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Who Will Be There When I'm Gone? Women's experiences as primary carers of their sons and daughters with intellectual disabilities


An innovative and confronting piece of research focussing on 17 women and their stories as mothers and primary carers. Heininger writes that the title of the work was in the form of a question which hits at a fundamental issue for every parent of a child with a disability and concerns questions of the meaning and value of our lives with one another. Her innovation and 'embeddedness' in her research can be viewed in her decision to choose a metaphor to lead a through the stories; the hart, the male red deer. "It has been observed that when harts wander in herds, or when they are swimming...they support the weight of their antlers, on each other's backs. One takes the lead and others follow in line....By thus supporting what is burdensome each in turn, they all accomplish their journey without abandoning each other" (p.vi). What the women say is stark, honest, 'angry-making' and inspiring. Keyword: Families

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Heininger, Jeanie
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