Trans Women and HIV Social Psychological Perspectives

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 Acknowledgements

My research career has seen me explore aspects of identity, relation-

ships and psychological wellbeing in many minority groups in society.
Throughout all of these research projects, I have always been motivated
by the same things: my deep appreciation of diversity, which enriches
our society; my fascination with the functioning of social groups; and
my conviction that diversity must be supported so that minority groups
can thrive and flourish. Outgroups have a crucial role to play in enabling
minority groups to experience social and psychological wellbeing. It has
felt very rewarding to write this book about transgender women living
with HIV in the UK. The book begins to fill a gap that many of us in the
field of HIV have long lamented. I am immensely grateful to the eleven
trans women who generously shared their experiences with me. I thank
my Ph.D. students over the years whose ideas have inspired me. I would
like to express my deepest gratitude to Aedan J Wolton without whose
support this project would simply not have come to fruition. I am grateful
to Lauren Kennedy who was my research assistant on the EXTRA (Experi-
ences of Trans Women Living With HIV) Study and to Sue Hayward who
provided excellent administrative support. I thank my beloved family—
Ramesh, Asha, Babak and Jaya—for their unwavering support during the
writing of this and other books.

v
 Contents

Part I Trans Women in Context

1 Understanding Trans Women and HIV 3

2 The Construction of Trans Identity 25

3 HIV Stressors and Risk Factors 43

Part II Trans Women Living with HIV in the UK

4 Researching HIV and Trans Women 67

5 Multi-Layered Stigma 89

6 Self-Isolation and Identity Concealment 109

vii
viii CONTENTS

7 Sex Work and HIV 127

Part III Conclusion

8 Supporting Trans Women Living with HIV 147

Index 155
 List of Figures

Fig. 1.1 Number of HIV diagnoses by year in the United Kingdom

(2004–2018) 19
Fig. 2.1 Identity process theory (from Jaspal, 2018) 31
Fig. 3.1 The Health Adversity Risk Model (from Jaspal et al., 2018) 55

ix
 PART I

Trans Women in Context

 CHAPTER 1

Understanding Trans Women and HIV

Abstract In this introductory chapter, the social psychological focus of

the volume on the experiences, identities and psychological well-being of
trans women living with HIV in the UK is discussed. The key questions
addressed in this volume are described: (1) How do trans women living
with HIV experience their diagnosis and the ‘stressors’ associated with
the condition? (2) How do they perceive and manage HIV disclosure? (3)
How does the experience of living with HIV shape identity and psycho-
logical well-being among trans women? Two case studies are provided
to illustrate the psychological challenges among trans women living with
HIV in the UK. Key terms that are used in the volume are defined. A
brief history of trans women and a brief overview of key statistics on the
trans population and of HIV incidence in the UK are provided.

Keywords HIV · Trans women · Trans history · HIV epidemiology ·

Social psychology

The field of human immunodeficiency virus (HIV) has undergone signifi-

cant development since the first clinical observations of acquired immune
deficiency syndrome (AIDS) in 1981. HIV has gone from being an almost
invariably life-limiting disease to a life-changing chronic condition. Effec-
tive treatments have been developed, ensuring a very good prognosis for
those diagnosed and treated early. Both the efficacy and tolerability of

© The Author(s) 2020 3

R. Jaspal, Trans Women and HIV,
https://doi.org/10.1007/978-3-030-57545-8_1
4 R. JASPAL

treatments have improved considerably over the years. HIV testing is

widespread. More recently, unequivocal evidence has emerged showing
that patients on effective antiretroviral therapy (ART) who have an unde-
tectable HIV viral load cannot infect their sexual partners—popularly
referred to as ‘undetectable=untransmittable’ or ‘U=U’. With the advent
of pre-exposure prophylaxis (PrEP), an additional highly effective layer of
protection against the virus has emerged.
These impressive developments in HIV medicine have paved the way
for the ambitious aspiration, and genuine belief, that HIV can be elim-
inated. In 2014, the Joint United Nations Programme on HIV/AIDS
(UNAIDS) set the ambitious 90-90-90 target, that is, for 90% of people
living with HIV to be aware of their positive serostatus, for 90% of them
to be on effective treatment, and for 90% of patients with diagnosed HIV
to have an undetectable viral load. In 2018, it was confirmed that the
United Kingdom (UK) had surpassed these targets, achieving 92-98-97,
respectively (Public Health England, 2019). In 2019, Matt Hancock, the
UK Secretary of State for Health and Social Care, declared the UK’s
commitment to end all new HIV transmissions by 2030.1 Collectively,
medical innovation, institutional commitment, and public aspiration may
well make this commitment a reality. Yet, there remain at least two signif-
icant challenges to achieving this ambitious target, which constitute the
foci of this volume.
First, it is clear that, while HIV patients are increasingly enjoying better
physical health outcomes as a result of developments in HIV medicine,
the unabating insidious stigma that surrounds the virus continues to
cause psychological distress to those diagnosed and living with HIV.
What is the impact of an HIV diagnosis on the identity of the indi-
vidual? How does it affect their psychological well-being? How do HIV
patients in distress cope and, perhaps more importantly, how can they
be supported to cope effectively? These questions are important because
existing research suggests that people with decreased psychological well-
being are at greater risk of poor health outcomes (Jaspal & Lopes,
2020).
Second, not all groups in society experience HIV in quite the same
way. There is evidence of health inequalities in minority groups—along

1 https://www.gov.uk/government/news/health-secretary-announces-goal-to-end-hiv-
transmissions-by-2030.
 1 UNDERSTANDING TRANS WOMEN AND HIV 5

the usual fault lines of ethnicity, sexuality and gender. Trans women—
a key population in the HIV epidemic—face a major burden in relation
to HIV infection. Global data show that they are much more likely to
acquire HIV and that those who do are much less likely to be diagnosed
early, to receive and adhere to treatment, and to experience as good a
prognosis as patients from other groups in society (see Chapter 3). Trans
women experience many other social and psychological stressors which
can put them at disproportionately high risk of HIV but also of poorer
general health outcomes.
This book focuses on the experiences, identities and psychological well-
being of trans women living with HIV in the UK. It explores theory and
research into HIV among trans women, on the one hand, and examines
interview data from a sample of trans women living with HIV in the UK,
on the other hand. Three key questions lie at the heart of this volume:

• How do trans women living with HIV experience their diagnosis and
the ‘stressors’ associated with the condition?
• How do they perceive and manage HIV disclosure?
• How does the experience of living with HIV shape identity and
psychological wellbeing among trans women?

Case Studies
In order to illustrate the significance of these questions, two case studies
of trans women living with HIV are presented. The cases are real but
individuals’ names have been replaced by pseudonyms and some details
have been changed to prevent identification:

Case Study 1: Sally, a 51-Year-Old Trans Woman Living with HIV

Sally was assigned male sex at birth but, even as a child, felt like a girl.
She never attempted to explain these feelings to her family or friends because
she did not know how to and thought they wouldn’t understand. As an
adolescent, Sally felt attracted to boys and thought that she might be gay.
At the time, this was not socially acceptable but it felt more acceptable than
telling people that she felt like a girl. Sally was rejected by her parents and
bullied by her peers. She felt very lonely. At the age of 18, Sally left home and
decided to transition away from her family. She met her former partner Jim
6 R. JASPAL

with whom she started to use alcohol and recreational drugs. She became
involved in sex work so that they could maintain their lifestyle. During the
course of her work, Sally was violently assaulted several times. In the early
90s, Jim died of AIDS and that year Sally also tested positive for HIV.
This added a further layer of complexity to her already complex life. Given
that no HIV treatments were available at the time, Sally was told that
she would probably not survive for much longer. Desolate and bereft, she
confided in a friend who was sympathetic but concerned about catching HIV
through even casual contact with her. Sally managed to survive long enough
to receive HIV treatment when it was introduced in 1996. Although Sally is
in relatively good physical health, she still feels traumatised by her near-death
experience. She feels lonely and isolated and, given that she has never really
been supported by others, is mistrustful of others. This is further compounded
by the fact that she is often ridiculed by people in the street because she does
not pass as a cisgender woman.

Case Study 2: Pritika, a 25-Year-Old Trans Woman Living with HIV

Pritika was born in India and moved to London to study at university.
Pritika concealed from her parents the fact that she was trans because of
the stigma surrounding hijras 2 in India. When she started her univer-
sity education, Pritika joined the lesbian, gay, bisexual and trans (LGBT)
student society and befriended Jess, a trans woman, in whom she confided.
Jess shared with Pritika her own story of transitioning at the age of 18 and
provided her with support to begin her own gender transition. Away from
her parents in India, Pritika felt empowered to think seriously about tran-
sitioning. Pritika went to see her GP but soon became frustrated with her
GP’s response and the time the process was taking. Healthcare professionals
did not seem to believe what she was telling them and kept on asking her
if she was sure about her feelings. Dismayed at the medical response, she
purchased hormones online and began to self -medicate. After a few months,
she noticed some significant bodily changes which made her appearance feel
more aligned to her gender identity. Pritika also met her boyfriend on a
mobile social networking application and they developed a sexual relation-
ship, rarely using condoms. She was not particularly knowledgeable about the

2 Hijras are legally recognised as a third gender in various South Asian countries
(Agrawal, 1997). Some are intersex but most were assigned male sex at birth but identify
as hijra. Hijras can be regarded as trans.
 1 UNDERSTANDING TRANS WOMEN AND HIV 7

risk of HIV given that the topic was never really discussed in India. A few
months later, Pritika tested positive for HIV during a routine sexual health
screening organised at her university. Her test result was confirmed at the
local sexual health clinic and she was encouraged to begin HIV medication.
However, Pritika was nervous about beginning treatment because of what
she had heard about side effects and, especially, what the implications might
be for her gender transition. Pritika preferred to focus on her transition, felt
that her doctor was not understanding towards her and thus decided not to
return to the clinic. She also broke up with her boyfriend and felt unable
to tell him that she had HIV because she thought that he might blame her.
Pritika feels that she has nobody to speak to.

These case studies are not intended to be representative of trans women’s

experiences of living with HIV. Rather, they are supposed to be illustrative
of some of the challenges that may be faced by trans women who are
diagnosed with the condition. The case studies evoke issues of identity,
family relationships, social support, bullying, homophobia, transphobia,
violence, sex work, medical mistrust, perceived risk of drug interactions,
risk and several others. Many of these issues are discussed more extensively
in the rest of this volume. The case studies exhibit the complex lives of
trans women living with HIV who may be grappling not only with the
social psychological stressors associated with their gender identity but also
with those prompted by their HIV status.
The case studies are intended to show that some trans women are living
with HIV in precarious social and psychological circumstances, devoid of
essential social and clinical support. The reasons for decreased support are
multifarious—some trans women are rejected and victimised due to their
identity, while others pre-emptively opt for isolation in order to protect
themselves from stigma. Social and cultural context is key to predicting
how individuals will cope with adversity, such as an HIV diagnosis. While
Sally grew up during an era in which acknowledging her trans identity
was difficult, the culture in which Pritika was socialised was prohibitively
transphobic. In this volume, the experiences of trans women living with
HIV are explored through a social psychological lens. This is intended to
elucidate how social context and individual experience interact to produce
particular psychological and physical health outcomes for individuals in
this population.
8 R. JASPAL

Definitions
It is important to define what is meant by the key terms used in
this volume. Accordingly, the gender identity terms (such as trans and
cisgender), the notion of gender transitioning, identity, and psychological
wellbeing are defined. These terms are used differently in the literature
and, thus, require some commentary in the interest of clarity.

Gender Identity Terms

Many different terms are used to describe gender identity. In this volume,
the term ‘trans’ is used as an inclusive term which encompasses a series
of other more specific identities, such as ‘transgender’, ‘transsexual’, and
‘cross dresser’. It is used to refer to the social and psychological state of
non-alignment between the sex which one was assigned at birth and the
gender with which one identifies. Nicolazzo (2016) has conceptualised
the category trans as ‘an open question pointing toward the instability
of the assumed gender binary, recognizing trans∗ people as comprising a
community of difference’ (p. 16) and, thus, acknowledges the wide range
of gender identities that this broad category encompasses.
People who identify as trans undergo a gender ‘transition’ of some
sort. This may be physical in that a trans person may undergo hormone
replacement therapy in order to develop physical characteristics consis-
tent with the gender with which they identify. They may undergo gender
reassignment surgery (orchidectomy) and have a vaginoplasty (in the case
of female-to-male trans people). However, not all trans women decide to
undergo gender reassignment surgery—as indicated in this study, some
are happy to retain their masculine genitals while undergoing hormone
replacement therapy. Some of the trans women who participated in this
study had not undertaken a physical gender transition at all but had
transitioned psychologically in that they self-identified as trans women.
Furthermore, many had transitioned socially in that they also presented
as female in some or all social contexts. Some trans women who tran-
sition psychologically and/or socially have not undergone any physical
intervention as part of their gender transition. Some have no intention
or desire to do so. In this volume, the generic term ‘trans’ is used as an
umbrella category to capture all of these experiences, labels and identities.
The term ‘cisgender’ is used to refer to people whose gender iden-
tity is aligned with the sex assigned at birth. It is frequented used by
 1 UNDERSTANDING TRANS WOMEN AND HIV 9

trans people to refer to people who are ‘not trans’ (Pearce, 2018). It is
noteworthy that some trans people also define themselves as ‘non-binary’,
which acknowledges that it is not always possible to align one’s identity
to the binary categories of male and female (Matsuno & Budge, 2017).
Non-binary individuals identify as neither male nor female and, thus,
use a gender identity term which captures elements of both masculine
and feminine experience. This gender identity term has become increas-
ingly prevalent, with some individuals initially identifying binarily as trans
women or men but later adopting a non-binary identity. However, the
individuals who participated in this study identified (binarily) as trans
women and, consequently, the experiences of non-binary trans people are
not discussed or reported in this volume.

Gender Transitioning
There are many views on what ‘transitioning’ actually means. As demon-
strated below, the Gender Recognition Act 2004 stipulates that seven key
criteria must be met in order for a Gender Recognition Certificate to
be issued. These relatively strict criteria are perhaps the reason why only
4910 people in the UK have had their gender identity officially recog-
nised, despite the prediction that there are in fact hundreds of thousands
of trans people in the UK (LGBT Policy Team, 2018). Some individuals
have elected to have gender reassignment surgery—to varying degrees—
in order to transition, while others take the decision solely to initiate
hormone replacement theory. Some may do neither but ‘present’ as the
gender with which they identify—again to varying degrees.
Consistent with the social psychological perspective taken in this
volume, gender transitioning is understood as a social psychological
process, that is, as a state of gender dysphoria which is accompanied
by cognition, affect and behaviour to live in accordance with the gender
with which one identifies. How one ‘lives in accordance’ with this gender
is a fundamentally social psychological question. There are many social,
psychological, economic, institutional and other factors that determine
the measures taken in order to transition. They may have little, nothing
or everything to do with gender identity. For Pritika in case study above,
transitioning (in any visible manner) in India while living under the
watchful eyes of her parents was perceived to be impossible. For Sally,
gender reassignment surgery soon after her HIV diagnosis in the pre-ART
era was deemed to be medically risky. Yet, they are both trans women and
10 R. JASPAL

can both be said to have transitioned. We live in a world that consists of

social norms, which determine who is perceived to have and not to have
transitioned. It is important to view this social psychological issue from
the perspective of the individual himself/herself and not through the lens
of these social norms.

Identity
Identity can be defined in many ways depending on one’s disciplinary
approach. It can be thought of as an individual construct, that is, the
individual’s perception of who they are—a product of individual cogni-
tion and affect. It can also be conceptualised as a group membership,
that is, self-definition primarily as a member of a particular social group.
Furthermore, some scholars view identity as relatively stable, while others
conceptualise it as being in constant flux.
How we define identity also depends on our epistemological approach
(Jaspal & Breakwell, 2014). Social constructionists refer to identity as
being ‘constructed’ in discourse while realists tend to describe it as an
‘object’ that can be perceived, described and observed using the right
methods. There is merit in all of these approaches and they are not
necessarily incompatible. It would perhaps be a theoretical limitation
to focus on any specific approach to the detriment of others. Thus,
in accordance with the social psychological perspective taken in this
volume, identity is defined as the constellation of characteristics (person-
ality traits, group memberships, emotions, behaviours) which comprise
one’s self-perception, which are derived from one’s personal experience
and relationships with other people (Breakwell, 1986).
Identity is influenced by the social context but manifested in thought
and action. Society makes available the ‘resources’ for identity construc-
tion but the process of constructing identity is an interaction between
cognition, affect and society. As we enter and leave social groups and
as the social context evolves, our identity changes. Using the right
analytic approaches, we can describe, understand and predict identity
processes in any population. Consistent with identity process theory (see
Chapter 2), an analysis of how trans women living with HIV respond to
potential ‘threats’ to identity can shed light on the processes of identity
construction in this population.
 1 UNDERSTANDING TRANS WOMEN AND HIV 11

Psychological Wellbeing
The concept of psychological wellbeing is used to refer to a multitude
of distinct but inter-related phenomena. In this volume, it is defined as
the state of psychological equilibrium between the psychological stressors
that one faces, on the one hand, and the social psychological resources
that one possesses for dealing with these stressors, on the other hand
(Jaspal, 2018). As outlined in the rest of this volume, people regularly
face challenges (also thought of in terms of threats to identity), some of
which are relatively trivial and transient and others which are more serious
and chronic. In the context of HIV-positive trans women’s lives, stres-
sors may include misgendering, prejudice, an HIV diagnosis, and others.
They are described as stressors because they can cause psychological stress
and, thus, undermine one’s state of psychological wellbeing. This may
be described in terms of ‘feeling down’ or ‘sad’ or ‘anxious’ and so on.
However, as indicated in Chapter 2, individuals cope with these stres-
sors in a variety of ways—some adaptive and others maladaptive. There
are many factors—both social and psychological—which determine the
type of coping strategy that is available to the individual and employed by
them. These factors can either extend or limit the individual’s capacity to
cope with the stressors. The ability to select strategies for coping effec-
tively with challenges will in turn determine the extent to which the
individual experiences psychological wellbeing. Conversely, the inability
to cope effectively, due, for instance, to the absence of social support,
will shift the equilibrium in favour of the stressor, thereby undermining
psychological wellbeing. In short, psychological wellbeing is this ‘balance’
between psychological stress and coping.

The Role of Social Psychology

This book provides an analysis of the experiences of trans women living
with HIV through a social psychological lens. Social psychology is best
described as the meeting-point between psychology and sociology. If one
thinks of psychology specifically as the examination of cognition, affect
and behaviour in the individual and of sociology as the study of inter-
personal relationships, society and institutions, social psychology can be
located at the intersection of these two approaches (Jaspal & Breakwell,
2014).
12 R. JASPAL

More specifically, social psychology refers to the study of how indi-

vidual cognition, affect and behaviour are shaped by one’s (imagined
or actual) interpersonal relationships, society and institutions. There is a
long-standing tradition of social psychological research into the formation
of attitudes; the construction of identity, that is, how one views oneself in
relation to others; and the formation, operation and interaction of social
groups. As demonstrated in the case studies above and in the chapters that
follow, these issues are pertinent to the experiences of trans women living
with HIV. Trans women living with HIV are struggling to construct an
identity against a backdrop of culture, society and legal and healthcare
institutions. Their self-image is shaped at least in part by the perceptions
of others. Their attitudes towards HIV are affected by social stigma. The
coping strategies that they develop are rooted in both psychological and
social processes.
Social psychologists have examined these issues in a broad range of
empirical settings and populations, which has led to the development
of theories that may be generalised across populations. In Part I of this
volume, tenets of theories from social psychology are outlined in rela-
tion to the experiences of trans women living with HIV and, in Part II,
they are applied to the accounts of individuals living in the UK. In partic-
ular, identity process theory from social psychology lies at the heart of this
volume and its tenets are used flexibly to add theoretical depth to the anal-
ysis of trans women’s experiences of living, and coping, with HIV. The
theory lays the foundations for the theoretical model for understanding
and predicting responses to HIV in this population, which is outlined in
Chapter 3.

A Brief History of Trans Women in the Uk

The focus of this volume is on the experiences of trans women living with
HIV in the UK. In order to understand these experiences, it is impor-
tant to summarise briefly the history of trans women in the UK and,
in particular, the social, psychological and legal aspects of this history.
Several insightful texts have recently been published on this topic and
should be consulted for a more thorough overview (e.g. Burns, 2018;
Stryker, 2017). Although trans identity is often presented and understood
as ‘new’, trans people have in fact existed for a long time. Due to stigma,
decreased visibility, a lack of legal recognition, and slow medical advances
in the field of gender identity, trans people have remained invisible in