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Disability and Sexual Health: Critical Psychological Perspectives

Poul Rohleder, Stine Hellum Braathen and Mark T. Carew

https://cxm.co.uk/


Contents:
1 Introduction
2 Understanding disability
3 Disability, identity and ‘vulnerability’
4 Sexual health education
5 Sexual abuse and exploitation
6 HIV and sexually transmitted diseases
7 Disability and sexual and reproductive health care
8 Inclusive practice


CHAPTER 1

INTRODUCTION

The expression and experience of sexuality is a central aspect of being human. As defined by the World Health Organization (WHO, 2006a), sexuality should be understood as encompassing more than just the act of sex, extending to gender roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality can be expressed in a multitude of ways, including the sexual desires and fantasies we have, our sexual attitudes, behaviour and practices and the sexual roles and relationships we engage in with others. Although sexuality is a universal characteristic existing across all societies worldwide, its experience and expression is influenced by a range of factors, including biological, psychological, social, economic and cultural.

Sexuality means something different to each of us. Moreover, in many cases the way an individual chooses to express their sexuality is at odds with those around them. For instance, in many areas of the world there still exists widespread prejudice and opposition toward people who have same-sex relationships. This engenders a variety of consequences. In some societies, practices common for people in opposite-sex relationships (e.g. marriage) may not be available to others, while in some places same-sex relationships may be considered a crime. That some people accept such relationships and others do not is an example of how sexuality means different things to different people.

The position taken in this book is that of the one adopted by the World Health Organization (WHO, 2006a), namely that people have sexual rights, including for example, the right to freely choose a partner and the right to engage in consensual sexual relations. When the way we choose to experience or express our sexuality is restricted or diverges from the expectations of those around us, it affects our well-being. This underpins the importance of the sexual rights approach. One aspect of sexual rights is the right to lead a healthy sexual life. We focus specifically on sexual health in this book, but of course this is embedded within sexual rights more broadly. But what exactly do we mean by sexual health?

Sexual health, sexual rights and disability

Sexual rights are human rights: the right to live one's sexual life free of coercion, in health and with satisfaction and with freedom of choice over consensual sexual relationships and reproduction. Sexual health encompasses sexual rights, and is understood as being more than just the absence of disease. The World Health Organization (2006a) takes such a human rights perspective in their working definition of sexual health, describing it as:

a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled. (WHO, 2006a, p. 5)

The WHO refers to the sexual rights of all persons, and that includes persons with disabilities. Yet, as many readers may know, the sexual and human rights of persons with disabilities have historically been a site of oppression, denigration and discrimination (Shakespeare, Gillespie-Sells, & Davies, 1996). We have seen this in historical practices where people with disabilities were kept apart, institutionalised, forcibly sterilised and even systematically murdered (as in the Nazi regime). Times, of course, have changed. But in many ways, they have not. Societal attitudes about people with disabilities may have changed in some parts of the world, particularly in recent years, through events such as the Paralympics, the representation of people with disabilities in media and film and increased participation in work and community activities. Policy has also changed since the start of the disability rights movement in the 1970s, and there has been a growing recognition of disability rights as a human rights issue (WHO and World Bank, 2011). This has been marked by the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, United Nations, 2006). Despite these movements, the reality is that the majority of people with disabilities in the world live in relative poverty and enjoy little access to full participation within society, including sexual health, and experience diminished sexual and reproductive health rights (Braathen, Rohleder, & Azalde, 2017).

The picture of disability in the world

It has been estimated that people with disabilities make up somewhere between 10 per cent and 20 per cent of the world's population, and of those, 80 per cent live in low-income countries and have little or no access to basic health and social services (Lancet, 2009; Shakespeare, Iezzoni & Groce, 2009; WHO & World Bank, 2011). Prevalence figures vary due to the different methods used to define, identify and measure disability (Loeb & Eide, 2006; Shakespeare et al., 2009; WHO & World Bank, 2011), but greater consensus has emerged in recent years through the development of the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001) and the UNCRPD (Officer & Groce, 2009; United Nations, 2006). Issues of definition and measures of disability will be discussed in more detail in Chapter 2. The World Report on Disability (WHO & World Bank, 2011) suggests that there are more females with disabilities than men with disabilities globally.

As suggested above, more people with disabilities have been identified as living in poverty than people without disabilities, with an estimated 80 per cent of the global population of people with disabilities residing in low-income countries, but also a higher proportion of people with disabilities living in relative poverty in higher-income countries (WHO & World Bank, 2011). Evidence indicates that many of these people are trapped in the poverty cycle because disability is also related to poorer outcomes in areas beyond health. In particular, people with disabilities experience reduced opportunities for income generation through employment and disability, which is also recognised as placing significant economic cost on people with disabilities and their families, in addition to other burdens (Elwan, 1999; WHO & World Bank, 2011). For example, in the UK it has been suggested that living with a disability incurs costs equivalent to between 11 per cent and 69 per cent of income (Zaidi & Burchardt, 2005). These include costs associated with additional resources and services required because of disability (these may include, for example, additional heating, additional laundry expenses, cost of specialist transport), which increase with severity of disability.

Despite an extensive body of literature describing people with disabilities as the most marginalised and vulnerable segment of any population (Eide & Ingstad, 2011; Elwan, 1999; Groce & Trani, 2009; Ingstad, Munthali, Braathen, & Grut, 2012; Officer & Groce, 2009; United Nations, 2011; WHO & World Bank, 2011), they have been, and continue to be, denied many of their basic human rights (Harpur, 2012), were largely excluded from the United Nations Millennium Development Goals (MDGs)1 (Groce & Trani, 2009; United Nations, 2011) and from overall development aid programmes (Grech, 2009; Mji, Maclachlan, Melling-Williams, & Gcaza, 2009; United Nations, 2011). Stigma and prejudice are said to be the greatest barriers to the inclusion of people with disabilities (Groce & Trani, 2009). Wrongful assumptions and beliefs can lead to exclusion. One example is the belief that people with disabilities are asexual, and are therefore not in need of sexual education or sexual health care, and it is this that we focus on in this book.

There is, however, prospect for change, with the UNCRPD (United Nations, 2006), which obligates states, through a legally binding instrument, to protect the human rights and provide equal access to health and social services for people with disabilities (Stein, Stein, Weiss, & Lang, 2009). Efforts are also made to bring disability into the post-MDG agenda (United Nations, 2011). Currently, however, the sexual health of people with disabilities remains a neglected area, and has been highlighted in the World Report on Disability as a concern. It needs to be put on the general research and practice agenda.

Rationale for the book

There are some books dealing with disability and sex and sexuality (e.g. McRuer & Mollow, 2012), but there are no books on disability and sexual health. As we will discuss in Chapter 2, disability has been traditionally understood from within the medical model, as resulting from an underlying biological or psychological impairment within the individual. The sexuality and sexual health of people with disabilities under a medical model would be primarily concerned with issues of sexual functioning, capacity and behaviour. This book will take a critical approach, drawing primarily on the social and biopsychosocial model of disability (discussed in Chapter 2), which understands disability as resulting from a combination of activity limitation (impairment) and participation restrictions (exclusion and oppression). A key issue, as already highlighted, is exclusion and oppression, and thus the book will be primarily concerned with issues of power and inequality as it relates to sexuality and sexual health for people with disabilities.

Research suggests that people with disabilities are often excluded from sexual health services and programmes, and may be at increased risk for sexual abuse and sexually transmitted diseases. There are a number of myths associated with the sexuality of people with disabilities, including the myth that people with disabilities are non-sexual, or lack capacity to engage with sexual relationships, which has resulted in people with disabilities often being overlooked when it comes to sexual health. These are all issues that will be explored in this book.

Although primarily taking a critical perspective to exploring issues related to disability and sexual health, the book is less about theorising disability and sexual health, or critically engaging with such theory. Rather, it is more about examining the issues involved that exclude people with disabilities from access to sexual health rights. We also focus more on "problems" rather than more "emancipatory" positions (for want of a better word). In other words, the book will not look at how people with disabilities can, or indeed do, have good sex and good sexual lives, although we do touch on this in some parts. We do so, because we want to reflect what we feel are the global realities of most people with disabilities; we focus on exclusion and barriers to inclusion, which we feel are the issues that urgently need to be addressed.

A note on terminology

Before proceeding we need to take a moment to think about the terminology used. First of all, we use the terms "people with disabilities" or "persons with disabilities" rather than a term like "disabled people" as the emphasis in the former is on the person first rather than on the disability. Although we refer to people (or persons) with disabilities as if this is a homogenous group, it is important to note that people with disabilities make up a very diverse group. Not everyone has the same set of vulnerabilities, and lives and experiences them the same way (Freeborn & Curry, 2009). For example, some people have disabilities that cause intense pain and severely restrict how they live their daily lives. Other people with disabilities may experience little disruption to the way they live. They may be able to complete almost all activities as well as non-disabled people, and, in some cases, may even be able to out-perform them (e.g. Paralympians). Similarly, people with disabilities encounter different barriers in their environment and their community based on their background and life experiences, in addition to the nature of their disability. In particular, disability can intersect with other categories (e.g. gender, race, socio-economic status), to disadvantage or advantage one person compared to another with the same impairment (see Chapter 3). Like everybody, people with disabilities also possess different characteristics to one another, which influence how they respond to the barriers they encounter. In light of this, we refer to "non-disable" or "people without disabilities"; in this book to describe those who do not experience a disability. We generally do not make use of the term "able-bodied", because it suggests that people with disabilities are not "able", and in fact there are various ways in which people with disabilities are "able".

With regard to specific disabilities, there are many types and forms, but we will generally refer to the broad categories. Here we also need to note the use of terminology, as there are many in use. In some countries, people who have what used to be referred to as "mental retardation" (e.g. in the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV), American Psychiatric Association (APA), 2000) are generally referred to as having an "intellectual disability". This is a commonly used term in the United States and is used in the latest revision of the DSM. In the UK, the term "learning disability" is commonly used, and favoured. We will use these terms . learning disabilities or intellectual disabilities . somewhat interchangeably, partly depending on the country that we are discussing or the term used in a particular study cited. In some cases, people have used "intellectual disability" to also include people who have acquired a neurocognitive impairment. Another related term is "developmental disability", which may or may not include people who have "mental retardation". This could include people who have received a diagnosis of autism, for example. For disability related to hearing, we will use the term "hearing impairments" and/or "deaf"; and for disability related to vision, we will use the term "visual impairments" and/or "blind". We might use the term "sensory impairments" to refer to visual and hearing impairments collectively. For disabilities related to the physical body, we will use the term "physical disabilities". This of course, captures a multitude of impairments, and it would be cumbersome to discuss and refer to all types. Where we want to highlight mobility difficulties, we will refer to people who make use of wheelchairs or people who may have "mobility impairments". For disability related to mental health problems, many people use the term "psychiatric disabilities" or even "mental disabilities". Psychiatric labels are contested by many who highlight the social determinants of poor mental health. This is a debate that is beyond the scope of our discussion here. We adopt a critical psychology stance, and will use the term "psychosocial disabilities". We might refer to specific impairments or disabilities at times . for example, albinism or spinal cord injuries . particularly where disability-specific issues need to be highlighted.

In this book, we use the generic term "disabilities" to refer to people with different categories of impairments, including physical, learning/intellectual and sensory impairments, who experience disability as a result of social exclusion. We orient our focus at this general level in order to explore barriers and experiences of sexual exclusion that, while varying across individuals with disabilities and particularly categories of impairments, are nonetheless shared in terms of broad, unifying characteristics. That is, while people with disabilities form a heterogeneous, diverse collection of individuals, they nonetheless can and should be thought of as belonging to a group, because every person with a disability shares elements of a common experience. At the moment, sadly, part of this experience involves barriers to social participation, including being able to lead fully sexual lives, which we are concerned about in this book.

Note that we are not suggesting that all people with disabilities identify strongly as a person with a disability or go about their day-to-day activities keenly aware of the impact disability has on their lives. For example, a person with a learning disability may feel they have far more in common with a non-disabled person compared to a person with a physical disability (and vice versa) for various reasons. People with disabilities are also not immune to holding prejudices toward those who have other types of disabilities, just like non-disabled people (Deal, 2003). Instead, we only wish to highlight how broad experiences of exclusion, while differing in extent and nature, are shared across people with disabilities.

About the authors

So, who are we, and why are we writing this book? We are a group of academics, one of whom identifies as having a physical disability, the other two as non-disabled. Much has been written in the disability studies literature on the presence of non-disabled academics in disability studies, with the discussion revolving around issues of representation, and "insider" and "outsider" voices. This is a complex debate, and one that we cannot fully get in to here in this short introduction. We are also a group of two men and one woman, one gay and two straight individuals. We are of different nationalities (British, Norwegian, South African), with experience of working in different contexts. The three of us have experience of research in disability and sexual health, and are currently collaborating on a research project on the topic of disability and sexuality in South Africa. We also have different degrees of experience in academic writing. Inevitably, we do bring with us our different perspectives (about disability, gender, sexual orientation, nationality and place) to our writing in this book; perspectives that are of relevance to the different intersecting topics that are involved when looking at disability and sexual health (see Chapter 3 for further exploration of this). What we feel is important to say though, is that we do not make any claims as to the "disability experience": our book is not about the experience of disability; our focus is more towards sexual health and how people with disabilities have been excluded. Our writing is informed by research . our own and from the broader literature. Two of the authors come from a psychology background and one from an anthropological background. In this book, we have tended to adopt a critical health psychology perspective, but have looked to research from a variety of disciplines, including psychology, public health, sociology, anthropology and other disciplines. Our diverse experience and interests are, we hope, reflected in the book.

Outline of the book

Along with this introductory chapter, the book is made up of a further seven chapters. Chapters 2 and 3 are intended to provide the theoretical frameworks from which to understand, from a critical perspective, the issues at play in relation to specific sexual health concerns, which are covered in Chapters 4 to 7.

Chapter 2 will explore the various theoretical approaches to understanding and defining disability. As will become clear, defining disability is not a straightforward task, and there are a number of contested approaches. The chapter will first describe the medical model, which views disability in terms of an underlying biological or psychological impairment. The chapter will outline critiques of the medical approach that formed the basis of the development of the social model of disability, which views disability in terms of the various structural, social and attitudinal barriers faced by people who have impairments. The chapter will further discuss the psychosocial model of disability, which incorporates a psychological (particularly social psychoanalytic) approach to understanding the experience of disability and internalised oppression. We will then look at more critical approaches, before finally discussing the biopsychosocial model, which attempts to incorporate key aspects from the above main approaches.

In Chapter 3, we will introduce the concepts of stigma and "normality" in relation to disability and sexuality. The chapter will explore the various socio-cultural understandings of disabilities and how these shape lay understandings of the sexuality of people with disabilities. We have a case discussion of recent movies from different countries that feature people with disabilities to illustrate some of these constructions. The chapter starts by outlining traditional and existing constructions of people with disabilities as asexual, or as sexually disinhibited and "dangerous". The chapter will take a historical overview, outlining how people with disabilities have often been constructed as "other", including historical oppressive practices such as forced sterilisation. We also interrogate the "vulnerability" of people with disabilities, by seeing it not as an intrinsic aspect of disability, but rather in terms of how identities are socially constructed. We do so by also looking at how disability intersects with other identities, such as gender, sexual orientation and ethnicity. This chapter inevitably involves brief discussions of these areas, as an attempt to highlight that although we refer throughout to "people with disabilities" this does not represent one generic group.

Chapter 4 will explore how young people with disabilities may be excluded from sexual health education. This can often times be due to social constructions of people with disabilities as asexual and thus not in need of sex education. Associated with this are the reported anxieties and challenges faced by educators. The chapter will further explore barriers that may exist, using as an illustrative example the challenges to understanding in delivering sex education to people with intellectual disabilities, drawing on research from the UK that uses conversation analysis to analyse actual educational sessions.

In Chapter 5 we explore the serious issue of sexual abuse and exploitation. As will be made clear, young people with disabilities are significantly more at risk for sexual abuse and exploitation than the general population. The chapter will review the literature in the area and discuss the implications of this for sexual health. Along with a look at prevalence and reporting outcomes of sexual abuse, we will also look at the intersection of disability stigma and sexual relationships that may involve risk. The chapter will also draw on research work with women with disabilities from Malawi as an illustrative example of the issues involved.

Chapter 6 looks at the risk factors for HIV and sexually transmitted diseases. The chapter will draw on the research of the authors on disability and HIV, as well as the international literature to discuss the intersection between disability and the various risk factors for HIV and other sexually transmitted diseases. The chapter has a particular focus on HIV as this is a growing focus in the international literature, and it is a particular focus of the authors" research. However, the issues discussed in the chapter related to HIV are equally pertinent to other sexually transmitted diseases. For example, in addition to lack of sex education (Chapter 4) and sexual abuse (Chapter 5), risk factors also include lower levels of education and employment, greater risk for relative poverty, perceptions of risk and disability stigma. The chapter will also look briefly at the disabling effects of HIV. The chapter will use the rarely researched experience of people with disabilities who are also living with HIV, drawing on published studies from Zambia as an illustrative case example.

In Chapter 7 we will explore the various structural/environmental and attitudinal barriers faced by people with disabilities in accessing sexual and reproductive health care services. The chapter begins by providing an overview of these barriers in terms of general medical health care, highlighting in particular that poverty may influence the degree to which such care can be accessed worldwide. Subsequently, the chapter will look at these barriers in the context of sexual and reproductive health specifically, drawing on the authors" work (including a case study from Malawi) and the work of others conducted in various resource-poor and resource-rich nations. The chapter will also examine the barriers to motherhood that women with disabilities experience, illustrated through discussion of historical and contemporary examples (including a case study from the UK).

Chapter 8 will function as a concluding chapter, summarising the key issues highlighted in previous chapters. We will make a link here to issues of human rights and global policy. The chapter will make some suggestions for how to consider more inclusive research, drawing on our own research experience. The chapter will also look briefly at some issues to consider for inclusive practice; looking specifically at addressing structural and environmental barriers, addressing attitudinal barriers, practice that is participatory, and the training of professionals and support staff. Collaboration with the disability sector will be emphasised.

We have sought to be international in our focus, drawing and highlighting research and cases from different parts of the world. As noted above, we have also made use of some research or historical cases as illustrative examples. Although we have attempted to have an international focus, we have deliberately been most interested in low- and middle-income regions (such as Malawi, South Africa, Zambia). We confess that this is partly because this draws on our own work. However, it is also because it is in such countries that the majority of people with disabilities in the world live, and that on balance have been neglected or overlooked. There is a lot more research on disability and sexuality from the UK and USA (to name just two countries), but we feel that they do not reflect the reality for the majority of people with disabilities, although, sadly, in many cases, the exclusion of people with disabilities is a common issue.

Sexuality and sexual health are large topics, and there are areas that we have not covered here (e.g. sexual offending). As we stated earlier our intention is to highlight some of the key barriers that people with disabilities face. We hope that this book gets you, the reader, interested in learning more.

Note 1 See the millennium development goals here: www.un.org/millenniumgoals/.


CHAPTER 2

UNDERSTANDING DISABILITY1

What do we understand by the term "disability"? This may seem like an odd question to many unfamiliar with disability studies. It may seem obvious to such readers what "disability" means, or why we may refer to someone as "disabled", and what makes them disabled. But this is not straightforward, and if we look more critically at our understanding of "disability" we will see that this very much depends on where the experience of "disability" lies, from which perspective and in which context. Is a person who makes use of a wheelchair "disabled" because he or she makes use of a wheelchair in and of itself, or are they disabled because they face stairs that prevent them from accessing a space? Is a person who is blind "disabled" because they cannot see, or are they disabled because they cannot access written information? Is an individual who is deaf "disabled" due to the hearing loss, or because most people are unable to communicate with them in sign language? Is a white individual with albinism as "disabled" as a black individual with albinism?
Much of our understanding of disability involves a comparison to the "norm" . we understand "disability" as distinct from "ability" . distinguishing what is the "abnormal" body from what is the "normal" body. However, it is more than just comparison to the norm (because the "norm" after all is average); it is what comparatively is seen as "sub-normal" as opposed to the norm and the ideal (above normal); and so "disability" equates with undesirable deviance. Where the boundaries of these concepts are, is not clear-cut. There is also not one unanimous understanding of what causes disability. Many readers may say that it is a result of a medical condition or biological impairment. Others might say that disability is the experience of social and environmental barriers to equal access; still others will understand disability as "the will of God", "karma" or a spell.

As readers will hopefully see in this chapter, "disability" is a complex, dynamic, multidimensional and contested concept (WHO & World Bank, 2011). This is not just a theoretical matter or concern; it is also political and personal. This chapter will explore the various theoretical approaches to understanding and defining disability. There are numerous theoretical models for understanding disability and it is beyond the scope of this chapter to look at each one of them. This chapter will primarily focus on giving a critical outline of four of the major explanatory models for disability: the biomedical model, the social model, the psychosocial model and the biopsychosocial model. For a fuller outline of the various theoretical models, readers would do well to read Goodley's (2011) excellent introduction. In this chapter we will also include some exploration of different cultural and contextual factors that may influence disability and sexual health issues, including some discussion of disability in relation to living conditions and experiences in different contexts (low-, middle- and high-income contexts) and countries (with different laws, policies, structures and health care systems).

Disability as a moral tragedy

Disability has always been part of the human condition, and all societies have complex belief systems and practices related to health and disability (Groce, 1999; Gronvik, 2007; Kleinman, 1980; Kleinman & Benson, 2006; WHO & World Bank, 2011). Throughout history people with disabilities have been subject to hatred, curiosity, fascination and sympathy, they have been made exotic, pitied, patronised, ignored and admired (Goodley, 2011). We have mostly tended to see "disability" as a tragedy and historically many societies have arrived at supernatural, spiritual and religious explanations for the "tragedy" of disability (Goodley, 2011). Such explanations typically take a moral position towards understanding disability, where disability is seen as a divine punishment for sin, evil or a failure of faith (Goodley, 2011). The presence of a disability brings shame to the individual and their family as the public stigmata of their immorality. From this perspective, disability can also be cured by divine intervention. The problem of "disability" here lies within the individual (his or her moral character specifically), who needs to be fixed and made right. For example, Hindu scripture teaches that the cause of human suffering is due to wrongs committed in a past life, known as karma. Under this system, disability is primarily seen as a result of fate, or kismet, in areas where such beliefs predominate, such as rural India. Although disability as a consequence of fate is often accepted as a punishment for misdeeds, Mehrota (2008) notes that this does not stop people with disabilities from seeking out pseudoscientific as well as medical cures. Moreover, belief in divine causes of disability may lead to people without disabilities engaging in rituals to ward off the possibly of becoming disabled. The commonality in these approaches is that disability is seen as something to be cured and not adapted to. In fact, these cultures may have a long tradition of marginalising people with disabilities through oral histories and folk songs (Mehrota, 2008).

However, this "moral" model is not lost to history. For many cultures, it is still a dominant conceptualisation. Understanding of disability may also involve concepts about evolutionary progress and development. Baynton (2013) observes how along with conceptions of "normality" and disability, are evolutionary ideas about progress, with the "sub-normal" thus seen as an evolutionary step backwards. Moral ideas can come to play here, with people with disabilities historically often being seen as "defective" and "primitive" and thus their treatment as sub-human was seen as justified. Some of the moralising aspects of such perspectives still prevail, as can be seen by the contemporary discourse in the UK (and elsewhere) of the moral neo-liberal citizen, with discourses contrasting those moral citizens who contribute to society and the immoral "scroungers" who do not (Garthwaite, 2011). Or where barriers to achievement for people with disabilities are seen as only because of a "bad attitude" (Young, 2012). Those with visible, severe disabilities may be excluded from this as charitable cases.

What at first was regarded as a moral tragedy, disability in recent decades came to be seen as a medical tragedy. The development of what has come to be known as the medical model of disability for many years dominated our understanding of disability.

The medical model of disability

In more recent history disability has been seen as a medical condition, defined through a biomedical model, which focuses on impairment (Gronvik, 2007; Officer & Groce, 2009). The medical model understands disability as resulting from an impairment, which in turn is caused by an underlying biological disorder, disease or deficit. This was once the model adopted by the World Health Organization in their definition of disability as "any restriction or inability (resulting from impairment) to perform an activity in the manner or within the range considered normal for a human being" (WHO, 1980, p. 1). As with the "moral" model, the medical model also offers an individualistic understanding of disability, referring to deficits in the body, something missing in the individual: a limb, an organ or a mechanism in the body (Finkelstein & French, 1993; Harpur, 2012; Officer & Groce, 2009; Shakespeare, 2014; Shakespeare, Iezzoni, & Groce, 2009). As Edwards (1997) pointed out, the medical model characterises disability as intrinsic to the individual, resulting from impairment and is context neutral. In this model, the disabled individual suffers a medical tragedy that could be "fixed" by means of medical intervention. The disabled individual is alterable, while the assumption is made that the environment remains fixed (Barnes & Oliver, 1993).

It has been argued that the medical model is backward-looking and reactionary (Shakespeare, 2014), with its lack of focus on social factors, such as discrimination, prejudice and inaccessibility (Officer & Groce, 2009), and as such has contributed to the oppression and marginalisation of people with disabilities (Bricher, 2000; Officer & Groce, 2009; Thomas, 2004). Practitioners of Western biomedicine have traditionally, and often continue to, reinforce the medical model of disability through their medical practice (Bricher, 2000; Gronvik, 2007), focusing on causes, consequences and treatment of the disabling conditions (Gronvik, 2007; Shakespeare et al., 2009). One must not forget, however, that people with disabilities do have health conditions and can often benefit from medical care.

The main limitation to the medical model lies not in its focus on medical conditions, but rather in its lack of focus on structural issues that contribute to disability, such as poverty, environmental barriers and social exclusion (Shakespeare, 2014; Shakespeare et al., 2009).

As a result of these criticisms, the past decades have seen a shift from disability viewed as a personal predicament, as in the biomedical model, to a more critical perspective, where disability is viewed as a social, cultural and political phenomenon (Goodley, 2011).

The social model of disability

In the 1970s, disability activists, particularly in the UK, began to challenge the individualistic, medical understandings of disability. One of the most influential disability groups at that time, the Union of the Physically Impaired Against Segregation (UPIAS) was most vocal in challenging the medical model of disability, stating that "it is society which disables physically impaired people. Disability is something that is imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from the full participation in society" (UPIAS, quoted in Barton, 1998, p. 56). This definition was developed further by disability academics, particularly Oliver (1986, 1990, 1996), to what has come to be known as the social model of disability. This model sees disability as a social construct, with physical and social barriers leading to lack or loss of opportunities preventing people with disabilities from taking part in everyday life on an equal level with others (Finkelstein & French, 1993; Harpur, 2012; Shakespeare, 2014). So, for example, a person with a physical impairment who makes use of a wheelchair, is disabled when they face an inaccessible building where stairs are the means of access. Or a person who is deaf, is disabled when they can only access specific information in audio format. From this perspective, disability is seen as a form of social oppression, where disability is understood as representing the "social, financial, environmental and psychological disadvantages inflicted on impaired people" (Abberley, 1987, p. 17). This arises from a social environment that is constructed by non-impaired people, and constructed in their interests (Abberley, 1998). People with disabilities may also face social barriers, resulting from social stigma and negative representations in the media (see Chapter 3 for a brief discussion in relation to film). In relation to the topic of this book, such stigmatising representations may be that of people with disabilities as non-sexual and undateable. According to the social model, it is not the individual that needs to be fixed and altered, but rather the social and physical environment that needs to be adjusted in order to meet the needs of persons with disabilities.

While the medical model is seen as having contributed to the oppression and marginalisation of people with disabilities, the progressive social model has been assumed to involve and empower people with disabilities (Bricher, 2000; Officer & Groce, 2009; Shakespeare, 2014; Shakespeare et al., 2009; Thomas, 2004). The limitation to the social model, on the other hand, lies in its lack of focus on the impact of impairment on disability (Thomas, 2004). Some theorists (Hughes & Paterson, 1997; Shakespeare & Watson, 1997) have criticised the social model of disability for excluding the lived experience of impairment. As argued by French (1993a, p. 17): "I believe that some of the most profound problems experienced by people with certain impairments are difficult, if not impossible, to solve by social manipulation." French distinguishes between her blindness, which she argues should be conceptualised as impairment, and her lived experience of disability, for example due to the availability of literature accessible largely to sighted persons. It has also been argued that the social model, with its origin in physical and sensory impairments, to a large extent neglects issues relevant for people with psychosocial and developmental disabilities (Chappell, Goodley, & Lawthom, 2001). Adding to this, the social model has been criticised for being too general in its approach to the human experience that disability is, with too little emphasis on the individual, contextual and cultural variations that shape these experiences (Dewsbury, Clarke, Randall, Rouncefield, & Sommerville, 2004; Shakespeare, 2014).

The psychosocial model of disability

As with other theorists criticising the social model of disability, Marks (1999a, 1999b) argues that the social model of disability excludes people's subjective experience from its analysis of disability. She develops a psychosocial model of disability by arguing that "disability" involves a relationship between the environment and the body as well as the person's psyche. She insists that "disability does not reside in a particular body or environment, but rather is an embodied relationship" (Marks, 1999b, p. 611). In theorising the psychological aspects of the model, she draws predominantly on psychoanalytic theory to argue how prevailing negative stereotypes and social and cultural oppression of people with disabilities are internalised by the person with disability to become an embodied experience. In psychoanalytic theory "internalised oppression" (like internalised homophobia) can be read by some as pathologising, in that it places the "problem" of oppression in the internal psychology of the individual (Russell & Bohan, 2006). Oppression of course, exists in the external realities, but the usefulness of this psychosocial approach is that it allows us to understand how these experiences can be incorporated, or indeed rejected, by the individual, shaping their sense of self.

Marks (1999a) provides a review of the historical representations of persons with disability. For example, she refers to the representations of superstition and divine punishment with regards to persons with disabilities during the Middle Ages (see above discussion on the moral model of disability). In later years, people with disabilities were exhibited in public shows as "freaks" and objects of curiosity, the "Elephant Man" being a famous example of this. She also refers to the disturbing history of eugenics, euthanasia and even the systematic murder of people with disabilities during the 1940s in Nazi Germany. Marks uses these examples to illustrate the fear and revulsion often expressed towards people with disabilities, seen as sub-human monsters. Thankfully, we do not live in those times anymore, but what she argues is that the response (often unconscious) of fear, deformity and monstrosity towards many people with disabilities still prevails. This is evident in the prevalence of everyday hate crimes towards persons with disabilities.

Drawing on psychoanalytic theory, Marks (1999a) and others argue that unacceptable parts of the self, such as the notion of dependency, physical imperfections and damage, helplessness and vulnerability, may be disavowed or split off by the person without disabilities, and located in the person with disability (Marks, 1999a; Shakespeare, 1994; Watermeyer, 2013). In psychoanalytic terms, this process of disavowal is done in an attempt to protect the self against such threatening aspects of human experience. As Marks (1999a) and many others argue, we live in an increasingly narcissistic culture, where individuals strive for perfection, independence and achievement. As Shakespeare (1994, p. 297) states, persons with disabilities "remind non-disabled people of their own vulnerability". There is a denial or disavowal on the part of people without disabilities of their physical vulnerabilities and mortality, which is then projected onto people with disabilities who come to represent this vulnerability, becoming "dustbins for disavowal" (Shakespeare, 1994, p. 283). Watermeyer (2006) points out how we have all at some stage of our lives had experiences of vulnerability, dependence, shame, rejection, inadequacy and feeling undesirable, ugly and unacceptable. He goes on to argue that "by constructing and regarding disabled people as broken, damaged, defective and dysfunctional, members of the broader nondisabled society are able to reaffirm and reinforce an identity of being the opposite of those unwanted characteristics" (Watermeyer, 2006, pp. 33.34). Marks (1999a, p. 25) notes "denigration and exclusion as the two key forms of psychic oppression suffered by disabled people", which are then internalised by some people with disabilities and impact on their self-esteem, and may often keep people with disabilities submissive. Sinason (2001) refers to a "secondary handicap" that occurs, which she refers to as the "defensive, extra-handicapping that comes from the emotional pain at being different"; of being the "other" (p. 2). According to these theorists, the person with disability can be locked in a dynamic interrelationship with others who do not have disabilities in an attempt to manage the anxieties that the disabilities cause. In sociology, this is similar to what Goffman (1963) refers to as the management of a stigmatised identity. French (1993b) provides a good personal example of this: She describes how family members would anxiously try to get her to see things, to see a rainbow, for example. This she felt was out of an attempt to manage their own fear and anxiety with regards to her increasing loss of colour vision. She describes how she eventually attempted to alleviate others" anxieties, by declaring that she could see, denying the fact that she could not.

In contrast to the sort of denigrating process of projection described above, psychoanalytic theory has also been useful in describing the idealisation of persons with disabilities as a defensive process (Marks 1999a; Watermeyer, 2013). In idealisation, the unwanted fears and underlying denigration are defended against by a process of idealisation where the disabled person is attributed with excessive positive aspects and admiration. There are many instances where we are called to admire the achievements of people with disabilities and how they have overcome their personal tragedy. This idealisation can be seen in the everyday prevalence of what some have termed "inspiration porn", where stories of "heroic" individuals who have overcome their personal tragedy of disability are admired. The term was used by disability activist Stella Young (2014) . she gives an excellent TED talk about this that is worth seeing (gI"m not your inspiration thank you very much"). We can observe this in reference to the "superhuman" Paralympian, for example. Young (2014) states how this only serves to objectify people with disabilities for the benefit of people without disabilities to make them feel better about themselves.

For Reeve (2002, 2012, 2014), internalised oppression arises not only from the relationship that people with disabilities have with others, or themselves (which she calls "direct psycho-emotional disablism"), but from the relationship they have with their environment, termed "indirect psycho-emotional disablism". She does not draw on psychoanalytic theory (in fact she is quite critical about psychotherapy, because of its individualist tendency), but rather comes from a more discursive position, noting that psycho-emotional disablism is caused by oppressive social practices, including the oppressive discursive actions exercised by society on people with disability. She also notes that the experience of being faced with a structural barrier, such as an inaccessible building, may evoke negative emotions like anger or distress. Moreover, inaccessible environments are a frequent experience for people with disabilities and may prevent them from accessing vital services such as sexual and reproductive health care (Anderson & Kitchin, 2000). Kitchin (1998) argues that such repetitive experiences serve to remind people with disabilities that they are "out of place", which Reeve (2012) suggests has consequent negative implications for their sense of self and emotions. What the social psychoanalytic approach (Watermeyer, 2013) provides is a model for understanding how these discursive oppressive relationships get internalised.

Cultural disability studies

While the medical and social models for disability have remained the most influential and most debated models for disability, other suggested models have also emerged over the years, such as the tragedy model, the affirmative model, the charity model (Swain & French, 2000), the minority group model, the social constructionist model and the relational model (Shakespeare, 2014). It is beyond the scope of this chapter to discuss all of these. A common characteristic to most of these models is that they have moved away from the individualistic, medical view of disability, towards a view promoting social inclusion for people with disabilities (Shakespeare, 2014). One important limitation to the models described so far that is important to highlight is that issues of culture and identity have been relatively neglected (Shakespeare, 2014). The argument has been made that these disability models, largely developed in the global North, contribute to the marginalisation of the disability experience in the global South (Meekosha, 2011). The cultural perspective, extensively covered in the field of cultural disability studies, tends to move away from economic questions while focusing on the cultural representations of disability. The weakness of this field, however, has been said to be that it speaks more to academics than to advocates and policy makers, and as such has not been influential on the political disability agenda (Shakespeare, 2014). All societies have complex belief systems and cultural interpretations related to disability, which are as important in shaping the disability experience as the specific health condition related to the disability (Groce, 1999; Gronvik, 2007). For instance, in many African cultures people base their disability understandings on local knowledge systems, where mental and physical impairments are attributed to animistic causes, such as witchcraft, ancestors" anger, breach of taboo or punishment from God (Braathen & Ingstad, 2006; Groce, 1999; Groce & Zola, 1993; Helman, 2007; Ingstad, 1995, 1997, 1999; Ingstad, Bruuns, & Tlou, 1997; Ingstad, Munthali, Braathen, & Grut, 2012; Kleinman, 1980; Munthali, Braathen, Grut, Kamaleri, & Ingstad, 2013; Ross, 2008; Sentumbwe, 1995; Whyte & Ingstad, 1998). Adding to this, disability is sometimes thought to be contagious (Braathen & Ingstad, 2006; Smith, Murray, Yousafzai, & Kasonka, 2004). With these beliefs and interpretations follow assumptions about how individuals with disabilities should be treated and what rights and responsibilities they have (Groce, 1999). These beliefs and assumptions have in some instances led to people treating the disabled individual in a positive, mythical and elevated manner, or on the other hand, in a fearful, disrespectful and excluding manner (Braathen & Ingstad, 2006; Groce, 1999; Whyte & Ingstad, 1998). The treatment is largely dependent on whether the attribute of disability is a valued or devalued attribute in that particular setting, context and culture (Groce, 1999). We will return to discuss culture again briefly in Chapter 3.

The biopsychosocial model of disability

Based on the argued shortcomings of the disability models described above, an attempt at a more balanced approach to understanding disability has been developed over the past two decades (Leonardi, Bickenbach, Ustun, Kostanjsek, & Chatterji, 2006; WHO & World Bank, 2011), presented in the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001). The ICF conceptualises disability as both a social and medical construct, a dynamic interaction between health conditions and contextual factors; both personal and environmental (WHO & World Bank, 2011), and as such integrates components of the medical and social models for disability, as well as cultural disability studies (Shakespeare, 2014). This model for disability is known as the "biopsychosocial model" (WHO, 2001). In the World Report on Disability (WHO & World Bank, 2011, p. 4), based on the ICF, disability is described in the following way: "Disability is the umbrella term for impairments, activity limitations and participation restrictions, referring to the negative aspects of the interaction between individual (with a health condition) and that individual's contextual factors (environmental and personal factors)." It has been argued that the ICF is theoretically underdeveloped, and does not adequately explore the complex dynamics between health conditions, individual characteristics, social and cultural context and so on. It has been criticised for failing to fully acknowledge and account for distinctions between "activity limitations" and "participation restrictions" and also between "impairment" and "activity limitation" (Bickenbach, 2012; Davis et al., 2012; Imrie, 2004; Shakespeare, 2014). However, others argue that the framework is the definition that best captures all aspects of disability. It highlights the interactive and dynamic nature of disability; acknowledging both individual health status as well as personal and environmental factors in the disability experience (Leonardi et al., 2006; WHO & World Bank, 2011). The definition is seen as a contributor to equal rights, opportunities and participation in society for people with disabilities (Leonardi et al., 2006).

Because the disability experience is shaped both by the social context as well as by medical conditions, disability is essentially a human rights issue as well as a medical concern (Groce, 1999; Officer & Groce, 2009). All human beings are protected by the Universal Declaration of Human Rights (United Nations, 1948). Despite this, people with disabilities have been, and continue to be, denied many of their basic human rights (Harpur, 2012; Officer & Groce, 2009). In 2006 the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was developed (United Nations, 2006). The convention is perceived by many as a shift in how disability is viewed, and as a major step forward for people with disabilities (Meekosha & Soldatic, 2011). The purpose of the convention is to "promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity" (United Nations, 2006, p. 4). In the convention, disability is defined the following way: "Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others" (United Nations, 2006, p. 4). While the UNCRPD is based on the ICF (Officer & Groce, 2009), it has been argued that the definition of disability adopted by the convention is too medical, restricted to people with long-term impairments, while ignoring level of social participation. As a result, the convention risks excluding a number of short-term, fluctuating or episodic impairments (Leonardi et al., 2006). Adding to this, it has been argued that the convention is largely influenced by disability discourses of the global North, and as such fails to sufficiently address experiences of people with disabilities in the global South (Meekosha & Soldatic, 2011). There are well-established associations between disability and poverty, poor health outcomes and poor access to health and social services, education and employment; all of which are far more pronounced and prevalent in the global South than in the global North (Eide & Ingstad, 2011; Elwan, 1999; Groce & Trani, 2009; WHO & World Bank, 2011). It has been argued that one cannot separate disability from other social and health issues, and that disability issues cannot be appropriately addressed without also considering issues of global power and wealth imbalances (Grech, 2009; Soldatic, 2013). As outlined in Chapter 1, most people with disabilities in the world live in relative poverty.

The biopsychosocial model may offer a useful route to understanding the complex ways in which people with disabilities may express their sexuality, or be prevented from doing so by individual, structural or social barriers. Recent definitions of sexuality, such as that provided by WHO (2006a), position the ability to lead a healthy sexual life as a human right for all. Similarly, the biopsychosocial model acknowledges that disability is partly created by social factors, thereby framing it as a human rights concern (Groce, 1999; Officer & Groce, 2009). Therefore, this model provides a useful heuristic device by which to understand the ways in which the sexual lives of people with disabilities are variously facilitated and obstructed around the globe. However, the biopsychosocial model does not go far enough to question assumptions of "normality" and "abnormality" and thinking more about the context of disability. This, for us, is particularly important when challenging normative assumptions about sexuality, and what is "normal" and "abnormal" sexuality. In that respect, crip theory offers us a valuable framework to critique assumptions.

Crip theory

The foregoing models that offer a critical perspective to disability (in contrast to the medical model) all conceptualise disability as a construction dominated by barriers, the experience of which prevent people with disabilities from participating fully in society. On the other hand, the aim of crip theory, first proposed by McRuer (2006), is to radically challenge the demarcation between what is considered "normal" and "abnormal". In doing so, crip theory asserts the existence of a distinct disabled identity and culture, whose members must challenge pejorative terms applied to people with disabilities and appropriate them. This is why the theory's name is shorthand for the term "cripple", an intensely offensive term for a person with a physical disability. That is, the usage of "crip" is designed to be provocative and present a route of attacking stigmatised constructions of disability through labelling oneself a "crip" as a badge of pride. Crip theory is situated squarely within critical disability studies and has been described as providing one of the most valuable insights within the discipline (Goodley, 2014).

Crip theory combines the fields of disability studies and queer theory. However, while both theories aim to trouble constructions of normality, crip theory shifts the focus from the demarcation between heterosexuality and homosexuality to the one that exists between the abled and functionally impaired body (Lofgren-Martenson, 2013). McRuer (2013) argues that both sets of constructions are interwoven with one another, that "abnormal" is contextualised by what is"normal" and vice versa. This does not mean that normal and abnormal identities are situated as equals, but rather denotes that what is institutionalised as "normal" thereby also subjugates what is considered "abnormal". He further argues that the existence of normalcy within these systems produces compulsion to belong to the dominant category (i.e. heterosexuality, the able body), while, at the same time, the obverse desire to avoid association with the subordinated categories (i.e. homosexuality, the functionally impaired body) also acts on the individual. Therefore, the appearance of choice, for example in terms of sexual preference, is viewed as an illusion to mask compulsion towards normalcy. These phenomena are known as compulsory heterosexuality and compulsory able-bodiedness within queer theory and crip theory respectively (McRuer, 2013).

Theorists within queer disability studies argue that there is much to learn from the intersectionality embedded within a queer/disabled existence (e.g. Goodley, 2014; Sherry, 2004). In this vein, it has been highlighted that queer identities share a common history of medicalisation with disabled identities, for instance, that homosexuality used to be considered a disorder, and thus a "disability" (McRuer, 2013). As such, viewing those with queer identities as disabled may pave the way to trouble constructions of able-bodiedness. Similarly, people with disabilities are often viewed as non-sexual or hypersexual (assumptions we will revisit in Chapter 3), identities that are "queer" compared to the institutionalised norm of heterosexuality. Such queering helps disabled identities challenge this dominant pathology. For McRuer (2013), a queer/disabled existence will never manage to dissipate constructions of normalcy. He suggests such constructions are ultimately impossible to embody, and that rather it is the disabled identities that are inevitable, given that able-bodiedness is temporary and may be lost with age. However, as marginalised identities themselves are necessary for dominant identities to exist within such systems, a queer/disabled existence is always in danger of disrupting normalcy.

We are now in a clearer position to appreciate how crip theory critiques what other models of disability take for granted, namely that there is a "normal" existence that people with disabilities are somehow excluded from. The dialogue of crip theory is emancipatory, which Sykes (2009, p. 250) terms a "narrative of attack". However, as we have seen above, its aim is not to eradicate constructions of normalcy, which McRuer (2013) deems impossible, but to demand a reappraisal of able-bodiedness and to build transformative space in which social participation does not rest on the functional body. In this respect, Goodley and Lawthom (2011) recount the example of a youth with a disability, Alex, discussing sexual topics, such as masturbation and girls he is attracted to, with his mother, Isobel. They suggest that such exploration of material conventionally located in private spheres challenges typical discourses that surround disabled and youthful bodies.

Notwithstanding crip theory's usefulness to disability studies, it has been criticised for not offering a similar emancipatory discourse to people with intellectual disabilities (Lofgren-Martenson, 2013). That is, crip theory has tended to be written mostly from the perspective of physical disabilities and challenging assumptions of normality and the body; crip theory does not draw a distinction between types of disability (see McRuer, 2006, 2013). Furthermore, given that the aim of crip theory is to galvanise people with disabilities who can understand their situation, the applicability of crip theory in general to people with intellectual disabilities has been questioned (Lofgren-Martenson, 2013).

Concluding comments

We have outlined some of the many models for understanding disability. What do models of disability mean for people with and without disabilities? And which one is right? Researchers have argued that explanatory models for disability are crucial in limiting or ensuring the realisation of human rights for people with disabilities (Bricher, 2000; Harpur, 2012; Siminski, 2003). The models provide a starting point for disability-related research, practice, theory and everyday living (Chappell et al., 2001). Moreover, any two individuals may find that different models of disability resonate with them, especially if they are living in different areas of the world. For instance, although the moral model is considered outdated by many, it is still the dominant conception of disability within several cultures. Our intention in presenting this overview of models of disability is to equip you, the reader, with the knowledge necessary to understand disability in a way that is meaningful to you.

Note 1: Parts of this chapter are adapted from the PhD theses of Stine Hellum Braathen and Poul Rohleder.


CHAPTER 3

DISABILITY, IDENTITY AND "VULNERABILITY'


In Chapter 2 we looked at the various models for understanding disability, and we highlighted the important role played by the socio-cultural (and political) environment in the experience of disability. As discussed in Chapter 1, although we refer to "persons (or people) with disabilities" throughout this book, this is by no means a homogenous group. The models outlined in Chapter 2 give us useful theoretical frameworks for understanding the concept of "disability", but mostly deal with generalities. Thus, in this chapter we explore the various socio-cultural understandings of disabilities and their intersection with other identities (e.g. gender, sexual orientation, ethnicity, culture and place). We look at how these socio-cultural understandings shape lay views of the sexuality of people with disabilities. The chapter will outline traditional and existing constructions of people with disabilities as asexual, or as sexually disinhibited and "dangerous". The chapter will further outline how constructions of otherness, such as genetic impurity, have often been used to justify oppressive practices like involuntary sterilisation. These constructions will also be explored in relation to gender, sexual orientation, ethnicity, culture and place. These are all big subjects in their own right, so the chapter only aims to provide an introductory discussion of these constructions, focusing specifically on what they mean for sexuality and sexual health.

Social constructions of disabled sexuality

Sexuality refers to the way in which people express themselves as sexual beings. The World Health Organization defines sexuality as:

a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. (WHO, 2006a, p. 5)

Sex and sexuality may be seen in terms of biological issues . bodily desire, sexual arousal and so on. However, as many social theorists (e.g. Weeks, 2010) point out, our ideas, thoughts and notions about sex and sexuality are socially constructed and involve issues of power and control. There are many people and societies who have strongly held opinions about who should have sex and with whom; how people should have sex and why; when and where people should have sex. It is beyond the scope of this chapter to explore the discussion on sexuality further, but what is important for our purposes is that such constructions about what is acceptable and unacceptable or what is "normal" and "abnormal" when it comes to sex and sexuality have a significant impact on the oppression and experience of people with disabilities. As pointed out by Anne Finger, a woman who experiences a physical disability, "sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain" (Finger, 1992; p. 1). Disability and its stigma may further exclude people with disabilities from a "sex life", and the sexual activities of some people with disabilities may be "different" to the normative assumptions about sex (Siebers, 2012).

One of the prevailing myths that exist around disability and sexuality is that people with disabilities have diminished sexual needs or are asexual (Esmail, Darry, Walter, & Knupp, 2010; Milligan & Neufeldt, 2001). While there is little empirical evidence that people with disabilities are literally considered to be asexual, the findings of many studies indicate that people with disabilities are treated as asexual to some degree (Milligan & Neufeldt, 2001). Such myths tend to be more prominent for people with physical disabilities and people with learning (intellectual) disabilities. For instance, people with physical disabilities may be perceived as being asexual because they are considered by others to have absent sexual needs, be physiologically incapable of having sex, or lack the opportunity to engage in sexual gratification. On the other hand, people with learning disabilities are often thought to lack the capacity to engage in sexual relationships (Craft, 1987; Milligan & Neufeldt, 2001). We are not talking here about capacity to consent, which is a legal consideration; what is being referred to is that they are often perceived as "forever children" rather than as individuals with adult bodies, sexual desires and needs (Craft, 1987). This is also not to say that asexuality as an identity is a myth, but rather that people with disabilities are regularly assumed to be asexual, regardless of whether they identify as such or not.

These constructions of disability and sexuality centre on assumptions of the (dis)ability to have sex. Some people with disabilities (typically psychosocial disabilities or intellectual disabilities) may also be perceived as sexually "dangerous", as their behaviour may be understood as being disinhibited and out of control. Aside from these reasons, non-disabled people may hold other beliefs about people with disabilities, which make them unwilling to pursue intimate relationships with or even date people with disabilities. For instance, studies conducted with American college students suggest that many would hold concerns about becoming romantically involved with somebody who uses a wheelchair. These include the perception that a person with a disability would require too much caregiving, would fall sick too often, or simply that it would be too awkward to interact socially with them (Marini, Chan, Feist, & Flores-Torres, 2011; Marini, Wang, Etzbach, & Del Castillo, 2012). These societal prejudices may be related to other universal beliefs about people with disabilities, for example that they are incompetent and dependent (Fiske, Cuddy, Glick, & Xu, 2002; Nario-Redmond, 2010).

A relatively recent study from the USA by Nario-Redmond (2010) asked men and women with and without disabilities to make stereotypic attributions about their own group, as well as members of the other group (disabled/non-disabled and women/men). She found that constructions of asexuality were applied by participants to both men and women with disabilities, but not to men and women without disabilities. Furthermore, attributions consistent with stereotypic gendered conceptions of sexuality were attributed to both non-disabled men (e.g. macho, dominant) and women (e.g. attractive), while people with disabilities generally received the polar opposite of these traits (e.g. weak, unattractive). This intersection with gender will be discussed briefly below. But what Nario-Redmond (2010) suggests is that asexuality is a pervasive stereotype that is applied universally to people with disabilities of both genders. This may be one explanation why many non-disabled people report never having been on a date with someone who has a disability. For instance, a survey by a British disability charity found that just 5 per cent have ever been on a date with a person who has a disability (Scope, 2015).

Societal perceptions of the asexuality of people with disabilities constitute a myth because empirical research has generally shown that people with disabilities are as sexually active as people without disabilities (e.g. Cheng & Udry, 2002; Maart & Jelsma, 2010; Suris, Resnick, Cassuto, & Blum, 1996) and have the same sexual desires and needs (e.g. Cheausuwantavee, 2002). The findings of some studies have even suggested that people with disabilities are sexually active at a younger age. For instance, Brunnberg and colleagues (2009) investigated the sexual behaviour of 3,084 adolescents who were attending mainstream school in Sweden, finding that adolescents with disabilities reported a younger age of sexual debut than did adolescents without disabilities. While evidence of this type is important in challenging constructions of asexuality, it also serves to highlight some of the risks adolescents with disabilities may experience. For example, it is more common for adolescents with disabilities to lose their virginity under circumstances of force (Brunnberg, Bostrom, & Berglund, 2012; Suris et al., 1996), which Brunnberg et al., (2009) suggest may explain their findings. This will be explored further in Chapter 5, which discusses sexual abuse and exploitation.

Historically, the reproduction of women with disabilities was managed through "sterilisation abuse" (Sheldon, 2014, p. 73). Many Western countries enacted national sterilisation programmes for women with intellectual disabilities with the ostensible purpose of ensuring that they did not have children with intellectual disabilities. However, this is another myth, as intellectual disabilities are not generally passed on to offspring. Sterilisation is still practised today, and many more women (and men) with disabilities are discouraged from having children (Sheldon, 2014). We will revisit this in Chapter 7 when discussing access to sexual and reproductive health care.

We need not look only to empirical research to find illustrative examples of problematic notions of disabled sexuality. There is much social evidence available in the way that disability and sexuality has been portrayed in TV and film. Unfortunately, in many of these cases, popular media representations of people with disabilities in romantic situations have reinforced negative constructions of their sexuality. As the example discussed below will show, this continues today.

Case example: disability and sexuality in the film 'Me Before You'

Me Before You is a film that was released in the UK in the summer of 2016. It tells the intertwined stories of a wealthy young man, Will, who is living with paralysis from a motorcycle accident two years earlier and a young woman, Louisa, who, looking for employment, becomes his carer. The film is purported as a romance story and, as might be expected from this genre, chronicles Will and Louisa's closeness and gradually developing intimacy for one another. However, the similarities between Me Before You and romance films featuring people without disabilities are few and far between. Notably, the film ends with the death of its hero. Will, bitter and angry at his new life as a person with a disability, decides to commit assisted suicide. Louisa is heartbroken, but opens a posthumous letter from Will that includes enough money to continue her education and live comfortably.

Although a relatively popular film among the general public, many people within the British disability community reported feeling that Me Before You and certain pieces of coverage surrounding it conveyed a troubling message about disabled sexuality, as well as the nature of disability itself. One article by the Guardian led to particularly strong criticism from some with disabilities. It reported that director Thea Sharrock conceptualised the central issue of the film as what might make life worth living for wheelchair users (Thorpe, 2016). In light of the resolution of the film (and the book it is based on), which depicts Will pursuing euthanasia, this could be construed as a disconcerting indication of the societal perception of disability both as something to be pitied and something perceived as impossible to overcome.

The controversy surrounding Me Before You is also illustrative of the gap between the way society views disabled sexuality and the sexual experiences that people with disabilities actually have. Ultimately, people with disabilities have the same sexual needs and desires as people without disabilities. Although negative attitudinal and structural barriers concerning sexuality exist, many people with disabilities are able to circumvent these and go on to lead happy and fulfilling sexual lives. The way people with disabilities are represented (by Will) in Me Before You is therefore problematic because the film shows very little of the normative experiences of disabled sexuality. Instead, what is emphasised is the perceived incompatibility between disability and romance, which many people with disabilities and their partners may feel is inaccurate. In light of this, the negative reaction that many people with disabilities in the UK have had to Me Before You is more understandable. As one reader commented bluntly in response to the Guardian article about the focus of the film: "What is [it] saying? Wheelchair users might as well go and kill themselves? I am a wheelchair user. My wheelchair does not confine me; it gives me independence" (cited in Pritchard, 2016, para. 8).

Not all depictions of disability and sexuality within the media are negative, however. One film, Rust and Bone (2012), sees a young woman adjusting to the loss of her legs, and chooses to portray her as an erotic and sexually active individual. Another, The Sessions (2012), won praise for its accurate representation of memoirist Mark O"Brian's experience of using a sex surrogate while in an iron lung (Samuels, 2013). This latter film also engages with a contemporary debate surrounding the lives of (some) people who have a disability, namely the acceptability of using sex workers. This is a complicated and contested debate that is the subject of both condemnation (e.g. Martin, 2014) and advocacy (e.g. Owens, 2013). We will return to this topic in greater detail later in this chapter.

Generally speaking, negative and unrepresentative portrayals of people with disabilities in film are troubling because media portrayals can direct societal attitudes as well as reflect them (Milligan & Neufeldt, 2001). This issue is further problematised by the fact that when disability is explored on film and TV, studios tend to recruit non-disabled actors to play roles involving people with disabilities. The net result of these practices is that portrayals of disability on screen often reflect the conceptions that people without disabilities possess, rather than conveying the nature of disability as experienced by people with disabilities themselves. We encourage you to think of other depictions of disabled sexuality on film and TV. How far do you think they accurately reflect the experiences of people with disabilities?

Disability, gender and sexuality

Disability also intersects with hegemonic understandings of femininities and masculinities and what it means to be a "real" man or woman. For example, hegemonic constructions of femininity can serve to further marginalise women with disabilities. Sheldon (2014) argues that women with disabilities may be perceived as having the stereotypically feminine traits of being dependent and needy, but lacking the feminine traits associated with appearance, childbearing and motherhood. Beliefs about women with disabilities being unable to have children or be able to look after children seem to be quite common, and women with disabilities may be discouraged by others from becoming pregnant (Nguyen, Liamputtong, & Monfries, 2016). In a study of people with disabilities in a rural region of South Africa (McKenzie, 2013) the women interviewed spoke of the painful messages they received about their presumed inability to have sexual relationships, and have children. Two women who did have children spoke about how their family members pressured them to hand their children over to them for looking after, because the family members felt they were not capable of looking after the children. A study of women with disabilities in Nigeria (Afolayan, 2015) reports on the women's experience of being perceived mostly as asexual, helpless and incompetent, and how this casts them as undesirable in the eyes of men. As one of the women is quoted as saying, "just because I am disabled and my brain doesn"t work effectively does not indicate my vagina does not work" (p. 60). The women spoke about feeling invisible, like a "ghost". Women with disabilities have also possibly been marginalised within feminist movements. Sheldon also goes on to quote Fine and Asch's (1988) argument that the perceptions of females with disabilities as helpless and dependent have meant they are largely ignored by the feminist movement that wanted to advance a perception of women as strong and independent.

For men with disabilities, perceptions of their weakness and dependence are pitted against hegemonic understands of masculinity as involving strength and independence (Robertson & Smith, 2014). For example, masculinity is often associated with notions of "potency and action" and disability, particularly when it is acquired, can be experienced as a kind of emasculation (Nolan, 2013; Robertson & Smith, 2014). In a study from the USA of men with spinal cord injuries (Ostrander, 2008), the men spoke of their acquired disability having "taken a bit of their manhood away", particularly when it came to sex. Some men, however, reported that once they realised they were able to still sexually please their partners, they began to reclaim some sense of masculinity. In Canada, Gibson and colleagues (2007) found how men with muscular dystrophy interviewed in their study struggled with some notions of masculinity, particularly when it came to dating and intimate sexual relationships. The men in their study felt that they could not match the traditional roles ascribed to "normal" masculinity, which included actively sexually satisfying women.

In a research project on disability and sexuality in South Africa that the authors of this book are currently conducting,1 we interviewed seven men and six women with physical disabilities (see Hunt, Braathen, Swartz, Carew, & Rohleder, 2018). The men spoke about sexuality as strongly connected to notions of masculinity, and being an "adequate" lover able to "pleasure" their female partner (all participants were heterosexual men). Many emphasised the importance of sexually "pleasing" their partner, because some felt that the risk was that their partner would leave them for a "better" lover. One man we interviewed, found this a particular challenge to navigate, saying that his disability made him feel like "half a man". For the six women we interviewed, their experience of sexuality was strongly connected to romantic love, building a family and being a mother. They spoke about feeling that many men do not see them as sexual beings, because the men think that they will not be able to have children and be good wives due to their disability. Two of the women in our study did have children. One of the women struggled for many years to get pregnant, finally getting pregnant with the help of IVF. There was some anxiety about their disability and having a child, with the one woman reporting that she wondered whether a slight spinal problem of her daughters, was due to her own disability and carrying a child as a wheelchair user.

As part of the project, we also investigated social perceptions of the sexuality of people with disabilities. In a survey study, we asked respondents to respond to a vignette about a non-disabled person thinking about dating a person with disabilities; asking respondents to report on their thoughts, feelings and imagined reactions. The responses indicated a prevalence of some positive and inclusive responses, but many negative responses to the idea of dating someone with a disability, such as feelings of pity, desexualisation, and even disgust (Hunt, Swartz et al., 2018).

While we refer above to constructions of masculinity and femininity and disability, we should, as Shuttleworth and colleagues (2012) point out, be mindful not to rely on these intersections of masculinity (and femininity) and disability as static "truths", which tends to draw on a generic categorisation of "disability". We should rather seek to understand the intersection of masculinities (and femininities) with disabilities. It is beyond the scope of this section to do that adequately here. What is important to note, is Shuttleworth and colleagues" (2012) observation that much of the literature looking at masculinities and disability has tended to focus on men who have acquired a disability, typically through a spinal cord injury, and thus seeing an acquired disability as a point of crisis for the masculine identity. They go on to say that this may be because in the public imagination, people with acquired impairments are seen as having more similarities with the imagined normal body; imagined for its unblemished perfection. Garland-Thomson (2009, p. 45) refers to this as the "phantom figure of the "normate"", against which persons with disabilities are pitted. People born with early-onset impairments are more likely to be perceived as having more bodily abnormalities. Shuttleworth and colleagues (2012) argue that this may reflect a gendered bias towards examining the masculinity dilemma of "real" men who have acquired an impairment and as a consequence lost their masculinity. Similar arguments can be made for women and femininities. Thus an interesting study is looking at masculinity and the development of a sexual identity from the perspective of men who were born and grew up with a disability (see case example below).

While much research has focused on the impact of (physical) disability and sexual function, relatively less has focused on the impact of disability on sense of self as a sexual being. The studies that do, suggest that people with disabilities may feel unattractive and lack self-confidence (Nguyen et al., 2016). In a UK study involving men and women with congenital or acquired limb absences (Batty, McGrath, & Reavey, 2014), the participants reported significant anxieties about themselves as sexually attractive and desirable. Similar concerns about being sexually unattractive and undesirable to others were found in other studies in the USA among women (White, Rintala, Hart, & Fuhrer, 1993) and men (White, Rintala, Hart, Young, & Fuhrer, 1992) with acquired physical disabilities as a result of a spinal cord injury. For many, feelings about sexual desirability are intermingled with feelings of loss and shame about one's body and being perceived as unattractive to others and oneself (Galvin, 2005; Taleporos & McCabe, 2002). Some studies show how some men and women may desire a sexual relationship, sometimes any sexual relationship, so as to feel accepted and as a symbol of "normality"(e.g. Liddiard, 2014; Rohleder, 2010b; Wazakili, Mpofu, & Devlieger, 2006).

While the above literature reports this as the experience of people with disabilities, it is important to pause for a moment and note that this is not the experience of all people with disabilities. Many do not see themselves in this way and in fact these notions of people with disabilities as feeling sexually unattractive and undesirable because they have body image issues may also occur as a social construction generalised to all people with disabilities (see Siebers, 2012, and a further brief discussion below). For example, in Galvin's (2005) study, some participants spoke about renegotiating sex and sexuality, finding innovative and intimate ways of enjoying themselves sexually with their partners beyond the norms of penetrative sex.

There may also be gendered constructions about what are issues of concerns when it comes to disability and sexuality. In a review of topics addressed in the published research literature on men and women with learning disabilities, Wilson and colleagues (2010) observed a tendency for research on men and boys tending to focus on topics that problematise sexuality (males with learning disabilities having inappropriate sexual behaviours) and health promotion (including pregnancy) for women and girls with learning disabilities. It is difficult to draw substantive conclusions from this, as this may reflect actual concerns for the persons with learning disabilities participating in the studies reviewed. However, Wilson and colleagues (2010, p. 8) do suggest that "gendered issues for males appear to be viewed more on a behavioural risk hierarchy which reduces males to their behaviours at the expense of wider health promotion, individuals, and the context in which they live".

What is clear, is that the stigma of disability and the many misconceptions about disability and sexuality results in some social isolation and exclusion from participation in relationships and sexual relationships. Women with disabilities may experience this more acutely, reporting experiencing many challenges in forming lasting relationships (Hanass-Hancock, 2009; Kiani, 2009), and more likely than men with disabilities to be single, separated or divorced (Hanna & Rogovsky, 1991).

Case example: the sexual intimacy experiences of men with cerebral palsy - a study from the USA

Shuttleworth (2000) conducted an anthropological study of the experiences of 14 men from San Francisco, California, aged between 18 and 51 and born with cerebral palsy. He conducted a series of life history interviews with the 14 men, focusing on their history of intimate and sexual relationships and also interviewed 17 "relevant others", such as partners, parents or personal assistants, so as to get their perspectives on the sexuality of the 14 men. Of the 14 men, 12 were exclusively heterosexual, 3 were black and 11 were white. They all had some mobility difficulties, with 11 men using wheelchairs, and 11 of the men also had speech impairments. The findings from the study identified a number of key issues and barriers to sexuality. All of the men reported on their difficulty in meeting social expectations, not only of their bodily functioning, but also social expectations of attractiveness and sexuality. Looking back on growing up, the men spoke of their experience of "socio-sexual isolation" (p. 265) from adolescent social contexts, and thus opportunities and experiences to develop sexual intimacy with others. This was also coupled with negative messages from parents with regards to their future sexual life and marriage possibilities. The men also spoke of the lack of role models of people with disabilities in the media affecting engagement with issues of sexuality and intimacy. They also spoke of the media's influence on creating the perceived cultural ideals for bodily attractiveness; ideals that they felt were out of their reach. Most of the heterosexual men felt that the possibility of a sexual relationship developed from a friendship with a woman, but that this could also act as a barrier and a symbol of asexuality and rejection when the friend did not want to develop the friendship into a sexual relationship. The men also talked about their difficulties initiating sexual intimacy in terms of gendered social expectations, where men are often expected to demonstrate intimacy by initiating a kiss, or holding hands or embracing their dates, which some men could not easily manage to do. As a consequence, Shuttleworth (2000) argues that the men felt "intersubjectively immobilized" (p. 271), as they felt unable to act on their intentions to try and develop sexual intimacy with someone, both physically, but also because of the social expectations and norms that acted as barriers. While most men were able to eventually become sexually engaged, most felt immobilised to the point of becoming sexually disengaged at some point. Some reportedly became somewhat asexual as they attempted to block off their sexual desires, because they felt out of reach, or in an effort to avoid frustration and disappointment. One man was reported as saying that he did not feel he had any "maleness", and that he felt "blocked" when it came to women, who just wanted a friendship with him (p. 272). Shuttleworth (2000) claims that those men who were able to draw on more diverse repertoires of masculinity were able to become more engaged in sexual intimacy. In his analysis, he argues that those men who conducted themselves along the hegemonic masculine ideals "remained immobilized" (p. 277). In contrast, those men who conducted themselves according to alternative masculine ideals of interdependence, developing a friendship and emotional intimacy that later grew more sexually intimate and allowing the women to initiate the first moves, were more able to engage in sexual intimacy.

Disability, ethnicity and culture

Disability also intersects with other identities that may add layers of disadvantage. For example, people with disabilities from ethnic minority groups may experience the double disadvantage of inequalities based on culture and ethnicity as well as their experience of disability (Hussain, 2014). There is little research that looks at the intersection of disability, race and ethnicity and sexuality specifically; ethnic minorities are found to be under-represented in the disability and sexuality literature (Greenwell & Hough, 2008). However, there are various issues related to being an ethnic minority that play a role here. For example, it is well established that ethnic minorities tend to be more socio-economically disadvantaged than the dominant population in most countries. Thus, ethnic minorities with disabilities and their families are often among the most disadvantaged (Fazil, Bywaters, Ali, Wallace, & Singh, 2002). Disadvantage and relative poverty are risks for sexual health . this will be discussed in Chapter 6. Furthermore, ethnic minorities may face barriers to accessing needed health and support services, due to, among other things, culturally alienating services and institutional racism. Again, people with disabilities from ethnic minorities may be more disadvantaged. For example, South Asian families of children with learning disabilities in the UK reportedly have low rates of service utilisation (Heer, Rose, & Larkin, 2012). In the USA, research has suggested low levels of disability-related service support experienced by ethnic minority families (Samuel, Hobden, LeRoy, & Lacey, 2012). In multi-cultural societies, the issue of cultural competence and working with individuals and families from cultural minorities presents an additional structural barrier for people with disabilities (Lindsay, King, Klassen, Esses, & Stachel, 2012). In some cases, such services may have processes and structures that alienate people with disabilities coming from other contexts, presenting additional barriers to access (e.g. Harris, 2003).

Some conditions may disproportionately affect people from certain geographical regions. For example, sickle-cell disorder is a chronic illness mostly diagnosed among people of Western and sub-Saharan Africa, Saudi Arabia, India and Mediterranean countries (WHO, 2006b). The disabling effects of sickle-cell disease may map on to existing racial stereotypes, when sufferers are immigrants from these countries. The disorder may also contribute to difficulties and absences from school for youth with sickle-cell disorder (Dyson, Atkin, Culley, & Dyson, 2007). This has possible implications for accessing sexual health education. One of the possible symptoms for adolescent males with sickle-cell disease that is immediately relevant to sexuality is priapism, a condition where the male may suffer a persistent and painful erection, which may lead to possible impotency (Dyson et al., 2007). Ostrander's (2008) study explored the experiences of African-American men with spinal cord injuries. They spoke of their emasculation in relation to sex. The men reportedly did not feel that their disability impacted on their ethnic identity, although two men are quoted as describing how being disabled may intersect with racist perceptions of them by others: they both referred to their perception that the majority society view African-Americans as "trouble", typically as gang members. One man suggested that others may see his disability as a sign of having been in a gang.

In Chapter 2 we referred to some of the cultural understandings of disability that might prevail. Such contextual beliefs will impact on whether men and women with disabilities are viewed as desirable. The notion that someone is "disabled" may also be culturally shaped. For example, a person with albinism may stand out more as "disabled" in an African country, than they perhaps would in a predominantly Caucasian society. In some cultures, a person with albinism is regarded with considerable fear, as their albinism is seen as a curse and contagious, with the result that many may feel isolated and alone, and even unsafe as the threat of violent abuse is a reality (Braathen & Ingstad, 2006; Ikuomola, 2015). When you are that shunned, there is little prospect of having a relationship and experiencing your sexuality (Ezeilo, 1989). Ikuomola (2015) published one of the very few studies looking at albinism and sexual relationships. The study was conducted in Nigeria and involved focus group interviews with a total of 38 persons with albinism
(17 males and 21 females). In his study, participants, particularly women, spoke of the isolation they sometimes felt when it came to relationships, reporting on how they are "othered", even shunned, in society. They report how they are often treated with fear and suspicion by others, or as being dangerous. For women in particular, the degree of marginalisation and discrimination was greater, with men with albinism having some advantage of power within a patriarchal society. This had a serious impact on their opportunities to have relationships, which were reportedly short-lasting and secretive. For example, one woman spoke about how her non-albino partner would want to keep her hidden from family and friends. Many of the participants spoke about making use of pornography for sexual satisfaction.

Cultural norms and taboos about talking about sex and cultural norms about gender roles and sexuality may be additional barriers to accessing information for youth with disabilities from different cultures, particularly women (Yoshida, Li, & Odette, 1999).

Disability, sexual orientation and sexuality

We have discussed above the prevailing myth of the asexuality of persons with disabilities. Where people with disabilities are recognised as being sexually active, one could say that the assumption is that it is heterosexual. Constructions about sexuality where it is seen to exist for persons with disabilities rest on normative assumptions about sexuality. For example, in a study from Australia regarding young men with learning disabilities (Wilson, Parmenter, Stancliffe, & Shuttleworth, 2011), it was found that while the sexual rights of the young men with learning disabilities were recognised by staff, their perceptions of the young men's sexuality and their sexual rights was conditional on "normative societal expectations" (p. 279) of what is considered appropriate sexuality. This not only carries assumptions about what sex should involve and where it should take place, but with whom, and with which gender. As Scotti and colleagues (1996) found in their study of lay attitudes towards the sexuality of persons with developmental disabilities, toleration of sexual activities was lowest for those that were homosexual in nature. This is a dated study now, but more recent studies (e.g. Swango-Wilson, 2008) indicated more negative attitudes towards same-sex behaviour, and most negative attitudes about anal sex, from carers of persons with intellectual disabilities. Similarly, in the UK, more negative attitudes about homosexuality were found among nursing home staff caring for people with learning disabilities (Grieve, McLaren, Lindsay, & Culling, 2009). In a study in South Africa of teachers providing sex education to young people with learning disabilities (Rohleder & Swartz, 2009), some expressed ambivalence and conflict about touching on the topic of homosexuality. Homosexuality may not be covered in sex education programmes for people with disabilities and studies have shown that knowledge about homosexuality may be low and involve prejudiced attitudes (for example as found by Burns and Davies (2011) among women with learning disabilities).

There is a noticeable paucity of research looking at the intersection of disability and lesbian, gay, bisexual and trans (LGBT) identities. Duke (2011) provides a useful meta-synthesis of the published research (13 studies), most of which comes from the USA and UK. This topic has been an area of relative neglect in the disability studies literature, as well as in sexuality studies. What little research there is on LGBT people with disabilities tends to focus on gay persons with intellectual/learning disabilities, and often focuses on carers" attitudes or knowledge and sexual behaviours. What we can conclude from the literature is that LGBT people with disabilities experience prejudice and discrimination, and are at increased risk for mental health problems such as depression and anxiety, while homosexuality is often a forbidden topic in many sex education programmes (see Duke, 2011).

One of the few qualitative studies of the experiences of gay people with mild learning disabilities comes from the Netherlands (Stoffelen, Kok, Hospers, & Curfs, 2013). In this study, many participants spoke of having mostly brief same-sex relationships, and the prevalence of a high incidence of negative experiences, including abuse and discrimination on the basis of their sexual orientation. The participants in the study particularly valued the support of carers who were themselves gay or lesbian, as it provided them with the opportunities to talk about their sexuality, which was otherwise considered taboo. In the UK, Abbott and Burns (2007) explored the experiences of LGBT young adults (9 women and 11 men) with learning disabilities and found that many experienced negative attitudes from teachers, carers and parents about their sexuality. For example, when they were younger, they reported how when expressions of love between two men or two women were discovered by teachers or parents, they were sometimes prevented from seeing each other. The participants also reported how their families tried to persuade them that they were not gay or lesbian when they had come out. Where relationships had occurred, they were often kept secret. Notably, only one of the men interviewed reported having experienced social discrimination; however, many reported experiencing prejudice and name-calling from their own families. Many also reported more negative responses from services and support staff than positive.

McRuer (2003) states there is an intersecting connection between heterosexuality and able-bodiedness as normative (and thus homosexuality and disability as abnormal), but argues that the two are rarely considered, saying this is "perhaps because able-bodiedness, even more than heterosexuality, masquerades as a nonidentity, as the natural order of things" (p. 79). We discussed McRuer's arguments in relation to crip theory in Chapter 2. This normative intersection of sexuality and disability is explored in a study by Cappotto and Rinaldi (2016) in Italy. They interviewed 15 deaf individuals (6 who identified as lesbian, 6 as gay and 3 as bisexual). The participants referred back to their experiences at school as predominantly heteronormative, and so experienced their deafness as well as their homosexuality as both causing feelings of unease and acts of discrimination during their young lives, creating a double stigma and feelings of not belonging. Many spoke of very poor relationships with their classmates and with teachers. Prejudices were felt from both the deaf community towards their homosexuality, as well as from the hearing community towards their deafness and homosexuality. Similarly, in a study from the USA of the experiences of adolescents with disabilities identifying as sexual minorities (Kahn & Lindstrom, 2015) participants also spoke about facing double discrimination and prejudice, and struggling with a sense of not belonging. While some of their study participants were able to express a degree of self-confidence and pride in their identity, this was with some conflict about also wanting to fit with social norms and notions of "normality".

We know very little about the sexual lives of people with disabilities who identify as gay, lesbian, bisexual or queer. Or indeed people with disabilities who identify as transgender. As Lofgren-Martenson (2009) states, young gay people with disabilities are an "invisible group".

Disability and place

Issues of place and space are also of relevance. Opportunities to have sexual relationships are different for everyone, with or without a disability. But when it comes to disability, sexuality is impacted upon when it comes to issues of private versus public spaces. Much has been written about the medicalisation of disability and the "public" disabled body, which can be frequently examined, operated on, handled and so on (e.g. Butler & Bowlby, 1997; Goodley & Runswick-Cole, 2013; Hughes, 2004). Where people with disabilities require the assistance of carers for their basic needs (including washing and toileting) the unequal power relationship that exists between the carer or professional staff and the (dependent) disabled "patient" may encourage sexual abuse (Siebers, 2012). This will be discussed in more detail in Chapter 5. Moreover, many health care facilities, including sexual and reproductive health care facilities are not built to be accessible to people with disabilities. This sometimes leads to the sexual health of disabled bodies becoming public. For example, a survey of 34 health care facilities in Northern Ireland revealed that just four clinics had minicom systems for use by people with hearing difficulties, and of these, only two clinics offered this equipment in a private space (Anderson & Kitchin, 2000). People with hearing difficulties who use these clinics thus face the loss of dignity and embarrassment invoked by having to discuss their sexual health within a public space. This may have long-term consequences for their health, as evidence shows that embarrassment over sexual health care procedures leads to the avoidance of future treatment (McCambridge & Consedine, 2014). We will revisit this in Chapter 7.

Place also matters in terms of where one lives. People with disabilities who live in institutions typically do not have many private spaces in which they can engage in (consensual) sexual activities, and thus limited opportunities for finding sexual partners and building intimate relationships. Institutionalisation also may limit access to condoms, if these are not provided, resulting in people with disabilities potentially finding quick opportunities for (unprotected) sex in inappropriate, secluded spaces (e.g. Rohleder, 2008).

Aside from issues of privacy, place also intersects with disability to systematically shape how sexuality is (or is not) experienced and expressed among people with disabilities. For instance, people with disabilities living in low-income countries, or rural areas within high-income countries may be disadvantaged when attempting to access sexual and reproductive health care. This is often due to poor infrastructure as in such areas transport links may be poor and otherwise unreliable. In these cases, disability and place also frequently intersect with another barrier, relative poverty. That is, often people with disabilities living in problematic spaces cannot overcome their difficulties because they do not have the means (e.g., to pay for costly private or public transportation). As such, in some areas of the world, people with physical disabilities face long commutes by foot to travel to such centres, which in many instances is not plausible for them to undertake (see, for instance, the article "You must carry your wheelchair" by Vergunst, Swartz, Mji, MacLachlan, & Mannan 2015). Such situations are further complicated within communal cultures, as the assistance of family members is often required for these journeys, meaning other obligations to the family unit these individuals have may go unfulfilled (Braathen et al., 2016).

At the time of writing, there has not been much research conducted on disability and sexuality within resource-poor settings (Carew, Braathen, Swartz, Hunt, & Rohleder, 2017). This means that although approximately 80 per cent of people with disabilities reside in low-income countries (WHO and World Bank, 2011), we paradoxically have very little understanding of the sexual lives of the majority of people with disabilities. We will conclude this section by reminding you that perceptions of people with disabilities as asexual may be global in their scope (Nario-Redmond, 2010). Although many high-income countries have enjoyed progressive disability movements, prejudice still exists and may have migrated into new forms. Mehrotra (2008) notes that, in rural India, traditional folk songs and tales popularise the notion that people with disabilities should be the last choice when it comes to romantic relationships. This same sentiment can be found expressed in stereotypical depictions of people with disabilities within modern-day TV and film in "Western" media (see case study above) and may also be passed orally between individuals in the form of jokes (e.g. "Why are men/women like parking spaces? The good ones are taken, the rest are disabled").

Disability and sexual advocacy

As we have suggested so far, the prevailing, denigrating constructions of disability and sexuality make this a site of oppression for people with disabilities, which excludes them from full participation in healthy sexual relationships. Given the myriad of barriers that people with disabilities experience, they are often described as one of the most marginalised and vulnerable groups within any society. For example, reference is often made to persons with disabilities being "vulnerable" to sexual abuse (see Chapter 5), and indeed we make use of this phrase ourselves. Usage of this term may imply that the "vulnerability" is a factor within the individual who experiences a disability. For instance, we are less likely to state that "non-disabled people sexually abuse young people with disabilities". People with disabilities are not inherently vulnerable, however, and the global inequalities they experience can be remedied through policies and practices designed to produce equitable standards of living with people who do not have disabilities. This includes within the domain of sexuality, though some of these movements are controversial.

There is a lot of advocacy for the sexual rights of people with disabilities and in some countries in particular substantial progress has been made. There are organisations and websites that support people with disabilities in their sexual expression, such as TLC Trust in the UK (www.tlc-trust.org.uk) and Touching Base in Australia (www.touchingbase.org). Both organisations aim to connect people with disabilities with sex workers and also engage in advocacy on behalf of members of these groups, who often share experiences of stigmatisation. Such advocacy can be difficult as the intersection between disability and sex work is a complex and often controversial issue. In general, proponents of sex work for people with disabilities focus on their right to a fulfilling sexual life, and suggest that the industry represents the only opportunity for some with severe impairments to achieve this (e.g., Owens, 2013). But detractors argue that the sexual needs of people with disabilities do not justify the stymieing of women's equality (e.g., Martin, 2014), which is a common perspective within radical feminism on what the sex industry represents as a whole. At the policy level, assisted sex has been fully implemented in some countries, notably the Netherlands, where it has been a routine aspect of state service provision for people with disabilities for more than 35 years (Sanders, 2007). However, in most areas of the world, when assisted sex and disability are discussed, the issue remains the subject of media curiosity (e.g. The Sessions; see case example above), rather than systematic empirical investigation or policy debates.

Research that has explored the perspectives of sex workers and men with disabilities who use their services was conducted by Sanders (2007). She identified that men with disabilities use sex workers not strictly for intercourse, but also for intimacy and friendship. Her interviews with commercial sex workers also suggest that they felt they were providing a service to men who could not engage in conventional intimate relationships. In particular, Sanders (2007) posits that there are spaces in which people with disabilities and sex workers could collaborate, for example to a shared discourse around commercial sex orientated toward achieving sexual rights and autonomy for both groups.

Disability rights movements, such as the one located in the UK, are in the main supportive of assisted sex for people with disabilities. However, there is recognition that "a good fuck", as Shakespeare (2000, p. 160) aptly puts it, does not supersede other issues such as poverty and exclusion. As Chapter 7 will discuss, barriers such as poverty act to deprive people with disabilities of their right to health care, including sexual and reproductive health care. Given that most sexually active people with disabilities engage in non-commercial, private, sexual relationships, the failure to implement assisted sex at the policy level may therefore be less debilitating for the sexual rights of the majority of people with disabilities, compared to failing to eradicate other barriers like poverty. In relation, Sanders (2007) also comments on the danger of the debate and "othering", or assuming that because someone is disabled they must seek out sex commercially.

Notwithstanding the policy outcomes of the assisted sex debate, there is a small minority of people with disabilities who espouse the benefits of using sex workers and whose experiences occasionally manage to populate public consciousness thanks to media interest (e.g., O"Brien, 1990). The relationship between such individuals and their sex workers is unlikely to abate if assisted sex programmes are not enshrined at the policy level, given that sex work constitutes a large hidden economy in areas of the world where it is illegal (e.g. the UK; O"Connor, 2014). But it is worth considering, as Sanders (2007) points out, that there is less advocacy on behalf of women with disabilities who use sex workers, as well as research exploring their experiences of the industry. Within sustained efforts to address this, the sexual rights and autonomy of women with disabilities may be restricted.

Similarly problematic is the movement of "disability fetishism" (Kafer, 2000), where non-disabled men or "devotees" are sexually aroused by women amputees. This is controversial with some believing this to be facilitating the exploitation of women with disabilities, while some of the women in these situations find the experience of being desired empowering (Bonnie, 2014; Solvang, 2007).

Nevertheless, ideas about the sexuality of people with disabilities has a significant role to play in the inclusion, or rather relative exclusion of people with disabilities from matters related to sexual health. Such ideas, and actual or perceived exclusion does lead to people with disabilities being placed in positions that make them "vulnerable" to having their sexual needs unmet and experiencing poor sexual health. The remaining chapters will explore this in relation to sexual health education, sexual abuse and exploitation, sexually transmitted diseases and access to sexual and reproductive health care services.

Concluding comments

By necessity we have had to present brief discussions of the various identities and concepts that intersect with disability. These are all areas that can be much more richly considered through further empirical investigation. We have also not looked at all areas. For example, we have not included a section on age, even though this is clearly another layer to be considered. Age, however, is something that is woven into other areas of this book (e.g. when discussing sexual abuse). Moreover, by focusing on "problems", our aim is not to perpetuate negative constructions of disability and sexuality, but rather to highlight how issues of power and denigration continue to oppress and exclude people with disabilities for living fully sexual lives. Readers are pointed to other texts that explore more affirmative and positive aspects of disability and sexuality (for example McRuer & Mollow, 2012). The important point to make from the discussion in this chapter is that when it comes to disability and sexuality our understanding is riddled with various assumptions and misconceptions. Some of these apply to all people, but may be more pronounced for people with disabilities. Furthermore, as we pointed out in the introductory chapter, this book refers to persons with disabilities in general, but we have wanted to ensure in this chapter that readers bear in mind that persons with disabilities represent a vastly heterogeneous population. Having explored our understanding of disability and the layered identities involved, we can now turn in the remaining chapters to what implications this has for sexual health.

Note 1 With acknowledgements to Mr Mussa Chiwaula from the Southern African Federation of the Disabled, Professor Leslie Swartz and Dr Xanthe Hunt from Stellenbosch University. Data from this project is still being analysed and publications from this project will follow.


CHAPTER 4

SEXUAL HEALTH EDUCATION


One fundamental aspect of promoting sexual and reproductive health is through sex education. It is typically parents and teachers who teach children and young teenagers about sexual maturation, sex, pregnancy and health. For many parents, carers and teachers of children with disabilities, this may feel like a frightening task. This chapter discusses how young people with disabilities may be excluded from sexual health education. This can often times be due to social constructions of people with disabilities as asexual and thus not in need of sex education. Associated with this are the reported anxieties and challenges faced by parents and educators. This chapter will further explore barriers that may exist, using as an illustrative example the challenges to understanding that arise in delivering sex education to people with learning disabilities. But first, we look at access to education generally for people with disabilities, as this is a wide-ranging and fundamental barrier.

Disability and education

In countries across the world, persons with disabilities tend to have lower levels of general education than the rest of the population (Elwan, 1999). The Convention on the Rights of Persons with Disabilities (United Nations, 2006) recognises the right to inclusive and specialist education for all persons with disabilities. However, as the World Report on Disability (WHO & World Bank, 2011) indicates, children with disabilities "are less likely to start school and have lower rates of staying and being promoted in school" (p. 206) and have lower educational outcomes. This has been found to be the case in low-income countries and high-income countries, although the level of educational outcomes for all may be more pronounced in low-income countries. Moreover, women with disabilities are more disadvantaged than men with disabilities in low-income countries. For example, data reported in the World Report on Disability (WHO & World Bank, 2011) of rates of primary school completion are shown in Table 4.1.

The differences in outcomes between males and females in low-income countries are significant. The outcomes also vary for type of disability, with persons with physical disabilities tending to do better than persons with learning and sensory disabilities.

Much of this inequality in access to education seems to be associated with expectations about disability, capability and productivity. For example, in low-income countries where there may be scarce opportunities for employment, parents may choose to exclude their children with disabilities from education, emphasising instead education for their non-disabled children, with the expectation that they will have greater guarantees of getting a job (Groce, 2003). Furthermore, educating a child with disability may require more resources and be more costly than educating a non-disabled child (WHO & World Bank, 2011) and so may be inaccessible to families and not adequately provided by governments in low-income countries. Other reasons may include that children with disabilities may be regarded as incapable of learning, or too disruptive to the learning of other non-disabled children (Groce, 2003, 2004). Furthermore, schools, often built with the needs of non-disabled children in mind, may not be accessible to children with physical or visual impairments. Children with disabilities are then often regarded as a "problem" to education. As Dan Goodley (2014, p. 103) argues:
Disability as the productive side of the dis/ability complex pervasively appears in educational settings as a problem. Cue a host of commonly heard objections to disability. Non-normative and badly disciplined children stalk our classrooms. Disability disorders normative curricula expectations. Some kids just do not have the wherewithal to "get it". Disability opposes expectations of educational achievement.

Low levels of education has an obvious impact on the disabled person's ability to gain employment and earn an adequate income, and in the absence of any social welfare provisions, leads to a cycle of poverty and increased disability (see also Chapter 6 for discussion of poverty and risk for sexually transmitted diseases).
 

TABLE 4.1
Education outcomes for disabled and non-disabled persons
 

 

High-income countries

 

Low-income countries

 

 

Disabled

Not disabled

Disabled

Not disabled

Female

Primary school completion

59.3%

72.0%

32.9%

42.0%

Mean years of education

6.39

7.82

4.17

5.14

Male

Primary school completion

61.7%

72.3%

45.6%

55.6%

Mean years of education

6.60

8.04

5.63

6.43

Source: adapted from WHO and World Bank (2011, p. 207).

 

The differences in outcomes between males and females in low-income countries are significant. The outcomes also vary for type of disability, with persons with physical disabilities tending to do better than persons with learning and sensory disabilities.

Much of this inequality in access to education seems to be associated with expectations about disability, capability and productivity. For example, in low-income countries where there may be scarce opportunities for employment, parents may choose to exclude their children with disabilities from education, emphasising instead education for their non-disabled children, with the expectation that they will have greater guarantees of getting a job (Groce, 2003). Furthermore, educating a child with disability may require more resources and be more costly than educating a non-disabled child (WHO & World Bank, 2011) and so may be inaccessible to families and not adequately provided by governments in low-income countries. Other reasons may include that children with disabilities may be regarded as incapable of learning, or too disruptive to the learning of other non-disabled children (Groce, 2003, 2004). Furthermore, schools, often built with the needs of non-disabled children in mind, may not be accessible to children with physical or visual impairments. Children with disabilities are then often regarded as a ‘problem’ to education. As Dan Goodley (2014, p. 103) argues: 

Disability as the productive side of the dis/ability complex pervasively appears in educational settings as a problem. Cue a host of commonly heard objections to disability. Non-normative and badly disciplined children stalk our classrooms. Disability disorders normative curricula expectations. Some kids just do not have the wherewithal to ‘get it’. Disability opposes expectations of educational achievement.

Low levels of education has an obvious impact on the disabled person’s ability to gain employment and earn an adequate income, and in the absence of any social welfare provisions, leads to a cycle of poverty and increased disability (see also Chapter 6 for discussion of poverty and risk for sexually transmitted diseases).

In neoliberal societies where emphasis is placed on an individual's responsibility for their own welfare, well-being and health, people with disabilities are increasingly excluded in this "structural violence", as states provide less (Farmer, 2004).

Barriers to sexual health education

Sex education may have a range of different aims. In terms of health, some key aims are to teach people about sexually transmitted diseases, what sexual practices are safe, and about contraception and reproduction. But it also has the important aims of providing people with an understanding of their own bodies, empowering them to be able to make their own informed choices (not fully exercisable in situations of oppression and violence . see Chapter 5), to recognise sexual exploitation and abuse and to learn what are the social conventions around sexuality (Department for Education and Employment (UK), 2000; Finlay, Rohleder, Taylor, & Culfear, 2015).

Persons with disabilities have less access to equal levels of education and that also results in less access to sexual health education, as much of this is typically delivered as part of a school curriculum. In special education curricula, some research suggests that the topic of sexuality is inadequately discussed (Nguyen, Liamputtong, & Monfries, 2016). Even where persons with disabilities may have attended school, they may still be excluded from sexual health education (Heyman & Huckle, 1995; McCabe, 1999). Access to sexual health education may also depend on the severity of disabilities, for example people with more severe learning disabilities are particularly excluded from education (Borawska-Charko, Rohleder, & Finlay, 2017). Sexual health education is also gained from information received at sexual and reproductive health care facilities, and the research clearly indicates that people with disabilities have limited access (see Chapter 7). When it comes to receiving sex education, much of the barrier is due to non-disabled people's perceptions and constructions of disability and sexuality.



Social barriers

Research has regularly shown that young people with disabilities are generally excluded from equal levels of sexual health education, because of assumptions and constructions about disability and sexuality. As we have already mentioned in Chapter 3, one myth about disability is that of asexuality (Milligan and Neufeldt, 2001). People with disabilities, in particular intellectual or physical disabilities, may be assumed to be asexual and thus not in need of sex education. For example, in a study in South Africa looking at the experiences of young people with disabilities of sexual communication with their parents and caregivers, Chappell (2016) found that constructions of young people with disabilities as "innocent" or "sexually passive" were dominant. Milligan and Neufeldt (2001) go on to observe that even where there is increased knowledge and awareness about the sexuality of people with disabilities, there may still remain a reluctance among those caring for or teaching young people with disabilities to engage with sexual issues.

The topic of sex and sexuality seems to raise particular anxieties when it comes to people with intellectual disabilities. A number of assumptions and myths may often arise here. Early work in this area by Craft (1987) highlights two distinct and contradictory constructions about the sexuality of people with intellectual disabilities. One of these is that people with disabilities are seen to be innocent "forever children" who are thus asexual. An opposed view is to see the sexuality of people with intellectual disabilities as problematic, even predatory, as they are "seen as having very strong sexual inclinations, coupled with poor personal control, making them a menace to society at large" (Craft, 1987, p. 14). From this view, sex education is regarded with considerable anxiety by parents and others as potentially dangerous, in that it may encourage sexual "acting out". These myths of asexuality or dangerousness overlap into various interrelated misconceptions and attitudes. Job (2004) cites Melanie Griffiths" very helpful outline of seven "mythconceptions" in relation to the sexuality of people with developmental disabilities, which Job (2004) in turn maps on to individuals who are deaf or hard of hearing. These are:

  • 1. Persons with disabilities are "forever" children and are asexual.

  • 2. The sexuality of persons with disabilities needs to be restricted and inhibited in order to protect themselves and others.

  • 3. People with disabilities should not be provided with sex education, as doing so will encourage inappropriate sexual behaviour.

  • 4. People with disabilities should be sterilised, to prevent them giving birth to children who will also be disabled.

  • 5. People with disabilities are more likely to develop different, inappropriate or deviant sexual behaviour.

  • 6. People with disabilities are oversexed and sexually indiscriminate, and are dangerous to others, including children.

  • 7. People with disabilities cannot benefit from sexual counselling or treatment.
    (Job, 2004, pp. 267.268)


These "mythconceptions" are highlighted in some of the research literature. For example, Heyman and Huckle (1995) found that informal carers of people with intellectual disabilities viewed sex education as problematic because they felt the people they cared for were unable to understand the various physical and emotional issues involved with sexuality. They saw this as potentially leading to uninhibited and inappropriate sexual behaviour, and possible vulnerability to unplanned pregnancy and sexual exploitation. Carers then attempted to control sexuality by placing restrictions on opportunities for sexual expression (for example limiting the opportunity for men and women with learning disabilities to be alone together). A study on parents" and carers" perspectives on intimate relationships for people with learning disabilities in Ireland (Evans, McGuire, Healy, & Carley, 2009) found that more restrictions seemed to be exercised around intimate relationships, with parents reporting that decisions about such relationships should predominantly be made by them, not their (adult) child. For young people with learning disabilities in particular, they may grow up with the sense that sex and intimate relationships are not meant for them (Kelly, Crowley, & Hamilton, 2009) and develop negative views about sexuality and sex (Bernert & Ogletree, 2013).

A discourse of restriction was observed by Rohleder and Swartz (2009) in interviews with teachers providing sex education to young people with intellectual disabilities in South Africa. In their analysis of interview data, they found that even though the teachers acknowledged the importance of sex education provision, there were still some attempts to restrict the sexuality of the young people they taught. The teachers spoke about having concerns about encouraging sexual activity, which became moral concerns about "inappropriate" sexual relations (such as pre-marital sex or homosexuality). Emphasis seemed to be placed on providing sex education so as to discourage sex, because it would lead to pregnancy, sexually transmitted diseases and sexual exploitation. These are, of course, valid concerns but there seemed to be a relative absence of a "discourse of pleasure" (Tepper, 2000). Furthermore, where sex education was provided in residential care, attempts to restrict sexuality was embodied in the non-provision of condoms or the lack of appropriate private spaces in which adults with intellectual disabilities who were in relationships could have sex (Rohleder, 2010a). As Heyman and Huckle (1995) argue, the displays of "inappropriate sexual behaviours" (such as public sexual acts) that carers fear would be encouraged with the provision of sex education, may in part be a result of the various restrictions placed by carers. With no private spaces, people may have little choice but to use public spaces in order to masturbate or enjoy their sexual relationships. In a qualitative study by Hollomotz and the Speakup Committee (2009), people with learning disabilities in residential settings in the UK spoke of the pervasive lack of private space they had, and how they had to make use of locations "behind the wall" or "behind the shed" (p. 93). The authors note that some of the residential concerns about privacy may have to do with safeguarding, but they concluded that the barring of privacy does not prevent people from having sex, who instead may do so in places where sex has to be rushed and may be unsafe.

An added barrier is that sex education may often be delivered from a normative heterosexual and non-disabled perspective, where the emphasis is on socio-cultural expectations of what is considered "normal" and appropriate sexuality and reproduction. Alternative experiences of mutuality, pleasure and the erotic life and reproduction, may not be considered. Wilson and colleagues (2011), in a study about young men with learning disabilities, conclude that the perceptions of staff working with these young men about their sexuality and sexual rights was conditional on "normative societal expectations" (p. 279) of what they considered to be appropriate sexuality and intimate relationships. Seidel and colleagues (2014), in a systematic review of sexual knowledge among adolescents with physical disabilities, reported that while adolescents may generally receive sexual education in schools, very little of this information was impairment-specific. They highlighted the need to include more specialised, disability-specific, material.

Teacher training and educational resources

Many teachers and carers may feel inadequately trained, lack confidence and feel uncertain about their skills and ability to deliver sexual education to persons with disabilities (Christian, Stinson, & Dotson, 2001; Evans et al., 2009; Howard-Barr, Rienzo, Pigg, & James, 2005; Pownall, Jahoda, & Hastings, 2012). For example, in a study looking at teachers" experiences of delivering sex education to young people with learning disabilities, visual disabilities and physical disabilities in South Africa (Rohleder, Swartz, Schneider, & Eide, 2012), teachers reported on various challenges they faced in delivering sex education, including challenges in teaching explicit and sometimes abstract material that could be understood, and feeling uncomfortable and lacking in confidence. In some cases, sex education or certain topics may be avoided (McCabe 1999; May & Kundert, 1996). Similar findings are from Chirawu and colleagues (2014) who surveyed educators in schools across South Africa. They found that while educators on the whole viewed delivering sexuality education to persons with disabilities positively, they generally reported feeling most competent doing so with "soft" topics (e.g. hygiene), rather than more explicit topics (e.g. masturbation) that made them more uncomfortable. This may not be particular to persons with disabilities. These are topics that may frequently cause embarrassment and are not easy to talk about for many people. However, for these educators surveyed, they felt that they had not received adequate materials with which to deliver the appropriate information and that they could be better supported by the parents of children with disabilities. As research by East and Orchard (2014) has found, feeling inadequately trained may result in parents, professionals and teachers placing the responsibility for the delivery of sex education on someone else regarded as more appropriately qualified, with the result that the child with disabilities (in this study, adolescents with physical disabilities) do not receive a comprehensive sexual education involving all environments (school, home and health care).

In the UK context, a study by Lafferty and colleagues (2012) looked at the challenges to providing sexual health education to young people with learning disabilities in Northern Ireland. They found that while parents, professionals and carers felt there was a need for such education, they also felt there was a lack of consistent provision. They identified four key barriers: concerns about vulnerability and safeguarding, cultural prohibitions, inadequate training and insufficient appropriate educational materials and resources.

Not only teachers, but also counsellors and psychotherapists have reported greater anxiety discussing issues of sexuality with clients who have disabilities than with clients who are not disabled (Parritt & O"Callaghan, 2000). This will be discussed further in Chapter 7 in relation to access to sexual and reproductive health care. A recent review of sex education research for persons with significant disabilities (Travers, Tincani, Whitby, & Boutot, 2014) found that only one study included people with disabilities below the age of 18 (despite the importance of sex education for teenagers), and noted a lack of research on curricula and evaluation of educational programs.

In addition to barriers due to teachers" skills, experiences and confidence, persons with disabilities may experience material or environmental barriers to accessing sexual health education (and education generally). For people who have visual impairments or are blind, sex education materials may not be available in Braille, and there may be some societal restrictions on tactile learning (Hicks, 1980), for example learning about body parts or teaching how to put on a condom. Teaching about "unacceptable touch" can also be a challenge for persons with visual disabilities who may require touch as a frequent means of communication. In a study of the experiences of young people with visual impairments (Krupa & Esmail, 2010), the absence of tactile models of body parts, for example, was experienced as a barrier to learning. In teaching adolescents with learning disabilities, it may be difficult to develop appropriate standardised teaching materials, as some teaching resources may be too "advanced" for learners with lower levels of functioning, while others developed at an accessible level may be felt to be too basic for teenagers with higher levels of functioning (Rohleder et al., 2012).

An often mentioned challenge faced by teachers is that they feel it is difficult conveying complex information about sex in a manner that can be understood by people with disabilities, particularly learning disabilities (e.g. Chirawu et al., 2014; Rohleder et al., 2012; McCabe 1999; May & Kundert, 1996). Communication is often reported as a major issue in delivering support and health care for people with learning disabilities, with studies showing that professionals and carers often communicate in a way that may be too complex and abstract (Antaki & Finlay, 2012; Bradshaw, 2001; McConkey, Morris, & Purcell, 1999; Ziviani, Lennox, Allison, Lyons, & Mar, 2004). A cognitive psychological approach to thinking about the problem of "understanding" would often consider comprehension as related to internal processes, such as working memory and language processing. The "barrier" here is seen as being due to the individual's capacity. Some of the barriers to understanding may be an interactional one. We explore this in the following case example.



Case example: barriers of "understanding" and sex education for people with learning disabilities in the UK

A study by Finlay et al. (2015) took a social interactional approach to the issues of "understanding" in sex education for people with learning disabilities. They conducted a conversational analysis of actual sex education sessions to examine what happens in practice when it comes to providing sex education and how messages are understood.

Below is an amended extract from one such sex education session. In this part of the session the topic dealt with was relationships. Teaching is facilitated through a game: on a table are three placemats . one depicts "much love"; one depicts "no love"; and the third depicts "unsure". The four learners (pseudonyms are used) are handed out different statements about relationships, which are read out by the teacher. The learners then need to decide whether what is depicted in the statement is an example of "much love" or "no love" or whether they are unsure. There is a helper to assist the teacher.

Extract

1 Teacher Respecting the decisions if either of you wants to end the relationship
4 Marcus ((Moves card towards 'no love" but stops short)).
5 Mohammed ((puts card on "much love")).
7 Marcus ((holds card above "no love')) What
8 Helper Do you understand the question=
9 Teacher =Do you understand that yeah ^
10 Mohammed mmhm ((nods))
11 Anton No [I didn"t catch that.
12 Marcus [((puts card on "much love" then picks up again))
13 Teacher [Ok
15 Teacher Respecting the decision if either of you want to end the relationship
16 Marcus [((drops card onto "no love")).
17 Mohammed [Ohhh ((points at Marcus" hands)) Eh eh eh
18 Anton ((Places card onto "much love'))
19 Mohammed ((points at "much love")) eh
21 Mohammed Marcus
22 Marcus ((Takes card off  "no love' and places on "much love"))

In the above extract Mohammed places his card on to "much love' (the expected correct answer). Marcus is unsure, and Anton is still thinking about it. Marcus then goes on to put his card on "no love". Mohammed then actively corrects Marcus, showing him which is the correct answer, and Marcus changes his response. The game then moves on with all learners having answered correctly. However, we cannot be sure if Marcus, or even Anton for that matter has really understood the problem posed to them. Has he just followed Mohammed"s correction? And has Anton merely copied Mohammed? And what aspect of the statement is Marcus responding to? The statement includes both a positive ("respecting the relationship") and a negative ('ending the relationship") aspect. He could be responding "no love" to the negative aspect. The point is we do not know. The teacher manages this interaction by checking understanding by asking, "Do you understand?" and repeating the question, until the expected correct answer is given. But at no point is there any evidence of what exactly has been understood. The use of a game adds complexity, where the rules of the game have to be understood and remembered, in addition to engaging with and "understanding" the messages.

Finlay and colleagues (2015) also provided data from interviews with the teachers themselves, who report on the struggles they have in checking understanding. The teachers acknowledged that there were problems in understanding, especially when some information given in one (weekly) session is forgotten in the next session. This is a particular challenge when many of the concepts relevant to sex education are abstract (for example concepts such as trust, privacy and consent). Thus, information has to be repeated and delivered in various ways with the hope that "some people will get bits" of it (p. 335).

We use this example here to illustrate not only the challenges that teachers may experience (the teacher here has worked hard at trying to create an activity that she hoped would engage the learners and would facilitate important lessons), but how barriers may not always be clearly identifiable in the moment (we have the advantage of being the outside observer to a sequence of interaction here). In a review of sex education programmes for people with learning disabilities, Grieve and colleagues (2007) suggested problems in the use of role play and activities in delivering information particularly for people with moderate and severe learning disabilities. They argued that these formats were too complex and required abstract thinking.

The barriers outlined above result in low levels of provision of sexual health education for people with disabilities, which for many, may result in inadequate levels of sexual health knowledge.

Sexual health knowledge

Many studies have reported that persons with disabilities may have low levels of knowledge about sex and sexual and reproductive health, and this includes people with physical disabilities (e.g. McCabe, Cummins, & Deeks, 2000; Nguyen et al., 2016; Olaleye, Anoemuah, Ladipo, Delano, & Idowu, 2007), hearing disabilities (Peinkofer, 1994), and learning disabilities (McCabe, 1999). We shall discuss knowledge about sexually transmitted diseases and HIV in Chapter 6. But here we point out that research has shown lower levels of knowledge in other matters of sexual health. In a recent review of the literature on sexual health knowledge among people with learning disabilities (Borawska-Charko et al., 2017), it was concluded that these people had variable levels of sexual health knowledge, and lower levels of knowledge when compared with non-disabled peers. For example, research has found inconsistent findings on knowledge about masturbation and menstruation for persons with learning disabilities, with some reporting a fairly good level of knowledge (e.g. Leutar & Mihokovic, 2007), and others reporting low levels of knowledge (e.g. Healy, McGuire, Evans, & Carley, 2009; Isler, Tas, Beytut, & Conk, 2009). The review also found that knowledge about legal aspects was low (Borawska-Charko et al., 2017).

A lack of knowledge about sexuality can also result in many misconceptions around sex, which may shape young people's constructions of sex and their own sexuality. For example, in a study by Heyman and Huckle (1995) with adults with learning disabilities, sexual acts were referred to as "rude" and sex education was regarded as "rude" and "bad". They further found that the adults with learning disabilities feared that their carers would disapprove of them having any sexual relationships. Similarly, Shakespeare and colleagues (1996) reported on how many young people with disabilities in the UK grew up with a sense that sex was "not meant for them". In a study of the sexuality experiences of people with learning disabilities in Ireland (Healy et al., 2009), participants reported on their reluctance to talk to parents or professionals about intimate relationships, as they felt that there was a disapproval about relationships and they feared that if their relationships became known, they would be prohibited. As a result, participants felt that their right to feel happiness in their relationship was not possible. The results of Healy et al.'s (2009) study are interesting; they found that their participants seemed to have a fairly good understanding of their sexual rights, and how these were restricted, but their sexual knowledge was in some cases quite rudimentary and they held some conservative views about sexuality (with pre-marital sex and homosexuality being viewed negatively).

In a study from the USA by Bernert and Ogletree (2013), the researchers explored perceptions of sex among a sample of 14 adult women with intellectual disabilities (learning disabilities). Their findings indicated that all of the women mostly had negative perceptions about sex, 12 reported having had sexual experiences (all heterosexual) and 4 reporting previous sexual abuse experiences. All of the women understood "sex" to mean penetration, and some understood sex to be primarily about procreation. What is interesting is that only two of the women had any association with sex as pleasurable, with most women having negative associations to sex, primarily involving fear. Some of this was fear about their partner's reaction if they said no to sex, regardless of the quality of relationship with their partners. For many it was the fear about the consequences of sex . that it would hurt, that it would not feel good, that it would result in pregnancy or disease or as one woman put it "get in to trouble" (p. 245).

The lack of sexual health education may also lead to lack of knowledge and understanding about what constitutes sexual abuse, how to describe it and when to report it. This has been shown in research looking at the knowledge and understanding of abuse and rape among people with learning disabilities. It may often be the case that where sex education is provided, it may involve rather simplistic discussions about "good touch" and "bad touch", with less explicit education about forms of abuse and rape. For example, an Australian study by McCabe and colleagues (1994) compared the knowledge and experience of sexual abuse among persons with mild learning disability and students without learning disabilities. They found that the participants with learning disabilities had less knowledge and understanding of the meaning of "rape" and "incest". They were also less sure about what to do and how to say "no" to unwanted touch. What is interesting is that once the persons with learning disabilities were educated further about the meaning of the term "rape", the authors found that persons with a learning disability were more likely to have been raped (27 per cent) than those without learning disability (8 per cent). This study is now quite old, but given what research suggests about low levels of sexual health knowledge, such poor understanding might still be the case for many.

Concluding comments

We have focused our discussion in this chapter on access to sex education, particularly within schools, and mostly with reference to learning disabilities. We have also looked at some of the challenges involved for educators. We have looked at formal education here. The key issue underlying this, though, is that globally, people with disabilities generally receive lower levels of education than the general population, and so will inevitably miss out on the sort of sexual health education that the majority of other people get. We will look at some of these issues again when discussing risk factors for sexually transmitted diseases (Chapter 6). In addition to school, sexual health education is also gained through publicly available sexual health information, through the public health care system, yet this information may also be inaccessible to persons with disabilities as they face barriers to obtaining such services. This is explored in Chapter 7.


CHAPTER 5

SEXUAL ABUSE AND EXPLOITATION


In this chapter we give an overview of sexual abuse, and in what way these issues affect people with disabilities disproportionately compared to the general population. We will give an overview of empirical evidence on the prevalence of sexual abuse as it affects people with disabilities, as well as the consequences of abuse for the victim. Finally, we will explore possible explanations for abuse, and ways in which people with disabilities may be positioned as targets of sexual abuse and exploitation.

In the first few chapters of this book we discussed how people with disabilities are often described as vulnerable. One such area where they are often viewed as vulnerable is in terms of abuse suffered at the hands of others. There are many forms of abuse, but because our focus is on sexual health in this book, we consider sexual abuse in particular. There is no unified definition, understanding or even experience of sexual abuse. There are individual, cultural and contextual variations (Freeborn & Curry, 2009). We often think of abuse as acts of physical force or violence, but abuse can be more than that. Broadly, abuse is referred to as various forms of mistreatment, including physical abuse, sexual abuse, psychological threats and harm, intervention violating integrity, financial abuse, neglect, coercion, abandonment and deprivation (Hassouneh-Phillips, 2005). Sexual abuse is one form of abuse, often seen as synonymous with forced sexual intercourse or rape. However, sexual abuse can be any act of coercive or exploitative sex, regardless of intent and circumstance (Jewkes, Martin, & Penn-Kekana, 2002). Sexual abuse can thus include acts of forced penetration, touching or kissing, exhibitionism, coercion, exploitation, verbal harassment and unwanted exposure to sexual acts or cybersex (Mueller-Johnson, Eisner, & Obsuth, 2014).

Readers would have come across many stories in the media relating to incidences of abuse towards an individual or persons with disabilities, so this awful reality is not an unfamiliar one. People with disabilities may also be sexual offenders themselves.

There is much written about sexual offending among people with learning disabilities. Reasons suggested for why some people with learning disabilities may offend, is lack of adequate sex education (see review by Borawska-Charko, Rohleder, & Finlay, 2017), and little knowledge about legal aspects of sex (such as age of consent). Understanding of the law and sex is not only important for victim's reporting of crimes, but also to prevent sexual offending (O"Callaghan and Murphy, 2007). However, our focus in this book is on sexual health from a health rights approach, so we will not be focusing on people with disabilities as sexual offenders here. We shall focus instead on the abuse suffered by persons with disabilities themselves.

Prevalence of sexual abuse of people with disabilities

So, are people with disabilities more exposed to sexual abuse and exploitation than people without disabilities? If we look at the literature, there is overwhelming evidence to suggest that this is in fact the case. Studies have highlighted a number of risk factors for sexual abuse, and these include being female, disabled, unemployed, single and of a younger age (Nosek, Howland, Rintala, Young, & Chanpong, 2001; Smith, 2008).

The nature and experience of disability has been shown to correspond to a greater likelihood of experiencing all forms of abuse, as well as greater severity of abusive acts. International research, mainly from Europe and North America, has shown that people with disabilities are substantially more likely to be subjected to discrimination, physical violence, neglect, dating violence and sexual abuse compared to people without disabilities (Curry, Hassouneh-Phillips, & Johnston-Silverberg, 2001; Hague, Thiara, & Mullender, 2011; Hassouneh-Phillips, 2005; Haydon, McRee, & Halpern, 2011; Jemta, Fugl-Meyer, & Oberg, 2008; Kvam, 2004, 2005; Milberger et al., 2003; Mitra, Mouradian, & Diamond, 2011; Mitra, Mouradian, & McKenna, 2013; Mueller-Johnson et al., 2014; Sullivan & Knutson, 2000). Adding to this, the likelihood of being a victim of abuse seems to increase along with the severity of the impairment of the victim (Casteel, Martin, Smith, Gurka, & Kupper, 2008). A few studies suggest that individuals with learning disabilities are even more at risk of being abused than people with other disabilities (Horner-Johnson & Drum, 2006). Women and girls with disabilities are subject to multiple discrimination; they are often at greater risk, both within and outside the home, of violence, injury or abuse, neglect or negligent treatment, maltreatment and exploitation (Braathen, Rohleder, & Azalde, 2017; United Nations, 2006). Indeed, studies have found that across the world women are more exposed to abuse and exploitation than men, and women with disabilities are at greater risk than women without disabilities (Cramer, Gilson, & Depoy, 2004; Curry et al., 2001; Foster & Sandel, 2010; Hague et al., 2011; Hassouneh-Phillips & Curry, 2002; Jemta et al., 2008; Martin et al., 2006; WHO, 2013).

It must be noted that there are also some studies that have found slightly opposing results to the studies mentioned above. For instance, a survey among Swiss students found that the increase in risk for sexual abuse among physically disabled youth is larger for boys than for girls. In these quantitative studies, when other variables, such as, for instance, child maltreatment and harsh parenting, are taken into account, physical disability is not a significant predictor for sexual violence in girls, but it remains a significant risk factor for boys (Mueller-Johnson et al., 2014). Similarly, a study from South Africa did not find that adolescents with disabilities were at increased risk for sexual abuse compared to their abled-bodied peers (Maart & Jelsma, 2010). This was also found in a comparative study of youth with and without hearing loss in USA, but the study did find that youth with hearing loss were significantly more likely to be victims of physical abuse and weapon attacks (Titus, 2010).

The methodology used in the various studies referred to above differ greatly and thus comparability and definite conclusions should be drawn with caution. Adding to this the definitions for abuse and for disability are different across studies, and the nature of impairment and type of abuse studied differs. However, what the majority of studies do show is that, statistically, people with disabilities experience higher levels of abuse than the general population.

Some studies have found that sexual abuse is the most commonly experienced form of abuse by women with disabilities (Martin et al., 2006). Multiple studies from the USA have found that women with disabilities are between two to four times more likely to experience sexual abuse compared to women without disabilities (Casteel et al., 2008; Coker, Smith, & Fadden, 2005; Martin et al., 2006; Smith, 2008). Similarly, a survey among schoolchildren in Uganda (Devries et al., 2014) found that girls with disabilities were particularly at risk for sexual violence. The study found significantly higher rates of sexual violence experienced by girls with disabilities compared to girls without disabilities. There was no significant difference between boys with and without disabilities, but rates were higher for girls in general than for boys.

While studies consistently show that women with disabilities have the highest prevalence of experienced abuse, men with disabilities also seem to have substantially higher prevalence compared to men without disabilities (Mitra et al., 2011). The nature of the abuse, however, has been found to be different for women and men with disabilities. For instance, one study found that women with disabilities were substantially more likely to experience forced sex, while men with disabilities were more likely to have experienced coerced sex (Haydon, McRee, & Halpern, 2011). The nature of abuse also seems to differ between women with and women without disabilities. For instance, a Canadian survey study found that women with disabilities had 40 per cent greater odds of experiencing partner violence compared to women without disabilities, and to experience more severe levels of violence. Characteristics of the perpetrators of violence were patriarchal domination and sexually proprietary behaviours. These characteristics were more prevalent in perpetrators of violence against women with disabilities compared to perpetrators of violence against women without disabilities (Brownridge, 2006).

That people with disabilities, particularly girls and women with disabilities, experience greater levels of sexual abuse is well established in the general international literature. What are the reasons for this? As earlier chapters may suggest, much of this has to do with how people with disabilities are constructed and positioned as "vulnerable'.

Trying to understand the increased prevalence of sexual abuse

Let's remember that although we refer here to people with disabilities generally, people with disabilities make up a diverse group, and not everyone with a disability experience the same set of risk factors, or lives and experiences these issues in the same way (Freeborn & Curry, 2009). Abuse of people with disabilities is a complex issue, influenced by a number of intersecting components such as social context, the nature of the disability and individual characteristics (Hassouneh-Phillips, 2005). The language used in the literature and in the media often makes it seem like the problem of abuse is located in the person with a disability, but of course the problem is from the abuser who perceives the person with disability in a particular way, and the social and environmental structures that position people with disabilities at risk. Andrews and Veronen (1993), cite eight possible intersecting reasons for the increased prevalence of abuse of persons with disabilities. These are as follows:

1. A denial of the person's human rights, which may result in powerlessness.

2. Persons with disabilities may have an increased dependency on others for personal care, who may violate personal boundaries.

3. Persons with disabilities have less education about what is considered appropriate and inappropriate sexual activity, and thus may not know how to report this.

4. Persons with disabilities are more socially isolated and at greater risk of manipulation by others who see them as "easy targets".

5. Persons with disabilities may be physically vulnerable and helpless in public spaces, and thus unable to defend themselves against attackers.

6. Increased inclusivity and integration of persons with disabilities in public spaces, without careful consideration of an individual's capacity for self-defence.

7. Some survivors of abuse are not believed.

8. Perpetrators feel they are less likely to be discovered.


Much of the research on disability and sexual abuse uses quantitative methods to try and establish "vulnerability factors" that explain the increased prevalence of sexual abuse. Such factors include lack of accessibility, lack of mobility and restricted communication, all of which may lead to dependency or isolation (Plummer & Findley, 2012). Dependency increases the risk for exposure to and severity of sexual abuse (Plummer & Findley, 2012). The nature of many disabilities increases dependency and creates an imbalance in the power structure between the victim and the perpetrator. The victim is often dependent on the perpetrator either because the perpetrator is a partner, family member, friend, carer or service provider.

This imbalance increases the likelihood of abuse or mistreatment (Nosek, Hughes, Taylor, & Taylor, 2006; Plummer & Findley, 2012; Saxton et al., 2001). Studies from across the world have found that perpetrators of sexual assault against women with disabilities are usually caregivers or family members (Dawn, 2014; Hassouneh-Phillips & Curry, 2002; Plummer & Findley, 2012). Women who are dependent on personal assistance to tend to their bodily needs have been found to be particularly exposed to sexual abuse through infantilism or boundary confusion, both internalised by the women themselves as well as by their carers. The ongoing contact and intimate nature of care between service provider/carer and receiver can create confusion as to the nature of the relationship and the boundaries for the care, and it can also create situations where the care receiver can easily be taken advantage of or abused by the carer (Plummer & Findley, 2012).

In the UK, people with disabilities, especially women, living in institutions have been found to be particularly at risk for sexual abuse. In an institutional context, exposure to abuse was correlated with the victim's level of poverty, whereas this correlation was not as strong for victims outside institutions (Balderston, 2015). This is explained by poorer victims in institutions having less options and choice, being dependent on the perpetrators of abuse and thus having less opportunity to get away from them. Similar patterns have been found in studies from the USA (Plummer & Findley, 2012).

Abuse may also occur at schools. A study from the USA found that children with intellectual disabilities, who are more likely to be taught in isolated school settings, were more exposed to sexual abuse and exploitation than other students with disabilities. Most of the reported abuse had taken place in classrooms or in common school areas. In more than half of the abuse cases the perpetrator had been a school adult, in the rest other students were the perpetrators (Caldas & Bensy, 2014).

Another study from the USA (Nannini, 2006) found that patterns of sexual assault differ between women with and without disabilities and also between women with different types of disabilities. Girls and women both with and without disabilities below the age of 30 were found to be more exposed to rape, but rape victims older than 30 years were three times more likely to have a disability. Disability, linked to oppression and dependence on care, reduced the likelihood for reporting sexual offences, particularly milder sexual offences, and increased the likelihood of tolerating less severe forms of abuse. In most cases of sexual abuse, the perpetrator was someone known to the victim; family members or friends, and as such, home was the most frequent setting for assault. This was the same for women with and without disabilities. Women with disabilities, however, were more likely to be assaulted by a caregiver or service provider, which is not surprising given that they are more likely to be dependent on various service providers.

The rape of women with disabilities may also be fuelled by cultural myths. A myth of "virgin cleansing" has been found in several parts of the world. In essence, the myth says that a person suffering from a sexually transmitted disease can be cured from the disease by having sex with a virgin. We will discuss this more in
Chapter 6 in relation to HIV and sexually transmitted diseases. However, important to note here is that the myth is said to disproportionately affect people with disabilities, who are often thought of as asexual, and thus as virgins (Groce & Trasi, 2004; Mall & Swartz, 2012; Murray & Burnham, 2009b). However, the relevance and prevalence of such a myth, and its potential consequences is highly contested (Epstein & Jewkes, 2009; Jewkes et al., 2002; Murray & Burnham, 2009a). Academics have expressed concern that notions of such a myth diverts attention from the real and highly prevalent problems that lie behind sexual abuse. They do not deny that such beliefs exist and that rape cases have been reported where the myth had been the motivating factor for the rape. They argue that this reported cause for rape is far more infrequent than other prevalent causes for rape, such as poverty and entrenched gender-based power inequalities (Epstein & Jewkes, 2009; Jewkes et al., 2002).

In most cultures women have a lower position in social and economic terms than men, and people with disabilities have a lower position than people without disabilities. This contributes to the disempowerment of people with disabilities in general, and women with disabilities more specifically. Nosek, Howland and Hughes (2001) suggest that common views and expectations of women with disabilities positions them at increased risk for sexual exploitation and coercion, through psychological pressure for sex and intimacy. In addition to this, or perhaps because of this, many women with disabilities are viewed and view themselves more negatively than women without disabilities and more negatively than men with or without disabilities (Copel, 2006; Hassouneh-Phillips, 2005; Plummer & Findley, 2012; Reinkainen, 2004; Tilley, 1998). In general, women with disabilities have been found to have lower self-esteem, sexual esteem and body image (see also Chapter 3). Furthermore, dependency, fear of being alone and not finding a partner who will accept their disability puts women with disabilities at particular risk for sexual abuse, for not reporting abuse and for staying in an abusive relationship (Copel, 2006; Glover-Graf & Reed, 2006; Hassouneh-Phillips & McNeff, 2005; Plummer & Findley, 2012). Indeed, negative attitudes toward disability at the individual and societal levels have been found to put individuals with disabilities at increased risk for sexual abuse and exploitation (Balderston, 2015; Glover-Graf & Reed, 2006; Hassouneh-Phillips & McNeff, 2005).

For instance, a study from the USA (Hassouneh-Phillips, 2005; Hassouneh-Phillips & McNeff, 2005) found that many women with disabilities perceived themselves as unattractive and sexually inadequate. They experienced their disabilities as limiting their options and possibilities for forming and sustaining romantic relationships. This, combined with a deep desire to be in a romantic relationship, influenced their decision-making by lowering their standards, and thus increasing their risk for entering into an abusive relationship, and staying in an abusive relationship. Risk factors for abuse of women with disabilities were found to be poor parental relationships, exposure to abuse during childhood, previous partner abuse, alcohol and drug use. The authors argue that these factors influence women's self-esteem, which in turn impacts on their decision-making and compromises their ability to protect themselves from abuse (Hassouneh-Phillips, 2005). Similar patterns were found in a qualitative study from Malawi (Braathen & Kvam, 2008; Kvam & Braathen, 2008), in which women with disabilities spoke of their experience of exploitative relationships. We discuss this in more detail in the case example below.

That people with disabilities are exposed to sexual abuse is clearly established. The research we have outlined briefly above attempts to explain the prevalence in terms of factors, and often adopts a language that suggests that these are defined risks and vulnerabilities that can be measured and observed and imply that vulnerability is located in the person with disability. These may include low sexual, body and self-esteem, negative attitudes of others, dependency and lack of knowledge (linked to wrongful myths and beliefs). These may be important issues to consider, but such a focus on proximal determinants detracts from thinking about broader, systemic issues that impact on people with disabilities. What clearly underlies all the many reasons referred to above, and characterises all forms of abuse, is inequality of power structures between abuser and victim, particularly for women with disabilities. However, resting at power as the defining issue may allow us to contextualise the issue, but it is helpful to also come back to understanding what power does at the individual and interpersonal level and the experience of sexual abuse and exploitation.

Case example: sexual exploitation of women with disabilities in Malawi

During 2006, a qualitative study among 23 women with disabilities was carried out in Malawi, one of the poorest countries in the world (Braathen & Kvam, 2008; Kvam & Braathen, 2008). The study took place in the central region, in and around Blantyre, the second largest city in the country. The 23 women were above 18 years old and had various types of disabilities: visual, hearing, physical, intellectual and albinism. They can all be characterised as poor.

The study aimed to explore patterns of abuse against women with disabilities, but found very few stories of what we classically think of as abuse; namely acts associated with physical violence or force. What the study did find were many stories of sexual exploitation, told by the majority of the women who participated. Many of the women reported that men without disabilities often said that they wanted to marry women with disabilities, but after they had sex, or after the women had fallen pregnant, the men would leave them. The men would not take any practical, emotional or financial responsibility for their children, but would leave all the responsibility to the disabled woman. The women felt that the men used them to gain sexual experience, or to have sex, but did not really want to be in a committed relationship and have a family with them. Many of the women felt they were undesirable as sexual partners, as wives and as mothers because of their disabilities. They expressed a strong wish to be married and have a family, but experienced that it was difficult to find a man who wanted to marry them. The result was that many of the women were less critical of men who proposed to them.

Women in Malawi in general were described by the participants as having a lower position than men, putting them at risk for abuse and exploitation. It is commonly men in Malawi who generate income, and thus women are often dependent on men for survival. This makes them vulnerable to abuse by men. Women with disabilities were said to have an even lower position than women without disabilities, adding to their vulnerability. One woman with albinism said:
[Women with disabilities] can be cheated into marriage. Not so many women with physical or visual impairment are married, so once she is proposed (to), she fails to say no. She thinks that she is lucky. Later, she is dumped.

These stories from Malawi are not unique to Malawi, or to these 23 women. Similar stories have been found in research from other parts of the world (as discussed above). The women in Malawi felt that their experiences were common for women in Malawi, both women with and women without disabilities. But they felt that women with disabilities were particularly exposed to this form of exploitation, both because they often have lower self-esteem, and because men see them as easy targets for exploitation because of their disabilities. The added burden of living in a context of poverty was perceived to increase their vulnerability. The women felt that if they were given an opportunity to empower themselves through education, employment and income, they would not be such easy targets for exploitation by men.

Reporting abuse

In reporting abuse and prosecuting offenders, people with disabilities have been found to face multiple barriers and challenges, and as such they lack appropriate legal protection, adapted to their specific needs and abilities. We will explore the specifics of this lack of legal protection below.

First, police, lawyers, judges and rape counsellors often lack knowledge of disability, and how to respond to and look after individuals with disabilities. People with disabilities are often not taken seriously, and as a result their ability and opportunity to consent and speak up for themselves is often reduced. For example, research by Antaki and colleagues (2015a, 2015b) in the UK used conversation analysis to examine actual interactions between police officers and people with learning disabilities making claims of sexual abuse. They found that police often only minimally acknowledged claimants distress, and where it was acknowledged it was attributed more often to difficulty with the process of reporting rather than their actual emotions (Antaki et al., 2015a), and where the police challenged the legitimacy of claimants" accounts, some claimants were able to rebut such challenges, whereas others were not, with the result that cases could not go to court (Antaki et al., 2015b).

There are also physical barriers to appropriate legal protection, such as lack of access to relevant legal and health facilities, lack of sign language interpreters and support systems for people with intellectual or psychosocial disabilities. The result is that people with disabilities often do not report sexual abuse and perpetrators often go unpunished (Dawn, 2014; Groce & Trasi, 2004; Heenan & Murray, 2006). Even when crimes are reported, responses do not always lead to conviction. This has, for instance, been found in an Australian study that looked at police records of sexual assaults. The study found that the cases where the victims had a disability (just over a quarter of the sample) were more likely not to proceed further than reporting compared to the overall sample of victims of sexual assault (Heenan & Murray, 2006; discussed also in Murray & Powell, 2008).

Some of the challenges of reporting abuse for people with disabilities, women in particular, have been said to include difficulty identifying the abuser, their testimony may not be taken seriously or they may be compromised in giving an adequate testimony due to various communication issues, they may be dependent on their abuser for care or support, and they find it more difficult than people without disabilities to leave the abusive situation (Glover-Graf & Reed, 2006; Plummer & Findley, 2012). In sexual abuse cases against people with disabilities, the perpetrator is more likely to be someone known to the victim, compared to cases where the victim does not have a disability, where the perpetrator is more likely to be unknown to the victim. The "known" perpetrator is often a friend, family member, carer or service provider. In these cases, the victim is often dependent on the perpetrator one way or another, and thus reporting the abuse becomes very difficult (Heenan & Murray, 2006; Nannini, 2006; Nosek et al., 2006; Plummer & Findley, 2012).

The type of disability is a factor here, with persons with learning and psychosocial disabilities having their capacity to give testimony questioned. However, other types of disabilities may also present concerns about testifying, and may position people with such disabilities at risk. For example, studies from South Africa have found that youth with hearing impairments are thought to be more vulnerable to sexual abuse due to their difficulty reporting crime (Mall & Swartz, 2012), or people with visual impairments are thought to be less likely to be able to identify their perpetrator (Philander 2007). Studies have shown that the likelihood of being caught influences perpetrators, and they are more likely to abuse people and in situations where they believe they are less likely to be caught. Children and people with disabilities are considered less likely to report acts of abuse, and are thus more vulnerable to abuse (Jewkes, Penn-Kekana, & Rose-Junius, 2005). It is important to consider though that in most cases the onus is placed on the person with disability to accurately report the crime, and less attention is perhaps given to conducting interviews in a manner that facilitates accurate reporting. For example, Antaki and colleagues (2015b) argue that police interviews with claimants with learning disabilities may not always follow guidelines for framing questions in an accessible and careful way, and involve a careful analysis of responses.

Some of the difficulty experienced by people with disabilities in accessing legal and medical assistance for sexual abuse and rape, may be as a result of the diminished value given to persons with disabilities. Marks (1999a) pointed out how often the language that is used to describe sexual crimes and its seriousness may be diminished when it comes to persons with disabilities. She points out how sexual crimes may be termed "abuse" rather than be considered serious crimes. She quotes Williams who states: "Women with learning disabilities are "sexually abused" . other women are raped. Men with learning disabilities are "physically abused" . other men are assaulted" (Williams, 1995, cited in Marks 1999a, p. 41). There is more attention given to sexual crimes committed against persons with disabilities, but as the statistics above show, the seriousness may still be somewhat diminished for persons with disabilities.

In the UK, hate crimes against people with disabilities are rarely reported to the police. The reasons for this were said by victims to be that they did not think they would be taken seriously and/or that they did not believe the justice system would do anything about it. With regards to sexual abuse in particular they felt that they were less likely to be taken seriously (Balderston, 2015).

Consequences of abuse

Abuse, whether it is intended, hidden or even unintended, has grave consequences for the victim (Cramer, Gilson, & Depoy, 2004). Abuse, violence, neglect and other traumatic events and processes often lead to mental, social or physical problems in the victim (Kvam, Loeb, & Tambs, 2007; MacMillan et al., 2001). The consequences seem to be even more pronounced when the survivor of abuse and trauma is a girl (Mitra et al., 2013) or has a disability (Kvam et al., 2007; Sobsey & Mansell, 1994).

Consequences of abuse reported by victims of abuse in several studies are increased stress levels, sadness, feelings of hopelessness, depression, anxiety, suicidal thoughts, poor bowel and bladder control, poor nutrition, poor skin, exacerbated impairment, distrust of others, social isolation and substance abuse (Golding, 1999; Hassouneh-Phillips, 2005; Mitra et al., 2013; Resnick, Acierno, Kilpatrick, & Holmes, 2005). As we have seen above, the risk for abuse increases when a person has a disability. Adding to this, abuse has also been found to further reduce the victim's ability to carry out activities of daily living (Cramer et al., 2004). It affects people's ability to work, negatively influences their health outcomes and chances of independent living (Hassouneh-Phillips, 2005; Smith & Strauser, 2008). Abuse may thus exacerbate disabilities. Despite this, persons with disability who have survived sexual abuse and sexual assault may experience barriers and difficulties in accessing psychological and medical services following the abuse (Groce, 2004; Sobsey & Doe, 1991).

Concluding comments

It has been argued that sexual abuse and exploitation against people with disabilities has received little attention because of the widespread assumption that people with disabilities are asexual, and thus not involved in sexual and romantic relationships
60 Sexual abuse and exploitation
(Barnett, Miller-Perrin, & Perrin, 2005; Brownridge, 2006). To prevent and address problems of abuse and exploitation of people with disabilities, there is a need to tackle the underlying issue of these wrongful assumptions. Furthermore, we need to increase knowledge and awareness about the particular vulnerabilities of people with disabilities and the underlying power dynamics of these (Brownridge, 2006; Cooke & Standen, 2002; Hague et al., 2011).

Given that people with disabilities often have increased health needs, because of their impairment or medical condition, they seek health care more often. Thus, health facilities have been suggested as well-suited arenas to look for and screen for symptoms of various forms of abuse, and for providing information and assistance to abuse victims. It is also important to ensure that services for victims of various forms of abuse are accessible for people with disabilities, given their increased vulnerability for abuse (Martin et al., 2006). However, there are many barriers to accessing health care services for people with disabilities, and we explore these in relation to sexual and reproductive health care in Chapter 7.


CHAPTER 6

HIV AND SEXUALLY TRANSMITTED DISEASES


As discussed in previous chapters, the myth that people with disabilities are asexual has often excluded people with disabilities from accessing sex education, which includes important education about contraception and sexual health. Many people with disabilities also suffer sexual abuse and rape. These are two significant risk factors for acquiring sexually transmitted diseases (STDs). In this chapter, we consider the issues of STDs, including HIV. We outline some of the key risk factors for acquiring STDs, and how persons with disabilities may be placed at increased vulnerability. These risk factors include poverty and unemployment, sexual abuse and exploitation, lack of sexual health knowledge and unsafe sexual behaviour. We go on to look briefly at the prevalence of sexually transmitted diseases, particularly HIV. There has been an increase in attention to the relationship between disability and HIV. This is not only in terms of risk for HIV infection, but also the disabling effects of HIV, and we go on to look at this in the latter half of the chapter. Although we focus predominantly on HIV in this chapter (partly because this has been the specific topic of some of our work), many of the issues involved, particularly risk factors, apply to other STDs as well.

Risk factors for HIV and STDs

There has been growing attention highlighting the possible increased risk for HIV infection for persons with disabilities, as a consequence of increased vulnerabilities to various risk factors for HIV and other STDs. These have been outlined in various recently published reviews (Groce et al., 2013; Hanass-Hancock, 2009; Rohleder, Braathen, Swartz, & Eide, 2009). The majority of studies investigating HIV risk for persons with disabilities have concentrated on people with learning disabilities, people with mental health problems and persons who are deaf or have a hearing impairment. As Groce and colleagues (2013) point out, far less research has been conducted on the risk of HIV among people who have visual impairments, people who have physical disabilities, people with albinism or people who have multiple disabilities. Furthermore, much of this research comes from North America or Africa, with little or no research coming from countries in Asia, Europe and South America. In considering HIV (and other STDs) there are various risk factors, where people with disabilities are positioned at a particular disadvantage. These include poverty and unemployment, sexual abuse, low levels of sexual health knowledge and unsafe sexual practices.

Poverty and unemployment

Before going on to discuss the links between poverty and sexual health, it is useful to outline the broad relationship between poverty and disability. As mentioned in Chapter 1, the majority of people with disabilities in the world live in low- and middle-income countries. At a national level, people with disabilities are more likely to live in relative poverty in relation to the general national population. In an early review of the literature on disability and poverty, Elwan (1999) concluded that persons with disabilities experienced more unemployment and are more likely to live in relative poverty than the rest of the population in both high- and low-income countries. More recent research has found this to still be the case. For example, a recent cross-country study (Mitra, Posarac, & Vick, 2013) of 15 countries, which the authors classify as "developing" nations, across Africa, Asia, South America and the Caribbean, looked at the prevalence of disability and poverty using a number of measures of poverty. The authors found that in most of the 15 countries, persons with disabilities experience greater levels of poverty. They concluded that "persons with disabilities, on average, experience multiple deprivations at higher rates and in higher breadth, depth, and severity than persons without disabilities" (p. 11). They further found that women with disabilities experienced greater deprivation than men with disabilities, and that persons with disabilities over the age of 40, or persons with multiple disabilities were most disadvantaged. Additionally, they found that persons with disabilities across the 15 countries had lower levels of education and had lower rates of employment than persons without disabilities.

This same correlation between disability and poverty has been found in the USA (Brucker, Mitra, Chaitoo, & Mauro, 2015). In the USA, persons with disabilities have been found to have lower rates of employment, and those who do work, are more likely to work part-time and have lower wages (Schur, 2002). Schur (2002) goes on to show that employment rates and experience also differ according to the type of disability, with persons with mobility and mental disabilities being most disadvantaged. Schur (2002) indicates that not only is employment a protective factor for poverty, but it may alleviate the social isolation and psychological well-being of persons with disabilities, when compared to persons with disabilities who are unemployed. This is correlational data, and cannot be shown as a cause and effect, so other factors are likely to be at play here, but the benefits of employment are clearly established.

Poverty and unemployment may be considered risk factors for STDs and HIV, due to poor nutrition and the resultant compromise in immunity to infections, and because poverty may lead some persons with disabilities, particularly women, to resort to transactional sex and sex work as a means for survival (Tomlinson, Rohleder, Swartz, Drimie, & Kagee, 2010). This has been found to be the case in relation to disability and HIV risk, where poverty may lead some women with disabilities to turn to sex work (Smith, Murray, Yousafzai, & Kasonkas, 2004). In higher-income countries, where sex work may still be a source of needed income, people with disabilities may be further disadvantaged through reduced access to support services. For example, a study from Sweden (Kuosmanen & Starke, 2013) showed that people with intellectual disabilities involved in prostitution (who were often forced into selling sex) may fall between the cracks and not be properly supported, as those professionals working with prostitution may not have the knowledge and skills to work with intellectual disability, and those professionals working with intellectual disabilities may not easily detect prostitution among their clients. Aside from transactional sex, poverty may increase the chances for unsafe sex. Gender inequality results in many women being dependant on men for economic resources, and they may fear negotiating safe sex with their partners out of the possibility of being abandoned and left without resources (Tomlinson et al., 2010). This is compounded by disability inequality. Poverty also acts as a barrier to accessing health care, including sexual and reproductive health care (see Chapter 7 for further discussion on this). This not only impacts on the opportunity to gain sexual health knowledge, but may result in STDs being undetected and untreated. The presence of untreated STDs in turn increases the risk for HIV infection (Laga et al., 1993).

Sexual abuse and exploitation

The sexual abuse and exploitation of persons with disabilities was discussed in Chapter 5, and the links to risk for HIV and other STDs are obvious. We shall not cover this ground again here, but there is one aspect that is worth revisiting that is particularly related to STDs. As discussed in the previous chapter, myths about HIV "virgin cleansing" have been attributed to some incidents of the rape of women with disabilities. The belief is that a person who has a STD can be cured of it by having sex with a virgin, and has prevailed across various cultures around the world (see Davidson, 2001). Young women with disabilities, who may be assumed to be asexual and thus virgins, may be targets of such cleansing myth practices. Historical reports suggest that brothels in Victorian England provided women with learning disabilities for male clients who wanted to rid themselves of their syphilis by having sex with a virgin (Groce & Trasi, 2004). In recent years, anecdotal reports suggest that the cleansing myth for HIV has resulted in the rape of women with disabilities in some parts of the world (Groce & Trasi, 2004). There is little clear evidence of such practices, with much of it being anecdotal, but it has been argued that virgin cleansing is a cause for some of the many child rape cases in South Africa (Pitcher & Bowlby, 2002). As noted in
Chapter 5, this assertion is controversial and has been contested by others as lacking evidence (Jewkes, Martin & Penn-Kekana, 2002). However, in some cases, the myth of virgin cleansing has been reported as a motivational factor in some rape cases (e.g. Meel, 2003). An ethnographic study by Leclerc-Madlala (2002) suggests that the belief of virgin cleansing for HIV may indeed exist. She also cites two South African survey studies that report on a fairly widely held belief in the virgin cleansing myth. However, she goes on to caution that while there may be some belief in this cultural myth, it is not proof of it being widespread or actually practised. However, regardless of the incident of "virgin cleansing" or not, the high prevalence of sexual abuse and exploitation of people with disabilities is a significant transmission route for sexual infections and diseases.

Lack of sexual health knowledge

As detailed in Chapter 4, persons with disabilities are often excluded from, or face numerous barriers to, accessing sexual health education. This has an obvious consequence for acquiring an accurate level of knowledge about sexuality and sexual and reproductive health. Sexual health education is universally acknowledged as an essential component in the prevention of STDs and HIV transmission. The low level of sexual health knowledge among people with disabilities has been observed across the world. For example, in Turkey, very low levels of knowledge about sex were found among a sample of adolescent students with mild to moderate intellectual disabilities (Isler, Tas, Beytut, & Conk, 2009). In Ireland, very rudimentary levels of knowledge about sex and sexually transmitted diseases were found for a sample of young adults with intellectual disabilities (Healy, McGuire, Evans, & Carley, 2009). In Brazil, lower levels of HIV transmission knowledge were found for a sample of deaf students, as compared to hearing students (Bisol, Sperb, Brewer, Kato, & Shor-Posner, 2008). In a recent review of the literature on sexual health knowledge among people with learning disabilities (Borawska-Charko, Rohleder, & Finlay, 2017), it was found that people with learning disabilities particularly lacked knowledge about contraception and sexually transmitted diseases.

Persons with disabilities have also been excluded from general HIV prevention campaigns due to messages being inaccessible to people with disabilities, for example not available in Braille, or without sign language interpretation (Groce, 2004; Rohleder, Swartz, Schneider, Groce, & Eide, 2010). Poor access to sources of information has been found to be linked to lower access to HIV counselling and testing, and that women with disabilities are at most disadvantage in access issues (Eide et al., 2011). Such barriers to access would concern access to information about other STDs, not just HIV.

A lack of relevant HIV prevention education results in a number of misconceptions about HIV, the modes of its transmission and prevention. For example, in Swaziland, a study measuring levels of HIV knowledge among disabled and non-disabled persons showed that the persons with disabilities had many more misconceptions about the mode of HIV transmission (Yousafzai, Dlamini, Groce, & Wirz, 2004). In a study from Nigeria (Groce, Yousafzai, & Van der Maas, 2007), deaf people were found more likely than hearing persons to believe that HIV can be transmitted through dirty places, touching and hugging, kissing, germs in the air and mosquito bites. A recent survey study in South Africa (Eide et al., 2011; Rohleder, Eide et al., 2012) found that women with disabilities had lower levels of HIV knowledge and less access to HIV prevention information than men with disabilities, confirming the well-established finding that women with disabilities are often most disadvantaged in terms of accessing education (and other) opportunities.

We have focused above on the risk for HIV, but low levels of sexual health education are a serious issue for various situations and contexts, particularly contexts where there is already increased vulnerability due to disadvantage and oppression. A recent study of refugees with disabilities in humanitarian settings in Kenya, Uganda and Nepal (Tanabe, Nagujjah, Rimal, Bukania, & Krause, 2015) found that the refugees interviewed had low levels of knowledge about sexual and reproductive health, and low levels of knowledge about their sexual health rights, including where and how to seek help and care following sexual violence. At the time of writing this book, we have witnessed the refugee crisis on the borders of Europe, with people fleeing conflicts in Syria and other regions of northern Africa. The particular plights of persons with disabilities within such crises become buried under the broader issues involved. The intersections with issues of power and conflict add an additional layer of vulnerability, with persons with disabilities, and their needs, including sexual and reproductive health needs, becoming lost. We will discuss access to sexual health care further in Chapter 7.

Unsafe sexual practices

There are a number of studies that have looked at the prevalence of unsafe sex practices among persons with disabilities. A number of studies have observed that, as is the case with non-disabled people, many persons with disabilities do not always wear condoms during intercourse (for example, Blanchett, 2000; Cook, 2000; Jackson & Wadley, 1999; Nosek, Howland, Rintala, Young, & Chanpong, 2001). In a study from Malawi (Munthali Mvula, & Ali, 2004), it was found that 73 per cent of persons with disabilities had not used a condom during sex. Similar levels of non-condom use were found for persons with disabilities in Uganda (Mulindwa, 2002). In South Africa, a survey study of sexual risk behaviours of men and women with disabilities (Rohleder, Eide et al., 2012) indicated high levels of unsafe sex, usually sex without a condom, for both men and women. In this study, men were more likely to report more sexual partners. Given that Malawi, Uganda and South Africa are high HIV-prevalent areas, this is an obvious concern for sexual health. Some of this lack of condom use may be due to lack of knowledge, or negative attitudes about condoms, but may also be due to lack of access to condoms, due to poorer access to sexual health care (see Chapter 7).

The use of substances during sex increases the chance of unsafe sexual practices occurring. Substance abuse has been suggested as being a serious issue for personswith disabilities (Bachman, Drainoni, & Tobias, 2004). Substances may be used by persons with disabilities as a means of coping with the impact that having a disability has on their everyday life and sense of self. For example, in a South African study on youth with physical disabilities acquired following a spinal cord injury (Njoki, Frantz, & Mpofu, 2007), substances were reportedly used as a means to cope with the frustrations involved in adjusting to a new identity as a physically disabled youth. Some studies have indicated higher levels of substance use among persons with disabilities when compared with a sample of non-disabled people. In an early survey study, Li and Ford (1998) found that women with disabilities reported higher rates of illicit drug use, such as marijuana and cocaine. In a study of American youth with physical disabilities and psychosocial disabilities (Blum, Kelly, & Ireland, 2001), it was found that youth with physical disabilities were more likely to use alcohol, and youth with emotional disabilities were more likely to have used marijuana than their non-disabled peers. What matters for our discussion of STDs is that the use of substances during or immediately preceding sex, such as alcohol, increases the chances of taking part in unsafe sex practices (e.g. sex without a condom). Blanchett (2000) found that 36 per cent of young adults with learning disabilities in her study had used alcohol or drugs during sexual intercourse. In a South African survey study (Rohleder, Eide et al., 2012), more men with disabilities than women with disabilities reported having sex without using a condom after having used alcohol.

While we have outlined above some of the key risk factors for HIV (and other STDs), these do not stand in isolation from each other; they create intersecting risks, which may place some persons with disabilities at greater levels of risk/vulnerability. For example, in a survey study of 91 adolescents with physical disabilities in South Africa (Maart & Jelsma, 2010), it was found that while there were no significant differences in the sexual activity, substance use and perceived risk for HIV when compared to a non-disabled sample, the adolescents with physical disabilities were less likely to report that they felt able to protect themselves against HIV, and reported less regular condom use. Among this sample, 12.5 per cent of females and 10 per cent of males reported that they had experienced being forced to have sex. Moreover, more adolescents with physical disabilities (18 per cent) reported ever having had a STD when compared to a national non-disabled sample (4 per cent), although it should be noted the size of the non-disabled sample was much greater. This study clearly indicates that the myth of asexuality is false, and points to the possible higher risk for HIV infection as a result of the experience of sexual coercion, possible lower levels of knowledge about HIV prevention and differential access to condoms. Similar findings came from Nigeria (Olaleye, Anoemuah, Ladipo, Delano, & Idowu, 2007), where young people with disabilities were as likely to be sexually active as their non-disabled counterparts, but had less access to sexual health knowledge, poorer access to contraceptives and condoms and experienced increased sexual violence.

Furthermore, some studies have suggested that some persons with disabilities have their first sexual experience at a younger age when compared with a sample of non-disabled peers. For example, in Germany, a survey study of 140 adolescents with disabilities and 306 without disabilities (Wienholz, Seidel, Michel, Haeussler-Sczepan, & Riedel-Heller, 2016) found that the sample of youth with disabilities had sexual experiences at a younger age. However, the authors do point out that a larger percentage of the sample of youth with disabilities were younger, so this may be reflected in their results. The study further found that the sample of youth with disabilities reported a younger age for onset of sexual activity compared to the age of onset reported by the sample of youth without disabilities. Similar findings were obtained by studies in Sweden (Brunnberg, Bostrom, & Berglund, 2009) and the USA (Blum et al., 2001). In the latter, youth with learning disabilities and emotional disabilities were found to be more likely than their non-disabled peers to have had sex before the age of 12. In South Africa, an early age of onset of sexual experience was also found for youth with visual disabilities (Kelly, Ntlabati, Oyosi, van der Riet, & Parker, 2002). Reasons for these findings are not clear, although one may be the prevalence of coerced sex (Brunnberg et al., 2009 . see also Chapter 5). Wienholz and colleagues (2016) suggest such trends may also be a result of disability stigma and negative body image, with the young person with disability agreeing to have sex out of a need to feel accepted.

As with substance abuse, some of the unsafe sex practices may intersect with disability stigma. Disability stigma may lead to low self-esteem in persons with disabilities and feelings of being undesirable and sexually unattractive to others. Low self-esteem may have consequences for sexual health. Not only does low self-esteem impact on a person's confidence in negotiating safe sex (Yousafzai & Edwards, 2004), but it may lead some persons with disabilities entering into potentially risky sexual relationships out of a need to feel accepted. For example, in a study of women with physical disabilities in the USA, Becker and colleagues (1997) reported on findings that suggested that women with physical disabilities became sexually promiscuous as they became appreciative of any sexual attention that they received. In South Africa, a study by Wazakili and colleagues (2006) reported that for some young people with physical disabilities, the need to be accepted and loved was more important than ensuring that they practice safe sex. Similar issues were reported by schools and organisations supporting young people with disabilities in South Africa (Rohleder, 2010b). In this study, one of the teachers at a school for young people with cerebral palsy reported that 

lots of our children they just want to be accepted and they just want to be loved and whoever makes a move on them [. . .], they will actually go for it because of that wanting to be cared for and loved. (Rohleder, 2010b, p. 860)

Another teacher also reported how, in her view, some of the young women with disabilities had a strong desire to become pregnant as a way of proving their "normality" as a woman. This meant that some girls were willing to have sex without a condom, regardless of the risk for HIV, because their wish was to become pregnant.

It is important to state that it is not the individual's behaviour that should be problematised, but rather the socio-cultural attitudes that shape these experiences in the first place. This disability stigma may be layered on other forms of stigma, increasing the levels of vulnerability. In a study comparing the sexual risk behaviour among sexual minority men (i.e. men who do not identify as heterosexual) with a disability and those without a disability (Dispenza & Watson, 2015), it was found that the men with disabilities reported more sexual partners and higher levels of sexual risk behaviours than the men without disabilities. The authors suggest that this may be attributed to the layered stigma of having a disability and being a sexual minority. This was explored to some extent in a qualitative study from Canada, which examined the experiences of ten "queer" and "trans" young people diagnosed with intellectual disabilities (McClelland et al., 2012). All participants in their study reported experiences of their opportunities for exploring their sexuality being controlled by their parents and carers, with young people being given messages that sex is forbidden. However, all were sexually active, and while they considered their home as the most comfortable and safest spaces to have sex, many had sex in public spaces such as bathhouses and outdoor spaces, where they felt less comfortable and less safe, and seemed more likely to not use condoms. Some of the reported reasons for why they did not use condoms were to do with curiosity and sexual desire. Although the authors do not specifically link an increased risk to being a sexual and gender minority youth, they do conclude that these unsafe settings for sex are resorted to as a result of a lack of accessible alternatives. Moreover, the authors point out the protective aspect of the participants being in some ways part of an urban LGBT community, and argue that LGBT youth with disabilities in non-urban environments are likely to be at particular risk.

Prevalence of STDs and HIV

Individual studies have indicated the prevalence of STDs generally among persons with disabilities (Jackson & Wadley, 1999; Mulindwa, 2002; Nosek, Howland, Rintala et al., 2001). Some studies have suggested a potentially higher prevalence of STDs among persons with disabilities when compared to prevalence rates in the general population (e.g. in India; Carey, Ravi, Chandra, Desai, & Neal, 2007). In a large epidemiological study (Mandell et al., 2008) from the USA that looked at the reported incidences of STDs (using Medicaid data) among people identified as having attended a special education school, it was found that young people with learning difficulties, particularly women diagnosed as having "mental retardation", were at increased risk for contracting STDs.

Despite the enormity of the global HIV epidemic, and the suggested increase risk for people with disabilities, there are few prevalence studies worldwide that include statistical data on HIV prevalence among persons with disabilities. Most of these studies report on HIV prevalence (among other factors) within a specific study sample, and generally use relatively small sample sizes, are location specific, and under-represent females. The majority also do not include a comparison group against which prevalence rates can be compared and interpreted. An exception is a study by Taegtmeyer and colleagues (2009) comparing HIV prevalence among hearing (n = 1,649) and deaf (n = 1,709) clients attending a HIV voluntary counselling and testing service in Kenya, which found lower prevalence rates among the deaf sample. A review of these studies (Groce et al., 2013) indicate some differences across types of disabilities, with person with hearing impairments and psychosocial disabilities seeming to be at equal risk for HIV infection as the general population and persons with learning disabilities being less affected. There was also some indication of regional differences, with prevalence rates among persons with disabilities in studies in low-income countries (e.g. Zimbabwe and Uganda) being higher than those from high-income countries (USA). However, given the poor representativeness of the samples, it is difficult to make any inferences from these studies.

In recent years, the South African national household survey of HIV incidence has started to include statistical data for persons with disabilities. Given the high rates of prevalence of HIV in South Africa, and the fact that this is a large national sample, these data allow us to gain a more informed picture of what the situation is. The most recent survey (Shisana et al., 2014) reported persons with disabilities as a key population group, having HIV prevalence higher than the national average (16.7 per cent prevalence as opposed to 12.2 per cent national prevalence). This presents a rise in reported prevalence for persons with disabilities and the general population from a previous survey report (Shisana et al., 2009).

Disabling effects of HIV

We have so far looked at the risk for STDs for persons with disabilities. But STDs can lead to disabling effects themselves. For example, syphilis can lead to neurological impairments and can also result in spinal disabilities (Wiwanitkit, 2007). Rather than examine the disabling effects of different STDS, we will focus only on the disabling effects of HIV, which is increasingly becoming regarded as a rehabilitation issue (Nixon, Forman et al., 2011).

HIV infection and subsequent development of acquired immune deficiency syndrome (AIDS) had severe debilitating consequences for patients in the early years of the epidemic. These were the result of opportunistic infections as a result of an increasingly impaired immune system. The development of AIDS led to various brain disorders, including dementia (Catalan, Meadows, & Douzenis, 2000). With the arrival of highly active anti-retroviral treatments (HAART) in the late 1990s, HIV has increasingly become a chronic illness, rather than the fatal illness it once was. People who are infected with HIV are now able to live a normal lifespan under treatment for HIV as a chronic illness. With this, however, comes experiences of the disabling effects of living with HIV, including new disabilities associated with the disease, and the side effects of medication. These would be more pronounced for people living with HIV in contexts of poverty (Nixon, Hanass-Hancock, Whiteside, & Barnett, 2011).

Nixon, Forman, and colleagues (2011) outline the various disabling effects associated with HIV. These include disabilities associated with HIV itself; that is, those resulting from impairments that limit functioning and activity and restrict participation. These include neurocognitive and neurological problems, and cardiovascular problems, which may affect mobility, cognition as well as sensory functioning (hearing and vision as a result of opportunistic infections such as shingles, meningitis and tuberculosis). Side effects of medication may include somatic complaints (such as fatigue, headaches and pains) that limit mobility and activity, and cause damage to body functioning (particularly liver and kidneys), and stigmatising conditions such as lipodystrophy syndrome. However, continued developments in medical treatments have attempted to reduce these harmful side effects. Living with HIV as a chronic illness also impacts on mental health and well-being, with higher rates of anxiety, post-traumatic stress, depression and suicide reported in people living with HIV (Catalan et al., 2011; Kagee & Martin, 2010; Sherr, Clucas, Harding, Sibley, & Catalan, 2011).

There has been increased research attending to the disabling effects of HIV. These studies have often used the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001; see Chapter 2) as a framework for measuring impairments that limit activity and participation. For example, in South Africa, a cohort study of 1,042 adults living with HIV (Hanass-Hancock, Myezwa, & Carpenter, 2015) who had been on anti-retroviral treatment for at least six months, found that a third of the participants experienced moderate to severe activity limitations. Activity limitations were measured using the WHODAS, a commonly used measure based on the ICF, which measures disability in relation to key activities of daily life: mobility, cognition, self-care, life activities (e.g. work), participation (e.g. participating in community activities) and "getting along" (dealing with people, maintaining friendships). They further found a positive correlation between activity limitations of mobility and cognition, and depression, particularly for women. An earlier cross-sectional study looking at samples in Brazil and South Africa (Myezwa, Buchalla, Jelsma, & Stewart, 2011), found that the most commonly reported problems related to issues with weight maintenance and problems with mental functioning (sleep disturbances, energy and drive, and emotional problems), which tended to impact on participation in activities. Those in more advanced stages of HIV disease reported difficulties with pain and muscle weakness and had the most activity limitations.

A recent qualitative study exploring the experiences of disability among 19 people (10 were women) living with HIV in South Africa (Hanass-Hancock, Myezwa, Nixon, & Gibbs, 2015) provides an interesting look at the subjective experience of disability and reported changes over time. All participants in the study reported experiencing some disability in relation to sensory functioning (vision and hearing), pain, mental functioning, reproductive functioning, and problems with digestive, endocrine and metabolic functioning. Some participants also reported experiencing activity limitations in relation to self-care, mobility or domestic life. Participants spoke about how pain limited their activities in various ways, even with some participants sometimes being unable to walk or stand. These experiences also impacted on their ability to participate in work, in relationships and in community and social life. For women, this impacted on their gendered roles of childcare, parenting and domestic work around the house, and at times resulted in criticisms from others. Women also reported losing social support, particularly from their partners who left, once they became more ill. The authors found that for men, these experiences were emasculating with men's concerns related to "losing respect, no longer being able to be the head of the household, with children/wives challenging their authority" (p. 2056).

As mentioned earlier, although the development and incident of more severe forms of cognitive impairments (e.g. AIDS-associated dementia) have declined due to effective treatments, there has been an increase of less-severe forms of HIV-associated neurocognitive disorders (Foley, Ettenhofer, Wright, & Hinkin, 2008). A qualitative study from Canada (Gallagher et al., 2013) sought to explore the subjective experiences of living with such mild cognitive impairment among a sample of 16 women living with HIV. The women interviewed reported experiencing a number of impairments, including fatigue, memory and concentration problems and problems with fine motor skills and balance. These impairments impacted on the women's activity and participation at work, participation that was meaningful and important for the self-esteem of all the women interviewed. These experiences also impacted on their participation in social and community activities, leading to a sense of isolation, loneliness and depression. Interestingly, the study further found that those women who were not mothers felt that caring for children would be an added stress and burden; however, those women who were already caring for children, reported this as a positive and enabling experience, which improved their ability to cope.

Our discussion so far has looked at the risk for sexually transmitted disease (with particular attention to HIV) among people with disabilities, as well as the disabling effects of HIV. These have been two separately evolving fields of research, which have become increasingly established (Hanass-Hancock & Nixon, 2009). Meanwhile, very little is known about the intersection of disability and HIV and how this is experienced. One of the few research projects looking at this comes from Zambia, which we now look at as a case example.

Case example: persons with disabilities living with HIV in Zambia . the Sepo study

The Sepo study in Zambia (Njelesani, Nixon, Cameron, Parsons, & Menon, 2015; Parsons, Bond, & Nixon, 2015; Wickenden, Nixon, & Yoshida, 2013; Yoshida, Hanass-Hancock, Nixon, & Bond, 2014) explored the lived experiences of persons with physical, sensory or learning disabilities (12 women and 9 men) who became infected with HIV.

Parsons and colleagues (2015) looked at the experiences of the double stigma of disability and HIV as it related to seeking HIV treatment and care and stigma within the community. The 21 participants in the study reported experiencing the double burden of disability stigma and HIV stigma, with many feeling like they were perceived by others as "less than human" (p. 7), due to society"s negative attitudes about the sexuality of person with disabilities, and that becoming HIV contradicted their assumptions about asexuality. Such stigma was also experienced from health care providers when accessing HIV services. For example, one participant in the study reported being laughed at by the doctor for seeking HIV care, with the doctor seeming to express disbelief that the participant could be sexual. Some participants also reported experiences of stigma and verbal abuse even when other HIV-clinic attendees saw them there. There were a few quotes from participants in the paper that implied that others felt that the participants would be better off dead than living with a disability and HIV.

Some of the stigma and discrimination experienced was also gendered, particularly when it came to relationships. Wickenden and colleagues (2013) investigated the lived experiences of the 12 women with disabilities who became infected with HIV. As the authors point out at the start of their article, the association that HIV has with metaphors of sexual deviance can stand in contrast to "societies" imagination" (p. 1) of the sexuality of people with disabilities (often seen as asexual). The women spoke about how HIV had a significant impact on their intimate relationships, with most women reporting that their male partners had left them after they had disclosed their HIV status. The reaction from partners pointed to the women's experiences of limited agency in these relationships, with the male partners making the decisions about the consequences for their relationship. One of the interesting findings from this study is the difference between the visible disability and the "invisibility" of HIV, where some women felt that (potential) partners can make their decision about entering a relationship with a woman with disability having the knowledge about that disability, but with HIV, this requires disclosure, unanticipated by the partner. As one woman is quoted as saying: "Cause the disability is being seen. When someone comes to propose me, they see that I"m on the wheelchair, but with HIV/AIDS it's different" (p. 5).

Some of the women in the study spoke of having a disability and a HIV diagnosis as a "double burden" that impacted on their role as a woman, wife and mother. They reported that their HIV diagnosis made them less desirable as a woman to their male partners. As one woman is quoted as saying when talking about how HIV has impacted negatively on her gender role: "as a wife, I have to execute my duties" (Wickenden et al., 2013, p. 5). Those whose partners had left them because of their HIV diagnosis had to fend for themselves (and their children), and the double burden of disability and HIV presented a barrier to obtaining financial resources. In contrast, most of the men with disabilities in the study were still in relationships after receiving a HIV diagnosis, and were being cared for by their female partners (Yoshida et al., 2014). For some of the male participants, HIV had not impacted on their sexual life, although some activities within the relationship had changed. There was also more of a sense of hope about future relationships among the male participants than among the female participants. In contrast to the women's experiences, the authors conclude that "being male appeared to create space for support regardless of the disadvantages of being HIV-positive and disabled" (Yoshida et al., 2014, p. 2164). Where some of the women were able to exercise some agency was in choosing to abstain from having sexual relationships (Wickenden et al., 2013).

The intersection of disability, HIV and employment was looked at more closely in the paper by Njelesani and colleagues (2015), which explored the experiences of all 21 persons with disabilities in the Sepo study. The authors describe a "triple burden" (p. 52) relating to the stigma of disability, HIV and unemployment. The participants spoke of the various layered barriers they faced to finding employment, first as a person with disabilities, but then made worse by being HIV-positive. Those who had work previously, reported having lost their work once they were diagnosed with HIV. As one participant was quoted as saying: "I"m considered to be somebody who"ll be giving a lot of burdens to the, to my bosses" (p. 53). Participants spoke not only of difficulties in accessing opportunities for work, but also of the discrimination from potential employers and estrangement from family, friends and the community. As a result, participants felt they had to fend for themselves and resorted to begging for money. One of the female participants thought of her disability as something of an advantage in this regard, as it meant she could beg for money, rather than engage in sex work, which she felt was the plight of non-disabled women with HIV (Wickenden et al., 2013). Although this woman framed this as something of a positive, what is clear is that there was a lack of social support available.

The experiences researched in the Sepo study are shaped by the context of a low-income country, with limited government social support and access to health care and work opportunities. However, given the marginalisation of persons with disabilities globally, it is likely that many persons with disabilities who are also HIV-positive experience the similar double stigma and discrimination described above. As discussed in Chapter 3, and as explored in the Sepo study, such experiences intersect with gender (as well as other identities).

Concluding comments

This chapter has clearly outlined that persons with disabilities (like many people without a disability) do contract sexually transmitted diseases. Due to the increased vulnerabilities of many people with disabilities, particularly women, outlined in this and previous chapters, there is a possibility that people with disabilities may have higher prevalence rates of STDs and HIV. This is not clearly established, but some of the few studies looking at this issue indicate this conclusion. STDs (particularly HIV) may further compound existing disabilities or result in the development of new disabilities. That persons with disabilities need sexual health care services is without doubt. Yet, as with other aspects of sexual health outlined in previous chapters, persons with disabilities face numerous barriers to sexual health and reproductive health care services. This is explored in the next chapter.


CHAPTER 7

DISABILITY AND SEXUAL AND REPRODUCTIVE HEALTH CARE


As highlighted in previous chapters of this book, people with disabilities have needs for sexual and reproductive health care services. However, as with other areas in society, many people with disabilities are partly excluded from such services. This chapter will discuss the various structural/environmental and attitudinal barriers faced by people with disabilities when accessing sexual and reproductive health care services. The chapter will draw on our research on access to health care services in South Africa and Malawi as particular illustrative examples, but we will also draw on studies conducted in other countries. The chapter will also look specifically at the barriers to accessing reproductive health care that affect women with disabilities and their desire for motherhood. But first, we consider barriers to access of health care generally for people with disabilities.

Access to medical health care: an overview

Access to medical health care is a universal right that is protected by many international conventions and declarations (e.g. United Nations, 1948, 2006). This right is realised daily by the many people who benefit from advanced health care systems within nations around the globe, some of which provide services that are free at the point of care (e.g. the NHS in the UK). However, equitable health care, defined by Whitehead (1992, p. 433) as "equal access to available care for equal need, equal utilization for equal need [and] equal quality of care for all", remains a distant realisation for many. Specifically, people living in low-income countries, or poor areas of high-income countries, generally have less access to medical health care compared to others (Peters et al., 2008). For example, they may experience increased restrictions on geographic accessibility, financial practicality, availability and cultural appropriateness of utilising medical health care (Peters et al., 2008; Saloojee, Phohole, Saloojee, & Ijsselmuiden, 2007; Van Rooy et al., 2012). The growing consensus in the literature is that these barriers to access are complex, holistic, interconnected and in particular shaped by whether an individual lives in poverty (Braathen et al., 2016; Braathen, Vergunst, Miji, Mannan, & Swartz, 2013; Grut, Miji, Braathen, & Ingstad, 2012; Hwang et al., 2009; Ingstad, Munthali, Braathen, & Grut, 2012; Lee at al., 2010; McColl et al., 2010). In this sense, poverty must be understood as something reaching beyond economic deprivation, encompassing also a lack of opportunity to participate fully in all areas of society (Green, 2006; Marmot, 2006). In terms of health, poverty prevents people from leading healthy lives by restricting their access to medical care, as well as food, water and sanitary conditions (Grut et al., 2012).

Wagstaff (2002) highlights that the link between poverty and restricted access to medical health care is part of a larger recursive cycle, where poverty leads to ill health, and ill health maintains poverty. In all regions of the world, there is a clearly observed "health gradient" (Adler & Snibbe, 2003; Marmot, 2010; see also Rohleder, 2012 for a discussion on poverty and health disparities). In fact, MacLachlan, Mannan, and McAuliffe (2011) suggest that, in terms of health care, the access that people with disabilities have to services can be used to assess the degree of equity within a country's health care system.

Although health care systems vary greatly between countries, the picture painted by global evidence to date suggests that people with disabilities are at a severe risk of non-equitable health care because they experience restricted access to medical health services worldwide (Braathen et al., 2013, 2016; Gibson & O"Connor, 2010; Groce et al., 2013; Grut et al., 2012; Ingstad et al., 2012; Nosek & Simmons, 2007; Rohleder, Braathen, Swartz, & Eide, 2009; Trani et al., 2011). In comparison to other service users, people with disabilities face unique and individualised structural/environmental and attitudinal barriers to accessing health care. These include difficulty getting to and from health care facilities, physically inaccessible buildings, information presented in non-accessible formats, and negative attitudes toward service utilisation held by both health care professionals and the wider population (Iezzoni, Killeen, & O"Day, 2006). Moreover, as barriers to health care are more pronounced for those of low socio-economic status, people with disabilities are at a particular disadvantage when accessing health care due to their increased likelihood of living in poverty. These reasons contribute to explaining why people with disabilities tend to report lower levels of satisfaction with their medical health care compared to people without disabilities (Iezzoni, Davis, Soukup, & O"Day, 2002, 2003, 2004; Jha, Patrick, MacLehose, Doctor, & Chan, 2002).

Recent data derived from 51 countries shows higher rates of unmet health needs among people with disabilities compared to people without disabilities (WHO & World Bank, 2011). This disparity is accentuated among people with disabilities living in lower-income countries who report being unable to access health care more frequently. These data also indicate that people with disabilities have additional health needs over and above the general population. Although some may consider the increased health demands on people with disabilities as an explanation for why their care needs are more frequently unmet, a critical health perspective argues that this reasoning is unsatisfactory. As Eide et al. (2015) state, approaches to health should stress equitable outcomes. This means that should people with disabilities experience greater need for health services, any barriers to their access must be removed until these needs are met. In the next section, we will discuss these barriers in the context of sexual and reproductive health care.

Access to sexual and reproductive health care

Provision of sexual and reproductive health care is vital to ensure that people can lead pleasurable, safe sex lives and make free, informed choices about whether to start families together. Sexual and reproductive health care covers a range of services, including screening and treatment for STDs, assistance with family planning, and delivery of antenatal, perinatal and postnatal care. Leading a healthy sexual life is important for each and every person, including for people with disabilities. In light of this, it should be of no surprise that access to the highest possible standard of sexual health care is recognised globally as a human right for all (WHO, 2009). The literature assessing access to such care in the context of disability has typically focused on the needs of professionals and the level of support they should deliver to service users (e.g. Bitzer, Platano, Tschudin & Alder, 2007; Fronek, Kendall, Booth, Eugarde, & Geraghty, 2011; Post, Gianotten, Heijnen, Lambers, & Willems, 2008; Rueda, Linton, & Williams, 2014). However, as outlined in the previous section, people with disabilities face disparities in health care due to a confluence of structural/environmental (e.g. inaccessible buildings) and attitudinal (e.g. negative views of service utilisation) barriers. A critical health perspective emphasises that it is these barriers that need to be the focus of efforts aiming to ensure equitable health care for people with disabilities (Eide et al., 2015), including in the area of sexual and reproductive health care.

One such barrier is difficulty getting to and from sexual and reproductive health care facilities. This can be particularly problematic for people with physical disabilities living in low-income countries (Braathen et al., 2016; Mavuso & Maharaj, 2015; Smith, Murray, Yousafzai, & Kasonka, 2004). In these places, the provision of accessible public transportation is often poor, while private alternatives (e.g. taxis, own car) may be too costly. At the same time, due to poor infrastructure, the nearest health facility may be located several hours walk away, leaving journeys from home without transportation difficult, if not impossible, for many (Vergunst, Swartz, Mji, MacLachlan, & Mannan, 2015). An additional complication is that many people with disabilities also require someone to accompany them to visit services, which can incur extra transportation costs and limit the period of time during which travel can be undertaken (Mavuso & Maharaj, 2015). These issues may pose particular challenges when people with disabilities require emergency care (Vergunst et al., 2015) and may deter them from maintaining healthy behaviours in general (e.g. replenishing contraceptive supplies; Mavuso & Maharaj, 2015). Although difficulty travelling to health services is a barrier most common within low-income countries, it is present in high-income countries also, notably within rural settings (Daley et al., 2011; Iezzoni et al., 2006). Moreover, in both low- and high-income countries, travel to sexual health services can be obstructed by historical conflicts and inequalities that continue to trouble the contemporary spaces that people with disabilities inhabit. For instance, in Northern Ireland, where the vast majority of the population have strong ties to Protestantism or Catholicism, people with disabilities may be reluctant to attend services located in areas perceived as belonging to members of the other group (Anderson & Kitchin, 2000). A second example is South Africa, where many people with disabilities live in areas where infrastructure is poor due to historical policies under Apartheid, which left some areas of the country underdeveloped (Emmett & Alant, 2006; Vergunst et al., 2015).

Many people with disabilities face structural/environmental barriers to accessing sexual and reproductive health care at the facilities themselves. Studies conducted in low-income countries suggest that health care centres are frequently inaccessible for those with physical disabilities, for example, lacking entry ramps or readily adjustable equipment, such as disability-friendly beds (Ahumuza, Matova, Ddamulira, & Muhanguzi, 2014; Mavuso & Maharaj, 2015; Tanabe, Nagujjah, Rimel, Bukania, & Krause, 2015; Smith et al., 2004). Moreover, there are often long waiting times at facilities, which can be very tiring for people with physical disabilities and cause problems coordinating journeys home (Mavuso & Maharaj, 2015; Tanabe et al., 2015; Vergunst et al., 2015). Research has also identified environmental barriers at facilities in high-income countries (National Academy of Medicine, 2007; Nosek & Howland, 1997; Nosek & Simmons, 2007; Shakespeare, Gillespe-Sells, & Davies, 1996), though some have suggested their presence is accentuated or ameliorated depending on the type of disability that service users have. For instance, a survey of 34 family planning clinics in Northern Ireland revealed that approximately 75 per cent were deemed accessible to people with physical disabilities (Anderson & Kitchen, 2000). However, the survey also revealed that the same services were rarely accessible for people with sensory disabilities. Less than half of clinics contained tactile or large print instructional signs for use by people with visual impairments and only four possessed minicom systems for use by people with hearing difficulties. Furthermore, Anderson and Kitchin (2000) observed that of the four family planning clinics that provided minicom systems, two did so within public areas. This means that in these clinics the rights of other service users to discuss sexual health matters privately are not extended to people with sensory disabilities. A similar issue to this can also arise in low-income countries and is particularly common within displaced (i.e. refugee) communities, which tend to host individuals from several nations. In these settings, people with disabilities may have difficulty communicating their exact needs to providers while utilising health care services, because there may be no interpreters available (Tanabe et al., 2015).

The above examples should illustrate why health care facilities must critically question whether they provide equal or equitable services to people with disabilities and how some individuals may be excluded if they do not adopt an equitable provision model. Equitable health care dictates a needs-based approach to service provision, emphasising individual health requirements and dignity rather than equal health care, which merely implies equal opportunity to utilise services (Eide et al., 2015; MacLachlan et al., 2011). On this point, recall that access to the highest standard of sexual and reproductive health care is a human right (WHO, 2006). Therefore, the onus is on health facilities to provide equitable services, even in settings with limited resources (La-Rosa-Salas & Tricas-Saurus, 2008).

The structural/environmental barriers that people with disabilities encounter when accessing sexual and reproductive health services intersect with attitudinal barriers. For instance, health care professionals often subscribe to the widespread myth that people with disabilities are asexual and not in need of sexual health care (Becker, Stuifbergen, & Tinkle, 1997; Groce et al., 2013; Rohleder et al., 2009; Valvano et al., 2014; Wolfe, 1997), which can lead to them being excluded or discouraged from accessing vital services such as STD treatments (Mavuso & Maharaj, 2015; Welner, 1999). This may be a particular barrier for people with learning or psychosocial disabilities who experience especially negative attitudes when discussing their sexual health needs with professionals (Collins, 2001, 2006; Parchomiuk, 2012; Rohleder & Swartz, 2009; Wolfe, 1997). Studies also indicate that health care professionals receive little training in how to discuss sexual health matters with disabled clients and may feel uncomfortable broaching some topics with them (Akinci, 2011; Akinci, Yildiz, & Zengin, 2011; Kazukauskas & Lam, 2009, 2010; Valvano et al., 2014).

It has been suggested that negative attitudes toward sexuality and disability are global in their scope (Milligan & Neufeldt, 2001; Nario-Redmond, 2010) and that the sexuality of people with congenital disabilities is shaped early on in life by dealing with sexual stigmatisation from family members, peers and the wider community (Di Giulio, 2003; McKenzie, 2013; McKenzie & Swartz, 2011). This stigmatisation has consequent implications for access to sexual and reproductive health care in adulthood, for example rendering people with disabilities afraid to ask for help in accessing services from staff at facilities, or from people within the community (Mavuso & Maharaj, 2015). When looking at the intersection of disability and culture (see Chapter 3) other barriers arise. Within some communities, problematic attitudes to disability and sexuality are further complicated by the presence of cultural beliefs that disadvantage certain groups of people with disabilities from accessing health care (Chappell, 2016; Chappell, Rule, Dlamini, & Nkala, 2014; Peta, McKenzie, & Kathard, 2015; Wazikili, Mpofu, & Devlieger, 2006, 2009). For example, in traditional Zulu cosmology in South Africa, disability can be viewed as a curse from God, which leads to the direct exclusion of people with disabilities in Zulu communities from accessing sexual health services (Hanass-Hancock, 2009). Moreover, according to traditional Zulu beliefs, sex with a person who has a disability is counted as a blessing for them or as a purification ritual if they are virgins (Hanass-Hancock, 2009). This encourages the sexual abuse of people with disabilities, particularly women, which can bypass the effectiveness of sexual health services by, for example, increasing vulnerabilities to STDs (Groce & Trasi, 2004; Kvam & Braathen, 2008; Rohleder et al., 2009). Similarly, Zulu and other traditional communities may adhere to the beliefs that it is taboo to discuss sexual matters, including sexual health care, especially across generational lines (Chappell, 2016; Wazakili et al., 2009). These silences may contribute to hidden discourses about sex emerging among youths with (and without) disabilities (Chappell, 2016), which may encourage risky sexual behaviours rather than the safe practices that would be reinforced by accessing sexual health services.

Within the literature, more data is generally needed to discern the attitudes that non-disabled people hold toward the provision of sexual health care for people with disabilities. Studies from high-income countries have instead mostly focused on general attitudes toward disability and sexuality (e.g. the attractiveness of people with disabilities; Man, Rojahn, Chrosniak, & Sanford, 2006; Marini, Chan, Feist, & Flores-Torres, 2011; Marini, Wang, Etzbach, & Del Castillo, 2012) or compared the sexual attitudes and experiences of people with and without disabilities (e.g. Brunnberg, Bostrom, & Berglund, 2009; Cheausuwantavee, 2002; McCabe & Taleporous, 2003; Taleporous & McCabe, 2002). With the exception of some aspects of reproductive health care (see discussion on disability and motherhood, below), it is not clear how non-disabled people view sexual health care for people with disabilities. In this connection, Hunt et al. (2017) recently conducted the first large-scale survey assessment of the attitudes of non-disabled South Africans toward disability, sexuality and access to sexual health care. Our data suggest that people with disabilities are viewed as less capable of expressing sexuality and as benefitting less from both sexual health services than the general population.

We have already discussed how restricted access to health care can be understood as part of a larger cycle between ill-health and poverty (Wagstaff, 2002), and how poverty interconnects to the various other barriers to health care (e.g. accessing transport) that people, including those with disabilities, confront (Braathen et al., 2013, 2016; Grut et al., 2012; Ingstad et al., 2012). Barriers to accessing sexual and reproductive health care may be particularly exacerbated by poverty in countries where people with (and without) disabilities utilise services within privatised health care systems. In these settings, individuals may not be able to afford the cost of treatments as well as any health insurance to pre-emptively cover or reduce medical costs in the event of ill-health (Gibson & O"Connor, 2010; Iezzoni et al., 2006; Nosek & Simmons, 2007). Moreover, many countries have adopted systems that are ostensibly free at the point of care, but in reality are rife with hidden financial expenses. For instance, Smith et al. (2004) note that reproductive health care is supposedly free of charge in Zambia, but many items of equipment (e.g. drugs, umbilical clamps) needed for treatments are billed to the patient and may be too costly for most women with disabilities to afford. Within sub-Saharan Africa in general, poverty and how it affects the ability of people with disabilities to access sexual and reproductive health care is of the utmost concern in the context of the global HIV epidemic. You will recall from our discussion in Chapter 6 that people with disabilities are vulnerable to HIV infection. Given that people with disabilities are also more likely than people without disabilities to be poor (WHO and World Bank, 2011), they are therefore particularly at risk of not being able to afford the costs associated with HIV treatments (De Beaudrap, Mac-Seing, & Pasquier, 2014; Groce et al., 2013; Hanass-Hancock, 2009; Rohleder et al., 2009). Moreover, just as barriers to accessing health care are shaped by poverty, the extant inequalities that certain groups of people with disabilities face also magnify their likelihood of living in poverty. For instance, the costs associated with health care services such as HIV treatments may further perpetuate poverty, through income loss (Rajaraman, Russel, & Heymann, 2006). Disability may also intersect with other multiple disadvantaged categories (e.g. gender, culture) and poverty to shape access to sexual and reproductive health services (see case example below). Within high-income countries, an example of this is the gender pay gap, where women have been found to earn consistently lower incomes than men (World Economic Forum, 2015). Women with disabilities are thus more likely to live in poverty than are both women without disabilities and men with disabilities (Emmett & Alant, 2006). In terms of sexual and reproductive health care, this means that women with disabilities may more frequently experience financial cost as a barrier to accessing services. In the next section, we discuss the specific barriers that women with disabilities face when accessing sexual and reproductive health care in the context of pregnancy and motherhood.

Case example: intersecting disadvantages to accessing HIV services in Malawi

Braathen and colleagues (2016) recently conducted a case study of access to sexual health services in the context of disability and HIV within a Malawian household. This case study can be regarded as illustrative of the intersecting disadvantages to accessing sexual health care that certain people with disabilities face.

The case study is about Naphiri (pseudonym), a 33-year-old woman living in a poor, rural Malawian village. Her household consists of her mother, father, Naphiri's own 11-year-old daughter, her sister and her sister's two children. The family farm food for sustenance, have a small business selling banana fritters and receive some financial aid from Naphiri's brothers who live abroad. Naphiri is living with HIV and paralysis in her right hand and leg, both of which she acquired approximately four years ago.

When Naphiri first became ill, her mother spoke of not understanding what was happening, thinking: "She was bewitched or was attacked by evil spirits" (p. 5). The family had to hire a vehicle to take her to hospital, where the family discovered Naphiri was HIV-positive. They have decided not to disclose Naphiri's status to the wider community on the advice of one of her brothers who feared stigmatisation. Due to her illness, Naphiri's mother initially had to take her to the nearest health care facility, located about three hours walk away from their house. In that time, Naphiri's mother could not contribute to the household chores. Now, the family hire a bike when Naphiri needs to go to the facility, but the family cannot always afford it because it is so expensive. Additionally, Naphiri can no longer make a large contribution to the household, as she is unable to complete household chores.

The barriers (i.e. cost, transportation) that Naphiri experiences when accessing HIV services can be understood as shaped by disability, gender, culture and poverty. Within households such as Naphiri's, it is common for male members of the family to make financial contributions as well as the important decisions about care. We see an example of the latter when Naphiri's brother requests that her HIV status is not disclosed. Conversely, women in rural Malawian households usually carry out the day-to-day practical chores, such as cooking. Naphiri's illness thus impacts the household and its ability to make ends meet, as within communal African cultures, members of the family unit are interdependent on one another. As Naphiri is now ill, other members of her household, like her mother, are therefore tasked with taking over her duties. Naphiri's disability has therefore detrimentally affected the household finances, through both the loss of her ability to contribute to the family and the extra expense of her care. This lack of income presents a barrier when Naphiri needs to access HIV treatment, because the family often cannot afford to hire transport and must find alternative solutions. Naphiri's situation also has a continuing negative effect on her immediate household and even on the other family members that reside elsewhere, which will likely perpetuate the inequalities they face (e.g. poverty).

Naphiri's case is one example of how barriers to accessing sexual and reproductive health care are shaped by a myriad of factors, like disability, gender, culture and poverty. While some of these factors can accrue to systematically disadvantage people with disabilities from accessing care, their intersection also produces distinct and individualised experiences that differ on a case-by-case basis (Emmett & Alant, 2006). We therefore encourage you to think of Naphiri's situation as an illustrative, but not a prescriptive, example.

Disability and motherhood

Although the majority of women become mothers and most women consider having children an important part of their identity, women with disabilities have faced a constant struggle for motherhood (Prilleltensky, 2003). Much of this struggle has been against oppressive policies and practices (e.g. involuntary sterilisation) enacted in order to limit the reproductive control of women with disabilities, though environmental/structural and attitudinal barriers as well as health-related limitations caused by impairments also play a role.

Various writers have highlighted that women with disabilities are doubly disadvantaged, because they experience discrimination on the basis of both their disability and gender (e.g. Fairchild, 2002; Hanna & Rogovsky, 1991; Moodley & Graham, 2015; Sheldon, 2014). This disadvantage is accentuated in developing countries, where especially little is known about the lives of women with disabilities (Emmett & Alant, 2006; Peta et al., 2015). Tilley (1998) points out that while early disability studies research adopted a "gender-blind" approach to investigating the lives of people with disabilities, feminist movements did not explore issues of importance to women with disabilities either (see also Chapter 3). These patterns of neglect led to the reproductive health care needs of women with disabilities being seen largely as a medical concern (Rembis, 2010; Shakespeare, 1998), bar a small group of writers that explicitly discussed their reproductive rights (e.g. Finger, 1992; Morris, 1991) and motherhood experiences (e.g. O" Toole & Doe, 2002; Thomas, 1997). Waxman (1994) equates the historical lack of interest in this area with the societal perception that women with disabilities posed a eugenic threat. She characterises the paucity of the early disability literature to explore vital areas of motherhood, like pregnancy rates, as representative of the importance placed on controlling the reproductive health of women with disabilities, at the expense of promoting and protecting it.

The most obvious way in which this reproductive control has been exercised is through policies of involuntary sterilisation, which were enacted in many countries during the early to mid-twentieth century, including the USA (Park & Radford, 1998), and much of Europe (Tilley, Walmsley, Earle, & Atkinson, 2012). Some countries have pursued such policies well into the latter half of the twentieth century (e.g. South Africa's Abortion and Sterilisation Act 1975; Holness, 2013). Although some people with psychosocial disabilities have been forced to undergo sterilisation, the primary aim of these policies was to prevent those with intellectual disabilities from outnumbering "normal" members of society. For example, the majority of the 60,000 people sterilised in Sweden between 1935 and 1976 were women (and men) with intellectual disabilities (Park & Radford, 1998). During this period, popular support for involuntary sterilisation was grounded in the misguided notions that intellectual disabilities were likely to be passed on to offspring (Reilly, 2015) and that women with intellectual disabilities are hypersexual (Szollos & McCabe, 1995) and would have more children than was normal. After the 1970s the popularity of these eugenic arguments waned, and social justifications, such as the perceived lack of parenting fitness of those with intellectual disabilities, were instead used to reframe sterilisation as a way of liberating women with intellectual disabilities (Tilley et al., 2012). For instance, in the USA, this period saw cases where courts were petitioned to sterilise women with intellectual disabilities under their fundamental right to birth control (Reilly, 2015).

There is still much concern today regarding whether people with intellectual disabilities make good parents. For instance, research has shown that people hold more conservative attitudes toward the parenting capabilities of people with intellectual disabilities compared to other aspects of their sexuality (Brantlinger, 1992; Cuskelly & Bryde, 2004; Cuskelly & Gilmore, 2007; Gilmore & Chambers, 2010; Wolfe, 1997). In addition, there is continued support for sterilisation as a form of contraception for this group, particularly among both professionals and the parents of children with intellectual disabilities (Aunos & Feldman, 2002; Wolfe, 1997). However, although evidence indicates that having a parent who is intellectually disabled puts children at risk of things like poor nutrition or neglect, there is increasing recognition that these outcomes are not due solely to parental inadequacy but stem from other factors such as a lack of support or difficulty accessing health care services (Begley et al., 2009). It is also important to keep in mind that all women with disabilities have the same sexual and reproductive desires as women without disabilities, which may include the desire to become mothers (Milligan & Neufeldt, 2000). In this respect, first-person accounts from women with intellectual disabilities who were involuntarily sterilised suggest they feel distressed upon finding out they cannot have children, not liberated (Stefansdottir, 2014; Tilley et al., 2012). Yet, despite the harm that sterilisation can cause women with disabilities it still remains a widely used practice in some countries today. For instance, in some areas of Belgium, it has been observed that three times as many women with intellectual disabilities are sterilised than within the general population (Servais, Leach, Jacques, & Rossaux, 2004). In the future, it is likely that the debate around reproductive freedom and sterilisation will continue to evolve as new ethical concerns emerge (see case example below). In particular, Reilly (2015) suggests that as pre-screening for genetic defects during pregnancies becomes more advanced and increasingly popular within higher-income countries, the number of people born with intellectual disabilities could be vastly reduced without any state intervention.

Although it is primarily women with intellectual disabilities who have struggled against policies of involuntary sterilisation, all women with disabilities face subtle forms of reproductive control. In contrast to non-disabled women, among whom childfree individuals are stigmatised (Letherby, 2002), women with disabilities find that their desires for motherhood are discouraged by family, friends and members of the public (Earle & Church, 2004; Lipson & Rogers, 2000; Tilley, 1998; Thomas & Curtis, 1997). These negative attitudes frequently stem from stigma and misunderstandings about disability (O"Toole & Doe, 2002; Prilleltensky 2003, 2004). For instance, it may wrongly be assumed that a woman with a physical disability will not be competent enough to look after a child, or that pregnancy coupled with impairment will lead to adverse health effects for mother or offspring (Prilleltensky, 2003). Research has further indicated that health care professionals can reproduce these negative perceptions and consequently offer inadequate or incorrect counsel due to prejudice or a lack of knowledge about disability (Nosek, Howland, Rintala et al., 2001; Pebdani, Johnson, & Amtmann, 2014). For example, immediately after confirmation of pregnancy, some women with physical disabilities have reported being offered termination of their pregnancy, as it is assumed the child is unwanted or unsuitable (Smeltzer, 2007). Many women also report feeling pressurised to agree to the supplementary prenatal testing that is frequently recommended by health care professionals (Piotrowski & Snell, 2007). This advice, even if well meant, causes women with disabilities particular discomfort because such testing implicitly reflects eugenic concerns (i.e. the desire to eliminate persons with disabilities; Scott, 2005). Given the negative attitudes that pregnant women with disabilities must overcome on a day-to-day basis it is unsurprising that many feel conflicted over their desire to become mothers and may experience low levels of maternal confidence as a result (Malacrida, 2009; Prilleltensky, 2003, 2004; Smeltzer, 2007).

Problematically, the attitudinal barriers that expectant women with disabilities encounter when accessing reproductive health care also intersect with the structural/environmental ones that we discussed in the previous section. For example, a woman with a physical disability may have difficulty locating suitable transportation to health care centres as well as difficulty accessing buildings and their services (Anderson & Kitchin, 2000; Smeltzer, 2007). Visits to health care centres may also be complicated by the presence of equipment that is not readily adjustable, such as examination tables and medical instruments (Pebdani et al., 2014; Thomas & Curtis, 1997). Paradoxically, this means that although the needs of pregnant women with disabilities are often greater than expectant women without disabilities (e.g. in terms of antenatal education and postpartum support), women with disabilities are physically excluded more frequently from vital aspects of reproductive health care. It has been suggested that this is because women with disabilities are not expected to use services like family planning clinics (Anderson & Kitchen, 2000). However, you will recall from the last section that the goal of facilities should be to provide equitable health care, or care according to the needs of users, no matter how great these are (Eide et al., 2015). In some low- and middle-income countries, it is more likely that these needs will be extensive. For instance, in sub-Saharan Africa, where rates of HIV infection are high, pregnant women are more likely to experience complications with carrying to full term due to HIV (McIntyre, 2003). Another example comes from a study conducted in Malawi by Braathen and Kvam (2008). They found that a common practice within some communities was for (non-disabled) men to marry women with disabilities and abandon them once pregnant, leaving these expectant mothers with less support through which to access reproductive health services.

Pregnant women with disabilities, especially physical disabilities, also must deal with possible complications presented by their impairment. The likelihood of these complications occurring is dependent on type and severity of disability. For example, women with spinal cord injuries are more at risk of hysterectomies (Nosek, Howland, Rintala et al., 2001) and may experience physical problems during pregnancy, labour and the postpartum period, such as urinary tract infections (Charlifue, Gerhart, Menter, Whiteneck, & Manley, 1992). Conversely, women with some other disabilities, such as multiple sclerosis, may experience little added risk (Houtchens, 2007). However, it is frequently unclear to women with disabilities whether their impairment may affect pregnancy (Nosek, Howland, Rintala et al., 2001). As this worry often goes unaddressed because many health care professionals lack detailed knowledge about specific impairments (Pebdani et al., 2014), this is an example of how environmental/structural barriers can intersect with health-related limitations to deny expectant women of the quality of reproductive care offered to non-disabled women. Notwithstanding these barriers, the pregnancies of many women with disabilities do go smoothly (e.g. Baker, Stuifbergen, & Tinkle, 1997; Charlifue et al., 1992). One comparative survey of women with and without physical disabilities found no significant differences in the rate of miscarriages or stillbirths (Nosek, Howland, Rintala et al., 2001), and another estimated that there was not a significant difference between the pregnancy rates of disabled and non-disabled women (Iezzoni, Yu, Wint, Smeltzer & Ecker, 2013). As such, although the barriers that women with disabilities encounter mean that the process of becoming a parent can be very difficult, many are able to successfully pursue their desire and right to motherhood.

Case example: a recent example of forced sterilisation within the UK

In February 2015, a High Court judge in the UK ruled that a woman with a learning disability, DD, who was a mother of six children, could be involuntarily sterilised (Dyer, 2015). In light of what we have read about sterilisation in this chapter, particularly its links to eugenics, reproductive control and the distress it can cause to women, it may seem difficult to imagine how such a decision can be justified within society today. We will see if this is still the case when we have examined more details of the case, below.

The involuntary sterilisation of DD was deemed justifiable because she lacked the capacity to make this decision herself and any future pregnancy posed a life-threatening risk to both her and the child (Dyer, 2015). DD had experienced dangerous health complications with previous pregnancies and had a history of hiding pregnancies from social workers (Dyer, 2014). Furthermore, an intrauterine device (IUD; a long-acting reversal contraceptive inserted into the uterus) was not viewed as a viable alternative, due to DD's propensity to withhold information (e.g. the removal of the IUD). The judge ruling on the matters stated: "This case is not about eugenics. This outcome has been driven by the bleak. . . evidence that a further pregnancy would be a significantly life-threatening event for DD" (Dyer, 2015, p. 1). This example underlines the complex ethical debates that lie behind all contemporary decisions to involuntarily sterilise a person with a learning disability. In this example, the primary argument put forward to justify sterilisation was not eugenic, or social, but rather medical, pertaining to the preservation of DD's physical health as well as that of her future child. However, remember that while societies no longer forcibly sterilise people with learning disabilities for eugenic reasons, the practice of involuntary sterilisation is always eugenic, as it constitutes a form of reproductive control. Therefore, the greatest possible care needs to be taken when deciding whether it is justifiable to forcibly sterilise a person with a learning disability, even in extreme circumstances. You will likely have your own opinion concerning whether DD's own set of circumstances justify the loss of her reproductive rights in this case.

Concluding comments

We will close this chapter by noting that although people with disabilities face many barriers when accessing sexual and reproductive health care, these barriers should not be thought of as insurmountable. The literature has identified some routes through which health care access can be improved, including implementing training programmes to increase the knowledge and comfort of health care professionals dealing with sexual issues (e.g. Booth, Kendall, Fronek, Miller, & Geraghty, 2003; Higgins et al. 2012; Post et al., 2008; Rueda et al., 2014), utilising different methods of delivering sexual and reproductive health information to people with disabilities (e.g. Christopherson, Moore, Foley, & Warren, 2006; Pendergrass, Nosek & Holcomb, 2001), provision of more reliable and accessible transport to health services (e.g. Iezzoni et al., 2006; Scheer, Kroll, Neri, & Beatty, 2003) and shaping the physical environment to improve access to buildings and services (e.g. McKay-Moffat, 2007). However, there are some limitations to the current work. Some of these objectives, notably the creation of accessible health care facilities and the modification of existing inaccessible ones, are best pursued at the policy level (Begley et al., 2009). The literature is also noticeably silent on strategies that could be used to change negative community attitudes towards disability and sexual and reproductive health care. This is likely due to the fact that there has been comparatively little research on the nature of these attitudes. There is also a paucity of studies testing methods of improving access to sexual health services among people with disabilities in low-income countries. This is especially concerning in light of the HIV epidemic affecting some poorer areas of the world and the central importance of sexual and reproductive health care to controlling it. Interventions tested in these settings will face difficult challenges, for instance how to be flexible and adaptable enough to maintain effectiveness among the poorest segments of these populations, where linguistic and cultural barriers may be accentuated. However, the provision of equitable health care for people with disabilities is a pressing need that will not be achieved without extending the scope of current research to these areas. On this note, we will pick up on some ideas for inclusive research and practice in general in the next chapter.


CHAPTER 8

INCLUSIVE PRACTICE

In the previous chapters we have considered the various barriers for people with disabilities to be able to live lives that are fully sexual and sexually healthy. As stated in the introduction, this book has tended towards taking a more "risk" or "vulnerability" focus, highlighting exclusion. In this final concluding chapter, we focus on inclusion. It is important to state that we are academics/researchers, not practitioners, so we can only provide a constrained discussion and make some tentative suggestions, based on our own research experience and the literature, rather than actual experiences of teaching sexual health or providing sexual and reproductive health care services. In relation to promoting inclusive sexual and reproductive health care services for people with disabilities, the World Health Organization (2009) recommends five points of action: (1) to promote research on disability and sexual and reproductive health; (2) increase awareness within health care organisations about the unmet needs of people with disabilities; (3) design sexual and reproductive health care services that are accessible to people with disabilities; (4) develop project programmes in partnership with persons with disabilities themselves; and (5) address the sexual and reproductive health care needs of people with disabilities at national policy level.

With some of these guidelines in mind, this chapter offers a brief consideration of how research can be made more inclusive, by discussing the principles of participatory research, using our own research project as an example. The chapter then covers some considerations for making practice (legal, teaching, health care) more inclusive focusing on four key aspects: addressing structural and environmental barriers; addressing attitudinal barriers; working collaboratively; and training of professionals. This chapter is by no means comprehensive. It is intended only as a concluding chapter to consider, given the issues and barriers that exist, how we might move forward.

Taking a critical perspective on disability and sexual health

Critical approaches to health have much to offer work on disability and sexual health. More traditional health approaches would look at sexual health from the perspective of sexually transmitted diseases and unsafe sexual health behaviours, for example, such as using a condom. A lot of health research and interventions have relied on established health behaviour models such as the Health Belief Model (Rosenstock, 1974), Theory of Reasoned Action (Ajzen & Fishbein, 1980), or the Theory of Planned Behaviour (Ajzen, 1991), to name just three of the most popular. These models would be utilised to promote pro-sexual health behaviours through providing individuals with the information that enable individuals to make informed choices, and change their attitudes in a way that motivates them to make behaviour changes. We are over-simplifying here somewhat, but the important point to be made is that these models focus predominantly on the role of individual cognitions, attitudes and behaviour. Critical scholars critique the absence of any consideration as to context and structural realities that shape the sexual health experience and behaviour of individuals (e.g. Campbell, 2003; see also Rohleder, 2012). The relevance for people with disabilities and sexual health is clear. Of course, individual factors are important, and what determines sexual health more broadly includes individual attitudes and behaviours. However, as we have articulated in previous chapters, much of what shapes the sexuality and sexual health experiences of people with disabilities are the exercises of power inequalities, and the various structural and social barriers that oppress and exclude people with disabilities. As the social model of disability and the biopsychosocial model of disability suggest, the context is key (see Chapter 2). Thus, to address the sexual health of persons with disabilities, we need to primarily consider the context.

Critical approaches to health are particularly interested in the issue of power and social injustice. Individuals and their health cannot be understood in isolation from their social, cultural and political contexts (Chamberlain & Murray, 2009; Murray & Campbell, 2003). A key approach from a critical perspective to health is research and practice that is action-orientated, seeking social change, rather than behaviour change.

Hepworth (2006) is also critical of the disciplinary boundaries that often exist in dominant health professions, which tends to perpetuate theories that dominate our thinking. Instead, she advocates for a pluralist, critical approach to health. This is a useful stance for disability and sexual health. As we have pointed out at certain points in this book, disability has mostly been absent from sexuality research, and sexuality has mostly been absent from disability studies. Medical concerns have tended to dominate sexual health research. What is needed is a pluralist and inter-disciplinary approach, which benefits from different perspectives, rather than dominant theories and positions. Thus, in thinking about some ideas for "inclusive practice", we hold in mind these basic principles.

Including a consideration of disability in sexual health research

Research on disability and sexuality is generally lacking. Some areas of research have received more attention than others, for example research on sexual functioning and acquired disabilities, or the disabling effects of HIV and AIDS. However, for the most part, the sexual lives and sexual health of persons with disabilities remains an under-researched area. Furthermore, as mentioned earlier in the book, much of the research has been conducted in higher-income countries such as the UK and the USA. With most of the world's people with disabilities living in low- and middle-income countries, it is clear that much remains unknown about the actual lived realities of the majority of people with disabilities.

While the literature on disability and sexuality from low- and middle-income countries remains sparse overall, the available research has identified several key issues that operate within these contexts, such as HIV (e.g. Groce et al., 2013), and extended investigation to uniquely vulnerable populations, such as refugees with disabilities (e.g. Tanabe et al., 2015) and residents of leper colonies (Enwereji & Enwereji, 2008). Such concerns are of the utmost importance and many people with (and without) disabilities stand to benefit from what is an increasingly global exchange of ideas on disability and sexual health. However, work from low- and middle-income countries need not always take a risk or vulnerability approach. Researchers working in such contexts should also conduct research designed to advance our general empirical understanding of disability and sexuality. For example, there is currently a dearth in understanding of how to change the negative constructions of disabled sexuality prevalent in societies worldwide. Consequently, there is a need to develop interventions that facilitate attitudinal change among people with and without disabilities. There is no reason why such strategies cannot be developed through research in low- and middle-income contexts and applied in high-income contexts, rather than vice versa.

One of the reasons why disability may have been excluded from much of the mainstream sexual health research could be that epidemiological researchers, and other quantitative researchers may be unsure as to how to include and identify people with disabilities in their studies. Researchers new to disability studies may feel that there are too many complexities and that persons with disabilities represent a very varied large group. They would, of course, be correct, but we should make sure not to attempt to include disability because it is "too difficult". Any good attempt at making a start to include disabilities when exploring sexual health matters would be useful.

Epidemiological studies and health studies that utilise statistics would typically include instruments that claim to measure phenomena. While we adopt a predominantly critical perspective in this book, we do recognise the usefulness of epidemiological and statistical studies, many of which we have referred to in this book, which highlight prevalence rates, for example. It helps to have a picture of what the concerns are, before being able to critically engage with understanding the causes and thinking about what to do about it. For us, the fact that many epidemiological sexual health studies have not included people with disabilities is a problem. But how can we include a "measure" of disability? As Chapter 2 showed, the definition of "disability" is contested, and in part depends on the ontological and epistemological frameworks that researchers decide to adopt. A useful tool for quantitative researchers may be found in a set of questions developed by the Washington Group on Disability Statistics (they have a useful website with various resources here: www.washingtongroup-disability.com/). The questions were developed using the ICF as a model (see Chapter 2), and so adopts a biopsychosocial understanding of disability by considering impairment as well as functioning and participation. It thus takes the social model of disability into account, by not only considering whether a person identifies as having a disability only in terms of impairment categories or severity of impairment, but also in terms of whether they experience social exclusion. There are a set of six short questions that are easily understood and easy to include in a census or survey in most contexts and cultures. By including questions such as these in survey and epidemiological studies, we can begin to make some meaningful comparisons between disabled and non-disabled populations with regards prevalence of sexually transmitted diseases and other sexual health behaviours, for example. While such questions provide an important general measure, it is equally important that we conduct research that looks in more detail at specific disabilities and different intersecting identities. For example, as shown in Chapter 3, we know very little about the experience of LGBT persons with disabilities.

Making research more inclusive

For those embarking on researching disabilities, it is important to stress that research should ideally be participatory. One of the key mottos of the disability rights movement and of disabled people's organisations is "nothing about us, without us", which is meant to challenge the previously prevailing forms of research that involved studies on people with disabilities; experiments, interventions or observations conducted on people with disabilities as objects of study. Rather, the motto points to the principles of doing research (or other activities or interventions) with people with disabilities. The emphasis, therefore, is very much on participation. This is in line with the social model of disability (see Chapter 2), developed by the disability movement itself. As Goodley and Lawthom (2005) state, a key conception of research in this model is that of "working alongside the primary sources of knowing" (p. 136): in this case, the members of the (disability) community themselves.

Participation, of course, can mean a number of things. Kagan and colleagues (2011) refer to varying stances of participation ranging from sharing information, to consulting on issues, to deciding together on action steps, to acting together, to supporting independent community initiatives (p. 107). They map out the levels of participation along two axes: passive participation.proactive participation and low commitment.high commitment. Thus, where people with disabilities participate merely as members of an advisory board, this would be considered a low level of participation, with minimal commitment; as opposed to persons with disabilities acting as equal partners and co-researchers, which would be considered a high level of participation (Orford, 2008; Kagan et al., 2011). Sadly, so much of research and development of services is conducted with low participation of persons with disabilities, with token consultations being the most practised form. This may be arguably considered as the most practical and efficient way of facilitating participation, and is certainly better than no participation, but it does not echo the full value and principles of the motto "nothing about us, without us". So how can this be achieved?
Participatory action research is a useful approach. It is beyond the scope of this chapter to provide a full discussion of participatory action research as a method. Interested readers could see Vaughan (2015), or Chevalier & Buckles (2013). However, as discussed above, what is fundamental to this approach is conducting research in partnership with what would otherwise be considered the "research subjects". The process is that of a collaborative enquiry with the people affected by the issues that are being studied, with the aim of bringing about change (Vaughan, 2015). This facilitates research that produces findings that can be used to effect change, or that the research activities themselves are transformative.

As an illustration of what is meant, we outline below the approach we used on a research project we are currently conducting on disability and sexuality in South Africa (this project was also mentioned briefly in Chapter 3). By no means do we want to state that this is an excellent example of how things should be done; rather, we refer to it as an example because it is most familiar to us, and because we can describe the thinking behind processes.

Case example: participatory action research on disability and sexuality in South Africa

At the time of writing this book, the three of us are working with other colleagues (see Chapter 3) on a funded research project exploring the social understandings on disability and sexuality in South Africa, and the lived experiences of people with physical disabilities themselves with regards dating, relationships, sexuality and sexual and reproductive health. We focused specifically on physical disabilities only, partly for practical reasons (maintaining a specific focus) and also as a type of obvious and visible disability (as opposed to hidden or less visible disability).

The research team included non-disabled people and people with disabilities, including the director general of a prominent regional disabled people's organisation (DPO . an organisation run by and for people with disabilities). All members of the team participated equally in developing and designing the core research and dissemination activities through regular team meeting discussions. In this way we could combine different perspectives as both "outsiders" and "insiders". As a core team, we designed and implemented the study in ways that maximised further participation of people with disabilities. We recruited 14 people with physical disabilities to act as both co-researchers and participants on the project. Although they were involved as the research participants (being interviewed to explore their lived experiences), they also participated in the various research activities. The research team and all participants got together for a planning workshop to discuss and generate ideas for the development of a social attitudes survey. Together we thought of what the survey should ask about and how; who should be asked to respond; and how it should be advertised and disseminated. Based on these discussions, a survey questionnaire was developed by the research team, and piloted with the 14 participants for further input and comment. In this way we could take in to consideration issues of concern for people with disabilities themselves and the sorts of everyday social prejudices and stereotypical views and constructions that they encounter and how we could capture these views. This perspective could be combined with the perspective of the core research team, and their concerns about research rigour, validity and reliability.

We used Photovoice (Wang & Burris, 1997) as a technique for generating qualitative data. Photovoice is a participatory research technique in which participants are trained as co-researchers and photographers. Participants are asked to take photographs that represent their everyday experience, and are then invited to provide narrative discussion in relation to illustrative images (Vaughan, 2015). The 14 participants were each provided with digital cameras and were invited to use them to take photographs that represent or are symbolic of their experiences. They were also invited to use other media, such as drawing, poetry and other written material. These materials were used as both visual data and as stimuli to elicit personal narratives during an individual interview. While the interview had a broad focus, the use of Photovoice allowed the interviewee to set his or her own interview agenda. One of the participants did not take part in the interview due to a change in his circumstances, but he did participate in all the earlier activities.

We also collaborated on the production of a short documentary film and a website (www.disabilityandsexualityproject.com) that shows the materials produced and the film, available also in subtitles for viewers with hearing disabilities. In addition to the various academic publications (some of which are still to come), the research team and participants are collaborating in producing a book on the topic for a lay audience, using the visual and other materials produced by the 13 individuals who were interviewed, and their personal narratives. The non-academic outputs were co-developed and are intended to be used as educational materials to raise awareness among the general population. In this way, participants took some ownership of the data produced and how this would be used. We consider this to be an example of research utilising a high level of commitment, where persons with disabilities are fully involved in all aspects of the project, including design, data generation, analysis and dissemination.

Making practice more inclusive

In this section we offer some ideas about inclusive practice when it comes to challenging myths, and providing sexual health education, legal services for sexual abuse and sexual and reproductive health care.

Addressing structural and environmental barriers

When it comes to sexual health, one of the key issues identified is the limited access to sexual health education and sexual and reproductive health care services for people with disabilities as compared to non-disabled persons (see Chapters 4 and 7). An obvious and important issue to address here are the structural and environmental barriers to equitable access. This goes to the heart of the social model of disability, which argues that "disability" is the result of an environment (and society) that excludes people with impairments, because it is built predominantly in the interests of non-impaired people (see Chapter 2). Here we are talking about the practical aspects like making premises accessible to people with mobility impairments (e.g. ramps for wheelchair users), making information available to people with sensory impairments (e.g. information available in Braille or providing sign language interpretation), making information available using language or visual aids that are accessible to people with learning or cognitive difficulties. Alternative formats and tools for delivering information are needed. For example, for people with visual impairments, sex education may require the use of palpable diagrams and tactile models (Krupa & Esmail, 2010). For the use of such explicit tactile models, guardian consent should probably be sought (Kapperman & Kelly, 2013). Kapperman and Kelly (2013) provide some useful practical suggestions for providing sex education for young people with visual disabilities, particularly if they are included in classrooms with non-disabled peers, this may involve some individual "pre-teaching" on sensitive or more abstract concepts, so as to avoid undue embarrassment when being taught in a group.

Critical research also has a valuable contribution to make in thinking about how messages are framed. For example, Deborah Chinn (2013) provided a fascinating analysis of visual health information leaflets meant for persons with learning disabilities. She utilised visual discourse analysis to show that while the leaflets were aiming to empower service users with learning disabilities, they tended to rather express the concerns and preoccupations of the health care service providers. For example, the pictures depicted service users with disabilities receiving treatment with instructions directed as compulsory messages about what should be done, rather than depicting service users making choices or asking questions. She also found how the leaflets included a lot of images and instructions that directed service users" behaviour, depicting the visit to the hospital as a smooth interaction, and so giving messages about how service users should behave as a good patient. Finlay and colleagues" (2015) use of conversation analysis to illustrate barriers to understanding in the way sex education messages are framed for people with learning disabilities is another example (see case example in Chapter 4 for a discussion of this study).

Addressing these barriers is not without its complications, and does require careful consideration. For example, the use of sign-language interpreters (as with use of any language interpreter) for deaf patients at sexual health clinics raises obvious ethical issues around confidentiality. It is not unusual in less-resourced settings for public health care professionals to rely on family members of deaf patients to provide sign language interpretation, which adds a further layer of ethical complexity.

Addressing attitudinal barriers

Attitudinal barriers are present at a social level and also service provision level. We will consider the service provisional level below; first we consider the broader social level.

Above, we have discussed possible ways in which sexual health education could be made accessible to persons with disabilities. This has been considered mostly in terms of providing sexual health education specifically tailored to persons with disabilities. For instance, when Wazakili and colleagues (2009) ran focus groups discussing the provision of HIV education programmes with 16 adolescents who had disabilities, some participants expressed the desire to be taught by other people with disabilities, with whom they felt most comfortable. Others instead saw the need for programmes that tackle other barriers in the lives of youth with disabilities (e.g. to employment, community participation), and thus decrease sexual risk behaviour by offering the same societal opportunities that non-disabled people receive. A number of specific interventions to deliver sex education or elicit better communication about sexual topics among people with disabilities have also been tested and include, for example, utilisation of an educational board game (Van der Stege, Van Staa, Hilberink, & Visser, 2010), or the provision of web-based classes (Pendergrass, Nosek & Holcomb, 2001).

Although offering disability-specific content can be valuable, as Krupa and Esmail (2010) very usefully suggest, disability and sexuality could be included in all sex education programmes. This would facilitate the education of non-disabled persons about disability, and thus may challenge myths and misconceptions, as well as make sex education relevant to persons with disabilities taking part in integrated classes. The authors note that the message that should be imparted by educators is that, like non-disabled people, those with disabilities are also sexual beings. An approach that stresses similarities and not differences may also make sense in terms of HIV education programmes. Some participants in Wazikili et al.'s (2009) study favoured this approach toward their education, noting that there was no difference in the way that HIV affects people with and without disabilities.

People with disabilities exposed to negative attitudes about their sexuality or reproductive capabilities may experience deleterious outcomes, such as low sexual self-esteem or poor body image (Nguyen, Liamputtong, & Monfries, 2016). Given the widespread nature of such constructions worldwide, societal-level interventions offer the best opportunity for changing dominant social constructions about disability and sexuality. One example of this may be through supporting national and international disability organisations that work closely to offer people with disabilities the same opportunities for sexual fulfilment as non-disabled people. You may recall from Chapter 3, for example, that the organisation TLC Trust in the UK promotes sex work with disabled clients, reasoning that such services may be the only route in which some individuals with severe impairments are able to express their sexuality comfortably (Owens, 2013). An affiliated UK organisation, Outsiders (see www.outsiders.org.uk/outsidersclub/), also runs dating events and services for people with disabilities and helps facilitate workshops that build confidence around sexuality. At the policy level, engagement with such organisations as part of routine service provision could be implemented where feasible.

Generally speaking, more research is needed to understand what shapes the prevalent negative constructions about disability and sexuality in society and how to address them. In this respect, we can offer a preliminary suggestion. Media representations of people with disabilities reflect, but may also have the power to direct social attitudes (Milligan & Neufeldt, 2001). For instance, an explicit aim of the 2012 Paralympics, held in the UK, was to improve disability attitudes, and there is some evidence that positive media portrayals of disabled athletes were able to do so (e.g. Ferrara, Burns, & Mills, 2015). Similarly, attention should be paid to the practice of how disability and sexuality is depicted in TV and film. That is, positive constructions that focus on people with disabilities as sexual and erotic beings may be effective at confronting such prejudices, while denigrating constructions that frame people with disabilities as asexual may worsen them. Hebl and Kleck (2000) note that media-based interventions have the advantage of being far-reaching, compared to strategies involving, for example, face to face interactions between people with and without disabilities. Moreover, they have the potential to shift attitudes among both groups. That is, people with disabilities may also benefit from exposure to sexual role models; individuals with disabilities who are confident about sex and their bodies on screen. Such portrayals may ultimately be able to alter ways that people with disabilities think and feel about themselves.

Practice that is collaborative and participatory

As with research on disability and sexual health, sexual health-related services would benefit from the participation and collaboration of people with disabilities. This would ensure that practices and services are designed to meet the needs of people with disabilities as identified and defined by them themselves, rather than based on assumptions held by non-disabled people. For example, in Chapter 3 we considered some assumptions held about what are areas of sexual health concern for men and women with disabilities. There are disabled people's organisations (DPOs) worldwide that would be important organisations to work with. These are organisations run by and for people with disabilities, rather than organisations run by non-disabled people supporting people with disabilities. Disabled Peoples" International (http://dpi.org/index.html) is a global body with regional affiliations, and this might be a good place to start identifying relevant DPOs. The participation of people with disabilities is a practice more common in some areas than in others. For example, with psychosocial disabilities, the involvement of service user groups in mental health services has been increasingly recognised as being important (e.g. Thornicroft & Tansella, 2005). Although, as discussed with regards to participation in research, the same issue about degrees of participation pertain here (see above). Participation can all too often be tokenistic, ticking off a box, rather than real involvement in collaboratively developing services that address the unmet needs and concerns as experienced by people with disabilities themselves. Of course, this is by no means an easy and smooth task, with different agendas, priorities and practicalities always at play. The funders of such services may also set very powerful agendas and practical requirements that impose constraints on what can be collaboratively developed.

Training professionals

The training of professionals dealing with matters of disability and sexuality is essential. This pertains to both professionals and carers working with people with disabilities, often feeling unskilled in dealing with matters of sexuality, as well as sexual and reproductive health professionals untrained in working with patients who have a disability. This applies to the range of issues involved. For example, in Chapter 4 we noted the anxieties of educators in providing sex education to young people with disabilities. In inclusive education classrooms, training would be needed in how to include topics related to disability. In Chapter 5 we looked at the sexual abuse and exploitation of persons with disabilities. One issue that has been highlighted, are the barriers to accessing psycho-legal services for persons with disability, many of which are attitudinal barriers, and rest on assumptions about the validity and reliability of the testimony of people with disabilities in court. As discussed in Chapter 5, many cases of sexual assault, abuse and rape of persons with disabilities generally go unreported, and few cases reach conviction. Persons with learning disabilities in particular are often not able to receive proper legal protection for these reasons (Pillay & Sargent, 2000). However, with adequate training, this can be changed. For example, in South Africa, Dickman and Roux (2005) found that after court staff had received specialist training on issues of disability and abuse, the rates of conviction in sexual assault cases where the complainant had a learning disability became comparable to rates of conviction in the general population.

Kendall and colleagues (2003) have developed a conceptual framework of the training needs of professionals and the means to identify them, through a set of questions known as the Knowledge, Comfort, Approach and Attitudes Towards Sexuality Scale. Use of this measure has revealed that professionals often have limited knowledge, experience discomfort and hold negative attitudes when dealing with disability and sexual health matters (Kendall, Booth, Fronek, Miller, & Geraghty, 2003). Moreover, the prevalence of these factors can vary across different health disciplines (e.g. Booth, Kendall, Fronek, Miller, & Geraghty, 2003). To offer effective training notwithstanding this variation, Fronek and colleagues (2005, 2011) suggest that training about disability and sexuality should be provided to professionals at the interdisciplinary level. They argue that such training has several benefits. First, it is effective at addressing the unique training needs that different rehabilitation professionals require to deal competently with matters of disability and sexuality. As such, interdisciplinary training supports a "consumer-" driven approach, which encourages staff to identify their training needs. Second, it recognises that different professions require different levels of knowledge, comfort and skills. Therefore, interdisciplinary training also reflects the holistic nature of the many rehabilitative teams. Fronek et al. (2005, 2011) have found that use of such training is effective at developing skills among a range of professionals that persist over time.

Concluding comments

We have only touched on inclusive practices in this chapter, providing you the reader with some ideas and places to start. As highlighted in the various chapters of this book, there is so much that needs to be done. Tackling the unmet sexual and reproductive health needs of people with disabilities requires both targeted approaches and the development of more inclusive general approaches (e.g. targeted sex education for people with disabilities as well as inclusive general sex education). The bigger task, however, remains dismantling the oppressive and exclusionary assumptions, constructions, attitudes and behaviours at a societal and policy level. At the heart of this is the notion of citizenship . of belonging and inclusion.

Weeks (1998) developed the concept of the "sexual citizen" in relation to LGBT identities, where "sexual citizenship" is about making a claim about belonging by bringing the private (sexuality) into the public as a political issue. Shakespeare (2000) extends this to the sexuality of people with disability, outlining three dimensions in the process of sexual citizenship also relevant to disability. He states: 

First, is a demand for control: we demand control over our bodies, over our feelings, and over our relationships. Second, is a demand for access: we demand access to representations, relationships, and public spaces. Third, is a demand for choice: we demand choices about identities, our lifestyles, our gender experiences.

(Shakespeare, 2000, p. 165)

What we have aimed to highlight in this book, is that despite some welcome progress and social discussion about disability and sexuality, this remains lacking and scattered to only certain parts of the world. For the most part, people with disabilities, globally, remain excluded, and we have a very long way to go for people with disabilities to enjoy equal control, access and choice with regard to their sexuality and sexual health rights.

The End


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Authors:
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Poul Rohleder is a clinical psychologist and reader at the University of East London, whose research interests cover psychosocial aspects of health, sexual health and disability studies.
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Stine Hellum Braathen is a research manager at SINTEF Technology and Society, Department of Health Research, in Norway. For more than a decade she has done research and published extensively in the area of disability and sexual health.
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Mark T. Carew is a Research Fellow at the Leonard Cheshire Research Centre, based at University College London. His experience and research interests lie in tackling problematic issues and barriers that affect people with disabilities globally, including exclusion from sexual health.

Disability and Sexual Health: A Critical Exploration of Key Issues  (Critical Approaches to Health): Rohleder, Poul, Hellum Braathen, Stine,  Carew, Mark: 9781138123717: Amazon.com: Books
DISABILITY AND SEXUAL HEALTH
A Critical Exploration of Key Issues
authors: Poul Rohleder, Stine Hellum Braathen and Mark T. Carew
in The Routledge Critical Approaches to Health series
First published 2019 by Routledge
 

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6.Jul.2023
Maria José Alegre