Barriers to understanding

by John Boulton

It’s hard to be literate and numerate without attending school; it’s hard to find work without a basic education; and it’s hard to live well without a job.

Closing the Gap, Prime Minister’s Report (February 2015)

 

THE APHORISM ‘IF it ain’t broke, don’t fix it’ warns against unnecessary interference, but if one approach does not work after fifty years then why have the reasons for its failure not been identified, a different approach attempted? This situation applies to the poor health of children living in remote towns and communities in Central Australia, the Top End, Cape York and the Kimberley region of northern Western Australia.

I have been privileged to work as a child specialist in the Kimberley region and in clinics in the most remote communities from the old mission at Kalumburu in the north, to the community beside the desert lake, Lake Gregory, in the Tanami Desert. Given the excellence of both primary and secondary healthcare provided to this micro-society, I do not understand why there is an absence of in-depth critical analysis of the failure to improve children’s health in these areas. In order to overhaul the system, the barriers to thinking and talking straight needed to be identified. We will get clarity and rigour only if what constitutes these barriers are discussed in the harsh light of public discourse without the impediments that prevent meaningful discussion among health and human-services professionals, and in the national polity.

The health of children living in remote Aboriginal Australia has improved over the past fifty years, but the discrepancy continues to widen between their peers in mainstream urban society for all measures of health and wellbeing. Health in early life provides the prerequisites for engagement in Aboriginal society and the global economy. If adolescents cannot hear because of untreated chronic ear disease, or cannot read or write beyond a Year 3 level, or perform elementary arithmetic, they are destined for a life on welfare, a life at risk of being shortened by the early onset of preventable disease.

Many causes contribute to their poor health: premature birth; low birth weight (and its lifelong legacy of risk of early death from cardiovascular and kidney disease); streptococcal bacterial throat and skin infections. Aboriginal children in remote regions such as the Kimberley also have a four- to five-times greater risk of death in infancy compared to all children, and ten times greater in childhood.

Over 80 per cent of the approximately 650,000 people who identified as Aboriginal or Torres Strait Islander in the 2011 census live an urban lifestyle on the coast. The other eighty thousand Aboriginal people live in small towns and remote communities across the north of the nation and through the Central and Western Deserts. The divergence between the two demographics accounts for the paradox that there has been an improvement in selected measures of health and life expectancy at a national level, yet the opposite in remote districts. The people who live in these areas are subject to critical media reports about living conditions in remote communities, but the media rarely offers a nuanced analysis of the reasons for the failure of the vast amount of government spending to improve health in these remote areas.

The Strategic Review of Indigenous Expenditure reported in February 2010: ‘The Commonwealth’s total expenditure on its Indigenous-specific programs amounts to some $3.5 billion annually. This major investment, maintained over many years, has yielded dismally poor returns to date.’ The Productivity Commission’s 2014 report stated: ‘Total direct expenditure on services for Aboriginal and Torres Strait Islander Australians in 2012–13 was estimated to be $30.3 billion, accounting for 6.1 per cent of total direct general government expenditure. Aboriginal and Torres Strait Islander Australians made up 3 per cent of the population in 2013. Indigenous expenditure increased in real terms by $5.0 billion (19.9 per cent) from 2008–09 to 2012–13, while non-Indigenous expenditure increased by 9 per cent. Expenditure per Aboriginal and Torres Strait Islander person increased by 10.3 per cent, and expenditure per non-Indigenous person increased by 2.2 per cent.’ More resources for less benefit.

 

THERE ARE THREE barriers to thinking straight about the factors that contribute to the appalling health of children in remote Australia. The first is the concept of Aboriginal exceptionalism.

If, as Tolstoy wrote, ‘every unhappy family is unhappy in its own way’, then every remote Aboriginal community in northern and central Australia has its own unique history of trauma, dispossession and immiseration. The challenge is to reconcile this with the motto of the British and Foreign Aborigines Protection Society from the mid-1830s: ‘Ab Uno Sanguine’, that we are all ‘Of One Blood’. Or, in other words, we all bleed red.

Aboriginal exceptionalism emerged during the shift of national policy from assimilation to self-determination during the past forty years, and the need to resolve the tension between equal rights and difference. Emma Kowal situates this in Trapped in the Gap: Doing Good in Indigenous Australia (Berghahn, 2015) within the emergence of the construct of identity within the liberal state: ‘Today “difference” is the dominant discourse of Indigenous social justice…[and] in this discourse of difference, “social inclusion” is tied to the maintenance of cultural distinctiveness rather than its obsolescence.’ There is a paradox that derives from what she calls ‘the politics of recognition’ which arose ‘as the result of a tension in liberal values between “universal dignity” and “authentic identity”’. This rhetoric of equality camouflages the biological demands of children for nurture.

From my perspective as a paediatrician, the needs of every human baby are the same, even if they are provided in a culturally specific way: much love, affection and tender care delivered with plenty of food and warmth, time for play and sleep in a clean environment. That such a high percentage of babies and children growing up in remote Australia do not have this is a human-rights issue, not a black or white thing.

Respect for the unique historical background of each Aboriginal community and cultural-language group should not be in opposition to the contemporary expression of humanitarianism through medical expertise and public health intervention. This led me to identify the areas that had been excluded in the name of exceptionalism.

The second barrier is that we are ‘prisoners of the proximate’. This is the term that epidemiologist Professor Tony McMichael coined to characterise the limits to the clinician’s gaze, proposing that the power of the tools we use in our diagnostic assessment and management causes us to fail to take a wider view. The reductionist medical model is typically concerned with the investigation and treatment of the individual rather than looking at the social and economic causes of disease.

Three examples illustrate how this acts as a barrier to understanding the deep causal pathways for Aboriginal children’s ill health. These include the insights from Sarah Hrdy’s research in evolutionary biology on the emergence of the unique pattern of co-operative parenting in archaic Homo sapiens. Dislocation of this essential social scaffold for co-operative parenting puts at risk the care of the baby.

The reproductive success of humans depends on reconciling the opposing demands for nurture for a newborn baby and the provision of a safe environment for the dependent child for many years, and the short interval between births, compared to our cousin hominids. This is achieved by the recruitment of ‘other mothers’ (allo-mothers): grandparents, aunties, sisters and other usually female kin who contribute to the care of the baby and other children.

The relevance of this life-history strategy to contemporary child health is that if the proportion of adults to children is altered then it cannot function effectively. A single parent can raise a child but usually at a high cost to the child’s social and emotional wellbeing. This biological imperative is hidden by the commodification of childcare within Western society. In remote Aboriginal Australia the inversion of the population profile from a few precious children being looked after by many allo-mothers, to one in which half the population are young, has had profound implications for the nurture and safety of children. The grandmothers living in Central Desert communities know this too well. Quotations taken from discussions reported by the Waltja Tjutangku Palyapayi and NPY Women’s Council NGOs state:

‘It is hard for parents to look after children properly. Lots of fathers go to town to drink and the mother is left to look after the children. Some mothers play cards and then the children walk around feeling lost. They go to their grandparents for help.’

‘Many of the grandmothers interviewed were caring for little children, less than three years old…and expressed strong dissatisfaction with this as a permanent situation, which they saw as wrong but preferable to other options for the children.’

‘There is a need for more recognition of the number of grandparents who are raising their grandchildren.’

 

INSIGHTS FROM EVOLUTIONARY developmental (evo-devo) biology have been off the radar in the analysis of the lack of success of public health measures to improve growth. At least two separate factors have converged to silence this perspective. The academic discipline of social anthropology has, historically, had an uneasy relationship with physical anthropology and hence with anything that suggests genetic influences on behaviour. Insights from understanding the molecular basis of the human genome in our hominin predecessors present new chapters in the expanding book of humanity’s social origins. Knowing how nurture affects nature through environmentally acquired epigenetic influences has caused a paradigm shift to a partnership of enquiry.

The second factor that accounts for the absence of evo-devo within this debate dates back to the publication in 1859 of Darwin’s masterpiece, On the Origin of Species. The misinterpretation of the implications of human evolution for society during the last decades of the nineteenth century resulted in an increase in social exclusion for Aboriginal people from mainstream society. Various Aboriginal Protection Acts set the legal framework for the structural inequity that played out in their worsening degree of disadvantage. We now see the third-order effects from this in the entrenched morbidity from disadvantage: what the anthropologist-physician Paul Farmer calls the ‘body count of structural violence’.

Since one of the fathers of Australian anthropology, Professor Baldwin Spencer, still thought that Aboriginal people shared the bottom rung of the evolutionary ladder when he died in Tierra del Fuego in July 1928, it is completely understandable that Aboriginal people still have a high level of suspicion about earnest scientists seeking samples of their DNA for the Human Genome Diversity Project. The fraught history of the past and present treatment of such specimens has recently emerged as a major ethical challenge.

 

THE SECOND EXAMPLE is the absence of a historical comparison with the child in social history – in particular the causes for the poor health of children during the industrial revolution. From the late eighteenth century, there was a flood of impoverished families from rural areas seeking work in the industrial cities. The literature of the times gives a better picture of the appalling conditions of these families than even contemporary accounts such as Edwin Chadwick’s landmark sanitary report of 1842. One reads of the humanitarian concern of doctors such as Charles Thackrah of the Leeds General Infirmary through their submissions on the conditions of children working in the mills to the commission of inquiry that preceded the first Factory Act of 1833.

Despite the vast distances between the fate of children during the industrial revolution and the present Aboriginal experience, that historical predicament resonates with life in remote communities. Here too families have suffered from structural political forces far beyond their control, profoundly disrupting family life. For example, the damaging effect of maternal alcohol abuse on the child’s emotional and physical nurture were clearly documented in nineteenth century public health reports in Britain, but could equally apply to Aboriginal remote communities. We now understand the extent of the devastating effects of foetal alcohol syndrome on normal child development.

Subsumed within this historical perspective is the way insights from economic history inform understanding of the link between economic circumstances and the investment in human capital by the level of food and nutritional security given children across generations. From 1790, when the level of subsistence of the rural worker in England, China and India was similar, to 1890, there was a sixteen-fold differential in material wealth, through the British creation of the Third World. This shift in the distribution of global wealth was mapped onto the human phenotype (its body shape and size) as a consequence over successive generations. Professor Jonathan Wells argues that the low birth weight of babies in India, and the short stature, low muscle mass and central adiposity during adulthood, represents the intergenerational adaptive effect of nutritional constraint. This he terms the ‘nutritional ghetto’.

The situation in remote Australia is directly comparable in terms of the biological effects across generations of malnutrition from loss of food security on the frontier zone. This has a substantial effect on the lifetime risk of serious morbidity and early death and leads to the metabolic syndrome: the vicious circle of insulin resistance, raised levels of blood glucose, damage to large and small blood vessels, and a high risk for stroke or heart attack.

 

THE CONCEPT OF human capital is necessary background to the historical context of improving health and increasing longevity. The prerequisite for emotional, spiritual, social and intellectual fulfillment, let alone longevity, is not only the absence of debilitating, painful or lethal disease but intergenerational investment in nutrition. Adult stature is inversely related to length of life and risk of all-cause morbidity, and is thus a measure of human capital through investment in early childhood.

The health transition from 1870 to the 1920s, with the rapid fall in birth rate, infant and child mortality and infectious disease, laid the foundation for the benefits of twentieth-century medicine: early detection of ill health through child-health surveillance, improved nutrition and hygiene, immunisation and antibiotic treatment of previously lethal infections. The effect of this bio-social evolution on human capital during the second half of the twentieth century is now seen in the widening differences in life expectancy between the wealthy, mid- and low-income nations. There is also a widening discrepancy in measures of physical health and longevity between educated people in mainstream society and the most socially disadvantaged. Most Aboriginal people fall into this latter category, and almost all of those who live on remote communities.

In international health, the phrase ‘social determinants of health’ is understood to include low levels of material resources and education. What is less evident is the extent to which these levels are an outcome of structural inequality grounded in political and religious bias against women, or the effect of unrestrained population growth on the resources available to improve essential civic infrastructure. In developing nations, the massive economic burden from preventable infectious disease and the emerging non-communicable diseases is part of the equation because the effects erode human capital and destroy personal agency. Therefore, social determinants are in a different category from those in a post-industrial nation and should be understood not as independent causal variables but as second order markers of intergenerational disadvantage. This is particularly relevant in the effort to understand the origins of the causal pathway for Aboriginal health – an ecological approach is needed. That is, seeing the individual’s poor health status as a sign of ‘the body count of structural violence’. How and why such a person’s health is poor – their life is shortened from early onset diabetes, renal and cardiovascular disease, or trauma – requires a bio-socio-behavioural approach.

 

THE THIRD EXAMPLE is the absence of comparison with the strategies used to improve maternal and child health in nations that have suffered disruption from war and genocide within living memory, such as Vietnam and Cambodia. If these emerging nations can improve the health and reduce the infant mortality rate at low cost, why is ‘the slow road to health’ not the road remote Aboriginal Australia will travel?

The United Nation’s Millennium Development Goals (MDG), and their successor, the Sustainable Development Goals, are relevant to this. The emphasis on the future for the MDG is that it ‘moves away from the notions of absence of disease and survival towards wellbeing, resilience and capability’. They advocate that ‘the continuum-of-care concept that has integrated reproductive, maternal, newborn, child and adolescent health needs to be rethought as a lifecycle of wellbeing that is of great importance for sustainability and economic development’ and the importance of ‘the involvement of other non-health sectors to address determinants of health that are outside the health sector, such as education’. These international accepted and effective recommendations are absent from debate within Aboriginal child-health planning, even though the words reflect the tenets of Aboriginal community-controlled healthcare.

Another barrier to critical debate is the failure of non-Indigenous people in the helping professions to critically debate Aboriginal health issues because they are ‘trapped in the gap’. This is the expression coined by Emma Kowal to explain the behaviour of the willing white health- and human-services workers when they become aware of the paradox they face in their work: that to narrow the ‘remedial difference’ in order to reduce the ill health of the families they serve, their standard advice on how to alter behaviour towards health causes them the anxiety that they are advocating assimilation (because to achieve optimal health one needs to behave in a way similar to an educated non-Indigenous person). The usual outcome is one of cultural relativity, in accepting a level of ill health that would not be seen as normal in a non-Indigenous child. My argument is that the affective (emotional) outcome of this behavioural pattern has a numbing effect on the health workers’ usual critical cognitive ability.

Optimal health in the twenty-first century is predicated on being the beneficiary of many generations of good maternal nutrition as well as optimal nutrition during foetal life and early childhood. It is also self-evident that living in a clean and safe environment, with low exposure to infectious diseases and the absence of fear of domestic violence, is essential to healthy child development. All my thoughtful Aboriginal friends agree with me that these are the rights of every child. They are the human biological and social prerequisites for health, not a black or white issue.

Despite this self-evident fact, there is a real paralysis from being ‘trapped in the gap’: there is no clear, practical resolution of the failed or faltering provision of these conditions for children’s health. If health intervention (itself now nearly a taboo word) with its focus on nutrition and hygiene recapitulates the activities of the devoted community nurses during the 1960s, this belies the commitment of the ‘white non-racist’ to the historical discontinuity of the way she does her work. In other words, if what I do as a children’s doctor or nurse has as little effect on population child health as the dedicated work of the generations of doctors and nurses who came before me, I am presented with the inconvenient evidence of the continuity of history – of being yet another white person trying, but not succeeding, to do good.

Kowal characterises as ‘negative Orientalism’ the ‘otherness’ of life on a remote Aboriginal community – environmental filth, undernourished children with pus running from their ears, all-night noise and marathon card games during which thousands of dollars of welfare money changes hands and women are not available to look after their children. This is in contrast to the ‘positive Orientalism’ of features of life that appeal to non-Indigenous people, such as art and traditional dance. So for a health worker to aim to close the ‘remediable difference’ in the outlook for a child’s health by altering parenting behaviour would mean a diminution of cultural authenticity through the necessary reduction in ‘negative Orientalism’. In a similar vein, it appears that an improvement in children’s health predicated on parental behaviour may be in conflict with many of the features of the continuing pattern of traditional Aboriginal parenting. This should not be seen to put at risk the continuity of cultural authenticity.

These factors go some way to explaining the reasons for the high prevalence of poor health and growth as a convergence between the misplaced cultural relativism of health workers and the absence of concern by family members about their children’s growth and nutrition because ill health has been normalised. If all children in the community are small, then none is seen to be different despite the lack of her normal growth. Since poor growth also represents one aspect of physical neglect, it triggers referral to the statutory welfare authority. This is another barrier, due to the long shadow cast by the history of child removal in the Kimberley region, so that health workers may collude with grandparental reluctance to seek formal support for their adult children’s family.

 

I HAVE IDENTIFIED three separate barriers to critical analysis of the reasons why children’s health in remote Aboriginal Australia is so poor: Aboriginal exceptionalism; being a prisoner of the proximate; and from being ‘trapped in the gap’. Straight thinking and straight talking are needed to identify how to achieve the fundamental shift in parenting practices, so that children avoid suffering the almost inevitable early onset of preventable disease.

Straight talking means looking beyond the near horizon of the community-controlled health organisations and questioning the validity of exceptionalism. It means asking how it is that children’s health in the poorest countries to our north is improving on a miniscule health budget, and why parents there are prepared to sacrifice so much for their child’s education. There is also a need to step away from the constraints of political correctness, so that dedicated health workers do not feel ‘trapped in the gap’, treading cautiously around any child-health topic fraught with conflicting agendas, but which would be addressed with clear vision in an urban area.

In a situation in which two-way co-operation emerges in an atmosphere of trust and mutual respect, concerns over political correctness fade. Armed with understanding of cause and effect in children’s health, senior local people can then decide on their priorities and accomplish change. The people of Fitzroy Crossing in the West Kimberley have led the way in showing how this can be achieved for the prevention of the scourge of foetal alcohol spectrum disorder. It is a lesson that must be applied elsewhere.


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From Griffith REVIEW Edition 51: Fixing the System © Copyright Griffith University & the author.