claiming our bodies



Produced for the Disabled Women's Conference

May 26 1999

Washington DC

By Tanis Doe, Corbett O'Toole and Alison Kafer


Special thanks to Pat Chadwick of the Disability Social History Project for hosting the website,

This resource kit funded in part by a grant from the National Institute on Disability and Rehabiltiation Research
U.S. Department of Education



Introductory Essay

Resource Materials



Ending Violence

Other Reading we suggest you do

A Beginners Guide to Searching the Internet

Program Evaluation and Comments from Last Year

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only a sample of the wonderful women who helped us!

This is the second year in a row that the Disabled Women's Conference prior to the Society for Disability Studies has been planned entirely using the internet. Three organizers with a great number of allies planned and organized this one day event without ever meeting each other in person. There were no phone calls or faxes- just emails and websites. As organizers we depended on the virtual community of women with disabilities to pass on the word about the event. We want to thank Pat Chadwick and Stephen Dias for hosting the registration page on their site as well as helping to format the promotional material. Cal-Wild and Disability-Research list serves were both used to reach women with disabilities and participants in the SDS conference. and gnarlybone were also contacted for distribution.

One email to Teresa San Austin, a program officer at NIDRR brought in the support of local Planned Parenthood, DC Rape Crisis Center and staff at NIDRR. Special thanks to Stacey Little-Pyfrom, LCSW, MPH
Sursum Corda Outreach Project Coordinator/Health Educator, Planned Parenthood of Metropolitan Washington DC, Inc. She provided printed and alternate format resources as well as pens and pencils for delegates. We will all be safer and more sexual due to their support!
This year the Board of the Society for Disability Studies was particularly cooperative in sharing their resources. By allowing us to hold the event on the day before their event we were able to get use of hotel rooms and share local logistical support.

Another email to Judith Treesberg got us volunteer staff for the registration table and local recruitment of support. Our on-line community was very supportive!

A letter of request for support to Betty Jo Berland, and Kate Seelman of NIDRR brought financial support for scholarships, presenters and resource material. Thanks so much!

Lastly, special thanks to all the women who volunteered to be presenters at our event!


May 25th 1999

8:30 - 9:15

Registration and networking

9:30 - 10:10

Key note and opening plenary

Dr. Carol Gill, University of Illinois at Chicago

10:30 - 11:45

Small Groups (up to 30 women)

Discussions, connections, mentoring and collaboration on:

  • Sexuality with Dr Linda Mona, Dr. Tanis Doe, Sonya Perduta, RN
  • Health with Loretta Vecchiarelli, Judith Rogers, Dr Sandra Werner
  • Ending Violence with Michelle Duprey and Hillary Colby

12 - 1:15

Lunch time round tables based on interest and /

or free time to network and nourish!

1:15 - 2:30

Small Groups (up to 30 women)

Discussions, connections, mentoring and collaboration on:

  • Sexuality with Dr. Linda Mona, Corbett O'Toole, Sonya Perduta, RN
  • Health with Loretta Vecchiarelli, Judith Rogers, Dr Sandra Werner
  • Ending Violence with Tanis Doe, Michelle Duprey and Hillary Colby

2:45 - 3:45

Research and Funding Plenary: Betty Jo Berland and Kate Seelman

4:00 - 4:30

Closing plenary and presentation of Action Plans

We hope to have plenty of time between sessions to travel to the next room, use the bathroom, network or rest. However, we depend on sessions beginning and ending on time. Please self-monitor and facilitate the maximum participation of all women.

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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.

This year, we focus on our bodies and the issues which impact us specifically as women, and as women with disabilities. Alison's article, with our editorialization, will frame the discussion of owning our differences -- physical and otherwise - to stake our claim to our bodies. We celebrate with each other as sisters the bodies we live in-pain, fatigue, confusion and all! We welcome Alison and others like her to the movement and hope that this Resource Guide will lead you to important contacts and materials that will help you to claim your bodies and claim your lives as women with disabilities.

We took a unique approach with Alison's paper. Her original paper was shortened and then Tanis responded to each section. For clarity, we have posited it as a dialogue in two voices: that of the younger, newly disabled Alison, and of the slightly older, long time disabled activist, Tanis.

(Virtual) Organizers, Tanis Doe and Corbett O'Toole and researcher,
writer and editor Alison Kafer
(and their daughters, Ann Marie Doe and Meecha Corbett)

Special thanks to Alison Kafer for letting us edit her article for use in this paper as our introduction. We are very sorry you could not be here to participate physically! We hope to connect with you on line!

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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.


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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The who, what, and how's of disabled persons' sexuality

Linda R. Mona, M.A., Ph.D.


A physically disabled individual engaging in sexual activity has been an image not entertained much by mainstream society. However, if an individual is born with or acquires a physical disability during his/her life span, the issue of sexuality becomes one of the most important factors of existence. How is wanting to feel sexually attractive any different between able bodied and disabled persons? Why should this topic be any more important to disabled persons than able bodied persons? The answers to these questions are really quite simple. Although sexual attractiveness and expression may not be a factor of greater importance to persons with physical disabilities compared to able bodied individuals, it is an altogether different experience. Disabled persons are not simply a different version of able bodied persons. Far from it, they comprise a community of individuals with a unique culture filled with social expectations different from able-bodied individuals. These differences are most notable in societal norms and behavioral expectations, including specific assumptions regarding the sexuality of this group. More clearly, these differences are not based upon differences in being human or possessing human emotions, but lay within the realm of what is deemed sexually desirable.

Disability in general has been viewed by academicians, physicians, and society at large as inherently negative. While at times living with a disability is difficult, socially isolating, and architecturally problematic, the disability status itself holds no value. Specifically, a physical disability is not positive or negative, it is simply a state of being in the world similar to gender or racial/ethnic status. Negative circumstances arise mostly due to the fact that the physical world and social norms were created without persons with disabilities in mind. Thus, considering the fact that it is difficult to live in the given environment and function under social standards that do not include disabled persons, it is not surprising that disabled persons are categorized as being bitter or "mad at the world." Yes, given the fact that the world can appear unfriendly to this community it is no wonder that negative feelings are evoked at times. However, it is not the disability itself that is responsible for the elicitation of these feelings of anger or frustration, it is the surrounding social, environmental, and political world.

Negative representations of disabled persons in the media are rampant in television, films, print material, and radio. For the most part, persons with disabilities are portrayed as individuals who subscribe to the belief of "death before disability." In addition, the sexuality of disabled persons has been shown in one of two manners: either disabled persons are shown to be overly capable lovers focusing all attention onto their partner, not acknowledging their own sexual feelings or desires, or disabled persons are shown as sad bitter individuals reciting the commonly known line "I'm only half a man/woman now that I'm disabled." These images have obviously filtered through to society and have influenced the creation of commonly held views about the ways that disabled people feel about and express their sexuality. While this type of illustration of sexuality and disability in the media has changed in recent years with some writers and directors becoming more well versed with disability-related issues (in addition to more disabled actors and actresses being hired to depict disabled characters), some negative images can still be seen on prime time television and in feature films.

Historical Information

The sexuality of persons with physical disabilities has been a topic explored by both psychological and medical researchers for the past 25 years. However, it is an issue discussed infrequently in daily social conversations, in addition to being often omitted in books and lectures focusing upon human sexuality. Why does this occur? For the most part it is based on the fact that historically people with disabilities have been viewed by medical practitioners and society in general as "freaks," not fitting into the category of human beings. Interestingly enough, a commonly question asked of people with disabilities is, "Can you have sex?" The root of this question lies in this "nonhuman" theory described above. Human beings are born with sexual drives and die with these drives regardless of race/ethnicity, sexual orientation, and disability status. While these other minority groups may be mocked or questioned about sexual styles or expression and specific community sexual practices, this process goes one step further for disabled persons. That is, the original question is actually asking, "are you human enough to have sex?" This is clearly not a question of "how do you do it," but rather a questioning of capabilities to physically execute sexual behavior deemed appropriate by able bodied sexual norms and standards. An alternative explanation of the "can you have sex" question may be that individuals are wondering if persons with disabilities are capable of having penile-vaginal intercourse similar to heterosexual able-bodied individuals. Once again, the question remains, "how really different and weird are disabled people compared to the norm?" Is penile-vaginal intercourse the only form of sexual expression practiced by able-bodied individuals? Well, of course not, able bodied persons engage in a wide range of sexual behaviors. In fact, the same holds true for persons with physical disabilities. However, questions and misinformation surface due to the fact that these topics are not discussed in detail in much of the mainstream literature available on human sexuality. In order to fully explore sexuality and disability-related issues, some basic facts and information must be discussed.

The Physical Disability Factor: What Do They Do and How Do They Do It?

With regards to sexuality, person's with different types of sexuality may experience difficulties with sexual activity more so than others. Two issues surface under this realm of discussion: nature and physical abilities. The nature of the disability refers to the type of disability a persons has which includes mobility impairments, visual impairments, and hearing impairments. To complicate matters further, individuals with these given conditions vary within their own category in terms of personal identity and physical functioning. The second part of the disability factor is that of one's physical abilities to engage in certain sexual behaviors. Depending upon the nature of one's disability, there is a wide range of personal ability to actually, physically, move around. For example, it is often assumed that all persons who use wheelchairs are paralyzed. While this may be true for some of the community, there is also a large proportion of wheelchair users who are not paralyzed. Discussion of factors that affect specific disabilities is warranted in order to fully understand the breadth of issues that may appear with regards to sexuality.

Persons with visual and hearing impairments may experience problems with communication with others, a factor that influences the initial meeting of two persons, in addition to the relay of information about sexual wants and desires. It is often taken for granted that eye contact is usually the first step in establishing contact with a potential dating/sexual partner. Blind, and some visually impaired, individuals do not have this option available. How then does a first encounter play out for these people? Other means of communication are employed such as verbal gesturing, speech, and touching of the hands and arms of the other person. Subsequent initiation of sexual activity may be difficult unless a comfort level of verbal communication has already been established. Similarly, persons who are deaf or hearing impaired may have difficulties with initial communication. A large majority of these individuals use sign language as the primary or sole means of communication. Some persons with hearing impairments are quite proficient in reading lips. However, this means that the person with whom they are speaking must be facing them the entire duration of the conversation. How do these ways of communication influence the sexual lives of these individuals? First of all, sign language is not a language known by much of the hearing world. Usually if a hearing person has a friend, relative, or lover with a hearing impairment than he/she may know sign language. So what are the chances of meeting one of these people in a social situation? Of course there is no stead-fast answer. Due to this communication barrier, initial meetings with hearing persons can be difficult or may in fact be impossible. Dating or participating in sexual activity with others who may have hearing impairments or deafness may at times seem more inviting based upon the ability to have a private conversation. However, if a deaf person chooses to date a hearing person who does not use sign language, then a sign language interpreter would most likely be present. Imagine trying to have a steamy sexual conversation through a third party! Thus, privacy is sacrificed in this process and, as a result, sexual communication may be hampered. None of this, of course, is to say that potential sexual and dating partners cannot learn how to utilize sign language and this does occur often.

Persons with mobility impairments also comprise a varied group of individuals. Some persons use crutches or walkers to ambulate due to muscular, bone, or joint conditions while others use prosthetics due to limb amputations or being born without an arm or leg. Persons who use wheelchairs do so due to paralysis caused by stoke or spinal cord injury, muscular or bone conditions, or limb amputations. In general, individuals who are wheelchair users experience a wide variety of physical agility. Those persons who do not deal with a loss in physical sensation mostly deal with finding comfortable body positions in which to engage in sexual activity. Depending upon the disability status of a disabled persons partner, physical limitations may or may not be that large of a problem. That is, when an able bodied person is involved in sexual activity with a mobility impaired person, he/she may be able to move around or move their partner's body around so that a mutually comfortable position can be obtained for various activities. Whether it be kissing, touching, oral sex, penile-vaginal intercourse, or anal intercourse, individuals can negotiate the most comfortable positions available.

For individuals with complete or total paralysis, a slightly different process may occur during sexual activity. This condition usually arises after a stroke or spinal cord injury. Therefore, a large adjustment is made in terms of the ways that these individuals are expressing themselves sexually. Often times people must relearn how to be sexual by becoming reacquainted with their bodies. This is best accomplished through self-touch in discovering what feels good. With some individuals with spinal cord injuries, depending on the level of injury, the ability to experience a physiological orgasm is no longer possible. This presents a wide array of issues due to the fact that society has historically promoted sex in general as genital and orgasm focused. Persons with spinal cord injuries often speak about how difficult it is to loose the ability to have the sexual release of having a physiological orgasm. Persons say that as they become more familiar with their bodies, they began to notice their increase in level of arousal when different areas of their body are stimulated. Whether it be the neck, ears, arms, nipples, or any area responsive to tactile stimulation, persons with various forms of paralysis report feeling sexually aroused even if a physiological orgasm does not occur. Some persons with paralysis even say that sexual feelings have been moved "into their heads" and that they obtain 'mental orgasms' in the place of physiological orgasms.

While communication may have been seen as more important to those with hearing and visual impairments, persons with mobility impairments deal with a fair share of these concerns as well. The ability to negotiate sexual desires and comfortable positions can be quite difficult. Although it may be better to discuss disability and sexually-related matters prior to engaging in activity, life circumstances do not always occur in this fashion. Therefore, disabled persons will often practice what they will say in a given situation before it actually happens. This provides the person with less anxiety when the actual time is present to engage in sexual activity. Partners of persons with disabilities sometimes feel as if asking questions about potential sexual activity is offensive. However, if a given level of trust and communication has already been established, questions of this nature are usually welcomed by disabled individuals because it creates an open forum in which to discuss these topics. (Found on the internet)


Printed Resources

Adams, J. A., & Weaver, S. J. (1986). Self-esteem and perceived stress in young adolescents with chronic disease: Unexpected findings. Journal of Adolescent Health Care, 7(3), 173-177.

Alexander, C. J. , Sipski, M. , L. , & Findley, T. W. (1993). Sexual activities, desire, and satisfaction in males pre- and post- spinal cord injury. Archives of Sexual Behavior, 22(3), 217-228.

Bergman, S. (1978). Sexual adjustment of spinal cord injured women. Sexuality and Disability, 1(2), 85-92.

Brown, D. E. (1988). Factors affecting psychosexual development of adults with congenital physical disabilities. Physical & Occupational Therapy in Pediatrics, 8(2/3), 43-58.

Bullard, D. & Knight, S. (eds.). (1981). Sexuality and Physical Disability: Personal Perspectives, ST. Louis, MO: C.V. Mosby Co.

Campling, J. (1981). Images of ourselves: Women with disabilities. Boston: Routledge and Kegan Paul.

Charlifue, S. W., Gerhart, K. A., Menter, R. R., Whitnsck, G. G., Manley, M. S. (1992). Sexual issues of women with spinal cord injuries. Paraplegia, 30, 192-199.

Cole, S. S. (1988). Women, sexuality, and disabilities. Women and Therapy, 7(2-3), 277-294.

Cole, T. M. (1975). Sexuality and physical disabilities. Archives of Sexual Behavior, 4(4), 389-403.

DeHaan, C. B. , & Wallander, J. L. (1988). Self-concept, sexual knowledge and attitudes, and parental support in the sexual adjustment of women with early- and late-onset disability. Archives of Sexual Behavior, 17(2), 145-161.

Duchame, S. H. & Gill, K.M . (1997). Sexuality after spinal cord injury: Answers to your questions. Baltimore: Paul H. Brookes Publishing Co

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.

Fitting, M. D., Salisbury, S. Davis, M. H. , & Maydin, D. K. (1988). Self-concept of spinal cord injured women. Archives of Sexual Behavior, 7, 143-156.

Gardos, P. S. & Mona, L. R. (1994). The use of computers and on-line services in conducting sexuality research with people who have physical disabilities. Sexuality and Disability, 12(4), 251-259.

Komisaruk, B. R. & Whipple, B. (1995). The suppression of pain by genital stimulation in females. Annual Review of Sex Research, 6, 151-186.

Krotoski, D. M., Noesek, M. A., & Turk, M. A. (1996). Women with physical disabilities: Achieving and maintaining health and well-being. Baltimore: Paul H. Brookes Publishing Co.

Kroll, Ken and Erica L Klein. Enabling Romance: A Guide to Love, Sex, and
Relationships for the Disabled. 1995.

Linton, S. S. (1990). Sexual satisfaction in males following spinal cord injury as a function of locus of control. Rehabilitation Psychology, 35(1), 19-27.

Mona, L. R., Gardos, P. S., & Brown, R. C. (1994). Sexual self-views of women with disabilities: The relationship among age-of-onset, nature of disability, and sexual self-esteem. Sexuality and Disability, 12(4), 261-277.

O'Toole, C. J., & Bregante, J. L. (1992). Lesbians with disabilities. Journal of Sexuality and Disability, 10(3).

Rousso, H. (1984). Disabled yet intact: Guidelines for work with congenitally disabled youngsters and their parents. Child and Adolescent Social Work, 1(4) 254-269.

Rousso, H. (1982). Special considerations in counseling clients with cerebral palsy. Sexuality and Disability, 5(2), 78-88.

Rousso, H. (1981). Disabled people are sexual too! Exceptional Parent, 11(6), 21-25.

Schover, L. R. & Jensen, S. B. (1988). Sexuality and chronic illness. New York: The Guilford Press.

Shontz, F. C. (1982). Adaption to chronic illness and disability: Handbook of clinical health psychology (pp. 153-172). New York: Plenum.

Sipski, M. L., Alexander, C. J. & Rosen, R. C. (1995). Physiological parameters associated with psychogenic sexual arousal in women with complete spinal cord injuries. Archives of Physical and Medical Rehabilitation, 76, 811-818.

Sipski, M. L. & Alexander, C. J. (1993). Sexual activities, response, and satisfaction in women pre- and post-spinal cord injury. Archives of Physical Medicine and Rehabilitation, 74, 1025-1029.

Sipski, M. L., Komisaruk, B., Whipple, B., Alexander, C. J. (1993). Physiological responses associated with orgasm in the spinal cord injured female. Archives of Physical Medicine and Rehabilitation, 74, 1270.

Task Force on the Concerns of Physically Disabled Women. Toward Intimacy:
Family Planning and Sexuality Concerns of Physically Disabled Women. Human
Sciences Press, 1978.

Thorton, C. E. (1979). Sexuality counseling of women with spinal cord injuries. Sexuality and Disability, 2(4), 267-277.

Waxman, B. F. (1994). Up against Eugenics: Disabled women's challenge to receive reproductive health services. Sexuality and Disability, 12(2), 155-171.

Whipple, B., Gerdes, C. A., & Komisaruk, B. R. (in press). Sexual response to self-stimulation in women with complete spinal cord injury. Journal of Sex Research.

Bibliography by Linda R. Mona, Ph.D., World Institute on Disability Oakland California

(Coming in 1999 Sex and Women with Learning Disabilities by Michelle McCarthy)

Women and Safer Sex

Women are one of the fastest-growing population with HIV, but not much information has been written for or about them. Here are some topics of special concern for women.

Lesbian Safer Sex
Are Lesbians At Risk for Contracting HIV from Each Other? Yes!! There have cases reported since the mid 1980's which indicate that women are transmitting HIV (Human Immunodeficiency Virus) to each other.
Women and HIV/AIDS
Through December 1994, the Centers for Disease Control and Prevention (CDC) received reports of 58,428 cases of acquired immunodeficiency syndrome (AIDS) among adult and adolescent (13 years and older) women in the United States. The proportion of women among cases in adults and adolescents has increased steadily, from 7 percent in 1985 to 18 percent in 1994.
Women and HIV Infection
Women, who were once falsely reassured that they were not at risk for heterosexual transmission of HIV, are now showing the fastest-growing incidence of AIDS in the nation. Among other statistical evidence that AIDS is affecting more women is the fact that the disease is now the No. 4 killer of American women between the ages of 25 and 44. (A series of the VA AIDS Information Newsletter) (Thu Jan 25 01:15:42 1996)
Sexual Health Network homepage; features a link to chatrooms; discusses sex education, provides information, and discusses therapeutic options.
a resource list of newsletters, books, and projects about sex, health, and violence.
provides information on sexuality and intellectual disability; originates from Dept. of Human Resources, South Australia.
basically an advertisement for Georgie Maxfields book The Novel Approach to Sexuality and Disability.
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.
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.
features a book review of Couples with Intellectual Disabilities Talk About Living and Loving
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
GimpGirl On-line - For young women and girls with disabilities, gay and straight. Includes articles on current issues, crip culture, and email discussion lists.
These are social, academic, activist, and just-for-fun on-line resources on women and disability, collected by Barbara Robertson.
From the Institute on Global Communications(IGC) web page - resources for women with disabilities.
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.
Disability Media Project ( and Wide Vision Productions: information on joining the Cal-Wild Email (now at list for women with disabilities and their allies.


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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
Information on independent living centers
Managed care and people with disabilities
Health, Wellness and Aging with Disability
Cutting Edge Disability Resources
links to variety of health sites.
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

To receive a personalized response to your specific questions about cancer, we encourage U.S. residents to call the CIS at 1–800–4–CANCER (1–800–422–6237) Monday through Friday from 9:00 a.m. to 4:30 p.m. to speak with a Cancer Information Specialist. Callers with TTY equipment may call 1–800–332–8615.

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.

Cancer and Its Causes
Screening and Prevention
Symptoms and Diagnosis

Clinical Trials
Community Resources


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.

Reference and Referral Services

Health Information Specialists at the NPIN answer questions, provide referrals, and offer technical assistance. Using the NPIN databases and other CDC resources, this staff helps callers find up-to-date information about organizations that provide HIV/AIDS- , STD- and TB-related services, educational materials, and funding resources.

To speak with a health information specialist, (English and Spanish), Monday-Friday, 9 am to 6 pm, (ET) call:

or Fax to: 1-888-282-7681 Fax 1-301-562-1050 International Fax

or send an e-mail to info@cdcnp

For information on...


AIDS Clinical Trials

1-800-TRIALS A (1-800-874-2572)

AIDS Treatment Information Service

1-800-HIV-0440 (1-800-448-0440)

National Institute on Aging Information Center


Alzheimer's Disease Education


Cancer Information Service

1-800-4-CANCER (1-800-422-6237)
1-800-332-8615 (TTY)

Patient Recruitment and Public Liaison Office


National Institute of Child Health and Human Development


NIH Consensus Program Information Center

1-888-NIH-CONSENSUS (1-888-644-266-7367)

National Diabetes Outreach Program


National Institute on Deafness and Other Communication Disorders Information Clearinghouse

1-800-241-1055 (TTD/TTY)

National Clearinghouse for Alcohol and Drug Information (NCADI)

1-888-NIH-NIDA (1-888-644-6432)
1-888-889-6432 (TTY)

National Institute of Diabetes and Digestive and Kidney Diseases
Bladder Control for Women Campaign


National Institute of Mental Health Anxiety

1-888-8-ANXIETY (1-888-826-9538)

National Institute of Mental Health Depression


National Institute of Mental Health Panic

1-800-64-PANIC (1-800-647-2642)

National Network of Libraries of Medicine


National Institute of Neurological Disorders and Stroke Information Office


National Center for Complementary and Alternative Medicine

1-888-NIH-6226 (1-888-644-6226)

NIH Ovulation Research


Osteoporosis and Related Bone Diseases -
National Resource Center

1-800-624-BONE (1-800-624-2663)

Weight-Control Information Network (WIN)

1-800-WIN-8098 (1-800-946-8098)


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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.

DAWN Canada, (1997) Suicide and Abuse Project Report and Materials, Vancouver, BC DAWN

Merkin, Lewis and Marilyn Smith (1995) A Community Based Model Providing Services for Deaf and Deaf-Blind Victims of Sexual Assault and Domestic Violence :Sexuality and Disability Vol 13. No. 2

Murphy-Milano, Susan. Defending Our Lives: Getting Away From Domestic Violence and Staying Safe. Anchor, 1996.

Nosek M. et al (1996) Abuse Experiences of Women with Disabilities Compared to Women without Disabilities: Fact Sheet" Center for Research on Women with Disabilities, Baylor College of Medicine Houson Texas

Russel, Marta (1995) Piercing the Veil of Silence: Domestic Violence and Disability" New Mobility November

Stimpson, L and MC Best (1991) Courage Above All: Sexual Assault Against Women with Disabilities Toronto DisAbled Women's Network

Sobsey, Dick (1994) The End of Silent Exploitation: Ending the Abuse of People with Disabilities. Paul S Brooks.

Strong, Marlene and Ann Cupolo Freeman (1997) Caregiver Abuse and Domestic Violence in the Lives of Women with Disabilities Meeting the Needs of WOmen with Disabilities a BluePrint for CHange BPA Oakland

Ulicny, G (1991) Consumer Exploitation by Attendants: How often Does it Happen and Can Anything Be Done About It?" Rehabilitation Counseling Bulletin VOl 33. No.S.

Wilson, Karen. (1997) When Violence Begins at Home: A Comprehensive Guide to Understanding and Ending Domestic Abuse. Hunter House.


Rape Abuse and Incest National Network 1800 656 4673 Voice

National Domestic Violence Hotline 1 800 799 7233 Voice and

1800 787 3224 TTY


Answering Questions About Domestic Violence:

The Health Resource Center on Domestic Violence

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

Even though millions of victims of domestic violence turn to the health care system for help every year, most nurses and doctors receive no formal training on domestic violence, and many hospitals have no standard protocols for how to best treat patients who are battered. With domestic violence finally beginning to be recognized as an epidemic in the United States, many health care providers are looking for new and innovative ways to respond to battered patients and to better understand the dynamics of domestic violence.

In order to meet the growing demand for information and training materials for health care providers, the FUND set up a national Health Resource Center on Domestic Violence. By calling the hotline at 1-888-Rx-ABUSE (toll free call), nurses, doctors, researchers and other interested parties can get advice from trained domestic violence specialists, materials and articles for various medical specialties, and training materials and protocols on domestic violence. For example, if your family doctor treats a patient who may be battered, he/she can call the hotline to get information about how to ask questions about domestic violence, articles on the family practice response to domestic violence, training materials for the staff of his/her dentist office, and information about what other members of that profession are doing about domestic violence.

As FUND Executive Director Esta Soler points out in a press release announcing the Health Resource Center: "Whether they know it or not, most health care providers treat battered women every day. But too many health care providers fail to recognize the symptoms because they are not adequately trained to diagnose and treat abuse. This hotline is designed to help improve the health care response to this costly and devastating epidemic."

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


2325 Oak Street, Berkeley, CA 94708

Please make check payable to:
For charitable contribution deductions: SFWC Date/Marital Rape Education Project
For business/research deductions: National Clearinghouse on Marital and Date Rape

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.)

Our mission is to bring about social, legal, political, psychological, economic, and religious change through our vast resource network of information and support, in order to make intimate relationships truly egalitarian.


National Coalition Against Domestic Violence
P.O. Box 18749
Denver, CO 80218
Phone: 303-839-1852
Fax: 303-831-9251
Web address:

If you need immediate assistance, dial 911.

You can also call the National Domestic Violence Hotline at 1-800-799-7233.


Abuse Resources - domestic, child, elder, sexual
"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
a directory of over 20 websites about domestic violence and battery; provides links to shelters, resource centers, and personal webpages of other survivors
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
home page of International Coalition on Abuse and Disability; features way to join ICAD listserv;gives testimonies from Canadian Senate hearings on violence; ICAD focuses primarily on abuse of people with developmental disabilities and/or mental illness.

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 Readings about Women and Disability that we suggest (they can transform your lives!)


Browne, Susan E., Debra Connors, and Nanci Stern, eds. With the Power of Each Breath: A Disabled Womens Anthology. Cleis, 1985.

Deegan, Mary Jo and Nancy A. Brooks. Women and Disability: The Double Handicap.Transaction, 1985.

Driedger, Diane and Susan G. Dueck. Imprinting Our Image: An International Anthology by Women with Disabilities. Gynergy/Ragweed, 1992.

Fine, Michelle and Adrienne Asch. Women with Disabilities: Essays in Psychology, Culture, and Politics. Temple University Press, 1988.

Lonsdale, Susan. Women and Disability: The Experience of Physical Disability Among Women.St. Martins, 1990.

Matthews, Gwyneth. Voices From the Shadows: Women with Disabilities Speak Out. DownThere Press, 1984.

Rousso, Harilyn. Disabled, Female, and Proud! Stories of Ten Women with Disabilities. (out of print)

Saxton, Marsha, ed. With Wings: An Anthology of Literature by and about Women with Disabilities. Feminist Press, 1993.


Abu-Habib, Lina. Gender and Disability: Womens Experiences in the Middle East. Oxfam, 1997.

Corker, Mairian. Deaf and Disabled, or Deafness Disabled? Towards a Human Rights Perspective. Taylor and Francis, 1997.

Davis, Lennard J. The Disability Studies Reader. Routledge, 1997.

Driedger, Diane, Irene Feika, and Eileen Giron Batres. Across Borders: Women with Disabilities Working Together. Gynergy/Ragweed, 1996.

Froschl, Merle, ed. Bridging the Gap: A National Directory of Services for Women and Girls with Disabilities. Educational Equity, 1998.

Ingstad, Benedicte and Susan Reynolds White. Disability and Culture. University of California Press, 1995.

Jacobson, Denise Sherer. The Question of David: A Disabled Mothers Journey Through Adoption, Family, and Life. Creative Arts, 1999.

Keith, Lois, ed. What Happened to You? Writing by Disabled Women. New Press, 1996.

Linton, Simi. Claiming Disability: Knowledge and Identity. New York University Press, 1998.

Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled. Beacon, 1996.

Mitchell, David and Sharon Snyder, eds. The Body and Physical Difference: Discourses of Disability in the Humanities. University of Michigan Press, 1997.

Resources for Rehabilitation. A Womans Guide to Coping with Disability. 2nd ed. 1997.

Russell, Marta. Beyond Ramps: Disability at the End of the Social Contract. Common Courage, 1998.

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

Tremain, Shelley, ed. Pushing the Limits: Disabled Dykes Produce Culture. Womens Press, 1996.

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

Wates, Michele and Rowen Jade, eds. Bigger Than the Sky: Disabled Women on Parenting. Womens Press, 1999

Most of these books are available through or but also ask your library to get them!

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A Beginning Women's Guide to Internet Resources

Never been surfing? Cannot even type? Don't have a computer? Many women, and particularly poor women have been excluded from the new and exciting world of the Internet! What the Internet is, simply, is a connection of thousands of computers to each other through phone lines and cables. The World Wide Web (sometimes known as the world wide wait) WWW, is one of the most common aspects of the Internet and tends to be very interactive. Instead of reading a book or watching television, the WWW allows you to read information and SELECT information and follow up on other interesting things. There is virtually no end to the possibilities. The most commonly used feature of the internet is not the WWW ( even though its VERY popular and fun). The most common use of the Internet is for mail. Like phone messages and regular mail, the Internet allows you to exchange information, words, pictures and ideas with other people. Programs throughout the world which give FREE (yes FREE) access to the internet are often TEXT ONLY. This means that although you have access to sending and receiving email, (FOR FREE) you cannot receive pictures, complicated formatting or attachments. The FREE programs are sometimes called FREENETS or TELECOMMUNITIES. Almost every library in Canada and America has some form of free, public access to email and the Internet.

Why is this important? To access the Internet you usually need a computer, a phone line or cable connection, membership in a service and some literacy on how to use the software. Because of these requirements many disabled women do not even try. They do not have money for a computer, do not know how to access information and might not even know who to send email to! But freenets and public access programs are making it easier for low income families to join the @ generation (pronounced at). If youwant to practice, send me an email and I'll answer The ud944 is my USER ID which was given to me (sometimes you can choose your name if you are using a paid service) the @ symbol tells the computer where to send my mail and victoria tc is the telecommunity I am a member of. Ca at the end stands for Canada. COM at the end is usually a commerical provider like AOL.COM. EDU is an educational institution, usually in the United States, ORG endings are for non-profit organizations.

Email is a way for women to prevent isolation, talk to friends, make new friends, and reconnect with people across the world and the country- at relatively low cost. There are certainly some dangers involved and stories about stalkers and pediophiles but 90% of email is friendly chatter just like phone calls and mail. If you do not give out your email, most times people who do not know you won't send you mail. If by mistake you get on a mailing list or someone randomly reaches you just ask them to stop. Write down their email and contact the police only if it becomes harassing.

If you do have access to the WORLD WIDE WEB ( which is a graphical interface of computers ) you may need special equipment or software to access it. A person with low vision or difficulty reading might use a screen reader- a synthesized voice reads the page aloud. If you have difficulty typing you may be able to dictate words to the computer using your voice. Another possibility is using different input switches to press keys, move the mouse or click buttons. Some people use a stick in their mouth, a head stick or puff and sip device. The World Institute on Disability produced a handbook about making internet technology more accessible for students in K-12 schools, but it is just as valid for adult women. Order a copy of visit the site at

In this Claiming Our Bodies resource material you will find references to OVER 100 links. LINKS are usually underlined in a contrasting colour (BLUE IS THE DEFAULT). A link means that if you SELECT or click on that area it will connect you to that new address (or site). It is easy to get lost trying to follow links and sometimes end up in a dead end. Using buttons or commands to go "BACK" or "FORWARD" you may be able to reduce some frustration. Just like swimming, its wise to not surf alone until you are used to it. There are lots of resources on the Internet for women, for people learning about the World Wide Web and for people who want to add to it. Just like this resource guide is on the web at many other resources are available. You can even put your own web information up if you have use of free space or can pay for a commercial space. Remember the feeling of learning to swim ( if you can swim), or learning to write (if you can write)? It is a powerful and freeing experience to learn how to use the internet. One of the first places I would recommend is a site based on a a magazine for women learning the internet and involved in social change. It is called Womens'pace and can be reached at or send them an email at to get the hard copy.

This includes some publications and organizations that focus on women and disabilities. Some publications are in Spanish. You can do a search on our website by going into the "Search by Health Topics" section on our home page at and use the Key Term: Disabilities

A good source of publications that are in print and online in Spanish, on disabilities is:

National Information Center for Children and Youth with Disabilities, ED P.O. Box 1492

Washington, DC 20013-1492

Phone Number(s): (202) 884-8200, (800) 695-0285 (TTD/Voice)

Fax Number(s): (202) 884-8441

Web Site:

Annotated, frequently-updated listing of more than 400 women- or gender-related email lists. In addition to the main listing, there are currently sixteen topical sub-sections to make it easier to find women-focused lists in the following areas:

Activism Age-Defined Arts & Humanities Business/Finance Education Health International Internet Information Motherhood/Pregnancy Religion/Spirituality Science &Technology Sexuality/Sexual Orientation Social Sciences Sports & Recreation Women of Color Women's Studies

Gender-Related Electronic Forums has won a bunch of awards (she says, blushing modestly). It offers information you simply can't find in any one place elsewhere.

This selective, frequently-updated listing, which earned Argus Clearinghouse's highest rating (5 out of 5), includes annotated links to more than 300 information-rich web sites. In addition to the main listing, there are currently twelve topical sub-sections to make it easier to find women-focused sites in the following areas:

Activism Arts & Humanities Multi-disciplinary Girls & Young Women Sexuality/Sexual Orientation International Internet Information Online Periodicals Religion/Spirituality Science & Technology Health Women of Color

Information primarily about WMST-L, an academic e-mail list for discussion of Women's studies teaching, research, and program administration. The section includes the following:

Links to more than 370 Women's Studies programs, departments, and research centers all over the world. Annotations identify programs offering graduate degrees in Women's Studies.

Internet Resources on Women: Updates Page

Updates site for my book, Internet Resources on Women, though I've tried to make it useful as well for people without the book who want to keep up with new and changed women-related academic resources. Arranged by topic/chapter, with a listing as well of the past month's additions and changes. Chapter topics include E-mail, E-mail Lists (listed by discipline), Other Internet Info Tools, Women-Related Web Resources (listed by discipline), Gaining Internet Access, and For More Information (listed by topic).

Links to a few selected websites offering information about financial aid for women and internships and job opportunities in Women's studies.

If you don't find what you're looking for among the resources on the UMBC Women's Studies web site, or you'd just like some different perspectives on what's out there, you might take a look at UMBC's rather selective listing of other comprehensive women-related sites

It includes such excellent sites as

The Feminist Majority Online

The University of Wisconsin System Women's Studies Librarian's Office

The Women's Studies Archive on InforM

The Association of College and Research Libraries' WSSLINKS and several others, along with two very useful women-focused search engines,


and WWWomen

What? Women-focused search engines? Why didn't I mention them sooner, you ask? One reason, of course, is that I wanted to call attention to the outrageous results a query about women's resources is likely to produce on such well-known search engines as AltaVista and HotBot. Also, for some things, the women-focused engines may not be as useful as the UMBC Women's Studies site.

For example, if you're looking for women-related email lists and you search on the keywords "email lists" in Femina, you'll get a few individual lists and lots of irrelevant hits. In WWWomen, your search will produce very few hits. Neither engine will include Gender- Related Electronic Forums among its hits, even though both include it in their database (and, in fact, WWWomen highly recommends it elsewhere on their site). But both Femina and WWWomen apparently assign sites a very limited set of keywords; this can turn your search into a frustrating guessing game.
Yahoo is an index of categories and web sites using key words. You may also want to try which specifically searches women's sites and eliminates some of the uninteresting searchresults that come from too broad a search.

DisAbled Womens Networks Disability Awareness Webring homepage; gives info about how to add own page to the ring; features 162 links, mostly personal pages of other people with disabilities."
features links for specific disabilities from A to Z.

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The folllowing resources are all funded by the US Department of Education National Institute on Disability and Rehabilitation Resource. They were all found on the web-site for Dissemination of information and are hotlinks as well as phone accessible.


National Resource Center for Parents with Disabilities
Through the Looking Glass
2198 Sixth Street, Suite 100
Berkeley, CA 94710-2204
(800) 644-2666 (national) or (510) 848-1112 (Bay Area)

Reducing Risk Factors for Abuse Among Low-Income Minority Women with Disabilities
Baylor College of Medicine
Center for Research on Women with Disabilities
3440-B Richmond
Houston, TX 77046
(713) 960-0505

Missouri Arthritis Rehabilitation Research and Training Center (MARRTC)
University of Missouri-Columbia
130 AP Green, DC330.00
One Hospital Drive
Columbia, MO 65212
(573) 884-1499

MRI/Penn Research and Training Center on Vocational Rehabilitation and Mental Illness
Matrix Research Institute
6008 Wayne Avenue Philadelphia, PA 19144
(215) 438-8200

Multiple Sclerosis Research and Training Center NEW! 2/9/98
University of Washington
Department of Rehabilitation Medicine
Box 356490
Seattle, WA 98195-6490
(206) 543-7272

Rehabilitation Research and Training Center on Drugs and Disability
Wright State University
School of Medicine
Substance Abuse Resources and Disability Issues (SARDI)
PO Box 927
Dayton, OH 45401-0927
(937) 259-1384

Rehabilitation Research and Training Center on Policies Affecting Families with Children with Disabilities NEW! 2/9/99
University of Kansas
Institute for Life Span Studies
Beach Center on Families and Disability
3111 Hayworth Hall
Lawrence, KS 66045
(785) 864-7600

Research and Training Center on Family Support and Children's Mental Health
Portland State University
Regional Research Institute
PO Box 751
Portland, OR 97207-0751
(503) 725-4040

Research and Training Center on Independent Living and Disability Policy
World Institute on Disability (WID)
510 16th Street, Suite 100
Oakland, CA 94612-1500
(510) 763-4100

Research and Training Center on Independent Living (Underserved)
University of Kansas
4089 Dole Building
Lawrence, KS 66045
(913) 864-0575

Adaptive Parenting Equipment: Evaluation, Development, Dissemination, and Marketing
Through the Looking Glass 2198 Sixth Street, Suite 100
Berkeley, CA 94710-2204
(800) 644-2666 (national) or
(510) 848-1112 (Bay Area)

Disability Rights Leadership Archive
University of San Francisco
McLaren School of Business
Executive Master of Management and Disability Services Program
San Francisco, CA 94117-1045
(415) 422-2534

DTV Access Project
WGBH Educational Foundation
Center for Accessible Media
125 Western Avenue
Boston, MA 02134
(617) 492-9258

Illinois Joint Training Initiative on Disability and Abuse: Advocacy and Empowerment Through Knowledge Dissemination
University of Illinois at Chicago
Department of Disability and Human Development
1640 West Roosevelt Road
Chicago, IL 60608-6904
(312) 413-8833

Impact of the Home- and Community-Based Waiver on Employment Outcomes of Individuals with Disabilities
Virginia Commonwealth University
School of Education
Box 842011
Richmond, VA 23284-2011
(804) 828-1851

Marketing Health Promotion, Wellness, and Risk Information to Spinal Cord Injury Survivors in the Community
Craig Hospital, Research Department
3245 South Clarkson Street
Englewood, CO 80110
(303) 789-8204

Measuring Functional Communication: Multicultural and International Applications
American Speech-Language-Hearing Association

Macro International, Inc. 8401 Colesville Road, Suite 200
Silver Spring, MD 20910
(800) 227-0216

Improving Access to Disability Data
2560 Ninth Street, Suite 216
Berkeley, CA 94710-2566
(510) 549-6520

International Disability Exchanges and Studies Project 2000 (IDEAS 2000)
World Institute on Disability (WID)
510 16th Street, Suite 100
Oakland, CA 94612-1500
(510) 763-4100

National Center for the Dissemination of Disability Research (NCDDR)
Southwest Educational Development Laboratory
211 East Seventh Street, Suite 400
Austin, TX 78701-3281
(800) 266-1832


National Rehabilitation Information Center (NARIC)
KRA Corporation 8455 Colesville Road, Suite 935
Silver Spring, MD 20910-3319
(800) 346-2742

National Resource Center on Supported Living and Choice
Syracuse University, Center on Human Policy
805 S. Crouse Avenue
Syracuse, NY 13244-2280
(315) 443-3851

Rockville, MD 20852
(301) 897-5700

Multimedia Job Accommodations Curriculum Project for Persons Who Are Deaf or Hard of Hearing
University of Arkansas
Department of Rehabilitation Education and Research
4601 West Markham Street
Little Rock, AR 72205
(501) 686-9691

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The closing plenary allowed a summary from all the groups' meetings as well as suggestions from the floor on commitments we could make to improve the lives of women with disabilities. This was particularly useful for women who arrived later or who could not attend a workshop they were interested in. Summaries were also posted to CAL-WILD and the web page. Judith Heumann, the U.S. Assistant Secretary of Education also made a brief statement about the importance of reaching girls with disabilities and becoming more visible and active as part of the larger women's movement. The participants were asked to make concrete plans to increase their participation and to reach out to other women and girls with disabilities.

Suggestions from the floor for actions included:
Outreach to less visible women with disabilities,
giving a voice to the voiceless sisters,
finding out more information about funding,
setting up a business, writing books,
articles or creating art work ourselves,
reading books written by women with disabilities,
using audiotapes for books and making books available on audio tape,
providing a living web site and a 1 800 number,
doing mentoring with girls and/or women,
studying towards a degree,
doing research among women about their issues,
establishing a national or local organization for women with disabilities,
setting up support groups,
joining a listserve about disability issues,
women's issues,
interest areas,
learning more about computers,
adaptive technology and the internet,
teaching someone how to use the internet,
sharing skills with girls,
joining an arts organization or taking a workshop,
and network, network, network, mentor, mentor, mentor.


Women participating in the event had a diversity of experiences. Despite the range of needs and interests, several common themes emerged as urgent areas to be addressed. These themes can best be understood as areas which need attention for all women with disabilities but for which the form of intervention may be very different depending on the type of disability or experience levels. Information about all of these issues, or services designed to address them, desperately needs to be available and accessible to women with disabilities.

Self-esteem and personal development
From the keynote presentations to the individual comments on evaluations, there was a consensus that women with disabilities need support to develop positive self-esteem. That girls and adult women with disabilities need to be told that they are valued, need to see images of themselves in the media and in schools, and that they need to be able to improve their skills. Feeling better about who we are as women with disabilities is central to empowerment and independent living as well as accessing services.

Violence and suicide prevention
Abuse of many types is a serious threat to the well-being of women with disabilities. Sexual abuse, physical abuse, psychological and financial abuse, by caregivers, family members and professionals is a major problem leading to mental health problems and for some women, suicide. Suicide issues for girls and women with disabilities need to be addressed nationwide- particularly where phone lines and crisis intervention are not currently accessible or do not accommodate people with disabilities. Shelters for battered women, respite programs and violence prevention programs should also all be accessible.

Training Opportunities
Women with disabilities also identified the need for improved and increased training for a range of skills. Women wanted the skills to participate in the workforce, in their communities and in the arts. Many of the women wanted computer and internet training that suited their needs and their disabilities. Other women were interested in self-employment but needed training on how to manage a small business, how to apply for loans and how to make the transition to the workplace. Many of the women had exciting and creative ideas for marketing their products or services but limited knowledge about how to proceed. Other women wanted training around self-defense, interpersonal communication, parenting or family relationships. When providing training to women with disabilities it is important that instructional methods take into account various types of disabilities, including learning disabilities. Accessible, appropriate training is needed and information should be disseminated about programs which are currently available.

Peer Support and Mentoring
Women with disabilities need to have contact with other women with disabilities who share experiences and issues. To put women together in a society which isolates us can be difficult. Women who are "voiceless", underserved and marginalized are a particular priority. A focused effort is needed to ensure that women and girls are able to be part of peer support and mentoring programs suited to their needs. These may be at independent living centers, women's centers, through college campuses or connected to specific issues, ethnic identities or disability types. Reducing isolation can reduce problems with self-esteem, mental health difficulties, employment problems and improve overall well-being. Mentoring can also help disseminate information and skills among the community which increases access to the available resources.

Evaluation of Last Year's Event

Evaluation of Meeting Conference Objectives

Organizers always hope their objectives will be reached through activities provided to the participants. This year the ratings show that most women felt objectives were indeed achieved. The objectives set for the event were listed by the organizers. The participating women were asked how well they thought the objectives were reached on a scale of 1-5. "Opportunities for meeting other women" received the highest of the day and perhaps was the most important for many of the women as it was rated mostly 5's with a high average of 4.60. This is important considering the same women ranked other objectives lower. Women DID get a chance to meet each other!

"Actual training and skills development" was an objective of the day also. Based on needs identified in past events the organizers tried to provide some direct training but the timing of workshops made it harder than expected to actually do hands on training. More time is needed to give real skills to women. Instead most topics were simply "introduced" and women networked among each other. The average was 3.23 which is one of the lowest averages for any topic, but is still satisfactory.

Another goal was to provide accessible resource material. "Accessible resource material" was also positively rated with only a few women finding the written material not accessible to them. Despite our efforts to make audio tapes and computer versions some women found the large amount of reading to be difficult. The average was 4.02 with 41 women responding.

"Connecting women who share interests" was also positively rated as many opportunities during the day brought women together to discuss mutual interests. The average was 4.06 with 42 women responding. Overall, the women feel that the objectives have been achieved to a satisfactory level.

Fifty women (out of the 120 registered) handed in completed evaluation forms. Many women did not complete the overall goal rating possibly due to unclear instructions. The goal of meeting expectations averaged a 4.11 on the scale from 1-5 for the 27 women who rated it. Most women had their expectations met. Some did not and some had their expectations exceeded. None were totally disappointed.

Discussion groups
(four discussion groups were held concurrently in the morning)
• Disability Arts discussion group had an average rating of 4.43 out of 5 with 14 women responding.
• Media, Technology and Computers rated a 4.09 average with 11 women responding.
• Networking and Multi-Issues averaged 3.67/5 with 9 women responding.
• Academia discussion averaged a 3.54 with 13 women responding.

Mentoring time (one to one) was rated 4.17 with 6 women responding to the question. There were very few women who actually spent one to one time with a designated mentor. However, many women felt they touched base with women whom would later serve as mentors although they did not have time during the conference.

Only one Technology workshop was held due to restraints on the access to the internet and the hotel needing the room earlier than expected. Although two separate workshops were held for three of the topics, not enough women indicated which session they attended to merit analysis. So all workshops have been tabulated with aggregate totals.

• Funding and Following your Dream was rated an average of 3.86 with 22 women responding.
• Peer support and Mentoring received an average of 3.71 with 17 women responding.
• Sexuality and Relationships had an average of 3.96 with 27 women responding
• Technology and Networking had an average of 4.11 with 9 people responding.

It should be noted that workshops with a larger number of respondents may have in fact been well received but had a few dissatisfied women which brought average scores down. Similarly, the workshop with only 9 responses might have had many dissatisfied women who did not respond to the evaluation.

Plenaries and Logistics
Opening plenary was a highlight of the day for many women. The average ratings were almost 5/5 at 4 .69. This was a very positive result and many women found Cheryl Green's key note particularly inspiring.

Closing Plenary averaged at exactly 4 with most of the responses being 4 or 5 and a few women answered 3.

Lunch time networking, which was designed around interest topics, averaged 4.45. One woman commented that she preferred to eat, another wanted more time to eat and network. Several women commented that sitting around with women who shared their interest while eating was a wonderful experience that should have lasted longer.

Several questions were asked about the organization of the conference to help organizers improve how the event was planned and operated. Many women completed this portion of the form and most were more than satisfied. Only a few had specific problems.

Registration on internet averaged 4.59 with 27 women answering. One woman noticed how easy it was but felt some information had gone missing as result of the computerized system. Registration on the phone averaged 4.3 with only 10 women using this service. Registration in person averaged a rating of 4.48 with 23 women who all seemed quite satisfied.

Accessibility was generally quite good.
Communication accessibility averaged a high score of 4.62 for the 29 women who replied. The participants were mostly "very satisfied" with financial accessibility with a few finding the transportation costs expensive or the fact that hotels cost money despite the scholarship received for registration fees. The average was 4.53 for 40 people.

Physical accessibility was highly rated at 4.46 although some women did show concern for air circulation and lack of appropriate signage at stairs. (42 respondents)

Lunch averaged 4.40, and while most people enjoyed the meal some people wanted more time for eating lunch so they would not be rushed.

Schedule and pacing of the day averaged 4.10. Comments included not enough breaks between meetings for transitions.

Although the original schedule did accommodate 15 minutes between events, being late or running over time resulted in very little time to move between sessions. An effort should be made in future to really follow the proposed schedule even if it means reducing length of workshops to increase breaks.

Support services received almost all 5's with an average of 4.52 given a few lower ratings.

The BEST and the WORST of the Day

The best part of the day:
An overwhelming majority found the NETWORKING the best. Ten percent named the opening plenary the best and 7% named the sexuality workshop the best. The other topics were between 4 and 2 % representing two women or individual comments.

The worst part of the day:
Thirty-seven percent needed more time (either for the whole day or for parts of it). Fifteen percent explicitly stated that there was "no worst part". Some women found the afternoon disjointed, some women commented about the need for more time in discussions and breaks between activities, and the name tags that identified city or affiliation. There was also a suggestion that more advanced workshops were needed and one woman suggested that organizers should not also facilitate workshops.

The following demographics only represent the information provided voluntarily by those responding to evaluations.

There were more than 120 women at the event and only 50 evaluations were coded with less than 40 responding to these specific demographic questions. This means that the demographic break down represents only a third of the total population attending the event and may not be representative.

For 66% of the women responding, this was their first event of women with disabilities. Another 29% had been to 2-4 other events and only 5% had been to 5 or more.

The age range and ethnic/racial identities of the women were quite diverse. European-American women were 48% percent of the women who answered the evaluation questions. Twenty-two percent left the question blank. African-American women, Latina, and Asian-Pacific and Jewish women were each 6%. Four percent self-identified as being of mixed race. Women between 25 and 46 were in the majority with only a few older and younger women attending who self-identified. (Noting again that less than half of the attending women answered the evaluation form questions).

Only seven of the women responding were members of Cal-Wild list serve although 39 had access to the internet. Four had no access and 9 had access at both home and work/school. It is important to note that a great deal of the outreach for this conference was done on the internet so we may have self-selected a sample of women more likely to have internet connections. However, 66% of the women responding had never attended an event for women with disabilities so we did reach women who are not experienced and may have been excluded from previous outreach. It is clear that future events must make special efforts to involve women who are not using the internet, but also to make use of the power of networking that the internet provides. More women may be able to connect using Cal-Wild and the web-site established for this conference.

It is particularly difficult to reach women who have difficulty participating in large events. Special efforts were made to ensure that women would be financially assisted with registration, would have accessible materials, personal supports and accessible environments. Women with developmental disabilities, environmental illness and women of color were also specifically sought out and supported. This event included a very diverse group of women. The diversity made it difficult for some women to get their needs met, and the diversity made it possible for other women to see what is possible. The exposure to a wide range of women's experiences and interests enriched the event and made it an important influence in the lives of the participants.

1.The conference met the goal of connecting women to each other and having women meet others who shared interests. The objective of providing training was not completely met and should be taken up as a priority for the next event. Resource materials were widely appreciated, but need to be made more accessible and available for women who do not read well. This is a challenge for any dissemination effort.

2. Low self-esteem is a particularly difficult barrier for women with disabilities. For women to be able to look for work, sell their own products, maintain healthy relationships, be mothers, or be active in their communities they need to feel safe, strong and educated. Priority should be placed on eliminating violence, supporting women's personal development and providing access to further vocational training, employment, peer support and independent living services.

3. Women have a range of skills and needs, not all of which can be met in one conference. It would be wise to hold a "first timers" event with ample direction and support as well as a "veterans" event for those more experienced. There should, of course, be a chance for the new and more experienced women to interact. However, their needs are different and could be best met by targeting training accordingly.

4. Longer sessions, and perhaps a two day event, will provide more time for discussion, training and networking. This must also include the breaks between the events and time for transition, resting and networking as many women have disabilities which affect their stamina.

5. Outreach is needed to ensure that women who are "voiceless" are included as well as outreach to women who are not part of the internet and current organizations for women, or for people with disabilities.

6. Local and regional trainings are needed, not just national events. Some women need to have regular access to information at their home community level rather than general information at the national level. In addition women need time to meet with women who share the same disability or same personal situation in addition to having cross-disability and cross-issue workshops.

7. Databases and information sources for women need to be accessible so that skills development, independent living and economic self-sufficiency goals can be pursued. A national or coordinated effort is needed to ensure that women have easy access to essential information.

We have included this report because we feel evaluation and reporting is part of the event. If you did not attend last year's event in Oakland, this will give you a sense of what happened. If you did attend, and completed an evaluation we hope we heard you accurately. We also hope this year's event reflected positive strategies to include more women and to make changes you felt were necessary. We always appreciate feedback- good or bad, please complete this year's evaluation or email us. This entire resource guide will be on the internet with active links at Thanks to Pat Chadwick and Steve Dias of the Disability Social History Project for providing the space for this resource.

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