Disability World
A bimonthly web-zine of international disability news and views, Issue no. 7 March-April 2001


Women:

Amputated Desire, Resistant Desire: Female Amputees in the Devotee Community

By Alison Kafer (Alison.Kafer@cgu.edu)

Presented to Society for Disability Studies Conference, June 2000, Chicago

In the spring of 1996, I had my first encounter with the amputee/devotee community. I connected to the Internet, typed "amputee" into a search engine, and found myself confronted with a world I never knew existed. The addresses of several websites appeared before me, all of them promising community and companionship to amputees. These sites featured chat rooms, advertised conferences where devotees and amputees could meet, ran personal ads, and sold photographs and videos of female amputees. Primarily, however, the websites seemed intent on explaining and defending the actions and motivations of devotees. "Devotees," I quickly learned, were men attracted to women with amputations and other disabilities. In other words, men attracted to me.
 

A Chilling Community

I felt a strange sense of familiarity when I clicked onto those websites, even though I had never heard of devotees before. The familiarity, however, was due not so much to a sense of shared community as to a feeling of resignation. Due to the stares and hostile responses I received on the street, I felt disturbingly unattractive, convinced that no one could ever love someone who looked like me. No one, that is, except a devotee. Reading the webpages, I realized that the people staring at me in the street weren't the aberration, the devotees were. The mere fact that they were clustered on the Internet, defending their desire for amputated women, seemed to testify to the unique nature of their attraction. The defensive rhetoric of the websites confirmed my fears that the larger culture viewed women like me as unattractive and undesirable. Otherwise, I reasoned, why would such organizations even be necessary? Discovering the online amputee/devotee community filled me with resignation because it seemed to offer me my only chance of community, support, and companionship. I was suddenly inside a community of which I wanted no part, a community which chilled me to the bone.
 

Refocusing on the Women

In my first encounters with the amputee/devotee groups, the women in these organizations were largely invisible to me. Despite my original intent to learn more about women amputees, despite the web space devoted to these women's pictures and stories, all I could see were the stories of the devotees. The very idea of disability fetishism was so new to me that I forgot about the women in trying to understand the men. As time has passed, however, and as I have become more interested in the specific barriers facing women with disabilities, I find myself returning to the amputee women involved in these groups. What are they finding in the amputee/devotee community that I had missed? Although I had previously ignored these women in my first forays into the amputee/devotee community, I now find their stories compelling. What motivates their involvement in organizations that many people perceive to be exploitative and distasteful? What possible benefits do they derive from their interactions with other amputees and devotees?

I find these kinds of questions intriguing because most of the published research on the amputee/devotee community has focused exclusively on the devotees. Questions about the experiences and motivations of amputees involved in such groups have not been raised, and they constitute the inspiration behind this paper. In the fall of 1999, I re-introduced myself to the amputee/devotee community, asking Jama Bennett, the founder of Amputee Support Coalition of the World (ASCOTWorld), if she would be willing to discuss the group and her participation in it. Through those conversations, I begin a preliminary exploration into female amputees' own understanding of ASCOTWorld and its function in their lives. Bennett herself suggests that ASCOTWorld serves as a site of empowerment for female amputees, resisting dominant cultural stereotypes about the asexuality of disabled women.

In this paper, I discuss this potential for resistance. I argue that although disabled women's participation in ASCOTWorld may not fundamentally disrupt dominant discourses on the asexuality of women with disabilities, it does have a positive effect on the lives of the women themselves. ASCOTWorld's potential for resistance must be understood as a negotiation between its effects on the larger culture and its impact on the lives of individual women with disabilities.
 

Stereotypes and Pathology

Discussing the assumptions that nondisabled people have toward those with disabilities, Jama Bennett comments that "there is an overwhelming perception in the temporarily able-bodied community that people with disabilities are asexual and childlike." Due to this stereotype, she adds, "many new amputees (including myself) wonder if they will ever be desirable or attractive to a man again."(1) Bennett's remarks stem from her experiences within a culture in which the sexuality of the disabled body, particularly the disabled female body, is continually ignored, denied, or pathologized.

Most of the literature on the amputee/devotee community perpetuates these stereotypes. A majority of the research focuses primarily on the devotees, thereby portraying amputees as silent, passive objects of the men's desire. Moreover, because this literature explores the causes and repercussions of devotees' attraction to amputees, it casts the attraction as a pathology that must be treated or eliminated. I do not want to debate the medical merit of such a diagnosis; rather, I want to highlight the cultural assumptions about the sexuality of disabled women that underlie such a characterization. If we cast devotees as "sick," then what are we saying about the desirability of disabled women? Is it pathological to find disability attractive? Women amputees are largely invisible in these discussions, and when they do appear, it is only as victims who have been harassed or duped by devotees.
 

Fetish, Pornography Or?

Some feminists have continued this trend by seeing devotees as practicing a dangerous form of pornography. R. Amy Elman, for example, asserts that devotee publications contribute "to the second class safety and status of all women and girls, particularly those with disabilities."(2) She examines several issues of The Amputee Times, a magazine catering to devotees, focusing on "the fetishization of women's vulnerabilities" and devotees' comments about compiling registries of attractive women amputees. Although I agree with Elman that the behavior of some devotees is troubling, particularly the impetus to create a registry of "available" amputees, some of her comments trouble me as well. Elman sees disabled women only as objectified victims in need of protection, not as agents or subjects. Furthermore, she ignores the women depicted in disability pornography, discussing only the photographers and publishers of the imagery. In so doing, she implies that disabled women would only be interested in posing for "sexy" pictures if they were duped or coerced into it.

Disabled women have often been dissuaded from any form of sexual expression, and women housed in institutions face particularly harsh strictures on their sexuality. Gayla Frank discusses the experiences of Dianne DeVries, a quadrilateral amputee, who frequently encountered criticism about her choice of dress during her stay in a rehabilitation facility. Frank explains that the medical team assigned to DeVries wanted her to wear cosmetic prosthetic legs, prosthetic arms, and long-sleeved, baggy clothing in order to reduce her disabled appearance. Her refusal to wear these devices met with consternation from her doctors, who characterized her decision as a sign of "maladjustment," rather than independence. Her preference for sleeveless dresses and tank tops was even more troublesome for the staff, who saw her appearance as "'somewhat unattractive and possibly disturbing.'"(3) Her medical team encouraged more concealing clothing not in order to improve her physical functioning, but to make her appearance less shocking and disturbing for others. In the doctors' desire to make DeVries' disabilities invisible, they effectively made DeVries invisible; her opinions and desires about her own body, disability, and worth were ignored in their judgments of her actions as misguided, maladjusted, and unattractive.
 

Hiding and Disguising

The impulse to hide one's disability is strong. Although DeVries rebelled against her doctors' requests that she cover her stumps with clothing and cosmetic prosthetics, many other amputees voluntarily camouflage their bodies with baggy clothing. The attitudes expressed by DeVries's doctors -- that a visible amputated stump is "'somewhat unattractive and possibly disturbing'" -- are ones that many amputees have encountered. That "expert" viewpoint, when combined with the relative absence of amputees in the media and public sphere, discourages amputees from making visible their altered or abbreviated bodies. The cultural construction of women with disabilities as asexual, deviant, and unattractive affects the self-perception and self-presentation of disabled women, impelling them to disguise -- and be ashamed of -- their physical differences. As Bennett herself states, "I wore long skirts and dresses for ten years, never shorts or slacks, to hide my stump because I felt like I should keep it hidden."(4)

During the seven years since Bennett's first encounter with the devotee community, however, her attitude toward her own body has changed dramatically. "After I found out about Devotees," she explains, "I started wearing slacks and shorts and swimsuits and let my stump show. I realized it was just my leg, and if someone preferred not to see it then they could just not look."(5) Bennett's comments reveal the immediate impact the devotee community had on her self-confidence. Simply learning about the existence of men who found her attractive because of her amputation, not in spite of it, caused her to shift radically her understanding of her disability. It is this shift that led to her involvement in ASCOTWorld and to her understanding of the organization as a site of resistance.

Lolly Gibbs, an amputee due to complications from diabetes, became involved with ASCOTWorld soon after losing her fiancé. He left her after her amputations because he could not adjust to her dependence on a wheelchair. Gibbs eventually met two members of the devotee community through the personal ads in a local newspaper. "'I'd never heard of devotees before,'" she explains, "'[but] the men were both so nice, so attentive and understanding. They gave me lots to read about their attraction and told me about the Fascination Weekends.'"(6) After attending a series of Fascination and ASCOTWorld conferences, Gibbs reports a transformation akin to Bennett's. "'I finally felt like I belonged, that I was attractive and even sexy...I wasn't ashamed to be seen in public anymore.'"(7)
 

Empowerment and Valorization

Both Gibbs and Bennett describe their meetings with devotees as empowering experiences. After consistently being treated as unattractive or asexual because of their disabilities, these women were meeting men who saw them as more desirable than nondisabled women. In valorizing women with disabilities, the devotee community seemed to ignore prevailing ideals of beauty, choosing women that other men had rejected as not sexy or desirable. Bennett explains that "anything that gives a woman more confidence or belief in her sexuality is positive," and she credits organizations like ASCOTWorld with doing precisely that for her and countless other women.(8)

Bennett suggests that ASCOTWorld's refutation of disabled women's asexuality extends to its photo and video sales and its Internet image site. The image site is accessible to subscribers only, and Bennett estimates that it features about 28,000 still shots of women with disabilities. Any amputee who wants to make a photo set or a video is assisted by Bennett and ASCOTWorld. Most of these videos sell for one hundred dollars, sixty percent of which goes to the model herself. The rest covers "reproduction, shipping and handling, and advertising."(9) The videos are intended to function as personal ads, introducing "single women to devotees who might want to meet them on our weekends."(10) ASCOTWorld is not the only group to offer such services. CD Productions, operated by Carol Davis, is another organization that produces and distributes photographs and videos of female amputees.
 

One-Legged Dream Lover

Both Davis and Bennett claim that these videos and photo sets are beneficial for the models. Not only do they benefit from the extra money, they also experience a boost in their confidence and sexual awareness. Joy, one of the models with CD Productions, explains, "I know what it's like to be rejected by men because of a missing limb...It feels wonderful to be admired for the way I am."(11) Other women with disabilities echo Joy's response. Kath Duncan, in her video My One-Legged Dream Lover, talks about how exciting her photo shoot was because she was able to place her whole body on display and to feel like her stumps were sexy. These women's comments suggest that simply finding a venue in which their particular bodies are not only accepted but embraced seems to have a remarkable impact on their self-awareness.

The proliferation of imagery depicting disabled women as sexy and attractive may be beneficial not only to the actual models, but to all women with disabilities. Jane Elder Bogle and Susan L. Shaul report that one of the major problems affecting the sexuality of women with disabilities is a lack of role models. For many women, particularly those who become disabled later in life, it is difficult to learn to incorporate wheelchairs, prosthetics, scars, and braces into their ideas of what "sexy" is.(12) ASCOTWorld is one of the few places where an amputee can find images of women who look like her, and of women who are incorporating their disabilities into their understandings of "sexy." By making such images available to other disabled women, ASCOTWorld provides them with models for integrating sexuality with disability, for resisting the asexuality imposed on them by nondisabled culture.
 

Women-Owned & Operated

Furthermore, as Barbara Waxman Fiduccia has noted, many of the devotee organizations are actually run by amputee women.(13) Fascination, ASCOTWorld, and CD Productions are all owned and operated by women amputees; they decide the format of their publications and the ground rules for their organizations. Moreover, all of the profit for the videos and photos is given to the models themselves. Waxman Fiduccia stresses the radical aspect of these ventures; disabled women have wrested control of their sex lives from doctors, psychologists, and, to an extent, the devotees. The women are in control of their own production.

Although I still feel some discomfort about the idea of devotees, I am beginning to feel an affinity with the amputee models and organizers. These women are refusing to accept quietly the stereotypes placed on them by a nondisabled culture. Actively affirming their right to speak about, use, and display their bodies as they see fit, they are providing powerful examples of alternative ways to view the disabled female body.

The impact their portrayals have on the larger culture has yet to be determined, however. Although involvement in the devotee community may change some amputees' self-perception, it may not have any effect on the perceptions nondisabled people have about them. Indeed, some may view the formation of groups like ASCOTWorld as proof that people with disabilities are wholly Other. The existence of devotee communities may suggest that only devotees can find disabled women attractive; desiring disabled women may be seen as a "condition" only "afflicting" select members of the population. Such a response is not even limited to the nondisabled. I first saw sites like ASCOTWorld as proof not of my desirability, but of my undesirability. In this way, amputees' involvement in the devotee community may actually perpetuate the idea of disabled women as asexual and undesirable, thereby negating ASCOTWorld's potential resistance.
 

Values and Prejudices

Moreover, the devotee community still reflects many of the larger culture's values and prejudices. In My One-Legged Dream Lover, Duncan expresses disappointment at discovering that devotees are as critical of women's bodies as non-devotees are; while they may differ from the mainstream in valorizing stumps as sexy, they too criticize women for being overweight or unattractive. In other words, the devotee community is not an utopian sphere in which physical appearance is irrelevant. In rejecting the stereotype that disabled women are undesirable, many devotees simultaneously perpetuate hegemonic ideals of beauty.

Furthermore, some segments of the amputee/devotee community mirror the heterosexism which pervades western culture. Although there are a number of sites on the Internet serving gay male amputees and devotees, sites catering to lesbians are less common. One of the few lesbian sites I have discovered is frequented primarily by straight male devotees in search of "lesbian amputee love goddesses," and has been defaced at least once with homophobic comments and graphics. Even more telling is the fact that one of the amputees with whom I spoke held up the specter of the disabled lesbian as proof of the necessity of the amputee/devotee community. Too many women with disabilities, she explained, have become lesbians because they have been unable to find suitable male partners. She believes that if such women were to meet male devotees, they would no longer be "forced" to turn to lesbianism in order to find healthy relationships. Her comments echo the wider cultural assumption that all lesbians are failed heterosexuals. Although such beliefs are not unique to the amputee/devotee community, they do suggest that the community may only be empowering to some women with disabilities. Thus, within the discourse of the amputee/devotee community, the sexuality of disabled lesbians is often ignored, pathologized, or denied.
 

Harassment and Aggression

I also want to stress that not all amputees share the experience of the devotee community as welcoming and empowering. Many women with disabilities have had frightening encounters with disability fetishists, including being followed and photographed without permission. Other amputees, including myself, have had their names and physical descriptions disseminated through the devotee community without their knowledge or consent. Although not all devotees engage in this kind of covert behavior, some have, thereby making some women with disabilities wary of the entire community. ASCOTWorld's potential as a site of disabled women's resistance must be weighed against the harassment that some women have experienced from devotees.

Although these concerns are important, and accusations of coercion and harassment should not be dismissed, ASCOTWorld's effects cannot be characterized as wholly negative. For Bennett and the female amputees of ASCOTWorld, their participation in the amputee/devotee community has radically altered their perceptions of their disabilities. Thus, for some women with disabilities, ASCOTWorld acts as a personal site of resistance, enabling them to reclaim a sense of independence and sexual agency. Although their posing for photographs and attending conferences may not fundamentally alter or dismantle prevailing stereotypes of the disabled female body, the impact that they believe such activities have on their own personal lives should not be discounted or ignored. In the words of Lolly Gibbs, "I finally felt like I belonged, that I was attractive and even sexy. I wasn't ashamed...anymore."
 
 

Bibliography:

Bruno, Richard L. "Devotees, Pretenders, and Wannabes: Two Cases of Factitious Disability Disorder." Sexuality and Disability. 15.4 (Winter 1997): 243-260.

Child, Margaret. "What are Disability Paraphilias, and Who are Devotees?" OverGround. <www.ardgrain.demon.co.uk/overground/features/theory/whata.html>.

Elman, R. Amy. "Disability Pornography: The Fetishization of Women's Vulnerabilities." Violence Against Women. 3.3 (June 1997): 257-270.

Everaerd, Walter. "A Case of Apotemnophilia: A Handicap as Sexual Preference." American Journal of Psychotherapy. 37.2 (April 1983): 285-293.

Frank, Gayla. "On Embodiment: A Case Study of Congenital Limb Deficiency in American Culture." Women with Disabilities: Essays in Psychology, Culture, and Politics. Ed. Michelle Fine and Adrienne Asch.  Philadelphia: Temple University Press, 1988. 41-71.

-----. Venus on Wheels: Two Decades of Dialogue on Disability, Biography, and Being Female in America. Berkeley: University of California, 2000.

Money, John. "Paraphilia in Females: Fixation on Amputation and Lameness: Two Accounts." Journal of Psychology and Human Sexuality. 3.2 (1990): 165-172.

Money, John, Russell Jobaris, and Gregg Furth. "Apotemnophilia: Two Cases of Self-Demand Amputation as a Paraphilia." Journal of Sex Research. 13.2 (May 1977): 115-125.

Money, J. and K. W. Simcoe. "Acrotomophilia, Sex, and Disability: New Concepts and Case Report." Sexuality and Disability. 7 (1984-1986): 43-50.

Shakespeare, Tom, Kath Gillespie-Sells, and Dominic Davies. The Sexual Politics of Disability: Untold Desires. New York: Cassell, 1996.

Storrs, Bob. "Amputees, Inc." New Mobility: Disability Culture and Lifestyle. 8.45 (June 1997): 26-31.

Waxman Fiduccia, Barbara Faye. "Sexual Imagery of Physically Disabled Women: Erotic? Perverse? Sexist?" Sexuality and Disability. 17.3 (Fall 1999): 277-282.
 
 

Footnotes:

1Personal communication, 11/25/99.
2R. Amy Elman, "Disability Pornography: The Fetishization of Women's Vulnerabilities," Violence Against Women, 3.3 (June 1997): 258.
3Gayla Frank, "On Embodiment: A Case Study of Congenital Limb Deficiency in American Culture," Women with Disabilities: Essays in Psychology, Culture, and Politics, Ed. Michelle Fine and Adrienne Asch (Philadelphia: Temple University Press, 1988), 42, 47, 60. See also her Venus on Wheels: Two Decades of Dialogue on Disability, Biography, and Being Female in America (Berkeley: University of California, 2000).
411/25/99.
511/25/99.
6Bob Storrs, "Amputees, Inc.: Amputees Pitching Products -- and Themselves -- to Devotees of Disability," New Mobility: Disability Culture and Lifestyle, 8:45 (June 1997): 28. Fascination is another organization devoted to bringing amputees and devotees together. Founded in Chicago by Bette Hagglund, Fascination hosts a huge conference once a year.
7Storrs, "Amputees, Inc.," 28.
811/25/99.
911/17/99.
10Storrs, "Amputees, Inc.," 29.
11Storrs, "Amputees, Inc.," 29.
12Tom Shakespeare, Kath Gillespie-Sells, and Dominic Davies, The Sexual Politics of Disability: Untold Desires (New York: Cassell, 1996), 74.
13Barbara Faye Waxman Fiduccia, "Sexual Imagery of Physically Disabled Women: Erotic? Perverse? Sexist?" Sexuality and Disability, 17.3 (Fall 1999): 280-282.
 


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