The Intimate Lives of Disabled People

Kirsty Liddiard

• Publisher: Routledge
• Year: 2017
• Print ISBN:
  9781409460909
• eBook ISBN:
  9781317027096
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Disabled people are routinely assumed to lack the capabilities and capacities to embody and experience sexuality and desire, as well as the agency to love and be loved by others, and build their own families, if they so choose. Centring on the sexual, intimate and erotic lives of disabled people, this book presents a rare opportunity to understand and ask critical questions about such widely held assumptions.

In essence, this book is a collection of sexual stories, told by disabled people on their own terms and in their own ways. Stories that shed light on areas of disability, love and life that are typically overlooked and ignored. A sociological analysis of these stories reveals the creative ways in which disabled people manage and negotiate their sexual and intimate lives in contexts where these are habitually denied. In its calls for disabled people's sexual and intimate citizenship, stories are drawn upon as the means to create social change and build more radically inclusive sexual cultures.

In this ground breaking feminist critical disability studies text, The Intimate Lives of Disabled People introduces and contributes to contemporary debates around disability, sexuality and intimacy in the 21st century. Its arguments are relevant and accessible to researchers, academics, and students across a wide range of disciplines – such as sociology, gender studies, psychology, social work, and philosophy – as well as disabled people, their families and allies, and the professionals who work with and for them.

1Exploring disability and sexuality

Accessible summary

•In this chapter I introduce the ways in which disabled people are denied access to their sexual lives, selves and bodies.

•I explain key concepts such as ableism, disablism and sexual normalcy.

•I introduce the empirical research that underpins this book, outlining the intimate politics of sexual storytelling.

•I offer a short history of existing research into disabled sexualities.

•I outline the contents of the chapters that follow in the remainder of the books.

Disabled people have a sexual history marked by oppression, suppression and violence, and much of this sexual history has, in the past, been overlooked within both academic and activist contexts in favour of a focus on disabled people’s social and political histories (Finger 1992; Shakespeare et al. 1996). Through disability rights movements from the 1960s onwards, disabled people have fought for their rightful place within public life, campaigning for civil rights, anti-discrimination legislation, equal access to education, community integration and environmental accessibility. Characteristically, alongside these have been an appreciation of diversity and a vivid celebration of pride. This (necessary) structural focus upon disabling environments has left disabled people’s sexual politics marginalised and has inadvertently created a significant dearth of knowledges around disabled people’s private and intimate lives. Since the early work of some disabled activists, who powerfully spoke out about their sexual oppression as central to their dehumanisation (see Finger 1992), and publication of the influential text Untold Desires: The Politics of Disabled Sexuality (Shakespeare et al. 1996), explorations of the oppressions within disabled people’s intimate lives have emerged, albeit slowly. Standing (and sometimes sitting – I get tired) on the shoulders of giants (see Garland-Thomson 2002 for a discussion on disability neologism), a key aim of this book is to contribute to these explorations.

Positioned largely as asexual, most disabled people are assumed to lack the capabilities and capacities to embody sexuality, sensuality, expression and desire.

For clarity, the asexuality I speak of here (and in the remainder of this book) differs from the emergent asexual identity category powerfully claimed by those who, for a variety of reasons, do ‘not experience sexual attraction’ (Scherrer 2008: 626), or those who assert a different engagement with attraction and desire, claiming a positive and prideful identity and finding home in asexual communities. Instead, the asexuality to which I refer is a set of processes purposefully imposed upon disabled bodies and minds through the processes of ableism and disablism (I define these terms below). However, this is not to negate the fact that, as Kim (2011) reminds us, disabled people can identify with an asexual identity, too. To assume that all disabled people are sexual ‘denies that asexuality can be positively experienced by subjects with a disability’ (Kim 2011: 482). Or, as Gill (2015: 17) rightfully posits, ‘being sexual is not central to being human; certainly many people live satisfying lives without sexual activity’.

In contexts of disablism and ableism, disability and impairment trouble that which we have come to understand as ‘(hetero)sex’: a naturalised mode of gendered sexual practices that privilege physicality, penetration, form and function. Lurking in the shadows of this standardised sexual mode is the normative, controlled and bound body and rational, sane and coherent mind. These are the necessary embodied qualities for claiming any kind of sexual selfhood in what are now deeply dis/ableist times. Yet at the same time, bodies and minds diagnosed, marked and labelled as impaired readily and forcefully disrupt or crip these prescribed sexual norms, for radical effect – a tension that I return to often through this book. To clarify my usage of the term crip at this early juncture, my understanding follows others (Clare 1999; McRuer 2006a; Sandahl 2003) to denote it as the desire to unsettle, to contest and challenge normalcy; or, as McRuer (2006b: 35) puts it when talking about crip theory, crip is that which ‘questions – or takes a sledgehammer to – that which has been concretised’ (see Chapter 2 for a full unpacking of crip).

Disabled people’s sexual agency and selfhood is often stripped away through stereotypes of eternal innocence and passivity. Alternatively, they are cast as objects of fetish: exploited, abused – the vulnerable subjects of devotees. Devotees are people attracted to impairment and/or disability that, quite typically, are pathologised for their desires, which are routinely considered ‘abhorrent’. Paradoxically, some disabled people – usually those with the label of intellectual impairment (North America) or people with the label of learning disability (UK) (I use the latter in this book) – are positioned as hypersexual and in need of containment (see Liddiard and Slater 2017; see also Gill 2015). This aberrant hypersexual subject is deemed to lack the capacity to understand sexuality and desire and its mechanics, or fully consent to sexual acts and relationships, making them inherently vulnerable to self and other. Quite often, the response is to protect and shield from the supposed perils of sexual and intimate life (Gill 2015). Such actions are built on the assumption that a lack of capacity risks others, in terms of both sexual health and sexual violence. Cast in binaries of vulnerable/dangerous, abused/abuser and protected/unprotected, then, sexual agency, pleasure and desire become, at best, secondary considerations to safety and safeguarding. People with particular mental health diagnoses often experience similar containment because they are considered hazardous, uncontrollable and ultimately harmful to themselves or others. A dangerous irony within and amongst such dis/ableist assumptions is that excluding and denying knowledge, information, support, space and access to sexuality increases disabled people’s vulnerability – particularly people with the label of learning disability – putting them at a greater risk of sexual abuse and violence (Hollomotz 2011; see also Razack 1998).

Disabled sexualities quickly fall into a realm of deviancy simply because, to fit with dominant constructions of disabled people as passive, vulnerable and childlike, disabled people aren’t supposed to be having or desiring sex at all. Consequently, disabled desires are cast as inappropriate and unruly because they can take different forms to established sexual norms, particularly where the support of others is required. For example, facilitated sex (Earle 1999: 312), or sexual support (the term I use in this book), in its most applied sense, is usually carried out by a personal assistant, carer, partner or other chosen person, and can encompass a wide range of practices:

At a general level, it might mean that assistance is required to attend social events such as parties, or to go to pubs and clubs. It might also mean, as described by one individual in the study, that assistance is required to negotiate the price when using the services of a prostitute [sic]. More specifically, a person might be required to facilitate sexual intercourse between two or more individuals, to undress them for such a purpose, or to masturbate them when no other form of sexual relief is available.

Sexual support comes up a lot in this book, even though the disabled people in my research rarely labelled it as such (see Chapter 7). This is not surprising, given that sexual support is contentious because of the ways in which it exposes the ableist myth of the sexually self-sufficient and self-governing body. In doing so, it contradicts the fundamental norms of conventional sexual mores that are ‘heterosexual, private, ideally reproductive, and above all autonomous’ (Shildrick 2009: 70). I say myth, because all people need, use and desire support. As humans we are rooted in a multiplicity of connections – technology, family, and community – we individually and collectively rely upon too many services and structures to mention here. Humans aren’t autonomous or independent; everyone is reliant, interdependent and subject to a range of supports that enable everyday life. In the context of disability, support can take on new meaning to emerge as a problem, burden or, where sexuality is concerned, a form of deviance. When sexual support comes in the form of a sex worker, for example, who might assist a disabled person to experience pleasure, disabled desires come to be at risk of criminalisation. This is reflected in British legal constructions of sex work, whereby both soliciting (a crime of the seller) and curb crawling (a crime of the buyer), amongst other aspects of the sale of sex, are punishable by law. Sexual support emerges as a key theme in Chapter 7, where I consider the commercial sale of sex in contexts of disability. Those in my research who did engage in the commercial sale of sex did so primarily as the buyer, but it’s important to acknowledge that sex workers are often disabled people too (Fritsch et al. 2016). Regardless of who is selling or buying, it is important to recognise that both actions remain predominantly socially deviant and/or illegal activities, both in the UK and across the globe.

While I have merely sketched out descriptions of Brown’s (1994: 125) categories of ‘asexual, or oversexed, innocents or perverts’ here, they are fully fleshed out between these covers. In the remainder of this chapter I introduce the concepts of disablism and ableism as governing forces within human, sexual and intimate life. I consider their impact upon disabled people’s access to desire, pleasure and sexual agency and selfhood in these neoliberal-able times (Goodley 2014).¹ Later, I introduce the empirical sociological research that underpins this book. I begin with a short history of research into disabled people’s sexual and intimate lives, before outlining the genesis of this study – the impetus for exploration of this kind, the specific areas in focus and the central questions that guided my research. In doing so, I outline the personal and political emphases of telling sexual stories (Plummer 1995) and detail how sexual stories were collected and co-produced. Throughout this chapter I briefly introduce the contents of each chapter, which I hope can act as some kind of road map to guide readers. I recap these at the end.

Dis/ableism and sexuality

The term dis/ableism is used within this book to refer to the dual processes of disablism and ableism. This is because, more often than not, they work in conjunction, supporting one another, always intimately connected. Where I refer specifically to ableism or disablism, I use the respective term. While there are contestations around the meanings of both disablism and ableism (particularly between British and North American disability scholars and activists), for the purposes of clarity I follow Fiona Kumari Campbell’s (2001: 4, 44) definitions:

Disablism: A set of assumptions (conscious or unconscious) and practices that promote the differential or unequal treatment of people because of actual or presumed disabilities.

Ableism: A network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then is cast as a diminished state of being human.

This ‘corporeal standard’ proliferates within ableism and underscores why medical models of disability forcefully prevail in Western cultures. In late modernity, biomedical paradigms continue to perceive and treat impairment only as physiological deficiency. This deficiency is typically hypermanaged through relentless surveillance, classification, intervention and treatment and, for some, eradication. For example, measures such as restricted access to sexual health and family planning for disabled people, legal abortions on disabled foetuses at any time during gestation (in UK law), much genetic and stem cell research, and assisted dying are considered by some to be contemporary forms of genocide (see Morris 1991; Rock 1996; Sobsey 1994; Waxman 1994). Therefore, the impaired body and disabled existence are firmly devalued and dehumanised within the medico-scientific contexts that proliferate through ableism. An ableist imperative deems impaired bodies and minds subsist only as broken and, as such, subject to a very different set of priorities than those considered ‘able’. Mitchell Tepper (2000) argues that it is this ‘brokenness’ that significantly contributes to impaired bodies and minds being cast as not requiring – or failing to embody – sensuality, pleasure and desire.

Ableism also permeates at the roots of sexual normalcy. Heteronormative sexuality, the governing mode of sexual order, is a distinctly narrow and highly regulated mode of naturalised sexuality. It is, amongst other things, rooted in a gender binary that maintains a phallocentrism that propagates pleasure as always genitally focused and performance-orientated (Tepper 2000). Disabled people (regardless of their impairments/labels) are assumed to lack the bodily requirements to perform heteronormative sexuality in expected ways. Disability is unruly and disorderly. Scholar Tobin Siebers (2008: 133) suggests that alternative means of acquiring pleasure often remain unrecognisable and that such ‘illiteracy about the minds and bodies of disabled people drapes their sexual practices in deviance and perversion’. Let’s not forget that conventional heterosex remains definable in terms of a reproductive imperative. Within the tyranny of ableism, it is not surprising that such an imperative is strictly exclusive to bodies deemed able, where procreation is ‘solely the province of the fittest’ (Tepper 2000: 285). Or, as disabled feminist Waxman Fiduccia (2000: 169) simply puts, ‘sexual rights have always and only been awarded to those who are proclaimed to deliver quality offspring’.

Without doubt, we are living in deeply dis/ableist times. Ableism and disablism are ever present within postmodern society, where neoliberal and scientific rationalist ideologies are thriving and, currently, where global capitalism and global austerity are routinely highlighting the costs and therefore undermining the (human) value of disabled people. I follow McRuer (2006a: 2) in my understanding of neoliberal capitalism: ‘the dominant economic and cultural system in which, and against which, embodied and sexual identities have been imagined and composed over the last quarter century’. The current UK context from which I write this book is a very good example of the toxic combination of disability, austerity and dis/ableism (Goodley et al. 2015). Most disabled people in the UK live in continuing poverty (Parckar 2008). Many disabled people remain excluded from or poorly supported and protected within the British labour market (Wilton and Schuer 2006). Disability hate crimes remain seldom satisfactorily recognised and policed (despite having markedly increased during austerity) (Roulstone et al. 2011; Soorenian 2016). Disabled people (particularly women) experience higher rates of sexual, physical and emotional violence than non-disabled people (Thiara et al. 2011). Debates on assisted dying are dominated by privileged voices and (dangerous) quality of life measurements, as well as ableist constructions of dignity (Koch 2000), and ‘eugenetics’ movements (Armer 2007) and ‘genetic fundamentalism’ (Overboe 2007: 223) loiter at the forefront of bio-scientific advancement. Each of these factions of modern life routinely demand and circulate a compulsory ‘ableness’ that simultaneously devalues disabled people’s very existence (Campbell 2009).

We know too that disabled people have suffered exponentially through the austerity politics of both the previous coalition Liberal Democrat–Conservative government (which came to power in the UK in 2010) and the current Conservative government in the UK – a very Tory Story. Significant cuts to a multitude of benefits and public services – a predictable and systematic rolling back of the State – have exacerbated existing disability oppressions, and have ontologically, psychically, symbolically, materially, emotionally and affectively stripped disabled people (amongst many other minorities) of their rights, access and self- worth. There are countless disabled activists, self-advocates, artists (see Crow 2015) and allies who are documenting and mapping the brutal ways in which austerity has been enacted since the recession (Loach 2016). This work has highlighted the present as a time in disabled people’s history when they are striving, once again, for rights and access to civil life. And, of course, such a desire to reduce the economic costs of disability, sickness and illness is further intensified through myriad other austerity measures that have targeted the poor, insecurely housed, deprived and ill, many of who are disabled.

For me, love, sex, intimacy and emotion are central to these austerity politics: disabled people are currently fighting to remain part of their communities; to stay connected to their partners, children and families; to find and stay in meaningful work; to be appropriately housed; and participate in civil society – surviving on ever-shrinking incomes and real uncertainty around the provision of services upon which many depend. As austerity bites and welfare is rolled back, more emphasis is placed upon individuals to take care of themselves and their loved ones, revealing the extent to which austerity demands able and ableist citizens. We are yet to know the true impact of Brexit (or, across the pond, Trump), though we can imagine these to bring a multitude of new harms to marginalised people, especially those who are disabled, sick and ill.² Despite this changing global order, however, austerity is seldom an explicit feature in this book; rather it is quietly present, not overt in people’s stories but lurking nonetheless. In essence, this is because the austerity agenda and subsequent scapegoating of disabled people in the UK was only really just beginning at the very end of the research. Back then the disabled people at the centre of this study hadn’t yet felt the sheer wave of the cuts to b...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright
• Dedication
• Contents
• Preface
• Acknowledgements
• 1 Exploring disability and sexuality
• 2 Theorising disabled sexualities: constraints and possibilities
• 3 Reflections on the process of researching disabled people’s sexual lives
• 4 ‘Can you have sex?’ Intimate citizens and intimate selves 56
• 5 ‘I need to stick with this because I might not find anybody else’: the labour of love
• 6 ‘If I ever wanted an affair I’d have to send my lover to lifting and handling classes first!’ Sexual normativity and othered bodies
• 7 ‘…They finish off with a blow job’: politics, power and the precarity of pleasure
• 8 Drawing some conclusions
• Bibliography
• Index