Keywords

4.1 Introduction

The Open Society Foundations, a group that funds civil society groups around the world to advance justice issues, describes sex work as “consensual sexual services or erotic performances” between adults in exchange for material gain, whether in money or goods (OSF 2019). It also observes that financial gain is the main reason for involvement in sex work, as the majority of those involved use these activities to earn a living (OSF 2019). The International Union of Sex Workers estimates that there are 52 million people worldwide engaged in sex work, of whom about 80% are female (IUSW 2023). In the following sections we outline how sex workers can routinely experience stigma, violence, poverty and difficulties accessing health services, as well as mental health issues.

4.1.1 Stigma

Sex work is one of the most stigmatised professions in many parts of the world (Hammond and Kingston 2014; Ma and Loke 2019; Benoit et al. 2020; Benoit and Unsworth 2022). Goffman describes “stigma” as something that is deeply discrediting and puts people in a situation of being “disqualified from full social acceptance” (Goffman 1963: Preface). Issues that impede the full social acceptance of sex workers may arise from historical, societal and cultural attitudes, religious beliefs and/or regulatory and legal structures. Hatzenbuehler et al. (2013) define stigma as “the co-occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised”. In other words, the assignment of stigmatised labels or stereotypes to groups such as sex workers results in marginalisation, inequalities, loss of status, experiences of discrimination and other violations of human rights (Wong et al. 2011).

Sex workers are likely to experience both felt and enacted stigma.

Felt stigma (internal stigma or self-stigmatization) refers to the shame and expectation of discrimination that prevents people from talking about their experiences and stops them seeking help. Enacted stigma (external stigma, discrimination) refers to the experience of unfair treatment by others. Felt stigma can be as damaging as enacted stigma since it leads to withdrawal and restriction of social support. (Gray 2002: 72)

Examples of enacted stigma may be found in the complexity of legal situations relating to sex work in many countries, where sex work is illegal or “limitedly legal” (ProCon 2018). For instance, it may be legal to provide sexual services, but illegal to solicit, live on the proceeds of sex work, or pay for sex (Brooks et al. 2023). The criminalisation of sex work is considered to have a major impact on the marginalisation of sex workers (Tsertekidis 2023), many of whom already belong to marginalised or vulnerable communities such as the LGBTQ +  community, minoritised ethnic populations, and migrants who may have been trafficked. Belonging to a stigmatised group adds a burden on top of those already experienced by people from disadvantaged populations (Hatzenbuehler et al. 2013).

The study by Wong et al. (2011) of female sex workers in Hong Kong describes their various attitudes to disclosing their occupation to those close to them. Although some had been open with family members, most felt that family and close friends would not be able to accept their work and would judge them. This had led to many sex workers feeling unable to disclose their occupation and taking steps such as working in a different location to keep their secret.

4.1.2 Violence

The criminalisation of sex work in many countries contributes greatly to the stigmatisation endured by sex workers and negatively affects their interactions with the police and the justice system. Benoit et al. (2018) cite multiple studies recounting incidents of harassment, abuse, public humiliation and physical assault by the police, both during and outside the sex workers’ working hours. Such a fraught relationship with the police and justice system can make sex workers reluctant to report incidents of assault and even rape.

Sex workers … report a hesitancy, and often absolute refusal, to access protective services after being victimized. Workers say they worry the police will insult them, ignore them, or charge them with a criminal offense … This is particularly the case for sexual assault victims, who sometimes face the false assumption held by some police officers that sex workers cannot be raped. (Benoit et al. 2018)

4.1.3 Poverty

Many sex workers live in areas afflicted by poverty and high unemployment rates (Brooks et al. 2023). The need to earn a living and to meet family responsibilities, combined with a lack of other opportunities or means to earn money, often makes poverty a driving force for people to engage in sex work (Tsertekidis 2023). Being in a situation of economic vulnerability can impact on sex workers’ ability to negotiate with their clients regarding their fees and insistence upon condom use. This has obvious implications for both living standards and health, with the prevalence of HIV and sexually transmitted infections (STIs) disproportionately burdening the sex worker community (Shannon et al. 2015).

4.1.4 Access to Health Services

Accessing healthcare services can be difficult for sex workers, particularly in countries where sex work is criminalised. Sex workers may be afraid to seek medical treatment in case they have to disclose their occupation and then encounter discrimination or are reported to the authorities. The survey of 469 healthcare providers in Germany by Langenbach et al. (2023) revealed that the health professionals held similar levels of prejudice towards sex workers to those of the wider population, suggesting that better training is necessary to sensitise healthcare staff to the needs of sex workers seeking treatment and support.

4.1.5 Mental Health

Sex workers have been shown to experience high rates of problems such as mood disorders, anxiety, post-traumatic stress disorder, personality disorders, suicidal behaviour, distress, substance abuse disorders and other psychiatric conditions (Martin-Romo et al. 2023). Martin-Romo et al. (2023) report that sex workers under 20 years old appear to have a higher vulnerability to mental health issues than their older colleagues.

Undoubtedly, routine stigmatisation, combined with poverty, violence and difficulty accessing health services, as well as mental health issues, places many sex workers in positions of vulnerability.

The next section introduces the Nairobi sex workers and the research clinics where they can access health services. This is followed by the description of a four-stage community-led investigation to uncover what vulnerability means to the Nairobi sex workers.

4.2 The Nairobi Sex Workers and the Ten Sex Worker Clinics

We use the term “Nairobi sex workers” for the more than 40,000 sex workers who are registered in ten STI/HIV prevention, treatment and research clinics in and around Nairobi. Joshua Kimani, one of the co-authors of this book, is the clinical director for those clinics, described below, and another co-author, Joyce Adhiambo, is a peer educator (see below) and community researcher among the Nairobi sex workers.

Most of the Nairobi sex workers have no income or support other than the meagre income derived from sex work. They live in small tin shacks, work well into middle age and accept dozens of clients every day because the payment from each is very low (Lucas et al. 2013). In addition to poverty, social circumstances such as the loss of parents to HIV/AIDS, domestic violence and the need to provide for children and extended families in an environment where jobs are scarce conspire to force them into sex work (Lucas et al. 2013).

As a group, they face difficulties accessing health care and essential medicines, partly due to the criminalisation and high stigma associated with sex work in Kenya. They can, however, access health services at programme and research clinics specialising in the treatment of STIs, for example the Sex Workers Outreach Programme (SWOP) clinics located in Nairobi County. These clinics provide care and medical treatment for STIs in an effort to control the spread of HIV in the country. Some of the sex workers also enrol in research studies as volunteers, sharing information and samples needed for specific studies. Through an active community and engagement process, some also enrol in clinical studies, for instance about pre-exposure prophylaxis for HIV (Bailey et al. 2023).

The initial research cohort of sex workers was formed in around 1984, when researchers from the University of Manitoba (Canada) and the University of Nairobi joined forces to conduct studies on STIs. It was at this time that the sex worker community first attracted the attention of international scientists, when some of them tested positive for HIV. In the early 1990s, it was also found that a small percentage of the sex workers repeatedly tested negative for HIV infection, despite their consistent high-risk behaviour (AIDS Anal Africa 1995). The research scope rapidly moved to seeking a cure for HIV/AIDS, as well as a better understanding of the epidemiology of HIV and risk factors associated with its spread.

With additional resources made available through the Centers for Disease Control and Prevention (CDC) and the US President’s Emergency Plan for AIDS Relief (PEPFAR) since 2005, the number of research clinics has grown to ten in Nairobi. From 2009, men who have sex with men (MSM) have been seeking HIV prevention and treatment services from the same clinics. Like sex work, their sexual activity is illegal and highly stigmatised in Kenya.

In August 2023, the numbers enrolled in the programme stood at 33,720 female sex workers and 13,147 MSMs. Most of the MSMs enrolled are also sex workers trying to secure a living. These numbers represent about 65% of the female sex workers and MSMs residing and working in Nairobi. Unlike other parts of the world, in Kenya sex workers generally work independently, not through pimps.

Due to the need for effective mobilisation, engagement and communication between clinic staff and potential research participants, peer educators are selected from the community with two main tasks. First, they help educate potential research participants on the types of research studies that are run, the process of informed consent and safe sex practices, such as condom use. Second, they represent the interests of the community when dealing with researchers and government agencies.

While the outreach clinics provide access to health services for sex workers and MSMs, their lives are still highly precarious owing to their considerable economic disadvantage and the legal situation in Kenya. There is no statutory prohibition on the sale of sexual services in Kenya, but the law forbids “living on the earnings of sex work” and “soliciting or importuning for immoral purposes” (UNAIDS 2020), thereby indirectly prohibiting sex work. Kenya’s Penal Code and Sexual Offences Act do not define “prostitution”, nor do they directly prohibit “prostitution” (FIDA Kenya 2008). However, many local authorities across Kenya have elected to address sex work under their subsidiary legislation.

For instance, Section 19(m) of the Nairobi General Nuisance By-Laws (2007) provides that “any person who in any street – loiters or importunes for purposes of prostitution is guilty of an offence” (KELIN 2016). Most of these by-laws are vague and leave the determination of the exact offence to the imagination and interpretation of arresting officers. Thus, sex workers enrolled in the SWOP clinics regularly report violations of their human rights and suffer extra-judicial abuse at the hands of law enforcement agents, including rape without the use of condoms. This puts those raped at high risk of contracting HIV and other STIs, in addition to unplanned and unwanted pregnancies. At times, when those living with HIV and on antiretrovirals are locked up in police cells, they miss their medications, which further violates their rights to the highest attainable standard of health.

The clinics are mostly funded by external donors, in particular from the United States government through PEPFAR, the Joint United Nations Programme on HIV/AIDS (UNAIDS), the Global Fund to Fight AIDS, Tuberculosis and Malaria, the Bill & Melinda Gates Foundation and other sources through the University of Manitoba. The programmes currently running are mostly about HIV prevention and treatment and some are about research ethics, such as the Wellcome Trust grant that has funded the research for this book.

The primary objectives of research undertaken in the ten SWOP clinics focus on the health and wellbeing needs of the sex workers. They include identifying and describing key characteristics that place sex workers at high risk of infection and describing how sex workers can be reached and served by various health programmes. Despite this clear link to local health needs, many sex workers are highly reluctant to take part in research that collects personal data. There is a particular fear that involvement in research will reveal to third parties—such as landlords, colleagues and family members—that they earn their living through sex work. An even greater fear is that personal data will be revealed or shared with law enforcement agents.

While it is obvious that privacy and confidentiality are key issues when undertaking research involving sex workers,

there has been reluctance among scholars to comment on their research process, especially with regard to how they deal with the protocols for research ethics when conducting … studies among female sex workers. (Sinha 2022)

In our activities, we therefore respected the clearly reasonable fear of many sex workers that their personal data could be misused and increase stigmatisation, discrimination or even violence. We prioritised this question: is it possible to obtain meaningful information without the processing of personal data through a community-led consultation exercise that involves workshops and one-to-one conversations?

4.3 What Is Vulnerability as Defined by the Sex Workers Themselves? A Community-Led Consultation Exercise

Community-engaged approaches are often promoted in social science research to prioritise the knowledge of the communities most impacted by research (Beckett et al. 2022). Thompson et al. (2021) view the multiple forms that engagement activities can take along a continuum, from simple outreach and education to full partnership, reflecting the degree of meaningful involvement of the community in question. All types of community-engaged approaches to research traditionally involve two parties: non-academic community stakeholders and academic researchers. As discussed in Chap. 5, a central tenet of engaged research is that communities must be involved on their own reasonable terms (Fawcett 2021), which requires flexibility and sensitivity in any work undertaken. To address the question of how sex workers define vulnerability for themselves, we went beyond community engagement in the traditional sense. Instead, we opted for an approach that was community-driven, community-led and, in the main, community-analysed.

A novel approach to inquiry was trialled with the sex worker community in Nairobi, one that fell somewhere between community engagement methods and social science research methods. While our approach had much in common with both, it did not involve the coming together of two parties (as in community engagement), nor did it adopt the kind of systematic approach that might be expected in social science research. Community engagement in research is often employed to address mistrust, misunderstandings or power imbalances as partners from different standpoints come together (Holzer et al. 2014). Our intention was to avoid these issues altogether; so our community-led consultation was undertaken by the community, for the benefit of that community.

The community-led consultation exercise that we engaged in was facilitated by Joshua Kimani and Joyce Adhiambo, who are both deeply embedded in the sex worker community in Nairobi. Each stage in the process was informed by findings from the previous stage and designed with local preferences and needs in mind. This meant that meaningful information was obtained in a manner that was sensitive to the fears and wishes of the sex worker community, in a space that was considered safe and by people who were trusted. The shape of the consultation was not set at the start. This evolved as the consultation progressed through the four stages shown in Table 4.1.

Table 4.1 Stages in the community-led consultation exercise
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The findings from the four stages of the community consultation exercise are explained below, after a section that describes how a safe space was created for the community workshops.

4.3.1 Creating a Safe Space

Safe spaces were created for the workshops after consultation with sex workers at the clinics and according to the criteria set out below. When selecting venues and making arrangements, we took all these factors into account. The workshops took place in meeting rooms of Nairobi hotels.

4.3.1.1 Approved Hotel Location

Most sex workers in Nairobi live in informal settlements and use public transport for their work, so hotels had to be easily accessible from the major public transport stops. Hotels in the central business district and within reach of key bus stops were preferred, as were hotels located near well-known landmarks. Nairobi has no house numbering system as used elsewhere, and therefore landmarks are useful in identifying meeting venues.

4.3.1.2 Approved Hotel

Mindful of the high risk of stigmatisation, the sex workers who were consulted about workshop venues pointed out that the non-stigmatising attitude of staff (security team, reception and waiters) at some hotels would create confidence and the right environment for inclusive discussions.

4.3.1.3 Soundproof Room

To maintain a high level of confidentiality, the sex workers preferred to meet in a room that was soundproof or at least equipped to ensure that the discussions were not overheard.

4.3.1.4 Private Toilet Facilities

In past encounters, some hotel managers had accused sex workers of not being clean. Hotel venues with private toilet facilities for the duration of the meetings were therefore strongly preferred because they obviated contact with other guests. Such private facilities tended to lower the tension among the participants, which improved the mood and productivity of meetings.

4.3.1.5 Good-Quality Refreshments

Given that many sex workers who use the ten research clinics are highly impoverished, they preferred hotels that served substantial and tasty meals, snacks and beverages during meetings.

4.3.1.6 Familiar Meeting Facilitators

It was highly important to the sex workers that the meeting facilitators should be familiar faces from the community. This was especially the case for the Stage 1 workshops, which dealt with HIV infection among the sex workers.

4.3.1.7 Chatham House Rule

No one would be allowed to share personal information disclosed at the venue, a fact emphasised ahead of the meetings by the familiar meeting facilitators. (We did not use the term “Chatham House Rule” in our discussions with the sex workers, but have added it here for clarity.)

4.3.1.8 Language Sensitivity

For the best outcomes in any discussion with the sex workers enrolled in the ten clinics, a blend of Kiswahili and English (known as Sheng) is always used. Most sex workers are very comfortable with that medium since it allows them to express themselves without feeling inhibited.

4.3.1.9 No Personal Data Collection

It was made clear from the start, in the invitation to the workshop, that no personal data would be obtained or video or audio recordings made, as the sex workers greatly feared the unwanted release of personal data. The only record of the meetings would be the notes taken by the familiar meeting facilitators. This decision proved decisive, as it freed participants to share experiences such as sexual abuse and violence.

Figure 4.1 summarises the measures taken to create a safe space for the workshops.

Fig. 4.1
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Measures to create safe workshop spaces

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Is it possible to create a safe space at the workshop so that participants feel free to engage honestly and authentically with each other and with the facilitators? The participants noted that they felt recognised and useful, and requested that similar open consultations be held regularly. One delegate’s observation was recorded in full.

I didn’t know that a discussion forum where personal details are not collected can be so liberating! We spoke without fear and poured our hearts out. It is the first time I have been able to talk about being threatened with death by a family member and a former regular client to anyone. We need more of such discussion to improve our healing process.

4.3.2 Community Consultation Stage 1: HIV Infection—A Major Vulnerability

Prior to the first workshops in Nairobi, informal discussions around the word “vulnerability” revealed that there was no equivalent word locally. Hence, it became obvious that we could not arrive at a definition of the term applicable to the sex workers simply by asking them what vulnerability meant to them, so the decision was taken to begin by focusing on a shared vulnerability. At the time of planning the workshops, a rise in HIV infections had been reported at the ten clinics for almost two consecutive quarters. The risk of HIV infection is a life-threatening vulnerability that sex workers constantly have to navigate for themselves, their partners and their clients, and it appeared to be increasing. Thus, the rise in infections was chosen as a topic that was relevant to the community and of potential benefit to it, and one that would resonate with it immediately, without any explanation needed. It was anticipated that examination of this major vulnerability-related challenge could lead to the identification of trigger factors and exacerbators of this vulnerability.

To encourage a free flow of thoughts and conversation, Joshua Kimani opened the discussion by outlining the topic and then asking just one question: What is going on? This question led to some serious and heated discussions about what could have contributed to the high number of HIV infections noted in the community. The interest and enthusiasm of the community members about sharing their perspectives was consistent across the three meetings.

Following the three meetings, the facilitators summarised the meeting notes, identifying the 41 main reasons (see Appendix) why the sex worker delegates thought that the number of HIV infections had risen in the last quarter and was continuing to rise. (The workshops also included discussions about how to overcome the problem, a matter that is not part of this book.)

NVivo software was then used to code and theme the 41 reasons identified for the increase in HIV infections, a task undertaken by UK members of the team. Thematic analysis revealed two primary trigger factors or root causes of the increase in HIV infections: poverty and stigma. The dual burdens of poverty and stigma were believed to exacerbate vulnerability to HIV infection either directly or indirectly. For example:

  • self-stigma, increasing mental health issues and leading to risky sexual behaviours.

  • a loss of livelihoods, eroding empowerment and capacity among sex workers to negotiate and avoid risky sex.

At the time of the workshops, the impacts of the COVID-19 pandemic were still at the forefront of people’s minds. During the pandemic, the pressures of poverty and stigmatisation for sex workers had increased, and consequently the pandemic also exacerbated many of the identified reasons. For instance:

  • an increase in poverty, due to the loss of livelihoods for the sex workers caused by COVID-19, leading to risk-taking behaviours.

The interlinked nature of many of the identified reasons revealed clear pathways to increased vulnerability to HIV infection, as shown in Fig. 4.2.

Fig. 4.2
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Poverty and stigma pathways to increased vulnerability to HIV infection

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All the identified pathways appear to be rooted in either poverty or stigma or, usually, both. However, as the elements in these pathways are linked, exacerbation at any point could lead to increased vulnerability to HIV infection.

In line with the literature outlined in Sect. 4.1, vulnerability to mental health issues was identified as a major problem, as was vulnerability to violence from a range of abusive relationships, including those with clients, the police and partners. Additionally, the findings revealed that many sex workers turn to alcohol and/or drugs, which, in turn, serve to increase their vulnerabilities.

Aside from these interlinked pathways, several other reasons for the increase in HIV infections were identified, including a lack of understanding of and incorrect information about safe sex practices, a lack of proper support from peer educators, support groups or clinical staff, and a lack of access to condoms.

It is clear from the findings that many of the contributory factors to increased HIV infections are beyond the control of the sex workers themselves. Intervention at a higher level is needed to alleviate the pressures that arise from poverty and the stigma associated with sex work. As Nobel Laureate Amartya Sen (2005: xii) puts it, “Preventable diseases can indeed be prevented, curable ailments can certainly be cured”—and HIV infection is preventable. But where poverty and stigma intersect for the Nairobi sex workers, structural violence leads to life-threatening disadvantages. Among the 41 reasons the sex workers provided in the workshops, many point to structural violence, for example a lack of access to condoms, sexual violence by police officers, difficulties adhering to antiretroviral medication due to hunger—a known complication in achieving adherence in antiretroviral therapy (Weiser et al. 2010)—and lack of understanding about safe sexual practices. Poverty and stigma pathways to increased HIV infections are reminiscent of the structural violence described in one of the most powerful books published on poverty in the early twenty-first century: Pathologies of Power by Paul Farmer (2005).

[N]o single axis can fully define increased risk for extreme human suffering … Today, the world’s poor are the chief victims of structural violence – a violence that has thus far defied the analysis of many who seek to understand the nature and distribution of extreme suffering. (Farmer 2005: 49, 50)

Structural violence involves.

harm caused by embedded social structures rather than by violent physical acts. Socioeconomic and political factors that disadvantage certain individuals or groups are embedded into the structure of society, and cause harm to those individuals or groups by denying them the same privileges and life chances as the rest of society. (Bohm 2018)

Aside from insights into the structural violence that serves to enhance the sex workers’ vulnerabilities, the workshops also provided insights into their felt sense of vulnerability. For instance, attendees referred to an “erosion of self-worth”, to “poor self-esteem” and to “self-stigmatisation”. These feelings are deeply enmeshed in the structures that create poverty, stigmatisation and so on, which were further explored in Stages 2 and 3.

4.3.3 Community Consultation Stage 2: Living with Structural Violence

For Stage 2 of the community-led consultation exercise, 20 of the attendees from the first workshops were invited to attend a follow-on workshop. The facilitators were keen to engage the attendees in deeper discussions about why the sex workers were still at a higher risk of HIV infection, despite heavy investments by donors in Nairobi and Kenya in general. After hearing a summary of the findings from the first workshops, the attendees were asked: What does all this tell us about sex workers? We hoped that this question would provoke reflection upon the sex workers’ own situations and help them gain a better understanding of their dilemmas.

Although the COVID-19 control measures were at the forefront of people’s minds, the workshop participants were quick to note that although COVID-19 had had some major impacts on livelihoods and the ability of clients to pay for sexual services, the excess HIV infections pointed to deeper, underlying issues. Notes taken during the workshop and later summarised by the facilitators revealed 15 underlying issues that, for the sex worker population, contributed to their vulnerability. Thematic analysis of these issues revealed four major stresses associated with living with the types of structural violence that the sex workers experienced, as set out in Table 4.2 and graphically depicted in Fig. 4.3.

Table 4.2 Four major stresses described by sex workers
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Fig. 4.3
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Four major stresses described by sex workers

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These major stresses all served to increase vulnerability, and the persistently high stress levels among the sex workers were believed to have led to substance abuse and risky sexual behaviours.

4.3.4 Community Consultation Stage 3: Thinking About Vulnerability

For Stage 3 of the community-led consultation exercise, 20 of the attendees from the first workshops were invited to explore issues around vulnerability. The objective was to discuss vulnerability issues encountered in their day-to-day lives and when participating in research studies.

The discussion began with attendees sharing how they were affected at a personal level. Many had difficulties handling the stigma, discrimination, marginalisation and exclusion meted out by relatives, friends and members of the wider population. To cope with these challenges, some individuals had taken to drug and substance abuse, leading to self-stigmatisation, self-isolation, low self-esteem and suicidal thoughts, aggravating the perceived marginalisation at individual level.

Many of the sex workers had been forced to take measures such as working in a different location to reduce the risk of being exposed as working in the sex trade. These circumstances also weakened their resolve to accept their HIV/AIDS status and/or disclose it to their peers. The lack of support from family and friends could lead to self-hate and no or poor compliance with HIV/AIDS medication.

Marginalisation was also reported to be rampant among sex workers. Some said they felt disrespected and/or despised at the community level, especially on housing issues. In some housing estates, women from the general population would gang up against them since they were viewed as potential threats to marriages. It was reported that some landlords had even evicted them for no reason other than their being sex workers. This affected their self-esteem and sense of self-worth.

Following this emotional discussion, an exercise was conducted to try to identify a Kiswahili equivalent for the word “vulnerability”. Since the locally used languages, including Kiswahili, had no single word for vulnerability, the descriptive phrases set out in Table 4.3 were suggested by the sex workers.

Table 4.3 “Vulnerability” in Kiswahili
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What is particularly striking about the phrases chosen is that they reflect the types of structural violence that impose life-threatening disadvantages on sex workers. They are affected by stigmatisation and poverty, and live in a state of danger or suffering. The immense stresses that are part of their lives can create a sense of weakness, but “weakness” might also refer to their inability to change the socioeconomic and political factors that cause them harm.

The final workshop activity involved a group discussion on what could be done to help minimise vulnerability in research. Seven key points were summarised.

  1. 1.

    Ensure confidentiality. This was regarded as a top priority. It is needed to ensure that those who have not revealed their profession or health status to others cannot be harmed by privacy breaches.

  2. 2.

    Ensure meaningful engagement and involvement in research. This helps build capacity in the sex worker populations and affirms that the engagement is not only being undertaken as tokenism.

  3. 3.

    Engage members of the community throughout. They must be engaged at every stage: before the study is initiated, during the conduct of the study and when results are being interpreted and disseminated.

  4. 4.

    Implement community education on the research subject matter. This was seen as the surest way to improve agency in potential study participants. Education was also noted as the best route to recruitment, as it can improve informed decision-making.

  5. 5.

    Act with honesty and fairness. Some researchers show up in the community, collect data and pictures, and then disappear. Later, photos appear in reports about issues that were not mentioned in the stated study objectives.

  6. 6.

    Look after the research participant’s welfare. This might, for example, be through psychosocial support following interviews about painful lived experiences.

  7. 7.

    Be trustworthy. This was regarded as the best way to build good relationships between researchers and research participants.

4.3.5 Community Consultation Stage 4: What Does Vulnerability Mean to You?

Delegates from the Stage 1 workshops were invited to take part in individual conversations. Nineteen conversations with sex workers were conducted by Joyce Adhiambo, a peer educator and community researcher. The conversations were thus conducted.

  • by a known and trusted peer

  • sensitively, with Joyce listening carefully to glean new information from the sex worker

  • with no record kept of personal data

  • at a safe pace

  • in a suitable language

  • with findings recorded only as written notes.

Seven questions were asked during the conversations.

  1. 1.

    What does vulnerability mean to you? In your own words.

  2. 2.

    Give three or more examples of when you were made to feel vulnerable as a person.

  3. 3.

    Would you consider sex workers in Kenya as a group vulnerable in relation to other groups? In other words, are the sex workers more or less vulnerable than other groups?

  4. 4.

    A person (not you) can be vulnerable in many ways. Give examples of when other people can be made vulnerable.

  5. 5.

    In your opinion, what other words have a similar meaning compared to the word “vulnerability”?

  6. 6.

    At the SWOP clinics level, how can the vulnerability of sex workers be minimised?

  7. 7.

    How can vulnerability among sex workers attending or accessing HIV prevention and treatment programmes in Kenya be minimised?

For the purposes of this chapter, data analysis focuses on Questions 1 to 5 to construct an understanding of how Nairobi sex workers perceive and experience vulnerability. Data from Questions 6 and 7 is drawn on where it contributes to this understanding.

Conversations were conducted in Kiswahili or a blend of Kiswahili and English (Sheng), whichever suited the person being spoken to. The information was then translated and typed up from Joyce’s notes into English with a few Kiswahili phrases. The scripts were then checked by Joshua Kimani before being forwarded to Hazel Partington, a co-author and UK member of the team, for thematic analysis. Google Translate was used to translate the few Kiswahili phrases, and these meanings, along with a few other contextual queries, were later checked in a meeting between Hazel, Joyce, and the person who supported the community researcher (Polly N Ngurukiri, see Acknowledgements).

Methodology for Analysing Conversation Data

The data obtained from the conversations was analysed qualitatively using thematic analysis following Braun and Clarke (2022). Data was uploaded to NVivo for the initial coding phase. The second phase of coding entailed the tentative codes from NVivo being reduced and refined, and then exported to Word documents for the codes to be finalised and the themes developed. The themes were discussed with all co-authors of this book.

Three main themes were constructed from the data. These are listed in Table 4.4 with the concepts encompassed by each theme.

Table 4.4 Nairobi sex workers’ understandings and experiences of vulnerability
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4.3.5.1 Vulnerability Means Stigmatisation, Discrimination and Marginalisation

The sex workers’ understanding of the meaning of vulnerability was shaped by their experiences of being stigmatised, discriminated against and marginalised. All 19 referred to stigmatisation, discrimination or marginalisation. Table 4.5 provides an overview of the various aspects, coupled with examples from the conversations with the sex workers. The examples are authentic, but not verbatim quotes, as they are drawn from notes of the conversations.

Table 4.5 Aspects of stigmatisation, discrimination and marginalisation
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4.3.5.2 Vulnerability Means Being at Risk or in Danger

All of the sex workers mentioned feeling at risk or in danger, either as a meaning of vulnerability or as an example of when they have felt vulnerable or observed other people to be vulnerable. They described vulnerability in many ways, for instance as being at a high risk of violence, as being attacked or as something risky that can get or catch you unaware. Table 4.6 provides an overview of the various aspects, coupled with examples drawn from the conversation notes.

Table 4.6 Aspects of risk or danger
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4.3.5.3 Vulnerability Means Mnyonge

The Kiswahili word mnyonge is variously translated as “poor”, “wretched”, “frail”, “weak” or “miserable”. Two of the SWOP outreach workers explained that it describes a state of being vulnerable, not able to defend oneself, not able to speak for oneself, lacking information and having low self-esteem. This word, which was mentioned by some participants as being similar in meaning to “vulnerability”, encapsulates a nuanced sense of a state of being vulnerable. Table 4.7 provides an overview of the various aspects, coupled with examples drawn from the conversation notes.

Table 4.7 Aspects of mnyonge
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In terms of group vulnerability, all the sex workers agreed that they were more vulnerable than other groups. There was an acute sense that risk and danger also extended beyond perceptions of individual risk to perceptions of danger for the whole group. This was viewed as being related to the work they were doing and being viewed as outcasts. As noted during one of the conversations, sex workers are at high risk of violence, rape and unprotected sexual intercourse that can lead to infections like HIV and AIDS, and other STIs. They are also vulnerable because the wider community does not protect them and instead violates their human rights. When sex workers report these cases, the relevant authorities, such as police and government officials, do not take it seriously.

4.4 What Vulnerability Means to the Nairobi Sex Workers

Through the successive stages of the community-led consultation exercise, we were able to delve deeper and deeper into what vulnerability means to the Nairobi sex workers.

Stage 1 showed that structural vulnerabilities are intersectional. At the root may be poverty and/or matters related to stigmatisation. These both cause and are made worse by other forms of structural violence. For instance, the stress created by being stigmatised can lead to mental health and drug abuse problems, which, in turn, can aggravate both poverty and stigma. It is not possible to untangle the vulnerability that sex workers experience from the social, economic and political structures that bind them.

Stage 2 helped us distinguish four major stresses for the sex workers. What was viewed as stigmatisation in Stage 1 can be further broken down into stigmatisation, discrimination, marginalisation and abuse.

Stage 3 told us more about how the sex workers viewed vulnerability through their choice of phrases in Kiswahili that have meanings similar to “vulnerability”. Again, the themes of poverty, stigmatisation and the sense of being at risk or in danger were apparent. But this exercise also highlighted the felt sense of weakness associated with living with the significant stresses that are the norm for sex workers.

The one-to-one conversations in Stage 4 permitted deeper exploration of the sex workers’ lived experiences. Their revelations further confirmed and illustrated what had emerged from the workshops regarding stigmatisation, discrimination, marginalisation, violence and abuse, and the pressures of living in poverty. These conversations also gave us further insight into the sex workers’ felt sense of vulnerability, especially through the theme of mnyonge. The above-mentioned felt sense of weakness was expressed in various ways, including not being able to express or defend oneself, not understanding all that was happening, and a general lack of mental strength.

4.5 Conclusion

Many Nairobi sex workers are reluctant to take part in research, even when the research is directly linked to their health needs. One of the main reasons for this reluctance is the collection of personal data. Where a person can lose a tenancy or be abused by law enforcement agents for being a sex worker, it is paramount that such information not be disclosed unnecessarily. In essence, this means that the most ethical way to undertake research with Nairobi sex workers is to do so without collecting personal data, wherever possible.

With the sex worker community in Nairobi, a novel approach was developed that connects community engagement with social science research methods. Instead of the traditional bridge-building between (overseas) researchers and local communities through various pre-set encounters, our community-led investigation was undertaken by the community, for the benefit of the community. This meant that the process was planned iteratively, starting at Stage 1 with unusually open questions to 42 sex worker delegates—What is going on? Why are HIV infections on the increase in the community?—and culminating in Stage 4 with 19 inclusive, sensitive conversations between a community researcher and a subset of the delegates to explore the term “vulnerability”.

Socioeconomic and political structural vulnerabilities create obvious poverty and stigma pathways to HIV infection and other forms of harm. Some of the findings were positive and potentially of great benefit, such as discovering how to create a safe space so that participants felt free to engage authentically with each other and with the facilitators. However, the stories of exploitation, rape, lack of condoms in a high-risk setting and abuse were shattering. As a research team, we always want to make a difference where we engage, and in this setting the hurdles seemed insurmountable. Nevertheless, the participants declared that they felt recognised and useful, and they requested that similar open consultations be held regularly. Importantly, they also suggested ways out of vulnerability, and, once this book has been completed, we will take those forward in collaboration with the community researchers from the San community (see Chap. 3).

What seemed absolutely obvious to us is this: we were party to research engagement with possibly one of the most vulnerable populations in the world. These sex workers struggle to satisfy their basic needs; they cannot always access life-saving drugs; sometimes they are unjustly imprisoned or do not report violent crimes like rape to the police for fear that this will aggravate their situation. In our experience, this group is highly likely to be excluded from research by overprotective research ethics committees from higher-income settings playing the “vulnerable” card. Our reply to any future blocking attempts is that it depends on how the research is undertaken and how precisely it is tailored to the needs and preferences of the vulnerable individuals in question.

The Kiswahili term mnyonge, used in our conversations with sex workers to explain the term “vulnerability”, expresses a sense of weakness without the ability to defend oneself. Defending oneself means that this group must not be left behind in research, but instead must benefit from co-building approaches that generate new knowledge without increasing risks and burdens.