The Editorial by Newell (Volume 13/4) and Articles by McMenamin (Volume 13/2), Clapton, and Newell (Vol 13/4) and the Book Review by Newell in Volume14/1 of Interaction all of which I have only recently read compel me to add my observations and reflections to this vital public debate regarding (bio)ethical issues impacting the lives of people with disability and their family Carers.
Although I am neither disabled nor the Carer of a disabled person, having watched my late mother struggle for years against the indifference of scores of medical, bureaucratic and religious professionals, in her largely fruitless and at times desperate search for help in bringing up my birth-damaged spastic twin sister, I have been actively involved over recent years in the only regional Carers organisation in the Australian Common-wealth .
The group in question is the Gippsland Carers Association Inc., a self-funded, autonomous group of Family Carers, former Carers and community supporters scattered throughout the extensive geographic region extending from the outer eastern limit of metropolitan Melbourne through to the NSW border. ABS survey projections estimate there are currently some 44,000 people with one or more forms of disability, handicap or frailty and 23,000 (unpaid) family Carers within the region.
The imposition, over recent years, of Neo-Liberal or Economic Rationalist strategic policy initiatives by senior employees of both Federal and State government administrations - in conjunction with leading members of the two dominant political parties in this country has resulted in a growing crisis, particularly among ageing Carers and those in rural locations confronted by a seemingly endless series of ideologically-driven, economic rationalisations (staff downsizings, program cutbacks, facility closures, funding withdrawls and so on) in both the disability and non-disability sectors of civil society. The most recent imposition of the GST Tax Reform, together with complete abandonment of any semblance of price control (other than labour, that is) in favour of De-regulation and the putting into place of voluntary Codes of Conduct by self-serving executive representatives of Private Sector, profit-driven corporations, has further exacerbated an already deteriorating quality of life for hundreds of thousands of Carers across the country.
With growing numbers of unpaid family Carers experiencing increased levels of stress and burn-out resulting, for some, in premature illness and even death, our efforts to obtain public assistance for the development of a highly innovative Out-Of-Home Respite Facility - where people with dependent disability could experience a stimulating holiday in a safe environment thus enabling their exhausted Carer(s) to ALSO experience an often rare, much needed restorative break from their most demanding but unpaid and unrecognised role - have thus far been unsuccessful.
One of the bases of our proposal is that like every other worker in the country, Carers are also entitled to an ANNUAL holiday break, in order to restore their physical, psychological and emotional well-being. Indeed the senior policy-makers who manage (control) the overall direction of the Dis-Ability Sector (their appellation or latest buzz-word), give recognition to the need for Carers to recharge, by incorporating within their budget strategies meagre provisions for Respite Services, which are primarily targeted at the person with disability.
Now it ought to be self-evident even to the well-paid senior bureaucrats who mouth their imported managerialist notion of Quality standards and outcomes etc (vis-a-vis people with disability) that an exhausted family Carer is far less capable of providing quality primary care to those they devote their lives to, than one who has been allowed the opportunity to restore their emotional, physical and psychic balance, strength and well-being, and is thus enabled to carry on their selfless and often extremely onerous social role, albeit at an extremely competitive and highly cost-effective rate of remuneration....no regular pay or salary increases, no sick leave, no long service leave, no access to a fully maintained motor vehicle or attending Training or Personal Development conventions etc at exotic locations....
Thus, using the Federal administrations own figures, we estimate that unpaid family Carers across Australia save the Australian community some A$23 Billion PER YEAR (a figure yet to be challenged by any of the politicians or senior bureaucrats), thereby making them even MORE entitled to an annual period of Out-Of-Home respite in line with the community norm.
The ...ethical issue which knows no name editorialised by Christopher Newell (the failure of well-rewarded politicians and senior Public Servants to adequately support people with a dependent disability OR their unpaid family Carers) can be readily described, then, by a number of names or concepts, beginning with Indifference'!
The worst sin towards our fellow creatures is not to hate them but to be indifferent to them. That is the essence of inhumanity.
George Bernard Shaw
Indifference likewise well-explains Newells the apartheid that knows no name...the existing accommodation options and appalling support options in the community for people with intellectual, psychiatric and multiple disabilities....AND their Carers.
But how to explain the indifference of so many members of the so-called caring professions which, through a stretch of the imagination, might be said to include citizen-appointed political party representatives and senior career Public Servants.
In her complementary article in Volume 13 of Interaction, Dr Jayne Clapton points to a number of potentially useful concepts and hypotheses in her concise but compelling explication of the issue of bioethics and disability. Beginning with a Latin aphorism translated as The heavens have changed but the mind remains the same, she begins her review by asserting that
The images and....words made an explicit, maybe even arrogant, proclamation of a text of triumph that can be readily attributed to the foundations of our imperialist (Australian) history. Although the land and the heavens differ, the mind and the intellect of the imperialist power remains not only the same, but dominant.
...the relationship between bioethics and disability continues to be constrained by mostly unquestioned assumptions implicit in an ongoing colonisation of disability by medicine and its close associate the law. Hence, the imperialist assumption that disability issues are marginal medical ethics is reinforced.
Addressing the rhetorical question of how this happened, she goes on to argue that a critical reading of the literature examining the relationship between bioethics and disability reveals different moral dilemmas (which are) commonly the domain of medical or functional concerns, concluding that the predominant discourse is firmly grounded in the Medical Model and Personal Tragedy views of disability, wherein themes of tragedy, suffering, undesirability, dependency and incompetency abound.
Citing Vehmas (1999), she contrasts the prevalence of bio-utilitarianism (wherein Disability, when conflated with impairment as an observable trait is viewed as undesirable, and an alien state that becomes the focus of abjection), with the labelling of both people with disability and their Carers under the rubric of tragedy and virtue, pointing out how it is not unusual for Carers to be labelled ...somewhat in a saintly manner, as special people with special gifts and, when people with disability are perceived to do extraordinary things despite their handicap are afforded hero status and seen as super virtuous for their ability to overcome such trials.
Elsewhere, arguing that when seen as cases and problems for the medical profession, the voices of people with disability (and their Carers) are not only unrecognised, but in absence, deemed irrelevant...a situation she regards as not so much a discourse of silencing, but of disqualification, concluding that what becomes apparent is a deep betrayal by the discipline of bioethics of the legitimacy of the moral agency of people with disability (and their Carers), and the authenticity of the knowledge gleaned from their lived experience, a betrayal premised upon an inadequacy and a lack of desire by bioethics to promote concepts of the just and the good....which are informed by various perspectives of disability and various perspectives of ethics.
Such a reframing is not founded only upon abstract principles such as those of imperialist medical ethics, but constitutes an approach which can account for the structuration of society, embodied personhood, the nature of relationships, and the excercise of power within them. (The emphases are mine: JF)
This sagacious conclusion is supported by Newell's editorial summation, wherein he asserts that:
If bioethics is to serve the subjects of its gaze, then surely it is time for the stories of people with disability and their carers to define ethical issues rather than our lives being the grist to the careers of those who pontificate about the problem of the disabled without direct experience of the day-to-day reality of disability.
The paradox for people with disability and their unpaid family Carers is, then, to more fully understand and explain how it is that battalions of self-styled (and quite well-paid) caring professionals can be so indifferent towards the worsening plight of the consumers or clients of their services. For with understanding arises the potential to CHANGE the status quo!
An essential first step in our understanding is to recognise that the 4 million or so Australians with some form of disability, handicap or frailty and the 2.3 million unpaid family Carers across the country are not the only groups whom the various caring professionals tend to treat with indifference.
The venality and misanthropy of just one section of these self-styled caring professionals was driven home to me recently when, upon opening the bi-monthly statement from one of our largest banks, I noticed the following sentence at the foot of the paper....
Foodbank Australia Thanksgiving Day Appeal. Cash donations can be made at any ANZ branch during January 1 - 2 February and help feed the needy.
The Needy"?....in a country...sorry, ECONOMY as rich as ours"? An ECONOMY that has several billions of $$$$s surplus money at ITS (discretionary) disposal?!!!
And yet there MUST be needy citizens somewhere out there, otherwise Foodbank Australia executives would not be asking for donations of cash, right? And there must be lots of The Needy out there, because there is a (presumably large) organisation now called Foodbank Australia to help them, right?
The one thing that really tossed me though was ...a Thanksgiving Day Appeal!
I have always understood that Thanksgiving Day was a unique cultural construct of the U$A! Maybe we have lots of poor Americans living in Australia now (I know there are lots of very poor people in the U$A)....maybe some of them have snuck in as illegal boat refugees. Then again, maybe the good folks at Foodbank Australia are collecting all the cash and sending it off to the people who look after all the poor and The Needy over there!
This minor example aside, when we include all those other Australian citizens subjected to Indifference....the Un- and Under-Employed'*, The Homeless, grossly exploited Outworkers, prison labourers, those whose quality of life and future life-chances have been irrevocably curtailed through work and war injuries, those affected by substance dependency (including of course, the millions of pill poppers out in suburbia), and last but by no means least, all those descendants of the original inhabitants of this land said to be benefiting from the billions of $$$$s handed out to the Aboriginal Welfare industry, it becomes clear that some 30% to 40% of Australian citizens are adversely affected by the indifferent treatment which the vast majority of them experience at the hands of the numerous caring professionals said to assist them.
*Footnote: [As a public news broadcaster apparently just recently discovered, any un-employed Australian who performs one hours work per week for which they receive payment, are formally excluded from official statistics as being Un-employed']
As can be readily demonstrated, a mixture of reflection upon, research into and open public discussion of the issue(s) concerning us enables more light to be shone upon the true nature of what we are dealing with. Indeed the keys to the broadening of our understanding of the contradictions of bio-ethics and, through that, the potential for positive change, are already alluded to by both Newell and Clapton. Moreover, in his lucid and empassioned preceding essay, McMenamin gives name to the immediate causal explanation for the moral bankruptcy described by Dr Michael Ryan
I say to you that the (Disability Services) Act is dead. Killed by apathy, indifference and pursuit of high office...
Indifference is a manifestation of a much older notion; that of Alienation....an idea with ancient religious origins that has been given prominent attention by nearly all of the classical philosophical trends in both the East and the West...the tragic fate of man.
Argued by some to be the result of a flaw in the very nature of human beings, or at least within individual members of the human species, such puerile explanations with their emphasis on the fallen or flawed individual fail dismally to adequately explain (let alone resolve) the burgeoning range of widespread socio-economic, political and ecological pathologies threatening the future of life on the planet.
Subsequent explanations such as those revolving around the idea by the eighteenth century German philosopher Hegel that man is alienated because human labour is alienated, opened the way to a much more grounded analysis by Marx who, in rejecting the idea of the alienation of labour as an anthropological characteristic, asserted that the alienation of labour is not bound to human existence in all places and for all future time but (rather) is a specific result of specific forms of social and economic organisation.
Thus, Alienation and Indifference are at the heart of the appalling gulf between the haves and the have-nots now dividing not just Australian society, but the world community as a whole, wherein countless millions of human beings are being relegated as cheap labour and used/exploited in the production of a mind-numbing array of commodities to be sold within a now globalised mode of production and marketing, with the surplus (profits) from same being concentrated and accumulated in the hands of a tiny minority of fabulously wealthy (and thus politically influential/powerful) elites....the 357 billionaires around the world, the 5 million millionaires in the U$A and their counterparts in Australia, Asia, Russia, the United Kingdom and so on.
At the same time, hundreds of millions of other world citizens in both the so-called under-developed Third World AND THE SO-CALLED ADVANCED, CIVILISED DEMOCRACIES are being thrown on the scrap-heap of involuntary un-employment, under-employment or unpaid labour such as that provided by family Carers of Australians with dependent disability, and forced to subsist in a marginalised status having an increasingly diminished and largely irrelevant place in either spheres of production or consumption of the massive outputs from the globally dominant system of production-for-profit.
In a society based on commodity production and a social division of labour pushed to the limits of over-specialisation, people become prisoners of their particular trade or profession and, seeing only the problems and preoccupations of their specialised job/occupation/profession, tend to have a restricted social and political awareness because of this limitation. One important observable outcome of all this is the tendency to turn relations between human beings into relations between things or objects, a phenomenon referred to as reification. Washington is said to be angry at Australia'/'Canberra over e.g., currency controls, Australian industry protection policy, a change or cancellation in arms purchases or whatever.
Thus, through the application of military and/or medical metaphor, the needs of The Economy (which primarily benefits, of course, the obscenely over-paid CEOs and wealthy owners or majority shareholders of huge private corporations) are given priority over the urgent unmet needs of exhausted unpaid family Carers, including for example, a desperately needed and well-deserved annual out-of-home respite break or holiday. Indeed the language or rhetoric of Neo-Liberal or Economic Rationalist theory masks the socio-economic inequalities and injustices endemic to late Capitalism, enabling not only The Rich and now Super-Rich to experience their elite, privileged lifestyles, but also the battalions of various professionals and members of the New Class of highly-credentialled and well-rewarded (but often appallingly ignorant) employees who help manage'(control) the system on a day-to-day basis.
The ethics of the Capitalist class and the Professional-Managerial class acolytes who serve and seek to emulate them.... work (narrowly prescribed), acquisition, accumulation, self-interest stand in stark, diametric contrast to the ethics of Carers. Indeed as Professor Michael Pusey (1988, 1991) and others have pointed out, there are clearly discernible sociological characteristics which distinguish the dominant policy makers or players in the both the disability and non-disability related bureaucracies (corporate CEOs and senior professionals in huge private corporations and the all-powerful federal Treasury Department for example) from the great bulk of ordinary Australians, whom they are said to serve. And in a De-regulated, free-market economy, wherein the notion of a Welfare State is regarded by both political and business leaders as passe and in need of urgent re-form or re-structuring and eventual dismantling (except for the annual handover of billions of dollars of public funds to corporate executives in the numerous forms of industry assistance, enterprise/development grants, Tax breaks or holidays and other incentives.... Corporate Welfare), the most critical difference remains their socio-economic class status.
Whereas throughout the immediate post-Second World War decades the income gap, quality of life and life-chances or opportunities between senior management incumbents, the various professionals and workers were maintained at culturally acceptable relativities (giving the impression of a democratic or egalitarian system), by the early to mid-1970s the hidden contradictions endemic to Capitalism at other levels could no longer be managed, and the post-war economic miracle or bubble gave way to a series of widespread economic slumps or recessions, which continued to defy all extant theories and attempts to re-solve them; the (Capitalist) system was in crisis....again!
In order to avert the truth regarding the inherent instability and hidden contradictions of this highly anti-social and divisive mode of (social) production and distribution of the Earths bounty, the situation called for the urgent introduction of massive re-forms. Thus, throughout the late 1970s and early 1980s a series of carefully-orchestrated political and economic changes swept both the advanced/developed Western World and the less-developed/developing Third World, via highly conservative Think Tanks, the Big Five international accounting and management firms (Pricewaterhouse and the like), and centralised bureaucratic bodies such as the Organisation for Economic Cooperation and Development (the OECD), the World Bank, the International Monetary Fund, the International Labour Organisation and the universities. Among the key strategies employed to effect the success of the re-form process were the re-introduction of classical eighteenth-century economic theory (Neo-classical or Neo-liberal economics; or, as it is referred to in this country, Economic Rationalism), and the focusing of public attention upon the ideologically-derived crisis of The Welfare State.
The work of Professor Anna Yeatman (1990) in her study of public administration in Australia and the complexity of the late-twentieth-century state in advanced capitalist societies is most insightful. For Yeatman, this complexity (said to be producing the crisis in The Economy, The Welfare State, the health system, Education and so on) arose from several factors....
The first is the proliferation of interests and movements that make claims on the state and its power to distribute social goods and values. Their claims variously shape the agendas of public policy and the character of social programs. Because these claims involve differently positioned interests they often conflict, and those conflicts politicise the construction of policies and programs. The symbolic politics of such contests becomes critically important because it is in linguistic practices that certain claims, and not others, are valorised.
Within Australia, as elsewhere, then, reform of The Welfare State called for the modernisation of the numerous Common-wealth and State Public Service structures.
Under the leadership of the Whitlam Federal Labor'* Government and their Labor counterparts in South Australia, New South Wales, Victoria and Western Australia at the time, a cultural transformation or revolution in Australian Public bureaucracies was begun, a process intensified under subsequent governments controlled by both dominant political parties and alliances, and still in effect to this day.
* Footnote: (the American spelling of the name of the political party said to represent and protect the interests of Australian workers and working class families remains as symbolically insightful today as at its historical introduction to the world)
Public service and administration were re-labelled public management'; Public Servants became Chief Executive Officers (CEOs), public sector managers, and public sector employees. Traditional age-old structures (based upon military and religious hierarchies), with armies of Secondary-educated clerical and other administrative workers, led by long-serving experienced managers drawn from their ranks and an elite minority of university educated men at the top of the Service, most of whom had received an eclectic education which included training in the liberal arts, were replaced by often much younger and less experienced tertiary graduates with specialist qualifications in eg economics, commerce, law or psychology etc., often topped off with an MBA or Master of Business Administration degree.
A managerialist orientation - based upon Scientific Management theories was built into current and future expectations of administrative practice, with performance agreements (modelled on the relationship between the CEO of a private, profit-driven firm and its board of directors) entered into with the CEOs of particular government departments and agencies, facilitating the kind of autonomy any CEO might expect to allow him/her to get on with the job, but also ensure that what they did was at all times within the operational definitions of the policy and budget constraints of the governing party of the day.
With these emphases on results-oriented management the purposes of public administration and public service tend to be reduced to the effective, efficient and economic management of human and financial resources. This is a technical approach to public administration and public service couched within a broader policy framework dominated by economic consideration. The later is evident in the assumptions that government activities should be measured in terms of their effective resource management ('doing more with less') and that, where it is clear that for some reason such effective resource management is not possible (the service is too costly), the government should attempt to reduce this service or drop it altogether.
As Yeatman discerningly asserts, all of this may bring (internal) tensions (a reality confirmed by Pusey in his lengthy and extensive research into the most senior echelon of the Australian Public Service), however what is clear is that the thrust of these reforms affected the leadership levels of public bureaucracies, not the middle-management levels ... and certainly not the workers at the coalface.
The reforms concern more effective and sophisticated centralised controls over public bureaucracies. These controls emphasise technique and ...are designed to offset and limit the influence of content, namely commitments and loyalties which are tied to particular departmental or agency portfolios and which acquire authority through the development of specialised experience and links to client groups.
....Thus, in the modernised Australian public services of the 1980s, management is viewed as context- and content-indifferent. A good manager can be a good manager anywhere, regardless of portfolio and the values, knowledge and experience of the manager.
Pointing out that the belief that a manager is a manager wherever they are is especially entrenched within the Common-wealth Public Service -wherein senior employees are shifted from area to area without their having sufficient time to become familiarised with their area of responsibility, or to establish effective working relationships with those (subordinates OR peers) whose roles and positions are intimately linked to or tied into the content of the portfolio, she goes on to assert that this is necessarily a situation where people and their commitments and experience are not highly valued.
It is certainly a situation that belies the management literatures which propose that it is people and their relationships which make things happen and make higher quality outcomes possible. For those of us oriented to (positive social) change, it is a situation which maintains the status quo precisely because it undermines the stability of networks and lateral connections between people on which any genuinely workable change is dependent.
The effects of the belief in context- and content-indifferent management are not conducive to good and creative public service.
Such beliefs are however essential to a successful and economically rewarding career as a member of the New Class of highly mobile and flexible professionals who occupy senior positions of influence throughout the private and public sectors around the world. Indeed as several observers have shown, these technocratic incumbents are seen and see themselves as not tied to any national ethos or culture; having little or no allegiance to any particular state or country, let alone group or class of people such as the disabled or their Carers, all of whom they tend to regard as a non-productive drain on The Economy.
Such is the power of these highly-positioned professionals that even all but the most senior domestic politicians are made subject to their economic dictates and strategic policy initiatives. Moreover, concerned to protect and preserve their individual careers and incomes, few subordinates within the still-substantial ranks of the Human Services bureaucracies around the country will engage in any serious attempt to counter the econo-centric, ideologically-driven agenda of their superiors, opting instead to carry out endless consultations, enquiries, demographic and statistical analyses, and reports describing largely meaningless or impractical minutiae and fiscal or monetary constraints. As Barbara Ehrenreich (1990) has observed, with the exception of the odd whistleblower, despite their pretensions of professional objectivity and neutrality, the fear of falling is a constant among middle class professionals.
Meanwhile, tens of billions of dollars of public funds can be found to hand over to the directors and CEOs of the huge foreign manufacturers and distributors of the latest, state-of-the-art weapons of mass destruction, under the cynical mantle of Defence Spending. Added to this, of course, must be the billions of (inflationary)dollars wasted each and every year on un-necessary advertising and packaging of myriad commodities ranging from junk foods and beverages, alcohol and tobacco products and highly commercialised sport, to vast numbers of often over-powered and lethal motor vehicles, most of which are clones of their competitors latest models and used to transport their lone occupants/owners into polluted cityscapes via congested freeways. And as the mother of a 21-year-old disabled daughter pointed out...
Now we hear repeatedly about the help and provision for many children with disabilities in school being so terrible, that the parents are withdrawing their daughters and sons from school. Yet we dare to put ourselves forward to host the Olympic Games... We have the national person power and resources to quickly despatch multi-million dollar retrievals when international lone sailors and now balloonists are lost at sea. As a nation we are always there to rescue wealthy adventurers when their risk-taking goes wrong. (Yet) For some reason, we are steadfastly unavailable to do the hard, hidden, lonely work of caring for and including our most vulnerable citizens.
(Cited in Interaction, V14, 2&3)
Everyday observation and reflection by humanist scholars, philosophers and ordinary citizens alike ought inevitably to evoke the understanding that a truly civilised human existence or life implies that I have no need for rights against you, a notion expressed by Aristotle, author of the greatest of Ethics books, when he said..."between friends there is no need for justice.
Rights are inseparable from social obligations; both are embodied in the concept of law, often referred to as Right (as opposed to Rights'). The notion of Right develops historically and expresses in each epoch How must we live? Thus, at one point, social welfare is left to the domain of kinfolk; then the state intervenes and assumes part of the responsibility of the family; later, the state exits from welfare and the family dissolves into the market, with domestic labour ostensibly provided via the service sector, on a user pays and profit-driven contractual basis.
The pinnacle of human rights is, of course, the right of ALL people to a living, irrespective not only of whether a person has produced value, but of anything!
However Capitalism is increasingly moving in the opposite direction, providing to everybody an abstract equal right to destitution or oppulence. The day we live by Ethics and not by Economic Rationalism is the day Capitalism is over.
The practice of putting a value on everything so that it can be traded for the best possible price has a limited life-span. Few today still believe in the myth of a self-stabilising market - the world economic system (Capitalism) is mainly characterised by dysfunctional complexity and instability.
The most important problem facing humanity today is not a question of Science -(genetic engineering, economics, management psychology, Space/weapons and so on) but, rather, a question of ethics...of how we should live; a question which CANNOT be answered by Science.
The task entailed in living humanely involves the exorcism of ghosts; the demolition of the theoretical chains which bind people to the monetary system and the concepts and social constructs which reflect the fictions and myths of bourgeois society. It is not the erection of new theories or concepts, but the demystification of old ones!
I am indebted to Andy Blunden for key aspects of the above.
Our thanks also to Christopher Newell, Jayne Clapton and Jim McMenamin and indeed all those behind the production of Interaction, for their efforts towards furthering the long struggle to bring understanding and enlightenment to the public agenda, with the view to securing social justice for all the hundreds of thousands of unpaid family Carers across Australia and those for whom they care.
Gippsland Carers Association Incorporated