Sexual Citizenship and Disability

Understanding Sexual Support in Policy, Practice and Theory

Julia Bahner

• Publisher: Routledge
• Year: 2019
• Print ISBN: 9781032083285
• eBook ISBN: 9780429950568
• Topic: Politics & International Relations
• Subtopic: Civics & Citizenship
• Index: Politics & International Relations

What does 'sexual citizenship' mean in practice for people with mobility impairments

who may need professional support to engage in sexual activity?

The book explores this subject through empirical investigation based on

case studies conducted in four countries – Sweden, England, Australia and the

Netherlands – and develops the abstract notion of 'sexual citizenship' to make

it practically relevant to disabled people, professionals in disability services and

policy-makers.

Through a cross-national approach, it demonstrates the variability of how

sexual rights are understood and their culturally specific nature. It also shows

how the personal is indeed political: states' different policy approaches change

the outcomes for disabled people in terms of support to explore and express their

sexualities.

By proposing a model of sexual facilitation that can be used in policy development,

to better cater to disabled service users' needs as well as furthering the

theoretical understanding of sexual rights and sexual citizenship, this book will

be of interest to professionals in disability services and policy-makers as well as

academics and students working in the following subject areas: Disability Studies,

Sociology, Social Policy, Sexuality Studies/Sexology, Social Work, Nursing,

Occupational Therapy and Public Health.

1 Setting the scene

Disabled sexual experiences in context

Introduction

In Western societies it is rather difficult not to be exposed to sexuality, be it through commercials using near naked bodies to sell various products or popular culture where romance, sex and coupledom are common themes. This everyday exposure to sexual imagery is limited, however, in an important respect in that it rarely includes any bodies, minds and sexual practices outside a limited range. It is likely that we will see white, able-bodied women in sexy commercials and heterosexual able-bodied couples of roughly the same age as romantic partners in television and movies and having penetrative sex with orgasm as the goal (although usually only for the man) in erotica and porn. We seldom see disabled people – either in film or in everyday life – presented as sexual beings (for notable exceptions see Houston 2019; Waxman Fiduccia 1999). In fact, in mainstream culture disabled people are often portrayed in a desexualising way (Stevens 2010). And when they have sexual roles, it is often in ‘assimilative, rather than transgressive’ ways, in an effort to ‘be tuned to the demand of popular taste’ (Malinowska 2017, p. 365; see also Andree forthcoming).

In the words of Rose Galvin (2006, p. 503):

[T]he silences surrounding disability and sexuality are as vital to the production and reproduction of normative discourses as are the cultural images that flood us daily with what constitutes acceptable forms of sexualit[ies].

Young disabled people experience a lack of role models in a discourse where disability and sexuality is seen as ‘other’ (Wiseman 2014, p. 163). This follows a historical line where visual representations have been that of ‘freakshow’, ‘the clinical gaze’, ‘inspiration porn’, disability as a metaphor or as something to be concealed and looked away from (Hunt, Swartz, Braathen, Carew, Chiwaula & Rohleder 2019; see also Ebrahim 2019; Kafer 2012). While the focus has shifted, the common denominator has been an othering of disabled bodies, minds and lives.

While the research upon which this book is based is not primarily a cultural analysis, it cannot be understood without cultural contextualisation (see Rainey 2011; Shildrick 2007). The impact of culture on one’s body image, identity and sense of attractiveness is uncontested (see Guldin 2000; Wiseman 2014). The policies that will be analysed in subsequent chapters have been developed by actors in different cultural contexts, and the interviewed organisations working on sexuality and disability are situated and need to position themselves within these various local contexts. Although culture in today’s globalised world is much more fluid, multifaceted and less dependent on geographical boundaries, we as humans are nevertheless immersed in it from the day we are born and assigned a gender. Throughout our lives we are constantly bombarded with cultural influences that to different degrees will influence our socialisation and identity formation. Another important factor which this book focuses on is advocacy by civil society groups and organisations. They contribute in different ways to new knowledges and practices relating to social issues, marginalised communities and identities. In a larger sense this book seeks to expand our understanding of sexuality and disability, but more specifically, it seeks to raise important issues around sexual support needs of people with mobility impairments. Through policy analysis and interviews with disabled people, their organisations and other stakeholders in Sweden, England, the Netherlands and New South Wales, Australia, I aim to illuminate how sexual support opportunities can be vastly different.

Though my starting point for discussing sexuality and disability is primarily social constructivist, the importance of the body is not overlooked (as will be discussed in detail in Chapter 2). Because, as my own as well as other empirical studies have shown, a person’s opportunity to explore sexuality in their desired way can be impacted by experiences of the body as well as social, cultural and political contexts. In particular, the lack of acknowledgement of being sexual experienced by many disabled people and non-existing sexual support frameworks are emphasised (Bahner 2016). Policies and practices are investigated through the lens of sexual ableism: ‘the system of imbuing sexuality with determinations of qualification to be sexual based on criteria of ability, morality, physicality, appearance, age, race, social acceptability, and gender conformity’ (Gill 2015, p. 151; see also Liddiard 2018). Furthermore, the experience of sexually being in the world is influenced by intersectional positions, for example with regard to gender and sexual identity, age, ethnicity and socio-economic status. Another important aspect concerns impairment type and the particular ways in which it affects bodily experience, including how other people – including the state – view it (Shildrick 2007). Understanding sexual support needs therefore necessarily involves an analysis that connects policy, practice and theory, as the book’s title suggests.

The two research studies upon which the book is based will be presented in detail in the next chapter, but I will offer here a brief overview. The first is a Swedish project about the sexual support opportunities for personal assistance users with mobility impairments, including perspectives from personal assistants, service providers, a disabled young people’s organisation and a state agency. The second is an international comparative study about the conceptualisation of sexual support in policies and among disabled people’s organisations and other relevant organisations – and their implications for practice. The starting point for these studies has been to interrogate how disabled people who wish to explore and experience sexuality are unable to do so due to various factors. It is grounded in a normative framework of sexual expression, intimacy and pleasure as an important part of many people’s lives and something that should be acknowledged and supported. There are disabled people, just like non-disabled people, who do not wish to pursue sexual goals or who do not require other’s support in doing so, but this research does not have them as a focus.¹ In the words of Dominic Davies (2000, p. 188):

We believe it is fine to be celibate and single, if it’s by choice. However, ableism, body fascism, and economic disadvantage are key social factors that cause many disabled people to remain single and isolated against their will. … We’ve fought for equality in terms of access to the built environment, to education and employment and now we want our rights to love, form relationships, and have sex with ourselves and with other people.

This chapter will now give an introduction to previous research on sexuality and disability, which provide important context for my own studies. In the next chapter, I will present the methods used and materials analysed in the projects, as well as the theoretical concepts that guide the analysis. In Chapters 3–6, each case study is presented: Sweden, England, the Netherlands and New South Wales, Australia. Finally, Chapter 7 discusses how disabled people’s sexual citizenship can be understood in relation to sexual facilitation opportunities in each context specifically, as well as more broadly. It also offers a conceptual framework for working with sexual rights advocacy on various levels to ensure what I term policy-based and practice-based sexual citizenship.

The disabled body, sexuality and society

Issues around sexuality and disability are necessary to understand against a certain historical background, namely the way that disabled people, and especially women, were forcibly institutionalised, sterilised and denied sexual expression (Engwall 2004). Eugenic practices, also in Nazi Germany, specifically targeted disabled people, among other marginalised groups. And while many countries have abolished the laws that allowed such systematic oppression, the views on which such laws were founded still exist in many of today’s post-institutional settings (Altermark 2017). There are also examples of ongoing restrictive and dehumanising institutional practices, such as being prescribed long-term contraception without consent (Tilley, Walmsley, Earle & Atkinson 2012). Many disabled people are seen as either hypersexual or asexual, and their sexualities evoke fear and risk-averseness in service provision. In the words of Mitchell Tepper (2000, p. 285), ‘Sexuality as a source of pleasure and as an expression of love is not readily recognized for populations that have been traditionally marginalized in society’.

For people with intellectual disability living in group homes or other similar institution-like residential facilities, the organisation of daily living can work to discourage sexual expression (Feely 2016; Löfgren-Mårtenson 2004) or simply deny privacy and necessary support (Hamilton 2009; Kelly, Crowley & Hamilton 2009). Service users’ sexual agency and choice are severely restrained by staff’s social attitudes and normative beliefs of the ‘right’ ways to be sexual (if at all) (Gill 2015). In cases of profound intellectual disability including those with individualised modes of non-verbal communication, sexual expression is often misinterpreted and gendered (Vehmas 2019). Service users’ sexuality is furthermore regarded as risky or even dangerous (either to themselves or to others, including staff) and therefore needs to be restricted (Hollomotz 2011).

For people with physical or sensory impairments, there is instead often a desexualising silence, where sexuality is either not expected to be important to individuals’ lives or brushed aside by professionals. One practitioner in a paper by Lorna Couldrick and Alex Cowan (2013, p. 123) suggested that ‘[sexuality] was dismissed as “an optional extra” because it was not essential to independent living’. Sexual expression is seen as separate from clinical practice, staff often lack training on the subject and organisations rarely have sexuality policies or otherwise openly acknowledge such needs. There are examples of staff rejecting a disabled person seeking advice on the premise that they were not sexually active at the time and therefore sexual health services were not needed (Lee, Fenge & Collins 2019). Living under circumstances where one’s sexuality is routinely denied or disregarded can result in internalised oppression and low self-esteem (see also Liddiard 2018; Wiseman 2014, p. 131).

In comparison with intellectual disability there is often a more medicalised focus around physical disability, partly due to the way that physical impairments and chronic illnesses are conceptualised as belonging primarily to the medical domain. Many disabled people, both with congenital and acquired impairments, go through various kinds of treatments in habilitation, rehabilitation and health care. It has traditionally been more common to study individual perspectives on how to ‘manage’ bodily differences in order to achieve ‘normal’ sexual functioning than to explore the structural and political aspects and their consequences for people’s sexual lives. It is therefore perhaps not surprising that there is an abundance of research from various health fields showing impairment or illness-related sexual ‘difficulties’ – but compared to earlier studies researchers now frequently include perspectives on the impact of social norms, gender and access to services (Beckwith & Yau 2013; Hunt, Braathen, Swartz, Carew & Rohleder 2018; Seddon, Warren & New 2017; Yılmaz, Gumus, Odabas, Akkurt & Yılmaz 2016).

It is now also more common to include notions of how sexual satisfaction may be experienced relatively independently from sexual function, and that the subjective experience of intimacy and pleasure are more important to many people (Liddiard 2018; Tepper 2000). The landmark research on the sexual lives of disabled people in the UK, The Sexual Politics of Disability – Untold Desires, was important in paving the way for a more social and political understanding of sexuality and disability. Shakespeare, Gillespie-Sells and Davies (1996) describe how being sexual in the desired ways are often fraught with obstacles for disabled people. These barriers are primarily social, political and economic – rather than biological or having to do with one’s impairments:

We can talk about sex. We can have sex – we are entitled to have sex and find love. We do face oppression, abuse and prejudice, but we can fight back and we can demand support and the space to heal.

(ibid., p. 207, original emphasis)

The book became an important validation for disabled people’s sexual stories and experiences, ‘both positive and negative’.

Continuing this tradition of ‘storying’ disabled people’s intimate lives, Kirsty Liddiard’s more recent (2018) work provides a broader analysis of the social and political implications of living sexual lives as disabled people, namely during neoliberal austerity in the UK. She also offers a more theorised framework for understanding disabled sexual experience as influenced by hetero...

Table of contents

• Cover
• Half-Title
• Series
• Title
• Copyright
• Contents
• List of Tables
• Preface
• Acknowledgements
• 1 Setting the scene : Disabled sexual experiences in context
• 2 Empirical and conceptual framework
• 3 Sweden
• 4 England, United Kingdom
• 5 The Netherlands
• 6 New South Wales, Australia
• 7 Understanding sexual citizenship
• Index