Caring as a human right?
Luke Clements, Cerebra Professor of Law and director of the Centre for Health and Social Care Law, University of Cardiff, gave the inaugural Pauline Thompson memorial lecture at the Law Society last month. Pauline, who died in January this year, was co-author with Luke of LAG’s Community Care and the Law. She was, until 2011, on the editorial board of LAG’s Community Care Law Reports. This is an abridged version of the lecture. The full text is available at: www.lag.org.uk.
Stephen Knafler QC:
Ladies and gentlemen, colleagues, friends and family of Pauline, my name is Stephen Knafler and, on behalf of the Legal Action Group, I am very privileged to welcome you to the Pauline Thompson memorial lecture: ‘Caring as a human right?’ Professor Luke Clements will deliver that lecture in just a few minutes, but first I wanted to express, on behalf of Legal Action Group, our deep respect, admiration and love for Pauline and the valuable work that she undertook for many years.
For a barrister such as myself, one of the first things that springs to mind about Pauline’s work is Community Care and the Law, the community care practitioners’ authoritative, must-have book, on which Pauline and Luke collaborated in recent years. I personally have two copies, one at work and one at home quite close to my bed for when those nagging doubts arise in the middle of the night. When one imagines Luke’s voice or Pauline’s, saying some of the words in that book, those nagging doubts are immediately laid to rest. But Pauline’s joint authorship of that mighty tome is just one aspect of the important and influential figure that she became in the community care world.
In addition to the social work and advisory work that dominated Pauline’s early career, she also came to write the Paying for Care Handbook and the Disability Rights Handbook, was a dedicated, committed policy officer for Age Concern, joined the editorial board of the Community Care Law Reports some 17 years ago, when they first began, which is when I first got to know her and was a regular trainer for the Legal Action Group. How Pauline fitted all of this in with her singing, her bird-watching, her travelling and her photography and so on is a marvel, and I think the clue may lie in her seemingly inexhaustible supply of wonderful, positive energy. There is a particularly resonant passage in LAG’s obituary for Pauline:
Her persistence led to the revocation of the liable relative rule, which Pauline demonstrated had forced spouses into poverty. She was alert to any opportunity to make a difference; no consultation opportunities escaped her. For instance, Pauline worked determinedly to improve the NHS continuing healthcare framework and, as the lead for the Making Decisions Alliance, to influence the passage of the Mental Capacity Act 2005. She always knew what was going on, from case-law developments, through every policy initiative and ombudsman decision. Pauline networked like no one else; even from her hospice bed, she joked that she was networking to ensure that people from different parts of her life had got to know each other so that we wouldn’t be strangers at her memorial service.
Understandably, and quite rightly, Pauline was awarded the OBE in 2010 in recognition of her achievements. It is a tribute to Pauline’s qualities as a person and as a protagonist in the community care world that so many have made it here tonight, particularly with the threat of a lecture all about law to follow. Inevitably, not all who wish to come were able to, and I have been given just a couple of messages to read out.
Jane Campbell, Baroness Campbell of Surbiton, has written to say how sorry she is not to be able to attend the lecture. She sends her best wishes. She worked with Pauline during the early years of the Independent Living Fund and says that Pauline was a great inspiration, she’s sorely missed. Sally Greengross, Baroness Greengross, former Director General of Age Concern, has said: ‘Sadly I’m abroad but would have loved to have come. Pauline was a remarkable woman and this is a very fitting tribute to her work.’
Pauline will be greatly missed at the Legal Action Group and at the Community Care Law Reports just as much as elsewhere, not just for her seemingly inexhaustible supply of energy, know how and a willingness to help, but because she was so nice, so good humoured and so caring. In all the 17 years that I knew her, whilst her passionate commitment to the plight of vulnerable individuals always shone through, and I do mean always, I never once heard her say anything unkind even about the government, even about lawyers. She never talked down to anybody, even us lawyers, although the temptation must have been strong sometimes. She was learned, wise, good humoured and tolerant and I think that the title of Luke’s talk, ‘Caring as a human right?’, very much reflects the woman that I knew.
Luke and Pauline pictured at the reception to celebrate the launch of the fifth edition of their book Community Care and the Law. The event was also held to mark Pauline’s retirement as its co-author.
Her colleagues and friends at LAG will remember her as an inspiration, as a standard to be achieved and with abiding love for the rest of our lives. Thank you.
Luke Clements (abridged version):
Carers are the subject of my talk – specifically people caring on an unpaid basis for elderly, ill and disabled people – but in a wider context (and not addressed this evening) carers generally – carers of children and paid carers. In this talk I argue that carers will be the next group to acquire protected status: that their historic moment has come. This proposition raises many questions – which I will attempt to answer – not least the historical upheaval that is precipitating this belated recognition of their rights.
Is it really feasible to suggest that [carers] can expect to be the objects of human rights protection: that caring can be seen as a ‘universal human right’ and in any event what would be the benefit of such protection? There are many reasons why recognising the ‘right to care’ as a human right would make a practical difference. In the current discussion, it can be said that ‘universal human rights’ are one of the few forces that can withstand neoliberal demands – and this is of course why the mass media is, in general, so uniformly hostile to the human rights discourse.
Neoliberalism is obsessed with the ‘making a financial case’: the dominance and unbuckable nature of markets. One can, of course, make a very strong economic case for slavery and for the institutionalising of disabled people, but these options are not acceptable state policies since they would require a violation of fundamental human rights.
Where then would the right to care be located? Caring could be seen as the right to associate or, indeed, as a form of expression as the human touch is as close as we can get to direct expression. Most probably, however, the right is best located within the broad embrace of the right to private and family life (European Convention on Human Rights article 8, International Covenant on Civil and Political Rights article 17 and American Convention on Human Rights article 11). In the European context, this is particularly so given its expansive conceptualisation by the Strasbourg Court: embodying the notion of dignity and of non-interference by the state of an individual’s relations with other human beings – not treating people adversely because they choose to care or creating systems that condemn them to penury and ill-health (Botta v Italy (1998) 26 EHRR 241).
R (A and B) v East Sussex CC (No 2)  EWHC 167 (Admin); (2003) 6 CCLR 194 concerned the competing rights of carers and disabled people in the context of a manual handling dispute. In his analysis of the case, our national treasure (now) Lord Justice Munby observed:
If article 8 protects [the disabled persons’] physical and psychological integrity – and it plainly does – then equally article 8(2) must … protect their carers’ physical and psychological integrity. And if article 8 protects [the disabled persons’] dignity rights – and in my judgment it does – then equally article 8(2) must protect their carers’ dignity rights (para 118).
Article 8 of the European human rights convention was also held to be relevant in R (Bernard) v Enfield LBC  EWHC 2282 (Admin); (2002) 5 CCLR 577, where a local authority was held to have failed to take positive measures to enable the disabled person and her carer ‘to enjoy, so far as possible, a normal private and family life’ (para 32).
There are, in addition, many human rights provisions of direct applicability to the right to care and the rights of carers, for example:
•The obligation in … Convention on the Rights of Persons with Disabilities article 28(2)(c) that states provide support for persons with disabilities ‘and their families’.
•General Comment 5 of the Committee on Economic, Social and Cultural Rights (1994), which stresses the importance of financial support for ‘individuals (who are overwhelmingly female) who undertake the care of a person with disabilities’.
•General Comment 9 of the Committee on the Rights of the Child (2007), which stresses the need for the special care and assistance required by family members caring for disabled children.
•The obligations in the Convention on the Elimination of All Forms of Discrimination against Women on states to ‘enable parents to combine family obligations with work responsibilities and participation in public life’ (article 11(2)(c) and see article 16).
•The Council of Europe Recommendation Rec (2006)19 which calls for ‘the removal of barriers to positive parenting, whatever their origin’ and for employment policies that ‘allow a better reconciliation of family and working life’ (3(ii)).
Last year Magdalena Sepúlveda Carmona, the then UN General Assembly’s Special Rapporteur, filed a report ‘focusing on women caregivers’ in which she bemoaned the lack of attention paid by human rights advocates and monitoring bodies to the ‘human rights implications of unpaid care work’ (para 4).1Sixty-eighth session Item 69 (c) of the provisional agenda* Promotion and protection of human rights: human rights situations and reports of special rapporteurs and representatives. Extreme poverty and human rights, available at: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2437791.
If there was any doubt that caring could be a human rights issue, it is dispelled by this report stating as it does that ‘it is hard to think of a human right that is not potentially affected in some way by the unequal distribution and difficulty of unpaid care work’ (para 27). The report’s summary says: ‘the failure of states to adequately provide, fund, support and regulate care contradicts their human rights obligations, by creating and exacerbating inequalities and threatening women’s rights enjoyment’ (page 2).
The report addresses the issue of dependency and associative discrimination noting that ‘in many ways the rights of caregivers are symbiotically intertwined with the rights of care receivers: overburdening caregivers with unpaid care work has an impact on the quality of the care they are able to provide’ (para 11).
In the Special Rapporteur’s opinion, the consequence of states failing to ‘adequately regulate, fund or provide care’ is that the ‘burden shifts to families who have to make their own arrangements … this generally means that women assume the bulk of the work, to the detriment of their human rights enjoyment’ (para 8). The report requires states to construct their social welfare support systems in such a way that they ‘do not create significant inequalities between those who have an interrupted participation in the labour force — due for example to parenthood, care for older persons or persons with disabilities — and those who do not’ (para 87). It concludes by calling for states to consider ‘unpaid care work as a major human rights issue’ and, in particular, to take measures to ‘alleviate women’s poverty resulting from unpaid care work across their life cycle’ (para 109).
Carers are about as stretched as they can possibly be and neoliberal governments are very aware of this problem, particularly the ‘gender voting gap’. Put simply, over the last 20 years women (particularly younger women) are not tending to vote neoliberal, opting for parties that offer more (not less) ‘government’. US President Obama had a 56 per cent to 44 per cent lead over Mitt Romney in the 2012 election. In the UK, there is considerable evidence to suggest a similar gap, for example, a Guardian
/ICM poll in November 2013 suggested that Labour led among women voters 45 per cent to 26 per cent. What is quite clear is that the possibility of such a gap is something that politicians take seriously. In my research for Does your carer take sugar? Carers and human rights: the parallel struggles of disabled people and carers for equal treatment
, I reviewed the Cabinet papers from the first Margaret Thatcher administration, which were released under the 30-year rule, and these disclosed a near ‘obsession’ with addressing the needs of working women.2The Washington and Lee Journal of Civil Rights and Social Justice (2013) 19:2 p342. See: www.lukeclements.co.uk/whats-new/.
Neoliberalism has no answers to these questions … Until the system is radically reformed, all it can do is to obfuscate and offer opiates. The Care Act 2014 is a prime example. It is being implemented with indecent haste so it can be trumpeted as a ‘triumph for carers’ at the next election. It is not. It is a distraction.
I believe very firmly that we are now at a turning point: a point at which the pendulum is ready to swing in a different direction: a time when the dominant political discourse of the last 50 years is collapsing and that the pivotal reason for this is the state’s inability to deliver the basic human rights demands of carers.
Pauline Anne Thompson OBE 1950–2014
The following is an abridged version of the obituary that appeared in (2014) 17 CCLR March 2014
Legal Action Group and the editorial board of Community Care Law Reports record with great sadness the death of Pauline Thompson, on 13 January 2014 at the age of 63 after a long battle with cancer. Pauline was an active member of this editorial board from 1997 to 2014, and co-wrote the 4th and current (5th) editions of Community Care and the Law, with Luke Clements.
After many years in social work, Pauline moved into benefits advice in Bolton and acquired the most extraordinarily comprehensive knowledge and understanding of the intricacies of the system in general and of paying for care in particular. In 1996 she took up the post of policy officer for care finance with Age Concern (now Age UK) where she remained until her semi-retirement in 2010. A tireless campaigner for the rights of older people, Pauline had a directness of approach to everyone with whom she came into contact, combining formidable intelligence with thorough research, persistence and an eloquence peppered with wit. She was resolutely herself, never too deferential towards the ministers and civil servants whom she sought to persuade; a characteristic that contributed to her effectiveness as a campaigner.
Pauline’s tenacity was recognised by Baroness Greengross in her remarks in the House of Lords, and, to the great delight of her family Pauline was awarded an OBE for services to older people in 2010.
Pauline’s death is a personal sorrow for many of us, but she has made a unique and powerful contribution to the ongoing struggle for a better and more dignified life for older people living with disability and ill-health. Pauline leaves behind her mother, Margaret, sister and brother-in-law, niece and nephew and great nieces and nephews.
LAG is grateful to Stephen Knafler QC for paying tribute to Pauline on its behalf.
LAG would like to thank Luke Clements for delivering the lecture and the Law Society for co-hosting the event.