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Keywords:

  • Down's syndrome;
  • empowerment issues;
  • history of learning disability;
  • identity;
  • narratives

Accessible summary

  •  This study is about the life stories of six older people with Down’s syndrome who spent some part of their childhoods in institutionalised settings.
  •  They have interesting and moving stories to tell about their lives. They talked about their childhood and current lives, their likes and dislikes, their strengths and difficulties and their hopes and dreams. They also spoke about the important people in their lives.
  •  The participants did not talk about themselves as being ‘old’, ‘disabled’ or as having ‘Down’s syndrome’. They talked about themselves in other ways, such as being ‘normal’, being a ‘man’ or a ‘beautiful lady’.
  •  The researcher learnt about herself whilst doing this study. She learned about the value of taking time to listen to people and she reflected on her own life story.

Summary

This paper is a narrative analysis of the accounts of six older people with Down’s syndrome who spent part of their childhood in institutional environments. The study aimed to find out how the participants talked about themselves. Different types of narrative analysis were used, including those of Murray (Qualitative psychology: a practical guide to research methods, London, UK, Sage, 2003), Gergen & Gergen (Hist Social Psychol, Hillsdale, NJ, Erlbaum, 1984) and Labov & Waletsky (Essays on the verbal and visual arts, Seattle, University of Washington Press, 1967). All of the participants spoke about their childhood, current and future lives. Most participants were able to reflect upon their strengths, limitations and hopes. The analysis highlighted the commonalities across the accounts: loss, abuse, health, significant others, transition, resilience and identity. Significantly, none of the participants identified themselves as having ‘Down’s syndrome’ or a ‘learning disability,’ nor did they identify with being ‘older’. Instead, individuals identified themselves in relation to gender and social roles. The accounts varied in terms of their form, structure, coherence and reflexive capacity. Clinical implications are discussed.