Disability and Sexual Health

A Critical Exploration of Key Issues

Poul Rohleder, Stine Hellum Braathen, Mark Thomas Carew, Mark Carew

• Publisher: Routledge
• Year: 2018
• Print ISBN: 9781138123717
• eBook ISBN: 9781317301745
• Edition: 1
• Topic: Psychology
• Subtopic: Applied Psychology
• Index: Psychology

The sexual lives of people with disabilities are rarely discussed. It is as if, because someone has a biological or psychological impairment, they do not exist as a sexual being. As such, many people with disabilities feel marginalised and powerless not only in their day-to-day lives, but also in their ability to form sexual relationships. A range of health issues are raised as a result.

Illustrated by research drawn from a range of international contexts, Disability and Sexual Health: A Critical Exploration of Key Issues is the first to examine this important but seldom acknowledged issue. Beginning with an understanding of how both disability and sexuality are socially defined phenomena, the book discusses the implications for the sexual health of people with disabilities, from sexual health education and access to information to STDs and possible sexual exploitation. The book concludes with a chapter recommending inclusive practice in line with the aims of the UN Convention on the Rights of People with Disabilities.

Disability and Sexual Health will be important reading for researchers and students in health psychology, critical psychology and the psychology of sexuality, gender, disability and nursing. It will also be of interest to professionals working with people with disabilities in health care and social work.

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-disabled’ 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 thi...

Table of contents

• Cover Page
• Disability and Sexual Health
• Critical Approaches to Health
• Title
• Copyright
• Contents
• Series Editor Preface
• Acknowledgements
• 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
• References
• Index