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Reduce Differences in Health Status Build Healthy Public Policy Strengthen Community and Personal Action
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The Midlife Health Needs of Women with Disabilities Marina Morrow, British Columbia Centre of Excellence for Women’s Health
The social experience of living with chronic illness and disability is neither gender nor context neutral.¹ Disabilities, including chronic illnesses, occur in a social context. Yet, traditional science methodologies have generally studied disability as a physical phenomenon only, ignoring the impact of determinants such as gender, race and socio-economic circumstance on the development and experience of disabilities. This is evidenced in the literature’s focus on conditions that mostly affect men (e.g., spinal cord injuries) and by the fact that conditions primarily affecting women (e.g., chronic fatigue syndrome and fibromyalgia) are sometimes even questioned as to their very existence.² That men and women might experience disability differently has not been addressed comprehensively in the literature to date. In the past decade there has been an information explosion in the area of ageing and menopause,³ reflecting an increasingly older population, the majority of whom are women. 4 In traditional forms of research and in the emerging body of feminist research, there remains an information gap about the health needs of women with disabilities during menopause. Speculations about why this gap exists include the tendency in the literature to desexualize women with disabilities and hence to ignore their reproductive health and sexuality. Women with disabilities are often reduced to their disability by health practitioners, which may mean that their other health issues are overlooked. Finally, feminist approaches to menopause that emphasize empowerment and women’s choices often disregard the fact that women with disabilities may face very different challenges at midlife than their non-disabled counterparts. These challenges are often directly related to gaining or maintaining autonomy in situations where some amount of dependency on others is necessary. A study conducted by the Pacific DisAbled Women’s Network (DAWN) and the British Columbia Centre of Excellence for Women’s Health set out to explore women with disabilities’ experiences of menopause. The research team was comprised both of women who had a disability and those who did not, and had representation from both academics and community-based disability activists. Actively involving women with disabilities as researchers and advisors promoted a substantial dialogue with respect to the way in which disability has been traditionally defined in research, and led to a commitment to involve women with developmental disabilities. Specifically, the research was designed to explore the interconnections between physical, psychological and social determinants of health. The researchers were interested in women’s physical health changes during the perimenopausal and menopausal periods, as well as the social and life changes that women generally experience during that time of their lives (e.g., children leaving home, divorce, increased poverty, the death of loved ones, increased caregiving responsibilities as parents age). Interviews were conducted with 39 women with physical disabilities and chronic illnesses. Twelve interviews were conducted with women with developmental disabilities and their caregivers. The resulting data showed that the women’s lives were marked by significant events during the midlife period at the same time that they struggled with their disabilities. These two themes were often linked; many women had gone through transitions in their personal and social relationships during their midlife years due to the progression of their disabilities. For other women, disabilities began either during or around the time of menopause or after a significant experience during midlife. What was most pronounced was that women in this study could not easily attribute the physical and emotional changes they were experiencing to their disability, to the process of menopause, or to other midlife changes. This finding reflects the complexity of the relationship between disability, midlife and menopause and underscores how little is known about their inter-relationship. However, it was clear that social context was critically important to how women experienced their disability and menopause. Women spoke especially about the financial and social barriers they encountered as a result of disability. Women described themselves as struggling to make ends meet after partners left them and about how difficult it was to survive on disability pensions. In particular, financial restrictions meant that women could not avail themselves of proper nutrition, vitamins, exercise equipment and alternative therapies that might have eased the symptoms they experienced as a result of menopausal changes. Social isolation and the loss of intimate relationships were other predominant themes in the interviews. Women repeatedly indicated that they needed more social support, including caring partners and groups where they could talk to other women experiencing similar difficulties. Often, the physical difficulties women experienced as a result of their disabilities could not be distinguished from the physical changes they experienced during menopause. This reflects a lack of information about the specific interactions between particular disabilities and menopause. Women were clearly not getting this kind of information from medical practitioners, from the popular media or from specialized women’s health packages on menopause and midlife changes. Our study highlights the methodological challenges associated with designing studies that examine the physical, psychological and social determinants of health. It also stands as an example of the rich information that is mined when using such an approach, and holds out the possibility that the utilization of similar methodologies for further studies on disability and menopause will yield a more comprehensive understanding of women’s experiences and their midlife health needs. For a copy of the full report contact: NOTES |
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