Tuberculosis, staring, love and loneliness: Flavia’s story

Abstract

This photo essay emanates from research conducted in 2017 that focused on the life histories of transgender sex workers in Cape Town who have had tuberculosis (TB). The aim was to capture the experiences of the disease from an anthropological perspective and to respond to a lack of scholarship on LGBT+ bodies in relation to TB. The research resulted in an ethnography that embraces the everyday alongside TB to showcase the complexity of the participants’ lives. In this photo essay, we — Pieter (researcher), Siv (photographer) and Flavia (research participant) — use photography to discuss the experience we had when Flavia talked about her experience with TB — discussions that ended up not being about TB at all. What Pieter and Siv had imagined would be a story of suffering became a story of negotiation and reclamation — one that is important for the social science research canon on the lived social experiences of TB, especially as it is portrayed through the lens of someone who identifies as a transgender sex worker in the South African context.

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Anthropology Southern Africa
ISSN: 2332-3256 (Print) 2332-3264 (Online) Journal homepage: http://www.tandfonline.com/loi/rasa20
Tuberculosis, staring, love and loneliness: Flavia’s
story
Pieter du Plessis, Siv Tshefu & Flavia Nazier
To cite this article: Pieter du Plessis, Siv Tshefu & Flavia Nazier (2018) Tuberculosis, staring, love
and loneliness: Flavia’s story, Anthropology Southern Africa, 41:4, 327-334
To link to this article: https://doi.org/10.1080/23323256.2018.1493391
Published online: 13 Dec 2018.
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Anthropology Southern Africa, 2018
Vol. 41, No. 4, 327–334, https://doi.org/10.1080/23323256.2018.1493391
© 2018 Anthropology Southern Africa
PHOTO ESSAY
Tuberculosis, staring, love and loneliness: Flavia’s story
Pieter du Plessis1* , Siv Tshefu1 and Flavia Nazier2
1Department of Social Anthropology, University of Cape Town, Cape Town, South Africa
2Research participant, Cape Town, South Africa
*Corresponding author. Email: dplpie006@myuct.ac.za
This photo essay emanates from research conducted in 2017 that focused on the life histories of
transgender sex workers in Cape Town who have had tuberculosis (TB). The aim was to capture
the experiences of the disease from an anthropological perspective and to respond to a lack of
scholarship on LGBT+ bodies in relation to TB. The research resulted in an ethnography that
embraces the everyday alongside TB to showcase the complexity of the participants’ lives. In
this photo essay, we — Pieter (researcher), Siv (photographer) and Flavia (research participant)
— use photography to discuss the experience we had when Flavia talked about her experience
with TB — discussions that ended up not being about TB at all. What Pieter and Siv had
imagined would be a story of suffering became a story of negotiation and reclamation — one
that is important for the social science research canon on the lived social experiences of TB,
especially as it is portrayed through the lens of someone who identifies as a transgender sex
worker in the South African context.
Este ensaio fotográfico emana de uma pesquisa realizada em 2017 que se concentrou nas
histórias de vida de profissionais do sexo transgêneros que tiveram tuberculose (TB), na
Cidade do Cabo. O objetivo foi capturar as experiências da doença a partir de uma perspectiva
antropológica e responder à carência de conhecimento sobre os corpos LGBT+ em relação à
tuberculose. A pesquisa resultou em uma etnografia que abrange o cotidiano ao lado da TB
para mostrar a complexidade da vida dos participantes. Neste ensaio fotográfico, nós — Pieter
(pesquisador), Siv (fotógrafo) e Flavia (participante da pesquisa) — usamos a fotografia para
discutir a experiência que tivemos quando Flavia falou sobre sua vivência com TB — discussões
que acabaram não sendo sobre TB de modo algum. O que havíamos imaginado que seria uma
história de sofrimento tornou-se uma história de negociação e reclamação — uma história que
é importante para os cânones da pesquisa em ciências sociais sobre as experiências sociais da
TB, especialmente quando elas são retratadas pelas lentes de alguém que se identifica como um
profissional do sexo transgênero no contexto sul-africano.
Keywords: photo essay; sex work; South Africa; transgender health; tuberculosis; visual
anthropology
It was not warm that day, but I could feel the sun burning on my face as I sat next to a busy road in
Observatory waiting for Flavia and Siv. Jotting down ideas about what and how we could photograph for
the purposes of telling Flavia’s story, I could not stop thinking about all the complexities that came along
with using a visual component for the project. Flavia and I agreed that she would be the one directing the
photographs and choosing how she wanted to be represented. She told me a few days before, while we were
sitting under a tree where she lives, about how she wanted to be “made human just the way she is” through
what I would be writing and showing of her. Deep in thought about how we were going to do this the right
way, I received a call. It was Flavia: “I will be a few minutes late, my dear, I promise I will hurry up. It is
just my makeup, it is taking long, and I need to look good.” She cares about her appearance. Also being a
model, she has to maintain an image of how she wants to be seen, she’d always tell me. After about forty
minutes, Flavia arrives in a vivid red dress with high heels and sunglasses that cover most of her face.
She sits down next to me and Siv, who had arrived earlier, and places a backpack on the short park wall
we were sitting on: “I am ready now and I brought three dierent outts. I know what I want to say in the
pictures.” She takes out a few bottles of nail polish and asks us which one would look the best and starts
painting her nails. — Pieter du Plessis

P. du Plessis, S. Tshefu and F. Nazier
328
Born and raised in Bujumbura, the capital of Burundi, Flavia grew up being perceived as a little
boy and was expected to take on the role of being a man later on in adulthood. “I have always felt
like a girl, I am a woman,” Flavia says, but this was not something that could be accepted where
she lived with her family and community members. Flavia got involved in LGBT+1 activism
when she finished school, and was and still is very passionate about peer education on healthy sex
practices and raising awareness about issues facing the LGBT+ community in Burundi. However,
she could not live openly as a woman in Burundi and feared for her life. It was in late December
2008, when attending a conference in Cape Town on transgender issues in Africa, that Flavia
decided to remain in South Africa. Two non-governmental organisations (NGOs) helped her do
so: a LGBT+ Burundian one active in Cape Town and a South African one. Having been beaten,
threatened, arrested and stigmatised for speaking out about LGBT+ health issues and political
injustice on several occasions in her home country, Flavia saw South Africa as an escape from
the violence she faced there on an everyday basis. On the grounds of not being able to live life as
a transgender woman2 without risk to her life, she is a documented refugee on the South African
Home Affairs database.
Reecting on the situation in South Africa, Flavia explains that things here are not much better,
and yet they also are. During her long struggle to be granted refugee status so that she could legally
stay in South Africa, she could not nd employment and started volunteering at an NGO, receiving
no remuneration besides the support it gave her to nd her feet. Having to make ends meet and
feeling desperate to move out of a shack in the township of Delft, on the outskirts of Cape Town,
Flavia decided to take up sex work.
It was not easy because I was new in Cape Town. I felt sick and tired. I just wanted to go somewhere
where I can put my feet up and have my private space — my own. I worked hard to be able to pay
my own rent.
By living on the streets in down-town Cape Town, where her clients were located (reflecting
South Africa’s continuing racial and economic segregation of cities), when she did not make

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enough income and only sleeping in the shack in Delft whenever she had enough, Flavia was able
to work longer hours and make more money. This was in 2013. Around February in 2014 she felt
overworked. She realised that she was becoming very ill and, with the help of an NGO, was taken
to a clinic in Salt River where she was diagnosed with tuberculosis (TB).
This photo essay stems from research conducted in 2017 on the life histories of transgender sex
workers in Cape Town who have had TB. The aim was to capture the experiences of the disease
from an anthropological perspective and to respond to a lack of scholarship on LGBT+ bodies
in relation to TB. The research resulted in an ethnography that embraces the everyday alongside
TB to showcase the complexity of the participants’ lives. What we — Pieter (researcher), Siv
(photographer), and Flavia (research participant) — do in this essay is to use photography to
discuss the experience we had when Flavia talked about her experience with TB, a story that ended
up not being about TB at all. What Pieter and Siv had imagined would be a story of suering
became a story of negotiation and reclamation — one that is important for the social science
research canon on the lived social experiences of TB, especially as it is told through the lens
of someone who identies as a transgender sex worker in the South African context. Flavia’s
sentiments about wanting to be “made human,” as already pointed to in the ash3 above, are
situated at the core of what this photo essay wants to relay. Flavia’s experience of being transgender
and a sex worker, and how she negotiates everyday life, need to be highlighted in order to show her
complexity as a human: she wants to be seen and understood with all of that complexity.
South African media and academia have either neglected representing transgender sex workers
or have portrayed them in highly stereotypical ways. Zethu Matebeni (2014, 61) satirically
describes trans exclusionary-feminist writing in her paper entitled “How Not to Write about
Queer South Africa” in the following way: “In your writing, transgender people should never
appear. Those are the confused lots. You should not be bothered to write about them because your
feminist politics does not agree with the idea of transitioning.” Although this is a satirical take
on who should be included in feminist writings and discussions, it remains and mirrors a reality
in South African feminist academia that transgender individuals do not enjoy the same level of
discussion and representation in relation, for example, to cisgender4 women and gay cisgender
men. Alongside this, the discourse in public health about transgender sex workers in South Africa
often feeds into a narrative of individuals who are “at risk” and who have “risky behaviours,”
and does not seek to form nuanced understandings of their everyday lives and language of desire,
ostracism, loneliness and intimacy — a language that we argue is more descriptive and adds esh
to individuals made out to be “the other.” We argue that a better representation can be achieved
with an intersectional approach (see Crenshaw 1991), thus subverting ongoing forms of violence
that are perpetuated because of a lack of understanding of people’s life histories and complexities.
We seek to expand the reader’s understanding and make the point that it is vital to appreciate the
experience of TB among transgender sex workers in Cape Town alongside that of violence, love,
loneliness and life, as well as the negotiation thereof.
It would be easy to point to and visually document the inequality, discrimination and violence that
Flavia and those like her have to endure within a cis- and heteronormative, sexist and racist society.
This is, however, not what Flavia asked of Pieter and Siv. Vinh-Kim Nguyen and Karine Peschard
(2003, 467) remind us of the importance of paying attention to the embodiment of inequality which
“calls attention to the dierent forms through which violence is exercised in a given society and the
ways in which the body serves as a register for, or site of, struggle against forms of domination.” A
disease like TB — as a disease so intimately entangled with poverty — lends itself to a voyeuristic
rendering of squalor, dirt and diseased bodies. In South Africa, TB is a discrediting attribute whereby
the TB-infected person with a particular class status and racial reading becomes the carrier of stigma
and a target for stigmatisation (see Abney 2011, 2018; Macdonald et al. 2016).
Looking at how Flavia chooses to be portrayed tells both the world of academia and the wider
public about who she is and what she has to endure. It echoes what Helen Macdonald and her

P. du Plessis, S. Tshefu and F. Nazier
330
colleagues (2016) argue: that a research methodology and approach to TB that is centred on the
researcher’s choices does not do justice to the ethical demands as set out by Flavia, namely to
be “made human.” Rather, the research approach requires a convivial and negotiable research
methodology and writing that is open to the discretionary collaboration of participants. Subject-
directed photography is not only a useful tool for shifting notions of ownership and power in an
anthropologist-to-participant relationship but is moreover useful in giving more dimensions to the
life of somebody who otherwise is only accounted for as TB patient, sex worker, transgendered,
refugee or research participant; carrier of disease, symbol of stigma, user of health systems,
consumer of pharmaceutical products, and subject of World Health Organisation protocols;
adherer or defaulter; and many other variants constructed through the inherent reication processes
that make up research and reporting mechanisms. Flavia as the director of her own photo shoot
matters because even as a photographer, Siv came into the space with a particular — immensely
medicalised — perception of TB, people with TB, and how TB aects lives. In the photo shoot,
Flavia is able to decide how she wants to be represented and what she wants to tell about herself.
In this case, it is what formed the core of what we argue here — that as a transgender sex worker,
Flavia’s TB and the stigma that comes with that was overshadowed by how she is treated in
everyday interactions because of how she is read through her appearance. Rooted within this,
we urge future research to keep intersectionality in mind when doing research on TB and other
diseases to capture the realities of the research participants, and to ensure that the disease does not
become the entirety of a person or, as Hayley MacGregor (2009, 90) urges us, to “obfuscate [the]
notion of a disciplined body of science.”
Flavia: the celebrity, staring back
Flavia chose to be photographed in a street setting that had come up in a conversation we had had
a few weeks earlier:
When I walk down the street, I feel like a star. I am a celebrity, you know. People stare at me and I love
it because they always wonder who is this, where did this person come from?

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Flavia uses the stares that she is met with when walking down the street and narrates a different story:
I asked myself, why do people look at me, have they not seen a person who looks like me? I am a star,
like on TV. LGBT people are always something else — artists! Some people like drama and we are
the stars.
Staring is regulated by a social code that makes some stares acceptable and others not, often
depending on the particular social context. Rosemary Garland-Thomson (2009, 15) states that
“staring is a conduit to knowledge” and that “stares are urgent efforts to make the unknown known,
to render legible something that seems at first glance incomprehensible.” Steve Ellyson and John
Dovido add that people “enact social hierarchies through visual dominance displays” (cited in
Garland-Thomson 2009, 17). There are forms of power in the ways that people stare at each other
and it depends on who does the staring and who has to endure the stare and what positions they
hold in the social hierarchy of a society. It is clear to see how staring can produce a power dynamic
in a society such as South Africa’s whereby transgender people, who do not fit the visual gender
binary or disrupt that binary, are actively made out to be citizens from another sphere — from
somewhere there, but not here, even though everyone knows that this is not true.
Flavia’s manner in which she makes sense of the staring she is met with is not an artless one:
Sometimes you still have that stigma, it can never be undone. Everywhere you go, people still point
a nger at you, staring at you. It can never die. Just be proud of who you are, you can just be you and
look back at them — in the eye.
The negotiation that Flavia undergoes becomes more than just an attitude; it becomes embodied. Flavia
utilises the act of staring back at people and making a point of it in order to disrupt the assertiveness
of the stare she is met with. Saba Mahmood (2012) argues that some people who are made out to be
subordinates in a particular society at times make use of the very same forms of power they are met
with, to negotiate a better outcome for themselves. Through this, Mahmood subverts language around
resistance — such as that perpetuated in public health discourses about “resilient” and “vulnerable”
patients — and offers a language of negotiation that describes the everyday much better.

P. du Plessis, S. Tshefu and F. Nazier
332
Pieter had numerous conversations with Flavia that had nothing or little to do with her having
TB, with a majority referring to her everyday life and how she negotiates it. Judith Butler (2015,
138–139) notes the following that speaks to the core of how we could interpret the way Flavia
uses the notion of walking in the street as a form of reclamation: “Sometimes to walk the street, to
exercise that small freedom, poses a challenge to a certain regime, a minor performative disruption
enacted by a kind of motion that is at once a movement in that double sense, bodily and political.”
“To love is to be lonely”5
Sometimes I feel lonely too. How can I have a partner who knows about the job I am doing? It is not
easy. You will be a liar to yourself, only God knows who you are. You push yourself to be a normal
person, I will not forever be this person. I want to do other work. It will be good for my future but I
cannot forget where I come from. When I am in a relationship with a man, I cannot be my true self.
I want to be me, not anyone else. But how will that person look at me if they know I do sex work? If
they know I am hiding who I am — a transgender female. Some man will like you and fall in love, and
if they nd out who you are, they cannot be with you, they are scared. He will ask: “How will I show
my family and friends my girlfriend and what you do?”
What we learn in this instance is not so much how Flavia’s TB inuenced her love life or made
her lonely, it tells us more about the society she nds herself in, a society that is based on the
principles of hetero- and cis-normativity. Flavia does not want to be anyone else and, at the same
time, she does not want to continue doing what she is in order make a living. This inner conict
illustrates the manner in which normative lifestyle practices inuence imaginaries of the self and
dreams about the future, and how they cultivate fear. The loneliness that Flavia experiences points
to the intersecting stigma at play in her life, one which renders her life experiences in such a way
that she knows where she ts into the dominant culture of cis- and heteronormativity and what she
needs to suppress and deviate from in order to play a role in society.

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What it means to make human
Decentring TB as the sole variable illustrates that people who have or had TB live more nuanced
lives far beyond just the disease. This decentred approach, achieved through a convivial and
collaborative research methodology, brings to the fore not only the embodied experience of TB
but points to the socially ill society Flavia finds herself in — one that operates on notions of cis-
and heteronormative standards, and one that is racist, afrophobic and patriarchal. By exploring
notions of walking down the street, staring, love and loneliness in Flavia’s life, it is possible to
begin to understand that a focus only on the disease and its medical qualities leaves a major gap
in our understanding of the people living with it. By using visual means as part of the research,
we have produced a story of TB and not on TB. In order for us as social scientists to work with
the notion of destigmatising TB and push towards such a state of being, we need to consider the
representations we produce and reproduce in journals like this and think critically about what we
and what our participants want when representing a narrative.

P. du Plessis, S. Tshefu and F. Nazier
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Acknowledgements
We would like to thank Kharnita Mohamed for her supervision, Dr Helen Macdonald for her continuous
support and for providing us this opportunity, as well as everyone else who has contributed in various ways
to this paper. Furthermore, we would like to thank the Postgraduate Funding Office at the University of Cape
Town as well as the Wellcome Trust “Swallowing the World” collective for contributing to research funding.
Notes
1. The term “LGBT+” is an acronym for lesbian, gay, bisexual and transgender, with the plus indicating
the inclusion of all diverse forms of sex, gender and sexuality, such as intersex, questioning, queer,
pansexual and asexual (Patel 2017, 61).
2. “Transgender” refers to persons whose gender does not correspond with their assigned sex at birth.
Nigel Patel (2017, 61) explains that it often “operates as a way of promoting association between those
who transgress the gender binary.” It is thus often seen as an umbrella term.
3. This draws on the genre of flash fiction that attempts to tell a story in 1 000 words or less. In Children
of a Bitter Harvest, Susan Levine (2013, xxv) uses flash ethnography “to give ‘snapshots’ of large
themes in easily accessible and digestible forms.”
4. The term “cisgender” refers to persons whose gender correlates with their assigned sex at birth (Patel
2017, 61).
5. The quote in this heading is taken from Moustakas and Lederberg (1961, 56).
ORCID
Pieter du Plessis https://orcid.org/0000-0002-4775-717X
Siv Tshefu https://orcid.org/0000-0001-7343-3606
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