In 1971, the White Paper Better Services for the Mentally Handicapped set out landmark policy on the future direction of services for people with learning difficulties; this was a major move toward what we now understand as 'social care'. Contemporary texts about the lives of people with learning difficulties tend to begin with statements about how far policies and services have developed and the rising expectations of families and individuals (Gates, 2005). It may therefore be easy to overlook the continuing power of 'experts' and the decisions they make about other people's lives.
1971 was the year that my sister, Anna Marguerite Fields was born. Anna fought illness during her first year of life but made good progress. Our parents were told her chances of survival into adulthood were good. However, not long before her fourth birthday, Anna died. She had been refused life-saving surgery for a hole in her heart. Contemporary research shows that this has happened to a number of children with Down's syndrome (Savulescu, 2001; Race, 2009).
Anna's impact on my family and our individual lives was profound. This paper explores some of the issues that arise for siblings through (retrospective/historical) auto-ethnography (Orsmond and Seltzer, 2007; Miles, 2009). It also links past family events with wider issues highlighting some significant questions about how far policy and practice has moved on today. With the recent publication of Valuing People Now (DoH, 2009), are we really closer to valuing the lives of people who are perceived as 'different'? What is the current 'expert' discourse about who lives or dies?
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Chair of the Social History of Learning Disability (SHLD) Research Group
School of Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies
The Open University
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