A Balancing Act: How Women with a Hidden Disability Perform Femininity
All the world’s a stage, And all the men and women merely players: They have their exits and their entrances; And one man in his time plays many parts. William Shakespeare, As You Like It (1600)
Introduction Hidden Disability
1 A “hidden disability” is one that is unapparent to outside observers except by disclosure or unusual circumstances. While persons with hidden disabilities are afforded a sense of anonymity, they must contend with different challenges, including learning strategic self-disclosure and impression management; when to disclose and make disability visible and when to “pass” and give society the impression of able-bodiedness. The choice, to be or not to be disabled, has important implications for the way we conceptualize disability, and the concept of identity as a whole. Gendered social expectations impact these decisions on a constant basis.
2 This paper uses a narrative research approach to understand women’s personal identification (or lack thereof) with being “disabled” and the impact of womanhood on this identity process. I will focus on the self-narratives 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. Narrative Research Methodology
3 Through a face-to-face two-hour tape-recorded guided conversation with Victoria, Angela, Mary, and Rosalina, I solicited the unfolding of each woman’s “story” prompted by the question, “Tell me about what your life has been like living with (specific condition), from the beginning.” Each woman had the opportunity to respond to the presentation of data, joining with me in the construction of the results, enabling a sense of ‘co-ownership’ of the research. In this process, the participants and I together embraced the discovery of the experience of hidden disability.
4 A narrative research methodology is used to present the results. Using narrative construction, I assemble the elements of a participant’s descriptions into a single vivid narrative to draw the reader into the individual’s lived experience as an alternative reality (Barone and Eisner; Polkinghorne). This data presentation is meant to enable ‘empathetic witnessing’ of a different kind of life to inspire a dialogue between the reader and the text, invoking an understanding of why and how a person acts as he or she does (Barone and Eisner; Coulter; Docherty and McColl).
5 While narrative construction is used to emphasize unique differences across cases, analysis of narratives is used to generalize to the overall experience of hidden disability. Analysis of narratives illuminates universal features of participants’ stories, breaking the participants’ overall narrative into paradigmatic categories, allowing for common themes to emerge across the collected stories (Polkinghorne). By reading the interview transcripts over and over, key linkages, common themes and ideas, emerged (Charmaz and Mitchell; Erikson). These key linkages were then grouped with others as part of an overarching concept, leading to the construction of categories of central significance (Erikson; Polkinghorne). This overall process, in effect, brings order and consistency to the data by classifying sections according to their commonalities (Polkinghorne).