Living the Edges: A Disabled Woman's Reader
edited by Diane Driedger

Print: 978-1-926708-17-1
ePUB: 978-1-926708-32-4
PDF: 978-1-771330-15-2

364 Pages
November 01, 2010
Non-Fiction Academic All Titles

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Living the Edges: A Disabled Woman's Reader edited by Diane Driedger

This important and ground-breaking collection brings together the diverse voices of women with various disabilities, both physical and mental. Here, Canadian women speak frankly about the societal barriers they encounter in their everyday lives due to social attitudes and physical and systemic inaccessibility. They bring to light the discrimination they experience through sexism, because they are women, and through ableism, because they have disabilities. For them, the personal is definitely political. While society traditionally views having a disability as "weakness" and that women are the "weaker" sex, this collection points to the strength, persistence, and resilience of disabled women living the edges.

"Living the Edges: A Disabled Women's Reader reaches the core of every disabled woman's experience and helps us understand the culture and politics of being a disabled woman. Finally, the voices, the stories, of women with disabilities are being heard! This book takes us on an extraordinary journey of pain and powerlessness but, more importantly, strength, endurance and hope."
—Emily Ternette, Chairperson, DisAbled Women's Network (DAWN) Manitoba

Living the Edges: A Disabled Women's Reader

Diane Driedger has written extensively about the issues of women and people with disabilities over the past 30 years. Her book The Last Civil Rights Movement: Disabled Peoples' International was published in 1989. She has co-edited two international anthologies by disabled women and, most recently, co-edited with Michelle Owen, Dissonant Disabilities: Women with Chronic Illnesses Explore Their Lives (2008). Diane is an educator, administrator, activist, a visual artist and poet, and holds a Ph.D. in Education. She lives in Winnipeg.

Contributors:

Jancis M. Andrews was born in the uk in 1934. At fourteen years of age she ran away from her violent home and refused to return to school. In Canada, she enrolled in grade nine, finally obtaining a bfa from the University of British Columbia. She is the award-winning author of Rapunzel, Rapunzel, Let Down Your Hair and Other Stories and Walking on Water and Other Stories. Jancis is a community volunteer living in Sechelt.

Joy Asham is a Cree Storyteller and Storymaker and a cultural activist. Before being slowed down by disabilities, she was an exuberant performer/playwright and freelance writer. For the last fifteen years, she has been a columnist for the Thunder Bay Chronicle Journal, writing about the Aboriginal experience. In her work she has found that people are not so much that different, as we all smile, cry, laugh, and feel deep loss when our loved ones hurt. Asham has been the recipient of many arts awards and has achieved critical success for much of her work. Her arts achievements followed a sensitive social work career where her specialties lay in community and organizational development while also working one-on-one with victim healing issues.

Marie Annharte Baker was born in 1942 in Winnipeg where she is working on a manuscript which explores Indigena silence. She believes that life story and contemporary storytelling are ways of making metissage out of fragmentary identities. Her poetry collections include Being on the Moon (1990), Coyote Columbus Cafe (2004), and Exercises in Lip Pointing (2003). She is a member of dawn Winnipeg and a grandmother of three. Her son is Forrest Funmaker, educator and writer.

The Association for Community Living-Manitoba is an advocacy group dedicated to the full inclusion in the community of persons of all ages who live with an intellectual disability.

Maria Barile has more than thirty years experience as a community worker with women with disabilities. She is one of the original group of seventeen women who started the DisAbled Women's Network (dawn) Canada, and one of the founders of Action des femmes handicapées (Montréal). Having published in the area of disability, feminism, and technology, Maria offers workshops and lectures on issues of ableism/disableism. In the past twenty years, she has presented to various commissions on the use of depo provera, violence, and other issues that affect women with disabilities and advocated to improve access to the health care system and women's shelters (for women with disabilities). She works as a consultant in her company Eco Access and is co-director of the Adaptech Research Network based at Dawson College.

Josée Boulanger is a community filmmaker and graduate student in Disability Studies at the University of Manitoba. She uses collaborative video storytelling as a way for people who have been labelled with an intellectual disability to share their knowledge, express themselves, and teach others from lived experiences.

Bonnie Brayton is the National Executive Director of the DisAbled Women's Network of Canada (dawn-rafh). dawn Canada has been focused on advancing the rights of women with disabilities for twenty-five years in Canada and internationally. She is also the President of Coup de Balai-Clean Sweepers, a social economy organization in her community. Bonnie also serves on the Boards of the Canadian Centre for Disability Studies and La Maison Parent-Roback (a Quebec feminist collective) in Montreal. Bonnie lives in Montreal with her partner, Delmar, and their two daughters, Leah and Virginia, their two cats, Bowser and Felix, and Tsoukie the wonder poodle. Originally from a small town in Northern Québec, Bonnie Brayton's career spans more than 30 years in the private and public sector.

Carrie R. Cardwell is an artist and an Expressive Arts therapist (since 1985). Currently she enjoys working with Deaf, hard-of-hearing, and hearing individuals, couples and families in her private practice in the west end ofToronto; as well she works part time in a community-based Deaf and hard-of-hearing children's mental health program in Milton. She lives with her two teenage sons. For more information, see her website.

Charlotte Caron is currently Acting Principal of the Centre for Christian Studies in Winnipeg. She has written several articles on living with chronic illness including "Water Wearing on a Stone: The Role of Shame in the Social Construction of Chronic Illness" in Dissonant Disabilities: Women with Chronic Illnesses Explore Their Lives (2008). She and Gail Christy worked together in the Barbwire Collective to write Not All Violins: Spiritual Resources for Women with Disabilities and Chronic Illnesses (1997).

Gail Christy, whose mobility impairment is the result of Cerebral Palsy, is a recently retired member of the Order of Ministry of The United Church of Canada where for twenty-seven years she served pastorates in Saskatchewan and eastern Ontario. She has written for children about living with disability and now tries to educate her grandsons about these challenges. She thoroughly understands living on the edge and despite retirement continues to do so as she ministers as United Church chaplain at Elisabeth Bruyere Hospital, does consulting for Bereaved Families of Ontario-Ottawa Region, and acts as Spiritual Director.

Community Living-Winnipeg is an organization that focuses on enhancing the lives and status of people living with an intellectual disability by promoting full inclusion and participation in the community. The Women's Group, comprised of women with intellectual disabilities and non-disabled women, came together to develop a process of self-exploration that came to be called "Walking a Woman's Path."

Doreen Demas has been active in the disability consumer movement and the First Nations community for many years. More recently, she has been involved in the First Nations disability self-help movement, at an international, national and regional level. She is currently Executive Director of the First Nations disability Association of Manitoba Inc. Her personal experience as a Dakota woman with a visual impairment has helped shape her skills and abilities as an activist, researcher, and policy analyst in both the First Nation and disability communities.

Julie Devaney is a health activist who advocates for patient and disability rights through her writing, performances, and workshop facilitation. Her memoir, My Leaky Body, was published by Goose Lane Editions in 2012. She has a Master's Degree in Critical Disability Studies from York University in Toronto. Find her online at: http://www.myleakybody.com/book/

Prior to her death in August 2004, Tanis Doe was a respected Fulbright scholar, mother, gay rights activist and Canadian who identified as having Aboriginal ancestry. As an academic and activist Tanis's work in Canada and in the United States was situated in some of the historic centres that were part of the revolution and evolution of the Canadian and American Disability Rights Movement. Her accomplishments included work with the DisAbled Women's Network, Council for Canadians with Disabilities (formally known as the Coalition of Provincial Organizations of the Handicapped), University of California: Berkeley, Gallaudet University, the World Institute on Disability and the Ryerson University, School of Disability Studies. Working from her own lived experience, personal and political, Tanis contributed to the development of disability studies programs, challenged barriers to post-secondary education, worked to draw attention to the issues of violence against women with disabilities, and communicated her perspective of motherhood and parenting from the lens of a person who identified with multiple racialized communities.

Anjali Dookeran was a gifted visual artist, whose forte was watercolour painting. She had a Bachelor of Fine Arts and a Master's of Library Science. Her work was shown in solo and group exhibitions in Winnipeg. Recently, her painting from the Red Series graced the cover of Dissonant Disabilities: Women with Chronic Illnesses Explore Their Lives (2008). Anjali had chronic illness. She passed away in 2007.

Kelly-Jo Dorvault is a multi-media artist who uses her personal experiences as a reference point for her art and as a tool for creating dialogue. Combining different techniques, materials and processes is one way she uses to explore how everything is connected and to deal with the crossovers between reality and fantasy.

Diane Driedger has written extensively about the issues of women and people with disabilities over the past thirty years. Her book The Last Civil Rights Movement: Disabled Peoples' International was published in 1989. She has co-edited two international anthologies by disabled women and, most recently, co-edited with Michelle Owen, Dissonant Disabilities: Women with Chronic Illnesses Explore Their Lives (2008). Diane is an educator, administrator, activist, and researcher in the area of disabled women's issues in Canada and internationally. She is also a visual artist and poet, and holds a Ph.D. in Education. She lives in Winnipeg.

Jane Field, a former high school teacher and literacy worker, is a writer and singer-songwriter, a speaker and performer in the Toronto area. She was a wheelchair user for fifteen years, quadriplegic for six of those years, before she met a doctor in 2002 who told her she had a treatable nerve disease. Since undergoing extensive treatment, she no longer requires a wheelchair, but continues to straddle the boundaries of identity and belonging in the disabled and non-disabled communities. Her lesbian identity remains unchanged.

Cheryl Gibson worked as a psychologist for the Ontario Ministry of Education until she was labelled permanently disabled after a "failed back operation" in 1989. She continues to work in her profession by giving workshops on journalism and running a small private practice from her home. She has two children and two grandchildren and lives in a small community in Eastern Ontario where she has learned what the term "community" really means.

Nancy E. Hansen, Associate Professor, is Director of the Inter-disciplinary Master's Program in Disability Studies at the University of Manitoba. Nancy is researching in the areas of literacy, culture history, health care, ethics, and human geography as they relate to disability issues in daily life.

Kyla Harris grew up in Canada with a family history of artists. Her work and life took a dramatic turn when she had a diving accident in 2000. Since then she has been interested in the viewpoints of minorities. She now predominantly paints figurative work in oils at her studio in East London.

Laura Hockman, bsw, rsw, ma, is the Executive Director of Independent Living Vernon. Her nickname is Betty Rubble because of her giggle, and she has four dogs (Gabbi, Armegeddon, Nightmare, and Kilo) who help her keep her sense of humour.

Esther Ignagni is an Assistant Professor in the School of Disability Studies at Ryerson University. A former community health worker, she was an organizer and advocate in the anti-violence and hiv/aids action movements during the late 1980s and 1990s. As someone with lived and work experience in the area of disability, her academic work involves the use of sociological theories to explore citizenship as a determinant of disabled people's health. She is also involved in several projects exploring the use of new media in constructing new knowledges of disability and in constructing new ways for disabled people to transform their personal and collective realities.

Pat Israel is proud to be a disabled feminist. She lives in Toronto in a barrier free house with her partner of many years, John, and her dear mom, Helen. Emma the wonder dog, along with Sarah and Phebe, the cats extraordinaire, also race around in this house.

Sally A. Kimpson is a disabled nurse, disability activist, and scholar with direct experience of living on income support, and a deep interest in how public policy constructs the lives of disabled women with disabilities in ways that create barriers to social and economic equality. She is currently completing her Interdisciplinary Ph.D. (Nursing and Education) at the University of Victoria. With its focus on the socio-economic well-being of disabled women, in particular how they live with the policies and practices to which they are subject, Sally's dissertation makes links between poverty, health and social justice in disabled women's lives.

Sarah Murray is a portrait and documentary photographer, who lives in Vancouver, b.c. At the age of twenty, she began her studies in manual photography at Focal Point. By 1996, Sarah was shooting professionally. She is constantly exploring her fascination with the human condition through her camera lens. Sarah has balanced her love of portraiture and travel through her photography, and a career that allows her to be a global citizen with an eye on the world.

Lynda Nancoo is currently working in the financial industry as a technical analyst. She spends her spare time encouraging young girls to write about their life experiences especially if they have been touched by disability.

Renee Norman is an award-winning poet, writer, and teacher. Her most recent collection of poetry, Martha in the Mirror, was published by Inanna Publications in the spring of 2010. Her first volume of poetry, True Confessions, was awarded the prestigious Helen and Stan Vine Canadian Jewish Book Award for Poetry in 2006. Her second volume of poetry, Backhand Through the Mother, was published in 2007. Renee's doctoral dissertation, House of Mirrors: Performing Autobiograph(icall)y in Language/Education, received the Canadian Association for Curriculum Studies Distinguished Dissertation Award and was published in 2001. She lives in Coquitlam, British Columbia.

Tracy Odell lives with her husband, David, in Scarborough, Ontario. Married for twenty-three years, they are now grandparents, thanks to her daughter, Katie, who was mentioned in this article. Their younger daughter is studying classics in her third year of university. Tracy is currently employed by the province of Ontario as their Director for Accessibility Program Design and Delivery. Despite all predictions to the contrary, Tracy and her many relationships are still alive and well.

Fran Odette is a disabled, queer, feminist activist who has been actively working in the area of equality rights for persons with disabilities for more than eighteen years. Fran works with the women's community around issues of access to services for women with disabilities, particularly with regards to services for survivors of violence. Trainer/educator, researcher and writer, much of Fran's work has been supporting service providers in the violence against women sector as well as social service agencies to make the linkages needed to ensure that all women have access to services.

Michelle Owen is an Associate Professor in the Sociology Department at the University of Winnipeg and Acting Coordinator of the new Disability Studies Program. Current projects include an investigation of how Canadian academics with multiple sclerosis negotiate the workplace. She co-edited, with Diane Driedger, Dissonant Disabilities: Women with Chronic Illnesses Explore Their Lives (2008).

Alexandra Pasian is a poet, freelance writer, and professor of composition and professional writing living with her family in Montreal.

Wendy Porch has a M. Ed. from the Ontario Institute for Studies in Education/University of Toronto. Most recently, she was a Research Fellow at The Open University uk where she was engaged in European research projects aimed at ensuring access for people with disabilities to Lifelong Learning. She was a facilitator in the Building Bridges Project in 2003 and 2004.

Dianne Pothier of the Schulich School of Law at Dalhousie University has been a member of the law faculty since 1986 (Full Professor since 2001). Teaching and research subjects include: constitutional, conflicts, public, labour, human rights, equality, and disability. Previous employment includes being legal counsel to the Canada Labour Relations Board (1984-1986) and a Supreme Court of Canada law clerk to Justice Brian Dickson (1983). Litigation experience includes being the appellant's co-counsel in the Supreme Court of Canada in r.d.s. v. The Queen, [1997] 3 s.c.r. 484, and being counsel for the joint intervention of leaf and dawn in British Columbia v. Auton, [2004] 3 s.c.r. 657. Awards include the University Medal in Law (Dalhousie Law School, 1982) and the Frances Fish Women Lawyers' Achievement Award from the Nova Scotia Association of Women and the Law (2005). Publications include being the co-editor, along with Richard Devlin, of Critical Disability Theory: Essays in Philosophy, Politics, Policy and Law (2006).

Carla Rice is Associate Professor in Women's Studies at Trent University in Peterborough, Ontario, where she lectures in culture, health, and psychology. A leader in the field of body image and difference within Canada, she is a founding member or former director of innovative initiatives such as the National Eating Disorder Information Centre, the Body Image Project at Women's College Hospital in Toronto, and Envisioning New Meanings of Disability and Difference, an Ontario-wide arts-based partnership project with the ywca. Her research explores representations and life history narratives of body and identity.

Sharon Dale Stone is Professor of Sociology at Lakehead University. Her current research and teaching focus on critical disability studies, social gerontology, and qualitative research methods. She has also taught and maintains a keen interest in feminist studies, queer studies, and critical media studies. She recently published the book, A Change of Plans: Women's Stories of Hemorrhagic Stroke (2007) which was based on sshrc-funded research, and she is working on producing another book-length manuscript based on that research. She is also a co-investigator on a project examining the workplace experiences of academics with multiple sclerosis, and on another project examining the consequences of workplace injury.

Milana Todoroff continues her traveling adventures. Since her trip to Europe, she has been to China and Tibet and has recently returned from a trip to Turkey.

Susan Wendell is Professor Emerita of Women's Studies at Simon Fraser University. She wrote The Rejected Body: Feminist Philosophical Reflections on Disability (1996) and several articles on disability and illness. She is currently working on a book about ethics and the value of suffering. She has lived with me/cfids since 1985.

Joanna M. Weston has had poetry, reviews, and short stories published in anthologies and journals for some twenty-five years. Her publications include, among others, a middle-reader, Those Blue Shoes, and a volume of poetry, A Summer Father.

Susie Wieszmann is a member of People First Winnipeg. Her love of singing brings people together in the spirit of fun. Susie has a great sense of humour and is always quick with a joke. She wants all people to enjoy the freedoms she does living in the community.

Winsom: As a person of many cultural heritages—with African, Maroon, Arawak, Spanish, and Scottish ancestries—I bring to my work a spirituality which manifests itself through a syncretism of African-based religion and deeply personal experiences. "I evoke the powers of ancient alchemy, for love, from my hands and heart, my mind, my body, my spirit. I transform these elements into the power of love."

Valerie Wolbert is President of People First Manitoba. She is unstoppable in her committment to making life better for all people who have been labelled with an intellectual disability. Valerie gives of her energy, time and skills to many organisations in the Winnipeg area.

Hilde Zitzelsberger is a Ph.D. candidate in the Lawrence S. Bloomberg Faculty of Nursing and alumni of the cihr Ph.D. training program Heath Care, Technology and Place at the University of Toronto. She also is a lecturer at the University of Ontario Institute of Technology where she teaches in Health Sciences. Her interests include children's and adult's embodiments, gender issues, and health care technologies and places.

"I heard the voices of my sisters—some new, some old, all engaging—as I read living the edges: a disabled women's reader It reignited my passion for our stories. What a gift! Diane Driedger has worked magic. This book is a must read for anyone searching for a deeper understanding of all women's issues. "
—Pat Danforth, Founding Member, DisAbled Women's Network (DAWN) Canada

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Herizons, Fall 2012
Reviewed by Connie Jeske Crane

"This is not an easy book to read. Throughout this "vehicle for women with disabilities to share experiences" you hit bald and un- comfortable truths—women with disabilities face disproportionate rates of violence, sexual abuse, poverty and unfair treatment at work and in medical settings.

A memorable contributor, Aboriginal writer Joy Asham, relates nurses' "terrible rudeness" to her after she had a nasty scooter spill on an icy road in Thunder Bay, Ontario. "I never received care when I was in hospital, couldn't even get a nurse to tighten my sling. My doctor would come every day, but that was for five minutes. The rest of the time ... I was subjected to such terrible rudeness that all I could think of was going home and hiding, pain, sickness or not." Asham says one nurse told her, "Comb your hair right now!! If it isn't combed by the time I get back, I will take my scissors and cut it all off!"

This volume, which editor Diane Driedger says is the first Canadian work of its kind, reveals common themes (being outside the norm, countless challenges and barriers) and the experience of women living with a range of disabilities, including multiple sclerosis, Chrohn's disease, bipolar disorder, dyslexia, blindness and hoarding. The writers also varied in their religious affiliation, economic status, age, cultural background and profes- sion. They include women who are Christian and Muslim, gay and straight. They are gradu- ate students, writers, actors, researchers, office workers and Aboriginal senior citizens who ride red scooters called Babe.

Thanks to some great writers (Julie Devaney and Joy Asham, to name just two), the collection brims with wisdom, candour and strength. But the best thing Driedger does is highlight our responsibility towards activism. Asham writes, "It is not just the responsibility of those who are victims to work toward positive change in a culture or work environment. Nor does it rest solely on the shoulders of the perpetrator. It is the job of peers to educate their own, to bring forth the welcoming of voices from the affected masses so that they may be heard."

Acknowledgements

Introduction
Diane Driedger

I. Who We Are on the Edges

Must Disability Always Be Visible? The Meaning of Disability for Women
Sharon Dale Stone

A Longer Journey of Reflexivity: Becoming a Domesticated Academic
Laura Hockman

"Self-Portrait with Bandaged Breast (After Van Gogh's Self-Portrait with Bandaged Ear)"
Diane Driedger 

Proliferation
Diane Driedger

Medication Reaction
Diane Driedger

Radiation
Diane Driedger 

Living on the Edges
Charlotte Caron and Gail Christy 

Cry Not Crazy Lady
Marie Annharte Baker

"Post-Kelly Re: Constructed Reality"
Kelly-Jo Dorvault 

Arthritic Dreams ii
Renee Norman

Feminism, Disability and Transcendence of the Body
Susan Wendell

"Untitled Painting"
Anjali Dookeran

Black Thread Around
Marie Annharte Baker

II. Naming the Edges: Barriers

Margins Are Not For Cowards
Cheryl Gibson

"Me, Myself and I"
Winsom 

Triple Jeopardy: Native Women with Disabilities
Doreen Demas 

Coming Out of Two Closets
Jane Field

Performing My Leaky Body
Julie Devaney 

To Be Or Not to Be? Whose Question Is It, Anyway? Two Women with Disabilities Discuss the Right to Assisted Suicide
Tanis Doe and Barbara Ladouceur 

A Delicate Balance: Chronic Conditions and Workspace
Nancy E. Hansen 

Living Poorly: Disabled Women on Income Support
Sally A. Kimpson

Disability Diss Away
Marie Annharte Baker 

The Geography of Oppression
Joy Asham

III. Violence on the Edges

An Intersectional Perspective on Violence: A New Response
Maria Barile

undr the dislexic tree
Alexandra Pasian

"Have You Experienced Violence or Abuse?": Talking with Girls and Young Women with Disabilities
Michelle Owen

When Bad Things Happen: Violence, Abuse, Neglect and Other Mistreatments Against Manitoba Women with Intellectual Disabilities
The Association for Community Living-Manitoba

"Untitled Woodcut"
Anjali Dookeran

Lions
Joanna M. Weston 

IV. With Us on the Edges: Relationships and Sexuality

New Reproductive Technology: My Personal and Political Dichotomy
Maria Barile 

Deaf-Mute?
Jancis M. Andrews

Disability and Relationships
Tracy Odell

Marriage-able? Cultural Perspectives of Women with Disabilities of South Asian Origin
Lynda Nancoo

"The Critical Woman and the Space Cadet"
Carrie R. Cardwell

"You think I want to make fuck with you": Travelling with a Disability or Two
Milana Todoroff 

Access-Sex Series
Kyla Harris and Sarah Murray

V. Challenging the Edges

When the Body Protests: New Forms of Activism
Diane Driedger

Creating Community Across Disability and Difference
Carla Rice, Hilde Zitzelsberger, Wendy Porch and Esther Ignagni 

Walking a Woman's Path: Women with Intellectual Disabilities
The Women's Group, Community Living-Winnipeg

The First Step Is To Be Noticed
Dianne Pothier

Art, Sticks and Politics
Nancy E. Hansen and Diane Driedger 

"Untitled Drawing"
Anjali Dookeran 

The Freedom Tour Documentary: An Experiment in Inclusive Filmaking
Josée Boulanger, Susie Wieszmann and Valerie Wolbert

The Disabled Women's Movement: From Where Have We Come?
Pat Israel and Fran Odette 

Leadership, Partnership and Networking: A Way Forward for the DisAbled Women's Network of Canada
Bonnie Brayton 

Contributor Notes

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