A Balancing Act: How Women with a Hidden Disability Perform Femininity

Abstract

The word “disability” carries strong cultural and social symbolic meaning. The impact of these meanings is entrenched in the storied experiences of either embracing or repelling “disability” as a self-characteristic. Persons with a “hidden disability,” one that is unapparent to the unknowing observer, make daily decisions about when, where, why, and how to disclose and adopt the disability identity or to “pass” and give society the impression of able-bodiedness. These decisions are heavily influenced by the bodily and social performance expectations of a given gender. Such gender expectations have reverberating effects on self-concept, relationships, and the way one interacts with the world. This study used a narrative research methodology to understand the identity processes of four women ranging in age from 21 to 46 years who have a hidden disability. Victoria has Juvenile Rheumatoid Arthritis; Angela has Epilepsy, Mary has Mitochondrial Myopathy, and Rosalina has Celiac Disease. In this essay, I also reflect on my own experiences as a woman with a hidden disability, Muscular Dystrophy. Through these personal, emotional, and insightful self-narratives, each woman relays the complexity of self-disclosure and disability identity.