Compassionate nevertheless – in praise of reluctant caregivers
Michael McCabe
Jesus said, “What do you think? A man had two sons. He went to the first and said, ‘Son, go and work today in the vineyard.’ His son answered, ‘certainly sir’, but did not go. He then went to the second son and said the same. But he answered, ‘I will not go.’ But later he thought better of it and went. Now which of these two did his father’s will? They answered, ‘the second son.’ (Matthew 21:28-32)
The parable of the two sons in Matthew’s gospel has similarities to the more familiar story in Luke’s gospel of the forgiving father. Although that parable is more commonly known as the story of the prodigal son, it is also a story about a reluctant caregiver – an older brother who stays at home, duty-bound to do the right thing, but completely consumed by anger and regret. In the Matthean parable the second son is up-front about his reluctance, “I will not go,” but does not let this fact preclude his helping out his father. Though reluctant, his presence makes a difference in the vineyard.
The reluctant caregiver referred to by Paula Span focuses her attention on the needs of her frail mother-in-law. There is a heroic quality about her care precisely because it is focused on the other rather than on the self. She may well be reluctant but she is actively involved in caring for her mother-in-law.
Contrast that with the jarring image of the retirement village resident who was dead for two weeks in his apartment before being found, or another man dead for a month in his housing complex all the while surrounded by neighbours. What might their story have been with the presence of a caregiver in their lives, even a reluctant one?
Illness and infirmity provides a backdrop where old wounds and unresolved conflicts return. These may or may not find a place of equipoise so that differences on many levels remain. Chronic illness, such as dementia or Alzheimer’s disease, not only destroys existing relationships but also possibilities for relationships that never existed or relationships that were defective and impoverished. Consequently, possibilities for mutual reconciliation become increasingly one-dimensional as the health of a family member slowly or radically diminishes. Even so, a focus on what is best for the patient can help find a way through this real sense of loss and disappointment, notwithstanding the pitfalls of paternalism or abandonment.
Much of ministry involves reaching out to the needs of the other from a position of having similar needs oneself. For example: the single woman at the heart of a parish or school community who is known for her wonderfully welcoming hospitality to the stranger or migrant, but who returns home to a lonely and solitary life; or the grandmother who spends her Sundays taking communion to the housebound and who has become an accepted part of these parishioners’ families even though she is denied access to her own grandchildren and has not seen them for several years; or the grandparents helping raise their grandchildren as well as caring for their own frail and aged parents. As one such person said to me recently, ‘when we got married 40 years ago this was not the retirement lifestyle we imagined we would one day be living!’
All of these caregivers, though reluctant to a greater or lesser degree, have the reach of compassion. This quality is easily lost, or at least under threat, when care of the vulnerable is commodified and commercialised or when communities and families become increasingly fragmented and isolated.
All caregivers minister out of their need and relational poverty but, by responding to real needs, they are helping to build communities of grounded faith and lived compassion. While they may well be reluctant and wounded healers, they are ministering nevertheless. To a greater or lesser degree the reluctant wounded caregiver dwells in every one of us highlighting our need to show gratitude for the wounded healers in our midst.
Simply put, all carers need to be reminded of the good that they do. Even when reluctant their kindness is a form of blessing, at a personal and communal level, as the late John O’ Donohue observes in his book Benedictus [2007:219]:
‘Perhaps we bless each other all the time, without even realizing it. When we show compassion or kindness to another, we are setting blessing in train. There is a way in which an act of kindness done becomes an independent luminous thing, a kind of jewel-box of light that might conceal itself for days or years until one day, when you are in desperate straits, you notice something on the floor at your feet. You reach for it and discover exactly the courage and vision for which you desperately hunger.’
Father Michael McCabe is Parish Priest of Our Lady of Kāpiti Parish, Te Whaea o Kāpiti.
The reluctant caregiver - a challenge for society
Anna Holmes
There is a paradox about caring – caring is supposed to arise out of compassion or a universal love of others but often is done out of a sense of duty. Paula Span writes well in “The Reluctant Caregiver” about care done out of duty not affection. Reluctant caregivers may be family, friends or neighbours as well as professional carers. Thanking a reluctant caregiver can make them feel ashamed because care is done from a sense of duty rather than compassion. I wonder if reluctant caregivers are compassionate and do not recognise it. Caring as a moral obligation can still be compassionate.
In New Zealand the numbers of those aged over 65 years will double to more than a quarter of the population over the next 50 years and the demand for caring will also increase. Technology will help with practical issues. There are already mobile apps that send messages to remind people to take their medications, or remind them to eat, or attend appointments. There are even small robots that can follow patients around and call for help when required. However, these cannot meet the human need for connection and community.
There are various cultural and social dynamics at work that are making the provision of compassionate care more difficult. When visiting a rest home recently I asked some of the residents what had changed in New Zealand society since their youth. They replied: “There’s been a loss of community.” “People are less caring now.” “It’s all the divorces and people living together so relationships don’t last.” “Families don’t live in the same place anymore.” “Our children are so busy with work and their families they haven’t time to see us.”
To these I would add the necessary increase in numbers of women working, the increased cost of education and training, smaller families and increased economic constraints around the help available to the frail. Regional health authorities reduce available funding for care in the community because funding complex technological medical care is seen as more important as it can be measured against ‘health targets’.
Over the past century, respect for the elderly has diminished in European societies. Various factors fuel a growing sense of ageism in these societies, particularly a shift towards individualism and materialism. Along with this is a lack of ethical reflection in policy. This results in older people being seen as consumers of goods without being contributors. It is as if the work, taxes, love and caring that they have contributed to society in the past has no value. It is not surprising that more elderly people consider themselves a burden.
As the number of elderly people increases, more New Zealanders who can afford it choose to live in retirement villages, which offer care at a price. They cannot provide the hope and connection of a multi-aged community and life often feels meaningless. They all too easily become ghettoes distanced from the rest of society. There is an urgent need to rediscover the place of elders as useful, contributing members of society. A number of recent studies have shown that volunteering and being connected are important factors in health and longevity. [1] The problem is how to connect a fragmented society into an organic whole.
It is ironical that ‘undeveloped’ societies are better at this. A Tanzanian woman, speaking to medical students said Tanzanian children have a duty to care for their parents, including sharing any money with them. The old are treated with great respect and honour for they are the living history of the people. They help where they can and are not seen as, and nor do they feel themselves to be, a burden. They carry the wisdom and tell the story of the community. This is also the traditional way kaumatua are regarded and treated in Maori communities.
In 48 years of medical practice I have seen far more compassionate caregivers than reluctant ones. There is a clear duty to ensure that any ‘reluctance’ caregivers experience is not exacerbated by a lack of physical, emotional, spiritual or economic support. As a start, how about a care giving allowance that is adequate to maintain family income?
As a society we have a responsibility to ensure the weakest and most needy have good care and support. If we fail to do this it will not be surprising that the elderly and frail feel they are an unwanted burden and might be tempted or coerced to seek death rather than life.
Dr Anna Holmes has recently completed a PhD on Embracing the paradox : Spirituality in General Practice . She is a Clinical Senior Lecturer, Department of General Practice, University of Otago. Over the past 48 years she has practised medicine in student health, rural practice, as a medical manager in the regional health authority, and in palliative care. Her experience includes work in a number of different cultures.
The reluctant caregiver
New York Times columnist Paula Span uses the term 'reluctant caregiver' to describe people who continue to care for someone even when they do it grudgingly. She concludes that reluctant caregivers probably deserve more credit than most, because they are not getting back the warmth, laughter, tenderness or sometimes even gratitude that others do, while they keep on doing the tough work.
Available online at: http://newoldage.blogs.nytimes.com/2013/02/20/the-reluctant-caregiver/?_r=0
Ethical challenges in advance care planning
A Submission to the National Ethics Advisory Committee
In New Zealand the National Ethics Advisory Committee (NEAC) has developed a draft consultation document exploring the ethical challenges in advance care planning encountered by health professionals. The intention of the consultation document was to further explore these challenges. The Nathaniel Centre responded with a submission to NEAC, which is summarised here.
For further information on advance care planning readers are invited to read the article "The Last Word: The Catholic case for advanced directives", in Issue 35 of The Nathaniel Report.
Introductory comments
We strongly support the broad concept of advance care planning understood as "a voluntary process of discussion and shared planning for future health care" (NEAC Draft for Consultation, p.2) . We acknowledge that healthcare professionals are an integral part of the process of creating an effective advance care plan, but we believe that the document takes an overly narrow approach to the issue by defining it as essentially a process "between a person and health professionals" (p.2).
We advocate a broader understanding of advanced care planning and wish that the long term New Zealand strategy encourage persons to reflect on decisions about care and treatment at the end of life before they become chronically ill. As Daniel Sulmasy notes: "There is almost a moral imperative for people, realising that they very well might die in a state of mental incapacity and aware that each is the judge of his or her own limits, to execute advance directives in order to assist those who will make decisions for them." At the same time we recognise that advance care plans are not a panacea for the complexity of end-of-life decisions.
The process of planning for future health care should not be limited to a discussion between a person and their key health professional. This assumption reflects a particular western cultural perspective which gives undue emphasis to the person as an autonomous rational individual rather than an interconnected and interdependent person who is part of a community. Secondly, even within this perspective, we believe it is not best practice to adopt a process that centres advance care planning primarily on the person and their health professional. This can foster a fragmented approach to the care of the person, resting on a narrow view of health to the exclusion of other dimensions of well-being. We advocate taking a more holistic approach that includes addressing cultural, family and religious or spiritual needs.
Feedback on draft consultation
The focus on the health professional reflects a too narrow view of health and well-being, and raises the potential for various conflicts of interest to arise. The health professional may exert significant influence over their patient and the direction that the planning takes; they are in a position of advising a person about the desirability or otherwise of refusing future treatments which they would otherwise be legally obliged to provide. They are, practically speaking, the 'gate-keepers' for precious and increasingly scarce health care resources.
The practicalities of facilitating a thorough and ongoing robust process of advance care planning: Doctors work under extreme time pressures and fatigue and stress could easily affect the quality of the planning process. A good process requires space and time and therefore adequate resourcing. Lack of resourcing becomes a serious ethical issue.
Involvement of family members or others in the process: There are times when people might need protection from their families' involvement. For a variety of reasons including their own feelings of inadequacy or an inability to provide care and support, family members might coerce the patient into a decision that they would not otherwise make. Aged Concern notes that 80 percent of elder abuse is carried out by families.
There is only minimal reference to New Zealand's multicultural population. The premise of the draft consultation reflects largely Western individualistic notions of decision making which may not be viewed as appropriate by some people. In cultures where individuals are viewed as enveloped in connections to their families, communities, land and ancestors, the advance care planning approach as laid out in the draft consultation offers very limited arrangements and may even be an alienating experience. This will require much broader consultation and reflection.
There are ethical issues generated by the confluence between personal choice and social and cultural context. All decisions are made in, and are shaped by, our context. In a society where the elderly are experiencing greater social isolation and where there is a view of the infirm and disabled as a 'burden' on family and society, a person's choice may reflect a societal notion that they have a moral responsibility to accept certain options, including limiting their care. This area also needs more reflection.
The draft consultation notes the assumption of competence in the Code of Health and Disability Services Consumer's Rights. However, because of the particular vulnerability of certain patients (such as children and adults who may have diminished competence) who wish to formulate an advance care plan, there needs to be additional provision to ensure the full participation in the decision-making process of those deemed to be of 'diminished competence' or 'not competent'.
We approve of advance care planning as "voluntary" but are concerned there is some evidence that such plans are being seen as a pre-requisite for acceptance into some aged care facilities (p.5). We strongly affirm the position that any decision by a person to decline to take part in care planning should not adversely affect the care and treatment they receive and that they should not be pressured or coerced into making or documenting advance decisions (p.7).
We agree with the document's concern about placing too much emphasis on the 'plan' itself rather than the 'process' of planning. This could unwittingly lead to a minimalist 'tick box approach' as recently evidenced in the United Kingdom with the Liverpool Care Pathway.
Advance care planning should be seen as an ongoing conversation and needs to be regularly reviewed and updated (p.4). The language used in this document and in promotional and educational material should reflect a focus on 'planning' rather than 'plans'. The terminology used needs greater consistency, clarity and precision.
Our preferred approach to advance care planning is that a proxy be nominated by the patient, someone who knows the patient's values and wishes and with whom they have discussed their wishes on a regular basis. This typically results in an oral plan, or a combination of oral and written. We also favour a less-specific form of plan as discussed in the draft consultation (p.4). A person's preferences change as they cannot foresee how they might react to a particular situation, and a particular health-related experience can re-shape desires and preferences about care and treatment.
We recognise the importance of health professionals being alerted to the existence of an advance care plan (p.11), whether written, oral or a combination, and the advance care planning process must take account of the fact that a plan may exist in any one of these forms. The existence of a plan on a data base must not become a substitute for ongoing discussion between the patient and/or family and health care team. An undue emphasis on gathering written advance care plans and storing them on a centralised database could militate against the need for flexibility and continuing review and discussion.
We think it is particularly important to reflect on how the process of advance care planning could be integrated with the legal provisions for appointing an Enduring Power of Attorney
Organ Donation: A strategy to implement advanced care planning that encourages persons to reflect on decisions about care and treatment before they become chronically ill provides an opportunity to prompt persons to reflect on their willingness, or otherwise, to become an organ donor. This may well assist in increasing the number of organ donations available.
Concluding Comments
We support encouraging persons to reflect on how their personal values shape the sort of care and treatment they want at the end of their life. We think it is critical that there is greater awareness of the context in which we live and which helps shape people's decisions and wishes. Without such reflection, advance care plans could unwittingly become a vehicle for imposing societal biases and prejudices about quality of life and the 'burdens of care' above authentic personal choice and the respect and care due to all persons by virtue of our dignity as humans.
We are concerned that the process of planning be broader than the person and their health professional and believe it is preferable for persons, having consulted with their health carers, to opt to give their loved ones or a significant 'other' substantial authority to interpret their wishes in whatever form they have been expressed. We advocate for health professionals to talk to a person who knows and has been selected by the patient rather than refer solely to paper or electronic records. However, the role of a 'proxy' also has its limits because patients frequently fail to discuss their preferences.
To conclude, we believe in a process that emphasises the ongoing nature of planning and review and that outlines specific directions rather than one that focuses on the completion of written plans that try to anticipate specific situations. This emphasis is also likely to be more inclusive of different cultural perspectives and values.
December 2013
Staff of The Nathaniel Centre
HIV/AIDS in Africa: Hope in the midst of tragedy
An Interview with one of the founders of Open Home Foundation International
The Open Home Foundation in New Zealand was started by a Wellington couple who were looking for a different way of helping children in need. Ewen and Gillian Laurenson set up the first small ministry in 1977 which aimed to provide support for children based on the idea that children fared best in families. Built on the promotion of 'families helping families', they became a national organisation in 1986 and their model of care has expanded throughout New Zealand. It is now one of the Ministry of Social Development's largest independent providers of social services for children and families (Troughton, 2013) with an emphasis on a child-centred and family-focused Christian approach.
After an invitation in 1991 to visit India and assist there, Ewen and Gillian started the Open Home Foundation International, which now works in India, Romania and Africa. The Nathaniel Report was pleased to be able to interview Ewen recently and asked him about the International Foundation's work in Africa with families and children who had been affected by HIV/AIDS.
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The Foundation was first invited to Uganda in 2000, and later to Zambia and Rwanda. The Foundation agreed that it would assist in these countries, by 'standing with them', but would not provide a New Zealand kind of service. Its work in Africa was to reflect the Foundation's vision, described by Ewen:
Every child, regardless of where they live, has the right to belong to a family and community where they are safe, loved, have enough to eat, that they can go to school, have access to health care and know they are loved by God.
In Ewen's words, the Foundation is non-denominational but is Christ-centred and prayer is at the heart of their work. While the basis of the Foundation's work is represented in its vision, the expression of its work differs from place to place depending on local circumstances. The invitation to be a partner in Africa came from a Ugandan pastor who saw the Open Home Foundation pamphlet at an Auckland church. He invited the Foundation to come and help with the enormous numbers of children who had been orphaned as a consequence of the deaths of their parents from AIDS.
HIV/AIDS has had a devastating impact on communities in Sub-Saharan Africa countries. The occurrence of the HIV virus in Uganda as well as other places was exacerbated by a number of local factors that led to appalling living situations for large numbers of families and especially for children. Polygamy was common and prior to the advent of cheap anti-retroviral drugs, once the husband had acquired the virus, all his wives would become infected. Upon the death of their parents, a common occurrence, children were often left to the care of an older brother or uncle, who was likely to have his own family to provide for. The children's care was often undertaken as an obligation, and the children "tolerated rather than loved". In these straitened circumstances there was little chance the children could attend school or receive adequate health care. The impact on families, and especially children, has had far reaching consequences for millions and will take generations to overcome: "A society suffering a profound unexpressed grief."
In 2012 there were 25 million people of this region living with HIV, of whom 2.9 million were children. There have been significant efforts to tackle the AIDS epidemic using a range of approaches, such as the ABC campaign, education about AIDS, the cheaper availability of anti-retroviral drugs and a global initiative (the United Nations Millennium Development Goal of 2000) to halt and begin to reverse the AIDS epidemic. The prevalence of HIV/AIDS in the three countries that the OHF first visited in 2000, Uganda, Rwanda and Zambia, shows that while there has been a concerted effort to reduce the rates of prevalence and to manage the disease, it remains a critical health and social issue.
While the number of new HIV infections continues to fall globally (declining by 50% across 26 countries between 2001 and 2012, and between 25% and 49% in an additional 17 countries ), HIV prevalence in Uganda has been rising since its lowest rate in 2006 , evidence that a degree of complacency has set in in some areas. In Zambia the prevalence rate of 13% (reported as being higher in urban areas) has not changed since the mid-nineties ; and in Rwanda, the relatively low prevalence rate of 2.9% masks the unequal impact of the disease as the prevalence rate for some of the most at risk groups is as high as 15% .
Overall the impact of HIV tends to fall unequally on women. For example, for Zambian women aged 15-24, the prevalence rate is twice that of men in this age group and in Uganda the prevalence rate for women is 5.4% compared with 2.4% for men. There are 170,000 children in Zambia estimated to be living with HIV and in 2009 there were 690,000 AIDS orphans3. In Uganda, in 2011, there were estimated to be 1.1 million children orphaned by the AIDS epidemic2, and in Rwanda in 2012 there were 120,000 AIDS orphans. The prevalence rates for women are higher for a number of reasons, including women's greater exposure to sexual violence, the refusal by their husbands or partners to use condoms, and the fact that women marry and become sexually active at younger ages than men, often marrying men who are older and may have already had a number of sexual partners.
Without doubt, the introduction of anti-retroviral drugs, and particularly the earlier access to and the reduced cost of treatment, has contributed to fewer AIDS-related deaths. These subsidised anti-retroviral drugs have meant that adults between the ages of 20 to 40 or more years, the 'provider generation' who had previously died or were incapacitated by HIV/AIDS, are not just surviving but are able to provide for their children. When the children are better supported and are freed from their caring roles, they are better able to access education.
Ewen's own experience of grief after his father died when he was 12 years of age, has enabled him to relate to the grief carried by these children, many of whom had lost both their parents and other close family and friends, as well as experiencing a 'loss of place' necessitated by a move to other areas. In the main, and in the absence of proper support, the children were simply expected to 'get on with it'. Their grief was often exacerbated by neglect, rejection and abuse and, for girls, by early sexual experiences not of their own making.
In the early 2000s, the focus of the Ugandan government's ABC (Abstinence, Be faithful, use a Condom) programme, was on the 'Abstinence and Be faithful' aspects, something that contributed to the drastic reduction of infection rates in Uganda when compared with other countries. Ewen, reflecting on how this approach conflicts with western notions of freedom, especially freedom of sexual expression, notes that many women, especially those who are victims of violence and rape, have limited control over their sexual relationships. Ewen has always been a strong supporter of the Abstinence and Be faithful approaches; they make sense in light of the evidence of reduced infection rates and have a particularly good chance in the places where Christianity is strong.
In addition, other measures have been introduced to resist the cultural forces which have exacerbated the HIV/Aids tragedy in Africa, particularly the domination of women by men . Ewen noted that girls are much less likely to be at risk if they are at school and being educated. He has also observed that 'women and girls are the cultural changers'; some education and a small amount of money can feed on their hope for a better life for their families. He believes that the education of girls is the key to lifting the family and community out of poverty. Meanwhile OHFI has conducted training seminars on the care and protection of young children, encouraging attendees to look beyond their own children, out to the needs of other children who are at risk.
In spite of the poverty and hardship suffered by the people of Uganda, Zambia and Rwanda, Ewen was constantly inspired by the expressions of hope there. He found the way the people expressed their love and hope through song exhilarating, and thought that their singing and their community orientation, as well as their openness to things of God were gifts they had that we had lost in New Zealand.
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In Rwanda the OHFI has partnered with a group called PHARP (Peacebuilding, Healing and Reconciliation Programme). PHARP members identify key women in a community, encourage the education of these women in a variety of life skills such as hygiene and diet, and assist them to develop small businesses. They also teach them about conflict resolution and reconciliation, focusing particularly on those who have previously harmed them. A number of the women had been grievously harmed by the genocide and the murder of some of their own families. As a consequence of the genocide, the rapes and the civil and political unrest for years afterwards, there are many orphaned, vulnerable children within every community.
PHARP asked if OHFI would come in and help them with training, talk to the people about the care and protection of children, and work with them to develop a programme for the children. They also asked if OHFI, working alongside local people, could help to develop a project that would create sufficient funds to support the schooling and health care for the children. As a result OHFI became involved with a community in Gicumbi.
The key contact they worked with there had lost his wife and children and forty members of his family to the genocide. He introduced Ewen to his small church where there were fifteen women who had HIV/AIDS, along with some of their children. Towards the end of the service another group of about fifteen women arrived from different churches. All were infected with HIV/AIDS and they came together once a week, spending some time together, praying, listening to one another, and providing support and encouragement to each other. Because of their impoverishment, none of the children was able to go to school or get the health care they needed.
Ewen described the scene in the church: "I always remember, these women stood and sang, actually they didn't just sing, they danced and sang. I asked for an interpreter, and it was really a song of love and hope and forgiveness and of a determination to make a better life as much as they were able to." Many of these women had contracted HIV/AIDS while being raped and had subsequently passed on the virus to their children. "So they'd been really traumatised. I was so taken by the suffering of these women, and yet by the faith and love and the hope that they were expressing." Afterwards, Ewen learned that they would love to be able to start a 'pig project' with the aim of breeding pigs.
When asked by the Wellington Cenacle Sisters for suggestions about a Christmas gift they could make, Ewen told them about the women of Gicumbi. The Sisters' then contributed to the purchase of eleven piglets – ten sows and a boar, and the OHFI undertook to pay a veterinarian to provide the local women with training in the care of the pigs. Subsequently 11 families were selected to receive the pigs; they were successful in caring for and breeding the pigs and handed on a quarter of each litter to another family.
The project was such a success that, when Ewen last visited, the group had grown to about 60 families, all owning pigs. Their children were all attending school and they were able to afford health care for their children, including the all-important anti-retroviral drugs which had been unaffordable before this project started. As this project has grown, again with money provided from New Zealand, the community has been able to purchase land, and they now plan to set up a communal piggery which will be used for the benefit of their more vulnerable children. Because of this project at least 200 children now have better lives and can look forward to a better future.
Eugenics in New Zealand
Hilary Stace
Eugenics is a pseudo-science concerned with improving the quality of the human race. It underpins the discrimination of those who are disabled or culturally or ethnically different by those who consider themselves to be morally and physically superior. Eugenists borrow the language and concepts of science, particularly evolutionary theory of ‘survival of the fittest’, to legitimise this discrimination. The flawed hypothesis underpinning eugenics is that some individuals, families and population groups are tainted with hereditary physical and intellectual defects causing consequent moral deficiency, making them less ‘fit’ than others.
Eugenic attitudes and public policy were particularly significant in the early decades of the twentieth century in many countries, including New Zealand. A common perception in Britain and much of the ‘western’ world at the beginning of the twentieth century was that evolutionary theory of 'survival of the fittest' had not caused society to rid itself of problems related to crime and poverty. Being part of the British Empire, it was not surprising that the eugenic debate here was influenced by the British one.
In the nineteenth century many migrants left Britain and Europe for a better life in New Zealand. Although infectious illness and accidents were common, disability was unwelcome as it conflicted with the ideals of a new society. Disability support was left to the benevolence of families or groups providing charitable aid. The immigration acts that restricted people from China (an ‘unfit race’) also banned ‘cripples, idiots, lunatics, infirm, blind, deaf and dumb’. The 1882 Imbecile Passengers Act required a bond from the person in charge of the ship before one of these ‘undesirables’ was discharged, and the 1899 Immigration Restriction Act went further banning the idiot, the insane and the contagious.
By the beginning of the 20th century the middle class white birth rate was dropping in New Zealand. The blossoming ‘scientific’ justification of eugenics was taken up by both white liberals and conservatives concerned about consequent fears of losing their moral supremacy. In 1903, W. A. Chapple, a Liberal MP in New Zealand and later in Britain, published an influential booklet, The fertility of the unfit. Sterilisation of the wives of ‘degenerate’ men was his preferred option for reducing the numbers of ‘the unfit’. His pamphlet was welcomed by many prominent men and women. Eugenics became a political cause. ‘Negative’ eugenists sought to limit fertility while ‘positive’ eugenists supported interventionist pro-natalist policies to increase population ‘fitness’.
The 'unfit' encompassed a whole range of 'other' including the following groups described in the language of the time: alcoholics, imbeciles, illegitimate children (and their mothers), prostitutes, criminals, the feeble-minded, lunatics, epileptics, deaf-mutes, the unemployable, the tubercular, the immoral (e.g. homosexuals), anyone from another race, those with incurable diseases such as Syphilis or tuberculosis, and even ‘mouth-breathers'. What they had in common was that they were all 'other' and were apparently breeding faster than the eugenists. Eugenists constructed a monster that gobbled up taxes, and provided images of the 'unfit' for people to measure themselves against.
French-born religious sister Suzanne Aubert had a personal experience of disability and was one of the few to speak out against eugenics in New Zealand. She founded her Home for Incurables in Wanganui in 1899 and, in 1907, opened her first Home of Compassion for all ‘needy’ or disabled adults and children in Wellington.
The 1907 founding of the Plunket Society with its slogan to 'help the mothers and save the babies’ both reflected and propagated eugenic fears about the ‘unfit’. 'The destiny of the race is in the hands of the mothers', wrote founder Truby King. He believed the body was a closed system with a limited amount of energy. The education of girls, in anything other than domestic skills, used up their energy and could make them unable to breed or breastfeed. From his observations of patients as Superintendent of Seacliff Asylum near Dunedin he believed mental degeneration was caused by poor mothering. If only women could be taught the 'science' of mothering the racial decline of the Empire could be arrested. Instead they would breed fit soldiers for the Empire. The less than perfect health of many soldiers enlisting in the First World War increased the Society’s influence.
The Plunket Society popularised the prescriptive ideology of a regime designed to build 'character'. It involved four hourly breast feeding (but not at night), toilet training from two weeks of age, fresh air, rest and no 'spoiling' as playing with or cuddling the child could weaken 'his' character.
But the Plunket Society was just one of many reactions by New Zealand society to those whose difference threatened the majority. Fear of the unfit and wishes to contain the disabled and undesirable had already led to New Zealand’s first public ‘lunatic’ asylum in Karori in 1854. A larger one on the hills above the town of Porirua opened in 1887 and by 1896 its site covered 100 acres. Typically for the time, the Porirua asylum mixed several categories of ‘other’: those with mental health issues, intellectual impairment, alcoholics, elderly and homeless people. For decades, these ‘inmates’ provided large captive communities for doctors and specialists to practice theories and interventions.
Some groups, such as those with vision and hearing impairments, were seen as ‘habilitable’, meaning they had potential as worker citizens if they could be taught to speak or otherwise function in the ‘fit’ world. Hence the establishment of residential schools which separated those with potential from their suspect families.
But certain types of intellectual impairment continued to be linked with ‘immorality’. Girls’ and boys’ homes and farm schools were founded mainly to keep the genders apart and prevent criminality, deviant behaviour and, above all, reproduction. The 1911 Mental Defectives Act carefully classified groups of ‘other’ into a hierarchy of idiots, imbeciles and feeble-minded. Special schools and special classes were provided for those deemed educable. The school medical service was founded to identify ‘defective’ children so they could be sent to the appropriate institutions and the 1914 Education Act made it obligatory for parents, teachers and police to report ‘mentally defective’ children. A residential school for ‘feeble-minded’ girls, Salisbury, was opened in Richmond, near Nelson in 1916.
The new science of IQ testing was enthusiastically embraced by the authorities when it became available. Labels such as high functioning, low functioning and mental age all added to the taxonomy and helped to classify and assign those so assessed.
In the 1920s the government consulted the public in two separate inquiries. A Committee of Inquiry into Venereal Disease reported in 1922 and the Committee of Inquiry into Mental Defectives and Sexual Offenders reported in 1925. The first inquiry concerned the role of 'feebleminded' women in infecting men and causing debauchery and corruption. The second considered 'mental defect' and its link with immorality, as well as prevention and treatment. Segregation, sterilisation, castration, and marriage certificates were remedies suggested for the perceived problems.
A short-lived Eugenics Board was established in 1928 to keep a register of 'mentally defective persons'. Theodore Gray was Acting Inspector General of Health and the Board was under his control. A member of the public wrote a ‘Mother’s Lament’ expressing concern at the proposed travelling clinics which would examine and classify ‘mentally defective' children
"Oh Mother, save me from Dr. Gray
'Cause teacher says he's coming to-day
And if I'm stupid he'll take me away. Oh, Mummie save me from Dr. Gray!"
"I cannot save you, my little child,"
His mummie said and her eyes were wild.
"You belong to the State, you're no more my child!
But Oh, my darling, don't stupid be
Or he'll say we've tainted heredity,
And must be eradicated - you and me!"
There was some discomfort in the community over the Inquiry's recommendations. Most of the more extreme suggestions, such as sterilisation of, and banning marriage with, the 'mentally defective' were dropped from the Mental Defectives Bill of 1928, much to the anger of those like Nina Barrer of the Women's Division of the Farmers' Union. Barrer was an enthusiastic eugenist, using stock breeding metaphors for the perceived problems. She published a pamphlet in 1933, The problem of mental deficiency in New Zealand, where it is written: 'There is increasing in this Dominion a grave national danger that, from the material standpoint alone, is costing the country hundreds of thousands of pounds, while, from the racial or biological standpoint, it is menacing the purity of our national stock. The present depression and its consequent problem of unemployment have been the means of awakening more people to the fact of the increasing unemployable, and the alarming rate of multiplication of the mentally deficient'.
Support for eugenic policies was widespread globally so it was not surprising that in 1939 when a German father asked the state authorities to kill his disabled baby the request was granted. That was the start of the Nazi euthanasia policies. The Nazi doctors killed more disabled children, then the policy spread to other groups which threatened ‘racial hygiene’, including Jewish people. It is estimated that over 200,000 disabled people were experimented on or killed in what is known as the ‘silent holocaust’.
Following the Second World War and the establishment of the welfare state in New Zealand, overt support for eugenic public policy lessened. But many people, including children and adults with an intellectual disability (ID), remained a target of eugenic public policies with a network of state institutions across the country. Busloads of children were delivered to these isolated communities and other adults and children arrived in curtained-off, locked train compartments. Families were advised to not reveal the existence of their sibling for fear of this ‘bad blood’ scaring off prospective spouses. The ‘inmates’ were thus often forgotten by family.
But eugenic assumptions remain today and can be heard anew in calls for the sterilisation of people with disabilities and beneficiaries, pre-birth screening for conditions such as Down Syndrome and in the development of genetic technology. Official discrimination against groups such as refugees can also be considered eugenic.
Perhaps it is time for reflection about why this flawed hypothesis continues to influence public policy.
Dr Hilary Stace is a disability researcher and Research Fellow at Victoria University. She is the author of Gene dreaming: New Zealanders and eugenics Wellington: Professional Historians’ Association of New Zealand/Aotearoa, 1998.
The Troubling Persistence of Eugenicist Thought
Michael Dougherty describes both early and more recent eugenic ideas in the United States, noting the how hard it might become for parents of Down Syndrome babies to allow these children to be born. He suggests the ‘new eugenics’ is unlikely to be overtly racialist like in the past, but will come to us in terms of ‘quality of life’ and ‘health and safety’.
Available online at:http://theweek.com/article/index/268986/the-troubling-persistence-of-eugenicist-thought-in-modern-america
Eugenics wasn’t always a dirty word
Calum MacKellar names some famous English and Scottish figures from the past that promoted eugenic policies. He reflects on past eugenic practices and how it took only a small shift in attitude about ‘worthy lives’ to lead to the crimes of Nazi Germany. He warns us to remain vigilant and to uphold and protect ‘the important inherent equal dignity and value of all human beings.’
Available online at: http://www.mercatornet.com/articles/view/eugenics_wasnt_always_a_dirty_word