Professor Sue Read


"Living in the shadow of grief: Lessons from people with a learning disability"

"Life is characterised by movement, change and readjustment and thus by its very nature, by transitions, losses and grief. Death is often perceived as the ultimate loss and the only certainty within life itself. For some people with a learning disability death and dying may be difficult concepts to understand, and this often leads to disenfranchised grief. Perhaps professionals, families and friends simply don’t know what to say at this sensitive time; some may not know how to hold difficult conversations when words alone are not enough; and some people are afraid of how the person might react in their quest to understand and express their pain and sadness.

In this inaugural lecture I will identify and catalogue the challenges when supporting people with learning disabilities with disenfranchised grief and death. Against a UK backcloth, I will critically explore the concept, nature and meaning of support associated with loss and death, in order to show the complexity when supporting individuals who have cognitive impairments. Using my research experiences of travelling alongside people with a learning disability through their journeys of loss, I will demonstrate that marginalised groups can indeed teach us so much about death and dying, but often lack the vehicles/routes to help them share these experiences and this knowledge with others."

Sue Read, is Professor of Learning Disability Nursing in the School of Nursing and Midwifery, and has worked in the area of learning disability since 1976.

Her research interests include loss, death, dying and bereavement specifically, although not exclusively, with people with a learning disability. Sue is primarily interested in applied research that has a demonstrable impact on practice. She has developed (in conjunction with people with learning disabilities, parents, clinicians and other professionals) a range of resources (leaflets, booklets, films and workbooks) around loss, bereavement and end of life care.

Sue is currently involved in an action research project in partnership with people with a learning disability, to develop a flexible, computer based, interactive tool to support loss and transition. She has also led an initiative entitled ‘Toolkits for Better Health’, developing Toolkits to promote health access for marginalised groups. Sue was born in Stoke on Trent, and although she has travelled extensively with her research and teaching, she has never lived more than seven miles from where she was born.

This lecture is a past event.