PERSONAL EXPERIENCES AND STORIES OF WOMEN WITH DISABILITIES
Personal experiences and stories of women with disabilities is an area where a great deal of literature exists and continues to expand. A substantial part of the literature has been written by women with disabilities themselves, most documenting their experiences of being female and having a disability. In addition to women's own personal accounts this section includes items examining the autobiographies of people with disabilities from a gender perspective, stories of women with disabilities who are important historically, scholarly research on perspectives and experiences related to gender, literature and poetry written from a disability and gender perspective, and increasingly, internet-based and multimedia sources of women's experiences. This section also includes writing written by others about the lives of women and girls with disabilities, some of these writings are by friends or lovers of these women, others by researchers, and some by mothers. This section is by no means a comprehensive overview of women's stories and perspectives, but should provide a diverse list of what is available.
Addis, P. K. (1983). Through a woman's I: An annotated bibliography of American women's autobiographical writings, 1946-1976.
Metuchen, NJ: Scarecrow Press
This annotated bibliography of autobiographical writings by American women contains a number of autobiographies by women with disabilities or chronic illness.
Armstrong, F. (1992). As far as the eye can sing: The autobiography of Frankie Armstrong.
London: The Women’s Press, Ltd.
The book begins as Frankie is preparing in 1990 for yet another eye surgery, one to remove a cataract and potentially restore enough of her sight to allow her greater independence. She recalls her childhood and early interest in music, and matter-of-factly describes her gradual loss of clear sight in her late teens. In the book, she often discusses how her loss of vision affected her personality, her work, and her music, and how over the course of years, she came to an acceptance of and adjustment to her disability. It is interesting that it took some bit of research to even realize that her disability existed, where within her autobiography she addresses her condition repeatedly. However, she includes a song she wrote on the subject, with the lines, "The touch of your hand, the feel of your face, my fingers can see. Providing the warmth and the contact that bring you to me, for you just accept me, don't try to protect me, with you I can look to the future and fight for myself." Her attitude is evidently that it's a personal issue and not necessarily relevant to her music or her work. As the book closes, she is readjusting to having more vision than she'd had in the last twenty years, adjusting to marriage with Darien Pritchard and looking forward to continuing her synthesis of music performance, teaching, and empowerment.
Asch, A., & Sacks, L. H. (1983). Lives without, lives within: Autobiographies of blind women and men. Journal of Visual Impairment and Blindness, 77
This article examines the autobiographies of 25 people; 15 women and 10 men, who all are blind or visually impaired. The article is written from a gender perspective and explores whether blindness or visual impairment influences the lives of women and men differently. The article describes the ideal roles women and men are expected to play and discusses how the authors of the autobiographies fill these roles. They examine the impact of gender, as well as the impact of blindness in the lives of these people and compare their accounts of their lives to autobiographies of non-disabled women and men.
Atkinson, D., McCarthy, M., Walmsley, J., Cooper, M., Rolph, S., Barette, P., Coventry, M., & Ferris, G. (Eds). (1999). Good times, bad times: Women with learning difficulties telling their stories.
Worcestershire: British Institute of Learning Disabilities (BILD).
In this book, women with a learning disability give voice to their thoughts and feelings on a range of topics, which matter to them. The chapters cover subjects ranging from work, to relationships and the politics of learning disability. The book offers a unique insight into what it means to be a woman with a learning disability in Europe today. It also provides a detailed account of the process by which women with and without a learning disability worked to support each other to make their voices heard. It is essential reading for anyone involved in service provision and a landmark contribution to feminist writing.
Atkinson, D., & Williams, F. (Eds.). (1990). Know me as I am.
London: Hodder and Stoughton.
This book is an anthology of poetry, art, and prose by people with learning difficulties. The editors have collected "life stories" from numerous people in such topics as memories, relationships, daily life, a sense of self, struggle and self-determination, oppression, creativity, imagination and fantasy, and transitions. The book concludes with three life stories and an exploration of the key themes of identity, personal struggle, and relationships. The editors also include implications for research and a discussion of their roles as editors.
Barker, K. K. (2005). The fibromyalgia story: Medical authority and women's worlds of pain.
Philadelphia: Temple University Press.
More than six million Americans—most of them women—have been diagnosed with fibromyalgia syndrome (FMS), a disorder that produces musculo-skeletal pain and fatigue. In the absence of visible evidence, a well-understood cause, or effective treatment, many have questioned whether FMS is a "real" illness. Amidst the controversy, millions of women live with their very real symptoms. Rather than taking sides in the heated debate, Kristin Barker explains how FMS represents an awkward union between the practices of modern medicine and the complexity of women's pain. Using interviews with sufferers, Barker focuses on how the idea of FMS gives meaning and order to women beset by troubling symptoms, self-doubt, and public skepticism. This book offers a fresh look at a controversial diagnosis; Barker avoids overly simplistic explanations and empathizes with sufferers without losing sight of the social construction of disease and its relation to modern medical practice. An excerpt can be found online at: http://www.temple.edu/tempress/chapters_1400/1685_ch1.pdf
Beery, T., Sommers, M. S., & Hall, J. (2002). Focused life stories of women with cardiac pacemakers. Western Journal of Nursing Research, 24
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.
Bettis, P., & Adams, N. (Eds.). (2005). Geographies of girlhood: Identity in-between.
New York: Lawrence Erlbaum. Geographies of Girlhood: Identities In-Between
explores how diverse adolescent girls come to understand themselves as female in this culture, particularly during a time when they are learning what it means to be a woman and their identities are in-between that of child and adult, girl and woman. It illuminates the material everyday realities of adolescent girls and the real issues that concern them, rather than what adult researchers think is important to adolescent girls. The contributing authors take seriously what girls have to say about themselves and the places and discursive spaces that they inhabit daily. Rather than focusing on girls in the classroom, the book explores adolescent female identity in a myriad of kid-defined spaces both in-between the formal design of schooling, as well as outside its purview--from bedrooms to school hallways to the Internet to discourses of cheerleading, race, sexuality, and ablebodiness (Erevelles & Mutua: “I am a woman now!”: Rewriting the cartographies of Girlhood from the standpoint of Disability Studies). These are the geographies of girlhood, the important sites of identity construction for girls and young women. This book is situated within the fledgling field of Girls Studies. All chapters are based on field research with adolescent girls and young women; hence, the voices of girls themselves are primary in every chapter. All of the authors in the text use the notion of liminality to theorize the in-between spaces and places of schools that are central to how adolescent girls construct a sense of self. The focus of the book on the fluidity of femininity highlights the importance of race, class, sexual orientation, and other salient features of personal identity in discussions of how different girls construct gendered identities in different ways. Geographies of Girlhood: Identities In-Between
challenges scholars, professionals, and students concerned with gender issues to take seriously the everyday concerns of adolescent girls. It is recommended as a text for education, sociology, and women's studies courses that address these issues.
Beyondmedia Education. (n.d.). Beyond disability: The Fe Fe stories
[Video]. Chicago: Author.
The Empowered Fe Fes (slang for female), a group of young women with disabilities, hit the streets of Chicago on a quest to discover the difference between how they see themselves and how others see them. Their revelations are humorous, thought provoking and surprising. As the young women grapple with issues as diverse as access, education, employment, sexuality and growing up with disabilities, they address their audience with a sense of urgency, as if to say, "I need to tell you so you'll see me differently." An extensive news story on this video & the Fe Fes project can be found at http://www.communityarts.net/readingroom/archive/65roche.php
, and to order this video, go to: http://www.beyondmedia.org/catalogue.html
Birch, J. (2003, February). Congratulations! It's Asperger syndrome.
London: Jessica Kingsley.
Diagnosed with Asperger syndrome in adulthood, Jen Birch relates her story with humor and honesty, taking us through the years of frustration and confusion that led to her diagnosis in 1999. She candidly describes her continual search for 'normality,' her experiences at work, her difficulties with relationships, her time spent in a psychiatric hospital and her struggle for correct diagnosis. Talking positively about how her life has changed since her diagnosis, Jen aims to use this newfound knowledge to inform others about the syndrome and how, once its pros and cons are understood, life can be lived to the full.
Blackman, L. (1999). Lucy’s story: Autism and other adventures.
Mt. Ommaney, Australia: Book in Hand.
In her autobiography, Lucy Blackman gives a very detailed insider’s view of autism before and after she learned to communicate through typing. Blackman adeptly discusses the social construction of speech and how her lack of a method of communication allowed the process of the experience of receiving and speaking to pass her by in her early years. In her later years, she developed a friendship with an Australian writer who became her mentor in her burgeoning desire to be a writer. This book, as well as being a fascinating autobiographical narrative, is essential reading on the aspects of sensory discrimination, issues of visual perception, and discussion of the rituals associated with autism. Blackman also provides an in depth discussion of her school placements, what worked, what did not work in her school settings, and how her family relationships bridged both her school and communication gaps. A majority of the book provides a comprehensive discussion of the method of facilitated communication (FC). Blackman goes into meticulous detail as to how she came to learn FC and she takes text from when she first acquired the method and analyzes it to show the process of communication. In this discussion she provides her own explanation for message passing errors (language keys, personal communication perceptions, vision issues), and discusses how she used the method in high school—what types of classroom situations and student-teacher/home communication methods were successful and not. Blackman also gives the reader an honest and sometimes humorous account of her relationship with her mother and sisters.
Bogdan, R., & Taylor, S. J. (1994). The social meaning of mental retardation: Two life stories.
New York: Teachers College Press.
This book presents the life histories of two people, a woman and a man, who both have been labeled mentally retarded, and who are both former inmates of institutions for people with mental retardation. This is one of the few books that presents the life and experiences of a woman with mental retardation in her own words. Originally published in 1982, this updated edition includes a postscript discussing changes in the field of mental retardation and in our society since the original printing.
This is an unusual book in the field of mental retardation for at least two reasons. First, it presents the lives and experiences of people labeled mentally retarded as they themselves view and understand them. People labeled mentally retarded have traditionally not been treated as legitimate informants or seen as having important insights to offer about their own situation. Second, instead of talking about the reality of the concept of mental retardation the authors ask: Is mental retardation real? What is mental retardation? What does mental retardation mean in our society? Although the authors do not use a gender perspective in their analysis of the lives of people with disabilities this book gives an important insight into the life of a woman with mental retardation.
Bolander, A. M., & Renning, A. N. (1995). I was #87: A deaf woman's ordeal of misdiagnosing, institutionalization, and abuse.
Washington, DC: Gallaudet University Press.
“I was six years old, alone, and terrified, and no one knew that I was deaf." So began Bolander's five-year ordeal at an institution for retarded and unwanted children where she was known by a number instead of her name. Her stunning story will inspire all who have endured any kind of hardship while trying to reclaim their lives.
Bolnick, J. P. (1985). Winnie–“My life in the institution”: A memoir of a special woman.
New York: St. Martin’s Press.
This is the life story of Winnie Sprockett, who was admitted to a state institution for people with mental retardation at the age of six. Winnie's story is written by her friend, journalist Jamie Pastor Bolnick. The story is based on Winnie's autobiography which she wrote to prove to her brother-in-law and the world that she was not retarded and she desperately wanted her autobiography to be published. Jamie decided to help Winnie tell her story and Winnie's short written account of her life is supplemented by hundreds of hours of interviews the author conducted with Winnie. Winnie's story is told with her own words and gives us a rare insight into the life inside institutions as it is experienced by the people who live there. An excerpt explainging why Winnie wrote her story can be read at Jamie Pastor Bolnick’s web site: http://jamiepastor.com/work2.htm
Boswell, M. (2001, Fall). Sexism, ageism, and "disability": (Re)constructing agency through (re)writing personal narrative. Women and Language, 24
This paper examines paradoxes involved in living with "disability," arguing that such paradoxes arise from a complex interaction among a set of habitually expressed oppressions. It also discusses how feminisms, ostensibly devoted to dismantling these isms, sometimes perpetuates dominant discourses instead. The paradoxes discussed are "disability" as both deficit and girt, and feminisms as both perpetuators and liberators. In addition, I show how hearing "disabilities" often have as much to do with loss 9f voice as they do with loss of hearing, and conclude with a plea to develop a new social construct of differently abled.
Bowers, T. (1999). Alandra's lilacs: The story of a mother and her deaf daughter.
Washington, DC: Gallaudet University Press.
When, in 1968, nineteen-year-old Tressa Bowers took her baby daughter to an expert on deaf children, he pronounced that Alandra was “stone deaf,” she most likely would never be able to talk, and she probably would not get much of an education because of her communication limitations. Tressa refused to accept this stark assessment of Alandra’s prospects. Instead, she began the arduous process of starting her daughter’s education.
Economic need forced Tressa to move several times, and as a result, she and Alandra experienced a variety of learning environments: a pure oralist approach, which discouraged signing; Total Communication, in which the teachers spoke and signed simultaneously; a residential school for deaf children, where Signed English was employed; and a mainstream public school that relied upon interpreters. Changes at home added more challenges, from Tressa’s divorce to her remarriage, her long work hours, and the ongoing challenge of complete communication within their family. Through it all, Tressa and Alandra never lost sight of their love for each other, and their affection rippled through the entire family. Today, Tressa can triumphantly point to her confident, educated daughter and also speak with pride of her wonderful relationship with her deaf grandchildren. Alandra’s Lilacs is a marvelous story about the resiliency and achievements of determined, loving people no matter what their circumstances might be.
Breindel, T. J. (2000). Know that: Quotes from deaf women for a positive life.
San Diego, CA: Dawn Sign Press.
This treasury of quotes from deaf women about life, love, and overcoming multifaceted challenges provides a resource for those seeking inspiration and understanding. Compiled from contributions from women of all walks of life--young and old, single and married, straight and lesbian, soccer moms and single mothers, women of color--this collection recognizes the gender-specific barriers that women confront daily and offers gender-specific strengths for overcoming them. Also a beginning point of unity for deaf women everywhere, these bits of wisdom address the need to pull together, share the vision and resources needed for empowerment, embrace diversity, and contribute to life.
Browne, S. E., Connors, D., & Stern, N. (Eds.). (1990). With the power of each breath: A disabled women's anthology
[Reprint ed.]. San Francisco: Cleis Press.
The quality of writing of this collection of essays, poetry, interviews, and first-person accounts is uneven and the editors' articulate and informative introductions sometimes outshine the collected pieces. All the women who contribute to the book have a disability. Most of the book consists of first person accounts of being a female and having a disability, but a few conceptual pieces are also included. The stated purpose of the book is to "...bridge the gap that separates women with disabilities from one another and from the non-disabled world" (p. 10) and the book reflects these women's resistance against the silencing of women with disabilities. The editors set out with a strong political commitment to produce an anthology representative of all women with disabilities. Although that proved to be impossible the book addresses a broad spectrum of disability issues and the contributors cross the lines of race, age, class, sexual orientation, geographical location, and type of disabilities. The book also includes interviews with women who are labeled mentally retarded, a group which often has been excluded in the literature on women with disabilities. This book is born out of a group of women with disabilities who also are feminists and reflects their experiences of discrimination because of their disabilities in addition to the traditional sexism. The majority of the pieces in this book are angry and speak out with bitterness of the isolation, despair, and powerlessness women with disabilities face in their lives. Some of the pieces are both inspiring and very moving.
Burgan, M. (1994). Illness, gender and writing: The case of Katherine Mansfield.
Baltimore: Johns Hopkins University Press.
Katherine Mansfield wrote the most significant body of her work during the last eight years of her life when she was fighting a losing battle with tuberculosis. Simply to state this fact is to raise a number of provocative questions about the relationship of prolonged physical illness to creative work.
Burnell, J. (2001). From life-threatening illness to a more sensitive therapist: One woman’s journey. In E. Kaschack (Ed.), Minding the Body: Psychotherapy in Cases of Chronic and Life-Threatening Illness [Feature issue]. Women & Therapy, 23
This article describes the author’s connection between a life-threatening illness and the personal and professional transformation she underwent. In particular, it discusses the impact on sense of self, the value of collaboration, the use of self-disclosure, and the importance of systemic sensitivity in the therapeutic process.
Cahn, S. K. (2003, Spring). Come out, come out whatever you've got! Or, still crazy after all these years. Feminist Studies, 29
A personal essay about the experience of chronic illness, in this case Chronic Fatigue Syndrome/Fibromyalgia. The author recounts some of her frustrations dealing with the "medical model" of illness, medical practitioners, and presumptuous academics. In the process she explores issues of invisibility, "closeting," identity and mental health/illness, subjects she first encountered as a lesbian and, more recently, as the biological host of an enigmatic "syndrome." In the end, each experience informs her knowledge of the other, opening the way to a more critical analysis of how we, as a society, live our lives, our loves, and our illnesses.
Campling, J. (Ed.). (1981). Images of ourselves: Women with disabilities talking.
London: Routledge & Kegan Paul.
This is an anthology of 23 women writing short personal pieces about their lives. All the contributors have disabilities and span the years from adolescence to old age. The editor claims they come from a wide variety of backgrounds and from all over the country (Britain). But in fact most of the women seem to be from white middle class background and have higher than average education. The editor does not account for the women's racial background. All the women have physical disabilities. It is notable that many of the women were not born with a disability but acquired the disability later in life.
The editor introduces each contributor with a brief summary of the writer's background, age, and disability. The women write about their personal feelings and how they cope with their disabilities, emotionally and economically. They also reflect on how their roles in society and relationships with other people are affected by the disability.
This book is now archived online at: http://www.leeds.ac.uk/disability-studies/archiveuk/titles.html
; the book is divided up into eight separate PDF documents.
Carroll, C., & Fischer, C. H. (2001). Orchid of the Bayou: A deaf woman faces blindness.
Washington, DC: Gallaudet University Press.
Fischer, who suffers from Usher syndrome, which causes deafness at birth and deteriorating tunnel vision, grew up in the Louisiana bayou with hearing siblings and parents who initially thought that she was mentally retarded. Here she presents a vivid portrait of the Cajun culture, in which her childhood memories are supplemented by research she conducted, and an even more arresting description of the Louisiana School for the Deaf, a residential institution she began attending in 1953 at the age of six. It was here that Fischer learned to communicate by sign ("naturally, the way hearing kids pick up speech") and become a part of the deaf culture. She firmly believes that deaf children benefit from residential schools and, more importantly, need contact with other deaf children to thrive. This memoir, which Fischer signed to Carroll (Movers and Shakers: Deaf People Who Changed the World), describes how her education offered her a link to everything beyond herself: "I learned not only how to read and write, but also what it meant to be an adult, and educated, and a citizen in the United States and the world." Despite the loss of her mother to lung cancer and her father's alcoholism, the teenage Fischer was determined to attend Gallaudet, a university for the deaf in Washington, D.C., where she obtained a college degree and met her husband, Lance, who is also deaf. Now, at middle age, Fischer, with her husband's support, maintains a courageous attitude in dealing with increasing vision loss that will probably result in total blindness. Her recollections those of a resolute and complex woman will certainly appeal to deaf readers, especially those with Usher syndrome.
Clift, E. (Ed.). Women's encounters with the mental health establishment: Escaping the yellow wallpaper.
Binghamton, NY: Haworth Press.
This unique contemporary anthology of women’s experiential writing shares women’s realities, perceptions, and experiences (positive and negative) within the therapeutic environment. These artistic expressions of personal experience will help women understand their own encounters in a new light. They are also instructive and enlightening for any practitioner working with women in a mental health setting.
Charlotte Perkins Gilman’s famous short story (included here), The Yellow Wallpaper
, which inspired this title, has come to represent the struggle of contemporary women to be understood by the therapeutic milieu from whom they seek psychological support and psychiatric treatment. An icon of feminist writing, the 1892 story symbolizes affirmation and validation for the female experience regarding mental health and therapy. This anthology, in the spirit of Gilman’s work, gives voice to today’s women so that their own encounters with the mental health establishment can be validating and affirming to others. It will also enlighten those in the helping professions as they extend their services to women in a time of growing need and shrinking resources.
In addition to The Yellow Wallpaper
and a foreword and afterword by noted psychiatric professionals, Women’s Encouters with the Mental Health Establishment: Escaping the Yellow Wallpaper also contains works by authors including Sylvia Plath, Kate Millett, Anne Sexton, Lauren Slater, Martha Manning, Elayne Clift, and many more.
Through prose and poetry, the contributors to this volume offer a creative, artistic, and highly readable contribution to the literatures of women’s studies and psychology. Visit the author’s website at http://www.sover.net/~eclift
Corbet, B. (1999, October). Rites of passage I: A disability in full. New Mobility, 10
(73), 26-29; Cabernoch, J. (1999, October. Rites of passage II: Delivery from sexual innocence. New Mobility, 10
(73), 30-31; Price, J. (1999, October). Rites of passage III: Osteoporosis, menopause and disability. New Mobility, 10
(73), 33-37; McBryde Johnson, H. (1999, October). Rites of passage IV: A celebration for the day of the dead. New Mobility, 10
The October 1999 issue of New Mobility
features stories of four female rites of passage: a young woman artist explores and provokes altered public acceptance of her disability when she forsakes her wheelchair for the unforgiving ground; another takes a headlong dive into the internet to investigate her unexpressed sexuality, and finds a host of men just dying to instruct her; another looks at menopause and the problematic nexus of disability and osteoporosis; and lastly one more completes the cycle with a thoughtful and thoroughly undepressing meditation on death. Three of these articles can be read online: http://newmobility.com/magazine_archive.cfm?publication=october-99
Corbett, J., Jones, E., & Ralph, S. (1993). A shared presentation: Two disabled women on video. Disability, Handicap & Society, 8
In this article, the authors share their experiences about making a video in which disabled women present their lives and experiences as they wish to have them portrayed. They hope that this video will be seen as "emancipatory research" in which disabled and non-disabled women work together. Included in this article is a discussion of the representation of disability on British television, specifically focusing on negative and positive images and charities.
Crisp, R. (2002, December). Gender differences in the perceptions of psychosocial experiences reported by persons with disabilities. Australian Occupational Therapy Journal, 49
The objective of this study was to describe the subjective experience of living with disability. Intensive semistructured interviews were conducted with 35 participants who had a disability. Data were collected and analysed with grounded theory methods, and resulted in typological and thematic analyses. Four groups were identified according to their overall sense of well-being, and these groups were referred to as Battlers, Strugglers, Contenders and Optimisers. The Battlers and Strugglers reported the greatest psychosocial difficulties. The Contenders indicated that they were progressing towards achieving their vocational and social goals, and the Optimisers reported satisfaction in social and vocational activities and a high sense of well-being. Dominant gender stereotypes were evident in most of the participants' self-reports and influenced their perceptions concerning issues related to employment status and social interaction. Issues related to 13 persons with non-English speaking backgrounds were also reported.
Cudney, S. A., Butler, M. R., Weinert, C., & Sullivan, T. (2002, April). Ten rural women living with fibromyalgia tell it like it is. Holistic Nursing Practices, 16
The purpose of this qualitative study was to gain an understanding of the personal experiences of 10 rural women dealing with fibromyalgia based on the theoretical frameworks of adaptation to chronic illness and social support. The data were gathered from a nursing intervention that provided computer-based peer support and encouragement. The women described themes of pain, fatigue, depression, and sleep disturbances; expressed views on the experience of rural isolation; and shared positive philosophies of dealing with this disease. With this understanding, professionals and significant others can compassionately respond to the needs of sufferers of fibromyalgia.
Danquah, M. A. (1999). Willow weep for me: A black woman's journey through depression.
New York: One World/Ballantine.
This moving memoir of an African-American woman's lifelong fight to identify and overcome depression offers an inspirational story of healing and emergence. Wrapped within Danquah's engaging account of this universal affliction is rare and insightful testimony about what it means to be black, female, and battling depression in a society that often idealizes black women as strong, nurturing caregivers. A startlingly honest, elegantly rendered depiction of depression, Willow Weep for Me
calls out to all women who suffer in silence with a life-affirming message of recovery. Meri Danquah rises from the pages, a true survivor, departing a world of darkness and reclaiming her life.
DasGupta, S. (2003, Fall). Reading bodies, writing bodies: Self-reflection and cultural criticism in a narrative medicine curriculum. In R. Charon & M. Spiegel (Eds.), Discursive Bodies, Embodied Text [Special issue]. Literature and Medicine, 22
“This essay is based on the experience of teaching a course entitled `Reading the Body, Writing the Body: Women’s Illness Narratives.’ It was offered as part of a required humanities seminar series for second year medical students, which included courses on film, philosophy, figure drawing, and fiction writing. The course was initially envisioned as a seminar that would address the association of women with their bodies and biology by involving students in the study of women’s illness narratives. Although the syllabus had been designed with a broad audience in mind, this process of student-motivated choice was such that all of the students who selected the seminar were women. What emerged from the course was rich information about the realities of female medical trainees—including the unexpected realization that many of the students suffered from some sort of chronic illness. What has emerged in addition is a new genre of pathography: the medical student illness narrative” (p. 242).
Davidson, J. (2007, December). 'In a World of her Own': Re-presenting alienation and emotion in the lives and writings of women with autism. Gender, Place & Culture, 14
The term autism derives from the Greek autos (meaning 'self') - it connotes separation, aloneness - and descriptions of those diagnosed with autistic spectrum disorders (ASDs) frequently suggest they are very much apart from the shared, experientially common space of others. The subjects of clinical literature are very often male children, perhaps unsurprising given the recognized need for early intervention and the fact that studies suggest four times as many boys receive an ASD diagnosis as girls. This understandable bias does, however, mean that a significant minority are often overlooked. This paper focuses on the experience of those girls and women who frequently struggle to obtain recognition and support for a predominantly male disorder. Drawing particularly on autobiographical accounts - including the narratives of Temple Grandin, Dawn Prince-Hughes and Donna Williams - the paper reveals a strongly felt need to communicate and thus connect their unusual spatial and emotional experience with others in a manner not typically associated with autism. It explores the complex challenges of ASD life-worlds, focusing in particular on the prevailing and powerful sense of alienation, and the ways in which ASD women use social and spatial strategies to cope with and contest the expectations and reactions of neuro-typical others.
Davis, A. (2004). My story: A photographic essay on life with multiple sclerosis.
New York: Demos Medical Publishing.
In a series of dramatic essays and photographs by the renowned San Francisco-based photographer Amelia Davis, My Story
is an evocative description of what it is like to live with multiple sclerosis (MS), a disease that affects about 350,000 Americans and whose cause is still not entirely known. The essays and accompanying photographs in this highly engaging, beautifully illustrated book poignantly portray the lives of thirty-two men and women from the ages of seventeen to seventy and of various ethnicities, and socio-economic backgrounds who share the challenge of living with MS. Some, like Amelia, use no mobility aids, while others use canes, wheelchairs, or electric scooters. All have had to face the challenges and limitations that MS has imposed upon their lives, and each has devised unique and often creative coping strategies. Accompanying each essay are commentaries by family members and friends that express their own personal feelings and experiences of living with this disease.
Davis, C. (2001). I knew a woman: The experience of the female body.
New York: Random House.
"I cannot ignore the reality of the body, its glorious beginnings and its subtle endings," writes Cortney Davis in this intimate and startlingly original account of her work at a women's clinic. A poet and nurse-practitioner with twenty five years' experience, Davis reveals the beauty of the body's workings by unfolding the lives of four patients who struggle with its natural cycles and unexpected surprises: pregnancy and childbirth, illness and recovery, sexual dysfunction and sexual joy. An abundance of solid medical information imbues every graceful line.
Davis's eternal question to herself is: How do you help someone to not merely survive but flourish? In this compassionate and expansive book, she provides a template. I Knew a Woman will alter your perception of the humanity of medicine and the ordinary miracle of our physical selves.
Deane, R. (2005, February). Washing my life away: Surviving obsessive-compulsive disorder.
London: Jessica Kingsley.
How many of us double-check that we really have locked the door or switched off the iron? For some people, such mundane everyday worries can become life-ruining obsessions. Obsessive-Compulsive Disorder (OCD) affects one in fifty people and one of them was Ruth Deane. In this frank and personal account she shares her own experience as an OCD sufferer, from the first innocuous signs of onset to the devastating effect of the condition on her relationships with her family and friends, her self-esteem and her marriage. Ruth Deane takes the reader on a moving, honest and at times light-hearted journey, from washing her hands until they cracked and bled, to hospital admission and eventual management and recovery from OCD.
This book offers hope and support to sufferers and an insight into the disorder for family, friends, professionals and all those who want or need to understand OCD and the recovery process.
Deegan, M. J., & Brooks, N. A. (Eds.). (1985). Women and disability: The double handicap.
New Brunswick, NJ: Transaction Books.
This book is the first major collection of scholarly writing about women who have disabilities and contains 11 chapters dealing with various aspects of their lives. The major factors that unify this collection are a central focus on the double minority status of women with disabilities, the lack of information available about their lives and experiences, and the need to change the conditions that perpetuate the structural inequality women with disabilities experience.
Two of the chapters, Chapter 2, by Fine and Asch, "Disabled Women: Sexism without the Pedestal," and Chapter 4, by Deegan, "Multiple Minority Groups: A Case Study of Physically Disabled Women," provide a conceptualization of women with disabilities that have had a significant impact on other people's thinking and writing about women with disabilities. In her chapter, Deegan points out the multiple discrimination against women with disabilities; as a woman and as a person with a disability. Deegan's discussion of the effects of the multiple minority status of women with disabilities is useful in examining structural discrimination in employment, education and other areas. Fine and Asch's conceptualization of disabled women as "roleless" has already gained much note in subsequent literature. The remaining sections focus on specific types of disabilities and their consequences for women or specific problem areas, such as mothering and self-help. Other issues covered are the economic effects of a multiple minority status and the negative consequences of present policies on the lives of women with disabilities.
The book is a beginning step in unraveling the interaction between more than one minority status being held concomitantly by an individual and a group. While the quality of the articles is not uniform, they all provide insights into the problems and experiences of these women and add immeasurably to the conceptual and theoretical understanding of the lives of women with physical disabilities. One shortcoming of the book is that it only deals with women who have physical disabilities. Another is that rather than examining class and race issues, it is dominated by white middle class views and values.
This classic book is still available via special order at Amazon.com
DeKlerk, H., & Ampousah, L. (2003, October). The physically disabled woman's experience of self. Disability and Rehabilitation, 25
(19), 1132-1139. Purpose:
With the Symbolic Interactionism as background it can be argued that physical disabilities and problems with personal appearance may have a negative influence on the physically disabled woman's social-psychological well-being. Method:
In order to explore the physically disabled woman's experience of Self, two unstructured interviews were conducted with 40 randomly selected disabled women between the ages of 21 years and 60 years. Results:
It was clear that others in general play an important role in the physically disabled woman's experience of Self. She not only compares herself with others in general, but also desires feedback from them. She accepts her disability but feels that her physical disability results in other people making negative inferences about her. Conclusion:
This has a negative influence on her Public Self, including her presentation of herself to others and their perceptions of her as a person, as well as her experience of the total Self.
Driedger, D. (2006, Summer). When the body protests: New versions of activism. Canadian Women’s Studies, 25
Driedger describes her long engagement within the disability rights movement, first while she was in good health, then subsequently being diagnosed with fibromyalgia, and then eventually with a diagnosis of breast cancer. Driedger recounts how as she experienced her own disabilities, she “knew that writing one's story had power…” and thus she “saw [it as] a new kind of activism--it was writing your way into peoples' consciousness, not marching in the streets” (p. 188).
Drummond, M. M., & McFarlane, J. D. (2001). Journey into friendship.
Frederick, MD: PublishAmerica.
The authors traveled the winding path from teenager to woman together. Their journey has had its ups and downs, its difficult times and its triumphs. Through all the twists and turns, however, they developed and kept a deep friendship intact and brought a greater sense of themselves out of the experience.
Duggan, C. H., Albright, K. J. & Lequerica, A. (2008). Using the ICF to code and analyse women's disability narratives. Disability & Rehabilitation, 30
(12), 978-990. Purpose.
This article describes the use of the World Health Organization's (WHO) International Classification of Functioning, Disability and Health (ICF) as a conceptual framework for processing and analyzing the narratives of 50 community-dwelling women with a spinal cord injury. The women were participants in a federally-funded study of stress and coping over the life course. Method.
The paper describes the development of a coding scheme and data reduction techniques used to process qualitative data. Results.
The initial results of three phases of data analysis are then presented: (i) the construction of matrices to display data so as to permit pattern finding; (ii) the mapping of specific ICF codes to text to produce a more finely grained analysis of environment-related stressors, and (iii) a thematic analysis of text depicting the dynamics of person-environment interaction. Conclusions.
Of potential value to the further elaboration of the ICF is a fleshing out of the personal factors component of the ICF and the provision of a context-driven, process view of person-environment interaction. It is hoped that this article will stimulate continued discussion of person-level factors. The concept of coupling suggests also a need to focus research attention on the bi-directional and ever evolving linkages connecting person to environment.
Dunn, R. (n.d.). Funny you should ask: Living with a disability.
Winnipeg: Council of Canadians with Disabilities.
In Funny You Should Ask
, Ms. Dunn presents a humorous collection of short stories which describe what it is like to be a woman living with a disability. Peter Carver in his foreword to Funny You Should Ask
writes, "For if there is content in these stories, there is also great style. The style of a humorist. You will find in these stories an observant eye, but an eye with a gleam in it. That is a great gift."
Dyck, I. (1995, February). Hidden geographies: The changing life-worlds of women with disabilities. Social Science and Medicine, 40
This paper discusses the microgeographies of unemployed women with multiple sclerosis, as they manage the physical, social and economic consequences of their illness. Recent directions in the geography of health and health care draw attention to the relationships between space, place and health experience, and in this paper a focus on the everyday lives of women with Multiple Sclerosis reveals the complex interweaving of space, physical impairment and gender in how they experience place. In-depth interviews were used in the study to investigate how women occupied and used home and neighbourhood space after leaving the paid labour force. The majority of women were found to experience shrinking social and geographical worlds which rendered their lives increasingly hidden from view as patterns of social interaction changed and use of public space diminished. The paper discusses the women's residential and household changes, mediated by marital and socio-economic status, and presents two brief case studies to illustrate the remapping of the meanings of work and place as women renegotiate their lifeworlds. The focus of the study on the spatio-temporal settings of the women's everyday lives revealed an interplay of biomedical discourse, policy structures, sociocultural norms and local sets of social relations that shaped the strategies the women used in reconstructing their lives. The women showed a diversity of responses, but these were all characterized by a restructuring of home and neighbourhood space, a recordering of personal relationships and increasing interpenetration of the public sphere in their private lives. The findings suggest that attention to the body in its geographical as well as social context provides an avenue for investigating the links between subjective experience and the broader social relations and processes which shape the illness experience.
The experiences of disabled women. (1995, August). Social Policy Research 81.
York, North Yorkshire, UK: Joseph Rowntree Foundation Retrieved April 1, 2005 from http://www.jrf.org.uk/knowledge/findings/socialpolicy/SP81.asp
“Disabled women feel they suffer from a broad range of discrimination according to the Disabled Women's Project. The project was designed to reach disabled women who had not had any previous contact with the disability movement and groups of women who were likely to be particularly discriminated against, such as black disabled women, disabled lesbians and disabled older women. The findings summarised here come from information given by disabled women participating in the project.”
Farber, R. S. (2000, May/June). Mothers with disabilities: In their own voice. American Journal of Occupational Therapy, 54
(3), 260-268. Objectives:
The purpose of this study was to gain an understanding of the personal experience of women with disabilities engaged in the occupation of mothering and their perceptions of their interpersonal environment, including interaction with family, professional caregivers, and the community. Method:
In this qualitative study, in-depth interviews were conducted with a diverse sample (n=8) of mothers with disabilities or chronic illnesses to uncover the nature of their mothering experience. Data were analyzed for themes with the constant comparison approach of grounded theory. Results:
The quality of the participants' experience varied with the degree of perceived similarity or dissimilarity with other mothers and acceptance of these differences. In addition, their perception of the supportive or nonsupportive nature of their interpersonal environment had an impact on their mothering experience. Conclusion:
The results suggest that mothers with disabilities tend to value the importance of performing maternal occupations according to a perceived culturally common way, although self-acceptance of their own unique differences in performing these occupations facilitates maternal engagement as well.
Feinstein, S., & D'Errico, N. C. (2009). Tanzanian women in their own words: Stories of disability and illness.
Lanham, MD: Lexington Books. Tanzanian Women in Their Own Words
is a compilation of oral histories by Tanzanian women living with disabilities or chronic illnesses. Beginning with their earliest childhood memories, the narrators weave their life stories through adulthood, telling of the hardships and support systems in their daily lives. A rich knowledge of Tanzanian culture is embedded in each story; for instance the pivotal role tribal affiliation, polygamy, and poverty play in society is addressed. HIV/AIDS, cancer, polio, female circumcision, and TB are just a few of the health issues covered; Feinstein and D'Errico make a concerted effort to include the major medical challenges facing this developing country, including an interview with an albino woman that introduces the little discussed atrocity of albinos being murdered for body parts to be used in ritual medicine practices.
In spite of the abuse and exclusion many of the women suffer, eventually each learns to live in harmony with her reality. This makes their lives inspiring and gives perspective to those facing physical challenges. Tanzanian Women in Their Own Words
encourages readers to consider issues of health care, transportation, ignorance, polygamy, gender discrimination, and rural isolation. Through learning about the health challenges faced by Tanzanian women, students are introduced to the lifeways and concerns of Tanzanian culture, the challenges faced by many developing countries, and the intimate and evocative level of detail that can only be discovered through intensive ethnographic fieldwork.
Fine, M., & Asch, A. (Eds.). (1988). Women with disabilities: Essays in psychology, culture and politics
[Health, Society and Policy]. Philadelphia: Temple University Press.
So far, this is the most comprehensive edited collection of scholarly writing about women with disabilities. Fine and Asch, the editors of this volume, have, for a number of years, been involved in examining what it means to be a women with a disability in today's society. Their early conceptualization of the problems facing women with disabilities has influenced and informed other people's thinking. Now these two women have collected the work of 22 writers and thinkers to explore the psychological, cultural and political dilemmas currently faced by approximately 18 or 19 million women with disabilities in America. The volume covers a wide range of issues, reviews the most recent thinking on this subject and raises provocative new areas for future exploration.
The 13 essays in the volume are loosely organized in three categories; "Bodies and Images," "Disabled Women in Relationships," and "Policy and Politics." In addition there is a lengthy introduction by Asch and Fine where they review past work (and neglect) on this subject and point toward future exploration. The editors also close the book with an "Epilogue: Research and Politics to Come." Like in all collections of essays, the quality is uneven. At the same time this is an important document about the lives of girls and women with disabilities in American society today. It is also notable that the editors have made attempts to cover broader issues than previous collections on women with disabilities. First, this volume covers a broader range of disabilities than many previous writings. An example of this the inclusion of women with developmental disabilities, a group that has traditionally been neglected in volumes on women with disabilities. Second, the volume deals with issues that often have been neglected such as disability and ethnicity; the moral dilemma between a reproductive rights and disability rights; and an analysis of the exclusion of women with disabilities from the women's movement. The volume also includes a discussion about girls with disabilities. This is a book that everyone interested in the lives and experiences of women with disabilities should read.
Finger, A. (1990). Past due: A story of pregnancy, disability and birth.
Emeryville, CA: Seal Press.
"Th[is] story of the traumatic birth, and the grueling experience of parents waiting to see if a critically ill infant will live--and how--is riveting reading. Finger's anger at various people and agencies involved in her own and her child's medicalizations is authorized both by the details of her experience and by her unremitting honesty about her own complex, mixed, and not always pretty reactions to the extreme and unexpected difficulty of a longed-for experience of birth and parenting."
Finger, A. (2006). Elegy for a disease: A personal and cultural history of polio.
New York: St. Martin's Press.
“In skillful prose, Finger merges memoir with historical narrative about how polio was viewed and dealt with in the years before the Salk vaccine was invented 50 years ago. Evocative and often poetic, the memoir is also a litany of the miserable, useless, even harmful treatments imposed by helpless doctors on suffering children. She offers a nuanced history, for instance, of the painful and unorthodox heat treatments espoused by Elizabeth Kenny. Finger (Bone Truth), a creative writing teacher at Wayne State and the University of Texas at Austin, was a toddler when she contracted polio in 1954 and describes the traumatic operations, beginning when she was six, that led in turn to complications when she was in her 40s. Taught to believe that she could overcome her disability, Finger overexercised and, while living in England, attended antiwar demonstrations that were physically dangerous. Hospitalized with depression at 20, Finger believes her emotional state can be attributed to polio's effects on the brain in addition to having an abusive father who once choked her during a rage. After years of dissociating herself from others who had had polio, Finger writes, she slowly began her involvement in the disability rights movement and has dealt with a diagnosis of postpolio syndrome.”
Finke, B. (2003). Long time, no see.
Urbana and Chicago: University of Illinois Press.
Beth Finke was a 26-year-old newlywed with a promising career when juvenile diabetes caused her to lose her sight. Journals kept during eye surgeries and transcribed onto Finke's talking computer became the foundation for Long Time, No See
, a book celebrating how ordinary people can work through extraordinary difficulties.
With unflinching candor and acerbic wit, Finke chronicles the ups and downs of her marriage, her rocky training period with a seeing-eye dog, her struggles to find employment, and life with her son Gus, born with special needs of his own.
Finke's life story and her commanding knowledge of her situation give readers a clear understanding of diabetes, blindness, and the issues faced by parents of children with significant disabilities. Because she has taken care to include accurate medical information as well as personal memoir, Long Time, No See
serves as an excellent resource for others in similar situations and for professionals who deal with adults or children who have disabilities.
Fischer, P. C. (2001). Putting theory into practice: A psychologist’s story. In E. Kaschack (Ed.), Minding the Body: Psychotherapy in Cases of Chronic and Life-Threatening Illness [Feature issue]. Women & Therapy, 23
A diagnosis of breast cancer is a frightening and life-changing experience. It affects not only the physical body, but also one’s psychological well-being and basic assumptions about the world. Paradoxically, having breast cancer can provide an opportunity for personal growth and finding new meaning in life. While coping with cancer is basically an individual task, coping skills, social support, and an empathic therapist can help the breast cancer patient manage this stressful time. This article explores my own experience with breast cancer and the resources and coping strategies that were most helpful in getting through this frightening time. I will discuss how my experience forced me to face my own mortality and led me to an inner strength and courage that I had not used before. By joining the ranks of those who have faced intense anxiety and fear during a serious life crisis, I have greater empathy for and understanding of my own patient’s struggles.
Fiser, K. (1992). Words like fate and pain.
Hanover, NH: Steerforth Press.
This volume is divided into four parts, each containing powerful and fairly short poems--rarely longer than one page and often less than 30 lines--that share the author's experience of disability. The four sections unfold the struggle of coming-to-terms with disability organically, beginning with the body and concluding with the will to survive and transcend the physical.
Section One considers the role of fate or luck, the burden of chronic pain, the desire to escape physical limitations, and the difficulty of adjusting to an altered self image. The sections that follow offer poems that attempt to understand disability intellectually and viscerally, to look beyond the suffering self to the suffering of others, and finally to love and accept what's given.
What makes this collection both moving and universal is that the author writes about disability without self-pity or sentimentality. Her poems are deceptively simple, drawing the reader in on multiple levels--both the complexity and power of disability from the author's point of view as well as from the vantage of an observer who is not yet, but may at any time become, disabled.
Frank, G. (2000). Venus on wheels: Two decades of dialogue on disability, biography, and being female in America.
Berkeley: University of California Press.
In 1976 Gelya Frank began writing about the life of Diane DeVries, a woman born with all the physical and mental equipment she would need to live in our society--except arms and legs. Frank was 28 years old, DeVries, 26. This remarkable book--by turns moving, funny, and revelatory--records the relationship that developed between the women over the next twenty years. An empathic listener and participant in DeVries's life, and a scholar of the feminist and disability rights movements, Frank argues that Diane DeVries is a perfect example of an American woman coming of age in the second half of the twentieth century. By addressing the dynamics of power in ethnographic representation, Frank--anthropology's leading expert on life history and life story methods--lays the critical groundwork for a new genre, "cultural biography."
Challenged to examine the cultural sources of her initial image of DeVries as limited and flawed, Frank discovers that DeVries is gutsy, buoyant, sexy--and definitely not a victim. While she analyzes the portrayal of women with disabilities in popular culture--from limbless circus performers to suicidal heroines on the TV news--Frank's encounters with DeVries lead her to come to terms with her own "invisible disabilities" motivating the study. Drawing on anthropology, philosophy, psychoanalysis, narrative theory, law, and the history of medicine, Venus on Wheels is an intellectual tour de force.
Freeberg, E. (2002, October). The education of Laura Bridgman: First deaf and blind person to learn language.
Boston: Harvard University Press.
In the mid-nineteenth century, Laura Bridgman, a young child from New Hampshire, became one of the most famous women in the world. Philosophers, theologians, and educators hailed her as a miracle, and a vast public followed the intimate details of her life with rapt attention. This girl, all but forgotten today, was the first deaf and blind person ever to learn language.
Laura's dark and silent life was transformed when she became the star pupil of the educational crusader Dr. Samuel Gridley Howe. Against the backdrop of an antebellum Boston seething with debates about human nature, programs of moral and educational reform, and battles between conservative and liberal Christians, Freeberg tells this extraordinary tale of mentor and student, scientist and experiment.
Under Howe's constant tutelage, Laura voraciously absorbed the world around her, learning to communicate through finger language, as well as to write with confidence. Her remarkable breakthroughs vindicated Howe's faith in the power of education to overcome the most terrible of disabilities. In Howe's hands, Laura's education became an experiment that he hoped would prove his own controversial ideas about the body, mind, and soul.
Poignant and hopeful, The Education of Laura Bridgman
is both a success story of how a sightless and soundless girl gained contact with an ever-widening world, and also a cautionary tale about the way moral crusades and scientific progress can compromise each other. Anticipating the life of Helen Keller a half-century later, Laura's is a pioneering story of the journey from isolation to accomplishment, as well as a window onto what it means to be human under the most trying conditions.
Gates, B. T. (2005, Spring). When life writing becomes death writing: The journal of Emily Shore. In M. Stoddard Holmes & T. Chambers (Ed.), Narrative, pain and suffering [Special issue]. Literature and Medicine, 24
The recently discovered manuscript of Emily Shore's last journal, 1839, yields a number of interesting insights into the Victorian illness narrative. Shore inscribed this final journal in Madeira, where she had repaired to try to recover from tuberculosis. Unfortunately, she died there, only a few months after her arrival. Journal entries for Shore's last months are both poignant and revealing in terms of their narrative strategies. The last journal begins as a kind of travel narrative and study of island and family life, but it is transformed first into a careful relational narrative about others afflicted with the disease and then into a kind of spiritual autobiography. It ends abruptly with staccato entries made in an altered hand as Shore tries to record her last thoughts while fatally ill.
Geller, J. L. (1995). Women of the asylum: Voices from behind the walls, 1840-1945.
New York: Anchor Books.
The 26 women who tell their stories here were incarcerated against their will, often by male family members, for holding views or behaving in ways that deviated from the norms of their day. The authors' accompanying history of both societal and psychiatric standards for women reveals the degree to which the prevailing societal conventions could reinforce the perception that these women were "mad."
Gibbs, R. W., & Franks, H. (2002). Embodied metaphor in women’s narratives about their experiences with cancer. Health Communication, 14
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.
Gilman, C. P. (1991). The living of Charlotte Perkins Gilman: An autobiography
[Wisconsin Studies in Autobiography]. Madison, WI: University of Wisconsin Press.
Gilman (1869-1935), a leader of the women's movement, is best known for her autobiographical short story “The Yellow Wallpaper,” about a trapped housewife who goes mad, and her treatise “Women and Economics.” This autobiography was completed in 1935, when Gilman's reputation was waning and she had been diagnosed with breast cancer. Her last chapter is both a farewell and an argument for euthanasia; shortly after completing it she committed suicide. Long out of print, this volume documents Gilman's unhappy childhood with a mother who could not show affection, then her failed attempt at marriage and motherhood, which drove her to a breakdown and, subsequently, divorce. Gilman describes her long career as a social activist, writer and lecturer, during which she suffered continuing bouts of depression. Although one wishes for a more candid insight into her remarkable life, Gilman's views on women's equality, marriage, birth control and sex education are provocative and contemporary. This is a valuable contribution to understanding an important feminist thinker.
Gitter, E. (2001). The imprisoned guest: Samuel Howe and Laura Bridgman, the original deaf-blind girl.
New York: Farrar, Straus and Giroux.
In 1837, Samuel Gridley Howe, director of Boston's Perkins Institution for the Blind, heard about a bright, deaf-blind seven-year-old, the daughter of New Hampshire farmers. At once he resolved to rescue her from the "darkness and silence of the tomb." And indeed, thanks to Howe and an extraordinary group of female teachers, Laura Bridgman learned to finger spell, to read raised letters, and to write legibly and even eloquently.
Philosophers, poets, educators, theologians, and early psychologists hailed Laura as a moral inspiration and a living laboratory for the most controversial ideas of the day. She quickly became a major tourist attraction, and many influential writers and reformers visited her or wrote about her. But as the Civil War loomed and her girlish appeal faded, the public began to lose interest. By the time Laura died in 1889, she had been wholly eclipsed by the prettier, more ingratiating Helen Keller. The Imprisoned Guest
retrieves Laura Bridgman's forgotten life, placing it in the context of nineteenth-century American social, intellectual, and cultural history. Her troubling, tumultuous relationship with Howe, who rode Laura's achievements to his own fame but could not cope with the intense, demanding adult she became, sheds light on the contradictory attitudes of a "progressive" era in which we can find some precursors of our own.
Glenn, M. (Ed.). (1974). Voices from the asylum.
New York: Harper & Row.
This is a book about what goes on in mental hospitals and is written by people who have first hand knowledge of these institutions. It is primarily written by "patients" (as the editor calls them), but also by attendants, doctors, and others. The editor states that most people who live in mental institutions come from society's oppressed groups; working people, poor people, cultural minorities, and women. He argues that the ruling class first creates conditions which drive people "crazy" and then creates institutions where they are locked up and provided with "treatment" which is often worse than their original problem. Part II, which is the largest part of the book, consists of first-person accounts where people tell of their experiences in mental hospitals. Almost all of the contributors to this section are women. The editor says that women were the ones who responded the most to his call for personal accounts and manuscripts, and argues that, "This is no accident. Women have been especially oppressed by psychotherapy" (p. 51). Many of the women who contribute to this book describe the relationship between their gender-role and their mental problems.
Gordan, P.A., Feldman, D., & Crose, R. (1998, July/September). The meaning of disability: How women with chronic illness view their experiences. Journal of Rehabilitation, 64
The purpose of this descriptive study was to examine perceptions regarding the experience of disability for 40 women with chronic illness. The participants, all between the ages of 28 and 79, were diagnosed with either multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, osteoporosis, or a combination of these disorders.
Grandin, T. (1995). Thinking in pictures: And other reports from my life.
New York: Bantam Doubleday Dell Publishers Groups, Inc. Thinking In Pictures
is about the childhood and development of Temple Grandin, a woman with autism. She likens herself to the robotic character, Data, on the science fiction television program, Star Trek: The Next Generation
. She says words are like a second language to her, noting that she thinks primarily in images. Grandin, who holds a Ph.D. in animal science and has designed equipment that revolutionized the livestock industry, proposes that genius and autism may sometimes be closely related.
Grandin, T. (1996, August). Emergence: Labeled autistic.
New York: Warner Books, Inc.
A true story that is both uniquely moving and exceptionally inspiring, Emergence is the first-hand account of a courageous autistic woman who beat the odds and cured herself. As a child, Temple Grandin was forced to leave her "normal" school and enroll in a school for autistic children. This searingly honest account captures the isolation and fears suffered by autistics and their families and the quiet strength of one woman who insisted on a miracle.
Grealy, L. (1994). Autobiography of a face.
New York: HarperCollins. Autobiography of A Face
is Lucy Grealy’s compelling account of her experience with childhood cancer. The narrative’s starting point of view is that of Grealy as a child, from her early diagnosis at age nine, replete with the singular distinction of being sick and thus being special and not having to turn in a book report, through surgery that removed half of her jaw, almost three years of radiation and chemotherapy, to her growing awareness that she is alone and experientially set apart from her family, her classmates, and her physicians. The book chronicles her hospital and school experiences (an encounter with her junior high guidance counselor is particularly poignant) as well as her internal struggle to eschew the mirrors that reflect difference, what she gradually realizes is, by society’s standards, her “ugliness” or to embrace the mirrors that reflect liberation from image and instead reflect the face of the self. Many issues converge in this account, including family attitudes (bravery, not crying, and minimizing expressing pain are valued), the cruelty of children, the medicalization of difference (Grealy underwent 15 years of surgery to “improve” her appearance), beauty and Beauty, and self-awareness and freedom from the dictates of society.
Hanna, W. J., & Rogovsky, E. (1991). Women with disabilities: Two handicaps plus. Disability, Handicap & Society, 6
Through surveys, the authors sought to understand the experiences of women with disabilities. Comparing these women to disabled men, non disabled men, and non disabled women, they found that women with disabilities participate less in social relations, educational institutions, and the labor force than expected when compared to their non disabled/disabled/male/female counterparts. They cite this isolation as being attributed to the nurturance and the attractiveness norms of the American socio-cultural system. The authors address the issue of self-concept, stating that women with disabilities often have poor self-concepts, and they link this poor self concept in a circular causation to participation and socio-cultural influences.
Harrison, J., & Rousso, H. (1989). Positive images: Portraits of women with disabilities
[Film]. New York: Women Make Movies.
People with disabilities constitute nearly twenty percent of the American population. Sexism and often racism compound discrimination based on disability. Designed to provide positive, realistic pictures of the lives of women with disabilities and the social, economic, and political issues they face, Positive Images
focuses on three strong and articulate women. Offering crucial role models for women and girls with disabilities, this powerful tape also locates disability as a women's issue of concern to us all by discussing education, employment and careers, sexuality, family life and parenting, and societal attitudes.
Hathaway, L. B. (2000, January). The little locksmith: A memoir.
New York: The Feminist Press. The Little Locksmith
begins in 1895 when a specialist straps five-year-old Katharine, then suffering from spinal tuberculosis, to a board with halters and pulleys in a failed attempt to prevent her being a "hunchback." Her mother says that she should be thankful that her parents are able to have her cared for by a famous surgeon; otherwise, she would grow up to be like the "little locksmith," who does jobs at their home; he has a "strange, awful peak in his back." Forced to endure "a horizontal life of night and day," Katharine remains immobile until age fifteen, only to find that she, too, has a hunched back and is "no larger than a ten-year-old child." The Little Locksmith
charts Katharine's struggle to transcend physical limitations and embrace her life, her body and herself in the face of debilitating bouts of frustration and shame. Her spirit and courage prevail, and she succeeds in expanding her world far beyond the boundaries prescribed by her family and society: she attends Radcliffe College, forms deep friendships, begins to write, and in 1921, purchases a house of her own in Castine, Maine. There she creates her home, room-by-room, fashioning it as a space for guests, lovers, and artists. The Little Locksmith
stands as a testimony to Katharine's aspirations and desires-for independence, for love, and for the pursuit of her art.
Hebald, C. (2001). The heart too long suppressed: A chronicle of mental illness.
Boston: Northeastern University Press. The Heart Too Long Suppressed
documents, from a personal viewpoint, schizophrenia as an unconscious choice. It is my aim that readers might recognize similar choices in themselves, or in loved ones, who have succumbed to the seeming certainty that there are none.
In tracking the development of my former illness from infancy through middle age, I place within a historical context my and my helpers’ errors in judgment. I pinpoint what went wrong. What is the meaning of schizophrenia? To answer I re-enter the experience and clarify in human terms those “dissociative states of being” and “splits between mind and feeling” by which we are clinically defined. Is there really a private world peculiar to schizophrenics? In taking the reader through mine, I show an inner world of dream and desire at odds with an outer world of fact and experience common to us all. For what did I earn my label? How and why did I inadvertently court it? By what means did I get well? Answers to these questions point to my contribution to the field.
I am not the first ex-patient to report that conditions in most psychiatric hospitals are breeding grounds for the eruption of psychotic behavior, but I hope to be among the last. To this end I address their ideal purpose as havens for the release of intolerable and so-called inappropriate feelings.
Finally, I question the widely-held belief that schizophrenia is a brain disease. Hospital records indicate no biomedical condition underlay mine. I am an exception, others exist. Why, despite us, is the international psychiatric community so eager to embrace this latest “definitive” theory? Is it because it lets them, patient families who foot their bills, and patients themselves, off the hook insofar as responsibility for the illness is concerned? This implicit, if not explicit, question lies at the heart of my book.
Herndl, D. P. (2006). Our breasts, our selves: Identity, community, and ethics in cancer autobiographies. Signs: Journal of Women in Culture and Society, 32
“This essay explores four volumes of collective autobiography in which women who have/had breast cancer simultaneously struggle with writing a new identity and creating an ethical narrative. Overwhelmingly, writers of breast cancer autobiography construct narratives that attempt to paint a positive picture of recovery and healing, but are such narratives unproblematically true? What are their political consequences? In what ways do the body, its inadequacies, and its fragmentation become part of a new narrative identity? I come to these questions as a feminist critic who has been writing about women, illness, and narrative for more than fifteen years but also as a six-year survivor of breast cancer. In this essay I want to embody the tension between the immediate purpose (or even need) of narrative and the larger structural and cultural politics of it. To whom and to what end do critical ethics answer?” (pp. 221-222)
Hiersteiner, C. (1999). Viewing a mental health service maze from the inside out: Women clients share their stories. Women & Therapy, 22
The purpose of this qualitative inquiry is to describe the experiences of women who have been long-term consumers of mental health services and to understand the meaning and quality of care from their inside point of view. The American mental health service system might be better described as a maze or as a ‘‘non-system,’’ requiring important maneuvering skills on the part of clients. Women are the largest consumer group of mental health services and, due to their contextual, person-in-environment thinking, are expert observers of the people and processes in a network designed to help with psychological and emotional distress. Social justice ethics support the recording of their stories, historically suppressed and marginalized, and call for system-wide collaboration and cooperation on their behalf.
Heppner, C. M. (1992). Seeds of disquiet: One deaf woman's experience.
Washington, DC: Gallaudet University Press.
In her autobiography Seeds of Disquiet
, Cheryl Heppner writes of experiencing severe hearing loss--twice. Spinal meningitis caused a profound loss of hearing when she was six, and for the next 18 years she worked hard to live the life of a "normal" hearing person. Through exhaustive work in speech therapy and speechreading, she excelled in school and college, performing Herculean feats without the assistance of trained interpreters or notetakers. Then, when she was 25, two strokes left her completely deaf. For the next 20 years she worked to recreate her life through sign language and the Deaf community. The process stunned her by revealing how much she had missed before. Initially embittered, Cheryl Heppner later went on to use her astonishing energy as an advocate for deaf and hard of hearing people. Seeds of Disquiet
celebrates her accomplishments, the most significant of which, perhaps, was her reconciliation with her loved ones from her former life with her new outlook.
Herrera, H. (2002). Frida: A biography of Frida Kahlo
(Reprint ed.). New York: Harper Perennial.
Women with disabilities are rarely celebrated for their lives and contributions in the general literature. The biography of the legendary Mexican painter, Frida Kahlo, is a rare exemption. This extensive account of Frida's life and art describes her childhood in Mexico City during the Mexican Revolution; her stormy marriage to muralist Diego Rivera; her political activities; and her absorption in Mexican culture and folklore.
The book also describes Frida's disability which she acquired at the age of eighteen, when a bus she was riding on was rammed by a streetcar in Mexico City. In this accident Frida's spine was fractured, her pelvis crushed, and one foot broken. From that day, till her death twenty-nine years later, Frida lived with physical impairments which caused her considerable pain, constant threat of illness, and inability to have children.
The majority of Frida's paintings are self-portraits, many of which center around her pain and struggle with her disability. Painting herself bleeding, weeping, and cracked open, she transforms her pain into art with remarkable frankness tempered by humor and strength. Despite Frida's focus on her disability in her self-portraits, her autobiography in paint does not reflect self-pity, but a peculiar intensity and strength.
Frida died at the age of forty seven in 1954 and it was not till two decades after her death, that she became internationally known as a painter. Since the 1970s, her paintings have received increasing amount of attention and admiration. Today, Frida is celebrated as one of the greatest artists of the 20th century. The book is generously illustrated with 127 pictures of Frida's life and her powerful paintings, 35 of these illustrations are in color. A very powerful book.
This book was adapted into a feature film starring Salma Hayek and Alfred Molina in 2002.
Hershey, L. (1993). Coming out in voices. Women and Therapy, 14
This study articulates the personal experiences of a woman with a physical disability who enters therapy to explore issues involving lesbian identity, health and illness, disability oppression and pride, and relationships. Written in the first person, the study uses anecdotes, poetry, and journal entries to chart the author's process of self-discovery. As a woman, a lesbian, and a person with a disability, the author frequently finds herself at odds with the culture around her. This creates conflicts between the author's real self, and the self she must present to others. She discusses how she had learned to "silence the voices" which were not useful in challenging stereotypes, making others comfortable, or communicating with assistants. The author describes how therapy offered her the opportunity to unlearn the silence, value all of her voices, listen to herself, resolve her internal dilemmas, and develop a deeper sense of self.
Hershey, L. (various dates). Poems and tapes: On the lawn
, In the way
, Dreams of a different woman
(these are books of poetry); The prostitutes of Nairobi
, You get proud by practicing
(these are tapes of the author reading her poems). Denver, CO: Author.
Hershey’s very powerful poems are about disability rights and lesbian sexuality. Her work includes essays in a variety of periodicals as well as these books and tapes. Well worth sending for, at $5 per book and $7 per tape. Some of the poems can be read at http://www.cripcommentary.com/
and the booklets can be ordered at http://www.disabilitypride.com/products.php?id=6
Hewett, H. (2004, Summer). My sister’s family. In J. Baumgardner & A. Richards (Eds.), Young Feminists Take on The Family. The Scholar & Feminist Online, 2
(3). Retrieved March 2, 2005 from http://www.barnard.edu/sfonline/family/hewett_01.htm
“The pages that follow draw from the years I have spent observing my parents and the members of our extended family striving to create a rich and meaningful life for my sister. While noting some of the important work authored by disability studies and feminist scholars, this essay focuses on my family's experience in its exploration of the thorny issues that families with disabilities face. My hope is that our story will join the collective cry for a more inclusive vision of family and for social policies that support all families, including those who fall outside of what, in this country, is deemed `normal.’”
Horner, J. (1982). That time of year: A chronicle of life in a nursing home.
Amherst, MA: The University of Massachusetts Press.
This book is a chronicle of Jocey Horner's life in a nursing home. Jocey Horner, a writer and a retired English professor, entered a nursing home in 1974 after becoming disabled by arthritis and a fall where she broke a number of bones. She lived in the nursing home for three years and kept a journal of her experiences. The book provides a very powerful description of these last three years of this one woman's life as well as giving insights into the lives of people who live in nursing homes in general.
Hubert, S. J. (2002). Questions of power: The politics of women's madness narratives.
Newark: University of Delaware Press. Questions of Power: The Politics of Women's Madness Narratives
explores the ways in which women have used autobiographical writing in response to psychiatric symptoms and treatment. By addressing health and healing from the patient's perspective, the study raises questions about psychiatric practice and mental health policy. The ultimate thesis is that autobiographies by women psychiatric patients can expose many of the problems in psychiatric treatment and indicate directions for change.
Hughes, M. (2001). Women and disabilities: It isn't them and us.
Sonora, CA: LadyBugPress.
As a disabled single parent, Mona Hughes understands the difficulties of raising a child alone. As a disabled woman, she knows the discrimination women face and the double discrimination disabled women encounter. A former counselor, she understands the stresses of life and their affect on our bodies. A survivor of polio, post polio syndrome, marriage, divorce, and aging as a woman and a woman with a disability, she understands the strengths women have.
She has written a weekly newspaper column on disabilities for The Orlando Sentinel
for over five years, consults for several organizations on disabilities, and has many active roles within the disabled community and in creating bridges to the mainstream.
In Women and Disabilities: It Isn't Them and Us
, Hughes uses the personal, interview story style that has characterized her writing to humanize a thoroughly researched resource list. This is a book that should be on every woman's bookshelf.
Irvin, C. (2004). Home bound: Growing up with a disability in America.
Philadelphia: Temple University Press.
"When I was growing up, I learned that if you were a girl you went to school and college, then you married, became a wife and had a family.… When I became disabled, my journey, I was pretty sure, was not going to take me in those directions. What was I supposed to be? What kind of life was I supposed to have?"
Once polio had made her a quadriplegic, Cass Irvin didn't know where she fit in or what would become of her. Neither did her parents, teachers, counselors, or rehabilitation therapists. And so began her search for a place to call home.
In this memoir, Cass Irvin tells of the remarkable journey that transformed her from a young girl too timid to ask for help to a community activist and writer who speaks forcefully about the needs of people with disabilities. As a young girl she was taken to Warm Springs, Georgia, where she learned about living as a disabled person and found a hero in Franklin Delano Roosevelt, the famously if silently disabled president. Bright and inquisitive, Cass soon began to question the prevailing assumptions of a society that had no place for her and to question her own meekness.
In time, her keen sense of injustice gave her the courage to fight for a college education. That personal victory emboldened her to find the means to live independently, but it also persuaded her that political work is the key to enabling all people with disabilities to live fulfilling lives. This book, then, is testimony to the importance of community building and organizing as well as the story of one woman's struggle for independence.
Jackson, J. (1992). Letters from our lives
[Film]. Reading, PA: Bullfrog Films.
"Disabled women are often isolated and hidden away, so we know very little about their struggles. To mark the end of the United Nations' Decade of Disabled People in 1992, disabled women from around the globe have written open letters to the world describing their individual plights. In parts of the world where being a woman automatically demotes one to being a second class citizen, being a disabled woman represents a double dose of discrimination. In this moving program, we hear the sadness and the hope of disabled women in Zimbabwe. We share in their struggle to survive on a daily basis and to create a better world for their children. Not only will Letters from Our Lives
foster a deeper understanding of people with disabilities, but it will send an inspirational message to anyone facing a hardship. It will touch a deep chord within all viewers."
Jacobson, D. (Ed.). (2000, July). Advocate for Disabled Women's Rights and Health Issues - Corbett O'Toole.
Berkeley: Disability Rights and Independent Living Movement Oral History Series, Regional Oral History Office, The Bancroft Library, University of California. Retrieved February 28, 2005 from http://texts.cdlib.org/dynaxml/servlet/dynaXML?docId=kt4779n6sq
“Corbett O'Toole was invited to participate in the Disability Rights and Independent Living Movement Oral History Series because of her leadership in promoting the international empowerment of women with disabilities. With her involvement with the disabled women's rap group in Berkeley in 1974, the Center for Independent Living's KIDS (Keys to Introducing Disability in Schools) Project in the late seventies, the Disabled Women's Educational Equity Project in the early eighties, and the United Nations Conference on Women in Beijing in 1995, Ms. O'Toole's focus has been to develop global networking among disabled women to deal with issues they face in the political, social, and economic spectrums around the world….”
Jamison, K. D. (1997). An unquiet mind: A memoir of moods and madness.
New York: Vintage Books.
As a founder of UCLA's Affective Disorder Clinic and a co-author of a standard medical text, Dr. Kay Redfield Jamison may be the foremost authority on manic-depressive illness. She is also one of its survivors. And it is this dual perspective--as healer and healed--that makes Jamison's memoir so lucid, learned, and profoundly affecting.
Even as she was pursuing her psychiatric training, Jamison found herself succumbing to the exhilarating highs and paralyzing lows that afflicted many of her patients. Though the disorder brought her seemingly boundless energy and mercurial creativity, it also propelled her into spending sprees, episodes of violence, and an attempt at suicide.
Johnson, K. (1998). Deinstitutionalising women: An ethnographic study of institutional closure.
Cambridge, UK: Cambridge University Press
This ethnographic study of deinstitutionalization explores the lives of women living in a locked ward within an institution for people with intellectual disabilities. Johnson describes in rich and carefully observed detail the lives of the women in the institution largely through their own stories and experiences. The closure of this institution gave her a unique opportunity to closely examine the impact of deinstitutionalization on these women, and the book explores the paradoxical discourse of rights and management that is part of this process.
Jones, M. (2004). Whisper writing: Teenage girls talk about ableism and sexism in school.
New York: Peter Lang Publishing, Inc.
In Whisper Writing
three teenage girls share their stories about life as students, as young women with disabilities, and as minorities in a male-dominated special education school culture. Their stories are unique because of their disability label and the experiences that go along with such a label. Trapped in an artificial school culture created by educators, these girls have gained valuable insight about power and subordination both in and out of school. Their narratives, along with extensive observations and interviews with these students and their peers, will both stun and enlighten the reader, prompting questions about current school practices involving segregation, a curriculum of control, and the devaluing of students with disabilities—particularly those with behavior issues.
Katz, E., Cheyney, C., Cyrus, B., & Parsons, F. M. (2005, March). Deaf women's lives: Three self-portraits
[Deaf Lives Series Vol. 3]. Washington, DC: Gallaudet University Press.
Three deaf women with widely varying stories share their experiences in this unique collection, revealing the vast differences in the circumstances of their lives, but also striking similarities. In Bainy Cyrus’s All Eyes, she vividly describes her life as a young child who was taught using the oral method at the Clarke School for the Deaf in Northampton, MA. Her account of the methods used (for example, repeating the same word over and over again, as many as 35 times), animates the extraordinary amount of work performed by deaf children to learn to read and speak. Cyrus also relates the importance of her lifelong friendships with two girls she met at Clarke, and how the different paths that they took influenced her as an adult.
Eileen Katz’s story, as told to Celeste Cheyney, offers a glimpse into a deaf girl’s life a generation before Cyrus. In Making Sense of It All: The Battle of Britain Through a Jewish Deaf Girl’s Eyes, Katz juxtaposes the gradual learning of the words who, what, where, and why with the confusing events of 1938 to 1941. As she and her fellow students grasped the meanings of these questions, they also realized the threat from the Nazi air attacks upon England. Katz also understood the compound jeopardy that she and her classmates faced by being both deaf and Jewish.
In contrast to the predominantly oral orientation of Cyrus and Katz, Frances M. Parsons writes of a year-long journey overseas in 1976 to lecture about Total Communication. Parsons traveled to Iran, India, Ceylon, Thailand, Malaysia, Singapore, Hong Kong, Taipei, the Philippines, Australia, and seven countries in Africa to teach administrators, teachers, and deaf students to communicate using sign, speechreading, writing, and any other means available. Her harrowing and fascinating anecdotes detail visits to ministries of education, schools, hospitals, clinics, palaces, hovels for the poorest of the poor, and all kinds of residential homes and apartments. Taken together, her travels testify to the aptness of her title I Dared!
The combined effect of these three Deaf women’s stories, despite the variation in their experiences, reveals the common thread that weaves through the lives of all deaf individuals.
Keith, L. (Ed.). (1994). Mustn't grumble: Writings by disabled women.
London: The Women's Press, Ltd.
This edited book, compiled by a disabled woman, presents writings by other women who have a range of physical disabilities. The short stories and poems included in this book range in topic from issues of accessibility to abuse to equality. Disability is framed by these narratives as a social, cultural, and political issue, not only as a personal one. This is an excellent account of disability issues from a woman's perspective. It is powerful, moving, and educating for all readers.
Keith, L. (Ed.). (1996). What happened to you? Writings by disabled women.
New York: The New Press.
Lois Keith compiled collections of fiction, essays, and poetry by disabled women in her new book, What Happened To You?
Her goal is to give women with disabilities a space to express their views on such topics as abuse, equality, sexuality, prejudice, and legislation dealing with disability issues. These narratives construct disability as a cultural and political issue, not only as a personal one.
Kingston, A. K. (2003, April 20-24). Maternal power against a deaf Irish state: Unearthing the narratives of mothers of children with learning disabilities.
Paper presented at Gender and Power in the New Europe, the 5th European Feminist Research Conference, Lund University, Sweden. Retrieved March 31, 2005 from http://www.5thfeminist.lu.se/filer/paper_319.pdf
“This paper discusses findings from a qualitative study of mothers with children with Autistic Spectrum Disorders, Down syndrome and/or Attention Deficit Hyperactivity Disorder (ADHD) in Ireland. Firstly, I will give a brief historical introduction to existing disability policies in Ireland and give examples of the power struggle between mothers and the Irish State. Secondly, I discuss my preliminary research findings of my participants’ lived experience of mothering a child with special needs. Finally, I will argue that the feminist movement has ignored this group of women in our society who, as active agents for their children, are fighting a very lonely battle and need a structured feminist forum for emancipation.”
Kirk, G., & Okazawa-Rey, M. (Eds.). (1998). Women’s lives: Multicultural perspectives.
Mountain View, CA: Mayfield Publishing Co.
Among the diverse articles in this volume are several representing the viewpoints of women with disabilities, including one on reproductive rights by Marsha Saxton and one on parents with disabilities by Carol Gill.
Kirkebæk, B. (2005, September). Sexuality as disability: The women on Sprogø and Danish society. Scandinavian Journal of Disability Research, 7
(3-4), 194 - 205
The aim of this article is to show how, through professional diagnoses, social problems declared a specific group of women persona non grata in Danish society. The article is based on data derived from the archives of an institution directed at women of “loose and promiscuous character and low intelligence”: Sprogø in Denmark. The analyses focus on the professional narratives of the interned women, particularly the diagnoses and treatment applied, as they emerge from the archival material. Reading the “Sprogø-girls'” voluminous case sheets it becomes clear that the most marked professional buzzword is “sexuality.” Information was sought on the women's sexual behaviour and, for the staff on Sprogø, there was a special demand to report any signs of “sexual impulses” in the confined women. One recurring aspect was that, sexually, the women were seen as the active and inviting part, and that their behaviour was deemed deviant.
Kleege, G. (2000, June). Helen Keller and "The empire of the normal.” In G. T. Couser (Ed.), The empire of the "normal": A forum on disability and self-representation [Special section]. American Quarterly, 52
“It seems impossible to talk about disability memoir in America without mentioning Helen Keller. Certainly her first book, The Story of My Life
(1903), is the disability autobiography that leaps most readily to mind. Moreover, most of Keller's writing centered on her own life, and during her long career she attempted every genre of life-writing: linear narratives, personal essays, a treatise on her religious belief, and a published journal recording her daily life during a five-month period. But it is her first book that set the standard; The Story of My Life
has the quintessential "triumph over adversity" plot. It chronicles her first twenty-two years, from birth through her first year at Radcliffe College. With the self-effacing modesty characteristic of the genre, Keller is at pains to show that her accomplishments were made possible chiefly through the effort and self-sacrifice of her teacher and companion, Anne Sullivan. She represents Sullivan as her savior who first liberated her from darkness and silence through the gift of language and then championed her cause against individuals and institutions that stood in the way of her educational goals.”
Kleege, G. (2006). Blind rage: Letters to Helen Keller.
Washington, DC: Gallaudet University Press.
Imagine growing up and constantly being compared to someone famous, dead or alive. Someone whose perpetually cheerful, never complaining, triumphing-over-adversity demeanor seemed so high, it appeared impossible to achieve. Now imagine writing a letter to that person telling them how much you hated them because of the constant comparisons. What would you say? How would you feel? Georgina Kleege, author of Blind Rage: Letters to Helen Keller, did just that.
“Dear Helen Keller,” Kleege begins, “Allow me to introduce myself. I am a writer and part-time English professor. I am American, married, middle-aged, middle class. Like you, I am blind, though not deaf. But the most important thing you need to know about me, and the reason for my letter, is that I grew up hating you. Sorry to be so blunt, especially on such short acquaintance, but one of the advantages of writing to a dead person is there’s no need to stand on ceremony. And you should know the truth from the start. I hated you because you were always held up to me as a role model, and one who set such an impossibly high standard of cheerfulness in the face of adversity. ‘Why can’t you be more like Helen Keller?’ people always said to me. Or that’s what it felt like whenever your name came up. ‘Count your blessings,’ they told me. ‘Yes, you’re blind, but poor little Helen Keller was blind and deaf, and no one ever heard her complain.’”
Most people revered Helen Keller as a symbol of human fortitude in the face of adversity. Contrarily, for Georgina Kleege, Keller always represented an example she could not hope to emulate, in turn, causing Kleege to resent her. In Blind Rage, Kleege employs the use of personal letters to delve beneath the surface of this seemingly happy-go-lucky demeanor and, in the end, comes to appreciate the true Helen Keller.
Excerpts are available online at: http://gupress.gallaudet.edu/excerpts/BR.html
Kleege, G. (2008). Blind imagination: Pictures into words. Southwest Review, 93
Kleege details her blindness since childhood, compares the imaginative and visualization processes between blind and non-blind people, and shares her experiences in appreciating representational art. In real life, just as sighted people vary in their skill at translating images into words, blind people vary in the level of their interest in visual matters. It may be that people who lose their sight later in life, and retain visual memories, are more eager for visual details, while people who have been blind since birth or childhood may find this kind of information less necessary or meaningful. Moreover, she stresses that color is central to her visual perception, and that she would be at a loss without it and perhaps make more of it than other viewers do. However, she does not subscribe to the patronizing belief that congenitally blind people cannot conceptualize color.
Kocher, M. (1994). Mothers with disabilities. Sexuality and Disability, 12
This article is a collection of experiences regarding motherhood expressed by six women who have physical disabilities. Topics covered include the difficulties imposed by the disability and the challenges of motherhood. These women's experiences challenge the notion that good mothers must be physically active with her children and instead focuses on the personal relationships between mother and child as the important part of parenting. The author also highlights the necessity and value of a support system (peer supports) in order to network with people in similar situations.
Krieger, S. (2005). Losing my vision. Qualitative Inquiry, 11
This article is about the author’s experience of losing her eyesight, but it is also, more broadly, a reflection on the nature of vision—what it is, how it can be maintained, and how unique inner visions can be valued. When the author began to lose her eyesight, and the outer world became no longer visible to her as it had been before, she began to create a counterposing internal vision so that her sense of her own value would remain intact. She thinks we are all to some extent blind, to some extent sighted, and each of us moves in a world of unique inner vision, an interior landscape that is composed of meanings, of sights and sounds, and feelings deeply held.
Laborit, E. (1998). The cry of the gull.
Washington, DC: Gallaudet University Press. Words have struck me as odd ever since my childhood. The simplest of concepts were even more mysterious. Yesterday, tomorrow, today. My mind worked in the present. What did past and future mean? I took a giant leap forward when, with the help of sign language, I understood that yesterday was behind me and tomorrow was in front of me. That was huge progress. Later, I realized that other words referred to people. Emmanuelle was me. Papa was him. Mama was her. Marie was my sister. I was Emmanuelle, an individual. I had a name, therefore I existed.
Emmanuelle Laborit begins her autobiography The Cry of the Gull
with this simple explanation of the difference sign language made in her life. She learned this at the age of seven, and the second important discovery for this young French girl came soon after, when she realized that being deaf could be a positive part of her identity.
As an adolescent, her experiences paralleled those of many hearing youths growing into adults. She went through the frustration and alienation of most teenagers, but hers came from an inability to reconcile the hearing world and her speech-oriented school with her sensibilities as a young deaf woman. After a lengthy period of trouble in class and at home, she determined to finish school and fight for the rights of other deaf French people. She also took up acting, leading to her ultimate triumph as Sarah in the French production of Children of a Lesser God
. She was the first deaf French actor to win the Moliere Award in the category of best new talent. Her book The Cry of the Gull
is both a revealing and encouraging story for young people everywhere.
LaSpina, N. (1998, October 2). Disabled woman: The forging of a proud identity.
Keynote presentation, Southern Connecticut State University Women's Studies Conference, "Fulfilling Possibilities: Women and Girls with Disabilities," New Haven, CT. Retrieved January 17, 2005 from http://www.disabilityculture.org/course/keynote.htm
This is the text of a keynote presented by Nadina LaSpina, a women with disabilities from Italy, on growing up in the 1950s in Sicily and how, despite the times, she overcome stereotypes and became proud in her identity as a disabled woman.
Lawson, W. (2003, May/June). As a woman with Asperger syndrome. Autism Asperger Publishing Company Newsletter.
Shawnee Mission, KS: Autism Asperger Publishing Company. Retrieved February 24, 2005 from http://www.asperger.net/newsletter_mayjune03lawson.htm
This is a brief article and poem where the author relates her difficulties as person on the autism spectrum, especially in relation to her gender.
Leopold, E. (2006). "My soul is among lions": Katharine Lee Bates's account of the illness and death of Katharine Coman. Legacy, 23
“By the end of the twentieth century, breast cancer narratives constituted a genre of their own. What had begun in the United States in the 1970s with a few scattered memoirs had, by the late 1990s, become a veritable torrent. The popularity of these narratives marked the final—and irreversible—lifting of the veil from a disease that, with few exceptions, had been hidden away since time immemorial. The new genre also delineates significant changes in the course of the disease itself. Earlier diagnosis and treatment now gave women many more years of life. Suddenly transformed into breast cancer "survivors," women were surprised to discover that they had lived to tell their tale and were eager—and extremely grateful—for the opportunity to do so. Fortified by second-wave feminism, they picked up their pens. Casting themselves as reluctant heroines, the writers trace their dangerous passage through a dark thicket of toxic treatments. Ultimately they prevail, regaining a place of relative safety in their former lives….”
“Bates's narrative appears to be the earliest American account of breast cancer conceived explicitly as the history of an illness, written sixty years before the first published accounts began to appear. Bates wrote the memorial in a concentrated burst of a few days, shortly after Coman's death, when the memory and pain of it were both still fresh. For the early twenty-first-century reader, this narrative highlights the radical changes that have taken place over the past century in the way women experience and understand breast cancer. Bates's account also reveals the language, etiquette, and tropes of attachment between two educated women of the early twentieth century and the coterie of women who surrounded and supported them throughout their lives”(pp. 60-61).
Lewis, M. (2003). Life inside: A memoir.
New York: Washington Square Press.
In 1967, three months before her sixteenth birthday, Mindy Lewis was sent to a state psychiatric hospital by court order. She had been skipping school, smoking pot, and listening to too much Dylan. Her mother, at a loss for what else to do, decided that Mindy remain in state custody until she turned eighteen and became a legal, law-abiding, "healthy" adult. Life Inside
is Mindy's story about her coming-of-age during those tumultuous years. In honest, unflinching prose, she paints a richly textured portrait of her stay on a psychiatric ward--the close bonds and rivalries among adolescent patients, the politics and routines of institutional life, the extensive use of medication, and the prevalence of life-altering misdiagnoses. But this memoir also takes readers on a journey of recovery as Lewis describes her emergence into adulthood and her struggle to transcend the stigma of institutionalization. Bracingly told, and often terrifying in its truths, Life Inside
is a life-affirming memoir that informs as it inspires.
LeRoy, B. W., Walsh, P. N., Kulik, N., & Rooney, M. (2004, September). Retreat and resilience: Life experiences of older women with intellectual disabilities. American Journal on Mental Retardation, 109
Older women with intellectual disabilities remain the least studied and understood members of the disability population, and yet they often live well into late adulthood. In this exploratory study we used extensive interviews to examine the demographics, economic and personal safety nets, health, social roles, and well-being of 29 Irish and American older women with intellectual disabilities. Results suggest that these women have very limited resources, social networks, and opportunities. All the women were poor and most lived in group residences, with paid staff as their main allies and careproviders. They reported that their health was good, though it often limited their activities. Despite their societal limitations, these women reported this is the happiest period of their lives.
Lisi, D. (1993). Found voices: Women, disability and cultural transformation. Women & Therapy, 14
The cultural consequences of disability on the lives of six women are explored. The relationship between disability rights and feminism and ethnic identity and the impact of disability on the sense of self and personal goals are considered.
Lonsdale, S. (1990). Women and disability: The experience of physical disability among women
[Women in Society: A Feminist List]. New York: Palgrave Macmillan.
Lonsdale explores how women with physical disabilities experience the double discrimination of being both a woman and a disabled person in society. Placing physical disability in a social and political context rather than an individual one, she uncovers how women with disabilities have been rendered invisible, how they see their self image and body image, how physical disability often leads to dependence, and how women experience a loss of civil liberties and how they face discrimination. Lonsdale also considers the ways in which these situations can change for women, specifically, how policy practices can change so that women can achieve greater independence. Chapters include subjects such as the social context of disability, invisible women, self-image and sexuality, employment, financial consequences of disability, discrimination, and independence.
Löyttyniemi, V. (2005, March). Doctors as wounded storytellers: Embodying the physician and gendering the body. Body & Society, 11
In this article, the focus is on physicians’ own experience of illness or handicap. The researcher asked young physicians to tell their life stories in order to study narrations of career uncertainty. She was surprised by how many of the narrators included in their stories and narrated selves the theme of illness. In this article, the researcher takes her own feeling of wonder as her starting point. She had not expected to hear illness narratives, and now she listens to the thoughts and feelings that her own body and mind readily attach to a physician’s vulnerability. Those thoughts and feelings originate in the (professional) culture that values autonomy more than bodily ties. Wondering, on the other hand, is a feeling that cherishes the difference of the other person, and a feeling that attempts to suspend the customary conceptual flow. From the viewpoint of sexual difference, the difference between the healthy and the ill is analogous to the dichotomy between man and woman, masculine and feminine. In wondering, difference is accentuated while an attempt is made to overcome the dichotomy. The other’s story is not compared to the masculine or feminine norm but the question is, how does this woman or this man tell her or his story so that it is appropriate to her or his gender and the body that is inescapably vulnerable?
Lubchenco, L. O., & Crocker, A. C. (1997). Bus girl: Poems by Gretchen Josephson.
Cambridge, MA: Brookline Books.
This book consists of 25 poems written by Gretchen Josephson, a woman with Down syndrome. She started writing poetry while still in her teens, when she began a job as a bus girl at a restaurant. Her poetry chronicles her life experiences with family, friends, love, and other areas of life. The editors have divided her poetry into sections, which include Bus Girl, Love for Always, Vacations and Travel, Family, Death and Greed, Faith, and Other Poems. Unlike other artistic works such as Musn’t Grumble edited by Lois Keith, Josephson does not write about disability. Instead, she simply creates poetry about her life.
Mairs, N. (1997). Waist-high in the world: A life among the disabled.
Boston: Beacon Press.
Nancy Mairs, a brilliant essayist and poet who has authored six previous books, reflects upon her experiences as a woman with multiple sclerosis in Waist-High In The World
. She discusses such topics as adjusting to change, reconciling body image, experiencing sexuality and pleasure, and seeking equality and justice. She also probes other disability issues, such as assisted suicide and selective abortion, and she revisits an article she once wrote for Glamour
magazine that focused on young people with disabilities.
Manning, M. (1995). Undercurrents: A life beneath the surface.
San Francisco: Harper.
Manning, a clinical psychologist, led a busy life as therapist, mother and psychology professor at George Mason University in Virginia when, in 1990, she sank into crippling depression. Obsessed with images of death and plagued by suicidal thoughts, she vainly sought relief through antidepressants and psychiatric counseling. Simmering with misplaced anger at her husband, Brian, and fearful that their daughter, Keara, could not rely on her, Manning finally agreed to her psychiatrist's recommendation to submit to electroconvulsive therapy (ECT). In this sensitive journal covering the period 1990-1991, she credits electroshock with lifting her out of a life-threatening depression, though she concedes that it caused some memory loss and confusion. She also continues to cope with much smaller depressions and may have to take antidepressants or lithium for the rest of her life. Her edgy self-portrait will probably fuel the debate over a controversial therapy.
March, C. (Ed.). (1998). Knowing ME: Women speak about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.
London: Womens Press, Ltd.
Collection of stories, poems and illustrations from women with CFS.
Mason, M. (2000). Incurably human.
London: Working Press.
Simultaneously personal and philosophical, this book is both a celebration of and call for inclusive communities and schools. Micheline Mason shares some of her experiences growing up and living with a disability in London. She challenges the dominant ideology of the medical model that suggests that she and others with disabilities are broken and need to be fixed, stressing that she is fully human as she is and does not need or desire a cure. The book chronicles her personal journey from experiencing segregation and discrimination to living a full life, fighting prejudice, and working for inclusive societies. She has dedicated the book to Marsha Forest, Jack Pearpoint, Judith Snow, John O’Brien, and Herb Lovett who “flew in as a team, crashed through our British reserve and, in their generosity, gave us the language and the tools of inclusion.” The book is divided into four sections: Exclusion Harms Everyone, The Inclusion Movement, Inclusive Education, Glimpses of a Possible Future.
Mason, M. G. (2001, September). Life prints: A memoir of healing and discovery.
New York: The Feminist Press.
When she is six, Mary Grimley is the nation's first "poster child," dining with President Roosevelt at the Warm Springs rehabilitation center and posing in her wheelchair for publicity shots. But a close look at photos reveals something other than the "cheerful invalid" that the abled expect: mouth closed in a frown, eyes defiant and proud, this bold child is less than impressed with the label of "poor crippled girl."
As a brilliant young scholar in the 1950s and 1960s, Mary Grimley Mason refuses to focus on her disability and instead makes herself privy to a revolution of ideas. At Radcliffe College and in graduate school at the University of Chicago and Harvard, she surrounds herself with writers and thinkers, plunging into the bohemian lifestyle of Cambridge cooperatives and radical intellectualism. But inchoate concepts of "normalcy" soon twist Mason's path, and she finds herself married to another scholar, supporting his studies, keeping house, and raising children. Even during several years in Paris, she is positioned to overhear rather than participate in conversations with scholars and writers such as Louis Massignon. Years of conflict result in a difficult realization: she has laid aside her own dream to become the dream of another-"the perfect wife of a writer," as Frank O'Connor predicted.
Mason has spent her life struggling against prejudice toward disabled people; now she has discovered an even more formidable enemy: the sexism of mentors, friends, family, and even herself. But she will find the courage to contend with both of the forces that seek to define and limit her. After undergoing years of physical therapy and social isolation, after forcing the strictures of disability behind her, she at last accepts her identity as a disabled person, abandoning "that double in my life-that consciousness or voice that tried to pass as able-bodied." At the same time, she moves beyond the limitations society has prescribed for women, embracing feminism-and discovering her life's work. Specializing academically in women's autobiography, Mary Grimley Mason is unusually well-suited to narrate and interpret her own life, taking control of its representation with forthright determination.
Matthews, G. F. (1983). Voices from the shadows: Women with disabilities speak out.
Toronto: The Women’s Press.
This book explores the lives of women with disabilities in Canada and is based on interviews with 45 women with disabilities. The author herself has a physical disability and the book is a mixture of her own autobiography and the interviews. The result is a very readable and interesting account of the lives of women with disabilities, some of whom live in institutions and others who live in the community.
The book is candid in its critique of the medical and rehabilitation professionals, institutions and the attitudinal and physical barriers in society. It explores the feelings of women with disabilities about themselves and their relationships with others. It points out that many doctors and social workers as well as society in general think that women with disabilities are asexual and therefore not in need of information on birth control or what is possible in terms of having children or a sex life. Other issues addressed are employment, education, housing, parenting, accessibility and social and governmental assistance.
The introduction to the book is written by Pat Israel and Cathy McPherson, "two feminists with disabilities" (as they call themselves). They discuss, amongst other things, the relations between the disability rights movement and the women's movement and criticize how un-accessible the women's movement has been for women with disabilities.
Mathews, J. (1992). A mother's touch: The Tiffany Callo story.
New York: Henry Holt & Co.
This is a biography of one woman with cerebral palsy and her struggle to regain custody of her two children. It depicts the bias that society and the justice system have had about persons with disabilities and parenting. The book culminates with the passage of legislation that protects the rights of parents with disabilities.
McBryde Johnson, H. (2005). Too late to die young: Nearly true tales from a life.
New York: Henry Holt and Co.
With a voice as disarmingly bold, funny, and unsentimental as its author, a thoroughly unconventional memoir that shatters the myth of the tragic disabled life
Harriet McBryde Johnson isn't sure, but she thinks one of her earliest memories was learning that she will die. The message came from a maudlin TV commercial for the Muscular Dystrophy Association that featured a boy who looked a lot like her. Then as now, Johnson tended to draw her own conclusions. In secret, she carried the knowledge of her mortality with her and tried to sort out what it meant. By the time she realized she wasn't a dying child, she was living a grown-up life, intensely engaged with people, politics, work, struggle, and community.
Due to a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With help, however, she manages to take on the world. From the streets of Havana, where she covers an international disability rights conference, to the floor of the Democratic National Convention in Chicago, to an auditorium at Princeton, where she defends her right to live against philosopher Peter Singer, she lives a life on her own terms. And along the way, she defies and debunks every popular assumption about disability.
This unconventional memoir opens with a lyrical meditation on death and ends with a surprising sermon on pleasure. In between, we get the tales Johnson most enjoys telling from her own life. This is not a book "about disability" but it will surprise anyone who has ever imagined that life with a severe disability is inherently worse than another kind of life.
A reading guide with potential discussion groups for reading groups and other who want to learn more is also available online at http://www.henryholt.com/readingguides/johnson.htm
McGillin, L., & Kraft-Fine, C. (1998). Not just surviving: Women living a full life with a spinal cord injury
[Video]. Boston: Fanlight Productions.
Only about twenty percent of all people with spinal cord injuries are women, and information about issues specific to them can be hard to come by. Women who are newly injured may feel isolated, and have difficulty obtaining the simplest information about managing day-to-day problems, let alone finding peers to talk with.
This video brings together four women who have been living with SCI for fifteen, twenty, even thirty years. They share insights into topics that include rehabilitation and working with healthcare professionals, appearance and sexuality, menstruation, contraception, pregnancy, parenting, and menopause. Not only do they provide useful information on the day-to-day practicalities of being a woman with a disability, they are also outstanding role models: women leading active, competent, full lives despite spinal cord injury. An important resource for groups focused on disabilities and women's health, this video will also be a valuable tool to help sensitize healthcare students, professionals and rehabilitation staff to issues women confront after becoming disabled.
This video was produced with support from the American Association of Spinal Cord Injury Nurses.
McGraw, L. A., & Walker, A. J. (2007). Meanings of sisterhood and developmental disability: Narratives from white nondisabled sisters. In S. A. Lloyd, A. L. Few, & K. R. Allen (Eds.), Feminist Theory, Methods, and Praxis in Family Studies [Special issue]. Journal of Family Issues, 28
Integrating thought from critical feminist and disability theorists via a strategic social constructionist perspective, the authors analyzed 10 in-depth qualitative interviews to begin to understand the dialogue between (a) how nondisabled sisters understand themselves and their siblings with developmental disabilities and (b) wider systems of power or discourse. The women in this exploratory study described themselves as good sisters by portraying their siblings with disabilities as normal, emphasizing opportunities for moral enhancement, minimizing personal sacrifices, and accepting the gendered nature of family care. This study suggests that nondisabled sisters co-opt ideology that holds women accountable for moral conduct in families to oppose discourse that devalues people with disabilities. This ideology does not, however, help them transcend a gender system that requires mothers and sisters but not fathers and brothers to engage in family care.
Miller, J. K. (Ed.). (2003). Women from another planet? Our lives in the universe of autism.
Bloomington, IN: AuthorHouse.
Mention the word autism and the room suddenly turns silent. It’s the dreaded A word.
People’s attention turns to late night TV public service ads declaring that autistic children are “imprisoned” by autism and need curing at all cost. Recent autobiographies have helped dispel this dire description by suggesting that autism is not a prison and that the door is unlocked and you’re free to come in. Women from Another Planet?
moves beyond these autistic life stories in important ways. It’s a collection of stories and conversations, all of them by women on the autism spectrum who speak candidly, insightfully, and often engagingly about both their gender in terms of their autism and their autism in terms of their gender. It is written not just for parents and professionals, like the other works, but also to those women still searching for ways to understand the unnamed difference they live with, as well as the wider audience of discerning readers. If you enter the unlocked door of these Women from Another Planet? you may end up with a question mark or two about your planet. Is normalcy really all it’s cracked up to be?
Excerpts can be found at the publisher’s web site, http://www.authorhouse.com
and at http://www.womenfromanotherplanet.com/
Miller, L. C., Taylor, J., & Carver, M. H. (2003, June). Voices made flesh: Performing women’s autobiography
[Wisconsin Studies in Autobiography]. Madison: University of Wisconsin Press.
A collection of women’s lives and stories engaging issues of sexual orientation, ethnicity, race, loss of parent, disability, life and death, and war and peace.
Millett, K. (2000). The loony-bin trip.
Chicago: University of Illinois Press. The Loony-Bin Trip
is the powerful, staggeringly personal story of Kate Millett's struggle to regain control of her life after falling under an ascription of manic depression. Compulsively readable, Millett's journey into "that other region" traverses a fearful terrain of self-doubt, futility, and alienation.
Beginning with the summer at her farm in Poughkeepsie when she decides to prove her sanity by going off the lithium prescribed to combat depression, Millett courses through a season of doubt about her own sanity and the loyalty of the people around her. Tormented by the fear that her own mind is "too dangerous" to be left to its own devices, haunted by recollections of two brief, involuntary commitments to mental hospitals, she becomes increasingly terrified of being "captured" again. Millett's nightmares come true when she is forcibly confined to a mental hospital while traveling in Ireland.
"I am telling you what happened to me," Kate Millett says, "in the hope that it may help all those who have been or are about to be in the same boat." Her story illuminates not only the personal but also the social conditions--the "general superstition"--of mental illness. A new preface comments on recent movements for patients' rights and notes touchstone books that have begun to tread the still-taboo ground of psychiatric confinement.
Mintz, S. B. (2007). Unruly bodies: Life writing by women with disabilities.
Chapel Hilll: University of North Carolina Press.
The first critical study of personal narrative by women with disabilities, Unruly Bodies
examines how contemporary writers use life writing to challenge cultural stereotypes about disability, gender, embodiment, and identity. Combining the analyses of disability and feminist theories, Susannah Mintz discusses the work of eight American autobiographers: Nancy Mairs, Lucy Grealy, Georgina Kleege, Connie Panzarino, Eli Clare, Anne Finger, Denise Sherer Jacobson, and May Sarton. Mintz shows that by refusing inspirational rhetoric or triumph-over-adversity narrative patterns, these authors insist on their disabilities as a core--but not diminishing--aspect of identity. They offer candid portrayals of shame and painful medical procedures, struggles for the right to work or to parent, the inventive joys of disabled sex, the support and the hostility of family, and the losses and rewards of aging. Mintz demonstrates how these unconventional stories challenge feminist idealizations of independence and self-control and expand the parameters of what counts as a life worthy of both narration and political activism.
Morris, J. (Ed.). (1989). Able lives: Women's experiences of paralysis.
London: The Women's Press, Ltd.
This is a collection of stories and essays about being female and having a disability. The book grew out of a survey conducted by the Spinal Injuries Association in Great Britain and presents stories by women of all ages describing their lives after becoming disabled. The stories are very frank and straightforward and deal with diverse issues such as self-esteem, sex, incontinence, motherhood, and many more.
Nichols, J. L. (1999). Women living with multiple sclerosis.
New York: Demos Medical Publishing.
Multiple sclerosis (MS) is a chronic disease of the central nervous system with symptoms ranging from mild to severe-including, in some cases, blindness and paralysis. Judith Lynn Nichols was first diagnosed with MS in 1976. Puzzled by the differences between her own experiences with the disease and the conventional medical profile, she eventually co-founded an online group dedicated to supporting each other in the fight against "the Monster."
In this book, members of the group share intimate, emotional accounts of their experiences with MS. Some stories are painful, some are funny, and often they are both. The range of deeply personal concerns includes family reactions to a diagnosis of MS; workplace issues and relationships; sexuality and spirituality; depression and physical pain; loss of bladder and bowel control; and assistive devices and helpful tools. All topics are discussed freely and frankly, in the way closest friends do.
Oliva, G. A. (2004). Alone in the mainstream: A deaf woman remembers public school
[Deaf Lives Vol. 1]. Washington, DC: Gallaudet University Press.
When Gina Oliva first went to school in 1955, she didn’t know that she was “different.” If the kindergarten teacher played a tune on the piano to signal the next exercise, Oliva didn’t react because she couldn’t hear the music. So began her journey as a “solitary,” her term for being the only deaf child in the entire school. Gina felt alone because she couldn’t communicate easily with her classmates, but also because none of them had a hearing loss like hers. It wasn’t until years later at Gallaudet University that she discovered that she wasn’t alone and that her experience was common among mainstreamed deaf students. Alone in the Mainstream recounts Oliva’s story, as well as those of many other solitaries.
In writing this important book, Oliva combined her personal experiences with responses from the Solitary Mainstream Project, a survey that she conducted of deaf and hard of hearing adults who attended public school. Oliva matched her findings with current research on deaf students in public schools and confirmed that hearing teachers are ill-prepared to teach deaf pupils, they don’t know much about hearing loss, and they frequently underestimate deaf children. The collected memories in Alone in the Mainstream
adds emotional weight to the conviction that students need to be able to communicate freely, and they also need peers to know they are not alone.
Olmstead v. L.C. & E.W.: The story of the Olmstead decision and three determined women from Georgia.
(2003). Athens, GA: Institute on Human Development and Disability, University of Georgia.
The complete story of how Lois Curtis and Elaine Wilson, collaborating with attorney Sue Jamieson, fought all the way to the Supreme Court for their right to live in the community.
Olson, D. L. (1991). The lives of women with mental retardation: A multiple minority perspective.
Unpublished Doctoral Dissertation, Syracuse University, Syracuse, NY.
This dissertation explores the lives of women labeled mentally retarded. Olson argues that this label, along with their gender has placed these women in the disadvantageous position of being in a multiple minority group. Through in depth interviews with five women labeled mentally retarded, she seeks to understand how they see themselves as women with mental retardation and how they interact with people who have impact on their lives. The major finding from his work is that women with a label of mental retardation are more prepared to handle disability discrimination than gender discrimination and that the women's movement has not provided them with the awareness of choices it has provided for other women who do not have cognitive disabilities.
Panzarino, C. (1994). The me in the mirror.
Seattle: Seal Press.
Written by writer, disability activist, and artist Connie Panzarino, The Me in the Mirror
is an autobiography of the life of this amazing woman. Born with Spinal Muscular Atrophy Type III, a rare disease, Panzarino tells the story of her life as a disabled woman. She describes her life as one of struggles and triumphs, and tells the stories of her relationships with her family, friends, lovers, her turn to lesbianism, and of her years of pioneering work in the disability rights movement. This book is a must read for anyone interested in understanding the experiences of women with physical disabilities.
This book was adapted into a play (for a review, go to: http://www.theatermirror.com/tmitmls.htm
). And for an excerpt, go to: http://www.disabilityculture.org/course/panzarin.htm
Park, C. C. (2001). Exiting Nirvana: A daughter's life with autism.
Boston, Little, Brown and Company.
Reprising her own now classic work The Siege
, which covered the early years of her autistic daughter's life, Clara Claiborne Park gives us a moving, eloquent portrait of Jessy as an autistic adult—still struggling with language, with hypersensitivities and obsessions, and with the social interactions that most of us take for granted, but at the same time achieving more than her parents could have hoped for, becoming an accomplished artist, and growing into an active member of her family and community.
Peers, J. (2003). Asparagus dreams.
London: Jessica Kingsley.
Expelled from mainstream education and vaguely aware she has something called 'Asparagus' Syndrome, 12-year-old Jessica is sent away to a residential school for young people with autism. Here, at first miserable and misunderstood, she spends the next five years trying to cope with the strict school system--fighting against misguided teacher interventions, dealing with the onset of adolescence and fitting in with the other pupils. Recalling her school years with humour and insight, Jessica takes the reader right inside what it feels like to have AS. Her account will open the eyes of readers to the difficulties, and the rewards, of this condition.
Phenix, L. M. (1994). Cancer in two voices
[Film]. New York: Women Make Movies.
“I’m the first among our friends to have cancer... Many will see their future in the way I handle mine,” Barbara Rosenblum wrote after learning she had advanced breast cancer. For three years Barbara had yet to live, she and her partner, Sandra Butler, documented their lives with courage and frankness. This stunning film provides a unique view into the intimacy of a relationship in a time of crisis. The two women talk about their identity as Jewish women and as lesbians, and they speak openly about the difficult issues each is facing: anger, guilt, feelings about their bodies and changing sexuality, about death and loss. Never once losing either its balance or its fierce emotional integrity, Cancer in Two Voices provides a practical example of dealing with death with sensitivity and a deep commitment to living.
Plach, S. K., Stevens, P. E., & Moss, V. A. (2004). Corporeality: Women’s experiences of a body with rheumatoid arthritis. Clinical Nursing Research, 13
The purpose of this research report is to describe women’s experiences living with rheumatoid arthritis (RA). Twenty women diagnosed with RA participated in semistructured interviews that were analyzed using qualitative content analysis. Findings indicated that how women with RA experience life in their physical bodies is fundamentally important. Corporeality, the name we chose for this phenomenon, is quite literally being one’s body. This experience of the reality of being in or being of a body or corpus was central, not only to participants’ perceptions of well-being but also to the impact rheumatoid arthritis was having on their lives and the actions they took to contend with the illness. The authors identified three themes that described what corporeality was for women with RA: relating to a noncompliant body, body out of synch, and private body made public. These results are discussed in light of other research about embodied experience in persons living with chronic illness.
Plann, S. (2007, Winter). Deaf lives: Nineteenth-century Spanish deaf girls and women. In B. J. Brueggeman (Ed.), Deaf Lives Leading Deaf Lives [Special issue]. Sign Language Studies, 7
“This article is about the lives of nineteenth-century Spanish deaf girls and women. The research I present here is contained in a larger work, a book titled Portraits from the Spanish National Deaf-mute School, to be published by Gallaudet University Press. These ‘‘portraits’’ are in fact biographical essays on nineteenth century deaf people and their educators, all of them connected in one way or another to the Spanish National Deaf School in Madrid” (p. 167).
Prince-Hughes, D. (2004). Songs of the gorilla nation: My journey through autism.
New York: Harmony Books.
This memoir tells how Prince-Hughes learned to manage her Asperger's syndrome by observing and interacting with gorillas. Asperger’s, a "high-functioning" form of autism, regularly goes unrecognized because those affected are often gifted intellectually and learn numerous coping mechanisms.
The author's accounts of her childhood are moving as she describes how she viewed her world and how she tried to deal with it. What makes this book unique is the author's discovery of the gorillas at Seattle's Woodland Park Zoo, and how she learned about personal relationships, the need for companionship, and the need for a group to belong to by watching them. Though she dropped out of school at 16, her focus on the gorillas led to an eventual Ph.D. in anthropology.
Propp, K. (2004, Summer). “Illness memoirs”… from women who’ve survived. Lilith, 29
(2). Life Inside: A Memoir by Mindy Lewis
(Washington Square Press, $24) is Lewis' chronicle of her many years spent overcoming calamity. In 1967, Lewis, age 15, was skipping school, smoking pot, and listening to Dylan. Her father took off for California, and her mother, unable to cope with her moody, rebellious daughter, signed her over to state custody, who then sent her to the New York State Psychiatric Institute. Lewis remained there for over two years. (What is it about Jewish mothers and their artistic daughters?) Most tragic, Lewis was misdiagnosed as having schizophrenia, a not uncommon mistake for the psychiatric profession in the 1960s and 1970s. Lewis' book contains testimony from a therapist who retrospectively diagnoses her as having had only "adolescent rebellion and despair...turbulent emotions...." Indeed, part of her triumph is to visit the ward 33 years after her stay. An adult now, the place no longer intimidates. She can forgive her doctors and is surprised to connect to feelings of intense joy. But that does not reverse the fact that a difficult, even troubled coming-of-age for Lewis was made enormously more complicated by her forced hospitalization. "Ultimately, recovering from incarceration and sorting through its myths has been the greatest education of my life," she says near the end of her moving story.
Putnam, J. (2003, September). Beyond all expectations: The story of Paige Barton.
Orono, ME: The University of Maine Center on Community Inclusion and Disability Studies.
When Paige Barton was born in 1951, she was believed to have Down syndrome, a diagnosis then associated with mental retardation and a shortened life span. Societal stereotypes and beliefs about human potential dictated that from age 14, Paige would spend 15 years in segregated institutions, experiencing the rejection and despair of being removed from her family and community. Beyond All Expectations: The Story of Paige Barton
is the remarkable story of how Paige overcame tremendous societal barriers to gain independence from institutions, obtain her Bachelor's degree, and earn a professional position in state government advocating for people with disabilities. Although most suspected she had Down syndrome, they were wrong, and Paige's true disorder was not discovered until she was 35.
Reeves, J. (1993). Chronic and other films
[Video]. New York: Women Make Movies.
This collection of films from emerging filmmaker Jennifer Reeves includes The Girl's Nervy
, Monsters in the Closet
, and Chronic
. Innovative, perceptive, and powerful, each challenges filmic conventions. The Girl's Nervy
is a cut and paste study of the single frame and the eye's rhythms. Monsters in the Closet
links stories of little girls and girl gangs with tales from the closet of adolescence. Chronic
is an experimental narrative of one young woman living with "so-called" mental illness. Beautiful and skillful, it probes her misogynistic and violent surroundings for the motives behind her compulsive self-mutilation.
Reinikainen, M. (2008). Disablistic practices of womanhood. NORA - Nordic Journal of Feminist and Gender Research, 16
In this article I examine twenty autobiographical texts, which include women's personal experiences of disability and womanhood, and are written by disabled women. Both the texts and the personal experiences are treated as social products which can, through their discourses, offer insight into the socio-cultural practices and norms of disability and womanhood. Employing a Foucauldian discursive approach, the analysis of the texts focuses on references to the discourses and practices of disability and womanhood that can be disablistic, i.e. oppressive, exclusive, and disabling, to disabled women. I argue that more than by the impairment in itself, the experiences of disabled women are shaped by the social and cultural discourses and practices that define disability and womanhood as well as the normative roles, places, and contexts associated with them. The analysis covers issues such as practices of isolation, medical practices, and practices of motherhood, work, and caring. Simultaneous analysis of disability and womanhood exemplifies the way in which disablism operates in a complex interaction with the socio-cultural discourses and practices of womanhood, thus producing gender-differentiated disabling obstacles for disabled women. Some of the traditional normative ideas of disability and womanhood appear as mutually exclusive opposites in the experiences of disabled women. In addition to the need to become aware of the disablistic practices of disability in disabled women's life, I suggest that disability, as a socio-culturally meaningful difference, could function as a significant analytical dimension of feminist research and analysis in identifying disabling and oppressive features in the normative and hegemonic discourses on womanhood and femininity, and in resisting and deconstructing these features in the future.
Reisler, J. (Ed.). (2002). Voices of the oral deaf: Fourteen role models speak out.
Jefferson, NC: McFarland.
This work presents interviews with fourteen oral deaf role models from diverse backgrounds and professions, among them several deaf women. These women and others tell of their experiences and stories, discuss what helped and what hindered them, and offer advice to parents of deaf children.
Roets, G., Reinaart, R., Adams, M., & Van Hove, G. (2008, January). Looking at lived experiences of self-advocacy through gendered eyes: Becoming femme fatale with/out 'learning difficulties.’ Gender and Education, 20
In this article, we attempt to intersect the interdisciplinary characters of disability studies and gender studies, in order to make sense of the activism and lived knowledge of/with two women with the label of 'learning difficulties'. Inspired by Deleuze and Guattari's anti-essentialist notion of devenirs-particules, we find our multiple selves involved in cross-cutting relational storytelling, as such destabilising essentialist, biological determinism towards women with/out the label of 'learning difficulties'. Thus in becoming femme(s) fatale(s), we make the most of a science capable of grasping the continual interplay between agency, structure and context, creating a 'becoming space' where we, as activists with our academic allies, can think and act with one another.
Roets, G., & Van Hove, G. (2003, August). The Story of Belle, Minnie, Louise and the Sovjets: Throwing light on the dark side of an institution. Disability & Society, 18
Our post-modernist story is composed as a narrative analysis of the lived experiences of Belle and Louise--two women with 'learning difficulties'--and our ethnographic field notes while doing narrative inquiry. The narratives mirror a shared construction of meaning and broaden our understanding--throwing light on the dark side of an institution. The narrative analysis points out a clear illustration of power dynamics and discourses in their lives, and shows how the women boast of resilience and offer (hidden) resistance. This paper particularly illuminates the individual, personal and even private celebration of activism and self-empowerment of Belle and Louise. Their vivid stories take us on an enthralling journey, getting to know their world through their eyes.
Rozen, S. (Director), & Kowarsky, Ed. (Producer). (1999). Liebe Perla
[Film]. Israel: Eden Productions.
This powerful documentary highlights the friendship of two women while revisiting the Nazi’s treatment of people with disabilities. The women, a young disability advocate researching the treatment of little people during the Holocaust and an 80-year-old concentration camp survivor, are similar only in that they are both called short-statured. The film is in German and Hebrew with English subtitles. It is a provocative film that is best viewed with time for discussion afterwards.
Rousso, H. (1993). Disabled, female and proud! Ten stories of women with disabilities
(Reprint ed.). New York: Bergin & Garvey.
This book is written by Harilyn Rousso, a woman with a disability, and illustrated with photographs by Flo Fox, a visually-impaired photographer. The book describes the lives of ten contemporary women with disabilities who offer their experiences and ideas about work, relationships, pregnancy, motherhood, life-styles, and how they got to where they are now. Each woman discusses the prejudice, barriers and difficulties she faced and offers advice to the reader about how to overcome these. The jobs these women hold span a variety of fields, some of them work in the creative arts; others in mathematics and science; some work in business; and others in human services. The ten women have various disabilities, and are of diverse age, race, class, and language backgrounds.
The book grew out of the work of Harilyn Rousso, a social worker and therapist, who created a big-sister project for women and girls with disabilities in New York City to address the lack of role models in the media and the community, for young women with disabilities. The book is intended to serve as a much-needed resource to counteract the isolation so many women with disabilities experience in their struggles with work and life. It is also intended to provide positive role models for women and girls with disabilities.
Rousso, H. (2000, Winter). Disabled yet intact: Stories from a life in progress. ducts: A webzine of art, humor and criticism
, No. 6. Retrieved February 28, 2005 from http://www.ducts.org/12_00/toc_frameset.html
Harilyn Rousso recounts some of her life experiences as a woman with cerebral palsy, “Birth Mine,” “Walk Straight and Die,” and “Driving High.”
Sallinen, M., Kukkurainen, M. L., Peltokallio, L. & Mikkelsson, M. (2010, March). Women's narratives on experiences of work ability and functioning in fibromyalgia. Musculoskeletal Care, 8
(1), 18-26. Background:
Fibromyalgia is a significant health problem for women of working age. However, little is known about the long-term effects of fibromyalgia in everyday life or on work ability. Methods:
A narrative interview study was conducted to explore the experiences of work ability and functioning of patients with a long history of fibromyalgia. Twenty women, aged 34-65 years, were purposively chosen for the interviews, to reach a wide range of patients with different social and professional backgrounds. Results:
Four types of experience concerning work ability were identified in the narratives: confusion, coping with fluctuating symptoms, being in between and being over the edge of exhaustion. Severe pain and fatigue symptoms, combined with a demanding life situation and ageing, seemed to lead to substantial decrease in work ability and functioning over the long term. In the narratives, vocational rehabilitation or adjustments to work tasks were rarely seen or were started too late to be effective. Conclusions:
Exploring the life stories of women with fibromyalgia can reveal the perceived causes and consequences of fibromyalgia related to work ability or disability, which can be utilized in developing client-centred rehabilitation approaches and effective interventions to support work ability and avoid premature retirement in fibromyalgia patients.
Sandahl, C. (1999, March). Ahhhh freak out! Metaphors of disability and femaleness in performance. Theatre Topics, 9
“During…performance experiences, I became conscious of the fact that my body itself was a spectacle, a reason for attention, and that I would reap rewards for playing the role of disabled girl-child correctly. Each of these performances cast me in the all-too-familiar and limiting metaphorical roles of disability and femaleness. As a person with a disability, I played the role of poster child and medical object; but I also played the cute, perky, good-girl role, a compliant object of the male gaze. My "girlness" and my "gimpness" were inextricably intertwined, each edifying and naturalizing the other.”
Scior, K. (2003, October). Using discourse analysis to study the experiences of women with learning disabilities. Disability & Society, 18
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.
Schneider, K. (2006). To the left of inspiration: Adventures in living with disabilities.
Indianapolis: Dog Ear Publishing.
When is the last time you've read an honest, funny book about living with disabilities? To the Left of Inspiration: Adventures in Living with Disabilities
is just such a book. Fifty-four million Americans have chronic illnesses or disabilities requiring them to make accommodations in the ways they live their lives. You may have students, customers, and clients with disabilities and want to interact with them knowledgeably and sensitively. Or perhaps you are adjusting to a new illness or disability and have accepted that it's a whole new world you are entering. You'll learn from a woman blind from birth about activities of daily life, like talking to children about disabilities, traveling, going to church, and working. Kathie's life experiences highlight the warmth and humor in everyone's struggles to be humane with each other, whether we are temporarily able-bodied or disabled. Disabilities can be more than adjusted to; they can be mined for pearls and Kathie shares some of hers with you. Kathie is a guide, familiar with the territory, who will walk beside you as you negotiate your new world. You won't learn how to overcome your disability, but you will laugh in recognition and hope as you read To the Left of Inspiration
. Come along with Kathie and her Seeing Eye dog on their adventures; your life will be enriched.
Selak, J. H. (2004/2005). You don’t LOOK sick! Living well with invisible chronic illness.
Binghamton: Haworth Press. You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness
chronicles a patient’s true-life accounts and her physician’s compassionate commentary as they take a journey through the three stages of chronic illness—Getting Sick, Being Sick, and Living Well. This resource helps you focus on building a meaningful life that contains illness as opposed to a life of frustration and fear. Designed for patients in at all stages of the chronic illness journey, this book will also be illuminating for caregivers and loved ones. In You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness
, you will find stories, dialogue, humor, examples, and analogy of the three stages to illustrate a challenging but navigable journey. You will also find suggested reading materials for learning to live well, medical Internet resources, illness-specific Web sites, names and addresses of national associations, and a bibliography of medical books by topic. The short chapters and straightforward language of the book will be helpful for readers who are weary and dispirited.
Severo, R. (1985). Lisa H.: The true story of an extraordinary and courageous woman.
New York: Viking Penguin.
This is a true story of a young woman, Lisa H., who has neurofibromatosis, better known as "Elephant Man's disease." Lisa's disorder attacked her face with unusual fury, literally burying her face with tumors. The book describes Lisa's life till the age of twenty-one, when she underwent a radical plastic surgery to correct her facial deformities. While this is one of a very few descriptions of the lives of people with neurofibromatosis, this book is not the most positive portrayal of people dealing with this disorder. The book is very focused on Lisa's deformities and especially the medical and surgical procedures she went through in the course of her life. The author seems almost obsessed with the last radical surgery Lisa underwent and devotes long sections of the book to a gruesome and detailed description of the bloody eight hour surgery.
The author, Richard Severo, is a reporter who first intended to write only one article about Lisa's surgery, but ended up writing a book about her. Severo undoubtedly intends to be helpful to Lisa and other people with disabilities who confront social discrimination. But he does not manage to go beyond the very stereotyping he is hoping to expose and the book is more like a magazine article which calls for pity rather than respect for Lisa and outrage because of the discrimination she experiences.
Sienkiewicz-Mercer, R., & Kaplan, S. B. (1989). I raise my eyes to say yes.
New York: Avon Books.
This is Ruth Sienkiewicz-Mercer’s powerful account, written with the assistance of Steven Kaplan, of her incarceration in an institution for people labeled mentally retarded. She vividly describes the abuse and neglect she experienced in the institution, and the isolation from family and community. However, the book ends with her description of her successful struggle to gain her freedom, shatter stereotypes, and build a life in the community.
Simon, R. (2003, August). Riding the bus with my sister: A true life journey.
New York: The Penguin Group.
Rachel Simon's sister Beth is a spirited woman who lives intensely and often joyfully. Beth, who has mental retardation, spends her days riding the buses in her Pennsylvania city. The drivers, a lively group, are her mentors; her fellow passengers are her community. One day, Beth asked Rachel to accompany her on the buses for an entire year. This wise, funny, deeply affecting book is the chronicle of that remarkable time. Rachel, a writer and college teacher whose hyperbusy life camouflaged her emotional isolation, had much to learn in her sister's extraordinary world. These are life lessons from which every reader can profit: how to live in the moment, how to pay attention to what really matters, how to change, how to love—and how to slow down and enjoy the ride. Elegantly woven throughout the odyssey are riveting memories of terrifying maternal abandonment, fierce sisterly loyalty, and astonishing forgiveness. Rachel Simon brings to light the almost invisible world of mental retardation, finds unlikely heroes in everyday life, and, without sentimentality, portrays Beth as the endearing, feisty, independent person she is. This heartwarming book about the unbreakable bond between two very different sisters takes the reader on an inspirational journey at once unique and universal.
This story has been produced as a TV movie and is scheduled to broadcast on CBS as a Hallmark Hall of Fame Production, starring Rosie O’Donnell and Andie McDowell in May 2005.
Sinister Wisdom #39: Disability.
(1989-1990). Berkeley, CA: Sinister Wisdom.
This is a 140-page collection of poetry, essays, drawings, pictures, and articles which all focus on disability. Most of the pieces are first-person accounts by lesbians who have disabilities. The women in this issue represent a variety of viewpoints and address a wide range of disability issues from a personal and a political point of view. The women who contributed to this volume have a range of disabilities such as dyslexia, severe allergies, physical disabilities, and blindness, as well as representing a range of racial, cultural, and economic diversity.
Resources of interest to lesbians with disabilities are listed in the back of the collections; these include books, periodicals, organizations, both art organizations and disability organizations.
There are some copies of this back issue still available; for more information go to their web site at: http://www.sinisterwisdom.org/order.html
Smith, S. (2005). Shoes that light up: Women's memoirs of illness and disability. Hecate, 31
Smith presents several memoirs in order to critique some alarmingly prevalent notions about illness, its causes and cures and the ways in which women are dis-empowered by a number of contradictory discourses within medicine and the wider community. Additionally, the discussion will center thematically on the notion of listening and bearing witness and on a critique of some of the damaging beliefs still circulating in the hope that women can avoid participating such received knowledges.
Special feature: Women and disability [Part I]. (2002, November/December). off our backs, 32
Special feature: Women and disability [Part II]. (2003, January/February). off our backs, 33
These issues illustrate that the cross section of oppressions that is created when a woman is black or a lesbian is much more mediated than the cross section of oppressions created when a woman is also disabled. In this two-part series of off our backs, our contributors share personal narratives and commentaries on what their lives as women with disabilities are like. These two issues are also sold as a “Teaching Packet.”
Stamm, T. A., Machold, K. P., Smolen, J., & Prodinger, B. (2010, June). Life stories of people with rheumatoid arthritis who retired early: How gender and other contextual factors shaped their everyday activities, including paid work. Musculoskeletal Care, 8
The aim of the present study was to explore how contextual factors affect the everyday activities of women and men with rheumatoid arthritis (RA), as evident in their life stories. Methods:
Fifteen people with RA, who had retired early due to the disease, were interviewed up to three times, according to a narrative biographic interview style. The life stories of the participants, which were reconstructed from the biographical data and from the transcribed told story were analysed from the perspective of contextual factors, including personal and environmental factors. The rigour and accuracy of the analysis were enhanced by reflexivity and peer-review of the results. Results:
The life stories of the participants in this study reflected how contextual factors (such as gender, the healthcare system, the support of families and social and cultural values) shaped their everyday activities. In a society such as in Austria, which is based on traditional patriarchal values, men were presented with difficulties in developing a non-paid-work-related role. For women, if paid work had to be given up, they were more likely to engage in alternative challenging activities which enabled them to develop reflective skills, which in turn contributed to a positive and enriching perspective on their life stories. Health professionals may thus use some of the women's strategies to help men.Conclusion:
Interventions by health professionals in people with RA may benefit from an approach sensitive to personal and environmental factors.
Stephenson, W. (1983). Roxene.
Calgary, Alberta: Detselig Enterprises.
This is a story about Roxene, a Canadian girl with mental retardation of native Indian origin. It is a true story of Roxene's life which describes her childhood and her teenage years. Most of the book focuses on Roxene's relationship with Margaret vanBiert, who "adopts" Roxene and becomes her friend, advocate, and legal guardian. Roxene is not very good with spoken words and her story is mostly told in vanBiert's words with additions based on the author's observations. We learn about Roxene's childhood with her family and how she, at the age of eight, ended up as a ward of the courts and was moved to a group home far away from her family who lived on an Indian reservation. The description of the friendship between Roxene and Margaret is the best part of this story.
Stechler, A. (2005). The life and times of Frida Kahlo
[Film]. Washington, DC: Daylight Films and WETA Washington in association with Latino Public Broadcasting. The Life and Times of Frida Kahlo
(which premiered on PBS on March 23, 2005) is an intimate biography of a woman who gracefully balanced a private life of illness and pain against a public persona that was flamboyant, irreverent and world-renowned. Kahlo was an eyewitness to a unique pairing of revolution and renaissance that defined the times in which she lived. Through the prism of her life and art, the film explores the ancient culture of Mexico; the Mexican Revolution; the wildfire of communism that burned through Latin America in the 1920s and '30s; the innovators in painting, photography, filmmaking, writing and poetry that congregated in Mexico City; and the revival of interest in popular culture for which Kahlo has become a symbol. For more information, go to the PBS website created for the film: http://www.pbs.org/weta/fridakahlo/about/index.html
Also of interest is the feature film, Frida
, based on Herrera’s biography. For photos of actors from the feature film compared to their real-life counterpoints plus other interesting photos and facts, go to http://www.chasingthefrog.com/reelfaces/frida.php
Stone, K. G. (1997). Awakening to disability: Nothing about us without us.
Volcano, CA: Volcano Press.
This book describes the personal experience of the author, a newspaper columnist and writer. She talks about a broad range of topics relative to attitudes and her disability experience.
The book is divided into four sections. The first part contains factual, educational information; the second addresses issues that many people with disabilities face; the third deals with the author’s own, and ultimately, everyone’s own awakening as to what having a disability can and does mean; and lastly, part four addresses the happiness and contentment that can be found in everyone’s life.
Stone, S. D. (2005, March). Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke. Disability & Rehabilitation, 27
(6), 293-304. Purpose.
To discuss how young, female and invisibly disabled, long-term survivors of hemorrhagic stroke experience the reactions of others as they negotiate the social environment. Method.
Open-ended and in-depth interviews were conducted with 22 women to learn about their post-stroke experiences, and the interviews were analyzed for common issues and themes. Results.
Participants expressed concerns about the reactions of others in the context of discussing popular understandings about who is affected by stroke, and the significance of having invisible disabilities. Participants' experiences were mediated by the cultural belief that stroke is a disease of old age, and by the belief that disabilities worth taking seriously are readily visible. The existence of these beliefs about stroke and disability made it difficult for participants to deal with the reactions of others. Conclusions.
Participants must negotiate their everyday lives within a social context that they are ill-prepared to deal with. Rehabilitation practices need to take this into account and counsel stroke survivors about what to expect and what they need to do for a good QOL in the community.
Taub, D. E., McLorg, P. A., & Fanflik, P. L. (2004, March-April). Stigma management strategies among women with physical disabilities: Contrasting approaches of downplaying or claiming a disability status. Deviant Behavior, 25
The lived experiences of women with physical disabilities have received little research attention. To investigate a variety of social and interpersonal issues, in-depth tape-recorded interviews were conducted with 24 female students with physical disabilities. Findings concerning their experiences as students indicate that these women need to negotiate their disability status with able-bodied others. Respondents employ contrasting stigma management strategies of deflection, normalization, disidentifiers, and advocacy with students, faculty, and campus personnel. Women with physical disabilities either downplay or claim their disability status depending on the type of stigma (discredited or discreditable), the nature of the relationship with the audience (personal or formal), and the perceived reaction of the audience (accepting or questioning the legitimacy of the disability). Implications regarding conflicting presentations of self, divergence of strategies from normative expectations, and lack of group consciousness are discussed.
Thomas, C. (1999). Female forms: Experiencing and understanding disability
[Disability Human Rights and Society]. Berkshire, United Kingdom: Open University Press.
This book explores and develops ideas about disability, engaging with important debates in disability studies about what disability is and how to theorize it. It also examines the interface between disability studies, women's studies and medical sociology, and offers an accessible review of contemporary debates and theoretical approaches.
Thompson, K., & Andrezejewski, J. (1989). Why can’t Sharon Kowalski come home?
Denver, CO: Spinsters Ink.
This book by Karen Thompson, a woman whose lover Sharon Kowalski was injured in a car accident, tells the story of her fight to have authority over Sharon’s care and living situation after her brain injury. Kowalski’s parents, to whom she had not yet come out, refused to acknowledge their relationship and took steps to prevent Thompson from visiting or having any say in their daughter’s care. Their low expectations of their disabled daughter and of the rehabilitation system, combined with their disbelief and homophobia, resulted in their daughter being warehoused without the opportunity to see many of the people she loved. The book was published before Thompson successfully obtained guardianship. A powerful and descriptive narrative.
Torres, S. (Ed.). (1999). Body image thing (that)--Young women speak out
[Series FV No. 8]. Ottawa: Canadian Research Institute for the Advancement of Women (CRIAW).
This book contains 600 essays about body image by young women aged 13-19 from across Canada. The essays cover young women's personal experiences with life, including living with disabilities.
Traustadottir, R., & Johnson, K. (Eds.). (2000). Women with intellectual disabilities: Finding a place in the world.
London: Jessica Kingsley
This book provides the first comprehensive exploration of the issues affecting the lives of women with intellectual disabilities. Women from all over the world, with and without intellectual disabilities, have collaborated to write about their lives, their experiences and their hopes for the future. Different aspects of life--work, family, relationships and community involvement--are discussed. Some of the women have found, or are finding, fulfilling, happy, creative lifestyles. One message which emerging from many of their stories is that their intellectual disability is less of a problem than the social and economic discrimination these women experience. This book thus raises important questions about society's attitudes to women with intellectual disabilities. It is also a place where these women's stories--from the sad or disturbing to the happy, moving or inspirational--can be heard. The book's unique plain English versions of chapters will ensure that it is accessible to other women with intellectual disabilities. It is an important, interesting and readable addition to literature about intellectual disabilities and about women's lives across the world.
Triano, S. (2003). Run for the stronghold: The story of one survivor’s source of self-determination--Self-acceptance and love.
Paper presented 2003 National Conference on Self-Determination for Mental Health Consumers/Survivors, UIC National Research and Training Center on Psychiatric Disability, Chicago, IL. Retrieved March 10, 2005 from http://www.psych.uic.edu/uicnrtc/sdconfdoc04.pdf
Triano, a co-founder of the National Disabled Students Union, writes about her self-discovery as a person with a disability and her experiences on learning about and accepting the principles of self-determination.
Tucker, B. P. (1995). The feel of silence
[Health, Society, and Policy Series]. Philadelphia: Temple University Press.
"I spin a roll of toilet paper—hard, and the paper unwinds to the floor. Does it make a noise as it unfurls? As it hits the floor? When ice cream melts and drips on my sleeve does it make a noise? Or will it only make a noise if it drips onto a hard surface, like the ground, rather than on my soft sleeve? ...They tell me that escaping air makes a sound. How? When?"
With these seemingly simple questions, Bonnie Poitras Tucker introduces us to "the feel of silence." Tucker, profoundly deaf since infancy, became an expert lipreader who never learned sign language and did not meet another deaf person until her mid-thirties. Her compelling story propels the reader through an odyssey of motions—the tension inherent in a battle against the odds.
This intimate memoir is interlaced with moving examples of the ironies and trials of accommodating a hearing world. After spending 17 years as a full-time wife and mother, Tucker embarked on a "second life," divorced, with several children to support. Alternately angry and sad, funny and introspective, Tucker explains how she sometimes "bluffed" instead of announcing her deafness.
Unable to read lips in the dark, candle-lit restaurants, or the turn of dusk left Tucker without a means of communication, virtually paralyzed. Daily frustration resulted from the practicalities of responding to a crying child, airplane announcements, repairmen knocking at the door, a ringing telephone, and following the rapid-fire debates that take place in the classroom and the courtroom.
Opposed to the "Deaf is Dandy" movement, Tucker successfully strategized her way through college, dating, motherhood, and law school, and went on to become a corporate litigator, a law professor, and an expert in several areas of the law, including disability rights.
Excerpts from Chapters 1 and 2 are available online at: http://www.temple.edu/tempress/titles/1220_reg.html
Victorian Women with Disabilities Network. (2000). Oyster grit: A collection of writings by Australian women with disabilities.
Tasmania, Australia: Women With Disabilities Australia (WWDA).
Each and every person has a unique life experience. Here we have a collection of stories of girls and women who deal with disability in extraordinary ways. Courage and determination in the face of seemingly insurmountable odds have resulted in lives encompassing value, creativity success and happiness. Experiences, some spanning many years, are described with laconic humor and Australian understatement. This is our heritage for others to build on.
von Beltz, H. (1996). My soul purpose: Living, learning, and healing.
New York: Random House.
Inspirational and admirable account of how to make the best recovery from a spinal cord injury, if you are young, wealthy, popular, and positive every minute. Heidi von Beltz became a high level quad 16 years ago as a result of a stunt car accident while filming Cannonball Run
. She journeys through trauma, surgeries, hypnosis, denial, visualization, medical research, and lots of champagne and star-studded Hollywood parties, and never stops, even today. An enviable, if not complete recovery, to be regarded with caution if you are living with disability’s responsibilities and challenges and have not found Ms. von Beltz’s magical place where what the mind can conceive, the body can achieve.
Watson-Gegeo, K. (2005, July-August). Journey to the 'new normal' and beyond: reflections on learning in a community of practice. International Journal of Qualitative Studies in Education, 18
Through poetry and strips of narrative, this paper discusses the embodied experience of chemical sensitivity and the anthropologist author's and other patients' journey through altered perception towards knowledge, community and transformation in the context of a medical clinic. The narratives are situated in several strands of relevant theory, including Merleau-Ponty's work on the primacy of perception, feminist perspectives on embodied experience and standpoint epistemology, disability studies, identity creation through narrating the self, and Lave and Wenger's situated learning in a community of practice.
Weimer, J. (1996). Back talk: Teaching lost selves to speak.
Chicago: University of Chicago Press.
Joan Weimer had spent three years researching the life of nineteenth-century novelist Constance Fenimore Woolson for a critical biography when a devastating back injury left her virtually immobile. Pain reshaped her research as she discovered more about Woolson's writing, family, and grief. The imaginative relationship she developed with Woolson—chronicled in this heart-felt book— helped Weimer to escape her physical disability as she wrestled with the question of how to redefine herself.
In this elegant, humorous, and brutally frank memoir, Weimer's discoveries--documentative and imaginative, historical and personal--reveal much about what motivates research, and what motivates healing.
Werner, A., Isaksen, L. W., & Malterud, K. (2004, September). 'I am not the kind of woman who complains of everything': Illness stories on self and shame in women with chronic pain. Social Science & Medicine, 59
In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was conducted with in-depth interviews including a purposeful sampling of 10 women of varying ages and backgrounds with chronic muscular pain. The women described themselves in various ways as 'strong', and expressed their disgust regarding talk of illness of other women with similar pain. The material was interpreted within a feminist frame of reference, inspired by narrative theory and discourse analysis. We read the women's descriptions of their own (positive) strength and the (negative) illness talk of others as a moral plot and argumentation, appealing to a public audience of health personnel, the general public, and the interviewer: As a plot, their stories attempt to cope with psychological and alternative explanations of the causes of their pain. As performance, their stories attempt to cope with the skepticism and distrust they report having been met with. Finally, as arguments, their stories attempt to convince us about the credibility of their pain as real and somatic rather than imagined or psychological. In several ways, the women negotiated a picture of themselves that fits with normative, biomedical expectations of what illness is and how it should be performed or lived out in 'storied form' according to a gender work of credibility as woman and as ill. Thus, their descriptions appear not merely in terms of individual behaviour, but also as organized by medical discourses of gender and diseases. Behind their stories, we hear whispered accounts relating to the medical narrative about hysteria; rejections of the stereotype medical discourse of the crazy, lazy, illness-fixed or weak woman.
Willey, L. H. (1999). Pretending to be normal: Living with Asperger's syndrome.
London: Jessica Kingsley. Pretending to be Normal
tells the story of a woman who, after years of self-doubt and self-denial, learned to embrace her Asperger's syndrome traits with thanksgiving and joy. Chronicling her life from her earliest memories through her life as a university lecturer, writer, wife and mother, Liane Holliday Willey shares, with insight and warmth, the daily struggles and challenges that face many of those who have Asperger's Syndrome. Pretending to be Normal invites its readers to welcome the Asperger community with open acceptance, for it makes it clear that, more often than not, they are capable, viable, interesting and kind people who simply find unique ways to exhibit those qualities.
The last part of the book consists of a series of substantial appendices which provide helpful coping strategies and guidance, based on the author's own experience, for a range of situations. This positive and humane book will provide not only insight into the Asperger world which will prove invaluable for the professionals who work with people with Asperger's Syndrome, but also hope and encouragement for other people with Asperger's Syndrome, their families, and their friends.
Williams, D. (1992). Nobody, nowhere: The extraordinary autobiography of an autistic.
New York: Avon Books.
Donna Williams, who was diagnosed with autism when in her mid 20s, wrote Nobody, Nowhere
in an attempt to understand herself and to explore how she fit into the world around her. She candidly describes the teasing and mistreatment she experienced at the hands of her family and her ability to use role-playing to interact with others. Williams said of her book, “This is a story of two battles, a battle to keep out ‘the world’ and a battle to join it. I have, throughout my private war, been a she, a you, a Donna, and finally, an I.”
Williams, D. (1994). Somebody, somewhere: Breaking free from the world of autism.
New York: Times Books.
This autobiography by Donna Williams poignantly and defiantly illustrates her life and struggle with autism. She powerfully articulates her "awakening to the world" and how she fought for others to do the same. She presents her perspective of autism and reminds readers that it is crucial that they seek to understand her perspective and the perspectives of others with autism rather that imposing their own notions onto someone else. She asserts that she has taken control of her autism, that it does not control her.
Williams, D. (1996). Like colors to the blind.
New York: Times Books. Like Colors To The Blind
is Donna Williams’ third book about her life as a person with autism. When she was diagnosed with autism at the age of 25, she wrote Nobody, Nowhere
as an attempt to explore her experiences as a person with autistic symptoms. In her sequel, Somebody, Somewhere
, she continued to analyze how role-playing and ritualistic behavior helped her to cope with her environment, and how she was able to begin to replace these mechanisms with genuine interactions. This, her latest work, builds upon the last, addressing relationships and emotions. Williams describes her relationship with Ian, who became her best friend and eventually her husband.
Williams, D. (2004). Everyday heaven: Journeys beyond the stereotypes of autism.
London: Jessica Kingsley. Everyday Heaven
is the much-awaited fourth installment in Donna Williams' series of best-selling autobiographies about her life with autism. A humorous, riveting, roller-coaster of a book, Everyday Heaven
covers the monumental nine years from the time Ian left their accidental, 'autistic marriage', to Donna's candid, funny, often bumbling explorations of sexuality and orientation, the challenge of coming to terms with the sudden deaths of those closest to her and finally knowing what life was like without the invisible cage of her 'Exposure Anxiety'. Described as enthralling, deeply moving and gripping, this book will strike a lasting chord not only with autistic readers and professionals seeking to better understand those on the autism spectrum but all of us who simply dream of daring to love deeply, to adventure and to deal triumphantly with the losses along the way.
Williams, S. (2005). Reflections of self.
Kentwood, MI: The Gray Center for Social Learning and Understanding.
This is a powerful and insightful look at life from the perspective of Sondra Williams, an adult with high-functioning autism. Her articles and poetry beautifully illustrate the unique strengths and challenges that she experiences. Topics covered include general information about what it is like to have autism, as well as Sondra’s perspectives on her 18-year marriage and her four children (who have all been diagnosed with ASD), her childhood memories, the therapy that has allowed her to discover and value her real self, and her faith.
Willmuth, M., & Holcomb, L. (1994). Women with disabilities: Found voices.
Binghamton, NY: The Haworth Press, Inc.
Written almost entirely by woman with disabilities, Women with Disabilities: Found Voices
is a deeply personal and compelling discourse of the body, violence, sexuality, and disability. The authors offer a multicultural perspective, which speaks frankly about their experiences. They discuss the abuses they have endured and explain how they have struggled with the issue of being a woman with a body that does not conform to the image that society values.
Women and disability [Special issue]. (1985, Spring). Resources for Feminist Research, 14
(1). Toronto: Ontario Institute for Studies in Education/University of Toronto.
This is a 110-page collection of articles, essays, poetry, book reviews and lists of resources and references around the theme "Women and Disability." Most of the articles are first-person accounts from women who have disabilities and deal with these women's experiences of poverty, discrimination, cultural isolation, self-image, parenting, relationships, powerlessness, and so on. There is no serious attempt in any of these articles to theorize around women with disabilities but the issue contains a wealth of information about where to find resources about women with disabilities. The issue focuses almost solely on women who have physical disabilities. A back order of this issue can be ordered at the journal’s web site: http://www.cam-ac-uk.com
Women with Disabilities Feminist Collective. (n.d.). Women and disability - An issue: A collection of writings by women with disabilities
[Online]. Melbourne, Australia: Author. Retrieved February 24, 2005 from http://www.wwda.org.au/womdis.htm
This is an online collection of writings by women with disabilities produced by the Melbourne based Women with Disabilities Feminist Collective.
Women with Physical Disabilities. (1982). The Disabled Women's Theatre Project
[Film]. New York: Women Make Movies.
Using dance, comedy and drama, this videotape conveys some joyful, absurd and painful moments in the lives of women with disabilities.
Wright, M. H. (1999). Sounds like home: Growing up black and deaf in the south.
Washington, DC: Gallaudet University Press.
Mary Herring Wright’s story adds an important dimension to the current literature in that it is a story by and about an African American deaf child. Her story is unique and historically significant because it provides valuable descriptive information about the faculty and staff of the North Carolina school for Black deaf and blind students at that time from the perspective of a student as well as a student teacher. In addition, this engrossing narrative contains details about the curriculum, which included a week-long Black History celebration where students learned about important Blacks such as Madame Walker, Paul Laurence Dunbar, and George Washington Carver. It also describes the physical facilities as well as the changes in those facilities over the years. In addition, the story occurs over a period of time that covers two major events in American history, the Depression and World War II.
Wright’s account is one of enduring faith, perseverance, and optimism. Her keen observations will serve as a source of inspiration for others who are challenged in their own ways by life’s obstacles.
Wright, M. H. (2005, March). Far from home: Memories of World War II and afterward.
Washington, DC: Gallaudet University Press.
“She’s got no more business there than a pig has with a Bible.” That’s what her father said when Mary Herring announced that she would be moving to Washington, DC, in late 1942. Recently graduated from the North Carolina School for Black Deaf and Blind Students, Mary had been invited to the nation’s capital by a cousin to see a specialist about her hearing loss. Though nothing could be done about her deafness, Mary quickly proved her father wrong by passing the civil service examination with high marks. Far From Home: Memories of World War II
and Afterward, the second installment of her autobiography, describes her life from her move to Washington to the present.
Mary soon became a valued employee for the Navy, maintaining rosters for the many servicemen in war theaters worldwide. Her remarkable gift for detail depicts Washington in meticulous layers, a sleepy Southern town force-grown into a dynamic geopolitical hub. Life as a young woman amid the capital’s Black middle class could be warm and fun, filled with visits from family and friends, and trips home to Iron Mine for tearful, joyous reunions. But the reality of the times never far off. On many an idyllic afternoon, she and her friends found somber peace in Arlington Cemetery, next to the grave of the sole Unknown Soldier at that time. During an evening spent at the U.S.O., one hearing woman asked how people like her could dance, and Mary answered, “With our feet.” She became a pen pal to several young servicemen, but did not want to know why some of them suddenly stopped writing.
Despite the close friends and good job that she had in Washington, the emotional toll caused Mary to return to her family home in Iron Mine, NC. There, she rejoined her family and resumed her country life. She married and raised four daughters, and recounts the joys and sorrows she experienced through the years, particularly the loss of her parents. Her blend of the gradual transformation of Southern rural life with momentous events such as Hurricane Hazel creates an extraordinary narrative history. The constant in Far from Home remains the steady confidence that Mary Herring Wright has in herself, making her new memoir a perfect companion to her first.
Wry Crips. (1994). No apologies
[Film]. Oakland: Disabled Women's Theatre.
This 28-minute video is by Wry Crips Disabled Women's Theatre, which is a comedy troupe of women who are at the forefront of the disability culture movement in the San Francisco Bay area. It is comprised of disabled and able-bodied women of diverse racial, social, and class background. Wry Crips uses humor as a form of resistance. Their performances, comprised of poetry, readings, signing, performing skits, and reading narratives, all resist either medical paradigms, social stereotypes, economic oppression, or individualist assumptions regarding disability issues. The women of Wry Crips embrace disability, seeing beauty and acceptance where able-bodied people only see difference and abnormality. For more information on Wry Crips, contact: Disabled Women's Theatre, P.O. Box 21474, Oakland, CA 94620, Phone (510) 601-5819, E-mail email@example.com