Contested Ideas about Disability, Illness and Identity in Sociology – keynote address

Liverpool Conference: 1st September 2012 Changing Capacities: Changing Identities
Carol Thomas: Keynote Address
Paper title: Contested Ideas about Disability, Illness and Identity in Sociology.
PowerPoint – Carol Thomas

Introduction
First, many thanks to the conference organisers for inviting me to give this talk – and participating in this imaginative conference. The theme: Changing Capacities: Changing Identities is central to my own academic work – and to my life – and it is no accident that these dimensions are closely connected.

Like many other people, I have not just changed by becoming older – but have changed continually in an embodied sense, and therefore in an identity sense, by developing a – quote – “chronic illness” in my 30s, the 1990s: multiple sclerosis – MS. The MS changes were increasing visible and evident – making it obvious that I was a disabled person. But hang on a minute – wasn’t I already a disabled person, indeed disabled since birth? I was actually born without a left hand – a life-long impairment – and as a young child easily learnt to adapt to life as a single handed person. But as a teenager I also learnt that it is far easier to get by in life if one is perceived by others to be ‘normal’ – and as a consequence I became skilled at hiding my missing hand in a pocket. People didn’t notice and I ‘passed’ as normal – so, hurrah – I was not a disabled person, and I did not want to have anything to do with disabled people: I was not one of ‘them’.

But developing MS in my 30s meant that, slowly, I had to adjust my thinking – I WAS a disabled person – because of my hand and having M. I found I had to adjust to and accept this – or crumble away psychologically. My goodness, it was difficult to adjust to this new identity – given the previous years of denial and distancing. I couldn’t have imagined – then – that the years to come would witness a complete switch around – I eventually became proud to be a disabled person. So, how did that happen?

Well, it had a lot to do with my search for new ideas about disability, illness and the body – and particularly my embrace of disability studies and the disabled people’s movement in the 1990s.

Let me turn to this search for ideas.

Medical sociology

First of all, I had turned medical sociology – because I had worked as a sociologist in university settings for many years. Of particular interest was the interactionist theoretical school in medical sociology in the UK & US. Work in that tradition looked at the social dimensions of – to quote – ‘living with chronic illness and disability’. This body of research focused the lives of people with conditions like heart disease and stroke (circulatory), as well as (neurological) conditions like MS and Parkinson’s disease, and others such as rheumatoid arthritis, diabetes and some cancers. This research was impressive in that it explored, sympathetically, ‘patients’ own stories about their lives – from diagnosis, treatment, rehabilitation and life after discharge from health services. The medical sociologists focused on the dramatically changed social status of – quote – ‘normal people’ who had had the onset of worrying symptoms – that led to medical encounters and a diagnosis of ’whatever’ (XX) disease.
There was particular interest in the following themes:
OVERHEAD
• Coping with a changed sense of self in the social world – personal identity change and ascribed identity change.
• Altered social relationships and interactions within families and among close friends: coping, adjusting, adapting by small groups of people.
• Managing medical encounters and adjusting to changed life circumstances – associated with drug regimes, prostheses and ‘mobility aides’ etc. etc.
• Intimate coping and managing of a changed body – dealing with what it could and couldn’t do.

Now, I could understand from my own experiences, and that of other people I knew, that these were very important themes and issues. They were relevant, and spoke to me. But, on the other hand , I felt uncomfortable with the language and sense of ‘othering’ that was going on in this research. I felt, OK – BUT IS ALL THIS NEGATIVE STUFF ALL THERE IS TO BECOMING DISABLED?

For example, Kathy Charmaz talked about coping with the – quote – ‘loss of self’, the ‘diminished self’, and of being ‘defeated’. Micheal Bury talked about – quote – “biographical disruption” – and Graham Scambler talked about ‘assaults on the life-world’, on ‘struggling’, and the stigma and prejudice that comes with being chronically ill and disabled. All spoke of suffering and loss – that is, living with a sense of hopelessness – though Bury noted that some patients’ spoke of survival and had – quote – ‘the reconstructed the self’ over time.

I looked at the ideas of other medical sociologists who worked with different theoretical traditions – ‘critical theorists’, postmodernists and poststructuralists following and advancing the work of Foucault – and feminist sociologists associated with a wide range of theoretical approaches.
I looked into this carefully – and found that there was a common problem: they all approached chronically ill and disabled people as SOCIAL DEVIANT individuals – whatever their theoretical tradition. Put another way, it is sociologically normative to approach the ill and disabled as socially ‘deviant’. Indeed, medical sociology had thrived on this normal/deviant dualism – mirroring the enlightenment inspired normal/pathological bifurcation in medicine.

OVERHEAD 3

However, I could also see that despite this basic commonality, sociologists in different theoretical camps did adopt moral and political stances that varied markedly – some were sympathetic to the horrors associated with being viewed as deviant in society, while others SHARED in viewing ill and disabled people as ABNORMAL DEVIANTS – people of lesser worth and social value.
So, overall: the time is long overdue for a rethink: given all the political and social changes on the disability question in Britain, there should be a new sociology of disability – a variant of equality and diversity studies – located alongside the now familiar engagements with gender, ‘race’, sexuality, age and social class

Disability studies

So, then I turned to another, newer, social science discipline: disability studies. Here I found a dramatic and welcome contrast. In essence, the BIG idea in disability studies is that: it is society’s view and response to ‘disability’ that creates the problems and barriers that disabled people encounter – whether they have physical, sensory, intellectual or emotional impairments or long-term illnesses. That is, disability is a social-relational phenomenon because the FAULT lies with SO-CALLED ‘NORMAL PEOPLE’ in society – who have the power to ORGANISE THE FABRIC, SYSTEMS and BEHAVIOURAL NORMS OF SOCIETY TO SUIT THEIR OWN NEEDS. Here was a set of ideas – known in the UK as THE SOCIAL MODEL OF DISABILITY – that made me and other disabled people feel a whole lot better about ourselves. We could look beyond ‘suffering’ and the minutia of identity change – to concentrate on a much wider set of issues and challenges in life, such as: getting or holding on to a JOB, having a HOUSE that was suitable in terms of its design and facilities, getting a decent EDUCATION for disabled children and young adults, being able to TRAVEL freely, being able to use LEISURE FACILITIES etc etc.

Here is how a leading disabled writer, Mike Oliver put it:
OVERHEAD:

In the broadest sense, the social model of disability is about nothing more complicated than a clear focus on the economic, environmental and cultural barriers encountered by people who are viewed by others as having some form of impairment – whether physical, mental or intellectual. The barriers disabled people encounter include inaccessible education systems, working environments, inadequate disability benefits, discriminatory health and social support services, inaccessible transport, houses and public buildings and amenities, and the devaluing of disabled people through negative images in the media – films, television, and newspapers. (Oliver, 2004: 21).

This perspective had been developed by disabled people themselves – from the 1970s onwards – eventually developing into disability studies in the universities and elsewhere. The Disabled People’s Movement in the global North – like the black civil rights movement and the women’s movements before it – built ideas NOT around social deviance BUT around the idea of social oppression. Children and adults ascribed as ‘disabled ‘ were among the socially oppressed – dealt with as second class citizens, or even as less than human in many cases.
This OPPRESSION perspective was certainly revolutionary – but as in feminism and radical black studies – it did not take long for theoretical diversification to develop. That is, different theoretical approaches and perspectives to understanding the nature of the social oppression of disabled people began to emerge – an enrichment of ideas much to be welcomed. All were committed to supporting the kinds of social changes that would advance the equality, rights and inclusion of disabled people.

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So, to summarise about contrasting ideas and identities: medical sociologists talked about social deviance while disability activists and writers talked about social oppression. Here’s a quote from one of my books which seeks to capture this: OVERHEAD
… two overarching and contrasting sociological paradigms are in play. Sociologists in disability studies use a social oppression paradigm: to be disabled, or to be discursively constructed as ‘disabled’, is to be subject to social oppression. Disablism functions alongside sexism, racism, ageism, and homophobia in society. Medical sociologists, I argue, theorise chronic illness and disability through the social deviance lens, and have done so in different theoretical guises for many years. Ideas about social deviance have infused medical sociologists’ analyses of two main themes: societal responses to people designated chronically ill or disabled, and the social experience of living with stigmatised bodily states. Theoretical diversity is evident in both the oppression and social deviance paradigms. (Thomas 2007: 4).
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MOVING ON


Over the years, there has inevitably been a great deal of change, movement and unfinished business in the new discipline such as disability studies, closely connected as it is with the on-going struggles of disabled people for inclusion, access to resources, independent living and anti-discrimination practices.

I want to finish by giving you a flavour of a few of the CONTESTED AND CHANGINHG ideas WITHIN Disability Studies

1. Feminists have played a major role within disability studies. Today feminist writers give much attention given to the concept intersectionality: This concept has proven to be useful in efforts to theorise the intersections of oppressions and privileges among people in a world of social diversity – especially to consider how social identities intersect. I’m a disabled woman, but I’m also in a well-paid job, I’m white, I’m heterosexual, I’m a mother etc etc – many faces to the world – but with different faces prioritised from day-to-day, moment-to-moment. Intersectionality reminds us that individuals’ identities – self-defined and ascribed – are constituted by multiples of reference categories – and that any attempt to define a person singularly inevitably results in crude reductionism. So, homogenized categories like women, gay people, or disabled people must be unpacked and disassembled – because they conflate and disguise huge social differences and variations in status and power among and between social groups. But intersectionality is a difficult concept to understand in-depth, and it is not surprising that writers move in contrasting theoretical directions when attempting to conceptualise and knit together different dimensions of individuals’ identities and experiences of oppression

2. Unlike the medical sociologists, in disability studies we have not paid enough attention to the experiences of living with types of impairment, the impairment effects of ‘difference’, and forms of disablism. And we need to be more inclusive: e.g. chronic illnesses, mental distress, dementia – and other lesser known and attended to ‘differences’. For example, one PhD student of mine is looking at the possibility of applying the oppression paradigm in disability studies to understanding ‘recovery’ from serious mental illness, and new identity construction – and she is not alone in wanting disability studies to add to knowledge about so-called mental illness’ in society.

3. Third example – on the global stage, there is much work to be done in understanding the ways that disability and long-term illnesses manifest in the global south. OVERHEAD – PICTURE. Across the world, policy and legislative developments on the disability question have moved disability away from medicine’s jurisdiction and towards matters of social equality and diversity. For example, we now have the United Nations Convention on the Rights of People with Disabilities (CRPD 2006) – an international agreement designed to protect and promote the social rights of disabled people throughout the world (the UK Government signed up in 2007). However, this development – like our UK Disability Discrimination Acts (1996, 2005) – can’t lead us to presume that disabled people have actually achieved greater social equality with their non-disabled counterparts in daily life. There is much rhetoric and discursive bluster in policy-making and official circles about greater equality and advances, but the degree and extent of real beneficial social change is a matter of fierce debate and dispute in disability politics and disability studies, especially in these times of economic austerity. Indeed, large sections of the disabled population across the globe have reported worsening living standards in recent years, as well as diminished opportunities for social participation. Have politicians and powerful agencies such as the World Bank appropriated the language of empowerment, inclusion and individual rights because it serves their shared neoliberal political and economic agendas? We must not be under any illusions.

4. Finally, new theoretical developments are always coming into being WITHIN Disability Studies – for example under the headings Feminist Disability Studies or Critical Disability Studies. Writers and theorists like Margarit Shildrick – who will be talking to us later today – are advancing different ideas about the processes involved in generating, sustaining and performing oppression of people with – quote – “non-normative” – bodies and minds. This is very exciting and valuable – though we disagree on much that I argue, and vice versa.

But this is what we need in disability studies and other arenas: fresh ideas to address changing capacities and changing identities.
THANK YOU FOR LISTENING, and I’m really looking forward to all the inspirational ideas and performances on offer here today.

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