Women with disabilities, sexuality, and society's ideal woman

Women, Disability, Sexuality and the Image of the Ideal Woman

Women, Disability Sexuality and the Image of the Ideal Woman

The proposed course of research here is on the subject of women, disability and sexuality. The expectation of society is that disabled women are disabled sexually as well as physically because society cannot perceive women with disabilities in a way that is compatible with society's image of the "ideal woman." That is, the woman who is physically, emotionally and psychologically healthy; educated or intellectually alert, financially independent, reproductively healthy and capable of producing offspring; and able to balance all these things in a way that does not reveal her weaknesses.

This paper will attempt to gain a sense of the psychological, physical, emotional, and social realms within which disability impacts women's sexuality. That is: How does society respond to women who are physically, noticeably disabled; and how does society respond to women whose disabilities are not observable? How do women suffering noticeable and unobserved disabilities express themselves sexually? How do they touch their femininity in a way that allows for them to be fulfilled sexually? Do Stereotypical images of "the ideal woman" impact a woman's disability beyond the physicality of that disability?

In researching the topic and seeking answers to these questions, the research will rely upon existing studies and research to reach conclusions and understanding of the subject matter. Those works will support the introduction to the study with input from a woman whose own disabilities have served to inform her study on women, disabilities, and sexuality; Susan S. Stocker, 2001.

Alexander McKay's (2001) research on women, disability and sexuality and reproductive health will serve for forming a basis in thought for connecting to women and their reproductive health and sexuality.

An example of an "extraordinary body" will be taken from the study by Rosemary Thomson, and will serve as an example of how society arrives at an image of the ideal woman, versus that of the flawed, disabled, or freak woman.

Insight as to new perspectives on sexuality will be gained through the work of Zira DeFries, Richard C. Friedman, and Ruth Corn (1985). Although these insights will be contrasted with perspective in 1985, and today.

Gelya Frank (2000), will be relied upon extensively to supply the case of Diane DeVries, a physically disabled woman, who achieved a full and sexually active and satisfying life in spite of her disability. Frank's case study provides the perspective from which society perceives women with disabilities.

Women who suffer "invisible" disabilities, and whom are affected by reproductive disability, will be informed by Satya B. Bellerose and Yitzchak M. Binick (1993). Their work will contribute to the understanding of how women who are not able to reproduce are actually severely disabled by nature of the condition that renders them incapable of being reproductive, and by virtue of their inability to bear children.

Finally, G.J. Barker (2000), will serve to provide closing remarks, contributing insight to this research as to men's overall reaction to women with disabilities. Male attitudes are the product of the image of the ideal woman, which is an image that disabled women are challenged with overcoming, in addition to their disabilities.

Introduction

Susan S. Stocker (2001), writing for Frontiers - a Journal of Women's Studies, discusses at length her own experiences as a hearing disabled woman, and how her disability shaped her life from a very young age, including her sexuality (p. 154). Stocker's first-hand experiences, and her forthright discussion in detail of her emotional rollercoaster ride during which she struggled to overcome her disability and its saturation of her overall well being, identity, family relationships, and, as an adult, her sexuality (2001, p. 154). Stocker creates the basis for a broad insight into understanding disability and sexuality from the perspective of the woman who suffers a disability, beginning with her earliest life recollections (2001, p. 154). Stocker also discusses her sense of perfectionism that arose out of her desire to compensate for her disability, and that this sense of perfectionism was constantly in competition with the disability itself, in an effort to overcome it (2001, p. 154). While Stocker attributes her obsessive level of quest for perfectionism, which, in her case, manifested itself in athletic superiority and shaping her body into one of a superior athlete; women who become disabled later in their lives, especially as young adults, and as women who have not had the opportunity to compensate for their disability in the way that perhaps Stocker did, are no less, and perhaps even more so, impacted by that disability and its affects on their sexuality. Like Stocker, most women are obsessive in their pursuit of physical perfection, even if they are not physically the image that contemporary society associates with the physically ideal woman. Thus, when women are confronted with debilitating and life threatening disabilities, they tend to suffer not just the physical affects of their disability, but the emotional trauma and crisis in confronting their physical imperfection in a way that has a life altering impact on their sexuality.

This study explores the impact women's disabilities on their sexuality, the most intimate aspect of their femininity. The attempt here is to bring to light the problems that arise for women with respect to their continued expression of their sexuality, their intimate relationships, and what they perceive as the quality, or lack thereof, in the sense of personal sexual fulfillment post disability. The questions that will be explored here are: How does disability impact intimate relationships between a woman and her sexual partner? How do women whose relationships withstand the pressures and the trauma of disability manage their relationships to continued success in spite of disabilities? How does disability alter women's perception of themselves sexually?

These are very personal and difficult questions, and an attempt is made here to explore and answer these questions in the most frank and forthright manner that research of existing studies allows. The goal here is to present the research from the perspective of women, but it will rely upon input from the intimate partners of the women who are the focus of this study too.

Women and Reproductive Disabilities: The Inside Perspective

Women suffering reproductive disabilities, such as ovarian cancer, manifest those suffering in a way that is slightly different from the woman whose physical disability if more visual; though not less all around devastating.

Alexander McKay (2001), in a journal article appearing in the Canadian Journal of Human Sexuality, stresses the need for women suffering any kind of a disability to seek "comprehensive sexuality education and sexual health services that are appropriate to their specific needs (p. 65)." McKay cites a study conducted by Walter, Nosek and Langdon comparing women with physical disabilities and women who had no disabilities, and the study revealed that both groups of women were as well informed on their sexuality, but that women suffering disabilities had fewer sexual experiences than did those women who had no disabilities (p. 65). Women who suffer disabilities and who have fewer sexual experiences as compared with those women who have no disability, are, by virtue of their disability, further sexually impaired. Their quality of life is not just impacted by their physical disability, but by the reduced or even absence of sexual intimacy.

Sataya B. Bellerose and Ytizchak M. Binik (1993) write on the subject of women and their body images, referring specifically to women post surgery, during which their cancerous ovaries were removed (oophorectomy) (p. 435). The authors stress the importance of understanding how the procedure, oophorectomy, affect women's health, emotionally and physically (p. 435). Emotionally and physically mean body image, mood, and sexual functioning (p. 435). First, and very important, the procedure increases the patient's risk for heart disease, osteoporosis, and genitourinary atrophy (Cutler and Garcia, 1984; Henderson et al., 1988; Hreschyshyn et al., (1988), "and it is therefore recommended that exogenous hormones, typically estrogens (estrogen replacement therapy, EST) or less commonly, a combination of androgens and estrogens (combined hormone replacement therapy, COM) be prescribed (Bellerose and Binik, 1993, p. 435)." Subsequent research, however, brings into discussion the usefulness and the extent to which long-term hormone therapy should be employed as a post surgical treatment (Egeland et al., 1988; McKinlay and McKinlay, 1984) (Bellerose and Binik, 1993, p. 435).

Bellerose and Binik cite a studies (Andersen and Jochimsen, 1985; Krouse and Krouse, 1982), that showed that women experiencing oophrectomies had more difficulty adjusting to their post surgical body images (Bellerose and Binik, 1993, p. 435). Suggesting that even though the disability was less physical than the comparison group, women having undergone mastectomies, that the unseen disability was more difficult for the women to deal with and to reconcile with their physical self when wearing swimming attire (p. 435). The weakness of the study was that there is no measurement, standardized measurement, by which to measure comfort levels with respect to a woman's comfort with her own body.

However, because gynecological surgeries as a result of cancer or other conditions that warrant such procedures, impact the mood of women, their self-identity, and body images, suggesting that they have trouble reconciling what their body has experienced, the trauma of having lost organs that regulate to some extent a woman's sexuality. There is probably no way that this experience does not intrude upon the woman's intimate relationship, creating self-consciousness about her physicality, and about her ability to, in some cases, manifest the ultimate expression of a man and woman's bonding by an inability to become pregnant by her partner, and to give birth to his child.

How do men respond to women who have undergone these kinds of procedures? Well, first, whether or not men do respond negatively to this kind of information is second to how a woman might believe they respond to this news. Given our "ideal woman," and her scenario, her fears might be obvious: she is on a professional fast track with a partner whose expectation is that she maintain her earning power and contribute to their financial security by minimally being able to support herself. In this respect, she might not be impacted post surgical recovery. However, their relationship would change on an intimate level because the ideal woman has become flawed, physically, because she now undergoes hormone therapy; reproductively, because now choices like adoption must be considered. When studies such as those cited by Bellerose and Binik suggest women experience problems with body image and mood swings, this arises out of the way in which women, if not researchers, connect to their sexuality as it is defined in personal terms of satisfaction arising out of intimate relationships with their partners.

The fact that a gynecological disability, having been rendered incapable of childbearing, is proven to take no less a toll on a woman's overall health because the disability cannot be seen by others.

Physically Observable Disability and Women's Sexuality

Gelya Frank (2000) writes of her friendship and study of Diane DeVries, who Frank describes as,.".. A woman born with the physical and mental equipment she would need to live in our society - except arms and legs (p. 1)." Devries was an undergraduate student when Frank met her, and Frank recalls vividly observing for the first Devries as she entered the lecture hall. Frank describes it this way:

It as the spring quarter, and Diane was enrolled in the large introductory lecture course on cultural anthropology, for which I was a teaching assistant. From my vantage in the back of the lecture hall I watched a blond woman enter the classroom in an electric wheelchair. She looked to be in the fullness of womanhood, wearing a sleeveless white top with narrow straps. Her tapered arm stumps seemed daringly exposed, and the mysterious configuration of her hips was encased in tight blue jeans that ended where he legs should have begun (Frank, 2000, p. 1)."

From Frank's description of DeVries, we can see that the young woman made every effort to touch her femininity, her sexuality, beyond her disability. DeVries addressed her physical image with fashion, and was clearly strive to either achieve or maintain her feminine image, and perhaps even her self-esteem.

As Frank goes on to further describe that which could not be seen about DeVries, Frank's thoughts are revealing of what many in society might expect when meeting DeVries, as well as the disadvantage that DeVries' disability created for her in society, without people knowing her on a personal, much less intimate level. Frank writes:

As I observed this woman, I imagined that she lived at home with her parents in a sheltered and socially isolated household. I supposed that she would never marry or have sex. I guessed that she couldn't even masturbate. In short time I was proved wrong on all these counts, and perhaps I should not have been surprised. There was something of the sexual rebel in Diane's appearance, a touch of the "bad girl," that may have engaged my voyeurism and sexual fantasies at the same time that I tried to suppress and ignore them. My preoccupation with Diane's ability to marry and have sex revealed much more about me than about Diane. I hadn't met her. I didn't even know her name (p. 2)."

It does not just reflect what Frank did not know about DeVries, it reflects what society wants to believe about people with disabilities. It is, agreeably, an indication of our own inability to relate and to accept people with disabilities, but it is nonetheless the roles that we for the most part relegate to people with disabilities. In the case of DeVries, Frank was unable to immediately relate the messages DeVries was sending about herself to Frank, in a way that Frank might have immediately associated those messages that a woman who was not physically disabled might have been sending about herself. Frank's first base with the image of DeVries was one of putting DeVries in the position of victim, and further disabling the victim by adding to the physical disability a sexual impairment.

Frank goes on in the book to detail a subsequent twenty year relationship with DeVries that yielded vast amounts of data on women and disabilities, but also notes that women suffering disabilities, and women's rights in general, were not synonymous movements, although the women's rights movement did facilitate the rights of women suffering from disabilities (Frank, 2000, p. 3). Over their twenty year relationship, Frank made perhaps as many startling discoveries about herself. On this discovery, Frank writes:

My fascination with Diane prompted me at once to explore the sources in myself that made the image of a woman without limbs so intriguing. Through systematic self-reflection I probed my identification and empathy with her situation, uncovering my own invisible disabilities and then disentangling them from the way Diane sees herself (p. 4)."

DeVries, in fact, was a woman who achieved a full life not in spite of her disabilities, but being disabled. She had a meaningful and complete relationship with a man, lived with that man for nine years before they were finally married (p. 146). This is not to say that DeVries life was all fashion, sex, and no problems. She is a woman born without her extremities, and who has had to overcome first, her own disability, then that of the public at large, as we know by Frank's reaction; and then the challenges of meeting and becoming psychologically, intellectually, and physically involved with a man who would become her husband.

Most men, and I would suggest, no men, would, when asked to describe their ideal woman, begin by describing Diane DeVries, or a woman who was disabled, or who was born deaf or without her extremities. Nor do I think that a woman seeking an alternative life style relationship would be any more prone to describe that as her ideal life partner than might a man be. Here is a truly equal ground upon which stand both men and women. Thus, given these enormous individual social blocks to achieving fulfillment as a woman, a sexual woman, when disabled, it is noticeable that even if a woman overcomes her own fears and concerns with her image, she has to overcome those same fears and concerns with her image in the minds of others before she can engage in a fulfilling sexual relationship. She is not anyone's ideal woman - at least not that a man might immediately recognize as such.

Expressions of Women's Sexuality When Disabled woman's sexual identity is a combination of multiple factors, not the least among which are 1) her relationship to her mother, 2) reconciling her susceptibility or lack therefore to becoming pregnant 3) her body image 4) her age and mortality, anxiety about loss of youth, and 4) her career, or the power with which she feels embodied in her life, and, finally, 5) her relationship with her life partner (male or female).

These expressions of sexuality are not diminished by disability, whether that disability is observable or not; but are furthered enlarged by the disability. The immediate psychological need that is imposed by disability is a need to compensate for the disability; thus, when a disabled woman looks to compensate for the disability, she is, as compared to other women, over compensating for those other factors that form or impact her sexual expression of herself.

Zira DeFries, Richard C. Friedman and Ruth Corn (1985) discuss women and sexuality. Their comments on pregnancy reflect attitudes and perspectives on sexuality that support the contention here that reproduction, or lack thereof, is a major element in a woman's expression of her sexuality (p. 3). That reproduction has positive and adverse impacts on a woman's sexuality, the authors write:

It has only been two decades since pregnancy was considered a disease of nine months duration. We now understand pregnancy as a normative function with special characteristics that make it similar to other developmental crises of the life cycle, such as puberty. When a woman becomes pregnant, particularly for the first time, she is confronted with new challenges. These may precipitate the emergence of earlier identifications and unresolved issues, but at the same time there is an opportunity for further growth and maturation. Even a woman who chooses not to continue a pregnancy can experience it as a positive indication of her normal physical functioning as a woman (p. 3)."

Thus, when the ideal woman is disabled and not able to make the choice to become pregnant, she is deprived of a normal physical functioning from which she would otherwise benefit (p. 3). Also, the ideal woman who has become disabled by an inability to express herself sexually by becoming pregnant, might expect that the life partners she from whom she has to choose amongst, has become more limited than that group from which she would have to select from if she did not suffer this disability.

Giving birth and mothering are demonstrations of woman's adequacy as a complete woman, and nurturing serves to complete unresolved aspects of her relationship with her own mother and father that help the woman arrive at a fullness and completeness in her life that is productive and positive (pp. 3-4). As a nurturing and caring mother, she is further expressing the bond with her husband or partner, and it serves as an expression of that bond. If that bond cannot be expressed, then it can be emotionally crippling to a woman.

Exploring how the disabled figure operates in society, a society that deems disfiguration as deviant; Rosemarie Garland Thompson (1997) explored social reactions to deviant shapes, or disfigured women.

Society's reaction to women who are disfigured has been one of carnival, putting those women on display as human oddities (p. 55). Even Diane DeVries, had she been born as early as perhaps a decade later, would have been perceived with more of a carnival attitude because of the ways in which she had overcome her disability, reconciled her disabilities, and as a result of having overcome them and reconciled them, was able to touch her femininity and was able to express it.

Thompson cites the case of a Brazilian woman named Tono Maria, exhibited as a "freak" in London, whose carnival line was, "the Venus of South America (p. 55)." About her, Thompson writes:

Her body bore nearly one hundred scars, each ostensibly representing an act of adultery. According to her pitch man, her culture's social code allowed a maximum of 104 such scars but punished the one hundred-fifth transgression with death. Her sexuality was thus purported to have reached the edge of even her own ostensibly save society's standards. Complementing the display of this "Venus's" signifying scars was her performance, which consisted of eating to satiety despite the encumbrances of a large lip-stretching device and toothlessness. A contemporary journalist summed her up as "lazy" and "nasty," describing in detail the "emetic spectacle" of her sybaritic achievement. Regardless of his disgust, the observer leaned from Tono Maria's show a useful lesson: having previously failed to fully appreciate English women, he would forever after "pay the homage due to the loveliest works of creation, enhanced in value by so wonderful a contrast (p. 55)."

Summary

Alexis de Toqueville's observations of American life and ways have served as a basis for understanding Americans since the early years in American history. On the relationship between men and women, G.J. Barker-Benefield cites de Toqueville as having observed this:

Tocqueville's observations of the typical American male's behavior in the face of the wilderness provide a suggestive frame for an account of his observations of the typical sexual relations between an American man and his wife. "Everywhere extreme civilization and nature abandoned to herself find themselves together, and as it were, face-to-face." Tocqueville was sensitive to his natural surroundings. In spite of his soul's penetration "by a sort of religious terror" he "couldn't keep from admiring the supreme horror of the place," the wilderness. On one occasion he and his companion were softened into a rare state of consciousness, beyond the will to express it. Open to see nature's momentary equilibrium, Tocqueville became aware of the corresponding dimension of his own body.

The canoe slid without effort or noise. There reigned about us, a universal quietness and serenity. We ourselves soon felt as if it were softened by such a spectacle. Our words began to come more and more rarely. Soon we expressed our thoughts only in a whisper; finally we fell silent; and lifting our paddles in unison, the two of us sank into a tranquil reverie full of inexpressible charm.... Who will ever faithfully paint these rare moments in life, when physical well-being prepares you for moral tranquility, and when, before your eyes, as it were, a perfect equilibrium is established in the universe; when the soul, half asleep, balances between the present and the future, between the real and the possible, when, surrounded by beautiful nature, breathing calm and balmy air, at peace with himself in a universal peace, man lends his ear to the even beating in his arteries whose every throb marks the passage of time which, for him, seems to flow drop by drop in eternity.

He presented these feelings as "the sweetest and most natural emotions of the heart (Barker-Benefield, 2000, p.4)."