Professor Dan Goodley is based at the iHuman institute at the University of Sheffield. His latest book, "Disability and Other Human Questions" (Emerald Publishing) argues that the study of disability is of great importance in its own right, but also has much to offer us all in considering what it means to be human in the 21st Century.
As a non-disabled person, how did you come to disability studies and to write this book?
I came to disability studies academically, personally and politically. So, academically, in 1990s ‘Madchester’, I became majorly disenchanted with my studies in psychology. When disability did get mentioned in my course it tended to be in terms of abnormal psychology; so disabled people appeared as deficient objects of study. I found an antidote to this dehumanising literature by reading outside of psychology; especially the contributions of disabled activists and disabled sociologists. These writers produced a new way of thinking about disability. Essentially, they argued, society disables people. This was the beginning of the social model of disability: which was revolutionary to me in many ways. And I wanted the book to capture some of the magnificence of this new way of thinking.
Personally, I came to disability studies because disability was already very familiar to me. Both my Grandad and Grandmother were disabled; not least by the patronising, dismissive and belittling reactions of other people to their physical and sensory impairments. I wanted to share the proposition that disability is a phenomenon felt and lived by disabled people and their (non-disabled) family members, friends and allies.
Politically, I was drawn to disability studies because many of the left-leaning organisations and socialist ideas I was drawn to often ignored the activism of disabled people. This is tragic when one thinks about the revolutionary impact of disabled people’s politics on contemporary life. For example, there would be no anti-discriminatory laws without disabled people’s resistance. Hence, my coming to disability studies as a non-disabled person confirmed some of my own experiences with disability but also provided opportunities to re-examine my own beliefs and prejudices. I set out to write the book in an accessible way. My imagined audience were not academics, nor necessarily readers who were already aware of disability studies.
You write that non-disabled people "have a moral obligation to countenance how they relate to the phenomenon of disability".
Any study of disability has to begin with the accounts and aspirations of disabled people. This, for me, is a non-negotiable starting point. If we rely on non-disabled people to start any conversation about disability then we are in big trouble! Many commonsensical, taken-for-granted, influential and often pernicious ideas about disability have been peddled by non-disabled authorities (such as religious leaders, psychologists and medics) who have spoken of disability as an object of curiosity or cure. So it is essential that we start with a counter-narrative: how disabled people understand and celebrate disability.
Having said all that, it is clear to me that non-disabled people have a responsibility to understand their own role in the lives of disabled people. If we accept the view that social change requires cooperation and solidarity, and that knowledge systems generated around disability can oppress or empower, then we need to ask; how do non-disabled people support the aspirations of disabled people? Non-disabled people are, I feel, obliged to unpack some of the often dangerous, negative and limiting understandings that we implicitly hold in relation to disabled people. Non-disabled people need to subject their own belief systems to some serious critique. But, we should also remember that non-disabled parents, siblings, friends and comrades play a big part in the lives of disabled people. We have to be careful not to paint simplistic caricatures of non-disabled and non-disabled people.
What impact has more than a decade of austerity had on disabled people, and how might this be reversed?
A devastating impact. Disabled people endured 10 years of austerity and then were hit by the pandemic. Welfare states retracted, key services disappeared, crucial third sector organisations lost their funding and health and social care was described as being in crisis. And this was all pre-Covid. The pandemic has magnified the chaos already caused by a misguided adherence to austerity. In 2021, as the UK government and supranational organisations like the United Nations embrace the rhetoric of ‘Building Back Better’, disabled people should be placed at the centre of any policies, programmes or investments in relation to welfare, education and work. There’s no doubt that even the private sector recognises the merits of inclusive and accessible philosophies and practices: we often read about diversity promoting productivity. So we really do have an opportunity, perhaps a once in a lifetime chance, to consider how we reclaim a sense of support and community. This means contesting market-based approaches to service provision and regenerating our towns and cities in ways that are accessible to all our citizens. Could the post-Covid era provide us with an inclusive reset? Or are we going to repeat our dehumanising failings of the past?
Can you tell us about your research at iHuman at the University of Sheffield?
iHuman brings together researchers from across the human and social sciences, arts and humanities to address the question: What does it mean to be human in the 21st century? I’m co-director of this institute with my friend and colleague Professor Paul Martin. There are two areas of research that support us in addressing this question of the human. The first is Science and Technology Studies, which unpacks the ways in which bodies, identities and social groups are shaped by science, knowledge, biosciences, medicine, expertise, AI and robotics. The second is Critical Disability Studies, which considers disability not as a passive object of study but as a driving subject of research. In this sense, then, we want to consider the ways in which disability should always be foregrounded in any conceptualisation of the human.
Has the Covid-19 pandemic made the general population more sensitive towards issues of disability?
I’m split on this really. I flip between feelings of hope and despair on an hourly basis. I imagine I’m not alone in these feelings during lockdown. I really hope that people are more aware of the challenges that the pandemic has posed to people living in poverty. Many disabled people live in accessible homes, are excluded from places of work and education, more likely to be shielding and live on the periphery of our communities. Poor people have been disproportionately affected by the pandemic and this has been recognised by certain sections of the population. At the same time, though, the figures do not lie: people with learning disabilities, for example, are six times more likely to die of Covid-19 than their non-disabled counterparts. And the lack of interventions on the early impact of the pandemic in care homes is a national disgrace. So the jury is out for me really; how is it that we got ourselves into a situation where disabled people, yet again, are treated like second-class citizens?
In what ways does disability open up new possibilities for rethinking desire?
I think in two ways. Let’s take a typical understanding of desire. Most of us live by a model of desire that relates to wanting those things that we lack. Disabled people have agitated and organised around the discourse of human rights to demand access to education, work and their communities. So this is a well-worn story of desire and one that has the potential to include disabled people within its narrative. Another take upon desire relates to a yearning for connecting with one another. So desire is about a deep human drive for entanglement, community and interdependence. One historical narrative of disability would recognise that disabled people have always innovated and enjoyed deep connections with other humans (support and care relationships), non-human animals (for guidance and assistance) and technologies (from walking sticks to high tech smart-homes). Disability is an ideal place from which to think again about what and how we desire.
You're an academic, and your book draws on two decades of disability studies research, but it also uses scenes that feel almost novelistic, including a chaotic train trip with a group of people with intellectual disabilities, and also personal accounts about your own family. Why was this important to the book?
The train trip story you mention hopefully captures the power of stories to really grapple with some big intellectual questions. I have over 20 years of my own stories to draw on. I’m a big fan of the writer/director Shane Meadows and the electro-punk band Sleaford Mods. I love them as their storytelling is so expansive, improvised, often chaotic and takes place in the East Midlands (which is where I grew up). Their stories always get under my skin and stick in my head. In writing my book I was inspired to use some of my own life stories as entry points into considerations of ethical, theoretical and political questions. I’m not saying I hit the soaring levels of Meadows or the Mods! But I have had some tweets and feedback from readers who said they really appreciated the humanity depicted in the narratives. When my stories work well then I think they give life to characters (who are living with disability) and reveal some of the social and historical horizons that landscape those people. Academics would do well to draw inspiration from storytellers outside of our usual academic communities.
What are TABS and why is the term used?
TABs is a popular and playful term used in the disability community to refer to the ‘Temporarily Able-bodied’. It is deployed to remind non-disabled people that their own able-bodied and mindedness is precarious and that many of us will experience some kind of disability in our lives. While it’s useful, some disabled activists reject the use of TAB because it draws on some rather antiquated notions of the ‘able-bodied’. Disability studies scholars tend to use terms such as ‘disabled people’ and ‘non-disabled people’; so placing disability front and centre of categorisation. My view is that ‘TAB’ works well when it promotes a moment of self-reflection; illuminating the myth of being able.
