The field of disability studies has engaged with Deleuze and Guattari’s work in a fashion almost unprecedented by other empirically oriented disciplines, perhaps with the exception of education. In this chapter, I survey work on the sociology of disability, and disability studies more broadly, in which Deleuze, and Deleuze and Guattari’s, work has provided scholars with useful resources to think through social and cultural dynamics articulating across disability. The ways disability and masculinity are formulated in relation to each other is a contentious issue, because the social construction of disability often regulates the kinds of publics that are called to engage with texts featuring men with disabilities, and the kinds of context in which men with disabilities are welcomed. Taking my cue from the preceding chapter, I do not go so far as to suggest exactly what a Deleuzo-Guattarian informed version of disability studies might look like. Rather, I show some ways that Deleuze’s thought helps us to better understand the gendered politics of the lives of men with a disability and provides insight into the social production of the gendered nature of disability as it articulates in relation to sexuality. Before undertaking my own textual analysis of popular cultural texts about masculinity and disability, I examine the gendered nature of hierarchies of disability, paying particular attention to the ways disability is implicated in configurations of sexuality. I make some suggestions about how Deleuze and Guattari’s thought facilitates new perspectives on disability, masculinity and sexuality. In so doing, I focus in on a case study of the photographer Michael Stokes’ work on war veterans. I couple this with a consideration of the 2017 Hollywood film Me Before You , which offers a popular representation of the life, struggles and death of a man with a disability. Both these texts work from the presumption that being sexually attractive, active and romantically involved has primary significance in affirming social value for men and plays the most foundational role in building men’s self-esteem.
My choice of the two examples that form the focus for this chapter was shaped by the kinds of publics the texts call to attention. Both Stokes’ photographs, and Me Before You speak to popular ideas of attractive and desirable masculinity. Most texts that position men with a disability (or with multiple disabilities) as a sexual pursuer, or the site of a woman’s heterosexual fantasy, are created for a subcultural audience. Texts such as Sick: The Life and Death of Bob Flanagan, Supermasochist (1997), or Hustler White (1996), present men with disabilities as sexually active and empowered, yet would be of interest to a very small viewing public. By ‘a subcultural audience’, or small viewing public I mean people already interested in disability rights, or sexual fetish, or perhaps (although less likely) those already living with a disability. For example, 12.6% of the North American male public live with a disability, however the representations of sexuality advanced in films such as those mentioned above will likely only appeal to those who are comfortable with sado-masochist practices and homosexuality as well as those who are interested in representations of disability. As such, the examples I have chosen to discuss here have been selected because, although for me they are problematic in many ways, they are also significant because they are designed to appeal to publics who might not have thought about masculinity outside popular hegemonic ideals and, furthermore, might not have thought about masculinity and disability at all. Positioning a man with a disability as a sexual pursuer in the imagination of these publics is a significant act. As such, despite the problems with the texts I have chosen for my case study, they are politically significant. Stokes’ photographs of, and engagement with, North American war veterans’ challenges narratives of pity directed towards men with disabilities. Stokes’ photographs present veterans as physically active, strong and sexually desirable men. While there have been some critical receptions of Stokes’ work, as I go on to show, the meta textual (or ‘big picture’) intervention made by his work into sexualised publics is of value. The war veterans in Stokes’ images are clearly sexual and sexualized subjects and they present as if they feel confident about their body and their sexuality. In contrast to Stokes’ lived engagement with men with disabilities, especially veterans, the North American Hollywood film Me Before You received broad criticisms from disability rights groups when it screened, and while I agree with existing criticisms, I approach the text as a very conventional mainstream romantic genre film, and I examine the positionality of the disabled man as the object of sexual desire as a shift for the Hollywood romance as a genre. I consider the kinds of genres and publics that are mobilised and spoken to though film in relation to disability and problematize class and gender as key themes in the text. For example, Me Before You contains clear messages about appropriate forms of (hetero)sexuality.
My reading of Stokes’ photography and Me Before You takes after Leslie Roman’s (2009) framing of media campaigns as a form of public pedagogy. Roman asks how public pedagogy and media articulates particular investments, desires and values related to your everyday understanding of invisible and visible impairments and the ways in which discourses of normalcy are taught. She considers the ‘zones of exception’ created in the hierarchy for disability rights clams and human rights struggles for women with invisible impairments. Roman goes on to highlight the much needed advancements of the disability rights movements, but shows us how women with invisible impairments face certain paradoxes and challenges. As bodies with physical impairments can be verified as disabled and therefore are seen as being “truthful” to the disabled experience, whereas invisible impairments such as neurological impairments, low level learning disabilities, mental illness, asthma, fibromyalgia, hearing loss, chronic pain, are often left out of the epistemological starting points of disability research and everyday language around disabled life and access. Using media campaigns as a source of public pedagogy, Roman explains “as forms of public pedagogy, invisible impairment campaigns articulate and attempt to construct particular notions of ‘the public and the public good’ which may serve as calls to identify with particular gender, class, racial, ethnic, dis/ability, sexuality and national bodies/minds politics. As such, it behoves us to consider their educational, cultural and political implications since notions of inclusion hinge on their understanding of whom is included in the campaigns and what the rights-based implications are that follow from their omissions and commissions” (2009, pp. 678–679). Therefore, these campaigns organise the meanings of and citizenship in the zones of inclusion/exclusion.
Roman claims that the reproduction of the hierarchy of the visible is superior to, and more credible than, the invisible and the visible also pervades the disability movement and goes beyond it. “How this hierarchical relationship is produced requires a finely-grained sociological analysis to understand its complexities. It parallels other hierarchies of skin colour and colorism or blood quantum in common-sense understandings of racialisation that produce ambivalence” (Roman, 2009, p. 679).
This article asks how public pedagogical texts mobilise particular meanings about whose bodies/minds matter or figure? How do they articulate particular affective investments, desires, and values related to our everyday understanding of invisible and visible impairments, and the ways in which discourses of ‘normalcy’ are taught? (Roman, 2009, p. 678)
The films I examine for my case study of public pedagogies of disability are imbricated in how discourses of ‘normalcy’ are taught and are very much part of the ways in which these discourses of normalcy are configured. Yet, at the same time they are partial representations of (or at the very least, gestures towards) the sexual identities and worlds of disabled men in the midst of a sea of Hollywood block busters about able bodied people falling in love, and images of muscly men without impairment that fill our public spaces: magazine stands, billboards, television commercials—the list could go on. The point that I later go on to explore as this chapter develops, is that particular modes of citizenship are activated through different publicly available texts: images and films call a public to attention and reward particular forms of citizenship. In considering Michael Stokes’ work with veterans and Me Before You , I think through the ways that Deleuze’s work on pity and affect can be used to understand how the texts operate and provide access to new ways of thinking about identity politics in film. In preparation for these case studies, I begin by thinking about disability as a gendered construct in everyday life.
Hierarchies of Disability, Masculinity and Sexuality
To do all we can do is our ethical task properly so called. It is here that the Ethics takes the body as model; for every body extends its power as far as it can. In a sense every being, each moment, does all it can. ‘What it can do’ is its capacity to be affected, which is necessarily and constantly exercised by the thing’s relation with other beings. But in another sense, our capacity to be affected may be exercised in such a way that we are cut off from our power of action, and such that this incessantly diminishes. In this second sense it can happen that we live cut off from ‘what we can do’. This indeed is the fate of most men, most of the time. The weak man, the slave, is not someone of lesser strength in absolute terms. The weak man is he who, whatever his strength, remains cut off from his power of action, kept in slavery or impotence. To do all we can amounts to two things: How to exercise our capacity to be affected in such a way that our power of action increases? And how increase this power to the point where, finally, we produce active affections? (Deleuze, 1992, p. 269)
DisHuman condition, we want to retain this complex emerging conception of disability: that transcends boundaries of impairment/disability; personal/public and self/other. Crucially, we consider disability to broaden what it means to be human; to respect but also go beyond notions of autonomy, competence and choice and to think again about the extended qualities associated with what it means to be human. Finally, and perhaps simply, our framing of disabled childhoods in terms of the DisHuman condition makes a case for thinking about childhood, culture and society in ways that contest the rigidity of what counts as human. (Goodley, Runswick-Cole, & Liddiard, 2016, p. 782)
Yet before such opening up of the ‘human’ as benchmark, indeed, as a set of limits, we find models for being that ‘cut off’ people with a disability from their power of action, by calling for them to be something other than what they are, or by comparing them to others with very different kinds of disability. The hierarchical (and gendered) organisation of disability in informal disability cultures and mainstream, ‘ableist’ cultures is discussed by a number of scholars (e.g. Gill, 2015; Kumari Campbell, 2009; McRuer, 2006, 2018; Roman, 2009) and, broadly speaking, I would argue that these are ways of cutting off people with a disability from their power of action and their capacity to be affected. I am certainly not alone in advancing this point of contention. For example, in an article published in Masculinities and Social Change called “Disabled Masculinities: A Review and Suggestions for Further Research”, Barrett (2014) identifies a number of limitations shaping the ways masculinity is constructed in the lives of men with a disability. After characterising these limited constructions as the ‘dilemma of disabled masculinity’, or the problem of trying to unite antithetical subjects (which are taken here as being disability and masculinity), Barrett argues that various disabilities and impairments potentially characterise very different (non-essentialist) relationships between men and masculinities/gender identities than research to date has been able to examine. For example, there are significant differences between acquired and congenital impairments; there has typically been a broader social research focus on the former, although not necessarily a strong rationale for why this is the case. However, this is changing.1 Barrett cites a few studies, such as Joseph and Lindegger’s 2007 examination of visual impairment and ‘idealised masculinities’ as the beginnings of change in traditional landscapes of masculinity research into impairment.
Significantly, Barrett suggests that the prevailing focus of the ‘dilemma of disabled masculinity’ misses the generative opportunity to consider how disability may add to masculinity, rather than always detract from masculinity. Barrett encourages mindfulness of how masculinities have evolved over time and quite rightly argues that these changes need to be taken up to inform the field of disability studies. Such a change will engender playing closer attention to how young men of today are rejecting typical characteristics of ‘hegemonic masculinity’ and are more often comfortable with physical affection and homosexuality. Barrett makes two points of particular interest and significance—firstly, that the seemingly accidental fetishisation of acquired injury within the social sciences has shaped inquiry into masculinity in disability studies in unnecessarily limited ways, and, secondly, that there needs to be a greater reconsideration of, and engagement with, what might constitute masculinity in contemporary cultural formations. Both these lines of address provide fruitful orientation for further studies and show how existing research on disability and masculinity, perhaps unwittingly, creates particular limits to the ways in which disabled men can be thought. Too often within such discourses, ‘masculinity’ is associated with unachievable ideals for men with disabilities.
On an emotional level, dysfunction and the discontinuity of normal life resulted in distress and anxiety. These issues and concerns affect men’s image of their masculinity as it relates to physical strength, strength as a provider and protector of the family, independence, practical abilities, sexual abilities and personal control over life. (Kvigne et al., 2013, p. 198)
It is interesting to think about this breakdown as what Deleuze calls a sad affect, as a mourning of something one does not have. He explains “out of sadness is born a desire, which is hate. This desire is linked to other desires, other passions: antipathy, derision, contempt, envy, anger and so on” (1992, p. 243). The sad affect of losing hegemonic masculinity (in the limited terms in which he had been taught to recognise it) drove John to hospital. A more expansive model of masculinity would perhaps engender less sad affect, across all kinds of disability.
The bodies of these disabled citizens could not be portrayed as ‘deformed’ or ‘defective’; rather, they were young, previously healthy, masculine bodies that had been ‘broken’ while performing their patriotic duty. (Bourke, 2016, p. 5)
This re-inscription of the wound symbolizes strength. The veteran as ‘broken’ man is much more than the sum of his parts: he is a symbolic manifestation of sacrifice. The signification of service embodied by the absence of a limb is thus imbued with particular masculine significance. In my discussion of Michael Stokes’ photography later in this chapter, I give some examples of the explicit sexualisation of amputee veterans and explore possibilities for reinscribing the prosthetic limb, and indeed the amputated limb, as a phallus.
Disability, especially acquired physical disability, is often read as symbolising sexual impotence, which is not always the case. Bourke (2016, p. 7) reminds us that for many people: “…loss of sexual function or ability were in themselves regarded as destroying a man” and situates the production of hegemonic masculinity in relation to what she calls “[t]he six props of masculinity”, namely, “appearance, economic independence, camaraderie through the sporting body, white Britishness, and heterosexuality” (2016, p. 16). Unsurprisingly, Bourke finds the six props of masculinity were “mutually reinforcing: when one or more waned, all were to some degree undermined” (2016, p. 16). There are clear links here to Connell’s foundational work on hegemonic masculinity, but as I have treated this concept in detail earlier in this book, for my purposes in this chapter I remain focused on literature specifically examining literature concerned explicitly with disability and masculinity.
The Last Leg is also highly regarded, especially across disability communities and publics, as a resource for showing how to ‘do disability differently’. That is, how to approach disability in a non-patronising, ‘normal’ way, presenting, discussing and laughing at its specificities and peculiarities – and, all in all, showing how we might incorporate disability into the warp and weave of a diverse contemporary society. (2017, p. 147)
Throughout Goggin’s analysis, he concedes that there are many elements about the show that are normative, such as its reliance on heterosexuality, ‘dick jokes’ and so on. Yet Goggin’s analysis also makes a persuasive case for some examples of how the program models ways to do ‘masculinity and disability differently’: “As The Last Leg has developed, it could be argued that masculinity and disability are woven into the hybrid format of the show – a kind of ‘new disability masculinity’, if you will” (2017, p. 149). Goggin also concedes the show’s limitations, reminding his readers that: “disability is not always synonymous with a crisis in masculinity; indeed, it can be an agent for the development of an extremely hegemonic, homosocial masculinity” (Hickey-Moody, 2015, p. 149 in Goggin, 2017, p. 153). Goggin concludes that “there is a pervasive sense in which the show struggles with the … power aspects of masculinity that make many of its transgressions rather conservative” (2017, p. 163). This is largely a reflection on the mainstream nature of the text: the show is designed as a popular television program targeting a generalist viewing public. Goggin’s analysis of the gender pedagogies of The Last Leg is astute, and the program remains significant as a public pedagogy of masculinity, as imperfect as popular media texts so often are.
We need to consider that productivist citizenship standards expecting everyone to work, as well as to work to the same ‘measure’ set unapproachable standards for productivity that actually injure people with specific impairments or simply cannot be met. This also means thinking through how inclusion in education in radical democratic terms can be framed when we have yet to uncouple the measure of successful participation in schooling and education from expectations of clear destinations to waged work. (Roman, 2009, p. 694)
Compulsory heterosexuality is intertwined with compulsory able-bodiedness; both systems work to reproduce the able body and heterosexuality. But precisely because these systems work depend on a queer/disabled existence that can never quite be contained, able bodied heterosexuality’s hegemony is always in danger of collapse. (McRuer, 2006, p. 46)
Goodley et al. (2016) explain the work that is associated with having sexuality recognized for young people with an intellectual disability, through reminding disability studies theorists that we need to ask: “in what ways can disabled young people carve out (desired) normative sexual identities and subjectivities (see Liddiard, 2012) at the same time as [they] experience and embrace disability as a productive, pleasurable and polymorphous in the context of gender and sex/uality?” (p. 776). This question necessarily has as many answers as there are opportunities for it to be asked.
With a view to better understanding sexuality, agency and the ways sexual agency is constructed in relation to disability, Goodley et al. (2016) writing on DisSexuality highlights their work with the sexual self, body, pleasures and identities of disabled people and young people, as routinely problematised, surveilled, regulated, rendered unintelligible and in some contexts deemed uncontrollable and in need of containment. The authors highlight the fact that disabled people and children are often denied access to important information relating to sexual and intimate life. They claim “It is not surprising, then, given that humanness, humanity and sexuality are so tightly bound in our cultures, that sexual normalcy subsists as a very powerful cultural and political category of which to gain entry” (Goodley et al., 2016, p. 780). Moreover, sexualized and sexualizing contexts require disabled young people to claim a sexual and gendered self, body and life which often occurs among and emotionally laborious, troublesome and ultimately precarious trajectory. In other words, becoming sexual requires a disabled being to take a disabled identity into the sexual realm, as when there are limitations to things such as “putting a condom on” the disabled sexual sphere seems out of reach to sexual education teachers that cannot come up with solutions, and therefore label these people as Dissexual, that is to say, their disability is seen as preventing their sexuality. Goodley, Runswick-Cole and Liddiard further explain that: “Therefore, DisSexual ways of being can radically disrupt normative notions of sexual humanness (Liddiard and Goodley, in press), even at times where, in our research, disabled young people forcefully asserted a (naturalised) sexual subjectivity (‘I’m a sexual being’) and made claims only for normative sexual citizenship (‘I want to be [sexually] normal’), locating their rights, access, agency and embodied experiences of sex/uality as central to their humanness” (Goodley et al., 2016, p. 781).
Feeling and enacting ‘human’ in such ways are undoubtedly rooted in lives and selves consistently devalued and dehumanised … DisSexuality draws on disability to invoke (emancipatory) posthuman modes of sex/uality which value (and celebrate) inter/dependence; queer; radical relationality, collaboration and collectivity in ways that can be emancipatory for all sexual subjects. (Goodley et al., 2016, p. 781)
We can take this position as one of many possible ways of substantiating the fact that intellectual disability is seen as being a-sexual, to the extent that sexuality and intellectual disability radically challenges popular preconceptions about what it might mean to be human. Within this context, psychiatric disability is less radically desexualized than intellectual disability. Psychiatric disability does, however, remain feminised in particular ways. For example, an incredibly interesting contemporary case study on gender and mental illness can be found in Barberis’ (2017) historical essay “Hysteria in the Male: Images of Masculinity in Late Nineteenth-Century France3” (in Phallacies: Historical Intersections of Disability and Masculinity). Barberis provides a historical perspective on the work of French psychiatrist Jean Martin Charcot who spearheaded a significant change in the understanding of ‘hysteria’. Using emerging knowledge about the brain and neurophysiology, Charcot argued that hysteria was a condition of the brain – not solely a condition of the female sex organs, as had been previously thought. Charcot diagnosed ‘male hysterics’, noting their symptoms were different to female hysterics (e.g. less heightened emotion and much more likely to be depressive). In terms of gender and masculinity, Barberis argues that while Charcot’s male patients were working class and physically strong, he nonetheless ‘conceptually feminised’ them by associating their condition with ‘lower mental functions’, as has also been historically the case with women. The other parallel he drew was to relate the symptoms of hysteria to ‘animality’, in a similar fashion to the association of women being closer to nature (an association partly carried through childbirth, menstruation, breast feeding), male hysteria was seen as making men more animalistic. Barberis argues that hysteria’s connection with a supposed lower mental state hasn’t been given enough attention in research and that social constructions of masculinity overall are deeply entwined with the history of hysteria. However, as I note above, the development of psychiatric illness after puberty does still lead to a typically more defined sense of masculinity and legitimate sexuality associated with men with psychiatric illness.
The men who participated in this research told stories about their everyday lives and relationships and many relied on what can be interpreted as traditional ideas of gender and performed hegemonic masculinity in their narratives. (Björnsdóttir et al., 2017, p. 300)
Further, and perhaps more problematically, the authors note how people with intellectual disabilities often remain eternal ‘children’ in the eyes of their families and carers4: “It is our conclusion that the participants in this research are missing out on opportunities to develop their gender and sexual identities, as well as opportunities to construct themselves as autonomous adults, which leaves them in this sort of ‘suspended adolescence’ or childhood” (Björnsdóttir et al., 2017, p. 308). The equation of sexual relationships with adulthood is performed here in the parent’s prevention of their children’s sexual relationships. These findings are substantiated by research from other locations.
For example, in the paper “From Diminished Men to Conditionally Masculine: Sexuality and Australian Men and Adolescent Boys with Intellectual Disability” (2013), Wilson, Parmenter, Stancliffe, and Shuttleworth report on their research with Australian boys and men who have ‘moderate to severe’ intellectual disabilities, and who live in supported homes. Via interviews with support staff, Wilson et al. argue for a positive conception of the “conditionally masculine”, which they define as a “uniquely male construct”. The first of these points of definition gestures towards to the positive elements of “being male/masculine” and homosocial companionship/mentorship or “male mutuality”, which the authors characterise through saying: “The notion of mutable masculinity recognised that masculinity is both shaped and limited by the effect of intellectual disability on function and capacity. That is, disability was seen as a disadvantage to being able to express one’s masculinity” (Wilson et al., 2013, p. 744; emphasis added).
Conditionally masculine is not a dichotomous proposition, it is more a recognition of masculinity on a continuum. … we proposed a salutogenic framework as the starting point for a masculinity not dependent upon power and/or normative comparisons – a construct that recognises masculinity in its many varied and conditional, but vibrant, life enhancing guises. (Wilson et al., 2013, p. 748)
Embedded, although often unspoken, within this problematic hierarchy is a question pertaining to sexual performance, gender and sexuality. The hierarchisation of masculinity that occurs in cultural forms can be mapped onto sexual life and is broadly analogous to the development and acceptance of sexual subjectivities and associated inter-subjective relations. This is made more explicit by turning to examine the literature on masculinity, disability and sexuality. Sex and gender continue to be read as co-constitutive, although years of gender studies scholarship show us otherwise, that separation between sex and gender is possible.
Sex/Ability
There is a wealth of literature examining masculinity, disability and sexuality. Broadly, the arguments advanced in this body of work demonstrate the reconfiguration of sexuality in relation to disability and, often, the redistribution of erotic landscapes of the body (Gerschick & Miller, 1995). I engage with some of this literature to give an indication of the issues and experiences that articulate in relation to sexuality for men with a disability. My method here is a survey rather than a specifically targeted approach, as I work with a view to opening up and complexifying discussions of masculinity, disability and sexuality. I am looking for ways in which the sexuality of people with a disability, or their sex/ability increases their capacity to “be affected in an infinity of ways” (Deleuze, 1992, p. 95). In “Embodying Limb Absence in the Negotiation of Sexual Intimacy5” Batty, McGrath, and Reavey (2014) discuss how people with limb absences experience their sexualities. The authors mobilise a multimodal approach of what they call ‘visual group workshops’ and interviews with five men and two women (all British and heterosexual). The ‘visual workshops’ involved participants developing a representation of how they “experience, think or feel about intimate, sexual encounters” (Batty et al., 2014, p. 691). Via what they frame as a “constructionist epistemology”, the authors argue that a core theme emerging from the research was concerned with the ‘wholeness’ of body. Unmarried participants had more concerns about not ‘feeling whole’ due to their limb absence. This feeling is described as something beyond the physical and as intrinsically related to sexuality. For example, ‘Nathan’ relayed how he worried about not being sexually attractive and letting his partner down. The authors relate these feelings to social and body norms, in which ‘disabled’ bodies are viewed as inferior and asexual. The second major theme the authors present is that of how participants use ‘exclusion’ as a strategy for feeling, and also being seen as, sexy. In other words, they attempted to hide their limbs or stumps with clothes.
The third significant theme is that of gender norms and compensation. The authors argue that some of the participants took on hypermasculine or hyperfeminine characteristics to compensate for their disability, and we certainly see this kind of overcompensation in the bodies photographed by Micheal Stokes. Especially interesting in Batty et al’s work is the discussion about ‘Jason’ who related that he liked thinking of his prosthetic leg as ‘bionic’ and showing off its metal and ‘guts’. They argue that this allows Jason to tap into ‘fantastical’ hypermasculine representations of masculinity, akin to a “superhero, action hero or indestructible bionic man” (Batty et al., 2014, p. 697), linked to strength and power. Similarly, the authors describe another male participant as using sport in the same compensatory way. There are many studies that canvass the ways disabled men recuperate masculinity through sport and through hypermasculine prosthetics and aesthetics (see Hickey-Moody, 2015). One example of this line of argument can be found in “Queering Street: Homosociality, Masculinity, and Disability in Friday Night Lights,6” (2014), Cherney and Lindemann use queer theory to analyse the combination of hypermasculinity and disability in the HBO TV show Friday Night Lights. They explain their approach as follows: “To make visible relationships among disability, masculinity, and sport … this article employs queer theory to illuminate ways of seeing athletics as visually enmeshed in and between compulsory systems of heterosexuality and ablebodiedness” (Cherney & Lindemann, 2014, p. 3).
The authors focus their attention on the character Jason Street, who is paralysed in the first episode during a football game. They argue that a combination of queer/masculinity and disability theory, along with the framework of erotic triangles [homosociality, from Sedgewick], is useful to see the complex ways in which normative able-bodiedness and heterosexuality (heterosexism) interact. For example, homosociality and homoeroticism in the show are often negated by the medicalisation and ‘emasculation’ of Street’s disability. Cherney and Lindemann make the point that it is important not to further support the gender binary in such analyses—for example, they use ‘emasculated’ rather than ‘feminised’ to argue that there is no necessarily either/or framework when it comes to the intersection of gender and disability.
Cherney and Lindemann also argue for the importance of vision. For example, although there is a lot of ‘homosociality’ and even ‘homoeroticism’ in male sport, how this is seen is carefully constructed to maintain heterosexism and normative masculinity. Examples of analysed scenes include those with the male-female-male erotic triangle (see Sedgwick, 1985), in which the presence of a woman negates behaviour that could otherwise be read as homoerotic/male-male sexual and romantic tension. Other scenes with Street, in hospital, in which there is a male-male-male triangle, use the medical context to “protect the veneer of heteromasculinity” (Cherney & Lindemann, 2014, p. 11), so that physically intimate scenes between Street and his male (and gay) physiotherapist, as well as his male friend who helps out, in a medical context “renders the homoerotic interpretation as ‘bad’ or ‘wrong’” (Cherney & Lindemann, 2014, p. 11). Another character that is analysed is Herc who is also paralysed and plays wheelchair rugby. This character represents how some men with disabilities tend to ‘heal’ their masculinity via ‘hypermasculine’ displays of misogyny, physical strength and risk-taking. Overall, the authors argue FNL does some work in rejecting ableism but, ultimately, the show demonstrates how hierarchies of ability and masculinity are strongly interrelated and reinforces the dominance of ‘hypermasculinity’ in men’s disability sport as a method of repairing the supposed fracture to gender identity caused by disability.
Turning my attention towards the intersection of gender and sexuality as articulated in sexual intercourse, in the article “‘I never felt like she was just doing it for the money’: Disabled men’s intimate (gendered) realities of purchasing sexual pleasure and intimacy7” (2014), Liddiard analyses interviews with disabled men concerning their ‘sexual stories’. Positioning her work against what she characterises as ‘radical feminist’, essentialist and ableist arguments, as well as work that positions disabled people as sexually frustrated, wronged, or sexual victims, Liddiard argues that there are many reasons why men with disabilities purchase sex. These reasons are very similar to the reasons why men ‘without’ disabilities purchase sex: gaining skills and experience, invigorating their bodies, to feel sexy, to exercise agency, to enjoy a different type of ‘care-free’ sex, to be able to participate in sharing sexual stories with male friends, and because paying for sex was easier than attempting to find non-sex worker sexual partners. Liddiard argues that the motivations to purchase sex are expressions of the “social and political positioning” of disability as they are with “discourses of hegemonic masculinity and normative sexuality” (2014, p. 849). In other words, if men with disabilities were not so feminized in popular representations, it might be easier for them to find sexual partners that were not sex workers.
While Liddiard supports a rights-based model, which is limited by failing to see what people with a disability give back to society, she does propose some critical questions. As noted above, she challenges the victimisation ‘model’ of disability which does not disrupt sexual/gender heteronormativity. Other issues raised include: how “disabled (male) sexualities are naturalised with discursive construction of commercial sex and disability” (2014, p. 850) and how access to (typical) sex work further restricts what sexual access could mean for disabled people. An alternative to the norm, Liddiard proposes, is a more dynamic, creative, collective and equitable conceptualisation of commercial sex (2014, p. 851). Such a concept of commercial sex is concerned with the ways sexual encounters increase the capacity to act of those who purchase sex. This is an active affective bodily engagement. The papers I canvass above emerge from a broader concern with disability and sexuality in the disability studies and masculinity studies literature. They show a sex/ability, mapping out ways in which sex opens up what a body is capable of experiencing, and the ways in which abilites to feel and connect are distributed across bodies and surfaces. A key premise in this body of work is that masculine gender identity is contingent on sexuality and sexual performance. Turning from established narratives about masculinity and disability to look at new ways for thinking about subjectivity, bodies and disability, I now move to look at work on disability that takes up Deleuzian concepts as frames for analysis.
Deleuze and Disability
As I suggested at the beginning of this chapter, there is an abundance of excellent material exploring Deleuze’s work in relation to disability. While this work is not exclusively focused on masculinity, it offers generative tools for rethinking disability, yet I feel there are some fruitful avenues for bringing Deleuze and disability together that are yet to be fully explored. One of the most conceptually generative thinkers in the space of Deleuze and disability is Margaret Shildrick, who has contributed an impressive body of work to Disability Studies, working from a feminist philosophical perspective, and here I examine just two of her many stellar contributions to the field. In “‘Why Should Our Bodies End at the Skin?’: Embodiment, Boundaries, and Somatechnics”, Shildrick begins with Donna Haraway’s question ‘Why should our bodies end at the skin?’. Then she draws on Merleau-Ponty’s posthumously published work The Visible and the Invisible (1968) and what she characterises as a ‘flesh ontology’ to push back against the prevailing concept of distinct entities or sovereign subjects. Shildrick argues: “Against a modernist convention of fully bounded bodies, separate and distinct from one another, such modes of corporeal transformation comprehensively undo the limits of the embodied self” (2014, p. 16).
Once it is acknowledged that a human body is not a discrete entity ending at the skin, and that material technologies constantly disorder our boundaries, either through prosthetic extensions or through the internalization of mechanical parts, it is difficult to maintain that those whose bodies fail to conform to normative standards are less whole or complete than others. (2014, p. 24)
From a Deleuzian point of view, bodies are always becoming in/around assemblages of “the affective, the political, the institutional, and the biological” (2014, p. 18). Shildrick connects this work on the body as assemblage with the idea of somatechnics (Sullivan & Murray, 2009), or technologies of embodied production. This leads to her consideration of the Paralympics and a discussion of how prosthetics are framed in relation to Paralympic competition, in which disabled people are supposed to transcend their visible prosthetics. In contrast, Shildrick’s Deleuzian framework highlights the mutual becoming of ‘technics’ in which an athlete’s body doesn’t end at the skin, nor solely express a relationship to an external prosthetic. Moving on to the concept of the ‘molar’, Shildrick also suggests that disabled people may be more likely to depart from the hegemonic/normative concept of ‘sovereign selfhood’, described as a ‘line of flight’. Shildrick links this thinking with other studies, including Feely’s work which I discuss below, noting that is important to engage “with a full range of physical, sensory, and cognitive disabilities […] to address not just how postmodernist theories generate new understandings of embodiment, but to explore how to disrupt the whole epistemological project” (2014, p. 23). Shildrick ends by highlighting the ethical, feminist, project of taking on an increasingly multifaceted conception of disability and embodiment, beyond the fiction of “self-contained individuality” (2014, pp. 24–25).
In the jointly written essay “Estranged Bodies: Shifting Paradigms and the Biomedical Imaginary” (2015), Shildrick and Steinberg introduce a special issue of Body & Society that was developed through a series of feminist workshops focused on health discourses that have developed in relation to embodiment. Shildrick and Steinberg link this to renewed thinking around embodiment, including affect theory and Deleuzian assemblages. They reconceptualise identity, the ‘self’, and estrangement, questioning how the self and other are constituted. Relating this to biomedicine, the authors note that this discipline typically characterises normative, singular bounded bodies (along with the Cartesian mind/body boundary) and disease and illness as an ‘estrangement’ that biomedicine is required to overcome. An alternative conception, proposed by Irigaray, is that the body is plural and complex. Shildrick and Steinberg maintain the contention that the assemblage is a useful concept: “the provisional coming together of disparate parts – which encourages a rethinking of questions of reconstituted, displaced and re-placed bodies” (Shildrick & Steinberg, 2015, p. 8). Consequently, in this framework, the body has no origin or endpoint and the self is “provisional and fluid” (Shildrick & Steinberg, 2015, p. 8). This is linked to issues of governance, in which self-management of health is required in return for basic health rights; the paradox being that we are constrained by forms of governance that regulate which bodies count as ‘healthy’ or not. Overall, biomedicine has opened up shifts in discourse and ‘imaginative possibilities’ of bodies and selfhood that both unsettle these subjects but also allow for ‘reactionary modalities’. What might be most important here is the focus on materiality and intersectionality, as the coming together of the matter of bodies with different political lenses again opens out how bodies can be experienced, seen, how they move and what they are capable of doing.
In a similar fashion to Shildrick’s take up of the concept of assemblages, Stephens, Ruddick, and McKeever (2014) utilise a Deleuzian framework to trouble the concept of static and distinct bodies, arguing that bodies are enmeshed and fluid. In “Disability and Deleuze: An Exploration of Becoming and Embodiment in Children’s Everyday Environments”, Stephens and Ruddick et al. consider this theoretical premise that bodies are enmeshed and fluid as both informing and going ‘beyond’ the social model of disability, offering a more ‘comprehensive’ model. They argue for critically revisiting the complicated relevance of environments and materiality, impairments and other intersections, reminding their reader that: “all subjects find themselves interpolated into different positions as a result of the assemblages they are part of” (Stephens et al., 2014, p. 212). The article reports on 13 case studies of children aged 10–15 in which their environments and ‘multiple subjectivities’ are considered. The studies included observations and interviews; a multi-method and ‘child-centred’ approach which is framed as a co-created research exercise. The authors propose their framework as a move into ‘geographic maturity’, in which disabled subjects are contextualised in their environments but also can change their subjectivities. However, in relation to Deleuzian theory, this subjectivity/agency is also troubled, understood instead as an assemblage of agencies. In order to move to what they call ‘emancipatory’ assemblages, the authors suggest using the Deleuzian-Spinozist question ‘what can a body do?’ as an ethical evaluation.
The authors consider ‘falling’ and how this is characterised very differently in the context of school and home. For disabled children, falling at home is largely unremarkable, while at school it is distressing and causes heightened concern by teachers. For one participant, ‘50 Cent’ [pseudonym], his moving between home and school involved geographic maturity, in which 50 Cent used knowledge from each environment (i.e. his independence at home is used to resist being put in a wheelchair at school for his safety). The authors consider ‘crawling’ and the complex negotiations around this form of mobility, largely characterised by normative expectations. They note that many of the children crawled at home but not anywhere else. Instead of understanding injuries from crawling and falling as negative, Stephens and Ruddick et al. understand that children with a disability “are negotiating (rationally and emotionally) a much wider set of motivations, and making decisions based on a broad set of experiential criteria” (Stephens et al., 2014, p. 205). These children are responding to ‘intolerant environments’ and possible a desire to be ‘normal’ is part of their crawling assemblage. Considering all these elements relationally is a ‘situational ethics’.9
As we might expect, children have different understanding of environments and adaptations.10 For example, some children felt negative towards ramps and special desks at school, as they were marked as ‘different’ or othered by them. However, they expected and/or were nonchalant about similar accommodations and adaptions at home or in public spaces (such as shopping centres and playgrounds). The authors carefully resist describing this as a binary, in noting that “the private sphere cannot be cast as exempt from its own normalizing strategies” (Stephens et al., 2014, p. 211). The authors make a strong argument for the utility of Deleuze’s thought when developing non-binary understandings of disability, and they offer practical examples of how to examine assemblages but also how to bring about what they call “assemblages of mutual flourishing”. Such assemblages include situations in which disabled children are not othered by accommodations and the complexities of environments/contexts along with social norms are considered together: “Our more nuanced focus on these materialities deepens theories of embodiment and provides pragmatic possibilities for action, inviting adaptations that are more responsive to the complex, varied needs and desires of disabled children in each environment” (Stephens et al., 2014, p. 198). Here, Deleuzian thought helps to activate understandings of the agency of embodied connections in the worlds of children with disabilities, showing how connections between people and things can change what a body can do.
A Deleuze–Guattarian assemblage is a heterogeneous mixture of components, both material and discursive, that work together to produce a social phenomenon (in this case, sexual surveillance and control). The aim of assemblage analysis is to explore how the phenomenon works. (Feely, 2016a, p. 731)
Feely gives an account of the material and discursive flows involved in this surveillance assemblage, which include hierarchical employee structures and service rules, sexual regulation, psychiatric discourses, public attitudes, policies, CCTV/internet, architectural spaces, and affects. He states: “In contemporary control societies, bodies are not confined to a single institutional space. Rather, a body passes between, and is a subject of, a range of open institutions (e.g. the family home, the workplace, and the university). Social control works in different ways in these conditions” (Feely, 2016a, p. 730).
Using in-depth interviews, Feely describes events that demonstrate how surveillance flows operate but also how people with intellectual disability and support staff both accept and resist these flows. For example, some staff try to prevent what they see as ‘inappropriate’ touching and sexual behaviour, watching and reporting on this, while other staff are more ‘lenient’, but then experience surveillance themselves for not following workplace policy. Feely cautions that: “In a sexual surveillance assemblage, where containing flows of data is extremely difficult, even gentle acts of resistance by staff, even being slightly more ‘lenient’ than one’s colleagues, carries with it considerable risks” (Feely, 2016a, p. 743). Feely’s aim is to provide a starting place for more in-depth consideration of the effects of such surveillance and possible changes to rules and policies, as he contends that: “… sexual narratives were found to be affected by a range of material forces …” (Feely, 2016a, p. 732). As I noted above, the sexual subjectivity of men with intellectual disability is not only highly policed but also used as a means of emasculating and controlling them. Feely (2016a) shows us this is indeed the case, taking up Deleuze’s work to better understand the momentum and modes of operation of control cultures (see also Feely, 2016b).
In “Relating Through Differences: Disability, Affective Relationality, and the U.S. Public Healthcare Assemblage”, Nishida (2017) begins from the understanding that the bodies of a person with a disability and their carers are in ‘affective relationality’ with each other. In this relationship, there is a mutual agency and capacities on both sides are enhanced. In advancing this case, Nishida is critical of neoliberal individualism and argues instead for accepting human and non-human interdependence as a ‘natural’ state. Nishida’s framework draws together affect theory and a Deleuzian idea of the body as an assemblage that is animated with haptic connection, which “goes beyond cognitive connection and involves ontological connection at the encounter” (Nishida, 2017, p. 91). Nishida explains this philosophy of the body as assemblage through suggesting that “Parts of bodies preconsciously connect, relate, and adapt to other bodies, their movements, and the larger milieu. This process involves haptic connection …” (Nishida, 2017, p. 91).
Nishida’s data analysis includes examples such as the intimacy developed between a person with a disability and long-term carers, in which they share responsibilities for a task, such as baking a cake, with little need to verbally communicate. Another example of affective relationality is how some people with disabilities will acknowledge their carers’ low income and insist on more hours and days from care agencies, and sometimes suggest their carers take this time off (while still getting paid). Along with this context-based analysis, Nishida examines the US public healthcare assemblage, noting the relationships between capitalism, neoliberalism and the structures of care exploiting and reducing people with disabilities and carers (who are often black, brown, and from low socioeconomic brackets). For example, Nishida notes that carers often work more hours than they are paid. Antonio Negri explains potestas through stating: “potestas refers to power in its fixed, institutional or ‘constituted form’, while potentia refers to power in its fluid, dynamic or ‘constitutive’ form” (Negri, 2008, p. xv). Spinoza’s concepts of potential (relationship to the world/plugging into nature) and potestas (institutional and legal, ‘fixed’ power) are useful models for understanding how social power is distributed and is articulated in relation to disability. The former helps theorists see the inherent power available to all bodies through connecting to the world at large, which, as I have noted, Spinoza also referred to as ‘God’. The latter involves the interferences in the potential of bodies (i.e. people with disability and their carers both have their agencies reduced by bureaucratic systems).
Drawing on the Deleuzian concept of the encounter, Nishida reminds us that encounters between bodies can change capacity: “An encounter is a process of collective becoming, inheriting both capacitive and debilitative potential for the encountering bodies” (Nishida, 2017, p. 91).
It is the recursive practices of care that facilitate affective relationality. The labour of both providers and recipients of long-term care let bits of their bodies reconfigure and slowly adapt to the other body and its shape, movement, rhythms, habits, and desires through repeating the same care tasks day after day. (Nishida, 2017, p. 95)11
Nishida concludes by suggesting that “There is certainly a possibility for the capacity born out of affective relationality to be subsumed into potestas, as one’s capacity is being exploited and diminished in the current public healthcare assemblage” (Nishida, 2017, p. 99). Nishida’s attention to the sad affect of bureaucratic discourses gives us a clue for further uses of Deleuze’s work. The limits of bureaucratic systems, medical and popular representations of disability can be seen as what Deleuze, after Spinoza, might characterize as a sad affect: an act that reduces a body’s capacity to act. Limited representations of disability encourage impoverished models for understanding the cultural value of people with a disability.
While I have examined many forms of disability in this chapter, there remains one burgeoning area of scholarship with which I am yet to engage and to which I now turn my attention, that is, deaf studies. In “The Rhizome of the Deaf Child” Valente and Boldt (2015) begin by problematising simplistic binaries around discussions of deafness and cochlear implants. In an imagined binary of verbal and non-verbal language, the cochlear implant is often positioned as the only way for deaf children to lead better/more meaningful lives. The authors—Valente is deaf and Boldt is hearing—position themselves as neither advocating or being against cochlear implants, but seeking instead to “envision a space where discourses about human bodies and human modes of communication as multiplicitous can flourish” (Valente & Boldt, 2015, p. 562). They propose ‘pluralingualism’ as an alternative to binary notions of languages, a ‘pluralingualism’ which incorporates the social and cultural elements of communication and does not oppose verbal and non-verbal forms. Valente and Boldt then link this with a Deleuzoguattarian “rhizomatic and relational understandings of difference and inclusion” (Valente & Boldt, 2015, p. 563). By presenting a short history of the cochlear implant, and noting its shortcomings, such as side effects, the denial of sign language to deaf children with implants and reduction of sign language in schools, the authors outline a ‘sensory politics’ which undermines multiple forms of communication and makes verbal communication ‘normative’. In contrast, they consider a ‘deaf way/epistemology’. There are many ways to be deaf, and these vary according to identities, culture, and variable tensions with normative ways of communicating.
The authors combine their Deleuzoguattarrian rhizomatic framework with Charles Garoian’s The Prosthetic Pedagogy of Art (2013), that characterises all people as impaired, dislocated and fragmented. They propose the concept of the ‘anomaly’ not as a concrete position but as a position that is mobile and shifts, like a flock of birds. Just as moving in a flock places some birds on the outer edge and others in the middle, a deaf person is often asked how and why they are deaf, how much they can hear, but a hearing person is not asked how much they hear. Through a case study of parents who sued their deaf daughter’s school for not being inclusive, the authors consider how this girl’s deafness might have been seen as an opportunity for her whole class to learn sign language and for all students to learn about communication in a more nuanced manner. This paper uses Deleuze’s thought to offer an alternative to simplistic notions of difference, to conceptualise deafness as a unique and open-ended becoming. This is just one of many examples of work on Deleuze and deafness, which also include the work of Crowley (2010) and Weber (2018), and illustrates the ways in which Deleuzian thought supports thinking through the opportunities created by disability.
The work on disability and Deleuze that I outline above provides a range of examples that help us see how Deleuze’s thought has already been taken up in Disability Studies. In what is to follow I contextualize the cultural significance of the case studies from popular culture that comprise the remainder of this chapter in terms’ of Deleuze’s idea of sad affect.
Michael Stokes ‘Veterans’; Recuperation and Refusing Pity
Positioned within the techno-militarized masculine discourse produced by the introduction of the cyborg soldier (Masters 2005), high-tech prostheses can be understood as the embodiment of techno-militarized masculinity by the maimed veteran. Techno-militarized masculinity produces a posthuman subject who maintains white male privileges, while also overcoming limitations associated with his human body. (Caso, 2017, p. 222)
…[PTSD] is feminized, policed, and marginalized because of the threat it poses to the symbolic power of the state. On the other hand, the physically injured veteran body is re-masculinized through prosthetics and, as such, can embody the patriotic discourse of state power. (Caso, 2017, p. 225)
It is compelling to remark that the homonational aesthetic regime produced in Always Loyal manipulates LGBT rights and feminist politics for the patriotic project of representing national power and western civilizational exceptionalism, but never advocates for LGBT rights, poorly addresses gendered power relations of vision, and forecloses critical debates about the militarization of homosexuality. (Caso, 2017, p. 230)
Developing a slightly different reading, in “Bare Strength: Representing Veterans of the Desert Wars in US Media”12 (2016), Pitchford-Hyde offers an analyses of how injured US veterans (and particularly those with amputations) are represented in US media. Specifically, she analyses the TV reality show Dancing with the Stars and Michael Stokes’ photography. For the former, the focus is on the inclusion in the show of veteran Noah Galloway who had his arm and leg amputated after an IED explosion. Pitchford-Hyde acknowledges both the personal, social and political complexities involved in the process of Galloway being on this show. For instance, she notes that the narrative of the ‘supercrip’ emerges in relation to Galloway, as well as the narrative of being able to ‘overcome disability’ if one works hard enough. The issues with both narratives are clearly explained, noting that ultimately they render people with disabilities as ‘less than’. Specifically, the former reveals the low expectations society holds for people with disabilities, while the latter assumes the primary goal of people with disabilities is to essentially make their impairments invisible.
In relation to Stokes’s photography of men who are veteran amputees, Pitchford-Hyde argues there is an entrenched ideal (and fetishisation) of the masculine militarised body in US culture. She suggests some issues with these photos as ‘erotic/sexualised’ representations, such as potentially being revered not because of the focus on disability but rather because they represent hegemonic masculinity. 13 Ultimately, Pitchford-Hyde argues that in Stokes’ work, the veterans are made out to be heroes; their injuries are reframed not as lack but as evidence of their ‘commitment to the state’. Its terms of affect, it seems to me that there is a certain amount of sad affect created by some of Stokes’ representations, to the extent that prosthetics memorialize aspects of the body that are now missing and re-make old bodily connections no longer automatically available due to limb loss. Yet, in what is to follow, I develop alternative readings.
Brad Ivanchan, by artist Michael Stokes
In examining another text positioned at this intersection, I turn my attention to the 2016 film Me Before You , which examines hegemony and impotence through the lenses of class and gender, and, like Stokes’ photographs, appeals very much to a mainstream viewing public.
Me Before You
The film Me Before You was released in 2016 to popular criticism, largely (spoiler alert) because the male disabled protagonist chooses to end his own life. However, while there is certainly a clear implication that life as a man who is unable to have penetrative sex is unliveable for the film’s protagonist Will Traynor, in many respects the film is about class and gender as much as it is about disability. The film begins before Will is disabled, depicting him as the epitome of hegemonic masculinity: kissing his partner in bed with a surfboard in the background and then dashing off to work at the stock market. His frontier masculinity meets an unexpected end when he his hit by a motorbike while crossing the road and is paralysed from the neck down. A classic symbol of masculinity (the motorbike) is used to seemingly take away much of Will’s masculinity. Post-paralysation we meet young Louisa Clark, a happy, outgoing, highly feminine working-class woman who lives with, and supports, her family who are struggling to make ends meet.
After losing her job at a local café because of recession, Louisa is hired as Will’s ‘companion’ in an attempt to cheer him up. Louisa has no experience with disability support, but Will’s mother believes her cheery personality and attractive body will help lift his spirits. At the point when Will and Louisa meet, Will only spends time with Nathan, his nurse, who assists with his care and exercise, and Will is cynical and depressed. Will initially reacts coldly to Louisa’s working-class style, feminised aesthetic and upbeat demeanour. After two weeks, Will has a visit from his former best friend Rupert and ex-girlfriend Alicia who reveal that they are engaged. He smashes all the photographs on his dresser in anger and indignation, which Louisa tries to repair the next day, leading to a verbal altercation during which Louisa chastises him. The next day Will asks Louisa to watch a foreign film with him, and she accepts, sitting down to her first subtitled movie. The two begin to bond and eventually become close friends. As Louisa and Will continue to talk daily, the feminised nature of Louisa’s care work and emotional labour becomes increasingly clear, and the class differences between them are explicated. Louisa’s disengaged working-class boyfriend, Patrick, is training to take part in a ‘Viking triathlon’ in Norway, a hobby that he often chooses over spending time with her. Will urges Louisa to broaden her horizons and repeatedly instructs her that it’s her responsibility to live life as fully as possible. While taking care of Will during one of his occasional illnesses, Louisa notices Will’s scarred wrists from a previous suicide attempt and realises that her job of ‘cheering Will up’ has rather dark undertones. She gradually comes to fall in love with Will, partly because of his class privilege but also because of his care, attention and sense of humour.
While at work one day, Louisa overhears an argument between Will’s parents and she learns that Will has six months before travelling to Dignitas (in Switzerland) for assisted suicide. Will refuses to accept life with a disability that entails dependency, pain and suffering without any hope for recovery of his ‘old self’ which was physically capable of quite different things, including penetrative sex. Louisa then takes it upon herself to change Will’s mind, and the implication here is that she is in love with Will, that she is trying to save him as someone who loves him rather than as someone who has been employed to improve his day to day. Louisa enthusiastically organises various trips and adventures in an attempt to show Will that life is worth living, despite his disability. Will gradually becomes more communicative and open to her plans. Eventually, Will joins Louisa’s family for dinner on her birthday in her humble family home, where they learn that Louisa’s father had lost his job in a leveraged buyout that had been organised by a younger associate of Will, working under Will’s direction. It becomes clear that Louisa being bound to provide for her family financially is partly because her father was made redundant by Will’s company. Shortly thereafter, Louisa’s father is offered the head of maintenance job at Stortfold Castle, which belongs to Will’s family, and Louisa realises that Will is trying to help her secure her freedom from her family. Their romantic feelings for one another provoke jealously in the want-to be-Viking boyfriend Patrick and cause problems in Louisa’s long-standing relationship, leading to their break-up. After attending a classical music concert, Will notes he is not ready to go inside his home yet, stating “I just want to be a man who was been to a concert with a girl in a red dress … just a few minutes more”. The ordeal of being put to bed is clearly hanging over his head, juxtaposed with his presumed desire to take Louisa to bed himself. Later, during a romantic trip to Mauritius, Will informs Louisa that he still intends to follow through with his euthanasia. He wants her to live a full life instead of “half a life” (one assumes this is a life without penetrative sex) with him. He says their time together has been special but he cannot bear to live in a wheelchair. He asks her to accompany him to Switzerland to be with him through his last moments. Heartbroken, she informs Will’s parents upon arrival in London that she is quitting immediately and travels back to her home by bus. She does not speak to Will for the days that follow. Louisa’s father finally convinces her to go to Will in Switzerland. He has already left and she joins Will in his final moments. A few weeks after Will’s death, on a holiday in Paris presumably paid for by him, she re-reads a letter Will left for her. In it he encourages her to seek out a specific perfume shop in Paris and ends the letter with “just live”, which she can afford to do because he has left her enough money to follow her dreams. One also assumes that “living” involves life not involving disability and including penetrative sex. The film is interesting because it is a Hollywood romance that is a ‘rich man meets poor girl’ Cinderella/My Fair Lady story that has a subplot about disability and masculinity. While the suggestion that life with a disability is unliveable, even for the super-rich, is incredibly problematic, it is also important to note the relative rarity of a the desirable, attractive, romantic protagonist who also has a profound disability. Will is clearly presented as a sexually desirable man, and this is unique in representations of paraplegics in Hollywood cinema. Will’s death can be seen as a form of escaping from his impotence, as he is unable to recuperate his masculinity through performance in the ways Stokes’ veterans do. I want to consider Me Before You as a form of activism, despite the fact that the male protagonist is engulfed with sad affect to the point where he is unable to live.
Ellis and Goggin (2018) offer a comprehensive overview of disability and media activism, along with a critical analysis of the transformations that have evolved from how we define and re define activism and communication within the media with regards to disability and the categories within this (e.g. Impairment). Activism through the media has been extremely important for developing public understandings of disability as a rich and significant part of human life. Many disability activist movements involve drawing attention to neglected areas of mistreatment, injustice and oppression and by making these issues visible to the public (via the media), they challenge what is seen as a “private matter” (Ellis & Goggin, 2018, p. 356). By making disabilities and the treatment or mistreatment of disabilities visible online, and through various forms of media, activists change the popular understanding of what disability is in society, and its associated (lack of) services. Disability is therefore, no longer just a “family matter”. It calls viewing publics to attention across a range of platforms and in a variety of ways. Disability Media activism involves two areas, one focusses on using media as a key tool for social change, the other looking at the media as a key site in social justice, rights, democracy and other struggles. There are many times when the media has caused people to protest because of its devaluing of the lives of people with disabilities in media content, Ellis and Goggin use the examples of Me Before You and Million Dollar Baby, both of which sparked public protest and inspired visible public outcry about disability rights. This form of activism is to be celebrated. Mainstream viewing publics had awareness raised and disability rights activists were provided with a global platform that captured media attention through the production and distribution of the film.
When we also look at media itself as a key site of struggle, disability media activists show how advances in media technologies can create exclusion as well as access. When television first came out in the 1920’s it took years to get widespread acceptance of captions or audio descriptions for the visually or hearing impaired. Ellis and Goggin note that disability media activism has gained momentum increasingly rapidly since the invention of mobile media and social media. They attribute the importance of social media in disability activism as being related to the fact that “personal narratives can be shared in such a way that enables the participation of disenfranchised citizens who otherwise would not become involved in disability activism (Trevisan, 2017)” (Ellis & Goggin, 2018, p. 358). In other words, Ellis and Goggin ascertain that persons with disabilities have the ability to use media platforms like twitter and facebook to speak about disability, and have the agency to represent themselves and their abilities in their own words with their own voice. This is an extremely important advancement in digital disability activism, as it has the ability to reach other people in their everyday lives, and therefore encourages disabled people to be the ones to shape and define what constitutes disability in modern society.
It is important to note however, that social media and media platforms in general can afford social inclusion in many cases, but it can also further disable if the platforms are not made accessible (Ellis & Goggin, 2015). However, Ellis and Goggin try not to focus on the ‘limitations’ of social media, as the disability activism that has come around since social media has made great leaps towards improving accessibility and reframing the way we define activism in general. They take up Parsloe and Holtons’ case study of the online Aspie Central community, where collective autistic identities are built and become political through online connection. They find these movements bridge and develop ‘affective publics’ and go beyond traditional kinds of activism and publics (Ellis & Goggin, 2018, p. 359).
Ellis and Goggin discuss how Shakespeare’s (1993) ‘shared identity’ is a crucial first step on the path to demanding political and social change. Through reclaiming words like “queer” and “crip” and using hashtags on digital action networks, cultural and political struggles move to the forefront of the public eye within activist groups. Therefore, even those persons with disabilities that have limited access to public spaces where other people meet and congregate over activist issues and shared identities/interests, can still actively participate in group and collection identity online (2018, p. 360).
Disability activism often involves ‘micro-political’ contexts of everyday life and other settings (Roets & Braidotti 2012). As disability has become an increasingly visible and legible force among other social, political and cultural movements, it has also challenged key assumptions of what activism is, looks like and does, and what public spheres and publics are (Garland-Thomson 2004; Clifford 2012), something that has caused consternation, division and debate within and across activism, disability activism included (Hughes 2009). (Ellis & Goggin, 2018, p. 356)
While Me Before You as a media text has a lot of problems with the ways in which it represents disability, gender and class, it drew a mainstream public to the attention of disability activists’ rage and ignited discussions about disability rights across the globe. This platform is not as broadly progressive as the other forms of social media activism that Ellis and Goggin characterise, it is, however useful to the extent that it calls a new public to attention.
Conclusion
This chapter has begun to map some ways in which Deleuze’s thought opens up thinking with, and about disability. Both the practical examples or ‘case studies’ discussed here engage broad audiences of popular culture with imperatives to recuperate disabled masculinity through sexuality and/or sexual desirability. They offer mainstream and accessible examples of contemporary texts that have: “challenged key assumptions of what activism is, looks like and does, and what public spheres and publics are (Garland-Thomson, 2004; Clifford, 2012), something that has caused consternation, division and debate within and across activism, disability activism included (Hughes, 2009)” (Ellis & Goggin, 2018, p. 356).
In theorizing the political significance of these two texts and thinking through some ways in which they mediate affect, I follow McRuer in believing that “Theory is a form of activism, too. Sometimes there’s this sense with theory, like, what do we do with it, right? I think sometimes it’s more productively thought of in the other direction: How have all these amazing artistic and political and activist efforts generated these really complex ways of thinking about norms and institutions and structures? It’s not like Crip Theory, or any other disability text, should be a handbook for a movement. Rather, in some ways, it’s a document of all of this energy that has been going for decades at this point, and it’s not showing any signs of stopping soon” (Peers, Brittain, & McRuer, 2012, p. 154).
As I have shown, Deleuze’s thought has already proved incredibly useful for the field of disability studies, yet one aspect of his thinking that offers further scope for discussion is the concept of sad affect and the ways in which pity can reduce a body’s capacity to act. Intersecting with the sad affect attached to many popular texts about disability, Michael Stokes’ work and Me Before You are both crossed by sad affect and the active affects that inspire the body’s capacity to act: they position the man with disability as holding social power and being desirable in numerous ways. This said, these constructions are also fairly conservative renditions of masculinity. They position agency within the disabled body in ways that command attention, yet they could also go to greater lengths to show how disability actually increases the sex appeal of the men represented. Arguably, the multiple phalluses of the veterans wearing prosthetic limbs are part of their attraction. And Will Traynor’s vulnerability, which only became apparent as a result of his disability, is key in his desire for Louisa and in his self-effacing humour. The sad affect of disability in reducing these men’s capacity to act has been overcome by the positive affect of increasing their sexual desirability. In undertaking further research on masculinity and disability, the broader economies of affect interpolated and viewing publics called to attention by texts, along with the ways in which representations increase or decrease the imagined and literal capacities to act of the disabled male body, are surely key sites for future inquiry. I now turn my attention to the gendered nature of environmental discourses and consider some ways in which Deleuze’s thought offers a useful resource for considering economies of carbon production and consumption in late capitalist economies.