Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma

Disability Income: Narratives of Women with Multiple Sclerosis

People’s daily lives are conducted within a context, and persons with disabilities encounter social, political, and economic environments that both enable and limit their daily activities. This paper focuses on the impact of one aspect of these environments, namely disability income policies, on the lives of women with multiple sclerosis. Multiple sclerosis (ms) is a chronic disease which affects women at about twice the rate of men (Poser, Paty, McDonald, Scheinberg, and Ebers 1984). Its typical onset is during the late 20s or early to mid 30s, when women may be training for a career, working full-time, staying at home to raise children, or combining part-time work with domestic responsibilities . The disease has an unpredictable course (Confavreux, Aimard, and Devic 1980) and manifests itself in a range of ways, from little apparent incapacity to severe paralysis, with fatigue, motor symptoms impairment, and sight disturbance as the most common problems. Women with ms who no longer have income from employment need some form of income security to compensate for their lack of earnings. Income support programs are described and analyzed in the literature, but there is little documentation regarding the experiences of income program applicants or recipients, or how particular disabilities influence this experience. This paper aims to identify the primary income support programs available to women with ms who are no longer in paid employment, and to document the impact of the programs on their lives. 209 lyn jongbloed Disability Income Narratives of Women with Multiple Sclerosis Methods This essay is based on a subset of findings of a larger study with a qualitative and quantitative phase on employment and women with ms (Jongbloed 1996). Fifty-four women diagnosed with ms participated in the qualitative phase. They were contacted either through a ms clinic in western Canada or a local chapter of the ms Society. Of these women, thirtyone were employed and twenty-three were not employed at the time of the interviews. The mean age of those no longer employed was forty-four. The amount of time the unemployed women had been out of the paid work force ranged from several months to fourteen years. Six women had professional educations; thirteen had been employed in clerical and retail sales jobs; four had been employed in semi-skilled or manual jobs. Nine of the women were married, eight were divorced or separated, and seven had never married, and all the women lived in the Greater Vancouver area of British Columbia. This essay is based primarily on interviews with the twenty-three women who were no longer employed. Two investigators and a research assistant conducted semi-structured, in-depth interviews with these women to explore different aspects of their lives, including work experiences, income issues, housing, and personal relationships . Interviews took place in the women’s homes, ranged from one to two hours in length, and were tape-recorded, transcribed, and computerized to facilitate data coding and categorization. Intermeshing of data collection, analysis, and problem definition is an integral feature of qualitative research (Glaser and Strauss 1967; Hammersley and Atkinson, 1983). The two investigators and the research assistant identified and discussed emerging themes from the interviews they conducted and organized the themes into categories. Findings The income sources of women who were no longer employed were disability benefits from the Canada/Quebec Pension Plan (c/qpp), long-term disability insurance (employer and private), social assistance (disability benefits), and other personal income. Many women derived income from more than one source. Data analysis revealed some common themes, showing that a large proportion of the women interviewed experienced difficulties related to accessing benefits, the adequacy of benefits, other constraints, and fatigue. Each of these themes will be discussed further. 210 the larger picture Accessing Benefits To access benefits from the c/qpp, long-term disability insurance, or social assistance, applicants had to meet certain eligibility criteria and be assessed by a physician. The restrictiveness of the definition of disability in order to be eligible for c/qpp benefits was problematic for ten of the twenty-three subjects who received money from the c/qpp. A woman of twenty-six who had been working at a car rental agency said, “I’ve been getting brainstem attacks, and they affect my vision, my speech, my balance, and they make me tired and weak. At work I couldn’t take a rest if I wanted to and when I have an...