Evolution from Negative Identity to affirmation of ‘Disability Identity’: Life story of a Woman with Spina Bifida in India

Abstract

Purpose: This paper is part of a research study that explored the lived experiences of adults with physical disability in Delhi, India. It traces the evolution of a positive outlook towards disability in a young woman living with spina bifida.

Method: This paper is part of a larger study, and is one of the twelve narrative accounts of adults with physical disability, who had been selected to be part of the study using purposive sampling. The study adopted a life story approach wherein the participant talked about their life events in a chronological order. It is believed that stories constitute the psychological realities, including identity, and identity is expressed in sociocultural relations through talk.  This paper is the life story of one woman with spina bifida and it recounts her journey depicting the dynamic nature of identity construction. Her life story gives rich insights in terms of personal and social experiences that enabled the researcher to explore the complexities in identity construction.  A pseudonym, Ashima, has been used to maintain confidentiality.

Results: By describing her childhood experiences, medical journey, relationships, and marriage, the participant was able to make sense of the events leading up to the emergence of a positive disability identity. The daily lived realties of exclusion had instilled a sense of negativity in her but she began to affirm the disability identity after contact with disability groups. The positive role of the family was an additional factor in the participant’s acceptance of her disability identity.  

Conclusion: The paper presents the emergence of a positive identity by challenging the traditional approaches and oppressive social constructions of disability. It underscores the importance of voice, agency and the celebration of disability identity, and paves the way for future researchers to listen to the insider’s perspective in order to create a culture of valuing differences.