Challenging the world of disability

Buckland is the mother of a disabled child, Nikki. As a professional photographer, her work in this book forms a part of what she does to make disability more visible and accessible. Her photographs focus primarily on Nikki, as well as a small group of families with disabled children. McDougall, Swartz and Van der Merwe are all involved in disability research, within specific disciplines including psychology and media studies. The combination of personal documentation with powerful research commentary is groundbreaking. The contributors hope that the photographs and text will encourage “thinking and debate, disagreement and even anger” about an issue which all too often is hidden, pushed aside, made invisible. Buckland explains that the book is, in a sense, a disclosure of something secret. “The photographs are public expressions of the sometimes painfully private experience of being the parent of a disabled child in South Africa,” she says. The three main series in the book - Dysmorphic Series, Stickytape Juice Collection and Where’s Nikki? have recently been exhibited in South African art galleries. There is a tendency for disability in South Africa to be a secret. The challenges that face families of people with disability are also often hidden away. Part of the reason is that disability is sometimes (still) seen as a shame, a disgrace, a source of stigma. But, argue the authors in this book, what if disability were considered ordinary or everyday? What if disability were seen as just one among many differences that there already are between people? What if disability were defined not simply as a physical or mental medical state, but were understood to be a societal problem – in terms of how other people react to disability, even how geographical and social spaces can be discriminatory? These are some of the key issues raised in Zip Zip My Brain Harts, with Buckland’s images forming a pivotal core around which debate revolves. While the academic research grounding the book is rigorous, there is an unusually personal edge to all the essays. The researchers themselves have spoken of their excitement at the opportunity to break free from the usual bounds of research. “The quality and emotional impact of Buckland’s work gave us a chance to try something different and new,” they say. At the same time, none of the primary concerns surrounding disability are ignored. It begins with an important comment on the “theatrical thrill” of how disability has often been viewed – as freakish, a carnival side show. These stereotypes have a real impact on disabled people’s quality of life. Counteracting this harmful legacy is Buckland’s Dysmorphic series, superimposing X-ray images with other photographs of her son. They make a strong statement about Buckland’s relationship to the medical profession, and also as a different way of seeing disability. Also discussed is the impact of discovery on parents, families and friends, and how they adapt (or don’t) to various aspects of disability. “I was mindful of the consumerist notions of idyllic childhood promised by Pampers nappies and Woolworths advertising which are disrupted by the disclosure of disability,” says Buckland. Her accompanying photographs show articles of clothing lovingly altered to mask a child’s ‘difference’ – trendy shoes with hidden calipers, t-shirts with sewn-in bibs. Then too, the role of medical professionals is discussed in terms of the responsibility placed on them. While doctors are expected to ‘make things better’, sometimes they can not. It is within these expectations that much hurt and confusion can lie, for all parties concerned. Health practitioners are often blamed for not dealing well and humanely with issues of disability, and this book gives examples of some such incidents. But the authors go much further than this. They show how health professionals, including doctors, are often put under unrealistic pressure, and blamed because they cannot make everything right, however much they try. The authors show how a more nuanced understanding of how doctors and others are also emotionally affected by disability and by social pressures can lead to a less stressful life for doctors and better care for disabled people and their families. The book also looks at the impact of disability on the extended family, the stigma attached to parents for not producing a “perfect child”, and the stresses that can be placed on relationships. Parents discuss their guilt at admitting they have felt depressed, tired, even angry sometimes – when they are expected to consistently cope with the situation. Here, the Where’s Nikki? series of photographs includes, and also intermingles, shots of different families to create separate but similar narratives. The intention is not to portray disability and parenting disability as an intrinsically different experience of life. Rather, Zip Zip My Brain Harts hopes to show that it is both different and the same. Most importantly, the book aims to open up a space for dialogue about an issue that ultimately affects every single person in this country. As Justice Albie Sachs, himself a disabled person, says in his moving introduction to the book: “This is a most remarkable piece of visualised literature.” Zip Zip My Brain Harts features photography by Angela Buckland with text by Kathleen McDougall, Leslie Swartz and Amelia van der Merwe and is published by the HSRC Press. Angela Buckland has exhibited widely in South Africa and abroad. Her work is in a number of public and private collections. Kathleen McDougall has a Masters in Media Studies and is completing a PhD in anthropology at the University of Chicago. Leslie Swartz is Professor of Psychology at Stellenbosch University. He has published widely on mental health and disability issues. Amelia van der Merwe is a research psychologist currently working as a Research Associate at the Child, Youth, Family and Social Development Research Programme at the HSRC. Copies of all of HSRC Press published titles are available from leading booksellers nationally, and from the online bookshop at www.hsrcpress.ac.za. All the images in the book are available to the media for reproduction. There is a collection of 50 images to choose from. - Low resolution images are available directly from Karen Bruns, free of charge for newspaper coverage and small print media (listings in magazines). - Digital high resolution images are available from the photographer. Copyright in the images has been retained by the photographer Angela Buckland. For a review copy of the book, or to make contact with the contributors, contact Karen Bruns. Contact Details Name : Karen Bruns Company : HSRC Press Phone :+27 21 466 8022 Email : This email address is being protected from spambots. You need JavaScript enabled to view it. URL : www.hsrcpress.ac.za