A Case Study of a Participatory Research Group

Dorothy Goldin Rosenberg Ph.D

This case study of a feminist research circle illustrates building/strengthening knowledge through critical reflection and action for personal and planetary health. Theory and praxis for promoting alternative paradigms and changing power relationships can contribute to structural change toward environmental health consciousness and social responsibility for a cleaner, safer more just and equal world.

Cetté etude d'un cercle féministe de recheche démontre le processus de construction et de renforcissement des connaissances par la réflexion critique et l'action qui mènent vers la santé personnelle et planetaire. En utilisant la theorie jointe a la pratique pour promouvoir des paradigms alternatifs et pour changer les rapports de force, l'on peut contribuer aux changements structurels qui menent vers la conscience de la santé environmentale et vers une résponsabilité sociale qui lutte pour une monde plus propre, plus sécuritaire, plus juste et plus égalitaire.

This case study of a feminist collaborative research circle evolved from a need for a better understanding of how to build and strengthen knowledge through critical reflection and action around health in its widest sense. Believing that a safe environment and health are basic human rights, the women in the circle felt that with effort, people can create the awareness and political will necessary to address these concerns within their communities, workplaces and governments. As such they contributed to education and strategies for changing power relationships and promoting alternative ways of thinking and acting. This effort is seen as a contribution to theory and practice of social, political and economic change towards environmental health consciousness and social responsibility for a cleaner, safer more just and equal world. The study is rooted in my work in education, research and policy change on these issues as a global education consultant, film consultant, researcher and active participant in interrelated social movements. This article will encompass the context of the study, the questions and beyond, the participatory research circle, some outcomes and areas for future work.

The following quote reflects the spirit of the work of the circle:

We know that learning is often worthwhile just for its own sake...But education for social change is engaged politically. This is praxis or theory in action. Those of us engaged in this praxis whether in community groups, educational institutions or broad based social movements must reflect daily on strategy. Our educational work must be we can exercise our rights and obligations...about the social impact of the learning we promote (Arnold et al., 1991:2-3).

The Context: Largely due to breast cancer epidemics, an educational transformative moment is emerging where feminist understandings of `the personal is political' are moving quickly with regard to research, learning and advocacy on health and the environment. In recent years, the increased interest and advocacy related to cancer and other environmentally linked diseases have provided an important moment in which to bring environment and primary prevention health issues into more mainstream women's, environmental, health, cancer, peace/justice, labour, anti-racism and other social movements. New generations and diverse groups of women and men are becoming engaged in these relationships of learning because of their own illness or that of their loved ones (cancers, asthma and allergies in children and other immune depletion/environmentally linked diseases). Some activists, scientists and physicians have been researching and analysing these issues, providing information and holding conferences to promote the broader engagement of people in the belief that education, advocacy and political action are crucial to preventing many of these conditions. They are demanding a shift away from the patriarchal biomedical/technological model with its largely singular focus on screening and testing (machines) and treatment (drugs) towards the inclusion of more balanced holistic indigenous and complementary medicine approaches to health. They are challenging the political economy of corporate exponential growth, pollution and waste as well as promoting a more traditional societal paradigm of respect for the earth and all species on it. The aim is to build consciousness and social responsibility for a more just, equitable and healthy society. They argue that understanding the politics of primary prevention within this framework is crucial in transformative political action for prevention.

In the Women's Network on Health and the Environment (WNH&E), I learned about power relationships relevant to this discourse. They were parallel to the critical discourse on patriarchal, military industrial corporate ecological destruction in pursuit of exponential growth and profit in the global market economy, which have been central to my concerns for peace and justice. I was interested in exploring how we might deconstruct the different phenomena of these relationships of power in order to reconstruct some pieces of the puzzle in the interests of health in the holistic sense of mind, body, spirit and earth as well as in community, institutional and political structural areas. The educator, researcher and policy change activist in me wanted to examine theory and praxis of effective ways of learning and advocacy to meet these challenges. Therefore I believed that those of us engaged in this work might benefit from a case study of an actual group learning experience to help understand how these concerns can transform us. Hence, the examination of a feminist participatory research process undertaken by a group of committed women who see health as an everyday concern, shaped by forces within our modern era which have to do with patriarchal institutional power, privilege, profit and biomedical/technological research models. We began with the belief that these models must be challenged and changed. To this end, we gathered together as researchers, learners, educators and participants already engaged within various breast cancer, environment, peace, health, prevention, advocacy groups to learn, inform and support each other individually and/or in our communities.

The term `feminist perspectives' as used here draws on ecological feminist analysis which views all of life as an interconnected web enriched by diversity. It is based primarily on the principles of a transformative feminism that critiques structures of oppression including sexism, racism, classism, ableism, homophobia and anthropocentrism. It is opposed to hierarchy, domination and violence (McAllister, 1982; Merchant, 1990; Starhawk, 1982; hooks, 1984; Shiva, 1989). This analysis critiques the mechanistic paradigm of Western industrial society often described as dualistic, reductionist, dependent on rationality and exploitative of women, indigenous and other marginalized peoples and nature. Ecological transformative feminisms go beyond the struggle for equality within current structures and challenge patriarchal hierarchal foundations of society where power is seen as domination. Integrated in this way, all forms of domination are seen as interconnected. Empowerment and participation are integral to this analysis in transforming the structures of power, in this case pressuring the cancer establishment, policymakers and the public to address environmental causality and primary prevention (Brady, 1991). In recent years the concept "women" has itself become problematic in so far as it hides the differences between different categories of women: of colour and white, working class and middle class, third world and first world, disabled and able bodied, lesbian and heterosexual, etc. (hooks, 1984; Harding, 1992). Stanley and Wise (1990) suggest that "feminism should become explicitly concerned with the multiple and continual fractures that occur between experience and categories" while recognizing that all theory is grounded in experience.

When I was trained as a health professional several decades ago, environmental relationships were not addressed, and while they are still subject to much ignorance and denial by conventional medicine, this is beginning to change. Connections between breast cancer and environmental toxins were first introduced to me by dian marino, an environmental educator with terminal breast cancer, teaching at the Faculty of Environmental Studies at York University in 1990. She believed that the initiation of her cancer occurred when she was an art student in California some 25 years earlier and was exposed to toxic solvents while cleaning metal plates during the printing process. Further reading informed me of these and related political economy links (Arditti and Schreiber, 1992). Questions were being raised by health and environmental researchers and activists that if many cancers were largely environmentally linked, could they therefore be largely preventable? Networks were forming with the Women's Community Cancer Project, WEDO, Greenpeace, WNH&E and others. Issues around the environmental determinants of health included organochlorines, pesticides, Bovine Growth Hormone (BGH), radiation, x-rays and electromagnetic fields (EMFs) and their synergistic impacts. Much is now known about safe alternatives to the use of these toxic processes. The networks were also challenging the political economy of corporate exponential growth, pollution and waste as well as promoting a more traditional societal paradigm of respect for the earth and all species on it. They were also identifying relevant political action and alternative participatory scientific research models for their particular situations. These positive initiatives continue in tandem with enormous environmental and health policy challenges (the tobacco industry is the just the tip of the corporate iceberg to contend with).

THE QUESTIONS AND BEYOND: The research questions focused on feminist processes, transformations, alternatives to medical models, the contribution to other social, political and cultural movements and how such learning can contribute more effectively to those changes in the future. They examined constraints and impediments such as ignorance, power relationships and politics of governments, corporations, the cancer establishment, the media, cultural barriers and the not unrelated lack of funding for groups who challenge the status quo.

THE CIRCLE, HOW WE LEARNED: We learned by talking, thinking, feeling and doing, starting from where each was in her own awareness and knowledge. We found that some of the most effective ways and means of educating ourselves and others included telling stories, sharing experiences, developing skills, producing materials, networking information and resources of all kinds. We used a wide variety of processes to draw out knowledge and analysis. These included conferences, community meetings, contributing ideas for the video, Exposure, then under way, a concert, art, contributing to Connections, the WNH&E newsletter and numerous other activities. We examined feminist strategies for action, new models in science, research and health policy, feminist economics, community health audits and other alternatives to conventional health promotion programs. We spoke to policy makers, made deputations, wrote letters, worked with educational institutions, multicultural communities, with labour and the Board of Health. We drew on women's ways of knowing in tapping into our motivations, hearts and minds, concerns for our children and grandchildren; concerns about health and the social impacts of illness like cancer on whole families.

We discussed what was useful, our frustrations and limitations and how we might have been more effective. We recognized that as we became more engaged with each other, we were energised to develop our knowledge base, confidence and organizing skills. Friendship, caring, camaraderie, networking and encouragement in each one's work became key beneficial aspects of our being together. We reflected the true meaning of "gossip" which means women telling stories, sharing information and planning activities around mutual concerns. In the beginning, we came together as concerned women in our early stages of analysis and advocacy. What was added was support, knowledge, encouragement and experience in our transformative process.

We promoted the "precautionary principle" which calls for consideration of "weight of evidence" of a problem rather than the demand for absolute scientific proof that a particular contaminant causes a specific condition. This principle states that if we are to err, it should be on the side of caution and that lack of full scientific certainty shall not be sufficient reason for postponing preventive or remedial measures (IJC, 1994 and 1996).

WHAT WE LEARNED: We learned to identify institutionalized power relationships in order to integrate long term planning, educating and goal setting, while organizing and implementing immediate campaigns. We learned about linking different oppressions, of the needs and values of immigrant and other cultural communities and about new issues. Race, class, culture and gender issues were raised frequently. There were often references by all of us to the marginalization we felt as women. We also noted historical and current environmental injustice to indigenous peoples and the need to listen to their values relating to the earth and seven generations hence. Examples of our learning included one woman integrating her cultural and ecological values to become actively engaged in prevention in cultural communities; one developing her knowledge and skills in her work with the Multiracial Network for Environmental Justice (MNEJ); another becoming strengthened and empowered to organize a major conference and to foray into scientific circles and breast cancer organizations; another in the development and sharing of her professional journalistic and media skills with all of us; another in skills development in popular adult education processes regarding health and primary prevention; and together as a group, learning how to better incorporate them into our work, in particular with popular adult educational workshops with the film, Exposure. We had moments of emotional highs and lows, in the latter case, where we learned how despair, grief and anger can be confronted, experienced and creatively channelled into new energy and creativity. This was demonstrated in our learning about working with breast cancer survivors. We also learned that it is important to find and engage good people in the establishment medical community and encourage them work from within in whatever ways are best for their particular organization or institution.


Thinking of primary prevention and alternatives together, seeing the use of complementary and or indigenous medicine (detoxification and building up the immune system with essiac, herbal, vitamins etc.) are seen as challenging the status quo. However, we felt that while people are looking at their diets and taking supplements, by the same token they need to take the next step, ask why the toxins are there in the first place and examine the way we grow our food and process it. Some highlights from `Beyond the Questions' included One: learning and praxis for primary prevention with women living with breast cancer, including those in cultural communities. It emphasized prevention of recurrence and learning holistic approaches beginning with practical things they can do in their own lives when they are emotionally ready, and refraining from mixing support and advocacy at the same time; Two: the collective process of creating the resource guide, Taking Action for a Healthy Future (to accompany the video, Exposure: Environmental Links to Breast Cancer). This encompassed a community screening of the roughcut of the video with small group brainstorming ideas for content, the circle reviewing these findings, and their final editorial approval. This process was followed by the development of "Training Trainers" Workshops with the film to help build skills and confidence to enable people in diverse communities become "multipliers" for the personal and policy work needed; Three: promotion of the Recommendations of the Ontario Task Force Report on the Primary Prevention of Cancer, a document central to our work. Its recommendations included advocacy toward policy change, with which any group can become familiar such as creating a broader community including health professionals, politicians and social movement actors to engage in these concerns with decision makers.

More research is needed on: synergistic combinations of toxins in food and the environment, including past fallout from nuclear weapons testing all compromising the immune system; immune system related conditions such as fibromyalgia, chronic fatigue, childhood diseases; more about EMFs and the potential effects on the tamoxifen treatments being given to women with breast cancer; public accountability. Community based research needs to be encouraged and legitimized among scientists so that their findings can be utilized in prevention policy and remediation; a meta analysis of all available research on environmental carcinogens is needed to inform mainstream medicine of government sponsored research on environmental links to various diseases. Despite electronic communication, there are many health professionals who are not familiar with the work of the International Agency for Research on Cancer (IARC) of the World Health Organization and many others who are in the vanguard of this field. Education is needed in teachers's colleges; high schools; health organizations; medical and nursing school curricula; Cancer Care Ontario, policy makers; labour; anti-racism groups (environmental justice), medical journalists; work on economic literacy ie. encouragement of mutual funds in ethical investments for RRSP's rather than corporate polluters; to transfer funds to credit unions where possible to support community initiatives; to stop corporate polluters and pressure for change to be worker positive.

The activities of the circle were not seen as specific recipes for feminist transformation, rather they were examples of opportunities for praxis. It is hoped that this study can contribute to transformative learning from feminist perspectives on primary prevention; the understanding of some findings of a feminist participatory research process; and a sense of how social movements can be more effective toward these ends. As many of these relationships are still in formative stages, further work is needed to develop such integrative transformative learning on health.


Arnold, R., Burke, B., James, C., Martin, D. and Thomas, B. Educating for a Change, Toronto: Between the Lines and the Doris Marshall Institute, 1991.

Arditti, R., and Schreiber, T. "Breast Cancer: The Environmental Connection", Resist Magazine, May/June, 1992.

Brady, J. One in Three: Women with Cancer Confront an Epidemic. San Francisco: Cleiss Press, 1991.

Goldin Rosenberg, D. Taking Action for a Healthy Future (guide to accompany the video, Exposure: Environmental Links to Breast Cancer). Women's Network on Health and the Environment, Toronto, 1997.

Hooks, b. Feminist Theory, From Margin to Center. Boston: South End Press, 1984.

McAllister, P. Reweaving the Web of Life: Feminism and Non Violence. Philadelphia: New Society Publishers, 1982.

Merchant, C. The Death of Nature: Women, Ecology and the Scientific Revolution. Toronto: Harper and Row, 1990 edition.

Recommendations for the Primary Prevention of Cancer:Recommendations of the Ontario Task Force on the Primary Prevention of Cancer. Toronto: Ministry of Health, 1995.

Shiva, V. Staying Alive: Women, Ecology and Development, London: Zed Books, 1988.

Stanley, L. and Wise, S. Breaking Out Again, Feminist Ontology and Epistemology. London: Routledge, 1990.

Starhawk. Dreaming the Dark, Magic, Sex and Politics. Boston: Beacon Press, 1982.

Harding, S. "Rethinking Standpoint Epistemology: What is Strong Objectivity?" in the Centennial Review, 36, 3, Fall, 1992, pp. 437-470.

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Prepared August 3, 1999 by the ACÉÉA/CASAE Internet Working Group