Women and Disability: Research on/by/for/with Women with Disabilities

There are several research articles throughout this bibliography; however, this brief listing includes articles that address women and gender in the research process, recognize the lack of women in medical research as well as those that reference or make use of particular research methodologies, philosophies, or theories in studying women with disabilities.

Beery, T., Sommers, M. S., & Hall, J. (2002). Focused life stories of women with cardiac pacemakers. Western Journal of Nursing Research, 24(1), 7-27.

Biotechnical devices such as cardiac pacemakers are implanted into people to manage a range of disorders, yet comparatively little is known about the emotional impact of this experience. Women may have a unique response to implanted devices due to cultural messages about the masculinity of technology. In this qualitative study using Hall’s focused life stories design, 11 women from teenagers to elders with permanent cardiac pacemakers were asked to describe their experiences using semistructured interviews. The themes that emerged are relinquishing care, owning the device, experiencing fears and/or resistance, imaging the body, normalizing, positioning as caretaker, finding resilience, and sensing omnipotence. Understanding what it means for women to live with an implanted biotechnical device may facilitate planning interventions to support their psychological and physiological health. Effective pacemaker function may depend, in part, on recipients’ successful emotional attachment to the device.

Broun, L., & Heshusius, L. (2004, Spring). Meeting the abled?/disabled? self when researching the lives of disabled women. In B. Haller & C. Kirchner (Eds.), Theme: Education and Disability Studies. Disability Studies Quarterly, 24(2). Retrieved September 7, 2005 from http://www.dsq-sds.org/_articles_html/2004/spring/
dsq_spr04_broun-hesh.asp.

Offered is a reprocessing of the methodological decisions made in a graduate student’s (first author) thesis, tracing her slowly evolving journey through qualitative possibilities in methodology, coming to understand that a choice for a particular methodology is actually a choice for a particular other/self relation. At a still deeper level, this process led to the sudden and painful realization that the needs, fears, and desires of the (often conflicting and shifting) self informs the contours of the other/self relation and thus limits what dares to be gained from the research process. This journey played itself out within a focus on the educational and career achievements of disabled women with the first author including herself as a participant. While the inclusion of herself seemed a natural thing to do, it forged in the end a major, painful and unforeseen confrontation between her imagined ‘normal’ self she had habituated herself to believe in, and her limping disabled self as she appeared to the world (and at a ‘realistic’ level through the world’s eyes also to herself). Questions are raised about the ongoing upset that occurs when a researcher/participant honestly confronts the configuration of the self in the research process.

Also published in the same issue is a response paper, “Identity, Positionality and Power: Issues for Disabled Researchers – A Response Paper to Broun and Heshusius,” by Claire Tregaskis (http://www.dsq-sds.org/_articles_html/2004/
spring/dsq_spr04_tregaskis.asp).

Burell, G., & Granlund, B. (2002). Women’s hearts need special treatment. International Journal of Behavioral Medicine, 9(3), 228-242.

Coronary heart disease (CHD) is the leading cause of death for both men and women in the Western world. Some studies show that the observed decline in cardiovascular mortality is not as pronounced among women as among men. There is a growing awareness that most earlier studies both on primary and secondary risk factors, diagnosis, prognosis, and rehabilitation have focused mainly on men. Thus, there is a need to develop knowledge about women with CHD and to address gender issues in treatment and rehabilitation strategies. Negative affect and emotions increase risk and may interfere with effective cardiac rehabilitation. Therefore, methods for coping with emotional stress need to be included in treatment regimens after a coronary event. The feasibility of a stress management program for women with CHD was assessed in a pilot study. The program consisted of twenty 2-hr group sessions during 1 year, with 5 to 9 participants per group. The pilot study showed that this treatment program had a low dropout rate and resulted in improvement in quality of life and reduction in stress and symptoms. Further work to optimize psychosocial interventions for women with CHD is needed.

Charmaz, K. (1999). Stories of suffering: Subjective tales and research narratives. Qualitative Health Research, 9(3), 362-382.

The following analysis addresses relationships between suffering and the self. It emphasizes subjects’ stories of experiencing chronic illness and their relationship to the construction of self. A symbolic interactionist perspective informs the analysis. Topics include forms of suffering, the moral hierarchy of suffering, relationships between gender and moral status in suffering, and meanings of subjects’ stories. The major argument is that suffering is a profoundly moral status. Placement in the moral hierarchy of suffering affects whether and how an ill person’s stories will be heard.

Crooks, D. L. (2001, January-February). Older women with breast cancer: New understandings through grounded theory research. Health Care for Women International, 22(1-2), 99-114.

Breast cancer incidence increases by decade of life, significantly affecting the lives and well-being of older women. In a critical analysis of three decades of quantitative and qualitative research literature. I found an indication that something changed over the course of time that allowed women to adjust to breast cancer and resolve emotional turmoil. However, it was not clear what was “adjusted,” or what constituted the process that allowed women to restore meaning within illness. In this paper I discuss the benefits of using a grounded theory approach in the study of older women with breast cancer. A brief overview of the study is given for context. The main focus of this paper is on the contributions of grounded theory research to new understandings of the cancer experience for older women. Contrary to findings in the quantitative literature, this study raised awareness of several issues: the myth of burden in researching older women, willingness to participate in decision making around treatment, ageism, and positive collusion in communication with health professionals.

Danieli, A., & Woodhams, C. (2005, October). Emancipatory research methodology and disability: A critique. International Journal of Social Research Methodology, 8(4), 281-296.

This paper questions the prescription of emancipatory participatory research for studying disability espoused by some disability researchers and activists. The paper argues that the advocacy of participatory and emancipatory research can be criticised on several grounds including problems of internal inconsistency and contradiction, an overly selective use of the works of feminist researchers and that research using such an approach could constitute an exercise of power that potentially marginalises some voices and potentially oppresses some disabled people and researchers. Ultimately, it is suggested, the emancipatory paradigm may serve to undermine the generation of knowledge that can be used by disabled people for self-emancipation. The paper concludes that rather than prescribe emancipatory research as the only legitimate methodology for disability research, disability writers should, as feminists have in researching gender, adopt a more pluralist and eclectic approach to theorising and researching disability.

Dodge, J. A., Janz, N. K., & Clark, N. M. (2002). The evolution of an innovative heart disease management program for older women: Integrating quantitative and qualitative methods in practice. Health Promotion Practice, 3(1), 30-42.

Few studies in the literature describe how to combine quantitative and qualitative methods to enhance the development of health education interventions. This article describes the evolution and refinement of an innovative disease management program “take PRIDE” for older adults with heart disease. Over 15 years, information obtained from data collection methods including telephone interviews, focus groups, face-to-face interviews, and program process data illuminated and guided subsequent refinement of the program and led to new iterations for different participants. Qualitative and quantitative data were incorporated into two key areas of program development (theoretical framework, objectives, format, and content) and evaluation (evaluation design, sampling, and measurement). Combining both types of data enhanced the opportunity to detect needed program changes, to increase understanding of the mechanisms by which the program effects were produced, and to enhance the relevance of the program to different groups of program participants.

Fine, M. (2005, October). Dependency work: A critical exploration of Kittay’s perspective on care as a relationship of power. Health Sociology Review, 14(2), 146-160.

The emergence of a specialised field of care research is a relatively recent development, owing much to feminist scholarship and the increasing prevalence of women in the public domain. This paper briefly outlines two of the most influential approaches to the more general field of care research, comparing them with research on professional relationships in formal health care settings. While gender operates as an explanatory factor in each of these approaches, issues of power and domination, which feature strongly in the health sociology literature, are largely avoided in the research on care. Kittay’s approach to the theory and analysis of care is a notable exception. Using her recent work as a central focus, this paper explores the social position of care givers and receivers. Examining the nature of power within and surrounding care relationships, Kittay makes an important distinction between the inequality of power and the exertion of domination. Her argument has much to offer sociological research in the field of care, but her avoidance, and at times, confusing use of the concept of ‘care’, and of the terms ‘power’ and ‘dependency’, present some difficulties. To clarify the potential of her contribution, a critique is offered which compares her approach to the analyses of power by Lukes and Foucault.

Gibbs, R. W., & Franks, H. (2002). Embodied metaphor in women’s narratives about their experiences with cancer. Health Communication, 14(2), 139-165.

Many scholars and medical professionals argue over the importance of metaphor in thinking about, and speaking of, cancer and other illnesses. Our study presents an analysis of the metaphors used by 6 women in their narratives of their experiences with cancer. We claim from our analyses that metaphorical talk about cancer reflects enduring metaphorical patterns of thought. Women used multiple, sometimes contradictory metaphors to conceptualize their complex cancer experiences. Many of their metaphors used to understand cancer are actually based on ordinary embodied experiences such that people still refer to the healthy body in trying to understand cancer even when their own bodies have been disrupted. We discuss the importance of our findings for understanding the relation between language and thought in regard to human illness.

Harrison, T. C., & Stuifbergen, A. (2005, September). Hermeneutic phenomenological analysis of aging with a childhood onset disability. Health Care for Women International, 26(8), 731-747.

In this qualitative study, we combined multiple interviews, field notes, life history review charts, and demographic questions to explore the life course experiences of 25 women, ages 55 to 65 years, who developed impairments due to paralytic polio during childhood. Based on a hermeneutic phenomenological methodology using thematic analysis, multiple themes emerged that traced their lives from childhood to later adulthood. The women described how they pushed their bodies and dismissed their physical decline as long as possible. The women’s early experiences combined with the culturally defined role expectations for women to influence their perceptions of how to react to changing physical abilities with age.

Hole, R. D. (2004). Narratives of identity: A poststructural analysis of three Deaf women’s life stories. Unpublished doctoral dissertation, The University of British Columbia.

This study explored the influence of hearing loss on identity. Phrased in constructionist terms, the research questions guiding this study were how do culturally Deaf women perceive the influence of hearing loss as they construct their identities? And how do they incorporate, resist, and/or reject various cultural discourses as they go about the creative act of constructing their identities? The participants were three adult women with prelingual hearing losses. All three participants were raised in hearing-oriented environments where auditory/oral communication was used and as adults identified as culturally Deaf. A collaborative narrative method was used and in-depth interviews that elicited life stories were conducted with the participants. Sign language was used during the interviews. The interviews were videotaped, then interpreted to spoken English by the researcher, and then subsequently transcribed. The research interviews provided rich, descriptive data that were used to create a narrative summary of each participant’s life story. The researcher collaborated with each participant around the representation of her life story in narrative form. The narrative summaries illustrate the complex, textured, and multilayered ways in which each of the participants constructed identity in their life stories, where identities competed, co-existed, and overlapped. In addition, drawing on poststructural ideas the researcher analyzed four cultural discourses at work in the participants’ narratives: discourses of normalcy, discourses of difference, discourses of passing, and Deaf cultural discourses. It was found that a binary relationship existed between discourses of normalcy and discourses of difference leading to the construction of identities based on opposites. These identities were positioned in a binary relationship where one side of the binary was privileged and the opposite was “othered,” e.g., hearing/deaf, and Deaf/deaf. However, the poststructural narrative analysis demonstrated that these categories were not fixed, but rather, that hearing status was a complex, unstable identity category, reflecting shifting identities and positionalities. The findings are discussed in relation to empirical literature on deafness and identity. The study concludes with suggestions for professionals, with a discussion of methodological implications, and with a discussion of future research possibilities.

Kvingne, K., & Kirkevold, M. (2002). A feminist perspective on stroke rehabilitation: The relevance of de Beauvoir’s theory. Nursing Philosophy, 3, 79-89. Retrieved March 31, 2005 from http://www.blackwellpublishing.com/pdf/nup_kvigne.pdf.

The dominant view of women has changed radically during the last century. These changes have had an important impact on the way of life of women in general and, undoubtedly, on women as patients. So far, gender differences have received little attention when developing healthcare services. Stroke hits a great number of elderly women. Wyller et al. found that women seemed to be harder hit by stroke than men; they achieved lower scores in tests of motor, cognitive and ADL functions, both in the acute phase and 1 year after stroke. It is reasonable to expect that differences in outcome among male and female sufferers may in part be explained by the fact that rehabilitation services are designed primarily to meet the needs of men. de Beauvoir’s feminist theory maintains that one’s body is fundamental in creating the person, which is a lifelong process. Traditionally, the female body has been exposed to alienation and oppression through life. This has led women to develop a life in immanence. This we feel can be of significance in connection with rehabilitation after a stroke, particularly for elderly women. In this article we will discuss how de Beauvoir’s theory can throw new light on the experiences and rehabilitation of elderly women and point to ways of improving the process of rehabilitation.

Kwiotek, R. G. (2002, December). Disability, gender and power: Finding a useful theoretical framework and an appropriate methodology. Paper presented at Using Emancipatory Methodologies in Disability Research, NDA Disability Research Conference 2002, Dublin, Ireland. Retrieved March 2, 2005 from http://www.nda.ie/cntmgmt.nsf/0/87418679FAE58B0E80256F02004753E9/$File/Disability,%20Gender%20and%20Power%20-%20%20Finding%20a%20Useful%20Theoretical%20Framework%20and%20an%20Appropriate%20Methodology.htm.

“This paper will describe the process of developing a theoretical framework and identifying an appropriate methodology for researching complex, multi-dimensional power structures, exploring and revealing the absence of the voices and concerns of Irish disabled women from two social movements in Ireland, i.e. the women’s movement and the disability movement. The shortcomings and limitations of the social model of disability will be addressed from a feminist-disability-theory perspective and possible alternative approaches will be suggested.”

Lunn, M., & Munford, R. (2007). “She knows who she is! But can she find herself in the analysis?”: Feminism, disability and research practice. Scandinavian Journal of Disability Research, 9(2), 65-77.

As non-disabled researchers carrying out feminist research with disabled women, we enter the research arena on the coat-tails of identity, power relations and politics. In this article we present an analysis of power relations in the researcher/participant relationship. The politics of identity is an important component of this analysis. Drawing from a study undertaken with six disabled women, we suggest that the use of research methods that begin from and, are informed by, the participation of those being researched, are likely to produce results that are more representative of the participants’ lived realities.

National Council for Research on Women. (2004, March). MISSING: Information about women’s lives. New York: Author. Retrieved June 6, 2005 from http://www.ncrw.org/misinfo/report.pdf.

MISSING: Information About Women’s Lives is a 24-page report that documents how crucial data on women and girls is disappearing. It “concentrates on missing information–information that directly affects women’s lives. Vital data have been deleted, buried, altered, or otherwise gone missing from government websites and publications: priorities have changed, funding cut, research findings distorted, important social differences masked, critical committees and programs dismantled.”

National Women’s Health Resource Center. (2005). First annual health survey: Women talk. Red Bank, NJ: Author.

First Annual Health Survey: Women Talk presents findings from a national telephone survey of U.S. women ages 18 and older conducted in March 2005 to explore women’s knowledge about, attitudes toward, and perceptions of their health. The executive summary, published by the National Women’s Health Resource Center (NWHRC), presents key findings on women’s roles as health managers, their awareness of and attention to their own health, health information resources, and health perceptions by race and socioeconomic status. NWHRC is also launching an educational initiative based on the survey findings called Take 10 to T.A.L.K. The campaign features a wallet-size card (in English and Spanish) with four questions that women should ask when visiting their health professionals. The press release, executive summary, wallet card, and other information are available at http://www.healthywomen.org/womentalk/index.html.

Neill, J. (2005). Exploring underlying life patterns of women with multiple sclerosis or rheumatoid arthritis: Comparison with NANDA dimensions. Nursing Science Quarterly, 18(4), 344-352.

In Newman’s theory, disease is one of many manifestations of underlying pattern and its existence provides meaningful information about person-environment interactions. Underlying patterns manifest differently over time, so clues to their understanding can be found within life stories. Further interpretation subsequent to illustrating expanding consciousness for seven women living with multiple sclerosis or rheumatoid arthritis suggested six underlying patterns expressed in theoretical terms as energy-fatigue, giving-receiving, rejecting-accepting, vulnerability-resilience, control-release, and being silent-speaking out. Discussion and comparison with the North American Nursing Diagnosis Association’s dimensions for assessment of human response patterns illustrates how nurses caring for women could identify and use underlying patterns in practice.

Noonan, B. M., Gallor, S. M., & Hensler-McGinnis, N. F. (2004, January). Challenge and success: A qualitative study of the career development of highly achieving women with physical and sensory disabilities. Journal of Counseling Psychology, 51(1), 68-80.

This qualitative study examined the career development experiences of 17 highly achieving women with physical and sensory disabilities. Interviews were conducted and data were analyzed using modified grounded theory strategies (A. L. Strauss & J. Corbin, 1998). The emergent theoretical model was conceptualized as a system of influences organized around a core Dynamic Self, which included identity constructs (disability, gender, racial/ethnic/cultural), personality characteristics, and belief in self. Myriad contextual inputs included Developmental Opportunities (education, peer influences), Family Influences (background and current), Disability Impact (ableism, stress and coping, health issues), Social Support (disabled and nondisabled communities, role models and mentors), Career Attitudes and Behaviors (work attitudes, success strategies, leadership/pioneering), and Sociopolitical Context (social movements, advocacy). Implications for theory, research, practice, and policy are discussed.

Porter, C. L., Christian, L., & Poling, A. (2003, April). Research brief: Some data concerning the reporting of participants’ gender in the mental retardation literature. Mental Retardation, 41(2), 75–77.

The gender of participants in articles published from 1991 through 2000 in eight journals relevant to mental retardation was determined. Overall, participants were used in 65% of the articles; gender was not reported in 26% of them. When gender was reported, 6%, 8%, and 60% of the investigators used females only, males only, and both sexes, respectively. Unless gender is reported, one cannot ascertain to whom results should generalize or whether gender affects the variable under investigation. For these and other reasons, we recommend that researchers routinely specify how many of their participants are males and how many are females. This information requires little space and in most cases is easy to obtain.

Rice, C. (2009). Imagining the other? Ethical challenges of researching and writing women’s embodied lives. Feminism & Psychology,19(2), 245-266.

Feminists influenced by post-conventional and critical perspectives confront a significant challenge when researching women’s embodiments: the dilemma of representation. For researchers from positions of bodily privilege, issues of interpretation intensify when researching and writing across physical differences distorted by colonial and other hegemonic histories and legacies. In this article, I draw from interviews with diversely embodied women to discuss difficulties encountered in interpreting their narratives of embodiment. I reflect on strategies of embodied engagement, including de-centring my bodily self, re-visiting my body story, and imagining the other’s embodied experiences in the creation of provisional meanings about participants’ bodies and lives. To shed light on risks and rewards of researcher-embodied reflexivity to study sensitive subjects such as appearance and difference, I show how analysing my `body secrets’ invites deeper exploration into dynamics of bodily privilege and abjection underpinning women’s accounts. I conclude by questioning the ethics of my `imaginative leap’ into other/ed women’s lives and by considering more broadly the perils and possibilities of traversing the space between self and other, and other in the self, within feminist research.

Samuels, E. (2002, Fall). Critical divides: Judith Butler’s body theory and the question of disability. In K. Q. Hall (Ed.), Feminist Disability Studies [Special issue]. NWSA Journal, 14(3), 58-76.

Until 1999, major works in disability studies tended to ignore the influential body theories of Judith Butler, or to argue that her theories relied upon the disabled body as a constitutive Other. Between 1999 and 2001, however, a number of works have appeared which apply Butler’s theories to disability. I consider both the original disregard for Butler and her recent adoption in disability studies to shed light upon possibilities for developing integrated feminist disability theory and praxis in the future. I suggest that applying Butler’s theories to disability should take place in a contextualized and critical mode, and that substituting disability for Butler’s own terms of sex or gender without fully considering the implications of such a substitution may obscure important differences between identity-categories. Finally, I challenge feminist and gender theorists such as Butler to include and account for the disabled body in their future work.

Scior, K. (2003, October). Using discourse analysis to study the experiences of women with learning disabilities. Disability & Society, 18(6), 779-795.

There has been a steady rise in interest in qualitative research methods in the area of learning disability over recent years. Discourse analysis has found relatively little use though, particularly in studying the experiences of people with learning disabilities directly, rather than the accounts of non-disabled informants. The present study used a discourse analytic approach in examining the accounts of women with learning disabilities, in order to arrive at an understanding how they position themselves in relation to gender and disability. The results indicate that, while the learning disability literature and services are largely ‘gender blind’, for women with learning disabilities gender and disability cannot be separated. Instead, they may be faced with marked contradictions and dilemmas when they position themselves within dominant discourses of gender, while also subject to powerful discourses of disability.

Thorne, S., McCormick, J., & Carty, E. (1997, January-February). Deconstructing the gender neutrality of chronic illness and disability. Health Care for Women International, 18(1), 1-16.

Although a great deal has been written in the fields of women’s health and disability/chronic illness, there is surprisingly little cross-fertilization. The dominant narrative within society orients us toward a view of chronic illness and disability that is gender neutral and devoid of social context. Examination of the ways in which chronic illness and disability are differently experienced by men and women creates a foundation upon which the implications of the dominant narrative can be explored. In this analysis, the authors find clinical, sociopolitical, and theoretical implications that derive from the traditional reluctance to consider the intersection of these fields of study. They conclude with recommendations for broadening our vision, correcting the omissions within our knowledge, and rethinking our part in contributing to inequities within society.

Wight-Felske, A. (1990). Research by/for/with women with disabilities. Toronto: The Roeher Institute.

This publication has been written to raise the awareness of researchers to the issue of disability and to give a voice to women with disabilities. Specifically, it outlines the ways in which women with disabilities have been excluded from research, provides a framework for research for and with women with disabilities, presents a guideline for non-stereotyping language, and also addresses the ways in which people can be informed about women and disabilities.