Disability Community Leaders' Disability Indentity Development: A Journey of Integration and Expansion

Abstract

The purpose of this study was to investigate the disability identity development process of leaders of the disability community. Specifically, this study examined the cultural values, beliefs and assumptions individual participants held about their disability, what and who were the major influences on how they viewed themselves as disabled people and how their views of their disability changed over time. The study employed the qualitative methodology of in-depth, semi-structured interviewing to gather the data. Interviews were coded, coded data was entered into and sorted by Atlas ti, a software program for managing qualitative data and a coding auditor confirm identity 'positions.'

The findings show that disability identity develops in a dual-dimensional process. The first process is integrating disability positively into one's sense of self and oneself into the disability community. The second process involves the expansion of understanding the disability experience to include an increasing variety of disabilities, other diverse communities struggling for equal rights, and finally, a spiritual sense of oneness with all of humanity. Factors that played an important role in participants' disability identity development were the cultural beliefs, values and assumptions about disability in their environments, education, disability community, personality traits, age of disability onset, new paradigm of disability, role models and gender/sexual identity. A time of bonding with the disability community was found to be essential for the development of a disability identity and a sense of wholeness as a disabled person.