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.
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.
WUNRN
Pamela Denoon Lecture – 2015 – Australia
Website Link Includes Video
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