Abstract
For over 20 years, Tom Shakespeare has been at the forefront of challenging received wisdom within Disability Studies. He has been critical of what he sees as its often weak empirical basis: this edited volume aims to tackle that flaw, offering evidence to address gaps in knowledge and understanding and to support policy change. The book also aims to answer the question ‘What are we doing, when we do disability research?’
The volume contains a wide range of eclectic contributions. Indeed, they might have appeared a somewhat random mix had Shakespeare not explained in the Introduction that the chapters largely reflect his own ‘personal and philosophical preferences’ (p. 2). Empirical research showing genuine engagement with disabled people’s ‘lived realities’, conducted with a view to improving those realities, ranks highly in his preferences. The book has four sections, entitled ‘Illness and impairment’, ‘Disabling processes’, ‘Care and control’, and ‘Communication and representation’, each comprising three or four chapters. Geographically, contributions range from Japan, Australia and Turkey to India, Italy and the Czech Republic. Methodologically, while most studies draw on qualitative methods, quantitative and mixed method designs also feature, as do case law analysis and literary criticism. Thematically, and reflecting the lived realities mentioned above, dependency, learned helplessness, constraint, violence, oppression and bureaucracy are explored, some of these being unusual, if not potentially controversial, topics within Disability Studies. Alongside these, self-determination, agency and enablement are examined. The volume covers people with a range of impairments, including mental distress, intellectual disabilities, dyslexia and life-limiting illness, groups sometimes neglected in Disability Studies.
There is also some variation among the chapters in terms of interest and quality. In my view, the best chapters include Howard Sklar’s consideration of the ethical issues raised when people with intellectual disabilities are portrayed in literature. Kohji Ishihara offers a fascinating account of Tojisha Kenkyu, a form of ‘do-it-yourself’ research conducted by people with mental distress in Japan. Here, individuals investigate their own ‘problems’ through interviewing others, artwork and role play, sharing the results with their peers. Other chapters are memorable for the powerful data they report. Jo Ferrie and Nick Watson present poignant first-hand accounts of everyday life by people with motor neurone disease, while Nandini Ghosh’s case studies of the violence perpetrated against five disabled women in Western Bengal are truly shocking. Overall, and true to Shakespeare’s desire to focus on empirical research, the chapters are not particularly strong on theory. Ferrie and Watson are an exception, with their work on ‘psycho-emotional impairment effects’. Halvor Hanisch employs the concepts of ‘analytical, ontological and epistemological priority’ to argue that pre-existing Disability Studies perspectives are typically applied to the study of violence against disabled people rather than new perspectives developed, based on empirical evidence. I found parts of this chapter difficult to follow. A couple of other pieces, on employment strategies for disabled people in Italy and a comparison of video interpreting services (VIS) in different countries, become bogged down in detail about local projects or facilities, making the chapters rather heavy-going.
While this book does not focus specifically on policy analysis, most chapters have clear implications for policy development, whether in relation to higher education, employment, ‘hate crime’, social care or homelessness. Regardless of location, a number of recurring themes salient to disabled people’s everyday lives emerge – aspirations to learn, work and develop, the right to exercise choice and control in small and big decisions, the importance of personal safety while also enjoying freedom to express sexuality – all requiring solid policy and legislative underpinning to be realised effectively. In addition, the yawning gap that often appears between policy and practice is exposed and analysed, for example regarding the implementation of direct payments in Iceland: this carries lessons for other countries. It is therefore important that this book be read by not just academics but also activists, policy-makers, politicians, practitioners and other ‘influencers’.
In conclusion, while some chapters may be stronger than others, this book is well worth reading. It captures and conveys the wide diversity of disability research today, stretching well beyond the ‘usual suspects’ of Disability Studies and grappling with issues of real concern to disabled people internationally. At the same time, the volume has an unfinished and somewhat fragmented feel: it might have benefited from a concluding chapter by Shakespeare, drawing together the diverse threads of previous chapters and indicating future direction(s) of travel. This would also have been an opportunity to address the question ‘What are we doing, when we do disability research?’ I am not sure that question has been fully answered.