Dis/ability Studies

Theorising disablism and ableism

Dan Goodley

• Editorial: Routledge
• Año: 2014
• ISBN:
  9781134060900
• Edición: 1
• Categoría: Sozialwissenschaften
• Categoría: Behinderungen in der Soziologie

In this ground-breaking new work, Dan Goodley makes the case for a novel, distinct, intellectual, and political project – dis/ability studies – an orientation that might encourage us to think again about the phenomena of disability and ability.

Drawing on a range of interdisciplinary areas, including sociology, psychology, education, policy and cultural studies, this much needed text takes the most topical and important issues in critical disability theory, and pushes them into new theoretical territory. Goodley argues that we are entering a time of dis/ability studies, when both categories of disability and ability require expanding upon as a response to the global politics of neoliberal capitalism. Divided into two parts, the first section traces the dual processes of ableism and disablism, suggesting that one cannot exist without the other, and makes the case for a research-driven and intersectional analysis of dis/ability. The second section applies this new analytical framework to a range of critical topics, including:

• The biopolitics of dis/ability and debility
• Inclusive education
• Psychopathology
• Markets, communities and civil society.

Dis/ability Studies provides much needed depth, texture and analysis in this emerging discipline. This accessible text will appeal to students and researchers of disability across a range of disciplines, as well as disability activists, policymakers, and practitioners working directly with disabled people.

Part 1
Finding dis/ability studies

1
Disablism

The study of disablism came of age at the end of the last century. Disabled activists had wrestled for social recognition, petitioned for cultural representation and lobbied for political participation. Studies of disablism reacted theoretically to this politicisation. Scholars can now reminisce about 30 years of intellectual and political progress that has moved disability studies, as Newell (2006) puts it, from critique to a body of knowledge central to the discussion of disability in its own right. We can unravel numerous theoretical predilections. We might locate these geopolitically (in terms of pan/national location), place them temporally (by way of an historical overview) or house them in various epistemological or disciplinary dwellings. Disability theory emanates from the perspective that disability is a sociological, economic and cultural thing rather than a psychological, embodied or medicalised problem. This chapter captures different kinds of disability studies:

1. The usual problem/s of disability: medicalisation and individualisation
2. Social models and disabling barriers: made in Britain
3. Cultural locations: North American and Canadian landscapes
4. A World (Health Organisation) perspective
5. Conclusion: theorising disablism in a time of austerity.

The usual problem/s of disability: medicalisation and individualisation

If any justification were required for critical studies of disablism, then one only needs to interrogate common-sense ideas that float around disability. While we live in a society that is increasingly sceptical about science and medicine, disability has had a long history of connection with the men in white coats and the grey institutional walls of the hospital, clinic and asylum. Disability is a problem and an almighty one at that. Disability is normatively understood through the gaze of medicalisation: that process where life becomes processed through the reductive use of medical discourse. This is not to say that medicine necessarily limits our thinking about disability. Indeed, as Couser (2011) comments, medicine has given many (disabled) people their lives. Simultaneously, medicine ‘tends to demystify and naturalise somatic anomaly, stripping away any supernatural or moral significance and characterising physical variation solely as a matter that science may investigate and attempt to remedy’ (Couser, 2011: 23). Herewith lies the problem. During those moments when disability is phrased through medical knowledge it threatens to be read solely through biological, genetic, hormonal, neurological and physiological language. Too often disability is found and medicalisation aroused. The study of disablism reacts to the ubiquitous individualisation of the problems of physical, sensory or cognitive impairments. Disability studies take as their bread and butter an oppositional stance to the ubiquitous individualisation of disability within the solitary individual.

We are all engaged in personal and private methodologies for making sense of ourselves and others through dominant discourses that envisage the odd, different, disruption, unusual and outlier in terms of ready-made labels, conditions and syndromes from the medical register. Our obsessions with our own bodies and biology, fuelled by institutional, expert, scientific discourse and the fascinations of popular culture trains our thoughts on to our individual selves, our minds and our bodies to check how we match up to a normative model of humanity. Our dealings with biology – a term that derives from the Greek word bios (life) and the suffix logia (study of) – start early in life. Antenatal stages of life implore would-be parents to make choices around conception or termination of a fetus. Decisions are complicated by the identification or risk of impairment: physical, sensory, cognitive differences traditionally understood through the frames of medicine. Moreover, potential parents are engrossed in the medicalisation of life itself when one considers some of the choices that are being made in relation to genetics, disability and parenting. Take, for instance, recent attempts by Deaf parents to have Deaf children or the more commonplace incidents of would-be parents testing for the presence of impairments such as Down syndrome. For Newell (2006: 276) parental screening for impairment is never a value-neutral ethical dilemma: it is a decision that is inherently politicised, framed and structured by a dominant community that values non-disabled lives and places disabled lives in the ‘risk category of humanity’. Newell (2006: 277) understands genetics as an ‘essential replicator of not just reductionist thought, but the entire worldview associated with modern medicine including of course the notion that there are good genes and bad genes’. While I take issue with Newell’s collapsing of medicine into medicalisation, the latter process he describes references the ways in which valued lives – and lives that evoke value – blur concepts of humanity, health and worth. Medicalisation is, as we shall see in the next chapter, intertwined with other grand narratives of ableism and neoliberalism. In those industries that sell the promise of technoscientific and medical solutions – such as the pharmacological and prosthetic industries – disability occupies a privileged position: it is a key object of these interventions. Paradoxically, for Sothern (2007: 146), disability ‘is the category that neoliberal figurations of biomedicine promise to eliminate even while neoliberalism invests in the proliferation of categories of disability as one of its founding moves’. Disability is an inconvenience to rectify and problem requiring elimination. Disability holds a bifurcated identity in the realms of medicalisation: it is something to be increasingly diagnosed (made ever more present) and eradicated (requiring erasure).

If, as Michalko (2002) asserts, disability is called to mind as a problem then – like any dilemma – a solution must be found. Human beings tend not to like uncertainty. It makes us feel uncomfortable. It makes some of us seek certainty in pretty bizarre and, now and then, dangerous places. Goggin and Newell (2005) and Newell (2006) denote ways in which medicine, culture and the media intersect:

1. The tragic life of an individual or several devalued individuals is portrayed in a way designed to elicit maximum effect;
2. A technology is portrayed as delivering a person from disability, provided that society legalises, funds, or embraces such a solution;
3. Securing the technology means that disability has then been ‘dealt with’; after deploying such rhetoric there is to be no more appeal to emotion, and the solution lies in the rational pursuit of the technology identified in step 2 (effectively there is only one, inexorable logical step);
4. Disability as a political issue goes away, until next time it is needed in the powerful politics of media representation.

(Goggin and Newell, 2005)

This merging of medicine and technology – biotechnology – demonstrates one aspect of medicalisation. Medicine is marketed as giving and improving life; plotting interventions along a continuum ranging from improvement, to prostheses, to rehabilitation through to cure. The global citizen, depending upon how much they can access biotechnology, will perceive themselves and others through the matrix of biotechnological practices of the international marketplace. As Mills’s (2012) doctoral work demonstrated, the detection and pharmacological treatment of mental illness is big business; burrowing away just as easily in the metropolis of London as it is in the rural locations of Northern India. Biotechnology offers life but also takes certain lives away. We are witnessing a blurring of the ambitions of the medical establishment, the economic ambitions of nation states and the insatiable privatised demand for profits of globalised drug and medical corporations.

Studies of disablism and disability studies have emerged in response to this authoritative discourse of medicalisation. This discourse has been, according to Vandekinderen et al. (2013), myopic in terms of its interpretation of disability. It enhances the view, for example, that children with Down syndrome will behave in distinct, measurable ways as a direct consequence of their impairments. Medicalisation also has been historically predicated on a didactic monologue about bodies. So, for example, doctors rather than parents know best about the educational prognosis of children with Down syndrome. Disability studies pulls these monologues of medical disclosure into a space of what Myers (2004) defines as inter-subjectivity: where patients and professionals dialogue around the causes and experience of impairment and disability. This recognition that different stake-holders – in and outside medicine – always contest a medicalising discourse draws us into debates around public health, welfare systems and health insurance. As we shall see in later chapters, medicalisation, dis/ability and identity merge in complicated ways particularly in the current economic context of neoliberalism. The (post) modern global citizen is one increasingly more at home with the language – if perhaps not the promise – of medicine.

Campaigns around gene therapy or prosthetic design prompt debates about the rationalisation and justification of the biotechnological shaping of humanity. Many of us deploy a sceptical eye on ‘current biomedical practices, policies, inequities, and biases’ (Wahlert and Fiester, 2012: ii). This scepticism invites a reassessment of biomedicine’s objects (bodies or brains with their associated conditions, syndromes and illnesses) and subjects (sufferers, patients, recipients). Hence, following Hannabach (2007: 255), while bodily and cognitive processes are often described as ‘an unequivocally internal and personal process, the terms by which we understand our bodies are themselves social, and so our perception of our bodies and of other bodies are not entirely of our own making’. Disability studies is, in part, a response to what is being said. This has led to a marked shift away from disability as individual problem to disablism as socio-political concern. Ferguson and Nusbaum (2012: 72) contend that the term disability studies ‘should not be allowed to become little more than a synonym for special education or rehabilitation sciences’. Disability studies is not simply a reaction to the medicalisation and individualisation of disability but also an antidote.

Social models and disabling barriers: made in Britain

The social model of disability is arguably the most recognisable critical voice against medicalisation. Many trees have been felled to feed the countless publications that have been written about the social model. This book is not yet another text that will discuss the relative merits or downsides of the model. Were it my money you were spending on texts that capture the pros and cons of the model then I would plump for Oliver’s (1990) first edition of The Politics of Disablement and Shakespeare’s (2006) first edition of Disability Rights and Wrongs. Were I more focused on my own citation analysis and bank account then I would, of course, point you to Goodley’s (2011a) Disability Studies: An Interdisciplinary Introduction. The social model was written in concert with British activists as a corrective to the medicalisation and individualisation of disability. Texts by Barnes (1991), Oliver (1990) and Morris (1991) gave conceptual language to the politics of organisations such as the Union of the Physically Impaired Against Segregation (UPIAS, 1976).

The model was developed as a heuristic devise for mobilising around disability as a political category and provided a vocabulary for contesting the processes of disablement: social, economic and cultural barriers that prevent people with impairments from living a life like their non-impaired brothers and sisters. For Ferguson and Nusbaum (2012: 72) ‘the social model has become one of those umbrella terms – indeed, much like the term “disability studies” itself – that has a broad recognition and understanding’. For many of us engaged with the politics of disablement, the social model gave us our ‘aha moment’ or, more grandly following Zarb (1992), our ‘Road to Damascus’ experience. When as an undergraduate psychology student – pissed off with psychology and angry about the treatment of people with intellectual disabilities – the social model of disability gave me a new disability lexicon. The problematic lives of intellectual disabilities were not caused by intellectual disability: many problems of access, support, community participation and acceptance were problems of a disabling society that threatened the very existence of people who were cognitively different to the mainstream.

The social model perspective was and continues to be hugely inspirational. It is not melodramatic to say that the social model of disability has saved and continues to save lives. Intriguingly, the social model turned disability-as-impairment (a classic medicalising strategy) into disability-as-oppression (in line with the sociologically modernist blueprint of many a political movement). Impairment relates to an embodied difference in terms of the functioning of the body or brain. One lacks sight. Another might not walk. Others cannot think in ways normally understood as typical. Some will never reach intellectual levels valued by our knowledge economy. The point remains that people with impairments will often experience disablism (Thomas, 1999, 2007) and the social model seeks to penetrate disablism. Perhaps what is lost, however, is the idea of disability as an entity around which people orient themselves as an identity. An identity that might be celebrated as it disrupts norms and subverts values of society. But, we are moving into different territory here that we will pick up later on in the book. Suffice to say: the social model concerns itself with the real conditions of disablism: and these conditions are material, as real as stone, hard-hitting and potentially fatal.

Newcomers to British disability studies are often bewildered by key proponents’ steadfast fixation with the social model. Oliver and Barnes provide this declaration on the social model:

What began life as an aid to professional practice has been slaughtered on the altar of theory for not explaining everything about impairment and disability … so, please, no more books or PhD theses about it, no more arguments in the classrooms of consciousness raising and no more fights on the streets of activism. If it is any good, use it and share your gains with the rest of us; if it is useless don’t tell us so any more but invent something else.

(Oliver and Barnes, 2012a: 11)

If we are to accept the pretty obvious statement that disablism is a complex process requiring nuanced theoretical and political response then ending debate appears to be a rather worrying claim. Amusingly, like typical academics, Oliver and Barnes actually cannot resist taking on their critics in spite of calling for the end of debate (e.g. Oliver and Barnes, 2012b). Oliver (2009: 48–50) seeks to address and repel five criticisms typically levelled at the social model. First, the model does not deal adequately with the realities of impairment. He suggests that impairment is acknowledged but should not be grounded as the basis for forming social and political movements. Following in the tradition of C. Wright Mills (1959), impairment is a private matter (and not really that interesting) while disablism is a public concern (and therefore the real focus of disability theory and activism). Second, the model does not account for pain. Oliver suggests that pain is not simply a matter for disabled people and that such a personal bodily experience is not really a concern of sociological critique. Third, the model does not acknowledge links with race and gender. The counter-argument here, for Oliver, is this: were the social model put into practice more often then connected issues of racism and sexism would inevitably also be troubled. Fourth, the model gives only an inadequate social theory of disablement. But, social modellists, as Thomas (2007) defines them, never claimed to provide a totalising theory: the model is a heuristic device. Fifth, the model does not engage with cultural ideas of Othering around disability. For Oliver such concerns are immaterial in the face of real disabling material barriers.

This defence is well couched right up until the point when questions of theory and culture are sidelined. Let us be clear; Oliver and Barnes are no simple epistemologists: providing a model and nothing more. Their work can be characterised as a totalising commitment to historical materialism or a hardline radical structuralist approach to the study of disablism (see Goodley, 2011a, for an overview). As Oliver (2009: 89) argues:

My own theorising on disability is located in Marxist political economy … I would go further and argue that the social theory that underpins Marxist political economy has far greater transformative potential in eradicating the oppression that disabled people face in the world than the interactionist and functionalist theories.

Barnes and Mercer (2003) refuse to engage with poststructuralism’s irrelevant focus on culture and use of ‘obfuscating language’ (an ironic turn of phrase to use when complaining about complex language). My own belief is that historical materialist accounts of disablism offer indispensable insights into exploitative workings of capitalism. To deny these practices, particularly in today’s threatening economic times, would be suicidal. As Mawyer (2005: 62) argues, unless we recognise the contribution of a materialist critique of structural oppression and exploitation in capitalism, disability studies will ‘remain only a gesture and little more’. Yet, engaging with material conditions and, crucially, clarifying what we mean by materiality in what Hardt and Negri (2000) describe as a global world that has been subjected to postmodernisation, should not preclude us from looking outside the social model material register or simply sticking with a narrow theoretical agenda that portrays its offerings as the grand narrative. Instead, we need to ask ourselves what we mean by materiality and materialisation in a contemporary society where various nexus including immaterial/material, idealist/real, object/subject are being used to service the exclusion of disabled people.

For now, it is useful to wheel back and ask what have been the contributions of the materialist social modellists? To get a little Freudian for a moment, one begins to understand...