Disability and Other Human Questions

Dan Goodley

• Publisher: Emerald Publishing Limited
• Year: 2020
• ISBN:
  9781839827068
• Topic: Social Sciences
• Subtopic: Disabilities in Sociology
• Index: Social Sciences

DAN GOODLEY draws on two decades of research and writing and weaves personal stories, scholarly literature, social media and other cultural narratives together with concepts from the interdisciplinary field of disability studies. His argument is simple: disability invites great insight into the wider project of understanding the human condition. Goodley 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. Chapters address questions such as 'who's allowed to be human?'; 'are human beings dependent?'; and 'what does it mean to be human in the digital age?' and respond to these questions in ways that get us thinking about how we might productively engage with, listen to and understand one another.

1

WHAT BRINGS US TO DISABILITY AND OTHER HUMAN QUESTIONS?

One comes to disability studies for numerous reasons. No one account is the same. And one person's narrative of engaging with disability studies can be told in many different ways; depending on whom one is trying to impress. Why should we contemplate disability and other human questions? If disability studies is a community of writers, political activists and artists, then what brings us here? This question gives away as much as it demands. This question says something about the intentions and aspirations of those that study disability. This question is one commonly asked in feminist, queer, black, working class, trans and other kinds of radical scholarship that exist as a consequence of oppression and are developed as responses.

Now, I write as an academic. This is a job title I have held for over 20 years. Academics are notoriously loose in their alliances and fleeting in their affiliations. Some move like butterflies from theory to theory. Others are like cuckoos, taking over another's home and making it their own. Others are stalwarts in their place of residence: stubbornly sticking to what they (think they) know. Some academics have passionate attachments to particular theories (or ways of thinking about the world). Others fall into methodolatry – a put-down term coined by the American sociologist C. Wright Mills (1959) – to describe those commonplace academics who uncritically worship and slavishly commit to their chosen methodological persuasion (whether it be the experiment or the confessional interview). Others come to disciplines, fields and communities of knowledge-making (sometimes called paradigms) because they are really pissed off; because they feel injustice and they want to do something about it. Others fall into things by chance. Some are reluctantly pulled into fields of enquiry. And many others find solace in communities simply because they share common values with one another. Looking back I realise that I was ready for disability studies. And this might be explained in terms of my biography, my training in psychology and my politics. But I also think my story captures a common narrative of why many might find themselves in the world of disability studies. So, I want to personalize a response to the question of being in disability studies mindful of the more collective engagement with this field of enquiry by many people over the last couple of decades.

FAMILY

Disability studies resonated with my experiences of disability and family. Let me give you a little from my own backstory.

HODGE

My grandfather experienced a stroke that had a huge impact on his speech. He was a central part of the first 13 years of my life. I only ever knew him with his distinctive style of talk. And his voice – and our relationship – was going to play a big part in how I came to engage with disability and society. I remember total strangers mocking his voice. A shopkeeper – in a newsagents in North Wales – shouting loudly into his face as he was sure my Grandad was deaf (ironically, though he wasn't, his wife, my Grandmother, was). I watched family members struggling to understand him. There was the time when we sat on a wall eating fish and chips by the harbour front in Whitby (on England's North West coast) and a nearby group of teenage boys mimicked his speech. To me he was speaking normally. I knew no different. He was always Grandad or ‘Hodge’ (short for Horace). Full name: Horace Eugene Goodley. And he had, as I came to learn later, a ‘severe speech impediment’. Ah, the totalising language of medicine. Now, curiously, my comprehension of his chat was superior to that of many in our family. I recall a wet morning holed up in his caravan in Scarborough in British summer time. We were sharing a read of a tabloid newspaper's sports back pages. In the UK the back page is invariably centred around football. I noticed how my grandfather's eyes lingered over the image of Graham Souness: the self-pronounced hard man and midfield leader of the invincible Liverpool Football team (apart from between 1979 and 1980 when Nottingham Forest were the champions of Europe).

‘Fucking bully bastard’ my grandfather pronounced.

We laughed aloud.

‘Fucking bullying bastard Souness’ he repeated.

My dad, who was sitting across from us, asked my grandfather what he had just said.

‘Nothing’. ‘Nothing’.

I recall the twinkle in Hodge's eyes. His knowing wink. Our shared secret.

Of course there was more to him than his unusual speech. When camping on holidays he would take his daily morning wash in the campfield. Whatever the weather (and it was often cold and drizzly during a Northern English summer) he would strip off his shirt before neatly folding and draping it over the open passenger door of the family car. With his impressive torso on full show – lean, muscular, strong core – he would ladle out hot water with his huge hands from a plastic bowl borrowed from the caravan kitchenette and lather himself clean with a bar of soap. His hands were often commented upon. They were worker's hands. Perfectly shaped for – or perhaps misshaped by – his time working in the Nottinghamshire coal mines. A job that my own father followed him into.

People used to say Hodge had the look of the American actor Burt Lancaster. And for 17 years Hodge had been in the British Army – some of these during war time – experiences he never really liked to share with his family. He had told us about exotic locations such as Singapore, Australia, North America, Canada and India. And he had documented these travels with tattoos inked over his shoulders and arms. He was, to me, an exotic creature. But to strangers in the street he was an inarticulate old man. An object of confusion, ignorance or ridicule. These adverse responses to my Grandad killed me inside. My feelings of anger and upset are still there with me now, four decades later. The sense of injustice lingers. I can recall the patronising facial expressions of the shopkeeper. The black training shoes of one of the teenage boys (they were ADIDAS). And I can picture my Grandad's shame and humiliation: etched on his handsome features. I can also remember how great those fish and chips tasted on that day in Whitby. And this is but one family story of disability.

My sense is that many of us come to disability studies because we have experienced similar emotions and experiences to those I have described above. Disability appears in the world and makes a difference. This difference that disability makes – a phrase I have borrowed from the disability studies scholar Rod Michalko (2002) – is a difference often understood in terms of difficulty, stigma and social harm. Disability is oftentimes constituted in our social relationships as a problem of individual functioning and a disrupter of social conventions. Disability studies, then, exists as a field of ideas, concepts, theories and debates that sit with disability to try to make sense of our relationships with the phenomenon of disability. We might be brought to disability studies – or bring ourselves and our stories to disability studies – to make sense of how disability becomes constituted as a problem and, crucially, how we feel and contemplate disability. We might come to studies of disability because of feelings of anger, sadness or confusion. We might be searching for relief, clarity, hope or alliance. And, crucially, many disabled people come to disability studies because of their own everyday experiences of being cast as a problem by the societies and cultures that they inhabit. Significantly, disabled scholars, writers, theorists, researchers, practitioners and artists came to disability studies and, as a consequence, made disability studies through their actions. Some did not know they were doing disability studies. Others were more clear about their presence from the outset and were soon to name their location as one entitled as disability studies. There would, of course, be no disability studies without disabled people. And there could never be disability studies without disabled people.

The late Mike Oliver (1990), the first Professor of Disability Studies in Britain, adopted the terminology of another pioneering disabled activist – the Italian Marxist philosopher António Gramsci – to describe disabled activists as ‘organic intellectuals’. I still hold this view that disability studies are grounded in the accounts and aspirations of disabled people as they work through their disability stories. I find it impossible to conceive of disability studies without disabled organic intellectuals. Now, my stories of disability reflect my social position, my status and my biography. One might describe my stories as those of a white, middle aged, straight, British (therefore colonial) cis-male, working-class-born-now-middle-class breeder who has never received any disability diagnosis. Some might argue that my disability stories are second hand. And, to some extent, I would agree with this evaluation. You are reading my familial story. My recollections dominate the telling. And if stories of disability are dominated by people like me then I think we have a problem. It is precisely because of the ubiquitous nature of disability in our life stories that people already have much to story about disability. Sometimes when people announce that they have much to say about a phenomenon – the latest global news story, a Facebook status, an influencer's Instagram recent, a controversial Tweet – they/we risk confusing this with expertise: an authoritative view on the matters at hand. It is important to acknowledge my status and position. Some readers will describe me as occupying a position of white-able-bodied-and-minded privilege. And I would accept that I enjoy such a privileged position. Whenever I type my narrative I risk recreating what the Jamaican novelist and philosopher Sylvia Wynter (2003) defines as the white man's institutionalisation of himself in terms of himself as absolute being. And that is not a good look. Non-disabled people like me have much to do in order to think about their relationships to the phenomenon of disability and the lives and aspirations of disabled people. Too often, particular world views have been pushed by powerful non-disabled people that threaten to dominate the stories told of disability. I am thinking here of medics, politicians, priests, therapists, teachers, journalists, academics, screenwriters, song-writers, film-makers, curators and authors. Fresh stories of disability need to be recounted. And non-disabled people need to ponder the stories that they tell about disability as well – and more importantly – attending to disability stories recounted by disabled people. Finding oneself in disability studies can involve engaging anew with disability and the stories that we tell of disability. We all have our own accounts to tell of disability, but how often do we get these stories evaluated by others? An opportunity for critique is as good a reason as any to be in disability studies.

Hence, my stories should not be written off because they are only from one life and offered by one teller. Nor should they be dismissed because of my non-disabled status. My story of family and disability has much to say about participants of a given social and historical time and of the kinds of meaning making that were taking place around disability in those moments. While familial characters lurk around in the background of the narrative (like my Dad) and others take centre stage (as my Grandfather does), others populate what the French sociologist Daniel Bertaux (1981) describes as the wider socio-historical horizon of the narrative. The teenage boys and shopkeeper are living enactors of more nebulous cultural practices that we might define as ignorance, stigma and discrimination. Reducing my disability story to a descriptor that coins it to be just that of a white, cis-gendered male risks misrecognising the wider relational qualities of my story or indeed any story that is told of disability. Misdiagnosing my narrative as just a story of a non-disabled teller does a great disservice to the centrality of disability in my family. And it potential risks denigrating the powerful impact my Grandfather had on his own family's engagements with and understandings of disability. My point is that we all come to disability studies with innumerable stories of disability already lived, told and at times repressed as part of our personal biographies. Disability is, as David Mitchell and Sharon Synder (2000) remind us, ubiquitous. One reason for entering the fold of disability studies relates to subjecting this ubiquity to interrogation. Disability studies us to be inquisitive about our own disability stories.

While disabled people and their representative organizations have led the way in restorying of disability, we must not leave the non-disabled like me off the hook. It is entirely incumbent on all of us to subject our disability stories to analysis. And, I would assert, it is particularly the ontological duty (or personal, subjective and psychological priority) of non-disabled people to unpack their own understandings, conceptions, prejudices and troubles in relation to disability. Why? Because, quite simply, non-disabled people's disability stories have throughout history been powerfully influential and immeasurably problematic for disabled people. Some non-disabled people might presume that they are distanced from the lives of disabled people. Disability studies would firmly disagree with this viewpoint. Non-disabled people are, rightly or wrongly, central to the enveloping nature by which disability – and our understandings of disability – emerge in the world. The non-disabled amongst us have a moral obligation to countenance how they relate to the phenomenon of disability. And it is the telling of our stories that we will find our common humanity.

PSYCHOLOGY

I also came to disability studies as a recovering psychologist. I am only half joking. Thirty years ago I fell into an undergraduate psychology degree at Manchester Polytechnic as it was then known. Up until about two weeks before I moved to Manchester I had been all set to train as a dentist in Leeds. But my soon to be Arts School girlfriend at the time had turned my head. She had no doubt that the relationship between dentistry and I was doomed before it had even started. ‘The dental sciences are not for you, my love’, she had whispered. Or maybe she told me that dentistry was a ridiculous fucking idea. I cannot recall her precise choice of words. Nevertheless, in the suffocating intensity of new-found love, I was to conclude that I was not to be a wearer of white coats, a puller of teeth nor a giver of laughing gas. You can tell that I had not done a lot of background research into this choice of vocation.

A career destined to fiddle with the mouths of others was a future that, I quickly acknowledged, filled me with dread. Five years of university sounded like a helluva long time. And then there was the halitosis of my imagined patients to bear in mind. Announcing to my disbelieving and not surprisingly disappointed Mum and Dad that I was off to study psychology – rather than pursue a career in oral care – I landed in Manchester in September 1990 right in the midst of ‘Madchester’, the Happy Mondays, Stone Roses, Ecstasy and the Hacienda. My backup plan of psychology had been chosen by my maths teacher who had argued, in a rather sinister tone as I now recall, that psychology was 90% female students and as good a reason as any to plump for an undergraduate degree course. So here I was. In Madchester. A city which announced itself to the world with self-assured hubris: And on the seventh day God created Manchester.

And here I was all set to assess the psyches of my nearest and dearest.

On the first day of the course the Head of Department at the time, an amenable professorial looking chap called Dr Banister, asked our student cohort if we had any questions.

I put my hand up.

‘Yes, you, the spotty chap with the poorly chosen bandana’, Dr B asked.

‘What is psychology?’ I bumbled.

‘Ah, the perennial question’, Banister replied, ‘and a deeply philosophical one as well. And one that we will undoubtedly return to throughout the course’.

At least I think that's what he said. With that rather dismissive reproachment he was finished; leaving us to decant the lecture room and make our way to the student bar to consume the very reasonably priced warm lager.

Looking back, I don't think I bargained for such a muddled answer from Dr B. In all honesty, I had only asked the question to get hold of a pithy definition that I could share with my mother in conversation on the payphone in the student hall of residence later that evening. She, and my old man, had been drilling me with this question for a number of weeks and I still did not have a ready answer. To state that my hooking up with psychology was serendipitous risks understatement. Yet, in hindsight, my degree choice was a blessing. Little did I know that Manchester Polytechnic was, at that very time, a hotbed of Marxism, feminism, radical pedagogy, community activism and psychoanalysis that mixed – not without fraught moments of passionate disagreement – with more mainstream psychological staples of cognitive, development, social and biological perspectives. My three years of study – perfectly balanced I would like to think now with just the right amount of alcohol, drugs and partying – gave me an incredibly critical understanding of psychology. So critical was this quickly honed knowledge that I started to doubt early on in my psychology training whether or not psychology had any merit whatsoever. The course also instilled in me a total distrust of ideas and knowledge-claims that announce themselves as natural or common-sense:

This is how things are.

This is how we have always done things.

Human nature makes us intrinsically greedy.

People with Down's Syndrome are happy care-free folk.

Autistic people fail to relate to others.

Mainstream schools are not designed for children with profound disabilities.

Children who struggle in primary classrooms exhibit behaviour typically associated with ADHD.

Blind people have superhuman hearing.

Brexit means Brexit.

All children pass through the same stages of cognitive development.

Childhood equates with innocence.

While the second-hand textbooks that I bought from the Uni bookstore defined psychology as ‘the scientific study of mind and behaviour’...