WUNRN
Pamela Denoon Lecture – 2015 – Australia
http://pameladenoonlecture.net/
Website Link Includes Video
Professor Marilyn Waring - In 2005
Marilyn Waring was nominated for the Nobel Peace Prize and she was recently
named as one of 50 women most likely to change the world. Waring has spent the
last 25 years working to empower women and men to challenge the priorities that
mainstream economists impose on them. She is a public policy researcher, well
known for her work on the value of unpaid care. Her book Counting for
Nothing: what men value and what women are worth has had worldwide
impact. Her extensive body of research is internationally respected, and spans
political economy, governance and public policy, gender analysis and human
rights.
CARE
& DIGNITY – MAJOR WOMEN’S CHALLENGES TO ECONOMICS & HUMAN RIGHTS
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.