Pearls and Irritations

Two significant reports concerning people with disabilities are due be released. First will be the Independent Review of the National Disability Insurance Scheme and second, the findings of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Underpinning both inquiries is Australia’s commitment to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) with Australia being one of the first to sign and ratify it in 2008.

Two forces which are in juxtaposition have been impacting upon the achievement of full inclusion and emancipation of people with disabilities into society. The first is the history of the United Nations human rights declarations and conventions. While human rights initiatives have supported grassroots movements such as choice, self-determination, and person-centred supports; the second force, neoliberal philosophy, has commandeered these concepts into a culture of managerialism and individualism.

It is suggested that the traditional welfare system in both low-income and high-income countries has been captured within a neoliberal market economy. Economic rationalist policies are based on the principle of “utility maximisation” where persons can use their resources to achieve their highest level of satisfaction. At the same time, they are free to choose how to use their resources free of interference by governments.

The market economy is driven by the principle of utilitarian individualism which is recognised as the hallmark of neoliberal economic philosophy. Paradoxically, several of the current disability advocacy policies and the general philosophical principles of person-centredness, self-determination, independence, choice, empowerment, and more control over one’s life do appear to resonate with the principles of the market economy. However, the emphasis upon individualism and independence can be a threat to vulnerable people especially those with disabilities whose dependence can be seen as a moral threat to their standing in comparison to that of other human beings. Nevertheless, interdependence is the essential hallmark of the general human condition wherein communities can provide mutual support.

In assessing a country’s compliance to the articles of the Convention, the UNCRPD monitoring Committee generally takes the more juridical approach rather than asking the question of whether the Convention is contributing to an increase in well-being, happiness, and overall quality of life of people with disabilities. In this respect there has been some promising research developments underway to link various articles of the CRPD to domains of quality of life. Several countries are now following the lead of the small Himalayan nation, Bhutan, which established a Gross National Happiness Commission in 1972 to monitor changes in the nation’s happiness. Likewise, the Nobel Prize winning economist Amartya Sen’s development of the capabilities concept influenced the development of the Human Development Index by the United Nations. In 2004 The Organisation for Economic and Community Development (OECD) launched a Global Project on Measuring the Progress of Societies and in 2011, its launch of Better Life Initiatives. Both the United Kingdom and the European Union have appointed ministers of state for happiness and the New Zealand finance minister launched a “wellness budget” in his 2019 budget.

Professor Emeritus Ron McCallum, in his capacity as a special advisor to the Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, recently presented a report on the level of Australia’s compliance to the articles of the CRPD. McCallum pointed out that Australia, as a wealthy country should be held to a high standard. Nevertheless, after more than a decade since its ratification of the CRPD, there remained many articles that had not been adopted into Australian law. In addition, the research showed that there were still too many Australians with a disability who experienced discrimination, disadvantage, and violation of human rights especially among its First Nations peoples. The report noted that throughout history people with cognitive, psychosocial and sensory disabilities have especially suffered from both the unequal and discriminatory application of the law.

Many State Parties, including Australia, face a potential clash between political and civil rights and those deemed to be economic, social and cultural rights. It is useful to observe that Article 4(2) of the CRPD provides that while State Parties may work towards the realisation of economic, social and cultural rights; political and civil rights must be granted immediately by ratifying countries. The McCallum report noted, however, that there is a grey area between aspects of the divergence between civil rights and economic rights. These issues reflect the difficulties people with disabilities in general may have in navigating and understanding the complexity of the rights approach in the everyday aspects of their lives. This report’s forensic examination of Australia’s compliance with several of the CRPD articles relevant to the Royal Commission’s terms of reference has revealed that Australia has a long way to go in meeting its obligations under the treaty it ratified.

The other significant area where human rights initiatives appear to be failing people with disabilities in general and especially people with intellectual disabilities relate to abuse. Both international and national studies have revealed the various forms of abuse that have impacted on people with disabilities. People with intellectual disabilities can be at higher risk because of communication difficulties and their tendency towards acquiescence with others they view as being in authority.

Hans Reinders an ethicist from The Netherlands offered an alternative to what he has termed “the narrow conception of morality”. He suggested that,

…dependent others are accepted because their lives are placed in our hands. We can reject their existence and consider their lives are not worth living. We can leave them to be taken care of by their families and grant them the right to be sovereign of their own lives. But we can also accept responsibility for the fact they are part of the web of social relationships that constitute our moral world.

The challenge, then, is how do we create environments where the interdependence of individuals is a central feature and where individuals perceive their identity and conceptualisation of self in the context of a mutually dependent society? It is suggested that reciprocal relationships with people in your community goes to the very heart of the definition of true and effective inclusion. Reinders’ observation that, “People can be forced to comply, but they cannot be forced to care” highlights the weakness of a juridical approach to human rights.

It is this spirit of co-dependence which is captured in Dokecki’s concept of an “ethical community”. He argued that “… we should work toward an ethical conception of community, which establishes that all persons are fundamentally equal as human beings”. A key element in the concept of an ethical community is the proposition of “caring” raised by Reinders above. For instance, David Schwartz, a respected US commentator suggested that:

The correct tool for caring…arises from an understanding of a contrasting world view which we can term ‘associational’. It recognises that caring always arises in a cultural setting, and that it always is something that happens between people. It understands that the psychological sense of community is the key concept which lets us know if a cultural context exists in which caring is likely to arise.

In respect to earlier comments concerning the juridical nature of the CRPD and the dominance of the neoliberal forces in the formulation of disability policy and practice, Schwartz’s contrast between the professional/bureaucratic and the associational world views in the context of how public policy can either support or suppress the notion of a psychological community is especially pertinent to the ethical community proposition.

At the turn of the century, H. Rutherford Turnbull a leading US jurist and parent of a son with intellectual disabilities pointed out that each member of a community must recognise that all are vulnerable in some aspects of their lives. As a first step, therefore, the ethical community must recognise what Turnbull eloquently suggested as “a mutuality of need and reciprocity of vulnerability” An ethical community would also recognise that all persons are equal as human beings, and all persons are dependent on others in a metaphorically deep way the development of an ethical community would be an antidote to one of the most significant barriers to the implementation of the spirit and reality of the CRPD, namely the growth of individualism and the market-based economies which fail to recognise the important role communality has played in the history of the human species.

Whilst the quality of life and social inclusion of people with disabilities may appear to depend upon external socio-political-economic forces beyond their control, their level of acceptance as fellow human beings and citizens can be influenced by the humanity and compassion of the general community. Therefore, it is imperative for the achievement of full inclusion of people with disabilities that there is an engagement with the wider community in its journey to quality of life and happiness. We have possibly been too focused on the needs of people with disabilities in isolation from those of the wider community, and in so doing have failed to recognise the reciprocity aspect of the inclusion process. Have we been sufficiently strategic in our thinking, our policies, or our actions? In conclusion, the prophetic words of poet John Donne are apposite in the context of the case for an ethical community: “No man (sic) is an island, entire of itself. Every man (sic) is a piece of the continent, A part of the main.” (John Donne, Meditation XV11).

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