The Dead

263 0146-1044/00/1200-0263$18.00/0 2000 Human Sciences Press, Inc. Sexuality and Disability, Vol. 18, No. 4, 2000 The Search for Sexual Intimacy for Men with Cerebral Palsy 1 Russell P. Shuttleworth, Ph.D. 2 Exploring accounts of the search for sexual intimacy for 14 men with cerebral palsy revealed a range of issues and impediments and a complex intersubjec- tive process in their search for a lover. Yet, despite an adverse sociocultural context of disability and desirability, most of the men had experienced long- term sexual relationships. The cultivation of several aspects of self and soci- ety was noted as facilitating the possibility of their establishing sexual inti- macy with others.

KEY WORDS:sexuality; cerebral palsy; disability studies; existential-phenomenology. One of the major tasks set by the Disability Rights Movement is to work for increased access to social contexts from which disabled people have pre- viously been denied. Here, the social model of disability, in which socio- cultural environments are seen as disabling, is the theoretical linchpin in a powerful social movement. However, there is a phenomenological insight to this model that is generally not recognized in academic discussion but which nevertheless resonates existentially with our experience. In fact, from an exis- tential-phenomenological point of view, access-obstruction is experienced by the subject as a continuum of intention and felt sense. Buytendijk has pro- posed that our different modes of feeling pleasant or unpleasant signify access or obstruction to the intentional objects of our consciousness (1). From this perspective, feeling sad, depressed, happy, joyful, hopeful, hopeless, angry, 1This is an updated version of a paper presented at the conference, “Disability, Sexuality and Cul- ture: Societal and Experiential Perspectives on Multiple Identities,” March 19, 2000, at San Fran- cisco State University.

2Department of Anthropology, History and Social Medicine, University of California, San Fran- cisco. Address correspondence to Russell P. Shuttleworth, Ph.D., 6010 Sacramento Avenue, Rich- mond, CA 94804. 264Shuttleworth etc. can be directly related to how close our expectations, hopes, and desires come to being met. Working for social change within the Disability Rights Movement is one way through an organized effort that the unpleasantness of exclusion from various desired social contexts is being dealt with by many disabled people.

This is all well and good for more publicly defined contexts such as em- ployment, for example. Yet, access to interpersonal contexts such as dating and romance can also be obstructed. The difference between public and private here is that in the former if personal preference does not mesh with the ideal of equal access it is negatively sanctioned (at least at the level of public dis- course), yet personal choice is considered mandatory for the latter. In love, personal prejudices reflecting social attitudes toward and cultural meanings of disability and hierarchies of desirability are thus given free rein. Access to this interpersonal context for disabled people thus cannot rely on the rule of law or public policy. As one of the participants in the research I recently conducted so eloquently put it, “I don’t give a flying fuck about the ADA because that’s not gonna get me laid!” In this paper, I explore the search for sexual intimacy for 14 men with cerebral palsy who live independently in the San Francisco Bay Area. I con- ducted a series of modified life history interviews with these men, 148 in all, especially focusing on their history of interpersonal encounters and the ways in which they attempted to establish intimacy and sexual relationships with others.

I noted the details of these attempts, their successes and failures, what they thought were impediments and what they thought helped. I kept an eth- nographic journal while living with and working as a personal assistant for one of the men, a longtime friend, and also included notes from time spent socializ- ing with several other men in the study. I also interviewed 17 relevant others such as wives, girlfriends, ex-girlfriends, parents, siblings, personal assistants (PA’s) and physical therapists for their perspectives on these men’s sexual situa- tion. The 14 men who make up the primary sample were between the ages of 18 and 51 when I began interviewing them. All of the men live independently in the San Francisco Bay Area. They all have some degree of mobility impair- ment: 11 men use wheelchairs, one man uses crutches and two men limp when they walk. Eleven have speech impairments, and four of these use augmentative communicative devices such as an alphabet board or computer with speech output. Eleven men were white and three were black. Twelve men were hetero- sexual, one man was gay, and one man was primarily heterosexual but had experienced several short affairs with men.

The primary questions I focused on were initially oriented by my readings of the stigma literature, especially the anthropological research (2,3,4,5,6,7,8), but then increasingly by existential-phenomenological concerns (1,9,10,11,12, Sexual Intimacy for Men with Cerebral Palsy 265 13,14,15,16,17,18,19). 3 As I got deeper into the interviewing, first with my friend and then with several other men, I began to get a sense of their existen- tial contention with certain issues. I first wanted to find out what these men felt were the range of issues in trying to negotiate and establish sexual intimacy with others. Then, I wanted to move on to address their contention with these issues and barriers. Lastly, I wanted to find out what aspects of self and society helped them in some cases to facilitate the establishment of sexual relation- ships.

SOCIAL AND CULTURAL ISSUES AND IMPEDIMENTS Although most of the men experienced sexual relationships one or more times in their lives, all of them also mentioned plenty of difficulties. I discerned these issues through an analysis of both topics and themes in subjects’ accounts (25,26). Significant issues included: •Socio-sexual isolation during formative years: Even in mainstream situa- tions, these men experienced isolation from adolescent social contexts in which youths’ sexual identities are being formed and when the learning of flirting etiquette is taking place. This often affected their ability to negotiate sexual intimacy as young adults.

•The parent factor: Parents almost uniformly sent negative messages to disabled children and adolescents about their possibility of a sexual life and marriage as adults. Even parents who were supportive in every other way fed into this exclusion, albeit often from the need to protect their son from the heartache of what they saw as future rejection.

•Lack of sexual negotiation models for disabled people: These men be- moaned the fact that there are no models in the media and few in every- day life that show disabled people how to negotiate romance and sexual intimacy with others. This would include a lack of disability and sexu- ality education and counseling while growing up.

•Cultural ideals of attractiveness: A major impediment mentioned by par- ticipants was our society’s ideals of attractiveness, which are most ex- plicitly conveyed via the media. Most felt that these unattainable ideals clearly affected their possibilities in establishing sexual intimacy with others. 3In 1995–1998 I began exploring existential-phenomenology’s relevance to disabled people’s sexual lives in a series of paper presentations (20,21,22). In 1997 Hughes and Paterson advocated for adopting a combined phenomenological and post-structuralist approach in disability studies (23).

However, it wasn’t until their more recent article that they began to seriously flesh out their important phenomenological perspective (24). 266Shuttleworth •Body image: Our society’s ideals of attractiveness and social expecta- tions of normative functioning and control often contribute to a negative body image. In fact, all but one of the younger men in the study ad- mitted to having a poor body image at one time or another.

•Embodied responses: There were five men who told me that they experi- enced bodily responses to the evaluative gaze of the non-disabled other in the context of negotiating sexual intimacy or in sexual encounters themselves: the exacerbation of spasticity or dysthargic speech, or the manifestation of more serious embodied responses such as hyperventila- tion and breathing difficulty.

•Friendship: For some of the heterosexual men, friendships with women occasionally blossomed into sexual relationships. In fact, this is the ave- nue that almost all of the men see as offering the best potential for a sexual relationship. Yet, paradoxically, friendship is often experienced as a painful barrier and seen as symbolizing their asexuality. When they try to move a relationship with a female friend to a more romantic and sexual place, she will most often say she just wants to be friends.

Social Expectations of Normative Functioning and Control I want to delve a little deeper into several other significant issues in order to give a sense of how research participants experienced and interpreted what they often perceived to be barriers to negotiating and establishing sexual inti- macy with others. The majority of men referred to the difficulty that they had with meeting social expectations of normative functioning and control. David, 4 a man who uses an electric wheelchair and has a significant speech impairment, told me, “We fly in the face of this society’s emphasis on being in control of one’s self.” These men feel that negative evaluations in terms of some aspect of control or functioning have more potential to disqualify them within the context of trying to establish sexual intimacy with others than in other areas of life.

Dirk, who also uses a wheelchair and has a speech impairment, had this to say:

D: I think that all relationships are sort of grounded in unconscious— each person brings certain things to that relationship, one of those things is physical autonomy or, whatever phrase that you want to use. I think that one of the things that, this is something that I’ve speculated about before, one of the things that makes it difficult for many people to have a really intimate relationship with a person with a substantial disability is that on some level, the person with a disability is a child.

R: Is or appears?

4All names used in this paper are pseudonyms. Sexual Intimacy for Men with Cerebral Palsy 267 D: Well, developmentally, physically because they don’t have this— they’re operating physically on the—not as person, as a being, as a physical being, they don’t—they’re operating on the level of a kid; of an eight-year-old, of a five-year-old. If you can’t go to the bathroom, if you can’t feed yourself, if you’re uncoordinated, if you’re not graceful, those are all attributes of a little kid. Again, I don’t think that people are necessarily aware of this stuff consciously but I think that there’s a certain discomfort with the idea or, the reality of associating your intimate self with—the intimate self with someone else who isn’t where you’re at. Because intimacy, part of what intimacy is, is kind of sending the sort of outer, sort of formal self so that your inner—what I call your child self, can come out. That’s what makes intimate relationships special, I think.

Two types of social expectations are normative mobility and communication. 5 Expectations of Normative Mobility All except a couple of the men thought that mobility was an issue in trying to establish a relationship with someone or even for connecting in more casual sexual encounters. Those who used wheelchairs often put it in terms of women being turned off by the fact that they were in a wheelchair. The following quote from Ross, a man who has a slight limp, shows how the issue can play out for more mildly impaired men:

Ro:I’ll be at a party and I’ll be sitting there and then you know, someone will start flirting with me or whatever. And it’s all good until I go and get up and get a beer. And sometimes I’ll do it on purpose, like if it’s someone that I am actually interested in, I’ll do it on purpose.

Like I won’t even need a new beer but I’ll find some reason to get up because I am kind of putting them to the test.

R: So this has happened a number of times in this situation?

Ro: Yeah, I definitely think I could have had a lot more sex with a lot more people, except for the fact that they disappear on me. I don’t think it was for lack of interest initially, I think a lot of occasions when I could have had sex or whatever, have been sort of changed by their . . .

R: Perceptions? 5In Hughes and Paterson’s phenomenological schema, mobility and communication would be con- sidered two carnal contexts of meaning structured by non-disabled embodiment. The non-disabled structuring of these contexts of meanings is exclusionary, not taking into account disabled people’s carnal information (24). 268Shuttleworth Ro: Yeah, their perceptions. They’re realizing that I have a disability and when I am just sitting there they don’t know.

In the next quote notice how comparison to normative mobility has af- fected Jim’s body image, which directly impacts his attempts at establishing intimate relationships:

My body image comes directly in my face when I’m dealing in some kind of relation- ship with a woman. It comes up a lot, so much. Because once again I put pressure on myself saying if I like a woman, I would say how can she like me with my weird ass fucking body and the way I walk. I can go out and lecture and I can do whatever; I do that stuff really good, but when it comes to relationships then that’s the dark side of me. Expectations of Normative Communication All but two of the men with speech impairments, at one time or another, have felt that communication presented a barrier to developing intimacy and sexual relationships. For example, listen to what Josh, who uses a head pointer and alphabet board, says:

J: It is like I’m trapped inside this body that doesn’t work.

R: Some things work.

J: Russell, you know what I mean. I want to charm girls with my personality, because I know I could . . .

R: Feeling trapped—how do you cope with that?

J: I really do not know. . . . When I go to campus, I see so many girls that I would try to talk to if I could.

R: And you don’t think it would work to approach them with your board?

J: No. That is why I said it is like I’m trapped.

R: Not being able to speak to them?

J: Yes, it drives me nuts because I think I am a really nice person, but most people will never get to know that.

Bob considers his dysthargic speech and bodily difference in relation to body image as a major reason for his rejection:

R: So, body image is still a struggle?

B: Always will be because of the way people look at you. I mean you want to be accepted by the mass majority and being rejected by the mass majority is a major problem. You’re rejected because you talk differently, because your body is in a strange position, those are the two major points of acceptance, of being accepted. Sexual Intimacy for Men with Cerebral Palsy 269 Expectations of Masculinity Another barrier for these men is our society’s male gender role expecta- tions such as putting an arm around a date, initiating a kiss, etc. Josh muses: It is funny because if a girl came up to me, would I know what to do? Like I do not kiss very well. Or because my arms are down here [by his sides], I cannot very well try to hold her hand. So what the hell do I do? During another interview, he said: “I think women like to be touched and hugged; I cannot very well do that. It drives me nuts.” An ex-girlfriend of one of the participants, a man with limited use of his arms said that she was dissuaded from continuing her relationship with him by the social pressures that cast him as an unattractive mate. One example being the comments of her friend, who asked, how could she stand being with a man who couldn’t put his arms around her? In Bourdieu’s terminology, men and women incorporate a gendered habitus involving gender specific dispositions and bodily practices—culturally constructed, female and male ways of being- in-the-world and of inhabiting the body (27). People with cerebral palsy typ- ically cannot embody gender in some of these ways. In terms of trying to establish intimacy and sexual relationships, you can see how these men feel it affects their sexual situation.

ANALYTIC AND INTERPRETIVE CONCEPTS I now want to briefly describe the analytic and interpretive concepts that I employed to make sense out of these men’s contention with adversity in their search for sexual intimacy.

Intersubjectivity In using the term intersubjectivity, I want to convey the notion that our immediate felt sense of interactions with others is not only affected by others’ overt actions (what people appear to actually say and do) but also by their im- plicit, unspoken evaluations and judgements, which are often manifested in their body language, facial expressions, and negative resistance to our intentions. For example, someone may tell us something, but we sense that this is a facade and that they in fact mean the opposite. How we affect each other in the immediate moment before we step back to reflect, pulls the Cartesian subject out of the constituting mind and into the interaction itself as an intercorporeal phenomenon (17,18). Thus, rather than being separate subjects, we inhabit an intersubjective world comprised of both explicitly and implicitly conveyed meanings. 270Shuttleworth Embodied Sensitivities Embodied sensitivities are the result of habitual interactions with and re- sponses (and non-responses) of others in particular context within an implicit background of cultural images and meanings—in this study the images and meanings of disability and desirability. This was an orienting concept for what I seemed to be getting from some of my early interviews: research participants were using metaphors such as “I feel blocked” and “trapped” in reference to not being able to make romantic advances. I saw these metaphors as expressions of an embodied sensitivity to their socio-sexual situation (1,17,18).

Intentional-Felt Sense Structures As mentioned, our different modes of feeling pleasant or unpleasant sig- nify access or obstruction to our intentions (1), that is, our feelings relate di- rectly to how close our expectations and desires come to being met. For exam- ple, we might become sad or angry if the object of our intentions, a person we wish to become close to, ignores us. I mapped the intentional-felt sense struc- tures in subjects’ accounts to give me an understanding of subjects’ feelings in the face of what was often others’ negative resistance (1,13). I especially wanted to see the ways in which men emerged from their feeling states.

Lived/Integrative Metaphors I also looked for lived or integrative metaphors in these men’s accounts.

As anthropologists such as Becker (28), Low (29), and Kirmayer (30) have shown, metaphors often mediate between lived experience and social processes and cultural meanings. Jackson talks about lived or integrative metaphors, met- aphors that in some sense refer to embodiment, as disclosing “the interdepen- dency [and unity] of body and mind, self and world” (15, p. 9). For example, when one of the men kept telling me “I feel blocked” from even attempting to approach a woman or to negotiate a date with a woman, I interpreted this as simultaneously expressing his implicit comparison to hegemonic ideals of at- tractiveness, an embodied (felt) sense of the others’ negative resistance to see- ing him in a sexual light, and the grip that both of these had on his self-agency.

Epiphanies or Turning Points Social scientists in Western societies have noted that epiphanies or turning points often emerge from crisis situations and “have the potential for creating Sexual Intimacy for Men with Cerebral Palsy 271 transformational experiences for the person” (31, p. 15). While similar to the “Aha!” experience that Kasnitz notes as a turning point in her study of leaders in the ILDR Movement (32), the epiphanies noted in this study are much more concerned with the sense of one’s self in relation to one’s sexuality.

INTERSUBJECTIVE MODES I now want to explore the general process of intersubjective engagement for the men in this research, that is, their contention with the adverse symbolic and structural context of disability and desirability—a context that attempts to render them in myriad ways as asexual beings—which is often communicated via the negative resistance or rejection of desired others. Analysis of these men’s accounts in terms of the above analytic and interpretive framework, re- vealed three general modes of intersubjectivity in contending with adversity in their interpersonal attempts to find lovers: 1) a mode in which participants feel immobilized; 2) a mode in which participants risk rejection and attempt to find a lover; 3) a mode in which participants disengage from the context of trying to negotiate intimacy. This schema should he viewed as a dynamic process. All but the least significantly impaired man and a couple of the younger men had moved through these modes and sometimes back and forth especially between the latter two in the course of their lives.

Immobilization Some of the disabled men whom I interviewed said that although they may desire to negotiate a casual relationship or friendship in the direction of ro- mance and sexual intimacy, they simply cannot act on their intention. One man likened it to emotionally “freezing up.” Disabled men who feel intersubjec- tively immobilized in this way are characterized by a high internalization of the dominant cultural norms of functioning, ideals of attractiveness and desirability and gender role expectations. In fact, for most of these men, this may be an initial way of contending with their sexual situation. As mentioned, they gener- ally have no or little adolescent experience in the interpersonal etiquette of flirting and dating and there are minimal societal models that inform disabled people how to negotiate sexual intimacy with others. It is thus difficult for them to envision themselves establishing a sexual relationship with another, albeit this is what they might desire. Listen to Carl: . . . that’s the paradox of my psyche because in one respect I sincerely desire to have sexual contact with a female, but on the other hand I can’t imagine myself doing it. So as much as I might want to do it, I think if there was a naked woman standing in front of 272Shuttleworth me and she was like, okay I am here, you can have sex with me . . . I wouldn’t do it because I would be scared shitless, I guess because I have never had the little steps that you have that lead up to that point when you are growing up: Like you have a girlfriend, you have a first kiss, you go on a date. Yet, these men also sense that others do not respond to them as sexual beings in their everyday encounters. Their sense of being desexualized by others ipso facto provides them with evidence of their lack of masculinity, as a quote from Josh exemplifies:

J: It is like I don’t have any maleness.

R: Do you really have a lack of maleness?

J: Women see me as asexual.

R: When do you feel a lack of maleness? At what times?

J: I see how girls look at me and treat me. When girls talk to me they do not seem interested in that way. . . . The feeling they give off. I feel blocked. I know I do not stand a chance. They just want to be my friend.

Frustration, anger, and sometimes hopelessness are common feelings that these men experience as their intentions are felt as blocked before they are even voiced. As mentioned, this felt blockage is comprised of their own comparative engagement with ideal images of masculinity and desirability, the desexualizing context as such which is often implicit in others’ demeanor towards them and the grip that these influences have on their self-agency. 6 Extreme cases of immobilization can result in the gradual closing off of sexual feelings. Carl speaks again:

I have sort of blocked off that sexual part of me. I don’t become stimulated as easily just because—it’s almost like it’s shut down. . . . I can find a woman attractive but whereas before . . . I could easily become aroused . . . there’s almost like a shield now. So I have almost constructed for myself a barrier . . . It is as if Carl’s intention for intimacy and sexual relations, his sexual self- agency and bodily desire, not finding a conducive interpersonal context, is thwarted before it can even be fulfilled in his imagination. The shield he refers to not only separates him from his sexual feelings, but also blocks him from imagining even the slightest possibility of establishing a sexual relationship with someone.

Burying one’s self in school or a career or claiming indifference to their closed off sexuality are typical ways of contending for the disabled men who felt immobilized during interpersonal encounters. Even though it is the others’ evaluative gaze that they believe sets in motion their feelings of asexuality and lack of masculinity, these men’s metaphors can nevertheless also focus on as- 6The intersubjective blockage of Josh forms the basis of a previous paper (33). Sexual Intimacy for Men with Cerebral Palsy 273 pects of themselves as quashing their intentions toward intimacy. Jim, for ex- ample, referred to this as the “rising up” of the “dark” or “weak side of me,” or Carl, in the quote above, emphasizes his own construction of the barriers that block his agency.

Engagement Some men, however, are never immobilized to this degree and others man- age to eventually become intersubjectively engaged. While dominant cultural images of desirability and attributions of asexuality may still loom, they have come to understand that the possibility of actual rejection must be faced. Nega- tive resistance to or rejection of their desires and advances is common, which often leads to feelings of frustration, anger and emotional pain. Thus, alternat- ing periods of engagement and social withdrawal in searching for love are typi- cal. When describing unsuccessful attempts to negotiate intimacy, the meta- phors that these men use often point less to their own self-agency as being blocked and more to the other as thwarting their negotiations. For example, Jack lamented: . . . after I get to know them better and they know me, I will try to make certain advancements and a wall will come; and that’s when I get very mad and angry because I don’t understand the purpose of that wall, and I don’t believe that I’m moving too fast or anything, but I’m often surprised at how fast that wall comes up. In this instance, one can quite clearly see how becoming angry, Jack’s emo- tional reaction, reveals the frustration of his intention, a denial of access to that space of possibility for an intimate and sexual relationship with another.

Epiphanies of engagement point to a gradual building of confidence, a willingness to try new approaches, and a toughening of one’s self in the face of one’s circumstances. Dirk said, “. . . it seems to me that my life has been a gradual ascendency, more and more confident.” Brent stated that, “. . . when I started becoming sexual, in my early twenties, I was very shy and I’m still very shy. The difference is, when I was that young, I didn’t really know about as much or have access to these kind of personal ads and the computer thing and I mean in that sense I’ve become more aggressive and outgoing.” Jack has also changed:

J:I’m a lot more bolder now. I think I’m more willing to take a chance.

R: So, when you were say in your twenties and even early thirties, you were not as bold?

J: Probably not. I think a lot of it has to do with having or going through hard times where I find out that the girl doesn’t like me as much as I like her. l think I have been through a number of situations like that. I 274Shuttleworth think it made me stronger. And at the same time, kind of numb because I feel I will never let myself get that bad.

R: So, we have two notions here one of strength and the other of numbness.

J: Yeah, but it’s a good numbness; it’s kind of like protection around the heart. Like I will never let anybody get to me the way that they did. In other words, I will always have my guard up, and I will never let anybody into my inner sanctum of my heart, if that makes sense.

Disengagement Bob and I were in a popular East Bay restaurant and pub talking about his previous sexual encounters and relationship history when he pointed to the cocktail waitress across the room:

B: You see this blonde waitress?

R: Yeah.

B:I’d be interested in her, but I know where her brain is. She looks like an interesting girl, but I know what she’s looking for. Now 20 years ago, I would have gone up against a brick wall and tried it, but why frustrate yourself, that’s the thing. You see that she’s cute, but she doesn’t see the reverse. No way . . . It’s like the American myth and lie: you will be happy and married, but that’s not always true. But you have to deal with it. I bet if you asked a woman, any of these girls in the room if they’d go out with a disabled man, right now—there are a total of seven girls in the room right now—I guarantee you only one out of seven would consider it. I guarantee. Why is that? Because we are not even thought of, not even considered as a viable mate. See, we’re fighting an uphill battle from the beginning, the older you get, the larger the hill gets, or the steeper the hill is. That’s the way, as they get older, they look for different things. Believe me, I’ve thought about this a long time; that’s why I haven’t dated for a while.

Bob’s comments illustrate withdrawal or disengagement from the interper- sonal context of attempting to “score a date.” Different from immobilization, disengagement appears to be foremost the desire to avoid frustration. That space of possibility in which negotiations to establish sexual intimacy with others occurs is seen as virtually inaccessible and not worth the effort and risk.

In fact, Bob told me he hasn’t dated in ten years. Metaphors here still show the other as the primary obstruction in the negotiation process. In his quote, it is the Sexual Intimacy for Men with Cerebral Palsy 275 other who Bob feels builds the brick wall. Turning points are cast in negative terms, as one learns from past failures of the futility of trying.

Disengagement can of course be of much shorter duration than ten years.

A major component is the felt sense of frustration and wanting to escape that sense, if only for a while. Dirk for example, lamented, “You get a bad response and you shut down.” One disengages and retreats from efforts at making an intimate connection with others at least for the time being.

FACILITATORY ASPECTS OF SELF AND SOCIETY Despite their difficulties, most of the men in this study have experienced long-term, sexually intimate relationships at one time or another in their lives, and there are several who have managed to consistently do this. While part of their success can be attributed to meeting lovers whose criteria are less in line with hegemonic norms and ideals, establishing intimate relationships could also depend on their cultivation of certain facilitatory aspects of self and society.

Employing Practical Strategies of Interpersonal Connection Some of these were pretty typical strategies such as flirting, participating in social activities that reflect your interests or hobbies, placing relationship ads in newspapers or on the Internet. But some drew on participants’ differences such as making the non-disabled other feel at ease, often using humor that makes light of one’s self or one’s disability. As Lenny puts it: “Have humor with yourself. . . . Don’t take yourself seriously.” Within a friendship or a beginning dating relationship, some of the older men with speech impairments said that using one’s race and body to communi- cate was very important. David said he liked to use his “puppy dog eyes” to draw the other in. Lenny claimed that much of his communication was non- verbal, especially when dates were winding down. Although he did not have much upper limb use, Lenny’s feet were incredibly dexterous, decked out as they were with several rings, and he was very efficient in using the keypad on his speech device. His favorite line was asking a woman if she wanted a back- rub.

Cultivating Supportive and Communal Contexts The cultivation of a supportive context in which one’s sexuality is ac- knowledged and encouraged could also help facilitate the establishment of sex- 276Shuttleworth ual relationships. While it certainly helps to have this kind of support early on in the family unit, or even to receive some kind of education or counseling on disability and sexuality issues, this was generally not the case for the men I interviewed. It was, thus, left up to them to discover a supportive context in which their sexuality could be nurtured. Several contexts that provided men in this study a space to work on their sexual self-esteem and sexual integration were the Independent Living and Disability Rights Movements, disability re- lated work environments, peer support from other disabled people in general, communes, avant garde artistic communities and cyber space communities such as chat rooms.

Disability related work, disability community activities, and communal liv- ing situations, such as communes, dorms, hospitals or summer camps were also places or situations where sexual relationships could develop. David, for exam- ple, told me: I think I am lucky in a way my disability prevented me from going through that bullshit of dating . . . most of my sexual and/or intimate relationships were mostly with . . .

communal living environment, i.e., the rehab hospital, camp, the dormitory . . . col- lege—getting involved with attendants. So I looked at dating, I look at most of the way I met my sexual partners, I feel very fortunate because, you got to know them because they were there, you didn’t have to do this whole ritualistic going out on a date routine.

David expresses well what held for the majority. While dating does occur, it usually develops out of a long or growing friendship. While several men have also met lovers through avenues such as singles bars and relationship ads in newspapers or on the Net, most of the men see these contexts as being fraught with the possibility of rejection through comparison to cultural images of desir- ability and normative evaluations.

Transgressing the Employer – Employee Boundary in Relationships with Personal Care Assistants In the quote above, David mentions something else that turned out to be very significant for some of the men in this study. Out of the 11 men who used personal assistants, four developed sexually intimate relationships with their assistant at one time or another, and a couple of men have experienced sexual encounters or full blown relationships with more than one personal assistant over the years. In some cases, these relationships have been very long lasting, and two men are in current relationships with women who were originally their personal assistants. Of the remaining seven men who used personal assistants, two told me they had attempted to negotiate either sexual intimacy or a dating relationship with one or more of their personal assistants; of the five others, four said they had been very attracted to a personal assistant at one time or another in their lives. Sexual Intimacy for Men with Cerebral Palsy 277 Although recognized as a relational space from which sexual intimacy can sometimes develop, the disabled person-personal assistant relation has never- theless been seen by some people in the Disability Rights Movement as fraught with the potential for exploitation and at the very least boundary confusion (34). Yet, the lack of acknowledgement given by the Disability Rights Move- ment to the relationship potential here needs to be examined more closely.

While the possibility of sexual abuse, the abuse of power, and the exploitation of women’s gender role of caring certainly exists, the successful sexual rela- tionships that developed between PA’s and the men in the current research should make disabled people think twice before closing off this everyday con- text as an avenue for romance.

Expanding the Masculine Repertoire Several disability studies scholars and researchers have noted the di- lemmas that disabled men confront in the face of our society’s hegemonic ide- als of masculinity such as competitiveness, strength, control, endurance and independence (35,36,37,38). For the men in this study, confronting the dilemma of how to be masculine when one is disabled cannot be divorced from their interpersonal attempts to establish sexual intimacy with others. That is, the di- lemma of disabled masculinity is felt most acutely in the relations with those to whom they are sexually attracted. Those men who attempted to conduct them- selves in rigid accordance with hegemonic masculine ideals and who measured themselves against these ideals were more apt to remain immobilized or so- cially withdraw when they fell short; and indeed much of the blame for their failure in love was shouldered by their inability to measure up.

Those men, however, who perceived hegemonic masculinity as less a total index of their desirability and who could sometimes draw on alternative ideals such as interdependence, prioritizing emotional intimacy, becoming friends first and not immediately pushing for a sexual relationship, allowing the other to sometimes make the first move when necessary without feeling less of a man, could better weather rejection and remain open to the possibility of interperso- nal connection and sexual intimacy. These ideals and dispositions, which are sometimes associated with femininity, thus take their place alongside more he- gemonic masculine ideals and dispositions in subjects’ psyches and interperso- nal practices. For example, note Fred’s insistence on emotional intimacy in a sexual relationship:

F: I never wanted just sex.

R: What do you want with sex?

F: Intimacy. 278Shuttleworth R: How do you define intimacy? What is it?

F: Living with people in an intimate way.

R: Close?

F: Yes.

R: What about emotions, do they come into it at all?

F: That was why I did not try hookers.

While Fred wants sex, he is very explicit about not wanting “just sex.” Defusing the Adverse Context of Disability and Desirability The possibility of establishing intimacy with others exists only if one re- mains open toward them. Those men who in some way could consistently de- fuse the negative potential of the context were better able to sustain or return to engaging with others. While participants were all able to render the adverse context impotent on occasion, there were three men who were especially adept at this, each employing a different mode of defusing. In this paper, I discuss only two of these participants.

One way to defuse the adverse context was to concede it minimal power.

While the myth of disabled people’s asexuality is acknowledged to exist in the abstract, its significance and effect in Lenny’s own interpersonal relations are seen as negligible. Lenny, who was 45 at the time of our interviews and as mentioned uses a speech device, took full responsibility for establishing or not establishing intimate relationships. While he too often suffered rejection, feel- ings of frustration, anger and emotional pain are acknowledged but not in- dulged in for long, as he always moved on in search of love and intimacy.

Married for over five years now, he has been involved in quite a few sexually intimate relationships with women over the years. Turning points for him oc- curred in terms of specific relationships and also long-term goal setting. For example, an epiphany occurring as a young teenager when he saw the neighbor girl kissing a boy in the back yard is vividly remembered, which brought into focus his need to acquire basic independent living skills for a chance to “get the girl.” Lenny used few metaphors but two consistent themes in his account were the necessity of risk-taking and paradoxically of “just be[ing] natural.” Unre- flective about this seeming contradiction, I got the sense that for him they were separate but equally important moments in the courtship phase. Being a long- time motivator in the self-advocacy movement, Lenny continually stresses the positive side of disability. For example, one of the few times he talked about disabled people facing prejudices, he added: “I feel having cerebral palsy makes a person more understanding of others because of the prejudices.” Sexual Intimacy for Men with Cerebral Palsy 279 Another way of defusing the adverse context’s power is born out of the perception that it is in fact a sociocultural construction. David who is in his mid-40s, uses a wheelchair and has a speech impairment recognizes both his own and others’ incorporation of some of its images and structures. But he understands that culture is the culprit, transforming his physical difference into a negative value. This understanding sustains him in his search for a lover. His own feelings of frustration, anger, and emotional pain are fully recognized and contended with. Major epiphanies are felt to occur which provide insight into the constructedness of his interpersonal and sexual situation and whereby a poor self-image is confronted and subverted; existential confrontation and sub- version in fact becomes a daily ritual, as he “walks through the fear” engen- dered by his image in the cultural imaginary and projects himself in the world as being “worthy of a woman’s love.” Interestingly, David’s integrative metaphors also stress “just letting go” and risk-taking, especially in the sexual arena. For example, he told me:

. . . what connects to the sexuality is you have to be a fucking cliff-walker. You need to walk always on the edge of a cliff to see all the beauty instead of the safety and security of the main road. Meaning people on the fringe—and we are—need to position them- selves not in the secure mainstream but they need to be on the edge and they need to take risks and gamble. David has established numerous relationships over the years, was married for a while, and has two children. 7 CONCLUDING THOUGHTS Foucault and others argue that the constitutive power of sex holds only for modern Western subjects (40,41,42). Sexual relations between people obviously occurred before modernity, however, according to the arguments of these con- structionists, sex has only recently become a constituent aspect of the self.

Foucault, of course, never historically ventured beyond the confines of the West and some anthropologists would certainly argue with his implying an exclu- sivity for our focus on the sexualized self (43,44). Yet, one does not have to agree with the exclusionary implications of his argument to apprehend that there does appear to be an increasingly constitutive role for sex in terms of identity and selfhood in the history of the West. In such a context, securing some kind of sexual intimacy, however defined by the individual, becomes a paramount project of self-constitution.

From this perspective, the claiming of sexuality by disabled people (45), 7Fred, the third of this trio of success stories, moved between minimizing and subversion but would skip any anguish about his situation. Aspects of Fred’s account will appear in a future publication (39). 280Shuttleworth against the cultural assumption of their asexuality, is thus also a bid for full subjectivity. This is one reason why the issue of disabled people’s sexuality has assumed such political importance in recent years (46,34). Considered in this light, the efforts of the men in this study to negotiate sexual intimacy take on a particular self-constructive urgency and meaning. The stakes are indeed high. Is it any wonder then, that although facing sexual oppression and sociocultural barriers to sexual intimacy at every turn, which can manifest as an intersubjec- tive process brimming with contention, these men nevertheless continue search- ing for a lover? And by cultivating some combination of the above aspects of self and society, most have been successful at one time or another in establish- ing sexual relationships with others. Yet, their too often difficult journey to sexual subjectivity and love means that a critical, disability and sexuality studies must remain committed to interrogating and critiquing the adverse con- text of disability and desirability that currently exists in our society. 8 ACKNOWLEDGMENTS The research in this chapter was assisted by a fellowship from the Sexu- ality Research Fellowship Program of the Social Science Research Council with funds provided by the Ford Foundation.

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