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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:
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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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ϟ
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Authors:
-
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. -
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.
-
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
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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