Friday, May 15, 2015


I am honoured to be invited to give the Pamela Denoon lecture for 2015. Pamela was an active feminist in all her activities. With her significant involvement, the Women’s Electoral Lobby was very effective in Australia, and the same organisation was of major support and comfort to me in New Zealand in my parliamentary years. Pamela studied politics and sociology, read widely in feminist theory and was committed to issues of social justice. I have fashioned my address this evening to reflect Pamela’s passionate political work for equality for women.
Women have been the unpaid workers in households and families for millennia. As any of this work moved into the market, women occupied the gender stereotyped low paid positions which replaced the unpaid work. In the C21st globalisation of this significant labour sector has seen many of these positions occupied by ethnic and migrant workers.
In 2015 demographic projections challenge governments on how to cope with the increasing numbers of dependents and the elderly who need a range of assistance to survive. Armstrong (2013) for example describes Canadian long-term residential care interests as including governments at multiple levels, national and international level for-profit and not-for-profit organizations, professions, unions, and organized as well as unorganized workers, residents, families, and volunteers, community organizations, and other groups representing various publics. What options are there to change the dynamic of centuries old expectations of women taking on this unpaid family and household work and underpaid market equivalents? And what are the issues for female human rights and dignity?
I give this address coming from a personal experience of living and being in the so called ‘carer’ environment. For 14 months I managed the care, and cared for, my father, after melanoma roots invaded the nerve tunnels to the brain stem. He was in a rest home for his last 5 weeks. In this time he told me he had lost his sanity and his dignity. It’s an interesting word ‘dignity’. It is the most fundamental of human rights. Article 1 of the Universal declaration of Human Rights states that “All human beings are born free and equal in dignity and rights’. My father knew exactly what he meant when he lost his dignity.
For instance, when I insisted my Dad needed to be fed, they replied they did not want to undermine his independence. He had palsy, a swollen tongue, and had lost most of his capacity to swallow, and poured food down his front to his shoes when he tried to help himself. My Dad wanted his dignity, not his independence.
We may not have studied ‘dignity’ in philosophy or law classes, but I suggest we all know a loss of dignity when we see it or experience it. We expect to find dignity in the constitutions of Germany and South Africa given histories of Nazism and apartheid.
Philosophers such as Kant and Dworkin have contended that it is impossible to separate self-respect from respect for the importance of the lives of others. When I treat others with indignity, I am also debasing my own humanness. There have been criticisms – made of UN human rights Covenants in general – that the rights in law are individualistic, not collective or communitarian, and many indignities are aimed at peoples, communities, indigenous and cultural minorities. At the same time, dignity can’t be wrapped up in a rigid box of meaning, as human dignity applies to our individual lives in all their riot of difference. There must always be room for the application of the concept in policy directed towards strategic practical outcomes. Sometimes it does get to be tied down.
A major breakthrough in the human rights issues in the field of those being cared for, and those doing the caring, was made when Cheryl and Philip Hutchinson took on the Ministry of Health and Senior Citizens of British Columbia, in the Human Rights Commission of British Columbia. The case focussed on the validity of a Ministry policy which prohibited the hiring of family members by adults with disabilities, who qualified for and received Ministry funding to cover the cost of long term, in-home, care services.[1] The policy constituted a blanket prohibition against hiring family members and applied regardless of whether the funding arrangement involved direct payment to the individual, or was through a homemaker agency as an approved service provider.
Ms. Hutchinson was born with cerebral palsy, a condition which led to physical limitations in her childhood, and quadriplegia in her adult life. At the time of the case in 2004, Ms. Hutchinson required assistance in all aspects of daily living, including bathing, dressing, and toileting, transfers, mobility, and meal preparation. Ms. Hutchinson’s father, Phillip Hutchinson, had been her primary caregiver since she was 13 years old. In her view, her father was, and continued to be, her most appropriate caregiver and a major contributing factor to her success, accomplishments, and independence, in the face of her disability. In order to provide his daughter with the assistance she required, Mr. Hutchinson was forced to leave the workforce. The family had subsisted primarily on the limited funds available through social assistance since 1983. At the time of the hearing, Mr. Hutchinson was 71 years old and continued to be his daughter’s primary caregiver.
In 1998, Ms. Hutchinson was accepted as a client of the Choices in Supports for Independent Living, a Ministry-funded program that provided funds directly to qualified adults with disabilities, allowing them some discretion to hire their own caregivers. However, the Ministry policy prohibited Ms. Hutchinson from hiring her father to provide for her care using these CSIL funds.
Mr. Hutchinson did not wish to be his daughter’s sole support as he realized that he would not be able to do this work for his daughter forever and wanted her to be independent. He did however, wish to be able to be hired as one of his daughter’s support workers under the CSIL scheme.
Cheryl Hutchinson and Phillip Hutchinson both filed human rights complaints alleging that the Ministry’s policy prohibiting the hiring of family members under CSIL was discriminatory. Ms. Hutchinson alleged that the Ministry’s policy discriminated against her on the grounds of disability and family status contrary to s. 8 of the Code[2]. Mr. Hutchinson alleged that the Ministry’s policy discriminated against him on the basis of family status contrary to s. 13 of the Code in that it prohibited him from being hired by his daughter as her support caregiver, purely on the basis that he was her father.
The case was tightly constructed, so it could not be seen as a universal remedy for all family members who are subject to this sort of discrimination. The Complainants did not challenge the validity of a general prohibition against the hiring of family members. What was challenged was the blanket prohibition against the hiring of family members, without an assessment of the individual circumstances, under CSIL.
The Judgement is very instructive as to the part played by ‘loss of dignity’ in human rights cases. In Ms. Hutchinson’s case, the blanket policy against hiring family members had a significant adverse impact on her dignity given her high care needs and her difficulties in hiring and retaining appropriate support workers. The policy did not address her actual needs as a vulnerable person with a severe disability. On the one hand, it offered her the opportunity to choose her own caregiver and, on the other, it denied her the opportunity to hire her father, her most appropriate caregiver.
The Tribunal found that the blanket prohibition against hiring family members impacted most severely on those, like Ms. Hutchinson, who were severely disabled and required 24 hour care with all of the intimate activities of daily living. It concluded that Ms. Hutchinson had established a prima facie case of discrimination on the basis of disability, and found that the Ministry’s blanket prohibition against the hiring relatives offended the Code on the basis of family status. It found that Mr Hutchinson had been discriminated against in seeking employment with no consideration of Mr. Hutchinson’s qualifications or suitability to do the job, and that both Hutchinson’s had had their dignity violated.
In New Zealand a similar story has played out when a group of parents who were the 24/7 carers of adult children with disabilities and who were not paid for their work, complained to the Human Rights Commission. Atkinson’s case was won in the Equal Opportunities Tribunal, in the High Court, in the Court of Appeal – and then the National Government decided to ignore court rulings, to take away the right to recompense and introduced an ouster condition preventing any further challenges to the law on these grounds. This happened in a context where the 24/7 carers of those whose disability was the result of an accident, were entitled to be paid under the New Zealand Accident Compensation regime.
Are there further human rights issues for those responsible for the unpaid work with respect to 24/7 dependents?
Dignity was influencing my thinking when I was invited to work in a Commonwealth Secretariat team – Robert Carr, Anit Mukherjee and Meena Shivdas, on research on the 24/7 care givers of those with HIV and Aids in 11 Commonwealth countries. We purposively selected participants, including grandmothers, child carers, gay men, intravenous drug users, prisoners, rural and transgender persons as participants in our research in both developed and so – called developing member states of the Commonwealth.
Our work was undertaken in an economic climate where the strategy has been to discharge patients earlier from public care facilities. In many countries where HIV and Aids is of epidemic proportions and hospitals cannot cope, they have just sent all patients ‘home’. In making this policy choice, there is a presumption that there is a reserve army of unpaid labour available in the family or community to immediately resume responsibility for the discharged patient.
There are significant economic costs to the national budget in respect of the invisibility of unpaid household and community work. We know this from the growing number of national and other time use data sets, from surveys or pilot studies on unpaid work and health care, from decades of narrative captured in a wide range of social science literature, and from our own observations and experience. Insufficient or inadequate care at the onset of illness can exacerbate its severity, with costs incurred across sectors. This occurs from the loss of labour from the market sector, the loss or diminution of unpaid service, productive and reproductive activities either when the woman of the house is ill, or when she has to forego other daily household tasks to carry out the caring work, or when a child is removed from school to assist in unpaid work, with the known outcomes of longer term illness increasing the possibilities of poverty, poor nutrition or hunger, and a range of other vulnerabilities.
It is also important to remember that in addition to work directly related to assisting dependents, household work – the daily maintenance of well-being – must continue. Household access to water, hygienic practices, transportation, and a clean environment, along with the management and logistics of all expectations, are daily chores that cannot be neglected. When someone is gravely ill, needs don’t happen according to a daily timetable. The work is very complex and difficult and the list of things to do is very long.
I have a major issue with the use of the terms /care/, caregiver, or ‘care economy’ for all this unpaid work. These terms do not describe the management, logistics, administration, resource mobilization, transportation, food production (quite apart from preparation), coordination – that are necessary. So we have all this work as part of the management of ‘caring, then we have all the household work, then we have so called ‘care’ work. I have a colleague writing a case study in New Zealand, of a mother of a teenage girl with multiple complex, severe health issues. In the last 2 years, her mother has had to deal with 22 personnel from 18 years. Imagine that work – the forms, the phone calls, the frustration, the time …If the work would have to be done in institutions caring for dependent residents, then it has to be done in the household for a dependent. Every process in one is performed in microcosm in the other.
Let’s look at what this work involves from at least 2 perspectives of the so called developing and developed world.
The Commonwealth team decided we would use Amartya Sen’s capability approach and developed questions directly from the CEDAW, UNCRC, ICCPR and ICESCR instruments. So for example we asked: Did you feel you had any choice about becoming a care giver? Does anyone ever come to give you rest? How is your own health? Can you describe the meals you have during a day? Are you able to do any work outside the home? Are you able to go to community or political meetings? Etc.
Some of you may know that the Pamela Denoon Trust provides bursaries for young Papua New Guinea women to finish their schooling, so I have chosen one of the PNG participants as the voice responding to this question.
I am 46 years old. I have been a widow for over 10 years now. I cared for my eldest child, Betia, who was 24 years old when she died. My daughter was living at home with me when she got sick. I took her to the Barracks clinic which is about a mile from our house. They said she had malaria and pneumonia. It was only later I heard from others that she had HIV Aids. I took her to the Aids clinic. Many times she would get angry and cry and feel sad and depressed that people were talking about her, the gossip really affected her.
Whenever she was angry I would sit beside her and rub her back to calm her. I could not buy her the foods she wanted to eat because I didn’t have money. But I still tried to do what I could. Our ways of getting food was difficult. My sons were little boys when I took them out of school to help me. “You have to fish, go to the market and sell the fish, buy whatever food you can, buy what she would like, whatever she wants”. They were only young but they were trying to do the job of a man. Her brothers and sister were scared and at times they hated her.
She really wanted hot water or sometimes cold and then I would ask around and try to find some cold water for her. I alone washed her as no one was there to help me wash her or do anything else for her.
My own family turned away from us, no one came to help me with her. With three little children to look after as well, I could not afford to get sick. It was very hard to look after her. My water fetching, and means of earning an income through selling shell-fish and beads or shell necklaces stopped. My time was taken up with her – washing her, feeding her, washing her again and putting her to sleep.
I would go to the barracks clinic and ask for medicine. If they had none, I’d have to find money and go to the pharmacy to try and buy medicine. Medicine was expensive.
In caring for her I would help her around, I would dress her, lie her down, help her up. If she wanted to go to the toilet I would dig a hole beside the house and take her and help her to do her business and then I would bury it. I would take her outside and place a mat on the ground for her to sit on and then I would wash her. I didn’t only wash her in fresh water, sometimes I would take her down to the sea, wash her and then bring her to the house and wash her again in warm water. I would heat the water and massage her body then dress her in clean clothes. By this stage she was very weak. At that time I bought so many clothes from the second hand because she was soiling them and I wouldn’t have enough time to wash them and no one wanted to touch her clothes. We also had to collect water in containers from the barracks and that is a long way to walk. If we were lucky someone would be driving along the road and we would get a lift, if not we would walk the 1 mile or so. I would wash and dress her in the morning and then again at 10am, then in the afternoon. At night I would wash her again then dress her ready for her to sleep, so that her body was cool and clean.
I realized that during this time I was hungry all the time. I would ask for help but no one would help us. We didn’t see any counselors or anyone. I asked around but nothing came our way. When she died I sent message to my family to ask them to come and help me. Nobody came. I washed her and dressed her on my own and waited, a solitary figure beside her body. Only one lady came forward and with her help I lifted her body into the coffin.
After she died people from the Aids clinic came and did a workshop here and they asked me all sorts of questions about how I looked after her. Where were they when she was alive? Now that she was dead, they want to know everything!
One of the very clear findings from our research was that few carers had any human rights. They did not choose this work. They had no choice. They had no time to enjoy their ‘capabilities’. We argued for a finding of capability servitude as the experience of most of these carers.
What might be the equivalent in the West? (For much of this discussion I use the word ‘care’ as it reflects the words in statistical surveys, but as expressed earlier, I have major reservations about the term).
The UK Census 2001 was the first to include a question on health, disability and the provision of care. It showed that more than a million people were working more than 50 hours a week unpaid to care for family members, friends, neighbours or others because of long term physical or mental ill health or disability, or problems related to old age. In the UK, more than 175,000 children under 18 were acting as carers, including 13,000 children under 18 providing more than 50 hours of care a week. Of people aged 65 and over, more than 382,000 cared for 50 hours a week: less than a third were in good health themselves. Even in the 85+ group, 22,000 people were providing at least 50 hours of care a week. Doran et al (2003) commented that paid employees, rather than informal carers, would have been in contravention of the European Working Time Directive.
In 2010 the BBC surveyed more than 4,000 secondary school pupils and found that an ‘invisible army’ of 8% of those participants were working in their households as carers. This was considerably larger than the census figures, but academics who designed the questionnaire said the stigma of admitting some disabilities, and that children were the caregivers, meant there was always going to be under representation in the Census figures.[3] Indeed the figures in the 2007-8 Scottish Household survey showed 657,000 unpaid adult carers and up to 100,000 young carers. (The 2011 UK Census total for Scotland was 492,000, with 137,000 providing 50+ hours a week).
I was interested in the reflections of Young Carer’s in a project in Stirling, who appeared to have ‘capability’ issues[4] such as we found in the Commonwealth research: a lack of transport, lack of services, few if any shops with fresh produce to enable healthy eating, long school journeys, and few leisure activities.
I am especially interested in this as the Scottish Government is moving towards carer’s assessments, as well as assessments of those who use the services. I would hope that a capability assessment based on human rights might be a basic ingredient of these assessments. I am particularly interested in the new regulations which set out the circumstances where the supported person can employ a close relative as a personal assistant. These include where the person requires palliative care, where there are limited service providers and where there are religious or cultural beliefs. The range of appropriate circumstances does not seem to pass the Hutchinson test – being the best possible carer available and being the carer of choice for the patient, having both parties left with their dignity.
When we think of all the hours of unpaid work in what is the single largest sector in any economy, we know overwhelmingly women do this work. Can we think of any equivalent treatment of something men did for centuries unpaid? Yes – it was called slavery, and yes, there are a small number of men, some of them gay men caring for partners, who are among those doing this unpaid work, and in their cases they are often wearing the indignity of stigma, discrimination, and often where there are still criminal sanctions for homosexual men on the stature books.
But what about the human rights of those employed in the market doing front line caring work?
In early February 2015 the Guardian Weekly reported[5] that in the UK around 160,000 care workers out of 1.4 million were being paid less that the national minimum wage, each losing about 815 pounds a year. Overwhelmingly women and often migrants, the wage theft was mainly caused by employers not paying staff for time travelling between clients, despite a legal ruling it must count towards a care worker’s hours, as well as unpaid training and on call time. In a mirror image, the Employment Court in New Zealand in February 2015, ruled that 35,000 women workers in New Zealand have been systematically exploited, in a form of deliberate servitude, by being paid subsidies. Relief carers have not been paid even the minimum wage, not paid for travel time and in some cases have earned no more than $3 an hour for their relief care in the families of 24/7 carers.
In New Zealand other landmark cases have included the case for hourly pay for those on sleepover shifts at IHS homes, and a breakthrough ruling on equal pay. In October 2014 the New Zealand Court of Appeal ruled in favour of an aged- care worker, that the Equal Pay Act of 1972 meant that women have a right to be paid the same as men doing a different job if the work is comparable. The judges said the existence of entire industries that may be underpaid because they are female dominated was undoubtedly something of concern to the 1972 parliament.
But there remains a major difference between paid and unpaid work and its’ treatment. Firstly – in the UNSNA rules which determine the boundary of production for what does and does not count as work, the specific tasks I have been describing when carried out in the household are not counted as work, and are specifically excluded from the statistics used to determine the GDP. In economic theory, the unpaid work of caring, the ‘care economy’ illustrates the space which most challenges the dominant paradigm of the Chicago man busy self- actualising and acting in his own self –interest. The ‘care economy’ is a contradiction to this framing. The needs of the other come first and are the starting point for the carer, not maximising their own rational self- interest (Jochimsen (2003) p 239).
But when I was taking unpaid care of my father, is there a suggestion that I was more imbued with selfless motivations which would improve his quality of care, compared with the young male Filipina nurse who took over in the last 5 weeks, with more skills, experience, expertise and patience than I could ever muster. I would not wish to argue that the nurse’s only motivation was the market income he would receive, and it was my observation that ‘care’ was a professional characteristic that he practiced in all his waged work.
As part of my re-entry into the academic world after ‘caring’, I was able to attend a lecture given in Auckland by Sue Yeandle, from the Centre for International Research on Care, Labour and Equality at the University of Leeds. She spoke on the Reconciliation of Work and Care – Support to Worker Carers, outlining the UK experience of employer based approaches for those who retained their role in the paid labour force while needing to care for household members. She advised that 6.5 million people in the UK were now caring, with 516,000 in Scotland.
Sue advised that there was committed employer interests in carer’s and a group of Employers for Carers. The NGO Carer’s UK had valued this unpaid care work at £119 billion per year, exceeding the total cost of National Health and more than 4 times what local authorities spend on social services. Sue explained that the generalised replacement cost had been used in arriving at this estimate, and that the reason for this was it was the lowest cost from different estimation models. Sue described the Care Act 2014, which places a new duty on all English local authorities to plan sufficient care services, to enable carers to work, and to meet the assessed needs of eligible carers from 2015.
Sue then outlined the evolution of Employers for Carers. In 2002 Carers UK drew together an employer’s Interest Group, supported by the EU Action for Carers and Employment. The strategic interest was that carers risked falling out of employment. Carer’s had a “right to work” and access to employment.
The Carers Employment and Services study of 2007 showed that over 40% of carers were supporting someone where needs had not been assessed or where there was no support from any service. The demographic projections showed a potential for greater pressures on organisations with staff needing to be carers. In 2014, the Chairman of Employers for Carers and Managing Director of British Gas, Ian Petris, stated that “those people caring are likely to be your most experienced members of staff”. Sue explained that Carers UK’s Caring and Family Finances Inquiry 2014 showed that 70% of Carers were £10,000 or more per annum worse off as a result of their reduced earnings, ‘But hang on a moment’ I piped up. ‘That’s an opportunity cost figure, not a generalised replacement figure. So when the care economy is to be co -opted in the interests of employers, capital and the market, we use the highest replacement estimate?’ What is important in this version of the ‘care economy’, is what the market is missing out on, not the intangibles of care none of us can put a value on.
I know of only one major national initiative which has been introduced. Long-Term Care Insurance (LTCI) was implemented in South Korea on August 1st 2008, to reduce the burden of care on family members and to provide for a rapidly expanding older demographic. The South Korean Government faced a choice between the provision of services, and the payment of a benefit to those in need to purchase those service. A country wide feminist response from women was that elderly men would just spend any money on gambling, smoking, drinking and their social life, and women would still be expected to do the unpaid caring. ‘We won’t do it’ was the loud message for the government. Hence, LTCI was introduced.
Elderly recipients’ eligibility is dependent on the certification of LTCI. Based on their individual needs, care is then (mainly) delivered in kind according to the wishes of the client. The client has the freedom to choose their service provider. Long term care benefits consists of community based home care, institutional care and cash benefits.
Before the introduction of LTCI healthcare spending, welfare expenditure and pension spending were rapidly rising. Since LTCI has been meeting the needs of the elderly there has been a rise in LTCI spending. However, ‘healthy aging’ of the aging population has resulted in a decrease in healthcare spending, and a decrease in hospitalization for the elderly from 15.7 days to 11 days.
The increase in healthy elderly means more elderly are remaining in the working population and 95.8% of families of the elderly have reported that LTCI insurance has helped them participate in economic activity, all of which benefits tax revenue.
In comparison with other sectors where employment levels decreased or were stable because of the economic recession, Health and Social work, which includes the LTCI industry, were the exception. Workers at LTCI facilities have increased by more than 190,000. Increased workers in other sectors include more than 40,000 in the field of technological innovation and manufacturing in elder care support. That’s a very ‘economic’ transformation of the ‘care economy’. The sheer volume of work in this sector is increasing so rapidly many governments are just responding as the New Zealand government has: shut it down, say no, change the laws, keep it at home, we can’t afford it. It is a typically male Chicago man response, lacking in any imagination, good strategic design, a willingness to pay attention to a huge issue in a very large economic sector, when all engaged are counted. It is in all our interests to pay good attention – we are all heading there as carers or as those who will need care.
[1] Hutchinson v. B.C. (Min. of Health), 2004 BCHRT 58
[2] HUMAN RIGHTS CODE R.S.B.C. 1996, c. 210 (as amended)
[3] Rachel Williams The Guardian Tuesday November 16, 2010
[4] Which had been themes in our HIV and AIDs research referenced earlier
[5] Monday 9 February 2015
Dr. Marilyn Waring is an author, scholar, environmentalist and social justice activist. She was elected to the New Zealand parliament at the age of 23 and served three terms, chairing the Public Expenditure Committee from 1979-1984. Waring’s distinguished career includes acting as an advisor to numerous organisations not least the United Nations and in 2003 she was appointed to the Board of the Reserve Bank of New Zealand. She is the winner of numerous honours and awards including the Amnesty International New Zealand Human Right’s Defender Award and the New Zealand Institute of Economic Research Economics Award. In the 2014 anthology, Counting on Marilyn Waring; New Advances in Feminist Economics, 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.

Pamela Denoon Lecture – 2015 – Australia
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