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Abstract
Purpose: The aim of the study is to explore how personal and contextual experiences throughout the life course are recollected as having influenced the development of stigma-handling strategies among people associated with disability and stigma. The article describes the development of stigma handling among ageing persons of restricted growth in order to avert negative effects, develop resilience, strengthen the self and support a positive identity. Method: Qualitative retrospective interviews were conducted with ten persons – seven women and three men aged between 45 and 65 years – of short stature. Their narratives are analysed from a life-course perspective and the results presented under two main themes: the development of strategies during different stages of life, and the use of general non-stage-bound strategies. Results: The study shows how stigma-handling has evolved from childhood to become, by adult years, refined, contextualised strategies demonstrating human resilience. The analysis documents the impact of human agency on personal lives and the subjects’ efforts and strengths in handling adversity. Conclusion: The results demonstrate how the “insider perspective” reveals the individual’s resources, resilience and strategies and provides an important perspective for the rehabilitation setting.
The study document human agency, resilience and strength in a life course perspective among people of restricted growth faced with stigmatization.
The efforts and stigma handling strategies developed during the life course, such as withdrawal, humour, ignoring and positive thinking, are important tools to be recognized with relevance for other patient groups.
The “insider perspective” revealing the potentialities and strength of human agency and resilience, should be further explored within the field of rehabilitation.
Implications for Rehabilitation
Acknowledgements
The study is conducted by Ageing and Health in collaboration with SINTEF Health, the Frambu Center for Rare Disorders, Sunnaas Hospital, and the Center for Rare Disorders, Oslo University Hospital. We would like to thank all those who have participated in this study for their contribution and sharing of experiences, especially the informants. We also thank our colleagues, Vigdis Hegna Myrvang, Lisbet Grut, Abby Grant, Inger-Lise Andresen, Heidi Johansen, Eva Elisabeth Næss and Olga Solberg, for fruitful cooperation and discussions.