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 Physical Disability
and Sexuality
Stories from
South Africa
Copyright © 2021. Springer International Publishing AG. All rights reserved.

Edited by
Xanthe Hunt · Stine Hellum Braathen ·
Mussa Chiwaula · Mark T. Carew ·
Poul Rohleder · Leslie Swartz

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook Central,
 Physical Disability and Sexuality
Copyright © 2021. Springer International Publishing AG. All rights reserved.

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 Xanthe Hunt · Stine Hellum Braathen ·
Mussa Chiwaula · Mark T. Carew ·
Poul Rohleder · Leslie Swartz
Editors

Physical Disability
and Sexuality
Stories from South Africa
Copyright © 2021. Springer International Publishing AG. All rights reserved.

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 Editors

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Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 Editors
Xanthe Hunt Stine Hellum Braathen
Department of Psychology, Faculty of Department of Health Research
Arts and Social Sciences SINTEF Digital
Stellenbosch University Oslo, Norway
Stellenbosch, South Africa
Mark T. Carew
Mussa Chiwaula UCL International Disability
Southern African Federation of the Research Centre, Department of
Disabled Epidemiology and Public Health
Gaborone, Botswana University College London
London, UK
Poul Rohleder
Department of Psychosocial and Leslie Swartz
Psychoanalytic Studies Department of Psychology, Faculty of
University of Essex Arts and Social Sciences
Colchester, UK Stellenbosch University
Stellenbosch, South Africa
Copyright © 2021. Springer International Publishing AG. All rights reserved.

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 Acknowledgements

We were very fortunate that the project from which this book has been
developed, was very fruitful. The editors of this book, together and with
participants, published quite widely from the project. The project also
formed the basis of the first editor’s Ph.D. at Stellenbosch University in
South Africa.
As such, we would like to note the following:
Parts of the material in this publication are based on Xanthe Dawn
Hunt’s published Ph.D. Dissertation (2017) “Through a different lens:
Examining commonality and divergence in constructions and depictions
of the sexuality of people with physical disabilities in South Africa”.
Copyright © 2021. Springer International Publishing AG. All rights reserved.

(online reference number 10019.1/104824).

Stellenbosch University is the copyright holder of the original thesis, the
research for which was undertaken at Stellenbosch University. Permission
has been granted by Stellenbosch University, to the author, to use sections
of the original thesis for this publication.
We would also like to note that this study was supported by the Univer-
sity of Essex, the University of Stellenbosch, and the University of East
London, as well as the Southern African Federation of the Disabled, the
South African National Research Foundation, and SINTEF in Norway.
Below, the reader will find an exhaustive list of the other publications
drawn from this project, updated on the day upon which this manuscript
was submitted to the publisher. We have been at pains not to repeat our
past points in too much detail: the goal of this book is to provide a

vii

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 viii ACKNOWLEDGEMENTS

knowledge synthesis and account of participant life experiences (previ-

ously unpublished) which is written simply and clearly, and in a form
which is not too obviously academic.
As such, it is unlikely there will be much overlap in terms of our
theoretical contributions to the literature below. However, in order to
do justice to the participant narratives which form the backbone of this
book, we do cover project content, some of which has been the subject
of in-depth exploration elsewhere. Where relevant, reference is made to
our other publications. We have also sought permissions to reuse certain
content (including previously published quotes) from past publishers, and
we are grateful to them for allowing us to share this work further.

References
Carew, M. T., Braathen, S. H., Hunt, X., Swartz, L., & Rohleder, P. (2019).
Predictors of negative beliefs toward the sexual rights and sexual healthcare of
people with physical disabilities in South Africa. Disability and Rehabilitation.
Hunt, X., Braathen, S. H., Swartz, L., Carew, M., & Rohleder, P. (2017). Inti-
macy, intercourse, and adjustments: Experiences of sexual life of a group of
people with physical disabilities in South Africa. Journal of Health Psychology.
Hunt, X., Carew, M., Braathen, S. H., Swartz, L. Chiwaula, M., & Rohleder, P.
(2017). The sexual and reproductive rights and benefit derived from sexual
and reproductive health services of people with physical disabilities in South
Africa: Beliefs of non-disabled people. Reproductive Health Matters.
Hunt, X., Carew, M., Swartz, L., Braathen, S. H., & Rohleder, P. (2018).
Copyright © 2021. Springer International Publishing AG. All rights reserved.

Withdrawn, strong, kind, but de-gendered: Non-disabled South Africans’

stereotypes concerning persons with physical disabilities. Disability & Society.
Hunt, X., Swartz, L., Braathen, S. H., Carew, M., & Rohleder, P. (2018).
Shooting back and (re)framing: Challenging dominant representations of the
disabled body in the global South. In P. Chappell & M. de Beer (Eds.), Diverse
voices of disabled sexualities in the Global South. Palgrave.
Hunt, X., Swartz, L., Braathen, S. H., Jordan, C., & Rohleder, P. (in press).
(Re)presenting the self: Reflections on a photovoice project with people with
physical disabilities in South Africa. Disability & Society.
Hunt, X., Swartz, L., Carew, M., Braathen, S. H., & Rohleder, P. (2017). Dating
persons with physical disabilities: The perceptions of South Africans without
disabilities. Culture, Health & Sexuality.
Rohleder, P., Braathen, S., Hunt, X., Carew, M., & Swartz, L. (2018). Sexu-
ality erased, questioned, and explored: The experiences of South Africans with
physical disabilities. Psychology & Sexuality.

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 ACKNOWLEDGEMENTS ix

Rohelder, P. Carew, M., Braathen, S., Chiwaula, M., Hunt, X., & Swartz, L.
(2018). Creative collaboration on a disability and sexuality participatory action
research project: A reflective diary account. Qualitative Research in Psychology.
Copyright © 2021. Springer International Publishing AG. All rights reserved.

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 Introduction

All of the terms in the glossary, are contested. Debates about language
are central to the politics of both sexuality and disability. In this very brief
glossary, we define certain terms which we use in the book, according
to how they are used in the book. However, almost all of the words
below are the subject of disciplines and sub-disciplines, literatures, and
disagreement, all beyond the scope of this brief section, and so the reader
is encouraged to read further for a more comprehensive account of each
term.

Sexuality
Copyright © 2021. Springer International Publishing AG. All rights reserved.

Sexuality refers, most broadly, to the quality of being sexual. It encom-

passes biological, erotic, emotional, and social feelings, and behaviours,
and the manner in which people make sense of these. Sexuality, like many
broad terms, is variously defined, its meaning depending greatly on the
context in which it is used (Hunt, 2018). Trieschmann (1988) defines
sexuality as “the expression of a sex drive, through sex acts, within the
context of the personal identity of the individual: the maleness and female-
ness of the individual that is so heavily influenced by past cultural learning,
one’s self-image, and the expectations that others have of the person”
(p. 159). This definition is of utility, as it makes central the importance
of the person–environment interaction in sexuality and acknowledges the

xi

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 xii INTRODUCTION

role of culture, others, and self-image in determining an individual’s sexu-

ality (Hunt, 2018). However, Trieschmann’s (1988) definition of sexu-
ality does give primacy to sex acts, and so is usefully buttressed by the
World Health Organisation’s (2006) broader, and more inclusive, defi-
nition of sexuality as “a central aspect of being human throughout life
[which] encompasses gender identities and roles, sexual orientation, eroti-
cism, pleasure, intimacy and reproduction … influenced by the interac-
tion of biological, psychological, social, economic, political, cultural, legal,
historical, religious and spiritual factors” (World Health Organisation,
2006). This definition places less emphasis on heteronormative perfor-
mances of gender and sexuality through sex acts, instead emphasising the
numerous intersecting factors which influence an individual’s conception
of themselves as a sexual being and their behaviour in relation to sexual
thinking and feeling.

Cisgender
The term cisgender refers to people who possess the reproductive organs
and other biological sex characteristics associated with the gender (the
social identity of man or woman) that they were assigned at birth
(Aultman, 2014). The term cisgender came about due to a need to
trouble the association between the identifiers man and woman, and the
“natural” categories of sex. Cisgender people, as opposed to transgender
people, have a gender identity which corresponds to their birth sex. By
Copyright © 2021. Springer International Publishing AG. All rights reserved.

using the word cisgender as a prefix to man and woman, the term implic-
itly makes room to normalise the prefix transgender, for men and woman,
severing the assumption that these identifiers can stand alone and denote
a non-transgender identity (Aultman, 2014).

Transgender
Transgender people have a gender identity or gender expression that
differs from the sex to which they were assigned at birth (Stryker &
Whittle, 2006). This includes people whose gender identity is the opposite
of their assigned sex (people who are referred to has trans men and trans
women). However, transgender is also used as a term to reference people
who do not identify as only feminine or masculine; including people who
are non-binary (Richards et al., 2016).

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 INTRODUCTION xiii

Heterosexual
A simple definition of heterosexual will be used in this book, which is:
people who are sexually attracted to people of the opposite gender. So,
we mean, anyone who identifies as a man, who is attracted to people who
identify as women, and anyone who identifies as a woman, who is attracted
to people who identify as men (Association, 2008).

Lgbtq+
LGBTQ+ stands for lesbian, gay, bisexual, transgender, and queer/
questioning (Griffith et al., 2017). There are various forms of this
initialism, some of which entail more letters (denoting a broader array
of sexual identities and orientations) or fewer letters (denoting an abbre-
viation of the full gender, sexual orientation and sexual identity spec-
trum). Commonly, LGBTQ+ is used to refer both to reference all topics
pertaining to minority sexuality and gender identities, as well as to people
who identify as any one of the identifications encompassed under the
LGBTQ+ umbrella.

Gender
Where the term sex is often used to denote the genital and biolog-
ical differences between birth-assigned maleness or femaleness, gender
denotes either of the two sexes (male and female), but with particular
Copyright © 2021. Springer International Publishing AG. All rights reserved.

reference to the social. So, gender refers to the socially and culturally
constructed differences between people of the category male and people
of the category female, rather than biological differences (Oakley, 2016).
There is a range of gender identities beyond man and woman, including
non-binary people, Fa’afafine, Hijras, and Two-Spirit people. The term
gender is also used more broadly to denote a range of identities that do
not correspond to established ideas of male and female (Oakley, 2016).

Femininity
In this book, we use femininity to denote qualities or attributes regarded
as characteristic of people who identify as women.

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 xiv INTRODUCTION

Masculinity
In this book, we use masculinity to refer to qualities or attributes regarded
as characteristic of people who identify as men

Physical disability
In discussing physical disability, we adopt, most broadly, the operational
definition of the United Kingdom’s National Equality Act (Government
of the United Kingdom, 2010); “a physical impairment that has a substan-
tial and long term adverse effect on the person’s ability to perform normal
day to day activities e.g., walking, eating, going shopping” (p. 4). When
we invited people to participate in the photovoice piece of the study
upon which this book is based, we used this definition to help people
self-identify as eligible. When we conducted a survey on attitudes to
the sexuality of people with physical disabilities, we also used this defi-
nition. Despite the necessity of such an operational definition, there is
also a need to think, briefly, about two broader ways of thinking about
physical disability, both of which underlie this book. Firstly, consistent
with the social model of disability, we align ourselves with the distinc-
tion between disability and impairment (Hahn, 1988; Shakespeare, 2006;
Thomas, 2004). Impairment is a form of biological or physical difference,
defined medically. Disability, on the other hand, is the social sequelae
of inhabiting a world “designed” for people without impairments, when
one has an impairment (the functional limitations one encounters when
Copyright © 2021. Springer International Publishing AG. All rights reserved.

navigating a disabling social and physical environment) (Hahn, 1988). As

Sherry (2007) notes, “the rationale for this heuristic distinction is to sepa-
rate the experience of biological difference from the prejudice, discrimi-
nation and other negative social consequences that many disabled people
experience” (p. 10). However, there is also a need to recognise disability
as a social identity. To acknowledge that people with physical disabilities
may identify as members of a heterogeneous group, who have certain
experiences, both social and physical in common, is important in the
present book. This draws attention to the social and personal dimensions
of physical disability, which may be felt by people with physical disabil-
ities, over and above experiences engendered by the interaction of their
impairment with the broader social world.

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 INTRODUCTION xv

Photovoice
Photovoice is a participatory action research method which uses photog-
raphy as a means by which to gather data about a given topic with a group
of research participants (hereafter, co-researchers) (Wang & Burris, 1997).
During the course of a given research project, photovoice co-researchers
use their cameras to record aspects of their daily lives relevant to the
research question. During reflective sessions, led by the investigators, the
co-researchers may use their photographs as a springboard from which to
discuss and reflect on their daily lives and their experiences (Lal, Jarus, &
Suto, 2012). This method of research allows not only for co-researchers
to create, and share, their own visualised realities, but involves research
“subjects” in the process of photography (Wang, 2003).
Photovoice puts co-researchers in charge of the representation of their
own circumstances, and prompts them to “act as recorders and potential
catalysts for change in their own communities” (Wang & Burris, 1997).
Photovoice allows for the generation of knowledge which is closely
centred on the experiences of individuals and their interactions with
the environment (Letts, 2003). Given the above-outlined importance
of thinking about the environment when thinking about disability,
this feature of the methodology was particularly appealing. Taking
photographs is an activity which allows the creator to look both inward
(thinking about what image they want to capture and what it will mean)
and outward (being inspired by the environment to think about experi-
ence), and, in a project which is concerned with the interaction between
Copyright © 2021. Springer International Publishing AG. All rights reserved.

inner and outer forces in determining lived experience, we selected

photovoice as an appropriate methodology for exploring the experiences
of sexuality of a group of people with physical disabilities.
A distinction must be drawn here between photovoice as defined
and outlined by Caroline Wang and Burris (1997), and photovoice-type
methods, such as those employed in the project upon which this book
is based. Caroline Wang and Burris (1997) developed photovoice as a
replicable, clearly defined, participatory action research tool. According
to these authors, proper photovoice work entails several steps (for a clear
summary, see Wang & Burris, 1997). However, prior to, and since, the
work of these researchers, other photovoice-type research methodologies
have been developed and employed across a number of contexts (Clark,
1999; Moletsane et al., 2007; Zecevic, Magalhaes, Madady, Halligan, &
Reeves, 2010). These projects have in common the use of participant

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 xvi INTRODUCTION

photography as a means of generating data. Yet, they vary greatly in

their fidelity to the methodology outlined by Wang and Burris (1997).
These deviations are often motivated either by constraints of the prac-
tical context (i.e. not having regular contact with the research team when
transport costs are prohibitive), or ethical concerns in a given population
(i.e. not using group work where there are privacy concerns).
The methods employed in the project upon which this book is based,
will be outlined in due course.

Participants
We use the term participants in this book to describe people with physical
disabilities who were recruited into the photovoice arm of the study on
which this text is based. Although these individuals are also authors of
chapters and narratives, when they are discussed in relation to the data
which they generated during the project, we use the term participants. We
use the term co-researchers when we discuss the academic contributions
which some of the participants in the study in question, made to this
book.

References
American Psychological Association. (2008). Sexual orientation and homo-
sexuality. Retrieved from https://web.archive.org/web/20130808032050/
Copyright © 2021. Springer International Publishing AG. All rights reserved.

http://www.apa.org/helpcenter/sexual-orientation.aspx.
Aultman, B. (2014). Cisgender. TSQ: Transgender Studies Quarterly, 1(1–2), 61–
62.
Clark, C. D. (1999). The autodriven interview: A photographic viewfinder into
children’s experience. Visual Studies, 14(1), 39–50.
Government of the United Kingdom. (2010). Equality Act 2010. Available:
https://www.legislation.gov.uk/ukpga/2010/15.
Griffith, C., Akers, W., Dispenza, F., Luke, M., Farmer, L. B., Watson, J. C., …
Goodrich, K. M. (2017). Standards of care for research with participants who
identify as LGBTQ+. Journal of LGBT Issues in Counseling, 11(4), 212–229.
Hahn, H. (1988). The politics of physical differences: Disability and discrimina-
tion. Journal of Social Issues, 44(1), 39–47.
Hunt, X. (2018). Through a different lens: Examining commonality and diver-
gence in constructions and depictions of the sexuality of persons with physical
disabilities in South Africa (PhD Dissertation). South Africa: Stellenbosch
University.

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
 INTRODUCTION xvii

Lal, S., Jarus, T., & Suto, M. J. (2012). A scoping review of the photovoice
method: Implications for occupational therapy research. Canadian Journal of
Occupational Therapy, 79(3), 181–190.
Letts, L. (2003). Occupational therapy and participatory research: A partnership
worth pursuing. The American Journal of Occupational Therapy, 57 (1), 77–
87.
Moletsane, R., de Lange, N., Mitchell, C., Stuart, J., Buthelezi, T., & Taylor,
M. (2007). Photo-voice as a tool for analysis and activism in response to HIV
and AIDS stigmatisation in a rural KwaZulu-Natal school. Journal of Child
and Adolescent Mental Health, 19(1), 19–28.
Oakley, A. (2016). Sex, gender and society. Abingdon: Routledge.
Richards, C., Bouman, W. P., Seal, L., Barker, M. J., Nieder, T. O., & T’Sjoen,
G. (2016). Non-binary or genderqueer genders. International Review of
Psychiatry, 28(1), 95–102.
Shakespeare, T. (2006). The social model of disability. The Disability Studies
Reader, 2, 197–204.
Sherry, M. (2007). Definitions of disability and postcolonialism. Wagadu, 4, 10–
22.
Stryker, S., & Whittle, S. (2006). The transgender studies reader (Vol. 1). New
York: Taylor & Francis.
Thomas, C. (2004). Disability and impairment. In J. Swain, S. French, C.
Barnes, & C. Thomas (Eds.), Disabling barriers-Enabling environments,
Second Edition. London: Sage.
Wang, C. (2003). Using photovoice as a participatory assessment and issue selec-
tion tool. Community Based Participatory Research for Health, 1, 179–196.
Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and
Copyright © 2021. Springer International Publishing AG. All rights reserved.

use for participatory needs assessment. Health Education & Behavior, 24(3),
369–387.
World Health Organization. (2006). Defining sexual health. Retrieved
from http://www.who.int/reproductivehealth/topics/sexual_health/sh_def
initions/en/.
Zecevic, A., Magalhaes, L., Madady, M., Halligan, M., & Reeves, A. (2010).
Happy and healthy only if occupied? Perceptions of health sciences students
on occupation in later life. Australian Occupational Therapy Journal, 57 (1),
17–23.

Physical Disability and Sexuality : Stories from South Africa, Springer International Publishing AG, 2021. ProQuest Ebook
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