versión impresa ISSN 1015-6046
Psychol. Soc. no.38 Cognella 2009
Towards cohesion in disability research
Claire Penn; Jennifer Watermeyer; Joanne Barratt
Health Communication Project School of Human and Community Development University of the Witwatersrand P O Wits 2050 Johannesburg
Watermeyer, B, Swartz, L, Lorenzo, T, Schneider, M & Priestley, M (eds) (2006) Disability and social change: A South African agenda. Cape Town: HSRC Press. ISBN 0-7969-2137-7 pbk. Pages xii + 417.
There is no shortage of disability in South Africa. It is ever-present and profoundly linked to our historic past, and to issues of social inequity, poverty and lack of resources. There is however an acute shortage of writings about disability in South Africa and this shortage of writing has the potential to reflect negatively on the disability movement and to jeopardize appropriate access and resource distribution. Further without proper sustained scientific research in this area, development of appropriate policy and suitable approaches to prevention and effective service delivery will not happen.
In this regard, the text Disability and social change offers a groundbreaking and major contribution to this neglected area. It is an edited text containing the contributions of a number of important and experienced authors and tackles some highly pertinent issues. There is a great need to foster the establishment of a South African disability studies literature and to promote the views of disabled people. The contextual influences on disability are very powerful. The aim of the text is to initiate a dialogue of what it means to be a disabled South African. The disabling aspects of South African society are described and the book makes clear the interface between societal barriers and barriers to care, access and employment experienced by so many disabled South Africans particularly in the context of HIV /Aids. The sections in the book cover theory, government and civil society, the responses to disability education, poverty and social security, and the politics of service provision and human spaces. The contributors comprise a wide range of different role-players and the volume indeed provides multidimensional perspective on the topic. What is unquestionable is that here is a group of experts and many of the contributions reflect just the tip of an iceberg of wisdom and experience. There is a variety of styles and voices in the book. This is indeed the intention of the editors who stress the diversity of this country and the richness that emerges from such diversity. Fascinating in this text are the constant parallels drawn between the struggles for identity that are embedded in the country's political history and the stages and evolution of the disability rights movement.
The book provides insight into new methods of research and also contains many highly unique illustrative case studies which serve more than anything to highlight the marginalization experienced by the disabled, and the huge challenges that still exist. It becomes clear that the study of disability in South Africa has the potential to inform policy and practice in the rest of the world. In our opinion many of the chapters have met this challenge. However some of the chapters provide too much about what happens elsewhere, and too little on what is happening under our noses. This may be because of the shortage of research funding or opportunity but it is a distressing void. Because of global patterns, and South Africa's expertise in issues of marginalization and poverty as well as problem solving, the South African disability movement has the potential to make a hugely important contribution not just to national debates but to a broader international debate on disability and social issues.
Sometimes the chapters do not go far enough to emphasize the unique experience of researchers and practitioners here. For example, perhaps there is a need to interrogate the WHO International Classification of Function of Disability and Health (the ICF framework), and to consider whether this should really be the holy cow, or whether there is room for more ecologically valid models based on some of the complex social issues highlighted in the text.
There are some truly wonderful inclusions and contributions which report on some profoundly unique data and developments. Theory chapters aside, there is a need sometimes for more than anecdotal evidence or at least some acknowledgement that in the present absence of empirical and scientific evidence, some claims have to be preliminary. Because disability is so diverse and because the seeds of a unifying and framing theory seem to be emerging (from the title alone), in chapter one (or perhaps by way of preface to each chapter) we would have liked more editorial commentary on each of the contributions and an expanded input on the collective vision for future directions. The newcomer to the field (and we have in mind the student reader - for whom this text is a must!) would certainly benefit from such a perspective.
The two chapters on deafness for example are a case in point. There are serious omissions in the one chapter about language policy for SASL and a complete neglect of a large body of research on SASL published in international journals which has significantly informed and influenced language policy at a constitutional and educational level. The neglect of this research in itself points to the local and global political tensions around language policy and the article is an excellent demonstration of how polemic may actually negatively influence progress. Editorial commentary on those influences would have been interesting. The chapter on literacy with deaf adults is, by contrast, based on a comprehensive and balanced review of the relevant literature and is research based.
In the education section there is some interesting discussion of inclusion policies but again this might have been an opportunity for the author, based on some really depressing research evidence that exists, to commit to some further implications for local policy makers.
To summarize, this body of writings demonstrates clearly that disability has been, and will continue to be political. It is about the allocation of resources and the interface of power structures with real stories framed by gender, history, geography, health, hope, artifact and marginalization. The authors correctly point out that it is primarily from a research basis that meaningful change will occur in this country. We believe that the text will inspire and trigger some of these processes. A diversity of voices may be a strength but the book also illustrates the potential dangers of fragmentation. More networking is needed and more opportunities created for cohesive and collaborative efforts. This book fulfils that goal and we look forward to its sequel!