COVID-19, Higher Education and Disability – a series of four blogs on lessons to be learned from the current crisis, Disability Studies, and disabled people.

Four: 

Although these posts may feel like a plea for inclusion (it is in part), it is also a reminder that our arguments for advancements in knowledge and new epistemological paradigms have been ignored for far too long, a further disavowal which has had costs for everyone. Disabled people have been experts in self-isolation for a long time and many of us have been endowed with the creativity and flexibility to work, strive and thrive where others accept the hierarchies and barriers of normalcy. Simi Linton (1998) and others have argued, that understandings arising from Disability Studies should have had a central place in the humanities (and other disciplines) rather than be accorded a ‘special interest’ status. Yet as Bérubé (in Linton, 1998) has suggested, most academics tend to dismiss topics of impairment and disability as having little or nothing to do with them.

This is perhaps particularly revealing and shocking within sociology where there is a pressing need, especially in the current context, to recall the early eugenic thinking among sociologists. Francis Galton presented his eugenic aims at the first meeting of the Royal Sociological Society in 1904 and there is clear evidence of derogatory perceptions of disability in early US sociological meetings (Thomas and Stevens, 2016). There has not yet been a similar analysis in relation to the BSA annual meetings though we suspect a similar and depressing, picture particularly given disability was not considered a sociological topic until the 1980s. For us, as convenors of a Disability Study group that should have been in existence for decades rather than years, it has been frustrating to know that many sociologists have long failed to see the epistemological and methodological value disabled people have brought to the discipline. Indeed, it would seem to be a better strategy for a disabled academic to renounce their disabled identity to optimise their academic reputation. SimilarIy, we suspect that many disabled academics remain silent about the ways in which the academy deepens the wounds inflicted by the ‘hidden injuries of neoliberal academia’ (Gill, 2020), lest the flimsy opportunities they are granted are removed. In November 2019, Professor Mary Beard wrote a tweet asking how many hours most academics worked, estimating a hundred hours a week for herself. Although some academics may not have to work so many hours, there is little doubt that such cultural expectations routinely screen out those who are assumed, a priori, to lack the physical stamina to work every waking hour. A more humane culture would raise questions about the costs of such harsh conditions, for disabled and non-disabled people, rather than utilising this ethos to disqualify us.

Disabled people are used to begging; we are given few options to do otherwise. As Frances Ryan has pointed out in relation to the impacts of COVID-19 on all people with impairments, disabled people have been driven to seek validation for their lives on twitter and other media (Ryan, 2020). Many disabled people’s lives have been lost in the last decade[i] ,  figures exacerbated through the devaluation of disabled people’s lives via government policy. Currently, many of us are working out how to potentially plead for our lives, often through appeals based on our contributions to society. There is a very real ‘battle’ being fought against culling those who score high on the fragility scale. There is an overwhelming sense that many of the collective and individual responses to the fears disabled people face emanates from a need to counter the dehumanisation of being lost as a worthless drop in a vast ocean of those known only by their possession of ‘underlying conditions’[ii]. Potential acts of resistance in disabled spaces include the sharing of ideas on hospital passports to communicate our human worth if we are admitted to hospital. But, as much as we may have been written off by many as unfortunate victims, the act of providing a rationale for saving our lives speaks volumes about the ways in which we have been treated by society, generating realistic, dread-filled expectations for many disabled people.  As Eva Feder Kittay (2020) says, ‘Rationing and triage protocols aggravate an already stomach-churning fear. For even in the absence of overt discrimination, we have to be concerned about the many ways in which discrimination is baked into standard practices and protocols. Disability activists and organisations have al-ready identified some of the poison pills in seemingly rational recommendations’.

Similarly, Frances Ryan has recently argued that ‘Disabled people, like all minorities, are only fully human when we are permitted to be as wonderfully average as anyone else’ (2020, para 12). But academic life doesn’t celebrate the average either, far from it; as Dolmage argues, it ‘valorises perfection’ in both students and staff (2017, p248). Whilst this may seem axiomatic and desirable to most, the terms on which notions of perfection are constructed are largely in eugenic terms, both implicitly and explicitly (Dolmage, 2017); for example, the ideal or troublesome student and the normative or errant career trajectory.  Further, the current crisis, initial government response and the response of universities re-exposes the conceptualisation of  disabled (or ill) people as ‘bare life’, as people ‘who live[s] in a state of exception; someone who is not simply outside the law and indifferent to it, but who has instead been abandoned by the law’ (Reeve, 2009, p1, following Agamben, 1998).  The marginalised position of disabled people in the academy already serves to perpetuate patterns and ideas of exceptionality which invariably renders their voices silent within HE. Yet again.  As Eva Feder Kittay (2020) says ‘the disabled rarely are “in the room where it happens” and rarely author the protocols. They neither determine whose benefits are served, what the benefits are, and how and who does the calculations’.

There seems to be little doubt that HE will ‘open back up for business as usual’ (Gambuto, 2020), with the same old hierarchies and expectations grafted onto an unpredictable new landscape. Who will tell disabled people’s stories? How can academic life build academic knowledge from an increasingly narrow range of epistemological approaches which, as so graphically illustrated in recent months, privilege human production over human life?

As sociologists we believe we should be resisting the overwhelming call to return to ‘normalcy’. As Gambuto (2020, para.4) states, ‘What the trauma has shown us, though, cannot be unseen’. The crises of contemporary life have become ordinary for us, albeit to varying degrees. The evidence is everywhere; from the rapid changes to the skies, the environment, to the patterns we can easily discern in the death toll, alongside the transformations of hospitals to ‘war zones’ as killing fields for undervalued workers who could easily have been protected, the collapse of businesses, new working patterns, renegotiated family relationships, and the unavoidable knowledge of our utter reliance on those who are supposedly on the bottom rungs of society whose exploitation plight we so carelessly disregard.

To continue with the ‘cruel optimism’ (Berlant, 2011) of current routes to success in academic life and a belief in the wider aspirational values of neoliberal society hurts and impoverishes us all in the end. Strains of the near silence and limited resistance to early eugenic thinking in sociology identified by Gerschick and Dalton Stevens (2017) remain in contemporary sociology. We set up the BSA Disability Studies group (only 8 years ago) because disability studies had been largely disregarded as, at best, a ‘special interest’ activity throughout the history of sociology. We urge you to reconsider the importance of our voices and our place within sociology as something which will enhance the discipline, our sociological imaginations and the lives of all.

References

Agamben, G. (1998) Homo Sacer: Sovereign Power and Bare Life, trans. D. Heller-Roazen, Stanford, CA: Stanford University Press.

Berlant, L (2011) Cruel Optimism Duke University Press

Bulman, M (2019) More than 17,000 sick and disabled people have died while waiting for welfare benefits, figures show, in The Independent, 14 January 2019, [Accessed 12 April 2020]

Gambuto, J.V (2010) Prepare for the ultimate gaslighting, in Medium, Forge, [ Accesses 13 April 2020]

Gerschick, T.J. and Dalton Stevens, J. (2016) Invisibility, Visibility, Vilification, and Near Silence: The Framing of Disability in the Early Years of the American Sociological Society, in Sociology Looking at Disability: What Did We Know and When Did We Know it. Emerald group Publishing Limited

Gill, R (2009) Breaking the silence: the hidden injuries of neoliberal academia, in Flood,R. & Gill,R. (Eds.) Secrecy and Silence in the Research Process: Feminist Reflections. London: Routledge

Kittay, E. F (2020) Personal communication

Linton, S (1998) Claiming Disability; Knowledge and Identity New York University Press

Reeve, D (200 Biopolitics and bare life: Does the impaired body provide contemporary examples of homo sacer?’, in K. Kristiansen, S. Vehmas and T. Shakespeare (eds) Arguing about Disability: Philosophical Perspectives, London: Routledge . 203-217.

Ryan, F (2020) It is not only coronavirus that risks infecting society – our prejudices do, too, in The Guardian, 9 April, [Accessed 12 April 2020)

Salman, S (2015) Learning disabled people die because they receive less good care, in The Guardian, 24 March,   [Accessed 13 April 2020)

Notes

[i] Bulman (2013) stated that 17000 disabled people had died waiting for benefits since 2013, for example. It has been estimated that there are 1200 ‘preventable’ or ‘avoidable’ deaths a year amongst people with learning disabilities (Salman, quoting MENCAP statistics).

[ii] As valuable as this can be in reassuring people that they are not facing an imminent ‘end of days’, this also seems to act as mirroring of disabled people as the ‘special case’ opposed to the so-called norm

Acknowledgement:  Thank you to the administrators and group participants in ‘The Bunker’, especially Dennis Queen. The Bunker is a social media group who have supported one another in the current crisis.