassar

Anthropology and Sociology
The University of Western Australia (M255)
35 Stirling Highway
CRAWLEY WA 6009
Australia

WeAreOne by Ambreena Manji

Who Cares?

And behind me I hear the footfalls of countless generations and ancestors. And around me the living community of my people, whose woes are my woes; whose moments of joy are mine.

Kofi Awoonor, Ghanaian poet murdered at Westgate, Nairobi on 21st September 2013

On 19th September 2013, at the Annual Lecture of the British Institute in Eastern Africa in Nairobi, Dr Ann Stewart delivered a lecture entitled ‘Caring about care: Recognising and regulating body work in a global market’. Based on her recently published book, Ann gave a compelling and wide ranging talk about forms of care and asked the question ‘who do we care about and how’? The discussions that followed the lecture were vibrant and engaged, the sorts of critical conversations about labour and about gender that I had hoped would come about in my time at the Institute.

On 21st September, at lunchtime, a terrorist siege began of an upmarket shopping mall in Nairobi, Westgate, a mile or two from the Institute. Everyone reading this will have seen the terrifying images. For well-off Kenyans who have become used to hearing the occasional distant grenade explode in the east of the city, in a crowded church or bar or bus station, the events mark a sea change. Here Kenya’s wealthy elite and the international community are the target and terror is at the heart of our lives. I’ve heard it said countless times this week that, looking at photographs of the attack taken in the mall, many of us recognised shop fronts, escalators, sweet stalls, even marble tiles on which we have trodden. As elsewhere, the mall is at once a response to, and a perpetuation of, a city segregated between the wealthy and the destitute. Reborn each day, sparkling clean, its shelves restocked with international branded goods, the Nairobi mall succeeds in making invisible the messy reality of life in a third world city. It would be deeply dishonest to deny that those who clean the mall, serve its meals, guard it – in short, those who provide us with our accustomed care and comfort – go unseen, unknown, unheeded.

Yet in the past three days we have heard stories of supermarket staff, faced with terrified customers running into the shop when the grenades and gunfire began, shepherding people into store rooms, barricading them in to conceal them from the attackers, hiding them behind boxes in stock rooms. Despite our own bleak assessment of ourselves as deeply divided along ethnic lines, as a society riven by long running racial divisions, in the terrifying and traumatic siege of Westgate mall many have commented on the intersecting unities we have discovered this week. An elderly Indian lady, recently returned home from England to care for her elderly mother in Nairobi, and desperate to do something to help, went down to the perimeters of the mall to serve tea and food to the police and media who have worked without a break for days. There she met an African woman who for many years has come to the mall everyday to sell tea and food to its cleaners, waitresses, guards. For the past three days, these two women have teamed up to cook and bring food to those working outside, plastic bags on the ground, car boot full of supplies wide open and elderly mother, still needing to be cared for, in the front seat watching them work.

But the events of the past three days have also made visible that which the well-off and the comfortable work so very hard not to see. The private security guard paid the minimum wage carried our children to safety through a pool of blood; the waitress whom we never greeted in three years of coffee drinking hid us in the cafe kitchen; the cleaner whom we never knew of ushered us to safety through a back exit.

This past three days, Ann’s question at the BIEA lecture – who do we care about – has been constantly in my mind. And as we slip back into our mutual distrust and distance, perhaps we might remember to ask, who cares about (and for) us?

Ambreena Manji

http://www.biea.ac.uk/director-professor-ambreena-manji/

 

 

Caring in Kenya, by Ann Stewart

While young men and possibly young women were laying siege to a shopping mall in Nairobi, killing young and old indiscriminately despite press reports to the contrary, I was spending the day with Maasai families experiencing care at first hand.  While they were forcing their way into this space where love and care was being bought in the same way as elsewhere in the global market place, through children’s cooking parties, coffee and tea drinking and the body work of hairdressers and cosmetic sales persons, I was sitting outside a one roomed home, made with corrugated iron sheets, drinking smoky milk tea from a pot on the open fire, with 4 generations of women from one family, the eldest 100 years old, the youngest 2 years.  The great grandmother was given her food by her grand- daughter.  She was sitting on her goat skin leaning against her hut wall eating her lunch from a bowl with a spoon.  The food had been provided by her last surviving child of 12, her youngest daughter in her 60s now living with her mother, having moved from the local ‘town’, some 8 kilometres away on a deeply pitted dirt road.  The ugali and goat meat with vegetables had been made into a stew on an open fire.  She spooned out all the liquid on to the earth in front of her because she wanted it dry.  Her daughter and grand- daughter looked on while she did this, ensuring that the food did not tip out.  When we had arrived in the sort of SUV which is ubiquitous in ‘developing’ world contexts with her grand- daughter and two great grand-daughters, she had come out to greet them but immediately went back inside the hut and come out again carrying all her belongings in a cloth bundle, secured on her head and back, which was almost her size, and her long stick.  She was intent on getting back to the town to visit her grand-daughter.  She was persuaded gently to put the bundle down and to have her food and to share tea and talk.   She was not going to be able to go back with us.  She and her widowed daughter had moved here because a grandson had taken responsibility for them.  Sons are important.  They provide this economic protection although widowed women are socially powerful within families.    We debated how we would leave when the time came.  The answer was for the men in the party to drive off in the vehicle and wait further off and for the women to stay behind.  Then at a moment when we hoped she was distracted we ran towards the vehicle.  She was not fooled and proceeded to follow us with remarkable swiftness for her age.  We clambered in and left her with her daughter to return to their home.

We were there because my Kenyan research student had studied the interaction between gender and ethnicity in matters relating to land in 3 different communities in Kenya.  The grand daughter was the sister of her interpreter for the Maasai field work.  Agnes had spent time much time and many experiences with this group of women who in Maasai terms are a wealthy and influential family, owning much land.  She was paying a visit to reminisce and to catch up on events.  I was sharing this visit as her teacher.  I also had a ‘husband’ my male partner with me.  Agnes had her husband and we had two male drivers, one for the Maasai area, an influential young man who had assisted Agnes with her fieldwork in this area, and a driver whom Agnes had used generally for all her fieldwork who drove for her family.  Undertaking fieldwork in rural Kenya is not easy.  It involves many challenges which I was only now learning about as we met up with those who had been involved.  Everyone was enjoying the stories. The interpreter’s sister, who set up many of the interviews, had been 8 months pregnant at one stage.  Her mother made it clear that Agnes must be prepared to attend the birth if this should occur on one trip which involved very bumpy terrain.   On one occasion the interpreter had had to climb a tree to try to get a mobile signal to enable someone to come and tow the vehicle out of the ditch.   The Maasai driver had been able to clear the road of a large herd of goats while the Kisii driver had not.  When the great grand- mother had been interviewed she had wanted Agnes to write down her entitlement to land on a piece of paper.  She still had this piece of paper.

I am deeply uneasy about the potential voyeurism involved in this type of narrative but it was not that sort of day.  The men in the party wandered off somewhere and the women chatted to each other lined up along the hut wall for a number of hours.  They spoke Swahili and the Maasai language and English when necessary.  I was made to feel completely welcome but not special.  I shared photos from my newly bought flash smart phone of my two small grandchildren.  They were struck by their very blue eyes.

A few days before I had delivered a public lecture entitled ‘caring about care; recognising and regulating body work in a global market’ at the British Institute in Eastern Africa.  It was based upon my book Gender, Law and Justice in a Global Market (CUP 2011).  As part of the presentation I had shown some photos of the elderly in institutional settings in the UK: older women lined up against walls in wheel chairs, heads down.  I had shown pictures of migrant care workers tending to these elderly frail people.  In the discussion which followed the presentation, we had had a very interesting discussion of the tensions and dilemmas that urban middle class/professional women face in coping with paid work and caring responsibilities in urban Nairobi where use of paid assistance in the home – domestic workers, nannies, care workers generally –are the norm.  We discussed the consequences of privatising social responsibilities with no welfare state safety net  – individual women feel responsible for the lot of other women who have left children and other family members behind to undertake these roles.  The women are not paid enough to replace their care and they may be far from their own homes in the informal settlements in Nairobi.  The Kenyan state has provided some legal protections and minimum wage requirements.  But how are these to be met by individual women with no support from the state?  Women are pitted against each other.

I looked after my mother and father in our home for the last two years of their lives.  My mum was by then very frail and needed constant care.  They both died aged over 90 in our home.  I recognised the care that the women around me were giving on Saturday.  I recognised its quality.  I recognised the power relationships, the negotiations, the vulnerabilities, the love.  I saw the dignity and worth of this very elderly woman’s life – her clean clothes, her neat hair, her alertness, her sense of being part of this community, her frustration at not being able to out run us to the vehicle.

Ann Stewart

School of Law University of Warwick

 

A Darker Side to Care..?

It’s been great to read the diverse blogs on this site and the definite slant given by commentaries on issues of identity and sexuality to the challenge of revaluing care. Some time ago I attended a meeting with some of the other members of this network where we raised the question of what is ‘queer care’. And more specifically, how could we go about finding out how it was practised and what it meant to people? We were interested in the lived realities of care for LGBT people but also whether queer theory could offer a framework for making sense of this experience.
Of the still very limited research on care in the context of LGBT ageing there is every indication that helping relationships are organised rather differently to traditional binary notions of the care-giver and care-receiver. For instance, Ann Cronin and Andy King’s work suggests interdependence over dependence in lesbian and gay relationships.  Research with the trans community by Sally Hines also points to support clusters and collective ways of helping people rather than dyadic carer/caree encounters. While Margrit Shildrick and Janet Price’s joint work on intercorporeality and their notion of ‘two bodies becoming together…’ sheds a very different light on how we think about the body itself and its potential in helping situations. However, the closeness and intimacy signalled by these accounts stand in contrast to findings regarding care for older LGBT people of the more formal/paid variety.
Here, care is an uneasy term, and comes with baggage. This is why it has been all but bracketed off in critical disability studies, with the intention that this may lead to more novel ways of thinking about the helping relationships that evolve between people. Perhaps then a queer approach could also usefully begin by treating care with caution –  after all there’s no saying that ‘revaluing care’ might not lead us to decide it is a less useful term for future understandings of helping relationships rather than necessarily investing it with new worth. Many LGBT people’s experiences invite such a possibility because so much of what is badged as care can be experienced as very negative and damaging. This can range from the wholesale neglect of the individual supposed to be ‘in care’ to a diverse range of sometimes more subtle indicators of disapproval, disgust or rejection communicated verbally, behaviourally, emotionally, viscerally etc. and all of which are enfolded within care practices. To date, these experiences are not well documented, partly because LGBT people in the ‘Fourth Age’ are largely invisible and ignored by mainstream gerontology, as Ann Cronin has pointed out, and often are too concerned for their safety to identify themselves in the context of relying upon care services. Do the assumptions that underpin how we currently think and talk about care serve to perpetuate the cultural silence about this darker side?
Taken collectively, research to date tells us that many LGBT people are afraid of a time when they might require care. Findings in the UK and US have uncovered significant numbers who would rather take their life than be admitted to a care home and many more who report a fear of care that involves body work and the prospect of being exposed to and handled by a care worker (although much of this research has been conducted with fit and independent people being asked to anticipate the need for care rather than describe the experience of it). Ironically, older LGBT people are more likely to require formal care by virtue of being less likely to have children and more likely to live alone, but evidence suggests many delay or refuse altogether the uptake of services due to anticipation of negative treatment and its impact upon their lives. At the very least then, formal care has a serious reputation problem in certain quarters. But research with older LGBT people also suggests it has a dark side – one that is perhaps most visible from certain (queer) standpoints. In our efforts to debate and revalue care maybe we should begin with the perspectives of those who have a close-up on the under-side of care and its darker recesses. And perhaps the place to start in ‘queering’ care is to dispense with the term altogether in an effort to find alternative ways of capturing helping relationships and reconfiguring the terrain of help and support in later life in ways that might feel more acceptable to minoritised groups…?

Key authorship on older LGB carers

Brotman, Shari, et al (2007) ‘Coming out to care: Caregivers of gay and lesbian seniors in Canada’, The Gerontologist, 47(4), pp. 490–503.

Conaghan Joanne and Grabham, Emily (2007) ‘Sexuality and the Citizen Carer’ Northern Ireland Legal Quarterly, 58: 325-341

Concannon, Liam (2009) ‘Developing Inclusive Health and Social Care Policies for Older LGB Citizens’, British Journal of Social Work, 39: 403-417.

Corden, Anne and Hirst , Michael (2011) ‘Partner care at the end-of-life : identity, language and characteristics’, Ageing & Society, 31:  217–242.

Cronin, Ann, et al (2011) ‘Categories and their consequences: Understanding and supporting the caring relationships of older lesbian, gay and bisexual people’, International Social Work 54(3): 421-435

Fenge, Lee-Ann, and Hicks, Christina (2011). “Hidden lives: the importance of recognising the needs and experiences of older lesbians and gay men within healthcare practice.” Diversity in Health and Care 8(3): 147-154.

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‘Older carers: invisible but invaluable’ by Antony Smith

  • There are 2.8 million people aged 50 and over providing unpaid care in the UK, including 5% of people aged 85 and over.
  • A quarter of all carers aged 75 and over provide 50 or more hours of informal care each week.
  • Carers save the UK economy an estimated £87 billion a year.

At Age UK we hear from many people in later life who are caring for a spouse, partner, relative or friend. Although many find caring rewarding and an expression of their relationship, carers also tell us that they feel invisible and undervalued. Many are stressed and exhausted. Here is an excerpt from one of those personal stories.

Jenny and James

“James and myself were both looking forward to spending our retirement together, but four months after I retired, James became ill and was diagnosed with memory loss caused by depression. Five months later he became ill again, almost overnight, and was hospitalised. He was 71.

“Eventually I was told, because James had Lewy Body dementia, I’d never be able to look after him and that he had to go into residential care. With a nursing background, I thought I could care for James at our home and believed this would be better for his mental wellbeing, but no one listened.

“Once a social worker was assigned to our case, he said he would try and enable a care package where James could live at home with me. However once our financial assessment was done, and we weren’t eligible for funding support, we were left to get on with things ourselves. I set about arranging a care package, but it was a complicated task to do with no guidance. Luckily, I’m able to use the internet, but I dread to think how I would have sorted anything without it.

“After nearly three months in hospital, James finally came home in Feb 2011.

“Being a carer is exhausting – from the moment James wakes up he needs help with everything from moving and getting dressed to washing and going to the toilet. When I don’t have night cover I’m up about four times a night and can’t sleep during the day as James needs someone with him all the time. Because we hired support workers independently we have the same ones nearly every time. I think that’s really beneficial to James, as changing faces can be particularly disorientating for someone with dementia and they perform very personal tasks.

“I take James to a day centre twice a week and this is welcome relief for me. Unfortunately we’ve just been informed that because of local authority funding cuts the centre will close next year. There are about 20 of us who use the centre, and James really enjoys his time there.

“Every six weeks I also put James in respite care for a week, to give me a complete break. Unfortunately on his most recent trip when I went to collect him he had no shoes on, his glasses were missing and he was wearing someone else’s clothes. I could tell he was frightened and he had bruises on his body. When I got him home I discovered he’d lost 8lbs in seven days. I’ve made a formal complaint and am waiting to discover the outcome, but things like that shouldn’t be acceptable and obviously I haven’t felt like I could put him in that respite home since.

“I feel I have managed to come to terms with my feelings of loss and bereavement concerning James, which were overwhelming at the start, and I just have to get on with things. I try not to think about the future. James is getting weaker, and I’m getting older so I don’t know how long I’ll be able to manage and I don’t know what will happen when our money runs out.”

Age UK Is calling for more support for older carers – from government, local authorities and health professionals – such as a Carer’s Allowance for pensioners, a choice of appropriate services and regular carers’ health checks. You can find out more about our work to highlight the support older carers need, as well as the recognition they richly deserve, on Age UK’s website.

Antony Smith is Development Officer for Equalities and Human Rights at Age UK Antony.Smith@ageuk.org.uk