Expanding the View: The Lives of Women with Severe Work Disabilities in Context.

I want people to know to know that we are human. We live, we love, we hurt, we laugh, we cry ... we just want to be seen and heard as human beings. Shay (Study Participant) The Rehabilitation Act Amendments of 1992 have mandated priority in services to those with the most severe disabilities. When gender and ethnicity are combined, women with severe work disabilities (SWDs) constitute the largest percentage of those with the most severe disabilities (Jans & Stoddard, 1999). Statistics indicating low educational attainment, unemployment of underemployment, high incidence of abuse, low self-esteem, and increased isolation (e.g., CoRone & Cottone, 1992; Danek, 1992; Fulton & Sarbonie, 1994; Hanna & Rogovsky, 1991; Nosek, Howland, & Young, 1997) highlight the problems faced by women with SWDs, yet much of the extant research has been conducted with women with disabilities who were employed of pursuing an education (e.g., Nosek et al., 1994). Unquestionably, women with SWDs face substantial barriers to participation in social, educational, and work roles (Capella, 2002; Doren & Benz, 1998; Graham, Jordan, & Lamb, 1990). Statistical representation, however, does not tell the full story of their lives (Morris, 1992; Saleebey, 1997). An exclusive emphasis on problems may have hindered investigations into aspects of existence that have meaning on personal, familial, and cultural levels (Marsella & Leong, 1995). The lives and experiences of women with SWDs consist of more than problems associated with disability, ethnicity, and gender status (Wendell, 1996), but rarely have they been approached from a perspective that seeks to understand rather than to diagnose. This study was developed in response to the dearth of knowledge about the lives and views of women with SWDs. This study is significant in that qualitative approaches to investigation combined with a feminist standpoint methodology (Alcoff & Potter, 1993; Riger, 1992) and a strengths-based approach to interviewing (DeJong & Miller, 1995; Saleebey, 1997) gave five women with SWDs the opportunity to describe their lives, experiences, and decisions in an interpersonal context. Prolonged observation of the participants, in-depth interviews, and interactive viewing of videotaped interviews were used to identify emerging themes that can widen the view of women with SWDs so that more than merely a snapshot of problematic aspects of their lives is given. Theories and interventions can effectively address the needs of women with SWDs only if derived from the women's standpoint (Alcoff & Potter, 1993). Method Participants The present study used a theoretically driven sample (Lincoln & Guba, 1985) rather than one selected on the basis of how well participants represented a larger pool of women with disabilities. The sample consisted of five women with physical or psychiatric disabilities, or both, who met the U.S. Census Bureau's (2002) Current Population Survey criteria for severe work disability. None of the five women were employed at the time of the study because of long-term physical or mental illness that prevented performance of any kind of work nor had any of them worked at all in the previous year because of illness of disability; all five were under 65 years of age and were covered by Medicare or were receiving Social Security Insurance. Participants ranged in age from 30 to 63 years, were of European American descent, and lived with one or more severe disabilities. The five participants were referred to me by counseling professionals or through personal contacts; each participant chose her own pseudonym. Shay, age 30 and having a disability for 4 years, lived alone in a subsidized housing complex. Shay was diagnosed with multiple sclerosis 2 years after sustaining multiple injuries in a car accident. The severity of her disabilities required a paid care provider to assist with activities of daily living. …