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Through the mother’s voice: Exposure and intimacy in Lesley McIntyre’s photo project The Time of Her Life and Elisabeth Zahnd Legnazzi’s Chiara A Journey Into Light

When it comes to depicting ill or disabled children, the ethics of representation becomes increasingly complex. The perception of photographs as voyeuristic and objectifying is of particular concern here and resonates with widespread fear about the eroticisation, mistreatment and exploitation of children. Although these fears are reasonable, this view does not take into account the voice and agenda of the photographic subject, disregards the possibility of recognition and the participatory nature of photography. In this article, I focus on photography as a collaborative practice. I analyse two photographic projects by photographers/mothers that document their ill and dying daughters – Lesley McIntyre’s photographic essay The Time of Her Life (2004) and Elisabeth Zahnd Legnazzi’s Chiara A Journey Into Light (2009). Illness in these projects is not experienced in isolation. Instead, the photographs and accompanying texts provide a space to engage in a dialogue which is built on the interdependency of all the participants of the photographic act – the photographer, the subject of the photograph and the viewer. My aim is to question how these projects construct experiences and articulate private expressions of illness and how the photographs enhance and/or challenge the mother–daughter bond. Alan Radley’s critical analysis of representations of illness, Emmanuel Lévinas’s and Maurice Blanchot’s perspectives on ethical philosophy and visual social semiotics approach developed by Kress and Van Leeuwen provide a guiding framework for this study.