In Sickness and Employment: Women Living and Working with Chronic Illness

This article reports on a study of women with chronic illnesses and their relationship to the workforce in Winnipeg, Manitoba. Workplace accommodation for disabilities is posited as a key concern, and new paradigms for work that would allow the women to participate without marginalization are explored.I lived in a healthy body for 32 years. I always had a job. I always went to school. I always volunteered on boards and committees. My body was forever and ever. Then, one day, I got sick. And thought: are sickness and employment contradictory terms? It appeared so.After I acquired a chronic illness, fibromyalgia, eight years ago, I found that my ways of working needed to be adapted, that I needed to think about workplace accommodations. That is, how could I go to work with my chronic fatigue and pain? I found that it was trial and error--it wasn't easy. Sometimes I had no clue of how to get around the chronic fatigue and pain associated with fibromyalgia. I looked to others, who had different conditions from me, but some similarities. I hung on by my chinny chin chin and supported myself in part-time employment that allowed me to rest when needed. didn't employers want me to work at home, or lie on the couch in the office at coffee break, or have flexible hours? did I have to fit into that eight-hour day at the desk? How were other women with chronic illnesses supporting themselves? Did they know strategies I didn't?I looked for articles and books written about chronic illness and how to reconfigure, or accommodate, the workplace. I found little available. There were studies about people who had more visible disabilities, who were wheelchair users or who were blind, but little on chronic illness, let alone on women and chronic illness. I knew that the Canadian Human Rights Code and the Manitoba Human Rights Code called for employers to make accommodations for the needs of people with disabilities, as long as it did not cause undue economic hardship for the employer. But how did this work for people with chronic illness?I wanted to find answers to my own questions and to solve my work dilemma, so I embarked on a study of women with chronic illnesses in Winnipeg, Manitoba, some with jobs, others not. Together, we explored the questions, Why not? me? And do I want to work at all or can I at all? In the end, there are solutions to the employment situation of women with chronic illness -- though it needs a new paradigm in society and redefinition of what we call accommodation.Who is Chronically III?The women in this study have chronic illnesses such as diabetes, chronic fatigue, arthritis, fibromyalgia -- conditions that go up and down in severity, conditions that make you and also disable you to varying degrees. Women so often experience chronic illnesses that arise out of their stressful lives as members of the non-dominant group: able-bodied men being the dominant group. Women with disabilities overall are some of the poorest in Manitoba. In 1991, 65.5% of women with disabilities working full time earned less than $25,000 per year, compared with 38.4% of their male counterparts.(1) In addition, the Health and Limitations Survey in 1991 shows that 66% of women with disabilities have an annual income of less than $15,000 and 53% live on less than $10,000. Only 40.7% of women with disabilities work.(2)Chronic illness is also associated with disability in that it disables in various ways, depending on whether the illness is flaring up, on weather conditions, and on the life stressors people are experiencing. Many women with chronic illness view themselves as disabled and some do not. Many people who have more stable disabilities like paraplegia, blindness and amputations do not want to be seen as people. In the early days of the disabled persons' movement, people with disabilities said they were not at all. They rejected the sick role, as Jim Derksen, a Canadian disability activist wrote: [In the role] the 'patient' or 'sick' disabled person is allowed and even expected to behave in a childlike manner. …

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