The challenges of thinking with and through disability in interdisciplinary research

In recent times, interdisciplinary research has become the poster child for academic study. As a precondition for “real” interdisciplinary collaboration, each collaborator must identify with one, or more, disciplinary position and ensure that this/these identification(s) remain visible in the collaborative process. To this end, the Humanity Under Duress Symposium created a space for a small number of researchers to gather together, in a cosy setting, to focus on the question: what does it mean to be human at a time of increasingly rapid social, economic, technological and political change? The organizers of the event took a few measures to facilitate discussion: papers were circulated beforehand, presentations were limited to brief provocations followed by a response from one other researcher before moving to an open discussion.

Disability Studies scholars have long been disappointed by interdisciplinary engagements. On the one hand, “[t]here is no doubt that disability studies have struggled for recognition from other transformative arenas such as feminism, critical race, Marxist and queer theory” (Goodley 2013). On the other hand, when disability is included in interdisciplinary debates, it is invoked in ways that we, as Critical Disability Studies academics, find deeply problematic. For example, when the lives of people with learning disabilities are referenced in interdisciplinary discussions of the human, too often, this happens in ways that question, or, even deny, the status of disabled people as human beings (See: Singer, 1996; McMahan, 1996). Writing from her perspective as a philosopher and a mother of a daughter with ‘a severe cognitive impairment’, Kittay (2009) suggests that debating what it means to be human, by questioning the humanity of people with cognitive impairments, is a form of epistemic violence.

Given this history, it felt refreshing to attend a symposium focused on questions of the human that were informed by a broad range of theories focused different sociological contexts. Presentations at the symposium drew on a range of theoretical resources from bio-politics to critical disability studies; from cultural studies of childhood to critical race theory; from anthropology to economics. Analytical frames were focused on a wide range of topics including: drug use, on-line gaming, welfare benefits, and death.

As the symposium progressed, however, each of us began to reflect. Katherine began to question what happens when learning disability, or cognitive impairment, is de-centred in radical theorising about questions of the human in sociological studies. Yvonne ruminated over the responsibility the researcher holds regarding her thoughts. Can research and theorization on the question what it means to be human be conceived as l’art pour l’art? Is it legitimate to enter a thought experiment without considering where it could lead – just to see where it goes? John Rawls’ (1971) theory of justice and his thought experiment -the famous ‘veil of ignorance’-came to Antonios’ mind, where disability, once more, was left out.

There was a fascinating array of sociological thought and disciplinary expertise in the room engaging with questions of the human. Writing from anthropology, Jamie Coates helpfully drew attention to ‘the human’ as a relatively recent term which didn’t appear until 1755 when Denis Diderot defined it as ‘the unique term from which one has to begin and to which one has to return’ (Rees 2018: 36 cited in Coates, 2019: 1). He cited Wynter (2007) to challenge the human as a biocentric and eurocentric preoccupation of the (post) colonial era (Coates, 2019). Coates used a cross-cultural account, drawing on Japanese language and culture, to suggest that the language of ‘personhood’ has wider cross-cultural potential than the ‘human’.

Coates proposed that the language of ‘the person’ might simultaneously allow for the biological, psychological and the sociological and open up the way for a shift from a focus on the individual to the ‘’dividual’ (Strathern, 1988 cited in Coates, 2019: 3). However, this shift towards personhood, also drew Coates to the work of Peter Singer. In Singer’s advocacy for a move away from specie-centric humanism to ‘personism’, he has concluded that the moral worth of some people with learning disabilities is less than that of some higher order apes (Singer,1996).

A failure to pay attention to the implications of such theorizing for the lives of people with learning disabilities allows Tooley (1976 cited in Coates, 2019: 2) to conceive of ‘persons’ as ‘a being capable of desiring to continue as a subject of experience’ without being confronted with the implicit ableism within the statement. This form of theorizing has the potential to relegate people with learning disabilities to the category of ‘human nonperson’ (Kittay, 2009).

Sociological theory regularly attends to the raced, sexed, gendered, classed and colonial aspects of socio-cultural life, and yet disability is still excluded from such theorizing, as Dan Goodley reminded us (2019). Functionalist perspectives of disability (see Parson’s (1951) ‘sick role’ for instance) are still pervasive in sociological thought, despite disability activists’ and theorists’ push for the ‘sociologisation’ of disability (see e.g. social model (Oliver, 1990).

As an economist, Nick Gane argued in his presentation that: ‘clearly human beings have the capacity to think and act economically’. He carefully mediated this claim with the view that ‘this does not mean that their existence is or should be defined by these capacities’ (Gane, 2019) but having a capacity to ‘think and act economically’, as a foundational tenet of what it means to be human, inevitably pushes many people with learning disabilities to the margins.

In his fascinating and challenging presentation, Atkinson (2019) invoked the ‘murder box’ to think about the human and the fulfilment of desire. He described the ‘murder box’ as ‘the way that particularly screen-human interfaces generate the possibility for interactions that denude the humanity of those we encounter’ (Atkinson, 2019:2). Atkinson describes online games, pornography and sex tourism as spaces for desires to be satisfied even when this satisfaction may be harmful to others. The fulfilment of these desires ‘requires some suppression of common experience and identity as humans’ (Atkinson, 2019: 2). And yet, while Atkinson’s account of the murder box might allow us to believe that murder boxes exist in online or faraway places, paying attention to the lived experiences of people with learning disabilities demands a recognition of the existence of ‘the murder box’ in our local communities. The scandals surrounding the abuse of people with learning disabilities at Winterbourne View (Kenyon and Chapman, 2011) and, more recently, Whorlton Hall (Davies & Plomin, 2019), reveal murder boxes in our midst. Unspeakable acts of violence are carried out in ‘care homes’ for disabled people, hidden and out of view, to fulfil an individual’s desire to humiliate and harm people who have been relegated to the category of ‘human nonperson’.

The violence of disablism (Goodley and Runswick-Cole, 2011) and the politics of resentment against disabled people (Hughes, 2015) grow stronger everyday, with more ‘scandals’ being revealed. And this, in a wider political context in which there is little political will to address cultural and systemic causes of the creation and tolerance of such murder boxes (NHS England, 2014; 2017).

Crucially, Lesnik-Oberstein (2019) persistently reminded attendees at the symposium to consider whether humanity has always been under duress. While she invoked attendees to remember post-holocaust history in their considerations, it is worth remembering that disabled people were among the first to be systematically murdered by the Nazi state.

How do historical legacies change the responsibility of the researcher? Can we really just “try and see” what happens when we collapse the human category after Auschwitz and after Hadamar/T4? The ivory tower of knowledge production is not detached from current political power balances. Those currents include smear media campaigns (Runswick-Cole & Goodley 2015), “hate crime” violence enacted to keep people with disabilities in their inferior social position (Balderston 2013) and punitive welfare reform that pushes people with disabilities towards suicide (Mills 2018). Postmodern tendencies to accept ambivalence and contingency make a revalidation of disabled subjectivity thinkable. However, Bill Hughes (2002) reminds us that contingency probably is not a strong drive for cultural change towards inclusion.

Finally, we want to be clear that we are not arguing that the lived experiences of disabled people be taken up as some sort of ‘canary down the mine’ of sociological thinking. We are not suggesting that we must theorize with and through disability first in order to think through the wider implications for ‘non-disabled’ others. This approach positions disabled people as exotic others with the risk of pushing them further to the margins of humanity. Rather, we are urging would-be social theorists always to think intersectionally – to think with and through class, race, sex, gender, poverty, (post)colonialism and disability. Rosi Braidotti reveals the idea of the human as fiction that has always excluded “his many Others” (Braidotti 2003). If we want to crip the human ideal and seek out productive alternatives, all those “non-normative” bodies and minds are to be understood as an opportunity to rethink values (Goodley, Lawthom & Runswick-Cole 2014).

Thinking intersectionally with disability is the challenge, and opportunity, for everyone engaged in thinking about what it means to be human.

References

Atkinson, R. (2019) The murder box – a trope for inhumanity. Paper presented at the Humanity Under Duress Symposium, The University of Sheffield, 20th -21st June, 2019.

Balderston, S. (2013) Victimized Again? Intersectionality and Injustice in Disabled Women’s Lives after Hate Crime and Rape, Advances in Gender Research, 18A: 17-51.

Braidotti, R. (2003) Becoming woman, or sexual difference revisited, Theory, Culture & Society, 20(3): 43-64.

Coates, J. (2019) The need for personhood in times of change: a cross cultural perspective. Paper presented at the Humanity Under Duress Symposium, The University of Sheffield, 20th -21st June, 2019.

Davies, O. (Reporter) & Plomin, J. (Producer) (2019) Under Cover Hospital Abuse Scandal, Panorama, BBC, UK.

Doharty, N. and Gholami, R. Racialising Humanity. Paper presented at the Humanity Under Duress Symposium, The University of Sheffield, 20th -21st June, 2019.

Gane, N. (2019) The economic capture of the human. Paper presented at the Humanity Under Duress Symposium, The University of Sheffield, 20th -21st June, 2019.

Goodley, D. (2013) Dis/entangling critical disability studies, Disability & Society, 28(5): 631–44.

Goodley, D. (2019) Desiring new humanisms? Paper presented at the Humanity Under Duress Symposium, The University of Sheffield, 20th -21st June, 2019.

Goodley, D. and Runswick-Cole, K. (2011). The violence of disablism. Sociology of Health and Illness, 33(4), 602-617.

Goodley, D., Lawthom, R. and Runswick, K. (2014) Posthuman disability studies, Subjectivity, 7: 342 – 361.

Hughes, B. (2002) Bauman’s Strangers: Impairment and the invalidation of disabled people in modern and post-modern cultures, Disability & Society, 17 (5): 571–84.

Hughes, B. (2015). Disabled people as counterfeit citizens: the politics of resentment past and present. Disability & Society, 30(7): 991-1004.

Oliver, M. (1990). The politics of Disablement. Hampshire and London: McMillan Education LTD.
Kenyon, P. (Reporter) & Chapman, M. (Director) (2011) Under Cover Care: The Abuse Exposed, Panorama, BBC, UK.

Kittay, E.F. (2009) The personal is philosophical is political : a philosopher and a mother of a cognitively disabled person sends notes from the battlefield, Metaphilosophy, 40(3-4): 0026-1068.

McMahan, J. (1996) ‘Cognitive Disability, Misfortune, and Justice. Philosophy and Public Affairs, 25(1):3–35.

Mills, C. (2017) ‘Dead people don’t claim’: A psychopolitical autopsy of UK austerity suicides. Critical Social Policy, 38(2): 302–22.
NHS England, Public Health England, Health Education England, Monitor, Care Quality Commission, NHS Trust Development Authority (2014) Five Year Forward View.http://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf
NHS England (2017) Learning Disabilities Mortality Review Programme Annual Report (2017). Available online at: https://www.hqip.org.uk/wp-content/uploads/2018/05/LeDeR-annual-report-2016-2017-Final-6.pdf

Parsons, T. (1951). The social system. London: Routledge and Kegan Paul.

Singer, P. (1996) Rethinking Life and Death: The Collapse of Our Traditional Ethics. New York: Macmillan

Rawls, J. (1971). A theory of Justice. United States of America: Harvard University Press.

Runswick-Cole, K. and Goodley, D. (2015) DisPovertyPorn: Benefits Street and the dis/ability paradox. Disability & Society, 30(4): 645–49.

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