http://www.disabilityhistory.org/women

Acknowledgements

Introductory Essay

Sexuality:

• Introduction
• Web References and Links
• Print Resources
• Phone lines and Organizational Support

Health:

• Introduction
• Web References and Links
• Print Resources
• Phone lines and Organizational Support

Ending Violence

• Introduction
• Web References and Links
• Print Resources
• Phone Lines and Organizational Support

Other Reading we suggest you do

A Beginners Guide to Searching the Internet

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Virtual Organizers: Tanis Doe, Corbett O'Toole with Alison Kafer,
As an introduction to this resource guide, we are pleased to present an article written by Alison Kafer. She is a student at Claremont Graduate University in California who could not attend the Claiming Our Bodies Conference but who helped research, write and edit the resource guide. She presented her article originally at the South Connecticut State University Conference on the topic of Women and Girls with Disabilities. Last years women's conference in Oakland, Changing Borders looked specifically at mentoring and peer support. It focused on networking, recognizing where we could help each other and learning from other women with disabilities. When Alison presented her excellent paper at the South Connecticut event we knew she would provide us with the introduction to this Resource Guide. Although we have edited her article slightly (for length) and have added the voice of "we" instead of only "I" where appropriate, we want her to get full credit for this insightful article. It is a perfect introduction to an event which looks at CLAIMING OUR BODIES.

We chose this paper as the Introduction because Alison bravely (not in the patronizing sense of the word) goes where few others have gone before. She sets out to argue that living our lives, as women with disabilities, in our bodies, are ways of resisting the powers that would make us feel inferior. Although Alison presented this paper at a conference about women with disabilities, she did so without having had the benefit of significant mentoring. Her analysis and the level of her understanding are very impressive for someone new to both the movement of women with disabilities and new to disability herself. We think there are hundreds more Alisons out there, who are meeting their own challenges and succeeding in claiming their bodies. We encourage women who are already active in the equality seeking movements of people with disabilities, Deaf people, women, lesbians and bisexuals, and labor and peace activists to seek out and mentor women who are entering the movements as young, or old, women with disabilities. We want to see a continuation of last year's theme of learning from each other. We have learned a great deal from Alison and hope you can too.

RESISTANT BODIES: Disability as Sites of Resistance (Alison Kafer,1998)

ALISON: Strategies of resistance have been an integral part of feminist theory for a long time. Although such strategies have been configured differently according to the kinds of struggles present at a given time, they have consistently been waged at the site of the body.
Feminist theorists have located resistance in the body in order to challenge injustices at the particular points where they are shown. Since many economic and familiar discourses portray the female body as property owned by men, and legal, medical, and governmental discourses pathologize it as something to be controlled, feminist theorists continue to suggest that the female body itself functions as a potential site of resistance.

TANIS: Because the bodies of women have been subject to violence at the hands of authorities, family members and partners it is particularly important that we take back our bodies and claim them as sites as resistance. It is equally important that we do not allow our differences, physical or mental, to be continually used as rationale for this violence or as rationalization for dismissing our claims of abuse. Having the opportunity to be healthy, and to have control over our reproductive health, as disabled women, is also an important way we defy the medical pathologizing and define our bodies as natural. In this way, our own actions as women with disabilities, and in particular our sexual acts, reconstruct who we are as women in ways that allow us to resist negative forces, and claim our bodies.

ALISON: In recent years feminist theorist like Jana Sawicki, bell hooks, Judith Butler, and Margrit Shidrick suggest that the experiences of marginalized groups, such as women, gays, lesbians, bisexuals, and transgendered peoples, people with physical and mental disabilities, the poor and people of color comprise alternative discourses that challenge the hegemony of dominant ones. Our "subjugated knowledges" or "reverse discourses" operate as forms of resistance because they
positively prove the existence of people, bodies and experiences not found within the histories and narratives created by dominant groups in society. Our lives challenge the naturalness and rightness of the dominant discourses and categories such as race, gender, sex and disability. Resistance, then, can be understood as a contestation of the ways in which discursive practices classify and identify bodies and as a rejection of the dominant interpretation of our bodies. To posit reverse discourses based on these experiences and knowledges is an exercise of power that can result in a profound shift in the way many people regard themselves and their place in society.

TANIS: Deaf people (that's D capitalized on purpose) have done this for many years by identifying their cultural Deafness as a positive trait, one that results in benefits for members. More recently Disabled people are starting to claim Disability as a characteristic that embodies pride and culture, and not shame or disadvantage. As the Disability and Deaf arts grow, we see more evidence of self-expression coming from people who may been seen by the dominant discourses as in need of fixing, broken, less than whole, but who self-identify, and who experience, a positive feeling of pride and belonging. Whether conscious or not, this is a bold political act.


ALISON: Based on the concept of discursive resistance, I suggest that the bodies of women with disabilities serve as sites of resistance to the dominant discourses on the body. Although many women with disabilities participate in disability-related activism, I am primarily concerned with the possibility of a resistance based in the disabled body itself (rather than our activism around access and rights). Expanding on theories established by writers like Judith Butler and Susan Wendell, I argue that bodies with disabilities (singular or plural) offer radical challenges to notions of what bodies are. Our existence as, and in, bodies with disabilities, contests the naturalness of cultural notions of health, normality, control and independence. We embody the possibility of alternative conceptualizations of these categories, as well as alternative ways of understanding bodily identity and value. While my intent is not to romanticize the experience of physical illness and disability, I do believe that they are an effective resource for struggles against patriarchal hegemony.


TANIS: Our event, Claiming Our Bodies, is a gathering of women with diverse bodies, and minds. Our disabilities may be invisible yet profoundly affect the way we interact with our environments. For us, our bodies are not just the physical skin and tissues but the mental capacities, emotional abilities and cognitive actions that our bodies experience daily. Our coming together is another way we struggle against definitions that seek to divide us by categories of disability/ability.

Our claiming of sexuality, health and our struggle to end violence marks our reconceptualization. We are not denying the body - which includes some pain and suffering whether due to violence, emotional trauma, discrimination or disability - but we are remaking our bodies and claiming them as true, as right, and as our own.

ALISON: One of the most pervasive understandings of the body is that it is something that can and should be controlled. In this construction, the body's needs and processes, such as hunger, illness, pain and aging are experiences to be transcended, ignored or prevented altogether. This belief is evident in our cultural obsession with diet and exercise programs, alternative medicines and self-help books. Such practices stem from our belief that illness or disability can be prevented or eliminated if one only tries hard enough. Leaving those who experience disability or chronic illness with a subtle and not so subtle societal guilt of having not done all that was possible. This blame is laid in ways which reinforce the myth that disability is something that can be controlled if one has the right, positive attitude and determination. (and the right resources, which is why telethons are so important to people like Christopher Reeves).

Although we do have control over certain aspects of our bodies, the widespread belief that we can ultimately control our health is misguided. Susan Wendell calls this idea the myth of control describing it as "the belief that it is possible, by means of human actions to have the bodies we want and to prevent illness, disability and death." (1996, pages 93-94). Due to the pervasiveness of the myth of control, people with physical illnesses and disabilities are frequently criticized and marginalized because of our inability to adhere to its requirements - and in fact, it is also the reason for rehabilitation, medicine and all healing arts as professions.

Wendell asserts the most powerful symbolic meaning of disability is the failure to control one's own body. From the spasticity of MS to the need for a respirator to my phantom pains, our experiences reveal that the disabled body is very rarely a perfectly controlled body. More importantly however, they point to the impossibility that "any" body is a controlled body, regardless of disability. From aging to the flu, to acquired disability, non-disabled people are also susceptible to a loss of control. People with disabilities are frightening to able-bodied society because our lack of control is made visible across our flesh, reminding the able-bodied that they too, are susceptible to such chaos.

TANIS: Alison chose to use the word able-bodied, even though we know there are people with disabilities who do have "able bodies" but who have specific learning disabilities, hidden health impairments or mental health related issues. One of the issues we face is the very "invisibility" of disability which is presumed to need to be visible in order to be real. Her example of lack of control being made visible across our flesh could have easily and as accurately been, "lack of control being made invisible by our inability to read or made visible by the power of our emotions." Just as women with physical disabilities are also susceptible to invisible disabilities, women with hidden disabilities often have to fight to convince others of their issues or fight to convince them that the issue is not the problem- that some structural barrier is. As women with purple hair, or no hair, women with tattoos or body piercings, women who are fat or are very tall, we live in ways which visibly and invisibly question what can or should be controlled.

ALISON: The fear of the uncontrolled body (and mind) connects to the cultural devaluation of dependence and overvaluation of independence - at least in North American Anglo-Saxon society. With the protestant ethic of work and struggle, independence is seen as a prerequisite to success, while dependence on others is characterized as weak, dysfunctional and inappropriate. This viewpoint is evident in the protestant saying that "God helps those who help themselves." This is differently spelled out in Catholic beliefs about putting faith in God and in the power of the family to support one another. Workplaces and social service systems select which value base to use and it seems that people who "pull themselves up by their own bootstraps" are valued more than those who depend on extended family or the Church to help them. Our capitalist economy and neo-liberal ideology buttress our feelings of independence by masking the diverse sources of labor behind our products. We see ourselves as independent, even as we depend on workers and products from across the globe. Children of wealthy upper class families are seen as independent as they graduate from high schools, to attend universities supported by their parents, even though throughout childhood they were raised and cared for by staff from Latin American or Caribbean countries.

The notion of absolute independence, however, is fictitious. Debra Connors writes, "independence does not truly reflect anyone's reality. As a species we are emphatically interdependent. Disabled people cannot be independent, not because we are pitiable or helpless but because we are human." (page 97). One of the reasons that people with disabilities are stigmatized is that we belie the notion of a purely independent existence. We make visible the fact that independence is a relative concept that we are all dependent on other people at various points in our lives.

TANIS: Alison is speaking of the physical independence - freedom from help - that many non-disabled people see as the goal of rehabilitation. She is not necessarily referring to the independent living philosophy of self-direction, yet the adage applies here too. No one can have total and complete control over all their experiences, whether that is of personal support, interpreting, technology, housing or family life. This is important to remember as we advocate for independent living and for our rights, that we should no more seek to be "truly independent" than we should seek to be less than fully human. Being dependent for some things, or needing assistance for any specific thing, should not be seen as a weakness neither should it be avoided at all costs.

ALISON: Ultimately, the most important myth that people with disabilities disrupt is the one of ability. From celebrity telethons to freak shows, North American Anglo Saxon culture has pushed disability to the margins of society. It became something that occurred only in morality plays, carnivals and institutions. Not all countries treat disability or people with disabilities in this way, but it is very common to fear disability in infants and to mourn the loss of an expected child if it is born with a disability. Although approximately forty-nine million Americans have some form of disability, our "man made" laws and architecture have created people with disabilities into unseen people in society (Thomson, 1997, page 13). Blindness and crippledness are seen not as experiences that happen to real people, but as metaphors for stupidity, spiritual poverty, and poor judgement. What these perceptions allow our culture to do is distance itself from disability, to see illness and disablement as something Other, foreign or alien.

TANIS: Alison writes from the perspective of "white America" and has read from many authors about the construction of disability from an Anglo perspective. While some of these same constructions exist in other cultures and among people of color, Indigenous peoples have sometimes disavowed these beliefs by welcoming difference and honoring people with disabilities, particularly aging elders, as an important part of the community. De-emphasis of the individual and recentering of the collectivity has changed what disability means in some groups. However, even in new age so-called egalitarian religious and belief communities, there are specific pressures to be cured, to be whole, to heal-thyself, and if not, well you have failed. Some women with chronic illnesses have found even alternative medicines to be oppressive as they see the metaphor of emotional weakness and physical pain to be real and pervasive. While encouraging women to take control over their lives and in effect to claim their bodies, we do not wish to reinforce the belief that total control is possible, feasible or even desirable.

ALISON: In reality, disability happens not only to the "others" but in both the margins and at the center. Whether by age or accident, many people currently living without disabilities will one day be living with them. The existence of non-disabled people is not absolute. Speaking to the erroneousness of the myth of ability, Susan Sontag asserts that

'illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick. Although we all prefer (in the original) to use only the good passport, sooner or later each of us is obliged at least for a spell, to identify ourselves as citizens of that other place." (1993, page 3).

And some of us have become visible citizens of that other place, using our bodies as our passports. People with disabilities are frightening to the non-disabled because our citizenship is made clear: in and with our bodies, we testify to both the existence and proximity of that Otherland.


TANIS: Most of the non-disabled people who are afraid of the Otherland, or the nightside, haven't been there much. Those most afraid include doctors, parents and close friends of people who have visited. Meecha Corbett, a young girl with a disability recognized that some of the "walking people" need support because they are not "members" of our Otherland. My own daughter feels hearing people should get sign language therapy instead of deaf people getting speech therapy. We resist the definition that Otherlandishness is necessarily less preferable. There are members of both lands, or holders of dual citizenship who enter and leave unafraid of the night time. Interpreters, hearing children of Deaf parents, attendants, people in love with people who have disabilities, and even some so called "professionals" have less trepidation about moving between the dark and the light. For those of us who live (and breath) Disability Culture or Deaf Culture, the "nightside" can actually be FUN! Some of us like the Otherland, but it is the dominant perception that this Otherland is less desirable and therefore to be avoided. Our children with disabilities are learning that their lives have value, and that they have something to offer to those not experienced in our ways of being, orientation to Otherland.

ALISON: Thus one of the most effective ways of challenging the representation of the disabled body as the Other is to locate ourselves within it, to make it the location of the Self. The work of authors like Nancy Mairs exemplifies this process of location. In writing about disability as an integral aspect of her life, by claiming it as part of herself, she resists the conception of disability as something to be hidden, ignored, and stigmatized. Mairs consistently and passionately asserts that she is who she is because of her MS In Waist High In the World, Mairs writes:

"Just as demyelinated lesions have spread throughout my central nervous system, their consequences have pervaded every region of my existence. MS is as much the essence of my "I" as my father's death, and my mother's remarriage, my Yankee girlhood, my conversion to Roman Catholicism, my doctorate in English literature. (MS) cannot be stripped away without mutilating the being who bears it."
Instead of struggling to overcome or transcend her disability, she directly and bluntly claims its place in her life. And in so doing, she discovers a strength, a means of resisting the pitying glances she faces: "I am a cripple, I choose this word to name me, people - crippled or not - wince at the word 'cripple' as they do not at 'handicapped' or 'disabled'. Perhaps I want them to wince, I want them to see me as a tough customer. As I cripple, I swagger." (1986, page 9).

Mairs adamantly and passionately refuses to accept the common representation of disability as devalued Other. She admits the vulnerabilities, the "troubles" of her ill and disabled body with unwavering honesty and introspection. In the process she disrupts many accepted discourses on disability and the body. Challenging the negative stereotypes of disability does not always succeed in destabilizing the categories of ability, health, illness and disability. As we know, the disabled body is widely regarded as inferior, asexual, frightening and pathetic. Revealing the ways in which those perceptions, indeed the very categories of ability and disability, are culturally constructed does not always shatter those assumptions.

Though many non-disabled people continue to read the disabled body as a text of broken-ness, pity and despair, I maintain my belief that physical illness (and mental illness) and disability can operate as sites of resistance to the dominant understanding of the body. I believe that while examples of people who resist dominant definitions have experiences which are always subject to reinterpretation, we do have the potential for resistance. My adamance on this point is due to my own experience as a woman with visible disabilities.

Every single time I leave my house, people stare at me. Their eyes linger on my chair, my stumps, my scars. As their eyes take a mental inventory of my missing parts, they seem to be looking for some clue as to what happened to me. Children are usually more honest in their curiosity, following me around as if I was a macabre pied piper, asking me where my legs are and why I don't have feet. Once in a department store, a young girl saw me, screamed in utter terror, and hid behind her mother's legs until I wheeled past. Although these kinds of reactions can be painful, I have recently begun seeing them more positively, by locating within them the proof of my potential resistance. The shock on people's faces suggests that the appearance and functions of my body radically challenge their understandings of corporeality. If I can find a way to utilize that shock to my advantage, I can potentially effect a change in their most fundamental notions of body, ability and identity.

Once again, however, I want to acknowledge the possibility that resistance of the disabled body can be countered or ignored, this is true because we lack the power to enforce our resistance. Although an increase in the number of people with disabilities actively participating in the public sphere (or the Internet perhaps) may effect some changes in the cultural conception of disability, sheer volume alone may not be enough to subvert dominant conception about what we are.

The mere presence of a blind restaurant diner, a wheelchair-using student or a deaf office worker fails to contest the popular conception that disability is a fate worse than death. I do not think that simply increasing the number of disabled people in those locations will alter that pervasive misperception.

This difficulty is due in part to the risks involved in reifying certain physical activities. I do not want to substitute the dominant paradigm with an equally exclusive one in which the only people with disabilities who are valued are those who are interested in and able to participate in physically or artistically demanding activities. Not only the athletes, dancers, artists, comediennes or performers should be valued. What is needed is an environment conducive to dialogue. What is required is a space in which conversations about disability are not shunned as inappropriate or threatening but as a means to greater understanding.

Simply, it becomes much more difficult to position someone as the Other if in conversation, she continues to position herself, as the Self. I am not suggesting that all of the difficulties of living with disability will disappear if we enter into dialogue with the non-disabled. Conversations are always subject to reinterpretation and subversion; not everyone experiences the same dialogue in the same way. What may shatter one person's assumptions may simply bolster another's. Moreover, not all people with disabilities are interested in engaging in mainstream culture (whatever we, as women on the margins, decide mainstream is). Certain segments of the Deaf community, for example, are highly self-sufficient, and have little contact with many aspects of hearing culture as a whole. They may feel no need to engage in dialogue with a culture that systemically ignores or discriminates against them.

TANIS: And still within the larger Deaf world there are people who are bicultural, with dual citizenship in both hearing and Deaf communities, and others who do not want identity or citizenship in the Deaf world but who prefer the hearing world. There are also late deafened adults who grew up in one world and immigrated, at least partially to another, and there are hard of hearing people, who much like some bisexuals, fit into neither category well. People are often telling them to choose - between being hearing or Deaf as if hard of hearing is not an acceptable identity. For women of color, lesbians, for mixed race women and for women with disabilities who have strong religious identities, there is also an expectation that you must select ONE identity, and that this must be presented consistently to the world to remain valid.

This is true too of women with cyclical disabilities who are told to either be OUT about their disabilities all the time, or stop claiming to be disabled some of the time - as if it is not possible to move in and out with fluidity that is bound by context. It is these issues which make disability and living with it "a problem". For some of us, when we get tired of talking about, convincing people, or proving our identities, being around women who share common values, experiences and disabilities is very relaxing. It is rewarding to be able to talk about incontinence ( or to not talk about it) and to not worry about the reaction of others. We all, at some point, have to educate and create more awareness among the not yet disabled population to get our needs met, but it is so nice to be among women who don't question our identities.

ALISON: I focus on inter-ability dialogue because it is the most relevant to my argument. In order to subvert the dominant conception of people with disabilities as Other we are going to have to effect a shift in the consciousness of people in the mainstream. In other words, in order to alleviate the marginalization of disability, we are going to need to influence and dialogue with the people who see us as marginal, who virtually, make us so.

TANIS: It is when we come together as women with disabilities that we feel safest to be ourselves. It is when I am no the only user of a wheelchair, not the only signer or inhaler/medication user that I feel most positive about my disability. It is when my struggle is not about access or about acceptance but about a substantive point of argument . We may still be marginal to some, but when we gather together we are the center, the center is us, and we have strength to collectively begin our discourses. Claiming Our Bodies, like last year's Changing Borders, is a starting place for this dialogue.

ALISON: I do not mean to depict life with a disability as unambiguously easy acceptable or clear. It is consistently relentlessly and thoroughly a complicated life, one in which questions of value, worth, and normalcy are always being reframed, postponed or ignored. Acquired disability is undoubtedly a loss of sorts (even in its framing as acquisition). Not only a loss of ability but also of anonymity, freedom of movement, and simplicity - even, control. But it is also a gain, many gains, more than can be accounted for and more than I have even yet discovered. And those gains are the things that can become evident in an environment of dialogue.

Bibliography

Connors, Debra. *Disability, Sexism, and the Social Order.* With the Power of Each Breath: A Disabled Womens Anthology. Ed. Susan E. Browne, Debra Connors, and Nanci Stern. Pittsburgh: Cleis, 1985. 92-107.

Mairs, Nancy. Plaintext. Tucson: University of Arizona Press, 1986.

Sontag, Susan. Illness as Metaphor. New York: Anchor, 1990.

Thomson, Rosemarie Garland. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press, 1997.

Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge, 1996.

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http://sexuality.miningco.com/library/weekly/aa091597.htm (Found on the internet)

Duffy, Yvonne. All Things Are Possible. A. J. Garvin, 1981.

Fine, M. , &, Asch, A. (1988). Women with Disabilities: Essays in psychology, culture, and politics. Philadelphia: Temple University Press.

http://www.sexualhealth.com
Sexual Health Network homepage; features a link to chatrooms; discusses sex education, provides information, and discusses therapeutic options.

http://www.realtime.net/austinrapecrisis/HTML/psac-lst.htm
a resource list of newsletters, books, and projects about sex, health, and violence.

http://www.stdservices.on.net/std/social_aspects/disability.htm
provides information on sexuality and intellectual disability; originates from Dept. of Human Resources, South Australia.

http://www.powernet.net/~nnasg/book.htm
basically an advertisement for Georgie Maxfields book The Novel Approach to Sexuality and Disability.

http://www.disabilitynet.co.uk/info/sexpersonal/index.html
originates in the UK; features links to some local organizations, but has not been updated recently; provides opportunity to find a pen pal; features link to ICAD.

http://www.ability.ns.ca/v6n1/v6n1p9.html
features essay by Victoria Garner called Equality in the Bedroom: If You Could See with my Eyes; Garner is a 30ish woman who became blind due to diabetes; she tells her own story in this page; this site is part of the AbilityNetwork.

http://thearc.org/faqs/sexlove.html
features a book review of Couples with Intellectual Disabilities Talk About Living and Loving

http://tps.stdorg.wisc.edu/MGLRC/Groups/DykesDisabilitiesStuff.html
home page of the Dykes, Disabilities, and Stuff newsletter; DD&S originates in Madison,Wisconsin; this page does not include excerpts, only information aboutsubscribing to DD&S

http://www.gimpgirl.com
GimpGirl On-line - For young women and girls with disabilities, gay and straight. Includes articles on current issues, crip culture, and email discussion lists.

http://members.tripod.com/~Barbara_Robertson/Women.html
These are social, academic, activist, and just-for-fun on-line resources on women and disability, collected by Barbara Robertson.

http://www.igc.org/pwd/women.htm
From the Institute on Global Communications(IGC) web page - resources for women with disabilities.

http://www.bpacal.com
Berkeley Policy Associates develops publications on issues important to women with disabilities, including caregiver abuse and domestic violence; barriers to alcohol and drug services; including girls with disabilities in youth programs; and reproductive issues for women with disabilities. Check their web site for ordering information.

http://www.wvp.org
Disability Media Project (dmedia.org) and Wide Vision Productions: information on joining the Cal-Wild Email (now at d-wild@egroups.com) list for women with disabilities and their allies.

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HEALTH
This will be a rather personal introduction to the topic of women's health for women with disabilities. It will focus on four issues- fatigue, pain, mental health and interaction with doctors. One reason this is being written is that both the organizers of this conference are dealing with significant health issues and so this piece was written last, and not by the originally intended person. Corbett O'Toole is a tireless activist who works and lives for the movement of women with disabilities. But she is also a mother. And her daughter, Meecha, is undergoing several medical procedures. The support system that Corbett uses to help sustain her has helped but it has brought to the surface the issues of medical interaction between parents, children and physicians. In a separate situation, I have been having medical problems (both bladder and mental health) which have limited my ability to work on the conference. So I told Corbett I would write the introduction but it would be a personal one, rather than academic. I hope some of you can relate to it and that it will be a useful resource to those of you interested in women's health.

a) Fatigue. Sometimes women are diagnosed with Chronic Fatigue Immune Dysfunction, sometimes with Multiple Sclerosis, other women have had strokes. For many reasons fatigue becomes part of life for women. The act of getting up in the morning, bathing, getting breakfast and sometimes not getting breakfast create enough fatigue to return to bed. For some women, the fatigue is unrelenting and overwhelming because it does not allow you to think. Fatigue is also common among post-polio survivors and women with chronic illness like diabetes. Another issue related to fatigue is that is can be a significant side effect from medications which are prescribed for medical conditions. The fatigue however, then prevents the ability to function in ways that the medical condition may not have even prevented. Fatigue is a major factor in the lives of women with disabilities. For mothers with disabilities, it can wreck havoc on the interaction with children and school officials. For women in partnerships- with men or with women- it can cause stress on sexual relationships and on shared chores. Fatigue is a difficult health problem because even rest does not necessarily resolve it. Sometimes eight hours of sleep does not even help. Sometimes three days in bed just makes one start to go crazy. But most women with disabilities cannot afford three days in bed because we have roles as workers, mothers, activists and members of our community. Before I move on to the next topic, of pain, I want to remind women of what I suggested last year at the opening session. We need to rest more. We need to sleep more, and take time to relax in front of the ocean, a TV, the computer or a green plant. We all could benefit from more rest, whether or not fatigue is a major problem in our lives.

b) Pain. Some of the chronic pain that women experience include neck and back pain, repetitive stress pain in arms and hands from overuse, and nerve pain. Rheumatoid Arthritis, Lupus and Spinal Injuries can all result in life long deep and continued pain. Some women have Pelvic Inflammatory Disease, Endometriosis or Interstitial Cystitis, which creates ongoing internal pain. Pain, which is chronic and sometimes unrelenting, does not respond to painkillers the way acute pain does. Some women end up using narcotics and anti-inflammatory medication that have significant side effects. Alternative treatments such as acupuncture, TENS and chiropractic therapies are almost never covered by medical insurance even if they show more positive results than traditional interventions. As someone lucky enough to live in Canada, I am thrilled that many interventions are covered and that relief from pain can be a reality for some women. But in the United States and in most other countries, it is almost impossible to find medically approved and financed relief from chronic pain. Due in part to a fall from my wheelchair and to using a computer too often I developed a pinched nerve, which affected my right hand and shoulder. The pain was almost unbearable and my mood was affected. A depression set in and I sought treatment for that. But the only temporary relief I could get was from deep tissue massage, and then five or six hours of using my wheelchair (manual OR electric) and I was in agony again. Sedatives and painkillers were the only way I could sleep.

I think that women with significant pain, no matter what the etiology, have to cope with stress that is so difficulty to quantify, it is left undiscussed. I am proud to be a woman with a disability and am excited about Disability Culture but I know that I live with pain and that disability in many cases involves pain. We do not need to pretend that we are pain-free. Pain is part of life as much as disability is part of life but we are trained to not complain and not speak of it. After about fifteen visits to the doctor about my pain I stopped complaining. Not because the pain stopped but because I did not get any satisfaction from the treatment and it didn't seem to make a difference what I did. Although, and Corbett will agree, I didn't reduce stress in my life my lifestyle definitely contributes to the pain (using a computer). The ending of this section on pain relates to Corbett's daughter. Corbett has to help her daughter through surgery to ensure that her hips will be successfully placed to prevent pain. This is a difficult process because Corbett experienced surgery as a child and felt it was not done well. Any mother wants her child to be protected from pain, but sometimes it takes pain to reduce pain. The fact that medical intervention was necessary to treat and prevent Meecha's hip problems brings us back to the issue of women as mothers. Women who have to share the pain their children face and have to be there for recovery and complications. I want those women who are participating in this forum to think of Corbett, and of Meecha, at this time and be aware that pain comes in many forms.

c) Mental Health. As you have noticed, this is a personal introduction. My mood problems that started with the pain I had in the fall ended up being worsened by anti-depressants. I want this section to be about our mental health as women and, personally, how we see ourselves as competent women. I have bipolar disorder. I am not public about it usually and I am not really affected by it negatively because I thrive on the highs and deal with depression medically. However, this most recent treatment for depression was with SSRI (a type of anti-depressant, which can trigger mania in bipolar patients). My reaction to this drug was significant. I was manic for almost four months and despite high doses of medication was not able to come down safely. I had to run away- literally, to a place where I could escape my normal responsibilities of mothering my teenage daughter and work. I needed to be in a place where I could sedate myself. Drug myself. I refused to be hospitalized (they don't seem to like it much when you come to them for help but refuse to go to the ward!). I was lucky. I had enough credit on my credit card, and enough friends in Latin America to leave the country and try to heal. But in my healing I also felt tremendous shame and pain. I felt incompetent and inadequate. I felt out of control and I also felt like I was alone. Through the use of the internet I was able to keep in touch with many people during this time and even "outted" myself without really knowing it, on a list serve which is read by many of my peers. This was both difficult to face and a positive move because it brought offers of support. I believe, and if I had a research grant to prove it I bet I could, that many many women suffer mental health problems in silence because of shame. They are afraid to ask for help and afraid of the reaction they would get to explain what their disability or illness is about.

Mental health illness is very stigmatized. Almost every woman I have met has been through at least one clinical depression and none of them were proud or open about their experience. Of the women I know in the psychiatric community, most are only out about their illness because they are active in advocacy and try to help others. Most of the women do not share their experiences, diagnoses, or treatments and maltreatments. Chemical restraints, ECT, inappropriate drugging, inadequate supervision, lack of caring, and outright assault on women who are in psychiatric crisis are all to common. I want women with disabilities- of all types- to be aware that we have to deal with stress, with pain, with fatigue and with all our life roles our mental health is bound to be affected. There should be NO SHAME in having a psychiatric diagnosis, but even without a diagnosis we need to have the ability to ask for help. To ask for crisis support, respite caregivers and counseling. As a woman with multiple disabilities, and as someone with bipolar disorder, I have never felt more helpless or more useless than when I was "psychotic". For this reason I want to offer my thoughts and tell you that I hope all the women who experience psychiatric symptoms, or any mental health issues, ask for and get the help they need. I think the silent epidemic of mental illness among women with disabilities is killing us softly, and fast. It is tied directly to assisted suicide and to the decisions mothers make to abort a fetus with a disability.

Our lives are worth living and we deserve good, positive treatment for very real mental health problems. If we cannot even ask for help we will not start to recover. I am on my way to recovery, but it has not been easy and I think if this conference was not happening, and if there had not been women sending emails to me regularly, I might not have made it. Women are suicidal at higher rates in all classes, races and age groups. We need to talk about psychiatric issues and our mental health.

d) Interaction with Physicians. Meecha is a child who has to deal with specialists manipulating her body to make her "well". Corbett is the mother who has to deal with all these specialists about what is "best" for Meecha and what Corbett is doing right, or wrong and should or shouldn't do. Corbett, and I, have to deal with our own physicians about our disabilities. Women with disabilities who are dealing with illness have to educate physicians constantly that our "disabilities" are NOT the only reasons for seeking health care. We need screening for cancer, we need prevention information, we need reproductive health services and many of us need prescription medication for infections or conditions which flare up on occasion. I am Deaf but have not gone to the doctor for my "deafness" since I was 19. Interacting with Physicians is necessary to get health care but it is also one of the primary reasons to not seek medical attention. It is so hard, to not be believed, to not be listened to, or to be maltreated that we do not go. Women with disabilities might find one or two doctors who they like and eventually trust but generally we have trouble finding even one doctor.

To find an accessible, affordable health service which meets our needs is a long battle. In Canada, in the United States and in most of the underresourced world, health care is a luxury that only a few wealth women can afford. Women with disabilities have turned to each other for support. We use common knowledge, folk medicine, stories, peer support, internet lists, magazines and late night phone calls to help each other. It is often more successful to get information from each other than from our doctors. Interaction with doctors is a significant barrier to being diagnosed, to be treated, and to healing. We need, collectively, to train more doctors, to get more disabled women doctors, and more doctors aware of our needs. To do this requires effort. With our pain, fatigue, mental health issues and all our social roles as mothers, workers, community members, it is sometimes too tiring to make the effort.

I appeal to you, as women with disabilities, to do your part in educating the doctors. Change the system. Make it more accessible, more affordable, and friendlier so that women with disabilities can do to a doctor when they need treatment. I realize that this was not the introduction to the health topic expected from the Claiming Our Bodies conference participants. I realize that I took personal risks in revealing information about myself, and Corbett. I hope my personal thoughts and shared stories will help to encourage women with disabilities to address their health issues. We have pain. We do suffer, and we sometimes suffer unnecessarily because of the barriers. We have fatigue and we have mental illnesses. We are women with disabilities but we are also women with health needs unrelated from our disabilities (and sometimes they are indirectly related through medication or side effects). We need access to health care and that primarily means going through doctors. As a woman with multiple disabilities, and as a friend of Corbett, I want us all to send positive thoughts to all mothers and women with disabilities facing health issues.

Printed Resources

Boston Womens Health Book Collective. Our Bodies, Ourselves for the New Century: A Book by and for Women. Touchstone, 1998.

Carlson, Karen J., Stephanie A. Eisenstat, and Terra Ziporyn. The Harvard Guide to Womens Health. Harvard University Press, 1996.

Slupik, Ramona I. and Kathleen Cahill Allison. The American Medical Association Complete Guide to Womens Health. Random House, 1996.

White, Evelyn C. The Black Womens Health Book: Speaking for Ourselves. Seal Press, 1994.

Lynch, Lee and Akia Woods. Off The Rag: Lesbians Writing on Menopause. New Victoria, 1996.

Stern, Phyllis Noerager. Lesbian Health: What Are the Issues? Taylor and Francis, 1993.

White, Jocelyn C. and Marissa C. Martinez. The Lesbian Health Book: Caring for Ourselves. Seal Press, 1997.

Wilton, Tamsin. Good for You: A Handbook on Lesbian Health and Well-Being Cassell, 1997.

(Coming in Spring 1999: Lesbian Health from National Academy Press)

Guralnik, Jack M., Linda P. Fried, and Eleanor M. Simonsick. The Womens Health and Aging Study: Health and Social Characteristics of Older Women with Disability. DIANE, 1996.

Haseltine, Florence P. Reproductive Issues for People with Disabilities. Paul H. Brooke, 1993.

Krotoski, Danuta M., Margaret A. Nosek, and Margaret A. Turk. Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being. Paul H. Brooke, 1996.

Rogers, Judi and Molleen Matsumura. Mother To Be: A Guide to Pregnancy and Birth for Women with Disabilities. Demos Vermande, 1992.

Internet Resources

http://www.jik.com/ilcs.html
Information on independent living centers

http://www.jik.com/pwdmc1.html
Managed care and people with disabilities

http://www.jik.com/hwawd.html
Health, Wellness and Aging with Disability

http://www.jik.com/resource.html
Cutting Edge Disability Resources

http://www.disserv.stu.umn.edu/disability/General_Medicine_and_Health/index.html
links to variety of health sites.

http://cis.nci.nih.gov/contact/contact.html
National Cancer Institute - Cancer information service

National Consortium of Breast Centers, Inc.
P.O. Box 1334, Warsaw, IN 46581-1334
Voice 219.267.8058 Fax 219.267.8268
wiggins@breastcare.org
http://www.breastcare.org

For information about cancer treatment, screening, prevention, supportive care, or clinical trials, please refer to the Cancer Resources page. Listed below are several categories of Frequently Asked Questions about cancer.

If you cannot find the cancer information you need from the Cancer Resources page and the Frequently Asked Questions, please submit your questions through our Cancer Questions form.

or send an e-mail to info@cdcnp in.org

Back to Table OF Contents

ENDINGVIOLENCE
Ending VIOLENCE

INTRODUCTION
We are women of broken spirits, broken bodies and broken minds. Not so much because of impairment or disability, but as a result of violence. The hard facts are that more than half of us will have some form of violence perpretrated upon us as women with disabilities. A third already experienced abuse as girl children. Our spirits and minds can be affected forever by this type of violation because we can never look at ourselves again an know a life as risk-free. After rape, after physical assault, even after public stripping, there is something that we can never have again even after recovery, therapy and healing. For nearly ten percent of us our disabilities are intimately tied to our experiences of violence because we were shot, shaken, blinded, beaten or psychologically tortured. Our paralysis, our mental illnesses (so labelled by professionals) and our lack of self-esteem are tied to trauma and inability to live again as someone free of violence. Because violence leaves a lasting mark, one that is not erased or dealt with using the American's with Disabilities Act or even the Justice system. The mark of hate, of devaluation and of pity is tangible on all survivors even if we do not show this to the public.

Depression and suicide are very much part of the world of survivors and too many teenagers and adult women die because they cannot live with what they have been through. Emotional and psychological abuse, incest, abuse by doctors or attendants, battering and public humiliation take their toll- in our lives. But we are claiming our bodies. This focus on our bodies and our claiming is not about the violence at all but about ending it. We are saying enough is enough and that women with disabilities will not be victims.

Women who cannot speak or who have been drugged into the world of nonsense, and women who speak and are ignored are going to have a voice. We are going to turn outward not inward, and instead of depression or self-loathing we will yell of anger and refusal to accept the status quo. Doing nothing is not an option. Doing nothing allows the violence to continue and sustains the reasons that allow it.

We are worthy and whole and want to live! Violence takes away our worthiness, makes us broken and even strips up of desire for life. All our mothers, sisters, cousins, friends, lovers, daughters and mentors deserve a life without violence. We can make that happen with an attitude of zero tolerance. Most violence occurs between known partners. This is both a horrible fact and a wonderful opportunity. If most violence happens between strangers it would be difficult to target a campaign to stop it. But most women know the man (or woman) that hurts them. Family members, boyfriends, lovers, teachers, doctors, attendants and people in positions of trust are more likely to be offenders of sexual and physical violence than a hooded man in a dark alley. Rapes still happen in alleys but they most often happen on dates, in homes, in hospitals or in transit. Men, and women, (especially because too often lesbian battering is ignored) need to decide to stop the violence. They need to refuse to hit, hurt, yell or rape and they need to get help.

We need help too- the victims and survivors and the potential victims. We need the protection of the law and access to shelters and hotlines but most of all we need the offenders to stop offending. Talk to people you know about violence. Talk about why stress builds up and why fights begin. Volunteer to work in a shelter or give clothes or furniture to women leaving difficult situations. Never remain silent about suspected abuse. It is hard to admit and it is even harder to approach a loved one and say the words "I think you are being abused" but it is even harder to watch it continue and know you did nothing.

It is OUR business as a society to stop the violence. Children who witness violence are more likely to blame themselves for the violence and experience effects of the trauma through physical symptoms. Learning disabilities and emotional disturbances are common and in fact the child may repeat the violence against other children, against a parent or in their own adulthood against themselves and others. Girls may turn the pain inward and become depressed and anxious as well as suicidal- even when the abuse is not directed at them individually. Boys may turn outward and act agressively, hurting other children and drawing attention to himself. No matter how they respond, it hurts and damages children to witness violence.

Children who are abuse almost always exhibit forms of post-traumatic stress and have four times the likelihood of mental health disorders compared to children without abuse histories. Children grow up without the ability to trust, and without feelings of worth and competence. A disabled girl who is abused has her gender, her disability and her abuse all working to demean her existence and render her helpless. This is not to say that being a woman or having a disability are negative. But the combination of being an abused disabled woman and living in a society which devalues women, disabled people and sustains a culture of violence does result in destructive forces.

How can we stop the violence? In part we need to open our minds and start imagining HOW it can happen and how often it happens to understand it. Patterns of abuse and violence teach us about who is more likely to offend and where but not always why. We must start with private and segregated places. Violence in 80% of cases happens in privacy- without witnesses. This can be a car, a school room, a hospital ward, a backyard, a basement or a bedroom. Any place that isolates a victim with an offender is at risk. One way to prevent SOME but not all violence is to NEVER be alone. This is a scary thought. Women should have the right to spend time alone, as girls and as women, and to feel safe. But as a preventative measure, one way to reduce violence is to use a buddy system and to prevent isolated experiences. Mothers should be with their children in the doctors office, sisters should go with their sisters to the bathroom, women should ride in groups in transit situations and if possible potential abusers should never be left in control of women and girls with disabilities. This means screening among psychiatric workers, day care workers, teachers, drivers and all other specialized service providers. This is an important step because sometimes the very nature of the work "helping the helpless" attracts the type of person prone to abuse of power and trust.

No woman should have to be afraid to be alone. But one way to prevent violence is to prevent opportunity and to prevent isolation. When young girls and women start wanting intimate relationships and need privacy, there needs to be a system set up to get help. It could be cellular phones, panic buttons, double dates, special signals or simply a very strong sense of self to ensure that escape is possible. But all women need to be able to date, make love, have sexual experiences and do this in private - with consent. We cannot be so afraid of violence that we do not risk love and laughter. But we can be careful. Teach yourself and your children and your friends basic self defense techniques and escape mechanisms.

Deaf girls, for example can be given whistles or taught to scream very load and possibly carry a special device setting off a high pitched alarm. There are many personal security options but we need to be able to use them.

Domestic violence, and particular for disabled women violence at the hands of paid or voluntary caregivers can be the hardest kind to stop. If you live with and are dependent on the abuser, or if the other alternatives are not accessible or are worse, these is little hope. We need to create accessible community housing and shelters.Not only transition homes but full time places where women can live safely and be supported. Funding mechanisms need to encourage consumer control of attendants and paid caregivers. Family membrs must be given respite and training and if they are feeling stressed because of caregiving they must receive intervention before violence begins. Family members can be the most important source of support for disabled girls and women but if a family member is the offender it destroys the family potency. It breaks trust and dissolves the wonderful ability of a family to overcome barriers and deal with problems.

Family support is essential and this needs to begin when mothers have babies-single or as married couples. We need to teach our parents how to take care of children and deal with crises when they occur. Abusing or murdering a disabled child or family member can never be tolerated as the consequence of burden.

We must stop the violence, but until such time as we are safe and free of threat, we need support services to survive the violence. We need immediate assistance by phone and in person to give us information and tell us how to escape. We need appropriate and well informed medical care and treatment for any emotional, physical or sexual violence we experienced and we need the right to control our treatment. Violence steals our power and our healing must empower us to take it back. Support groups and shelters must be accessible, aware and welcoming. There may be scars from violence but it is a slap in the face to be told you cost too much as a victim to be served. There is no need for us to feel grateful for access to emergency services, and there is too much wealth in our society to use the excuse of not having enough money. We must make it a priority and get the money to make access a normality, a reality and not an exception.

We must train ourselves, because we know best, and train others, who may be able to help, about the experience of disability and of being a woman. More education and awareness will help others not only to stop violence before it occurs but to recognize it when it happens. We have to stop people from being violated and it can only be done through action. If anger is the only feeling that motivates our action, then at least it has some outlet. The worst that can happen to us is that we die. We kill ourselves or are killed too often and its time for zero tolerance. Its time to end violence in all its forms.

Printed Resources
Berry, Dawn Bradley. The Domestic Violence Sourcebook: Everything You Need to Know. Lowell House, 1998.

Answering Questions About Domestic Violence:

The Health Resource Center on Domestic Violence

1-888-Rx-ABUSE (Toll Free Call)

A network sustained by and about member subscribers working together for everyone everywhere

REFERRAL NOTE: if you need free and immediate assistance, call 1-800-799-SAFE (National Domestic Violence Hotline) or 1-800-656-HOPE (for RAINN - Rape, Abuse and Incest National Network.)

P.O. Box 18749
Denver, CO 80218
Phone: 303-839-1852
Fax: 303-831-9251

Web address: http://www.ncadv.org

VIOLENCE WEBSITES :

http://people.delphi.com/mickjyoung/abuse.html
Abuse Resources - domestic, child, elder, sexual

http://www.actabuse.com/dvindex.html
"Abuse, Counseling, and Treatment, Inc." - a non-profit organization's webpage; provides information on formulating a safety plan and gives background info on domestic abuse

http://www.public.usit.net/hooligan/dv/
a directory of over 20 websites about domestic violence and battery; provides links to shelters, resource centers, and personal webpages of other survivors

http://www.phenomenalwomen.com
this page can link you onto the domestic violence webring, which has 75 sites - most of which are personal pages of survivors, but there are also a few links to state resource centers