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‘Am I a good girl?’ Dying people who have a learning disability
  1. Irene Tuffrey-Wijne, Research Fellow
  1. Division of Mental Health, St George’s, University of London. Email: ituffrey{at}sgul.ac.uk

Abstract

This article describes the challenges of ‘being with’ suffering people who have learning disabilities. People who have learning disabilities often hide their pain and distress, exhibiting a tendency to comply. This stems partly from life-long powerlessness and partly from the inability of others to bear that distress. This article reflects on the author’s involvement with two women who had learning disabilities and who were dying of cancer. The author describes how, because there was little that could be done to relieve the women’s distress, ‘being with’ the two women was almost unbearable. The manner in which hospice nurses related to the women is examined. The author also reflects on her own interactions with the women using her contemporaneous field notes, concluding that listening, without the notion of helping, is an important skill. Recommendations include focusing fully on such patients with the desire to understand, and avoiding the urge to ‘help’. Conflicts of interest: none

  • Cancer
  • Communication
  • Dying
  • Learning/intellectual disabilities
  • Pain
  • Psychosocial aspects

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