Explanatory models of self-understanding in adolescents born with spina bifida

The author used phenomenological (interpretive) ethnography to uncover how living with physical disability shapes self-understanding (identity) in adolescents born with spina bifida. She conducted multiple in-depth interviews with 11 late-stage adolescents (ages 18 to 24 years). Analysis of their narrative accounts illustrated differences with respect to how study participants understand and experience physical disability and its attached meanings in relation to self-understanding. Study participants took up (claimed) disability in three primary ways: identity as overcoming disability, identity as objectifying disability, and identity as integrating disability. These informal explanatory models of self-understanding were fluid, not static, mirroring identity development in youth. Findings suggest that individuals born with physical disability confer explanatory meaning to their disability that occurs within a background of deeply held, taken-for-granted assumptions, meanings, and practices from local and larger sociopolitical contexts. These informal explanatory models offer insight into positive disability identity.