Disability, Human Rights and the Limits of Humanitarianism

Michael Gill, Cathy J. Schlund-Vials

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317150121
• Edition: 1
• Topic: Scienze sociali
• Subtopic: Disabilità in sociologia

Disability studies scholars and activists have long criticized and critiqued so-termed 'charitable' approaches to disability where the capitalization of individual disabled bodies to invoke pity are historically, socially, and politically circumscribed by paternalism. Disabled individuals have long advocated for civil and human rights in various locations throughout the globe, yet contemporary human rights discourses problematically co-opt disabled bodies as 'evidence' of harms done under capitalism, war, and other forms of conflict, while humanitarian non-governmental organizations often use disabled bodies to generate resources for their humanitarian projects. It is the connection between civil rights and human rights, and this concomitant relationship between national and global, which foregrounds this groundbreaking book's contention that disability studies productively challenge such human rights paradigms, which troublingly eschew disability rights in favor of exclusionary humanitarianism. It relocates disability from the margins to the center of academic and activist debates over the vexed relationship between human rights and humanitarianism. These considerations thus productively destabilize able-bodied assumptions that undergird definitions of personhood in civil rights and human rights by highlighting intersections between disability, race, gender ethnicity, and sexuality as a way to interrogate the possibilities (and limitations) of human rights as a politicized regime.

Chapter 1 The Promise of Human Rights for Disabled People and the Reality of Neoliberalism

Mark Sherry

DOI: 10.4324/9781315577401-1

Over the last 20 years I have worked as an advocate with families of over 5,000 people with brain injuries, mainly in Australia and the United States. In that time, the vast majority of people I have met struggle to get their very basic needs met: whether it is being able to decide what time they eat if they live in a group home, or trying to have friends (even one friend seems a pipe dream for many of the most vulnerable and socially excluded people), or trying to get off the guaranteed poverty of the disability pension and into a position where they can actually make a decent living. With few friends, sometimes distant relationships with other family members, and few advocates, they are vulnerable to abuse and hate crimes. Feeling emotionally or physically safe is a basic human right, but in a wider context of everyday disablism, social exclusion, and poverty, it seems this basic requirement for a decent life is not guaranteed to many disabled people.

In both Australia and the US, life as a disabled person usually involves poverty, social exclusion, prejudice, discrimination, and endlessly dealing with bureaucracies that require enormous emotional and physical effort, just to keep your head above water. I have seen some people succeed in this process, but I have seen far more fail, and I advocated for one man who committed suicide because the everyday face of disability discrimination got too much for him. This is the background, the mirror, against which I judge the everyday workings of the major political framework of our times – neoliberalism. Contemporary neoliberalism, which is dominant in both Australia and the US, has a nasty side – one that can be seen when people are forced to make difficult decisions about whether to buy food or pay the rent, when they spend years of their lives unemployed because no one is hiring disabled workers, or when they spend years in social isolation and feel as though they will never have any friends, such is society’s exclusion of disabled people.

Against this background, the policies of contemporary neoliberalism mean more cutbacks to disability pensions, more hardship for the poor, more punitive monitoring of people receiving benefits, and all surrounded by less government intervention in the market economy and more tax breaks for the wealthy. The language of human rights and protecting human dignity – which is dominant in so much of the official policies of both Australia and the US – sounds remarkably hollow to people experiencing abuse, homelessness, institutionalization, poverty, discrimination and social exclusion. This is the background against which I measure the empty rhetoric of neoliberalism on human rights.

Contemporary neoliberalism takes many forms, but is united around the demand for a reduced role for government in all sectors of political and economic life, including social welfare. Volunteerism, philanthropy, individual charity, corporate responsibility and a laissez-faire approach to the economy are upheld as the most effective mechanisms to address social issues, and to promote political and economic freedom (Bumiller 2008; Harvey 2007). The neoliberal agenda is dominant in the age of globalization; it is said to both provide improved economic outcomes as well as enhanced global protections for human rights. Indeed, governments committed to the neoliberal agenda have agreed to include disability provisions in national and international human rights law and politics.

One of the paradoxes of contemporary neoliberalism is that it promises freedom and human rights, but leaves most disabled people in impoverished, socially isolated situations, with few safeguards and protections, struggling for the basic dignities of life. Many disabled people are trying to achieve very basic things: a sense of control over what happens to them; a degree of economic security; being able to make important choices about their own lives; feeling physically and emotionally safe; having the chance to get a job, make a decent income or get a good education; and trying to form some sort of meaningful relationships with other people. We live in an age of globalization where neoliberalism reigns supreme; the lack of basic supports and safeguards for millions of disabled people is a reflection of the hollow promises of neoliberal discourse on human rights.

The language of “human rights” has been appropriated and incorporated by organizations promoting neoliberal globalization, and human rights organizations have also adopted neoliberal discourse in many cases (Erni 2011). The rhetorical commitment to human rights of neoliberal organizations, such as the World Health Organization and the World Trade Organization, is nevertheless contradicted – at least to some degree – by their commitment to free market economics (Feldman 2006). Feldman argues that free market, laissez-faire economics increase economic inequality, which in turn exacerbates poverty-related impairments and health disparities and may make it harder for poorer people to access health resources. Equally important, framing health and healthcare as simply another commodity on the free market misrepresents their true nature as “public and social goods” (Chapman 2009, 97). Coburn and Coburn (2007, 13) maintain that “market fundamentalism” generates economic/social/cultural inequalities which create health inequities, healthcare barriers, unaffordable medicines and other barriers to human rights: “The dogmatic application of neo-liberalism doctrines perversely increases those social inequalities that are among the basic causes of health inequities.” Indeed, they state:

Viewing health inequalities as part of the product of neo-liberal economic globalization and health and health inequalities as being caused by, and covarying with other forms of inequality, connects health with much broader struggles. (Coburn and Coburn 2007, 29)

While Coburn and Coburn specifically focus on “health inequalities” (and the ways in which social inequality creates the conditions for inequalities in the experiences of various health and illness experience), their argument can easily be extended to include impairment and disability as well.

There is a danger, when the discourse moves from “disability” and “impairment” to “health conditions” or “illness” or “disease,” that the discussion will subtly slip from a social model of disability (Oliver 1990) into a medical model of disability. This is a concern for disability activists who have worked tirelessly to ensure that social exclusion, discrimination and disabling barriers are recognized as social problems, and are not a necessary component of living with an impairment. However, the fine line between disability and disease is complicated; AIDS provides a clear example of their overlap. People with chronic health conditions, like depression, chronic fatigue, back injuries, or autoimmune diseases, may be regarded as disabled. They experience many of the same disabling physical and attitudinal barriers as other disabled people. Their poverty puts them at risk, both for social exclusion and also for secondary health conditions. They may struggle to get appropriate medical diagnoses, to pay for treatment, or to find a job that pays enough to make a decent living – just like other disabled people. Their lives are similar to many other disabled people; they are struggling for basic human rights (respect, autonomy, economic security). This is the sad reality of “human rights” in the everyday lives of disabled people and people with chronic health conditions.

Some may wonder whether the international UN Convention on the Rights of Persons with Disabilities (2006) will address these problems. But to believe its promises is to buy into neoliberal rhetoric about human rights, outside of its wider political context of massive national and international economic inequality and the reality of cutbacks on the essential spending that disabled people need to achieve equal rights. The Convention itself even contains foreboding neoliberal rhetoric – under the heading “General Obligations,” the second point commits signatories to “take measures to the maximum of its available resources” (emphasis added). Given that the “maximum available resources” have been defined by dominant political perspectives that have imposed austerity measures and cutbacks which greatly reduce the rights of disabled people, there is little room to be optimistic. Of course, that does not mean one should abandon the commitment to “human rights” discourse; it does, however, mean that one must critically examine the deployment of such discourse in light of the material consequences of various economic policies. One must deconstruct the hegemonic connections between neoliberalism and human rights discourses so that a human rights discourse can be used to challenge dominant assumptions of neoliberal globalization.

Neoliberal Discourses, Individualism and Human Rights

Neoliberal discourse on human rights commonly has a narrow individualist focus, with a strong assertion of civil and political rights, and much less emphasis on economic, social and cultural rights (Kirkup and Evans 2009; Weller 2009). Such a narrow, individualist conception of human rights is particularly problematic for disabled people, given their simultaneous exclusion in political, economic, civil, social and cultural spheres. It is impossible to separate the poverty experienced by the vast majority of the world’s disabled people from inaccessible environments and prejudicial attitudes; it is equally impossible to imagine political and cultural empowerment without these broader changes. As one study of people with chronic illness in Columbia suggests, neoliberal healthcare systems exacerbate an unequal distribution of wealth and power, reinforcing the social exclusion of vulnerable groups (Pilar et al. 2012).

The state has a particularly important role to play in the human rights of disabled people. Governments make decisions about national healthcare schemes, which have major ramifications for most disabled people. Moreover, given its role in providing, regulating and funding social welfare programs, the state is responsible for maintaining welfare levels that impose and guarantee poverty for disabled people. Being on a disability pension (where it is available) is almost a guarantee of lifelong poverty, poor health care, and few opportunities for a better life. And yet the presence of such policies is often regarded as an informal indicator of the respect a government has for the human rights of its disabled citizens.

Governments also regulate access to voting rights – commonly using intellectual or cognitive status or psychiatric diagnoses as a basis for excluding some community members from political participation (Callard et al. 2012). Such policies commonly institute disablism, sanism and other forms of prejudice based on (certain assessments of) cognitive abilities as a gatekeeping mechanism within the political process. Interrogating the notion of “human rights” through the lens of disability further highlights the problems with traditional conceptions of human subjectivity that underlie many discussions of political rights. Such discussions tend to be based on individualism (rather than interdependence) and disembodiment (rather than recognizing that the body materially influences, and is influenced by, its social settings). The notion of “human rights” underpinning neoliberal discourse is a disembodied one: it fails to recognize that power is expressed through, in and upon the body.

Some disability organizations in the US are deeply committed to the rhetoric of “independent living.” And yet the rhetoric of “independent” living is inseparable from the wider influence of American individualism. In Australia, many disability advocates have asserted the importance of “interdependence,” rather than “independence,” as the foundational discourse of the disability movement. The rationale behind such a model of interdependence is that it is located within an ethics of relationality – emphasizing the two-way connections between disabled people and others in their lives. It has a parallel in some of the literature on disability and care: again, recognizing that disabled people can be simultaneously providing and receiving care enables a richer understanding of the reciprocity and relationality involved in care (Deacon 2007). Such recognition is an important reminder for disability theorists: it is essential to move beyond a narrow, individualistic model of human rights and into a more complex examination of the relationships and social structures within which such rights may be realized. Part of that process will undoubtedly involve an exploration of power and the body.

Power and the body are deeply enmeshed (in both a physical and social sense). However, a disembodied approach to human rights masks the ways in which embodiment is influenced by, and reproduced within, wider social dynamics. For instance, it is virtually impossible to discuss disability without discussing social class. Whether one considers intellectual disability, asthma, autism, stroke, spinal cord injury, brain injury, blindness, deafness, or almost any other major health condition, people who are poorer are far more likely to experience impairment (Sherry 2008). Power materially shapes the body. And of course, the ability to deal with any impairment (or even to afford medical treatment) is deeply influenced by the amount of social and economic resources available; responding to impairment in the context of a society full of disabling barriers is refracted through the privileges and inequities of class. This basic connection between disability and inequality means that in order to change one, it is necessary to change the other. But neoliberal rhetoric about human rights is thoroughly individualist – immediately marginalizing any discussion of the collective nature of social inequality and the need for widespread social change.

Another related issue is that disabled bodies are often devalued – to the point where disability is often still assumed to be a life not worth living. This flawed cultural assumption is most evident in the attitudes towards the abortion of disabled fetuses. Eugenics has effectively been privatized in the modern world (Kerr and Shakespeare 2002). Large numbers of disabled bodies are still being aborted – but the decision to do so has moved from the public (state) sphere to the privatized one of doctor’s rooms and people’s homes.

In short, the individualist assumptions which underpin neoliberalism threaten the human rights of disabled people because the experience of disability is both collectively shaped through social inequality, and because many forms of prejudice (such as the desire to abort disabled fetuses) are masked in a neoliberal ideology as “individual choices,” even though they systematically threaten the human rights of disabled people.

“The Human Right to Health”

In recent years, there has been an increasing tendency to include “the right to health” in human rights discussions at a regional, national and international level (O’Connell 2010). While seemingly uncontroversial, this valorization of health as a “human right” places some disabled people at particular risk. Many disabled people are healthy, certainly – but there are others who are not “healthy” and who never will be “healthy.” If a person’s very being situates them outside the realm of a discourse of “huma...