Embodying limb absence in the negotiation of sexual intimacy

Abstract

Some people with physical disabilities experience difficulties in forming and maintaining intimate and sexual relationships (Taleporos and McCabe, 2001). Individuals with physical impairments may variously be seen as inferior, ‘not up to scratch’ and can be less valued than those thought to embody the cultural ideal of ‘normality’ (Edwards and Imrie, 2003). The loss of an anatomical part such as an arm or a leg can therefore set up a complex series of perceptual, emotional and psychological responses that can limit or prevent individuals from fully experiencing the kinds of intimate relationships that many of their ‘non-disabled’ counterparts can more freely enjoy (Oliver, 1990). Drawing on a series of semi-structured interviews and a group visual workshop with five men and two women with varying acquired and congenital limb absences, this study explores the variety of ways in which sexual relationships and intimacies are negotiated and managed. Certain participants reported a great deal of anxiety regarding their perceptions of sexual attractiveness, and experienced feelings of loss of desirability as a sexual partner. Others reported engaging in an ‘active management of visual information’ about the body, through methods of concealment and exposure. Compensatory strategies were also reported as a way to effectively maintain existing intimate relationships. Finally, hyper-masculine or hyper-feminine enactments of sexuality were described within a range of social and intimate contexts as a means to ‘normalise’ the disabled body. The findings of this study provide a richer and more contextualised understanding of the highly complex adjustment process faced by individuals with limb absence, who actively engage in sexual and intimate relationships.

Keywords

Amputation intimacy limb absence sexuality visual methods

The importance of examining selfhood in relation to embodiment is now well established across the social sciences, revealing how social processes shape simultaneously embodied experiences and self concept (e.g. Bourdieu, 1984; Burkitt, 1999; Crossley, 2006, Leder, 1990). ‘Feeling good about ourselves’ has thus been argued to be intimately tied to the widely available discourses on what constitutes the ideal body/self and the techniques we are required to use to obtain it. Highly prevalent here has been the use of Foucault’s (1979) work, for instance, illustrating how the body became a central site for the inscription of power relations, social order and the negotiation of available subject positions (for a particularly pertinent discussion, see Sakellariou, 2012). Foucault’s studies of how relations of power are mediated through the body in the form of ‘anatomo-politics’ and ‘bio-politics’ have been influential in attempts to understand the inextricable link between self and body. Following Foucault, the ‘body as an object’ on which power can be inscribed has become a popular metaphor in the social sciences (Brown and Stenner, 2009). And yet examining the body as an object is not quite the same as producing an explanation of how individuals experience ‘life in their bodies’: their embodiment. Though a number of authors describe their work in terms of embodiment research, many still rely on language-based analyses of ‘body talk’ (see Ussher, 1997), as opposed to exploring the lived, felt experience of seeing the world in and through the body, and the threading through of embodiment to feeling oneself as a subject or self. Following Crossley (2006), we would instead argue that fleshly, sensuous experience of being embodied or any examination of selfhood in narrative entails an engagement with ‘reflexive embodiment’, that is ‘the capacity and tendency to perceive, emote about, reflect and act upon one’s own body; to practices of body modification [through choice or otherwise] and maintenance’ (Crossley, 2006). Here, the subject (the ‘I’ or ‘me’) and the object (the body) are the same – although of course we can experience our bodies as object-like, as Merleau-Ponty (1962) described and others since. Here, experiences of the ‘lived body’ and their relationship to social structures, practices and processes that produce power relations are acknowledged. Work on embodiment in the latter sense has argued that engagement with the perceptual experience of being in one’s body reveals, however, a more variable engagement with social processes than those described by theoretical writings on the ‘body’ as object (see Silver and Reavey, 2010). For example, embodiment research in psychology (the discipline we, as authors, are largely situated within) has found that whilst experiences of objectification are common (especially in minoritised groups), more resistant and agentic forms of subjectivity are experienced when we feel our bodies (literally) moving (through physical activity) outside prescribed norms of conduct: when we can trace the contours of both embodied compliance with social structures as well as our embodied resistance to them (Brown, Cromby et al., 2011; Brown, Reavey et al., 2008; Del Busso, 2009).

Disabled bodies and outsider sexuality: The case of limb absence

The negotiation of an embodied self arguably becomes more visible and complex when inhabiting a body that is seen as ‘non-normative’, ‘damaged’ or ‘disabled’ (Murray, 2008, 2009; Radley, 1998). According to Rapala and Manderson (2005), when a body is disabled, conventions of normative sexuality and gender are actively challenged; as Gershick and Miller (1995) argue, the experience of becoming disabled can hence lead to a crisis, or at least a renegotiation, of gender identity. Specifically, they argued that the construction of masculinity as strength was problematised by a contradictory construction of disability as weakness. Similarly, it has been argued that sexual relationships operate within the close confines of an ordered, reproductive, monogamous and heterosexual framework (Weeks, 1985), which disabled bodies can be seen to challenge (Rapala and Manderson, 2005).

This article will focus particularly on the experience of limb absence, which can be defined as the complete or partial loss of a bodily extremity, limb or appendage (Frank, 1984). Such a loss can be congenital, that is, present at birth or acquired later in life through amputation of the limb. Although the exact prevalence of those living with missing limbs in Britain is unknown, approximately 4500 new patient referrals are made to amputee rehabilitation centres in the UK each year (NASD, 2009). Whilst a significant portion of all limb amputations in the UK can be attributed to circulatory or vascular disorders, other causes such as trauma (Johansen et al., 1990), infection (Gibbons, 1987), and oncology (Tebbi et al., 1989) may also lead to limb loss. Congenital limb absence may be caused by genetic variation, or exposure to an environmental teratogen that causes malformation to the embryo or foetus (McGuirk et al., 2001) or because of a gene–environment interaction (Ephraim et al., 2003).

Whilst very little research has been carried out on the specific issue of sexuality and relationships of those with missing limbs (Goldberg, 2001), the phenomenon of the ‘devotee’, or the male who seeks sexual and romantic relationships with females who have missing limbs continues to stir debates amongst researchers and disability activists (Solvang, 2007). Much of the literature that has emerged over recent decades has tended to focus exclusively on sexual function post-amputation and the difficulties that arise because of the surgical removal of the limb, such as phantom pain (Murray, 2010), loss of libido, pain during intercourse and problematic sexual performance (Williamson and Walters, 1996). This research is based on the assumption that difficulties in performing sexual activity are affected by the type and extent of the amputation and are directly caused by the amputation itself. For example, Williamson and Walters (1996) found that for some people with missing limbs, achieving the desired sexual position with a partner can be troublesome. A number of participants in their study experienced pain when lying on top of their partner and some found it impossible to rest on their partner, while others reported difficulties in shifting from one sexual position to another and most found the stability of the sexual position to be compromised. Similarly, much of the research focuses on problematic aspects of post-amputation sexuality; according to Geertzen, Van Es, and Dijkstra (2009), limb loss induces a number of limitations in the performing of many professional, social and leisure activities. A small body of research suggests that individuals with physical disabilities experience problems in the forming and maintaining of intimate, romantic and sexual relationships (Taleporos and McCabe, 2001). Such problems may arise from difficulties in sexual performance and functioning (Whipple et al., 1996), a lack of self-confidence when initiating relationships (Taleporos, 2001) and a diversity of social factors such as negative social attitudes that view disabled people as unattractive and asexual (Milligan and Neufeldt, 2001).

Following a systematic review of amputation and sexuality, Geertzen, Van Es and Dijkstra (2009) concluded that limb loss was more likely to impact upon the sexual functioning of single people than those who were in stable relationships or married (Reinstein et al., 1978). Further, the sexual functioning of older individuals was more likely to be affected than the performance of their younger counterparts (Randall et al., 1945). Whilst most studies indicate that amputation has some form of negative impact on sexual function, others (for example Akesode and Iyang, 1981; Bodenheimer et al., 2000; Kejlaa, 1992) suggest that for those with missing limbs, sexual problems are only a minor issue. Much of the previous literature hence can be seen as viewing disabled people’s sexual difficulties as an unavoidable outcome of their impairment and focuses exclusively on an individual’s physical incapacity. Such a narrow focus in research problematises sexuality for those with limb absence, in that it places the problem solely within the individual and it fails to look more broadly at factors such as intimacy and relationships.

According to Williamson and Walters (1996) feelings of self-consciousness towards the missing limb or limbs in intimate situations is extrapolative of less sexual activity. Furthermore, Bodenheimer et al (2000) found that when a missing limb has a negative impact upon one’s sexual activity, the more likely it was for the individual to experience feelings of depression and anxiety. However, some research suggests that for those who have loving and supportive partners, sexual activity levels remain high (Murray 2010). Pell, Donnan, Fowkes and Ruckley (1993) also found that sexual satisfaction among amputees is predicative to one’s overall quality of life. Whilst the results of these studies have provided researchers with an invaluable insight into the importance of sexual function in those with missing limbs, the way that these issues are personally experienced and addressed by the individual remains a relatively uncharted territory, especially in relation to how sexual relationships are formed, developed and maintained.

Research such as this is indicative of the need for further investigation into how people with limb absence encounter and manage sexual, intimate interactions with others. Whilst the research on amputation and sexuality is limited only to a small number of studies, even less consideration has been given to those with congenital limb deficiencies. Exceptions to this include Murray’s (2008, 2009, 2010) work on the experience of prosthetics and sexuality. A further excellent example of qualitative research in this area was conducted by Frank (1984), who regales the life experiences of a 35-year-old female who was born with quadrilateral limb absence. Frank’s analysis of her participant’s experiences underlines the types of cultural demands placed upon individuals with severe physical disabilities and emphasises important themes such as ‘cultural normalcy’. These studies also serve as a powerful illustrative example of the potential of qualitative research in examining the absence of a limb and how it might affect the forming and maintaining of intimate, sexual relationships.

The research study

Given the clear and intimate link between self and embodiment, our aim in this study was to explore participants’ experiences in order to examine how participants attempted to construct the self in the context of embodied disability. To this end, a mixture of verbal and visual research methods was employed. This took the form of a visual group workshop, followed up with individual interviews, with the purpose of answering the question: How do people with limb absence manage and negotiate intimate, sexual relationships? Visual methods were utilised in response to questions raised in recent years in the social sciences as to whether verbal data alone can fully embrace the multi-layered nature of experience (Harper, 2002; Knowles and Sweetman, 2004; Pink, 2007; Prosser, 1998; Reavey, 2011; Rose, 2001). This is why, some researchers, looking at issues of embodiment, in particular, have argued that a multi-modal approach to research is needed to fully embrace how participants, feel, embody and see their experiences, in addition to articulating them, in everyday life (Reavey and Prosser, 2012). It is also argued that such multi-modal approaches provide the means to overcome some of the dualistic traps inherent in verbal approaches (where one is invited to talk about ‘the body’ as if it is somehow separate from ‘the mind’ – see Gillies, et al., 2005).

In the context of visual methods more generally, researchers have also begun to examine the benefits of introducing more creative modes of accounting within the research context. According to Gauntlett and Holzwarth (2006), for example, it can be a struggle for participants to reasonably articulate their identities in response to interview questions, and so engaging in the reflective process of creation enables individuals to express things that they might otherwise find difficult to articulate using words alone. This not only increases creativity but is also argued to promote a more agentic position for participants who are granted a more active role in the generation of data. Reavey and Johnson (2013 [2008]) further propose that the use of such visual methods also allows individuals to show the researcher their experiences and their ‘lived, embodied spaces’ rather than simply describing them. The initial stage of this project, therefore, consisted of a visual workshop where participants were asked to create a model or drawing which represented how they felt about their physical, sexual self in relation to intimate relationships with others (see also Bowes-Catton et al., 2011). This creative work not only served as a prompt in the interviews, a focal point for discussion, but also provided participants with the opportunity to think about their experiences without the pressure of being in a pre-formatted interview situation. A further benefit of creative visual methods is the potential to elide more rehearsed narratives (that potentially verbal methods alone invite) and to explore experiences as the multi-layered, contradictory and varied forms they are, with the participants as co-analysers in the workshop phase in particular (Reavey, 2011). In this sense, following Radley (1998) we would argue that the participants can actively bring their ‘world into view’, rather than respond, in more passive fashion to the researcher’s narrowly focused agenda.

Data collection

Five males and two females were interviewed as part in this research. All participants (with the exception of one female) took part in the visual workshop activity. All participants were of white, British origin, exclusively heterosexual, and aged between 23 and 51 years. The participants possessed a diversity of both congenital and acquired limb absence: three of the male participants and one female participant were missing one lower extremity following surgical removal, while the remaining two male participants were missing both right and left legs and one was also missing an arm, acquired also through amputation. The second female participant was a congenital limb-absent individual with a missing hand.

Participants were recruited via advertising on online forums, as well as through social and sporting groups for disabled people in the London area. Ethical approval was granted by London South Bank University. Copies of the individual interview transcripts were sent to each of the participants in order for them to confirm the accuracy of the transcription of the conversation.

Participants were invited to the workshop where they were asked to create a visual representation, using a variety of artist materials and magazines, that encapsulated the way in which they experience, think or feel about intimate, sexual encounters with their partners. Participant involvement in the workshop was voluntary and participants were informed that they may leave this process at any time. Before the workshop began, ground rules about confidentiality and respect were agreed, and the status of the visual artefacts to be produced was made clear: the point of the workshop was not to create something of great artistic merit, but to use the process of creation to reflect on their personal feelings or experiences of intimate, sexual relationships. It was then decided that each individual would present their work to the rest of the group once it had been completed. Other group members along with the lead researcher (RB) would be offered the opportunity to ask questions about the work, the process of its creation and the thinking behind it. One of us (RB) took part in the workshop, considering that participants were likely to be more comfortable sharing their creations as part of a co-researcher relationship. Participants were given one and a half hours to complete their work, then, in turn, explained the meaning of each of the parts of their artwork, and their reasons for constructing the model in that particular way. After a short period of time (anywhere from two to four weeks), the lead researcher (RB) visited the participants in a location of the participant’s own choosing in order to conduct a follow-up interview. Most participants chose to be interviewed in their own homes whilst two participants opted for a neutral location: a local café and a bar. The interviews lasted no longer than an hour and a semi-structured interview schedule was employed to guide the conversation. At the start of the interview, participants were reunited with the artwork that they had created previously and were probed by the interviewer more deeply about its meaning. The discussion then broadened to wider experiences of sexuality and limb absence.

Analytical approach

Because of the mixture of visual and narrative material produced as part of the research, as well as the emphasis on embodied experience, thematic analysis was employed to analyse the data. As Braun and Clarke (2006) outline, there is a large conceptual and analytical diversity across the applications of thematic analysis. They argue that most thematic analyses tend to cluster as either adopting a realist epistemology to take an inductive approach that aims to characterise the whole data set and generate semantic themes, or using a constructionist epistemology, examining specific aspects of the data using a theoretically driven approach to produce latent themes. This analysis can be seen as sitting in the second camp of thematic analyses; a constructionist epistemology was employed, assuming that the ways in which participants make meaning of their experiences would be influenced by the social context within which they live. Furthermore, it was assumed that the accounts provided by our participants were produced for the purposes of the research rather than indicating a stable representation of the individuals taking part. Specific aspects of the data set were examined, based on their prevalence and salience in addressing the research question. Whilst inductive in the sense that was based on a close reading of the data, the theoretical concerns of the project were prevalent from the outset of analysis. In terms of the visual material produced in the workshops, these were seen as visual prompts to illicit rich discursive data that incorporates the material and the embodied dimensions of the experience of the participants. For this reason, the visual materials were not analysed separately, at the risk of attributing meaning to them independently of the meanings assigned to them by our participants (see Reavey and Prosser, 2012, for a further discussion of the various uses of visual data in qualitative research in psychology).

Negotiating a loss of embodied sexuality

A concern about post-amputation romantic and sexual relationships was evident in the research interviews. It was echoed, although with different emphases, by both male and female participants, especially by those individuals who were unmarried. This may be related to the findings of research which indicates that single people experience more difficulties in maintaining intimate relationships post-amputation than do those who are married (Randell et al, 1945; Parkes, 1975). Three related themes which emerged from the data will be discussed in the following sections. The first of these is the notion of a loss of ‘wholeness’ in the body, which participants described as mediating their wider experiences of sexuality, and relationships with sexual partners. Two strategies for dealing with this sense of a defective, or ruined, embodied sexuality will then be explored. Firstly, some participants discussed ways in which their status as limb deficient was hidden or excluded from sexual encounters, in order to effectively manage the information about their ‘defective’ bodies, making choices about who they allow to view their bodies, when, and to what extent. The second strategy, which will be explored here was described as participants using normative gender roles and expectations in order to manage their experience of themselves as adult sexual beings.

Loss of ‘wholeness’: In body, sexuality and relationships

The loss of a limb was often described by participants as associated with a far wider sense of the loss of sexual desirability, and a former ‘whole’ self. The seemingly limited loss of a limb, a part of the body, can hence be seen to have been described as translating into a change in the participants’ overall experience of their embodied sexual selves, as well as their position within existing and future relationships. One participant, Nathan for instance, who is unmarried and has two children with his long-term partner, exemplified this profound sense of loss in the model he produced in the visual workshop and described his work in these words:

I remember doing jigsaws with my Nan when I was younger, and there would always be pieces missing. You know, you work so hard, night after night to get it done and then when you get to the end, there would always be a bloody piece missing. It was disappointing, frustrating, and a real let down. I suppose that’s how I felt my wife might think of me, a sort of big letdown. It’s like, you know, there’s a bit of me missing as well. Always that bit missing … and it’s the bit that always seems to, it’s all I could think about for a long time, put it that way. And it stopped me from doing so much stuff … from being intimate with my wife. (Nathan)

A single male participant, Carl, expressed a similar sense of loss in relation to his own amputation:

Something has definitely gone, but it’s not, erm, it’s not just a limb is it? It’s your pride or something like that. It is physical yeah I know, its flesh and bones, but it’s sort of more than that … it’s more. Something inside … maybe a feeling … losing something inside. (Carl)

Both of these accounts can be seen to reflect Edwards and Imrie’s (2003) claim that physical disability enforces a view on the person, that their body is not ‘up to scratch’. Further, it has been argued that people with disabilities may be exposed to values and attitudes of a society that sees them as less valuable, and inferior to those considered to have a ‘normal’ embodiment (Shuttleworth, 2000). It could therefore be argued that individuals may enter the disability arena with a skewed perspective which may lead to distress when confronted with one’s own sense of self as a desirable, sexual person. In Nathan’s account, it can be seen that such a sense of inadequacy, of his body having missing parts, or not ‘being full’, is described as rippling out into a wider sense of inadequacy in his relationship with his wife, of being a ‘big letdown’ and stopping him from ‘being intimate’. The loss of a limb, therefore, here can be seen as infiltrating multiple aspects of the participant’s sexuality, despite the limb in question being non-sexual.

Other participants similarly described a shift in their experience of desirability following the loss of a limb. For participants who were not in a relationship at the time, this sense of a loss of desirability was often described in terms of a loss of potential partners. Two single male participants, for instance, described a shift in their experience of having a sexually desirable body post-amputation:

I’ve got this, this leg missing now as you know. Sometimes, sometimes I’d get this scary, um, scary thought … what if nobody will be interested in me now. I mean, why would they be? I have a leg missing, right? I remember thinking to myself, shortly after [the amputation] what if, it might put girls off. I might see a woman that I really like or something and she just might be disgusted by it. That worried me a lot actually. Sometimes it still does. Like, how can anybody fancy me? (Jason)

One of my biggest worries, one of the things I worried about most after the operations was whether I would be able to find a girlfriend. I met my last girlfriend when I was at the [swimming] baths. I can’t ever imagine going down there again with no legs. People would just stare … but not for the right reasons. Women might look but not for the right reasons … they probably wouldn’t be attracted to me in a sexual sort of way. Maybe more like, feeling sorry for me or whatever. (Carl)

In both of these accounts, the idea of finding a potential partner is described as a source of ‘worry’, of not being ‘whole’ and is equated with a lack of attractiveness. These accounts can be seen to adhere to Shontz’s (1974) argument that individuals with missing limbs carry forward a pre-amputation body image, which is then compared (generally unfavourably) to the existing body with limb loss, or with the addition of a prosthesis or artificial limb. For Mayers, Heller and Heller (2003) a person’s inability to reconcile these multiple images of ‘self’ may result in feelings of unattractiveness and an acceptance of the self as undesirable. In these accounts, Jason and Carl imbibe their ‘new’ body with a disintegration of their level of attractiveness to others. It is notable that Carl accounts for a shift in the nature of looks from potential partners; rather than staring being seen as a positive sign of approval, here women are described as looking but ‘not for the right reasons’. The experience of these two men’s new bodies, as with Nathan’s account given earlier, can be seen as being implicated in a larger loss of sexual appeal and attractiveness, not only located within the specific body part missing.

Exclusion as a strategy for managing sexuality

One strategy described by participants to negotiate their sexuality in the wake of missing a limb, was in excluding the limb or stump from sexual encounters. One way in which such a strategy was described was in hiding the limb from view when in a romantic or sexual interaction. For instance Christina, a married woman, who was born with a missing hand, described her approach to dating situations before she met her husband:

Especially on the first few dates with a man, I would make sure I wore a dress or something with a pocket in it you know. I would feel more comfortable with my hand in my pocket. I wouldn’t have put it [my hand] on the table in front of me … I certainly wouldn’t have put my stump in somebody else’s hand … it would have had to have been behind my back or, just out of the way. (Christina)

According to Murray (2005), such concealing can be viewed by some limb-absent individuals as a very useful strategy in courtship rituals, for example, hiding the stump can allow an individual to put themselves across ‘as a person’ to their dating partners before choosing if and when to disclose their limb-absent status. Such techniques can be seen as serving as methods of normalisation, that allow the person concerned to pass unnoticed among the healthy and the able-bodied (Goffman, 1963). This can be seen as a strategy to avoid the social embarrassment associated with not living up to normative notions of health, beauty and pleasure (see also Murray, 2008). Discourses about sexuality as a source of pleasure and an expression of love, for example, have been argued to exclude people with disabilities (Tepper, 2000); a ‘don’t ask, don’t tell’ attitude towards disabled sexuality can be seen to enforce the view that the individual lacks desire, sexual need and drive, and therefore is not suitable as a romantic or sexual partner (DeLoach, 1994).

Similarly, a number of participants described their early sexual experiences and commented on how the concealing of their stump/s was important in achieving the appearance of ‘normality’ when in intimate, sexual situations. David, who has been married to his partner for four years recalls:

I wouldn’t let her see me without my clothes on … like fully naked … no way with, with the lights full up, no way … candles came in very handy. I would try to light candles before she came into the room, you know, set the mood and that … but really it was to hide my leg. She saw right through it and told me to relax and not to be so stupid. I did that I think for ages. (David)

And Christina:

My hand would always be underneath the pillow when I was laid on top of him. It was really awkward. It made things, doing it [sex] really awkward. But that would be all I could think about. I thought about it all the way through and so never really enjoyed it [sex] because of that. I couldn’t just relax and let it all hang out so to speak … I suppose I just didn’t want him to see. (Christina)

Lastly, a married female:

if I was having sex with a previous partner I don’t think I would have rubbed it [my stump] up along his back or along his shoulder … it was more under the duna [duvet]. (Beth)

In these accounts, Christina, David and Beth can be seen to be employing a variety of appearance fixing strategies that involve attempts to conceal their missing limbs, adjusting aspects of their appearance that are described as distressing. The use of candles in an attempt to adjust the lighting of a room and hiding a missing hand under a pillow can be seen as examples of such strategies; this could be interpreted as an attempt to avoid a possible rejection or sign of disgust on the behalf of their lover (Krantz et al., 2008). In these accounts, the amputated limb is described as incompatible, or disruptive, to the sexual encounters described. The lack of ‘wholeness’ described in the earlier section, is being countered here through making the ‘unwhole’ element of the body less visible, creating a picture of a ‘whole’ body during the sexual encounter.

In an even more striking account, Michael, who was recently engaged to his partner of five years, describes an exclusion of the amputated limb from the space of the bed:

I would be there … sort of just lay there with my stump hanging out the side of the bed. It was like it wasn’t my leg … it wasn’t mine, and it didn’t belong to me. I didn’t want it to either. The thought of my stump touching her body, her legs terrified me … I thought she would react badly. (Michael)

This account can be seen as describing a distancing, in real physical terms from the injury as something that potentially may jeopardise an intimate physical experience, or indeed his partner’s views of him as a suitable sexual partner. This concurs with Krantz et al’s (2008) argument that if an amputee has a poor perception of his or her missing limb, and places a great deal of importance on his or her disability, from a body-image perspective, one might expect a higher degree of anxiety. The highly intimate and sexual nature of their interactions with their partners may serve only to increase the level of attention expended on their missing limbs. The participants further describe being unable to easily remove themselves from the situation in which their partners have performative expectations of their lovers. In an attempt to meet these expectations, denial of existence of the defective limb (‘It was like my leg wasn’t mine … it didn’t belong to me’, ‘I wasn’t in touch with myself’), and its rejection from the ‘sex space’ may also be seen as a rejection of the ‘feminisation’ under which their amputations can be seen to have transformed their bodies (Sakellariou, 2006).

Displaying gender: Strategies of compensation and empowerment

An alternative way in which some participants described negotiating their embodied experience of limb absence within sexual encounters and relationships, was in either playing with, or subverting, normative gender roles. Jason, a below-the-knee amputee, described an example of how exposure of a missing limb is described as being used as a way of bolstering sexual appeal, through a ‘display’ (Radley, 1998) of a particular form of gendered embodiment:

I went on holiday with a few mates from my old work. I was worried about setting off the bleeping machines, you know, them metal detectors where you walk through at customs. It’s just a hassle really. It went off … it always does do that because of the metal in my prosthetic leg. Anyway, the customs guy asked if I could roll my jeans leg up and have a look … I rolled my jeans up to my knee so he could see. There was this really fit girl with her mate putting her belt and shoes back on next to us and she looked over and saw my leg. She was really looking at it and I kind of liked it. I think she might have liked it too. She smiled at me and I remember thinking to myself, well, I felt quite macho, like, you know, like … an action man (laughing) the bionic man or someone … I spent the rest of the holiday in shorts … I never wore shorts up until then. It feels good showing it off sometimes, you know … I get a lot of attention from girls. (Jason)

This account can be seen to describe an assertion of an agentic and powerful body in contrast to the dominant construction of the disabled body as powerless and weakened (Rapala and Manderson, 2005). In line with this, Murray (2005) writes of a number of participants, who, like Jason, engage in what he calls ‘prosthetic limb displays’ – an almost ‘militant’ approach that some limb-absent individuals employ as a method to challenge notions of disability.

Jason’s account here serves as an example of how the participant performs masculinity through the reconstruction of himself as a super hero: the ultimate action man; the indestructible bionic man; both cultural icons that can be seen as symbolic of strength, resilience and sexual appeal. It is through such ‘prosthetic limb displays’, according to Murray (2005) that limb-absent individuals are argued to actively manage the information about the body and social identity; repositioning, realigning, and recontextualising oneself in a ‘social world’ in which the dominant discourse of those who are physically impaired can be seen to be that of inferiority (Goffman, 1963). Radley (1998) also emphasises the role of ‘display’ in the embodied management of the self; the body, he argues, can be seen as an intricate signalling system and can be seen and used as a theatrical device, a prop through which individuals not only communicate ideas about themselves but also manage their social positioning and relationships with others. Indeed, later in the interview, Jason described further extending his ‘bionic’ physical appearance a year later when fitted with a new prosthetic leg:

When you go to get fitted for a leg at the [rehabilitation] centre they can make it [the prosthetic leg] look realistic, if you want it to. The outside of it can have a cover that is like skin, but it’s a bit crap really. It doesn’t look real. So I decided to have my leg without that on. I thought it would be cool if you could see the metal inside, the guts, how it all works … because that’s the, that’s the really great bit. The bionics of it … why hide it? (Jason)

Jason’s decision to dispense with the aesthetic casing of his new prosthetic limb, leaving only the mechanical tubular structure or the ‘guts’ of the prosthetic unit on show can be seen as a solution to a potential dilemma of how to be masculine with a ‘disabled’ body in the face of hegemonic ideals of masculinity (Tepper, 2000). The new leg is described as ‘cool’ and later, even ‘sexy’, and Jason goes on to describe going to great lengths to ensure the visibility of his new ‘bionic’ leg; wearing shorts at any given opportunity and even occasionally wearing it in bed during sexual activity with ‘a girl who I meet to have sex with’. The sentiments expressed here by Jason can be compared with findings from Murray’s (2008) informants, that some limb-absent individuals actively celebrate the design and use of their prosthetic limbs.

Here, Jason describes adopting a hyper-masculine, fantastical form of embodiment which could be seen to enable him, in this account, to embody, and again ‘display’ masculinity, despite inhabiting a body which, because of its missing limb, could be seen as de-gendered, feminised, and child-like (Guldin, 2000). Confronting this can be described here as having led to an extension into the realms of fantasy, transforming his ‘weakened’ body into one of ultimate power and strength.

Nathan, also described using a form of hyper-masculinity to manage his position in his marriage post-amputation. Rather than embodying a ‘bionic man’, however, Nathan described engaging in more activities, which emphasised a normative role in his relationship as the male breadwinner and provider:

I felt like I had to put more effort into proving that I can do things, get off my arse and being involved in activities. Get out in the garden, doing jobs around the house, get out and get a good job so I can bring the money in, make sure the kids were alright, provide for them, make it safe for them. It was a lot to deal with. (Nathan)

In particular, Nathan described attempting to reclaim his masculine identity by engaging in sporting activities. He described joining a nearby sailing club and took it up as a hobby, after showing no interest in the sport prior to his amputation:

I wanted to prove that I could take part in the events or whatever. Yeah, I might have a bit missing but I can still take part and still contribute … it [the missing leg] makes me more determined to do it, it’s not going to stop me. (Nathan)

Sport, which is laden with culturally sanctioned notions of masculinity (Rapala and Manderson, 2005) and in western society can be seen as a phenomenon clearly linked to physical strength, ability, sexual prowess and fitness, with athletes embodying the physical ideal of strength and the body beautiful (Shakespeare, 1994) can here be seen as allowing its participants to perform a type of hyper-masculinity. This resonates with Murray’s (2008) observation that prosthetics advertising promotes stereotypical gender roles (male active, female beautifying) as a technique to normalise the presence of the prosthetic limb. In Nathan’s account, he uses such activities, as well as normative male ‘provider’ activities within and outside the home, arguably to distance himself from a feminine and infantilised social position (Shakespeare, 1994) and form of embodiment (Guldin, 2000). Here, Nathan describes reinventing himself as an athlete post-amputation; he can be seen to be reasserting, or newly embodying, his masculinity through the activity of sport. As athletes (disabled or not) have been argued to perform within a masculine framework (Shakespeare, 1994), Nathan uses the meaning of this activity to recover his adulthood, masculinity and sexuality.

It is notable that both Jason and Nathan use an exaggerated form of masculinity, in order to recover a pre-amputation level of gender identity; this can perhaps be seen as a form of compensation, as well as a subversion of their expected ‘disabled’ embodiment. Interestingly, the female participants also described employing an exaggerated version of their gender identity. Beth, who described herself as never having been interested in being a ‘girly-girl’ before her amputation, described how she subsequently used the normative trappings of femininity:

You have to make the most of what you’ve got, don’t you? I want to be as feminine as I possibly can be for my husband. And yes, I make careful choices now about what I wear and what I don’t wear. My husband has always called me curvy and I despised that but now I suppose I try to emphasise the shape of my body … my chest and hips. I want to be attractive to him. (Beth)

Here, Beth is using normative gender grooming as part of the production of an attractive and sexualised embodiment; this could be seen as, again, a compensation for a ‘loss’ of her sexual self or a de-gendering that amputation is argued to entail (Kejlaa, 1992). According to Crane (2001), clothing is a form of symbolic communication, a way for the wearer to convey information about their social role and social standing. Beth’s description of her shift to clothing that emphasises the curvy shape of her body can be seen to conform to dominant normative conceptions about female sexual appeal (Crane, 2001). Lacking in the ability to physically embody the ‘perfect woman’, clothing may offer a non-verbal means of expressing beauty and attractiveness. This account can be seen in the light of Goffman’s (1963) argument that it is through the manipulation of such items as clothing and accessories that persons with disabilities may also emphasise other aspects of the self when concealment of the disability is not possible. When Beth describes wearing clothes that emphasise her womanly figure; her breasts and waist, or as described in later accounts, high heeled shoes to increase her height, she could be seen as providing herself with the opportunity to draw her partner’s attention to the ‘non-disabled’ aspects of her body. These ‘disidentifiers’ (Goffman, 1963) can be seen as signs that serve to disrupt an otherwise coherent picture of the participant, thus casting some doubt on the validity of her disqualifying attribution. Such a use of clothing here can be seen in a similar way to the two men’s accounts given earlier; an exaggerated form of gendered embodiment which could help to re-establish the kind of loss of a desirable sexual self described elsewhere by participants.

Rather than using the trappings of femininity to subvert the ‘unattractive’ associations of limb absence, Christina, a young woman, instead described subverting the ‘powerless’ aspects of a disabled embodiment, this time through the assertion of a more masculinised form of embodiment:

I would go out and have a few drinks and I would get this little devil that would come up inside me and on this particular occasion I went into a pub and there was a group of blokes and they were looking at my hand and one of them said ‘oh, that would make a lovely … wish my cock was as big as that’, and I shoved it through the back of his legs and another man knelt down and licked the end and the other one shouted out ‘hey girls get a load of this’ and then we got thrown out of the pub. (Christina)

Another time, with the blokes from work … they were stripping men naked to the waist, blindfolding the female colleagues and directing the female’s hands so she would say which guy it was, this was people we worked with. One girl, she didn’t really much want to do it, so what I did was I went and stood by this guy’s side, plonked my stump in his lap, grabbed her hand and then I wiggled the end of it … can you imagine, it felt like an erect penis and she screamed her head off! The rest of the pub were in stitches and it was very funny … I do like the attention it gets me … being a bit of a clown with it. I find that the fellas enjoy it and so in a way [they] are enjoying me. I have never wanted blokes feeling sorry for me because probably part of my personality doesn’t want that type of attention. Being mischievous or being the class clown was a way of bolstering myself, giving myself a platform, not that that’s a word I ever used at the time. (Christina)

Christina’s account of using her stump as a ‘penis’ in both of these accounts may be read as a defiance and transgression of the medicalisation of her ‘disabled body’ (Goffman, 1963). Rather than using a normative version of femininity, Christina can here be seen to be describing a rejection of feminisation and the assertion of powers that were perhaps denied to her through her experience of limb absence (Rapala and Menderson, 2005). Such actions might be seen as an exemplification of her position as a ‘disabled woman’ (Morris, 1996): being ‘mischievous’, being the source of laughter and comedy, and playing ‘the class clown’ can be seen to subvert dominant discourses of disability that so often burden the physically disabled with labels such as ‘lonely’, ‘sad’ and ‘don’t have much of a life’ (Newell, 1991). Instead, Christina here describes providing her audience with a vibrant, lively, humour packed, sexually charged display. Goffman (1963) argues that such acts of exposure also provide a way of reducing the fascination of others, and thus reduce the likelihood of events that might be potentially harmful to the individual such as prolonged staring. In the act of embodying the penis, a symbol of masculine power, it could be argued that Christina’s account describes subverting her potentially doubly feminised body (as female and disabled (Guldin, 2000)) and asserting a differently powerful, agentic form of embodiment. In this account, Christina explicitly links the form of ‘display’ (Radley, 1998) described, employing her stump as a tool or prop, as a way of ‘bolstering myself’ and ‘giving myself a platform’ when in the company of men. Embodying dominance and power within the social groups described here, can be seen to re-figure Christina in relation to her disability, exemplifying a powerful form of embodied self that refuses to have ‘blokes feel sorry for me’; this display can hence be seen to be counterfactual in both revealing the absent hand and simultaneously defying that absence. Like Nathan and Beth, Christina can here be seen to be describing harnessing the wider meaning of masculinity, as associated with power and strength, to resist the positioning of their disabled bodies as powerless and weak (Guldin, 2000).

Embodiment, disability and the management of sexuality

The data presented here explores a complex relationship between embodiment, disability and sexuality for our participants. Whilst, in line with some of the previous literature on limb absence, participants did talk about limb absence as at times problematic in the negotiation of relationships and sexuality, especially in the context of describing a lack of ‘wholeness’ in the body, the experiences described here were far from simplistically problematic. Strategies for negotiating a lack of ‘wholeness’, described earlier as located not only in the body itself, but permeating sexual and intimate relationships more generally, were here described as being of either exclusion or display. Furthermore, participants described using exaggerated or stereotypical gender roles and clothing to locate themselves positively within sexual relationships post-amputation. These experiences can be seen as highlighting the power of the construction of disabled bodies as being ‘relocated into the sphere of the child-like’ (Rapala and Manderson, 2005) as sexuality can be seen as a key adult embodied experience (Giddens, 1992), our participants used the strategies we have detailed to relocate their sexuality, themselves, and their bodies, into an adult, active and attractive sphere. It is noticeable that in doing so, our participants can be seen to draw on exaggerated normative scripts of sexuality and gender: the bionic man; the ultra feminine woman; the active sportsman. In the context of a body devalued both sexually and in terms of agency and activity, it can be seen that these ‘displays’ of exaggerated gender can serve to compensate for the dominant positioning of their bodies (Shakespeare et al., 1996). This can be seen as a way to generate a normative or socially acceptable outward appearance (Elliott and Frank, 1990) or to disassociate from ‘disability’ as an identity. Conversely, some participants partook in the aggressive exposure of their missing body part/s, purposefully engaging in outward, public displays that placed their bodies at the very centre of attention. This strategy can in itself act as a resistance to the implied passivity of the disabled body, a reclaiming of agency and power, which has been argued to be implicitly denied those embodying disability (Rapala and Manderson, 1996). The negotiation of embodied sexual relationships, therefore, can be an important site for the confluence of key issues of adulthood and agency which have been argued to be so critical in the management of disabled living (Shakespeare et al., 1996). It is clear from the data presented in this study, that these participants were far from ‘lacking’ in active sexual desire (DeLoach, 1994), but instead described themselves as active participants in their sexual lives, formulating embodied strategies to manage the meaning and experience of their ‘devalued’ bodies within relationships. Furthermore, the embodied approach taken here, in starting the analysis with participants’ experiences of their bodies in relationships, can also be seen to highlight how issues which have previously been identified, of the construction of adult sexuality (Giddens, 1992; Weeks, 1986) and the infantilisation of disabled people (Rapala and Manderson, 2005) were described as coalescing in participants’ active, embodied and agentic negotiation of their sexuality.

Footnotes

Richard Batty is a lecturer and qualitative researcher at London South Bank University. His central research interests focus on spatial and/or environmental influences in human activities and psychological experiences. He mainly works with young people using a variety of traditional and innovative research methods to explore aspects of identity, adolescence, family and relationships. He is particularly interested in the criminal justice services, chronic juvenile offending behaviours and family communication practices.

Laura McGrath is a lecturer in psychology at the University of East London. She initially graduated with a degree in English Literature from Newcastle University, before converting to Psychology at London South Bank University. Laura then stayed at LSBU to undertake her PhD, entitled: ‘The role of space in service users’ experiences of community mental health care’. Laura’s research interests focus on the role of embodiment, space and materiality in psychological experiences, as well as socio-cultural approaches to mental health. She also has a strong interest in qualitative methodology, especially the use of visual methods, and the role of interpretation in qualitative analysis.

Paula Reavey is Professor of psychology at London South Bank University. Her work covers social remembering, child sexual abuse and sexuality, mental distress, embodiment and space, using a variety of methodologies, including visual methods, memory work, and discourse analysis. As well as writing numerous articles, she has co-edited two volumes, New Feminist Stories of Child Sexual Abuse: Sexual Scripts and Dangerous Dialogues (with Sam Warner, Routledge, 2003) and Memory Matters: Contexts for Understanding Sexual Abuse Recollections (with Janice Haaken, Psychology Press, 2009), and a sole edited volume, Visual Psychologies: Using and Interpreting Images in Qualitative Research (Routledge, 2011). She has also published two monographs Psychology, Mental Health and Distress (with John Cromby and Dave Harper, Palgrave, 2013) and Vital Memory: Ethics, Affect and Agency (with Steven D Brown, Routledge, 2015).

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