Caring about P in the Court of Protection: the Re X scenario

by Jaime Lindsey, PhD Candidate and Teaching Associate at the University of Birmingham ( j.t.lindsey@bham.ac.uk)

In the recent Court of Appeal case, Re X [1], the judges’ obiter comments were certainly timely. The case concerned Deprivation of Liberty Safeguards (DOLS) cases under the Mental Capacity Act 2005 (MCA). The case itself turned on the question of whether P (the subject of the court proceedings) had to be a party to the proceedings in which they would potentially be deprived of their liberty. Whilst the Court of Appeal held that they did not have jurisdiction to hear the appeal, they made their feelings clear that P should always be a party to DOLS proceedings.[2]

Under the MCA, individuals can, in certain circumstances, be deprived of their liberty in a care home or hospital for the purpose of being given care or treatment.[3] Further, a person who may be deprived of their liberty outside of a hospital or care home, but still with sufficient degree of State involvement, would also require Court authorisation for the deprivation of liberty.[4] Many of us would expect that depriving a person of something so fundamental as their liberty should, at the very least, require them to have some input into the discussion. In fact, the ECtHR jurisprudence requires that a person who is to be deprived of their liberty should have access to a court and the opportunity to be heard.[5] This is not only important on an academic level; if a person who does not wish to be deprived of their liberty forcefully resists it, then the measures which need to be taken against them are surely an important factor for any court to consider before making an authorisation.

Yet this should not only be the case for removing somebody’s liberty. In my view, a more compassionate and inclusive approach should apply more broadly to the Court of Protection’s entire jurisdiction. In fact, new Court of Protection rules require the court to, at the very least, consider whether P should be required to participate in the proceedings and this is certainly a step in the right direction.

Involving P in the capacity question

As of 1st July 2015, the new Court of Protection (Amendment) Rules 2015 came into force. They require, amongst other things, that the Court considers whether it should make one of a number of directions relating to P’s participation in the proceedings (new Rule 3A Court of Protection Rules 2007). The possible directions it can make include: (1) joining P as a party (2) appointing a legal (or otherwise) representative for P (3) requiring P to address the judge (4) any alternative direction meeting the overriding objective. Whilst these rules certainly could have gone further, they show the Court’s increasing awareness of the greater need for P’s involvement.

Rule 3A is certainly an important step forward. It should ensure that judges and the parties are alive to the question of P’s involvement. Actually, involving P should be seen as a positive way to assist the Court in deciding whether he or she has capacity; a large part of the Court’s jurisdiction in health and welfare cases is about determining whether or not a person has the capacity to make a decision in the first place and this should not be forgotten. Clearly there will be cases where the capacity question is clear from the outset, for example consider the brain damaged adult on life support, but many more cases will be borderline and sometimes will involve adults who have no mental or learning disability at all.[6] Either way, to the extent that it is possible to do so and for capacity determinations at least, P should always be involved with proceedings.

A more inclusive approach?

The new rules should certainly go some way in achieving a more inclusive approach to decision making in the Court of Protection and are to be welcomed. However, the extent to which, and in what way, the options open to the Court will be used will need to be examined following implementation. A major factor in the increased involvement of P in proceedings will be the lawyers, social workers and carers who are involved in the case; if they see the benefit of involving P and argue in favour of this in court then is a judge really likely to refuse? Particularly in light of the obiter comments of the Court of Appeal in Re X, albeit that was in a slightly different context. In fact, the onus is not only on the judge in the case to consider this but it is also on the parties who can make an application to request such a direction. Those who know and work with P, and the lawyers on all sides, should be encouraged and feel empowered by recent developments to request P’s involvement.

The power of the Court of Protection in affecting the lives of individuals who fall under the MCA regime, both for the positive and negative, is enormous. In some ways, whether or not the outcome of the cases is any different as a result of the involvement of P is not the measure of success; what is vital is that people feel that their voice is heard, particularly in relation to decisions affecting their own lives. This empowers people to “buy in” to the ultimate decision that might be made on their behalf. That said, involving P in the decision making process will hopefully lead to better and more context sensitive decisions being made and the new rule 3A is a first step in achieving this.

[1] Re X [2015] EWCA Civ 599

[2]Ibid per Black LJ at para 108

[3] Pt1 s.1(2) MCA

[4]Under s.16(2)(a) MCA

[5]Winterwerp v The Netherlands [1979] 2 EHRR 387

[6] See for example IM v LM and AB [2014] EWCA Civ 37

Care Paid and Unpaid: Social, Economic and Human Rights Concerns

by Dr Joan Garvanwww.maternalhealthandwellbeing.com

Attempts to achieve gender equity have reached a new high water mark and the recognition and redistribution of care, both paid and unpaid, stands at the centre of this arena. The Australian secretariat – Economic Security 4 Women – have produced landmark reports, both scoping and quantifying the value of the ‘care economy’ and, more recently, Professor Marilyn Waring addressed the topic of care and dignity in the annual Pamela Denoon Lecture Series. Here below are key points from these papers and central messages made by Waring.

Two significant Australian reports on the care economy have been produced over recent years: Scoping the Australian Care Economy A Gender Perspective (2010) and Counting on Care Work in Australia (2012). These projects are concerned with the lifelong economic well-being of women. Though they are particular to Australia and reference local government policies, programs and strategies, they draw from an international body of research and deal with common concerns.

The first report references the importance of data collection and brings attention to landmark work in the Massachusetts case study that used United States Census and Time Use data to measure both paid and unpaid care work [1]. The author Valerie Adams notes tensions between unpaid work, voluntary work and paid work. She draws attention to the ‘relational’ nature of care work, and references the concept of ‘provisioning’ for human need. The report used the notion of ‘care work’ to depict both the paid and unpaid sectors. Adams considers definitions and current issues in the Australian care economy. She surveys relevant government policy and makes numerous recommendations for further research and data collection.

Counting on Care Work in Australia (2012) further develops this arena by quantifying the value of the paid and unpaid care sectors to the Australian economy. In 2009-10 twenty per cent of all paid employment in Australia was in the care sector. Care workers receive 96 cents for every dollar earned by the average Australian worker, and female workers earn on average 84 cents in the dollar to male care workers. The report valued the unpaid care sector at $650 billion with sixty per cent of this contribution being made by women aged 25 to 64. The report furthermore outlined and quantified government investment in the care sector. The authors make recommendations for further work in light of: demographic change; inter-generational concerns; and the continuing economic and life course implications for women.

Marilyn Waring prefaced her recent lecture Care and Dignity: Major challenges to economics and human rights (transcript and video available online: http://pameladenoonlecture.net/) with the proposition that over millennia care has been the primary responsibility of women. She has changed her emphasis since the publication of Counting for Nothing: What men value and what women are worth (1988) [2] and now frames these concerns within a Human Rights perspective.

Waring raised problems for the use of ‘care’ as an analytical category, arguing that most often carers are responsible for a myriad of associated tasks that could be lost through a continuing association with unpaid work. Nevertheless, drawing from studies from British Colombia, New Zealand, Papua New Guinea and the United Kingdom, she sets out a strident case whereby the human rights of care givers are being flouted. She and others set up a questionnaire for a Commonwealth report drawing from Amartya Sen’s capability approach to human rights which references choice, rest, health, meals, work and political involvement, and found multiple breeches.

With governments around the world withdrawing from social and welfare programs these kind of arguments are critical if we aren’t going to ‘throw the baby out with the bathwater’. Care, both paid and unpaid, are clearly significant to the health and well-being of the community, but further to this gender equality will remain allusive if we don’t see transformational change. Unfortunately the issues are complex and though there is increasing reference to the work of unpaid care in terms of achieving gender equity, there is a need to bolster and popularize the debates.

References

[1] Albelda, R., Duffy, M., Folbre, N. (2009), Counting on Care Work: Human Infrastructure in Massachusetts, University of Massachusetts, MA, Massachusetts

[2] In a recent anthology, Counting on Marilyn Waring: New Advances in Feminist Economics, edited by Margunn Bjornholt and Ailsa McKay, 31 authors from nine countries outline the wide ranging impact and resonance of Professor Waring’s work as well as the current frontiers of feminist economics.

 

 

Peripheral Thinking and Abortion Care

By Ruth Fletcher

‘Peripheral thinking’ seems to me to be one useful framework for identifying what states do when they respond to residents’ practices of travelling away for care.   States take a variety of actions when their residents cross borders for care; actions which produce, stigmatise, ease, regulate and represent that flow all at the same time pulling it in different directions. If we want to understand better the effects of those actions and perhaps even how to steer them, we need a way to differentiate between them while acknowledging the transnational space they occupy. Here I want to distinguish between three different kinds of peripheral thinking that inform such state actions – inverted, tangential and circular – in order to consider further how best to respond to the spaces for engagement that they open up. My reflections work out from the example of state actions and transnational care flow with which I’m most familiar, that of Irish state practices as they contribute to women’s outward flow for abortion care (Fletcher, 2013).

Inverted peripheral thinking

When states adopt law and policy that support travel for care whose provision is restricted at home, one kind of peripheral thinking they use to justify their actions takes an inverted form. They claim that the failure to provide the particular care at issue is actually evidence of a central role in international care provision and not a peripheral role.   In arguing that Ireland is an international leader in care for the ‘unborn’ and in maternity care more generally, the state has often represented its failure to care for pregnant women as a success. This is a familiar if crude form of thinking, which Barrett (1992), drawing on Marx, called the ‘camera obscura’ version of ideology.   The periphery represents itself as central to the delivery of care (to the ‘unborn’), with the effect of negating a peripheral role and obscuring failures in care delivery (to pregnant women).

Tangential peripheral thinking

But inverted peripheral thinking is not the only rationality that states use when they play a role in generating outward flows for abortion care. They may turn authoritarian in restricting or punishing travel for abortion care (Fletcher, 1998), but that is relatively rare. It is more usual for states that are peripheral to the provision of abortion care to end up accommodating use of that care to some extent because their residents compel them to. In the 1990s the Irish state famously compromised on its anti-abortion position by constitutionally recognizing freedoms to travel to and receive information about abortion care abroad. Since then the Crisis Pregnancy Programme has developed a network of predominantly pro-choice counselling agencies throughout the Republic of Ireland which provide free pregnancy counselling and post abortion check ups.

In a two-tier health system where many people pay fees to attend a general practitioner, the provision of free pre- and post- abortion care, with all its limits, is significant. In using regulatory techniques such as public funding, training and communication to normalize travel for abortion care, the Irish state demonstrates tangential peripheral thinking. Here the peripheral thinker does not want to become core as care provider, but instead approaches the core provision of abortion care sideways.   Peripheral thinking develops tangential connections with the core provider of abortion care by taking on activities which are a key part of abortion care, but are themselves on the periphery of that care, namely the provision of information, counseling and check ups. Tangential peripheral thinking then is conscious of being at a distance from core care provision, and does not want to become core. Rather tangential thinking connects periphery and core care providers by taking peripheral care activities, which are needed for the provision of core care, as the object of its attention and facilitation.

So far, civil society critics of Irish abortion policy have focused on the discriminatory and hypocritical aspects of this kind of tangential thinking (e.g. ARC, CRR, DfC, ICCL, IFPA, WHRA). Travel policy has discriminatory effects and is not an adequate means of the state meeting its public responsibilities, because the less mobile will be less well served. Abortion travel policy is hypocritical because it cedes its domestic anti-abortion moral stance and supports access to abortion on grounds that would not be legal within the territory. But these critiques can retain their truth while we also recognize that travel policy has some positive effects from a feminist perspective.

We can welcome the way that this public recognition of women’s use of abortion care has likely contributed in some way to increased tolerance of abortion.   Opinion polls now regularly reveal greater levels of support for abortion than the state is willing to entertain in domestic provision. Although, as in many other countries (e.g. Sanger, 2014), Irish women are far from feeling free to speak openly at will about their abortion experiences, there have been several initiatives which tackle the association of abortion with stigma in the public sphere (Enright, 2014). The state’s tangential peripheral thinking has opened up (and indeed arguably resulted from) spaces for feminists and pro-choice advocates to engage and push the state further towards recognizing and serving women’s needs.

Circular peripheral thinking

A third kind of peripheral thinking that we see in Irish abortion travel policy takes a circular form and argues that there is nothing the state can do to change its own practices. Here the state argues that its own rules, or the views of the people, prevent it from acting to cure some harm or wrong that it cedes is in contravention of international human rights norms. There was a particularly spectacular example of this kind of peripheral thinking evident in the state’s response to the UNHRC during Ireland’s review under the ICCPR in July 2014. The Minister for Justice and her staff faced hard-hitting criticism by the HRC members for the failure to protect women’s civil and political rights in relation to abortion but also more generally (e.g. Cahill, 2014).

Representatives of the Department of Justice responded by relying on Article 25 and the right to vote to say that past abortion referendums meant it could not do any more legally to bring Irish abortion law into conformity with the Covenant. As Enright tweeted during the hearings (I’m paraphrasing), “to recap, the Department of Justice has just argued that Parliament can vote to inflict inhuman and degrading treatment on women”. Much was made at the time of this failure of the state to recognize that this ‘tyranny of the majority’ type argument contradicted the whole premises of the state’s claimed commitment to human rights, and indeed HRC member Mr Shany asked the state party to withdraw the relevant statement.

But here the point I want to make is that this way of thinking is a circular denial of sovereign power to make and interpret law. This state is so embedded in the periphery of abortion care that it can’t even imagine the possibility of proposing a referendum which would liberalise abortion provision, rather than restrict it (see further Flinterman’s comments). A state which refuses to act in legislating for abortion care (except when forced to by the ECtHR in ABC) on the grounds that its own legal rules so prevent, or that the people would not tolerate such action, has a strange understanding of its own legal power and moral responsibility.

In representing itself as a passive effect of its own legal authority, the state adopts a circular form of peripheral thinking which renders it eternally peripheral to its own power in a spectacular act of legal misrecognition. Of course, the state could introduce a Bill to remove Article 40 3 3. It could decriminalize abortion. It could promote an interpretation of Article 40 3 3 that recognizes substantive differences between pregnant women and fetuses, and permits domestic abortion in a way that would likely reduce the outward flow. But it chooses not to.

Conclusion

States, particularly the Irish state, have actually been quite creative in responding to their residents’ practices of travelling abroad for care that is restricted at home. They have used a range of regulatory techniques that have effects on cross border care flows. In the case of law and policy on abortion-related flows, these different techniques present challenges and resources to those of us who wish to make abortion access easier. First of all, we need to throw our net more widely when we try to capture legal tools that have an effect on women’s abortion practices. The legal instruments which restrict women’s access on the territory of the nation-state are significant. Inverted peripheral thinking, which denies harms to women while celebrating care of the ‘unborn’ as a marker of international leadership, arguably takes care and international norms seriously, but requires redirection.

But as women’s cross-border abortion practices illustrate, norms of domestic restriction are not the only legal instruments that are significant. Regulatory measures that promote non-judgmental information and counselling and provide public funding do acknowledge extra-territorial abortion use and attempt to reduce harms to travelling women. Working with such tangential peripheral thinking may provide further opportunities to destigmatise abortion and promote a harm reduction framework. And finally, the kind of circular peripheral thinking, which sees the state deny its own power to have an impact on care flows, provides welcome opportunities for reminding the state that women are not the only ones who bear public responsibilities for care provision.

PS I wrote this before the news of the recent abortion refusal case broke.  My initial thoughts on that failure in abortion care are here: http://humanrights.ie/constitution-of-ireland/contesting-cruel-treatment-ruth-fletcher/

If you would like more information about civil society’s campaigning responses to this case and more generally please see: http://www.abortionrightscampaign.ie and https://www.facebook.com/pages/Speaking-of-Imelda/571659212932533

Comments welcome.

‘Who is Helping Who?’ – Co-Production and Professional Boundaries within Social Care services.

By Nick Andrews

I have been working in education and social care for thirty years, and have seen various new initiatives and buzz words come and go, whilst the fundamental principles of humanity remain the same. ‘Co-production’ in its truest senses is grounded in these principles. However, as with the concepts of ‘personalisation’ and ‘reablement’, there is a real danger that the term  ‘co-production’ is misused for hegemonic purposes to cover up what is essentially a cost cutting exercise. Under this scenario, individuals and their communities are expected to take on more responsibility for their own well-being whilst the machine of impersonal and ‘professionalised’ public services carries on as it always has done, albeit it with a few less staff employed. In my opinion, this would be a travesty and missed opportunity to restore warm humanity as the driving force for public services, not compliance with increasingly centralised and de-personalised processes and systems.

One of my favourite quotes by the theologian Martin Buber is ‘all real living is meeting’. Please note that Buber’s understanding of the term ‘meeting’ is much richer than the idea of putting a group of people together in a room or placing nurses and social workers in the same office, which is commonly assumed to result in integrated practice. I am sure many people will share my experience of being in meetings where no one actually met, where each person had their own agenda and the purpose of the meeting was to get this across – to win the argument.  For Buber, ‘meeting’ is about genuinely connecting with other people and being changed in some way by the process. In order to explain this process, he talks about two ways of relating to people and the world, which he calls ‘I-It’ and ‘I-Thou’.

In ‘I-it’ relationships, the person is detached and unaffected. In ‘I-Thou’ relationships, the person is attached and vulnerable. Tom Kitwood, in his seminal book ‘Dementia Reconsidered – The Person Comes First’ talks about his experience of seeing how people living with dementia were dehumanised through receiving emotionally detached task based care:

‘A man or woman could be given the most accurate diagnosis, subjected to the most thorough assessment, provided with a highly detailed care plan and given a place in the most pleasant of surroundings – without any meeting of the I-Thou kind ever having taken place’ (Kitwood, 1997)

By contrast, I believe that genuine co-production facilitates and nurtures the development of ‘I-Thou’ relationships between all parties, which in so doing begins to challenge the prevailing understanding of professionalism and professional boundaries.  In relation to this, I am currently co-ordinating a NISCHR and Joseph Rowntree Foundation (JRF) funded project in Wales, which is focused on the use of evidence from their ‘A Better Life – for older people with high support needs’ programme, along with other forms of evidence in social care service and workforce development.

The ‘A Better Life’ programme has identified that relationships are key and ‘Often it is the simple things that bring the most pleasure (and the lack of them can bring a sense of sadness and loss) and services do not always seem to be very good at delivering ‘the ordinary’’. (Blood, 2013 p13)

The research challenges also call for a different way of working, which is often alien to the world of emotionally detached and compliance focussed task based care, which is summed up nicely in the following quote by Edgar Cahn:

‘The world of helping others in need is now built around one-way transactions…. and with the best of intentions, one-way transactions often send two messages unintentionally. They say: “We have something you need – but you have nothing we need or want or value.”’  (Cahn, 2004).

In a series of recent focus groups and learning events involving older people, carers and frontline staff, I have been struck by how many people feel that current regulation and guidance is risk averse restrictive and at worst destructive of human relationships. For example, workforce regulation states ‘the inappropriate use of touch is not permissible’, rather than ‘the appropriate use of touch is fabulous and to be encouraged’. This is a particular issue for people living with dementia, who often have to express themselves and connect with others through feelings and emotions. Frontline staff talk have talked about feeling guilty when they do little kind things that are not written in the Care Plan or receiving small gifts of appreciation, older people have been ‘told off’ (in the name of health and safety) for pouring tea for others in day services, and carers have been made to feel that they no longer have a role when the person they love goes into a care home.

At the heart of co-production, is an understanding that everyone has something to contribute and that exchanging these contributions is enriching for everyone concerned.  I am reminded of the work of Jean Vanier, who established the L’Arche Communities in learning disability services. Vanier did not see his role as caring for people with learning difficulties, but rather sharing his life with them and being open to receive and learn from them as much as to offer them support.

I am reminded of one of my earliest experience of working in social care services. It was 1984 and I had started my first job as a residential support worker in a children’s home. I thought I was the ‘sorted one’ who was employed to help others. I worked hard to form good working relationships with staff and children in the home, but one boy, who had experienced a lot of hurt in his life, kept his emotional distance. As anyone who knows me well can tell you, I am not gifted in DIY or anything that involves fixing something mechanical. One day, I was trying to repair my bicycle (I did not drive at the time) and was getting nowhere fast. The boy walked past me and said ‘I’ve got a book about repairing bikes, do you want to borrow it?’. I am pleased to say that I took up his offer and our friendship took off from that day. He is now a happily married 43 years old who lives on the other side of the country, but we still keep in contact via Facebook and phone and offer each other support and encouragement whenever we can.

Jean Vanier once said, ‘I am struck by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes’. This is an important message for social care practitioners and agencies. We need to open our ears, our eyes and our hearts to the people we work with, which might involve sharing our vulnerabilities and concerns and allowing ourselves to be changed by genuinely ‘meeting’ with them in truly co-productive relationships.

 

References

Blood, I. A Better Life – Valuing Our Later Years, York, Joseph Rowntree Foundation, available at: http://www.jrf.org.uk/publications/better-life-valuing-our-later-years

Cahn, E. (2004), No more throw away people – the co-production imperative, Washington, Essential Books

‘Counting the Costs? Resources, Austerity and Older LGBT People’

The ‘Minding the Knowledge Gap’ ESRC funded seminar series held its fourth seminar at the University of Surrey last week. This seminar, called ‘Counting the Costs? Resources, Austerity and Older LGBT People’ addressed the material, financial and social resource implications of lesbian, gay, bisexual and trans (LGBT) ageing, particularly in times of austerity. It was well-attended by participants from a range of backgrounds: LGBT individuals (in all their diversity, including some in older age); advocates and activists; academics; social policy makers; and the police. There were two speakers. Dr Noah Uhrig, from the Institute for Social & Economic Research, University of Essex, gave a fascinating talk on ‘Poverty and Material Well-being of LGBT elders’, somehow managing to make some very complicated statistic not only accessible but also enjoyable. Audience members gazed in avid fascinating and still wanted more at the end. The second speaker, Dr Martin Mitchell, NatCen Social Research presented on ‘Not just “a nice thing to do”: Marginalisation and hardship for LGBT older people in the context of austerity cuts.’

Noah spoke of recent research project on poverty and sexual orientation (constrained by the usual problems with representative sampling of a ‘hidden population’) which suggested significant material differences in later life for LGB individuals compared with heterosexual individuals, and between one another. A key feature was the suggestion that older lesbians were materially advantaged compared with both older heterosexual individuals and older gay men. Noah’s data – which he bravely presented, anticipating the response it would meet – were, not surprisingly, hotly contested by many of the lesbian members of the audience. They found the idea of older lesbian material advantage counter-intuitive. Discussions raised issues of: women’s relative lower earnings to men; women’s greater representation in (lower paid) public services work, especially care work; women (including lesbians!) taking time out of work to have children, and to perform other informal unpaid care work (including for parents and grandchildren); women being much more likely to be in part-time paid work (rather than full-time work) while also performing unpaid informal care work (1). Noah acknowledged the tensions provoked by the data, and plans on conducting further analyses. We look forward to hearing more!

Martin then spoke of the double-edged sword of austerity cuts. Older LGBT individuals are more likely to need support from those public and voluntary sector services (health and social care, informal and formal social support) which are currently subjected to drastic cuts in funding (2). Those cuts in services impose increased pressures on an already pressured cluster of minoritised individuals, meaning they have a greater need for services, at the very time when there are fewer services available. Lack of material and social resources have profound implications for the well-being of older LGBT individuals (3) (4).

Afternoon discussions returned to the issue of gender (again unsurprisingly) and to the need to continuously unpack the ‘LGBT’ acronym (5), to appreciate how older lesbians, gay men, bisexual women and men, and trans individuals are particularly affected by the material and social resource implications of later life. The plight of the Opening Doors London project, supporting 1,000 older LGBT individuals in the London area, and which has lost all of its funding, highlighted the lived realities of the implications of austerity cuts. Towards the end of the day two distinct responses to resourcing projects for older LGBT in later life: the neoliberal model of private and national state engagement; a more localist, communitarian approach involving local LGBT groups and local government. It was mentioned that in Australia and some parts of the USA, older LGBT have been designated a ‘special needs group’ (with all the complications of such a categorization) and as such are eligible for state funding for local projects.

Much food for thought, and much work to be done, but all-in-all, it was a stimulating and thought-provoking day, made so by the contributions of all who attended.

(1)    Arber, Sara (2006) ‘Gender and Later Life: Change, Choice and Constraints’. In J. Vincent, C. Phillipson and M. Downs (eds) The Futures of Old Age, pp. 54-61,London: Sage.

(2)     King, Andrew (2013) ‘Prepare for Impact? Reflecting on Knowledge Exchange Work to Improve Services for Older LGBT People in Times of Austerity.’ Social Policy and Society / FirstView Article / November 2013, pp 1 – 13 DOI: 10.1017/S1474746413000523, Published online: 19 November 2013

(3)    Fredriksen-Goldsen, et al (2013a) ‘Physical and Mental Health of Transgender Older Adults: An At-Risk and Underserved Population.’ The Gerontologist doi: 10.1093/geront/gnt021First published online: March 27, 2013

(4)    Fredriksen-Goldsen, Karen I., et al. (2013b). ‘The physical and mental health of lesbian, gay male, and bisexual (LGB) older adults: the role of key health indicators and risk and protective factors.’  The Gerontologist, 53(4):664-675.

(5)    Ward, Richard, Rivers, Ian. and Sutherland, Mike (eds) (2012). Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support.  London: Jessica Kingsley

 

 

 

‘Listening to care’ by Arooj Khan

It has taken me three months to finish reading Yasmin Gunaratnam’s most recent publication, Death and the Migrant -a collection of accounts of transnational dying and palliative care in English cities. It wasn’t overly long or complex, nor was I lacking in the time to devote to its reading. It took me three months to read a hundred and sixty one pages because every time I encountered a narrative from a care practitioner or a dying person, I also found myself reflecting on the time that I have not spent listening to those around me.

I can honestly say I cannot remember the last time I gave someone the justice of letting them speak without me interjecting. As Prue Chamberlayne has shown in her discussion of using biographical narrative methods with ‘Laura’, the manager of a homeless hostel, there are often long biographical trails behind those who work in the caring professions that can affect their capacity for ‘emotional thinking’ and listening to difficult stories.

Let me give you some background about myself – when I was six years old, teachers became increasingly frustrated with me not ‘doing as I was told’ and not learning at the same pace as other children in my class. It turned out that I had glue ear (a condition where your inner ear becomes filled with fluid), which stunted my listening and learning capabilities. Ever since then I have made a subconscious effort to make up for lost time.

I am the talker, the socialiser, the comedian, the anecdotal storyteller. It is because of these traits that I have fallen into a caring profession. I work with vulnerable people who are homeless and I try to provide them with support to maintain their independence and help them to develop and/or refine their life skills.

I cannot remember the last time that I was with a homeless person and just let them speak and tell me their stories. Any information that I tend to know about them is generally gleaned from case notes or instrumental questions that will help me to deal with their current problems.  I couldn’t really tell you what their life has been like and from their own personal perspective. I don’t know how they felt at the height of their troubles or what their most memorable life events are. I can’t say that in all my years of working in the charity world I have been privy to any poignant childhood memories that I have helped to elicit.

In the support work field, we are part of a paradigm of holistic care, which means that services make a point of taking the ‘whole person’ into account before making a diagnosis of what support and care can be offered. Having read Death and the Migrant, it seems to me that it is narratives and stories that are missing from my profession. If I listened wholeheartedly, unabashedly and sincerely, perhaps I could provide truly holistic support to those I want to help. This is more than suggesting the value of incorporating narrative skills and knowledge into the development of a package of care, it is also thinking about listening to stories as care. Might skills in eliciting and listening to the stories of others reconfigure the balance of complex emotional relationships between the listener/professional and storyteller in ways that validate the vulnerable ‘other’?

Excuse the cliché, but perhaps it is time for me to sit down and let someone else do the talking…

Arooj Khan is the Mentoring and Befriending Project Coordinator for Housing Justice. She is a Goldsmiths College postgraduate student with an interest in service delivery models for homeless individuals. She can be contacted via LinkedIn or at Housing Justice, 256 Bermondsey Street, London, SE1 3UJ

Considering Age Relations in Research on Care

Rachel Barken

Concerns abound regarding the social, political, economic, and individual changes necessary to care for a growing population of older adults experiencing physical and cognitive decline.  These concerns are evident in academic scholarship, with a large body of research advancing theory and practice on caregiving and receiving in later life. Despite this focus on older adults, however, the ways age relations frame experiences of care are not clearly articulated. The concept of age relations, which owes much to the work of Toni Calasanti (e.g. Calasanti, 2003, 2006), considers the structured social relations that frame interactions among members of different age groups. Age is relational because one’s membership in an age group is defined in relation to other age groups, and because membership in these groups forms the basis for access to, or exclusion from, various rights and privileges. Inequalities among age groups intersect with other power relations associated with gender, class, and race/ethnicity. In this blog post I outline three ways theorizing age relations might move forward perspectives on later life care.

First, theorizing age relations helps to understand how care for older adults is conceptualized differently than care for people in other age groups. Feminists have long recognized that patriarchal conditions diminish the value of caring for ‘dependents,’ including children, disabled people, and older adults. But the devaluation of care work depends on the social status of those who are being cared for (Calasanti, 2006). The theory of age relations, with its emphasis on relational inequalities between and among members of different age groups, helps to explain why some forms of care are more highly valued than others. Because youth is regarded as a transitional status with such positive attributes as “ ‘hope’ or ‘future,’ ” (Calasanti, 2003, 208), childcare is often considered a generative task. By contrast care needs in later life are typically associated with physical decline, impairment, and weakness. These conditions present a permanent change in status and exclusion from previous activities rather than a temporary sick role from which one will emerge. Thus, older adults needing care are often viewed as a burden. The prevalence of debates regarding ways to minimize the economic and social costs of eldercare and the low status and of paid and unpaid caregiving for older adults are indicative of the inequalities among age groups that tend to disadvantage older adults and those caring for them.

Second, theorizing age relations brings into view the structured contexts that shape experiences of care. Social relations are structural in the sense that they frame people’s life course experiences and relationships with others. Theorizing age relations reminds us that the problems associated with later life cannot be solely attributed to physiological aging processes or to individual decisions made throughout the life course; rather, they emerge in socio-structural contexts.  For example common understandings and responses to age are embedded in policies guiding the distribution of pension incomes and spending on health and social care. These policies have a very real impact on older adults’ experiences of giving and receiving care.

Third, theorizing age relations gives insight on the intersecting relations of advantage and disadvantage—including class, age, gender, and race/ethnicity— that frame caregiving and receiving. These relations do not completely determine people’s life chances, but they do frame the contexts in which individuals act and interact (McMullin, 2000). An important difference between age relations and other forms of inequality is that aging is a universal experience. All people who live long enough to grow old will experience the marginalization associated with later life in an ageist society (Calasanti, 2003). The extent of this marginalization varies, though, as it intersects with class, gender, and race/ethnicity relations occurring throughout the life course. A framework that accounts for intersecting relations of inequality helps to explain, for example, older adults’ differential access to care and involvement in caring relationships.

Theorizing age relations has much to contribute to critical understandings of later life care. Debates regarding the relative influence of structure and agency, however, point to the potential limits of age relations. This concept recognizes that individuals hold the capacity to exert agency in the context of structured social relations, but primarily emphasizes the structural conditions that disadvantage older adults. This focus on disadvantage might inadvertently contribute to older people’s powerlessness. To avoid this risk, age relations must be theorized from the standpoint of older adults’ everyday, lived experiences (King, 2006). Theorizing age relations in research on older adults’ experiences of giving and receiving care can shed light on a private setting in which relations of dependency, power, and control between and among members of different age groups are worked out.

References:

Calasanti, T. M. (2003). Theorizing age relations. In S. Biggs, A. Lowenstein & J. Hendricks (Eds.), The need for theory: Critical approaches to social gerontology (pp. 199-218). Amityville, NY: Baywood.

Calasanti, T.M. (2006). Gender and old age: Lessons from spousal care. In T. M. Calasanti, & K. F. Slevin (Eds.), Age matters: Realigning feminist thinking (pp. 269-294). New York: Routledge.

King, N. (2006). The lengthening list of oppressions: Age relations and the feminist study of inequality. Age matters: Realigning feminist thinking (pp. 47-74). New York: Routledge.

McMullin, J. A. (2000). Diversity and the state of sociological aging theory. The Gerontologist, 40(5), 517-530.

 

 

 

 

Paid Housework? Wages for, Wages Against.

Lawyer and ex parliamentarian Giulia Bongiorno is proposing the introduction of a salary for women who do housework as a way of “changing the direction” of the domestic violence debate in Italy. The original impetus behind the initiative is the acknowledgement that for many women lack of economic independence remains an important factor affecting their decision to leave an abusive relationship. “Obviously”, the proposal adds, “the salary cannot be guaranteed to women only as victims of domestic violence… The issue is another one: it is necessary to rethink the housewife’s role tout court: it is necessary to gratify and not humiliate the woman who chooses to be one”.[1] Hence the proposal for a salary to be provided either by the state or, in the case of very affluent households, by the well-off partner. Beyond domestic violence, Bongiorno’s hope is that the economic and social recognition bestowed on housework will in time enable it to be become “gender-free”.

There is much to be said about the link made here between domestic violence and women’s “invisible” labour but I’d like to briefly reflect on another aspect of the proposal, that is the fact that while referring to the normative, jurisprudential and administrative recognition that housework has received in Italy in the past three decades, the proposal is silent about an apparently similar initiative. This is the Wages for Housework campaign of the 1970s, which Italian feminists promoted for over a decade and was in turn linked to similar campaigns in Britain and the United States. I said apparently because these are very different initiatives in terms of both the premise on which they are based and the arguments they make. The common point is the recognition of domestic labour as work but this is where the similarity ends.

For the Wages for Housework campaigners, this work was certainly not a woman’s “choice”: it corresponded to a particular division of labour under capitalism which separated the sphere of production from that of reproduction, assigning (capitalist) value to the former while considering the latter unproductive. Hence, the point was to make domestic labour visible and show how crucial it was to capitalist accumulation rather than celebrating it as a woman’s choice. As Federici (1975) put it

“To say that we want wages for housework is to expose the fact that housework is already money for capital, that capital has made and makes money out of our cooking, smiling, fucking. At the same time, it shows that we have cooked, smiled, fucked throughout the years not because it was easier for us than for anybody else, but because we did not have any other choice”.

The title of her essay, Wages Against Housework, conveyed the struggle that recognising this labour as work comported, that is the need to valorise it while subverting the processes that made it “work”, thus starting to address the separation between production and reproduction. Examples of such provocations included, in addition to the demand of wages for housework, the demand that social services be organised at community level while paid by the state so to retain control and autonomy over their nature and quality (Dalla Costa and James, 1972). One such demand in England took the form of community-run nurseries, the same communities which are currently been dismantled under austerity (Barbagallo and Beuret, 2012).

Thirty years later both Dalla Costa and Federici have reflected on the limits of the wage struggle as conducive to “women’s liberation”, while also dispelling the myth that “due to increased women’s employment, unpaid domestic work and gender based hierarchies have vanished”, pointing instead to the need for self-valorization initiatives outside the logic of the market and capital (Federici and Barbagallo, 2012). This is not to say that domestic and care labour should no longer be considered work. Indeed, as Selma James has recently pointed out ‘The refusal of feminists toˇacknowledge that work enabled Tony Blair to call mothers “workless” and made way for welfare reform’s definition of aˇgoodˇmother: she goes out to a job, even below the minimum wage, with whatever childcare she can afford’ (The Guardian, 7 March 2014). The point is rather to show how problematic it is to argue for wages for housework without a political perspective that sees it as part of a system of capital accumulation which is based on the separation between the productive and reproductive spheres.

At a very basic level, providing wages without confronting the isolation, repetition and relentlessness this labour comports (and therefore without affecting the underlying social relations) is likely to reinforce the view of housework as women’s work. And the suggestion in the proposal that the wealthy spouse pays for the housework carried out by the less well-off certainly points in this direction, not in that of housework becoming “gender free”. But at a time when austerity is squeezing the costs of social reproduction to the bare minimum, it is even more important we look at the ways in which the social reproductive field is being re-configured, particularly at the new division of reproductive labour worldwide and its relationship to the productive sphere. To argue that domestic and care labour is work means to acknowledge and trace the multifarious ways in which it contributes to making (capitalist) value. Arguing for the remuneration of such labour without challenging the basis on which it contributes to capitalist processes of valorisation is a very different kind of politics from that envisaged and practiced by Wages for Housework activists.

1 http://www.doppiadifesa.it/wp-content/uploads/2010/02/Proposta-_Stipendio-antiviolenza_.pdf

‘How can care be spiritual?’ by Dr Janice Clarke, Institute of Health and Society, University of Worcester.

It’s been noted that Revaluing Care bloggers haven’t had a lot to say about spiritual care  September 21, 2013 by Sue Westwood  so I thought I’d better step up to the plate. Nursing has tapped into the notion of spirituality because of the drive to be holistic; if nurses are supposed to look after the whole person, how could we overlook this essential bit.  Spirituality and spiritual care has been absorbed into the matrix of needs, problems and assessment which is how much of nursing is described.  Spiritual care is most often seen as the way to fill a perceived need in patients which is preventing them from achieving spiritual wellbeing and the ways most encouraged are by talking, or through putting in place something else, which could be anything from pain relief to a chaplain.

But if you ask most nurses what they think spiritual care is you’ll get some replies that don’t have anything to do with problem solving.  McSherry and Jamieson (2011) did this  and found that over 80% of more than 4000 nurses thought that they could provide spiritual care by showing concern, kindness and cheerfulness (this came second only to referral to a chaplain) but only 5.3% felt always able to meet their patients spiritual needs. So  why do they spend so much time not being cheerful, concerned and kind?  Of course the mismatch is because  although nurses interpret spiritual care as being about how they behave with patients, and how they ‘care’, they are taught, that spiritual care is about spiritual assessment and talking about spirituality and they don’t feel able and confident to engage do either (McSherry and Jamieson 2011). Similarly patients are more likely to say that they think spiritual care is about how a nurse is with them rather than how ably she is to ‘plan’ their spiritual care (Taylor and Mamier 2005).

This is where spiritual care and ‘care’ for me, converge.  Interestingly the literature about ‘care’ and the literature about ‘spiritual care’ don’t actually intersect which is another phenomenon to do with spiritual care which baffled me when I started on this trail. This was the area I set out to research for my doctorate and it grew into a whole book about how to do actual day to day ordinary care in a spiritual way (Clarke 2013). ‘Spiritual’ in this sense is about relating with compassion. The way spirituality is described in relation to health, is in terms of spiritual wellbeing which is about wholeness, fulfilment, identity, meaning, confirmation and feeling valued and loved. It seems to me that nurses can behave in a way that helps patients to feel this kind of spiritual wellbeing in all the ordinary things they do – or they can do the opposite.

This is why I’ve focused on how   professionals relate to patients and especially in how they provide physical personal care such as in bathing, moving and eating (Clarke 2013, see below).  If nurses can’t express spiritual care in how they relate in every ordinary encounter and task, how can we claim that spirituality is really at the heart of nursing?

Practicing spiritual care at mealtimes – from Spiritual Care in Everyday Nursing Practice: A New Approach (Clarke 2013, p.185)

Action  

  • Prior to the mealtime patients should be invited to choose the food they will eat.
  • Familiarise yourself with the assessments of the patients in your care
  • Invite people who might need assistance   to work out a plan for the help they need so that everyone knows what will happen when the food arrives.
  • There should be choices available which are compatible with the patients’ personal, cultural and religious needs.

Spiritual rationale

  • Empowers the patient and shows respect  for their personhood.
  • Shows competence and professionalism which expresses care and valuing of patients.
  • Empowering and shows you value their contribution.
  • Relieves the anxiety in patients of worrying if food will be okay and whether they will be able to eat it. So that patients can feel more relaxed and focus their energy on getting well.
  • Shows you are sensitive to their individuality and religious and cultural preferences, so recognising patients as full members of the community.

Action

  • Make patients comfortable and ready for eating. Give the chance to wash hands and face ready for eating.
  • Give the option of sitting away from their bed and with other people if possible.
  • Tidy the area around each patient removing urine bottles and wiping surfaces. Shows sensitivity to and respect for patient’s feelings.
  • Shows competence and attention to detail and so inspires trust
  • Shows how you value the eating experience.
  • Check the food is   appropriate, attractive, the right temperature and prepared so that each person can manage it.
  • Ensure it is what the patients ordered. Expresses care for the patient and shows that they are valuable enough for you to care if they are not enjoying the food.
  • Give help to each person individually without interruption.
  • Ensure the patient is not disturbed while they eat. Monitor what food is eaten and how patients  are managing where appropriate.

Spiritual Rationale

  • Expresses care for  patients’ needs and concern for their recovery.
  • Be prepared to be an advocate for patients to make complaints and make changes  if the food is unacceptable or the amount of help available  is not enough.

Action

  • Be imaginative and creative in finding better ways to manage mealtimes.

Spiritual rationale

  • Shows the patient that they matter and are valued.

References
Clarke, J. (2006) A discussion paper about ‘meaning’ in the nursing literature on spirituality: An interpretation of meaning as ‘ultimate concern’ using the work of Paul Tillich. International Journal of Nursing Studies, 43, 915-921.
Clarke, J. (2013) Spiritual Care in Everyday Nursing Practice: A New Approach. Basingstoke, Palgrave
McSherry, W., Jamieson, S. (2011) An online survey of nurses’ perceptions of spirituality and spiritual care. Journal of Clinical Nursing, 20(11/12), 1757-1767.
Taylor, E.J, Mamier, I. (2005) ‘Spiritual care nursing: what cancer patients and family caregivers want’, Journal of Advanced Nursing, 49(3), 260–267.
Swinton, J., Pattison, S. (2010) Moving beyond clarity: towards a thin, vague, and useful understanding of spiritualty in nursing care. Nursing Philosophy, 11, 226-237.