Context of the Study

The Sepo Study was initiated against a backdrop of growing recognition of HIV and disability as interconnected global health concerns[10]. In particular, the vulnerability of people with disabilities to HIV has received growing attention, with a focus on HIV prevention[11–14]. However, relatively little is known about the HIV care, treatment and support needs of people with disabilities who have become HIV-positive (PWD/HIV+)[15].

It is only relatively recently that the needs for HIV prevention and management strategies for PWD have been recognized [3,10,15]. While there has been renewed interest in HIV-related stigma in recent years [16–19], including in Southern African contexts [20,21], to date the experiences of PWD who later acquire HIV infection have not been explored in depth. Research (including that in Southern African settings) has also identified disability as a source of stigma in and of itself. A groundbreaking survey of 57 countries in 2004 conducted by Groce revealed that PWD are at increased risk on all known risk factors for HIV (e.g. poverty, sexual violence, lack of education) [11]. Despite the importance of this issue, prevalence studies of HIV amongst PWD are only now beginning to emerge [22]; for example, research regarding prevalence amongst deaf persons in Southern Africa reveals that they are at least as likely if not twice as likely to become infected with HIV as able-bodied persons [22]. The connection between experiences of HIV- and disability-related stigma has not been studied in depth and warrants further exploration.

The results reportedd here represent a subset of findings from the Sepo Study, which explored the experiences and perceptions of health equity issues for PWD/HIV+ living in Zambia (for example, access to HIV care, treatment and support), focusing specifically on the dual experiences of disability and HIV[1,2]. The Sepo Study involved interviews with PWD/HIV+ as well as key informants (KIs) working in the fields of HIV and disability. This paper focuses on important findings related to experiences of stigma shared by participants. The original intent of the broader study was neither to focus on stigma nor to offer a narrative approach to these data; nevertheless, an overarching theme of experienced stigma pervaded the dataset.

Participants

We recruited 21 people with disabilities who had become HIV-positive (PWD/HIV+), and 11 key informants (KIs) working in the fields of HIV and disability. Table 1 displays pertinent participant characteristics. Just over half of the participants with disabilities had mobility impairments. Participants were generally from a low socioeconomic status. Over half were women and all but one participant was on ART.

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Table 1. Participant characteristics.

https://doi.org/10.1371/journal.pone.0127392.t001

The PWD/HIV+ were recruited in two phases (10 in Phase 1 and the remaining 11 in Phase 2) to allow for interim analysis and refinement of the interview guides in an iterative process. We used a combination of purposive and snowball sampling strategies[44] to interview women and men with a diverse range of impairments (i.e., physical, visual, hearing and intellectual). Snowball sampling was important for recruitment in this study since this is a highly marginalized population who are not visible in their communities. Therefore, creative means were required to identify participants in a sensitive way. Moreover, the principles underlying snowball sampling are consistent with the purposeful recruitment approach, whereby we sought participants with expertise and experience of being a person with a disability who is living with HIV. Participants had to be over 20 years old, and able to speak English, Bemba or Nyanja, three common languages in Zambia. Potential participants learned about the study through dissemination of recruitment information via posters and word-of-mouth within the HIV and disability communities in Lusaka. Potential study participants received study information verbally, in writing or in Braille from our research coordinator. Interviews were conducted primarily at participants’ homes, or at another convenient but private setting within the community.

All key informants were Zambians working in Zambia. For KIs, we purposively sought persons with experiences working in the areas of disability and/or HIV, including representatives from AIDS service organizations, disabled people’s organizations, HIV healthcare providers, as well as policy makers. Most were affiliated with disabled people’s organizations. Of note, several KIs also had mobility impairments and one was hearing impaired. Key informants were identified purposively using the networks of our research team. Potential participants were invited into the study by the Zambian Research Coordinator or the Principal Investigator (SAN). All interviews were conducted in English by a member of the fieldwork team in person except for one interview, which was conducted by the Principal Investigator by telephone. No compensation was provided for this group of participants (KIs) as we were advised by the Zambian members of our team that this incentive was not required.

Data collection procedures

Data collection occurred between August 2010 and June 2011. The Zambia-based fieldwork team conducted all interviews and consisted of a project coordinator, seven fieldworkers (4 men and 3 women including PWD, sign language interpreters and HIV counselors) and two transcriptionists/translators. Fieldworkers were trained in qualitative interviewing techniques. In-depth, semi-structured 60–90 minute interviews were conducted in person, in Nyanja, Bemba, English or Zambian sign language. To ensure confidentiality, interviews were conducted at a location deemed sufficiently private, convenient and acceptable to participants. In two cases, interviews of KIs were conducted by telephone by the study lead (SAN). All interviews were digitally recorded and transcribed into English. Two transcriptionists/translators translated and transcribed all interviews. All transcriptions were quality checked for accuracy by the interviewers. Field notes were taken during and following each interview to record observational or contextual details not captured on the audiotape.

Our Zambian research coordinator matched participants with one of the six local, trained fieldworkers based on pragmatic (e.g., availability, locations) and cultural (e.g., age, sex, ability) considerations. Two of the fieldworkers were women with disabilities, two were HIV counselors, and two were certified Zambian sign language interpreters. All interviews with people with disabilities were conducted in person and in English, Nyanja, Bemba or Zambian sign language according to the preference of the participant. Interviews with participants who were deaf or hard-of-hearing were conducted in Zambian sign language with the fieldworker simultaneously verbalizing the comments of both the interviewer and participant to audio record the exchange. This process enhanced confidentiality by avoiding the need to engage a third person in the interview to interpret. Compensation was provided to the PWD participants.

The interview guide for PWD/HIV+ was designed to capture participants’ experiences regarding: (a) the intersectional nature of life with a disability and HIV; (b) issues of equity, inclusion and discrimination: (c) access to HIV care and treatment; and (d) government, NGO and community responses. Interviews with the KIs were designed to elicit their perspectives regarding the needs of PWD/HIV+, existing services, perceived obstacles (from individual to structural levels), and opportunities for improving health equity for this population.

Participants were assigned unique alphanumeric identifiers and personal details were removed to safeguard their identities.

Data analysis

Data were analyzed using a collaborative, multi-phase process[45]. A subset of the larger Sepo Study project team first developed and piloted a coding framework based on concepts derived inductively from the interviews. Each transcript was then coded by two members of the research team and entered into a data organization software programme (NVivo 8.0). For the analysis in this paper, the lead authors reviewed specific nodes related to experiences of stigma. Further review of the transcripts was conducted using a narrative analytic approach[24,46–48], looking not only at content but also at the form and tone of stories told. A strategy of multiple readings of the transcripts was adopted[49], plus a constant comparative approach[48] to examine common themes and differences within and across interviews. We interrogated the dataset in terms of how interviewees positioned themselves in relation to reported events, in relation to others and in relation to themselves—not in static terms but as fluid, interactive and dialogic accounts [50]. Reflexivity was a priority and practice used throughout the study to enable the thoughtful engagement of our diverse team members. Epistemologically, we interpreted the interviews as a co-construction between interviewee and interviewer, adopting a social constructionist stance[51].

Techniques for ensuring analytic rigour included questioning, checking and theorizing[51]. By using multiple analysts with experience in different methodological approaches and theoretical traditions, alternative explanations were explored[51,52]. Importantly, authors sought to identify and consider the influence of their own social locations and experiences vis-à-vis life in Zambia, ability/disability, stigmatization and other planes of advantage/disadvantage throughout analysis. Other techniques for promoting rigour included accuracy checks, maintaining an audit trail of methodological decision-making, and discussing preliminary results with various knowledge users to ensure relevance and credibility[46,48,51–53].

Stories of stigma in the clinical encounter

Participants from both the PWD/HIV+ and KI groups offered numerous examples of stigma experienced during clinical encounters while seeking care and treatment for HIV. The negative experiences offered by participants were seen as directly contributing to negative health outcomes for PWD/HIV+. As one participant commented:

I remember one cousin who was positive died because of stigma.

(P2-01-PWD)

Many participants spoke about how they were seen as ‘other’ and ‘less than human’ by HCPs, both during testing for HIV and when seeking treatment. Becoming HIV-positive was seen as evidence that the PWD had engaged in sexual activity, which ran counter to prevailing assumptions that PWD are asexual. Further, living with disabilities meant it was harder to access information about HIV. As one participant commented:

Some of this maybe is cultural or social beliefs around disability and sexuality. I think a lot of people don’t think that people with disabilities are sexual people. So, transmission can happen and sadly it’s too late. So there’s…not even an awareness that everybody needs [HIV prevention] information

(P2-16-KI)

HCPs were described as commonly holding the same negative attitudes/stereotypes as the general population concerning the sexuality of disabled persons. Participants recounted that HCPs frequently expressed surprise when a PWD sought HIV care:

…the doctor was surprised at me. He had laughed at me saying, “Can you also have HIV?” I then answered him that, “Doctor, I’m human. I also have the same feelings that you have. It’s only that the legs are the ones that differentiate us”…Even there in the room, they laughed. They didn’t treat me to say this person is also human, she can have, no. Until at last they tested me…But I had told them that…a lot of disabled people come to the hospitals. You discourage us…that’s not how it’s supposed to be. A disease that an able-bodied person can have, even me I can have it.

(P1-07-PWD)

In this account, the participant experienced the additional burden of convincing HCPs of her need for help. Participants described sometimes needing positive test results to persuade HCPs that they were in the ‘right’ clinic.

This experience was not confined to PWD seeking HIV services. Similar stigmatizing encounters were recounted surrounding pregnancy and disability. This lends further support to the assertion that the negative experiences in the clinical encounter stem from commonly held assumptions regarding the sexuality of PWD and is one of the insights of stigma related to disability without the presence of HIV. One participant recounted:

…sometimes even the medical personnel there, they say negative things about PWD, who are found in certain situations like having HIV, or if it’s for us women, if you are pregnant, and maybe it’s time for you to go for antenatal [care] or to give birth. Some of the comments that they make may make someone who is in that group too shy from accessing those services, and instead, die quietly in the home for fear that I’ll be victimized.

(P2-26-KI)

The image of PWD preferring “to die quietly at home” rather than be subjected to the negative attitudes of HCPs is powerful. Here stigma is enacted in a space of care and with devastating consequences. The link between stigma and mortality and access to care acts as an urgent call upon the listener.

Participants told how such experiences of marginalization reinforce the sense that they are perceived differently from other patients seeking care. Participants repeatedly referred to being treated as “less than human”. The lesser status afforded to PWD was also exemplified by a KI who was an able-bodied HCP, who described PWD as follows:

They are vulnerable people who need our support, who need our help. And more information should be given to them, to understand at their own level of learning…PWD are, they are just like young children. I mean in some other ways, I may be wrong, but young children who need very much help…

(P2-19-KI)

Despite good intentions, this participant uses othering language (e.g. using “young children” to describe PWD). He later refers to PWD/HIV+ as “helpless”, which perpetuates stereotypes of victimhood[55]. Such accounts can be interpreted as a form of ambivalence towards working with PWD on equal footing.

While participants cited many instances where they felt marginalized during clinical encounters, they also provided rich and compelling descriptions of confronting the gaze of others while waiting in the queue for HIV services.

Stories from the queue for HIV services

Participants who were PWD described their journeys to seek health services as difficult and disturbing. How they physically reached their local clinics depended partly on their impairments. For example, those experiencing blindness often required help from others to travel to the clinic, especially if vision loss was recent. Participants who were deaf were able to make their way independently. If they experienced mobility impairments, the need for assistance was related to the severity of the impairment. But the physical obstacles encountered on the way to accessing HIV services paled in comparison with the psychosocial burdens described.

One of the primary places where unwanted disclosure of HIV status was enacted was in clinic queues for HIV treatment. It was in these lines awaiting services that those with visible signs of disability were mocked and where othering began. As one participant recounted:

…when one goes at the health center to collect those medicines, the people there…the so-called able-bodied, they pass comments, “Look at that one. He’s disabled, at the same time HIV-positive. He doesn’t even feel sorry for himself. If it was me…I wish maybe I die”.

(P2-07-PWD)

Several PWD/HIV+ described the uncomfortable feeling of being singled out because of their visible impairments.

When you go to collect medicine, they stare a lot at you. When they call your name, they see you getting up with a walking stick, they stare at you until you get in…every time I’m walking like that, I tend to think that they obviously remain talking about me. Since in a situation where you’re a lot, maybe 100 [people], and I’m the only disabled.

(P2-08-PWD)

As occurred in their accounts of interacting with HCPs, such stigmatizing experiences in the queue can have important health consequences. Again, people told of considering foregoing ART rather than being subjected to the taunts of others:

On the queue again, your friends [are] laughing at you to an extent of not even going there sometimes, thinking, “Ah! That day they laughed at me, today I should just stay [home]”. They do laugh, “Eh, even the disabled are found here?” Sometimes therefore you feel shy. Let me just stay home.

(P2-13-PWD)

Because everyone must queue up to access HIV services, this amounts to a public ‘outing’ for PWD as sexual persons, which runs counter to the prevailing discourse of asexuality surrounding disability. In addition to stigma related to HIV generally[16,20], people with visible impairments appear to experience a double burden of stigma by virtue of their status as disabled. The implication that having a double burden is too much reflects in part a limited capacity to cope in the wider precarious context of many poorer Zambians. In the pecking order of the queue, able-bodied persons seeking HIV services may be seen as telling damaging stories about PWD/HIV+ in order to demonstrate that they are like everyone else.

Some PWD/HIV+ also noted that the public setting of the clinic queue meant that passersby could see them seeking HIV care, leading to disclosure within the community. As one participant stated:

… there’s one neighbour who saw me when I went to get medicine … it seems like she publishes the information. Nowadays I don’t even sit outside to chat. I feel that when they are sitting there, obviously it’s me they are talking about.

(P2-11-PWD)

This suggests that the act of seeking care presents a special danger for PWD in terms of their social identity. The gossip that ensued once participants were identified as seeking HIV services was described as spilling out into the social world beyond the clinic. In this way, they told how their identities became discreditable, under the gaze of others.

Stories of stigma within the community

Beyond the clinical encounter and the queue for HIV services, participants also described negative attitudes from those within the broader community, including their social circles of family and friends. Their accounts indicate that for PWD/HIV+, stigma pervades most aspects of their lives.

Once their HIV status was known to others within the community, participants told of encountering very negative attitudes. One PWD recounted:

I and my spouse are members of the [disabled people’s organization]. So people think that maybe my wife is a prostitute [because she is HIV+]. I don’t think she is a prostitute. I have kept this information to myself. There is too much stigma saying that ‘Have you seen that one sitting there? He is positive. He is HIV-positive.’

(P2-01-PWD)

This is a further instance of othering talk whereby the person who contracted HIV is assumed to be engaging in what is perceived to be improper sexual behavior (colloquially referred to as ‘prostitution’), and that this is the explanation offered for why PWD might become HIV +. They are other from those who engage in this talk. Participants repeatedly offered instances where they felt that others saw them as not human.

So they keep a distance from you like that, they don’t count you as a person when they see that you’re HIV-positive and then you’re disabled. They begin gossiping about you, even the neighbours.

(P2-15-PWD)

Disclosure as HIV-positive also had implications for participants’ relations with their families, with some reporting a lack of support from family members (for child rearing, employment). A participant cited estrangement from family members resulting from HIV diagnosis as follows:

Now my blood brother is a thorn in my flesh. He despises me and…he has never visited me from the time he heard about that [HIV], even when I send letters saying please come and pay me a visit.

(P2-01-PWD).

Evidence of othering experienced in the community included participants overhearing able-bodied people claim they (PWD/HIV+) were ‘better off dead’.

No, we don’t feel good because what they normally say is offending. They say, “This person, she is disabled and she adds on this [HIV] disease….the doctor that gives her medication, if only he could give her one for killing her.”

(P2-11-PWD)

These findings illustrate the ways in which HIV and disability-related stigma was experienced not only in the clinic setting but also throughout participants’ wider communities. The stigmatizing attitudes of others had implications not only for their social relations with family, friends and community members, but it also affected their opportunities to make a living. While work experiences of PWD/HIV+ are the topic of another paper [54], it is important to mention here that many of the participants recounted finding most, if not all, avenues for earning a living closed to them once their HIV status became known. Many resorted to begging because no other work was available. Their accounts offer tangible and extreme examples of deprivation of opportunity.

Accounts of internalized stigma

Surrounded as they were by this othering talk—in the clinical encounter, in the queue, in the broader community—it is unsurprising that some participants appeared to internalize stigmatizing attitudes in their accounts. One participant with a mobility impairment commented,

Things have changed. When I’m walking, I do despise myself sometimes. I despise myself.

(P2-13-PWD)

Such negative self-perceptions can have important consequences, including suicidal thoughts:

…it was very difficult for me with those able-bodied people, because you know, my situation being a disabled and also getting HIV/AIDS. If someone laughs at me, it didn’t feel as if I was a person. I even came to the extent sometime to…feel that I should just get out of this world and maybe be a dead person, so that they don’t intimidate me in this way.

(P2-10-PWD)

Here we have come full-circle, whereby the reluctance to attend clinic occurs when the PWD/HIV+ becomes other to themselves, internalizing the prevailing attitudes, until they find the burden of resistance too great. Resigning from the clinic may be one form of internalized stigma, but there are other ways in which PWD/HIV+ take up othering attitudes. One participant recounted blaming himself for becoming HIV-positive:

I’m regretting because, what caused you to be in that state?…I was the one doing it, yes. Going into taverns, doing whatever…

(P2-07-PWD)

Another participant summed up this experience eloquently:

The problem which [we] sometimes face was the stigma we had amongst ourselves…amongst we PWD. Because some were thinking a disabled person cannot be infected with the virus. And that myth has carried a lot of us in, they have been buried today and they have died because all they’ve been thinking to say was HIV is for people who are able to do and… for example those who are sex workers.

(P2-14-PWD)

These participants’ accounts demonstrate how some internalize the negative attitudes encountered both inside and outside clinics. They talked about how hard it was to accept their own HIV diagnosis when they were already disabled. This uptake by PWD/HIV+ of the prevailing societal master narrative could be interpreted as an example of infiltrated consciousness, as described by Nelson.

However, within a single interview, such accounts are often paired with competing narratives that resist the negative accounts imposed (from within and without). These counter-stories serve to resist the damaging stories told about them by others and to construct a positive identity for themselves[8,56].

Counter-stories: resisting the stigmatizing master narrative

While participants described an often stigmatizing social terrain, we were struck by how accounts of negative othering were often juxtaposed with commentary demonstrating resistance to these attitudes. While participants described being treated as less than human, they also used their stories to portray themselves as worthy social actors[39,56].

I have my inherent rights and we need to be on the same level with others. Those that are [HIV]-positive and negative, they are all human. For instance, when we are in the workshop we are all learning whether one is [HIV]-negative or positive. There is a right for us to be equal.

(P2-01-PWD)

Both able-bodied and disabled persons with HIV were sometimes integrated within these workshops focused on managing HIV. Such settings were described by PWD as opportunities for interacting in positive ways with their able-bodied counterparts. This use of the able-bodied person living with HIV as a way to seek acceptance was offered in a number of accounts, as if to emphasize for the listener the shared experiences of able-bodied and disabled persons alike. If both can contract HIV, how different can PWD be? An opportunity to dissolve the distinction between self and other presents itself.

Such positive stories counteract the prevailing master narrative of spoiled identity[29]experienced by the PWD in our study, and demonstrate opportunities to reach out to others within the community. While some able-bodied persons with HIV might stigmatize them, instances of respect were offered:

…. there are able-bodied people but with HIV/AIDS. Some are…even admiring the situation that I’m in. Like, I’m renting a home, whereby I’m only a woman, with HIV/AIDS and with a disability. But I could [do] everything. Today I could do everything rather than someone who’s able-bodied and has HIV/AIDS. They are always complaining…I even encourage them to say, what of me who’s disabled and HIV/AIDS? I’m your example…“What of my sister who’s a disabled person and has got HIV/AIDS? What of me? I have only HIV/AIDS, I’m not disabled.”Really, I do encourage many of them in the community.

(P2-10-PWD)

By portraying herself as a positive role model, this participant demonstrates how she can be an inspiration to both able-bodied persons living with HIV as well as PWD. This embracing of a positive identity, not only as a fellow human being, but one who extends herself by offering compassion to others in need was demonstrated in numerous counter-stories from participants. These counter-stories serve as more than a buffer against stigmatizing attitudes; they provide opportunities for demonstrating agency and generosity[4] in the face of highly negative attitudes, although they also simultaneously carry the burden of working harder. The counter-stories act as a leveling device, demonstrating that some PWD/HIV+ are accepted and actively working to combat stigma and misunderstanding.

With my family members who have not understood my situation, I always emphasize to them, “Look, being a human being, I have to face a lot of challenges. And one of the challenges is HIV/AIDS, which is a pandemic in every part of the world. And I cannot be spared that because, being a human, I pass through frustrations, through peer pressure and everything like that”…How my infection came, to them, it does not matter. All what matters is the shame they have found in me. So I always emphasize to them, “At least me with or without the virus, I’ll still be the same person you knew before. I’ll still not change. I’ll be disabled, but…I have to carry on with my status so that…if one of you may come in a situation I’m in, I’ll be able to understand you and maybe even giving you words of encouragement.”

(P2-14-PWD)

This is the language of courage and serves as a message to those in her social circle that her family members are not alone, but that there is an opportunity of belonging together[57,58].

The KIs who were also PWD not only drew on their experiences of providing services to PWD in a broader context, but likewise drew on their own experiences of being stigmatized. A KI with experiences of disability commented:

What the community should know is we are human beings. The fact that we have disabilities does not make us maybe special or does not make us not have feelings. Because if we can eat, if we can cry, then we can also have sex. And if we can have sex, we can have the consequences of sex. It’s either a pregnancy or HIV/AIDS, if it’s not protected…But the response, like what I’ve known personally, it’s not good. Yeah the communities…sometimes they even become violent, especially the family!

(P2-26-KI)

As a PWD, she challenges the prevailing master narrative concerning the presumed asexuality of PWD, arguing instead for recognition of the common humanity between able-bodied and non-able-bodied persons. She also exposes a pattern of violence which women and other vulnerable groups are more likely to experience.

Another form of counter-story uses the language of human rights to resist the kind of discrimination participants recounted. With respect to access to medical care one PWD/HIV+ person stated:

I can say as a deaf [person] who has got a virus and then someone who is able-bodied, we have the same right even accessing medical support. It is my right as a deaf person to have a sign language interpreter in hospital for good communication … As a deaf person if I meet a medical staff it is very difficult for me to access information.

(P2-01-PWD).

This offers HCPs constructive advice and a way forward for enhancing the quality of care provided to PWD/HIV+.

The participants’ counter-stories serve the function of advising the listener on ‘what ought to happen’[5] and offer moral arguments for why this situation must change[8]. They also offer examples of what is working currently, and this has to do with recognition of PWD as familiar, not other[57]. The counter-stories offer the connection of common humanity between PWD and their able-bodied counterparts[59].

…some people this side [of the clinic] have started knowing me. At times when I’m late, they squeeze me a little[in the queue]. They put me somewhere in front, so that I can go fast. That’s what has caused me not to leave, because they’ve started getting used to me…I’ve started getting used to those people… they know you, and will greet you. Now with new people, maybe you’ll be there just alone as though you are lost.

(P2-08-PWD)

This recognition is not simply an abstraction, but translates into real-world consequences for PWD, altering their lived experiences of the queue and medical care. But the transient and idiosyncratic quality of this recognition is likewise captured in this account. If you end up on the ‘wrong side’ of the clinic, you are back to being marginalized, confronting the master narrative yet again. The wording “you are lost” speaks to the profound impact lack of recognition has, with implications for identity as well as care provision.

Finally, both PWD/HIV+ and KI participants spoke about the power/importance of PWD supporting one another and being agents of change in their own lives.

….at least we [can] have our own centers, as disabled people. There, things will be easy for us … We need our own centers where we can get medicine freely…maybe if we fight for a center where we can get the medicine, those people who will come after us, they’ll be using the same center.

(P2-07-PWD)

Taken together, the counter-stories offered by participants can be interpreted as accounts of resisting the negative stories told about them by able-bodied persons. They indicate that PWD/HIV+ can and do portray themselves positively and as fellow citizens deserving of care and respect. They also point to concrete ways in which conditions for PWD/HIV+ can be improved, and they frame themselves as agents of change. Their accounts are aimed at PWD/HIV+ but in telling them they are not only addressing themselves but also others who are outside their group. The counter-stories offer resistance by repudiating and contesting the master narrative [8].

Conclusions

The advent of ART in Southern Africa holds the promise of making the experience of HIV approximate that of living with a chronic condition. However, this potential can only be realized when all persons living with HIV are given equitable access to care. The experiences outlined by our participants indicate that stigma importantly affects the ways in which PWD/HIV+ are able to manage their health conditions. As we and other researchers have shown, stigmatized individuals are more likely to feel ashamed, hide their HIV status, and discontinue ART, which may not only result in tragic consequences for the individual, but a greater likelihood of transmission of HIV into the broader community (including drug-resistant strains)[20]. At the practice level, stigmatization has implications for access to healthcare services, quality of life and, ultimately, survival[18]. While PWD directly experience stigma, the consequences go beyond these individuals into wider society. At a policy level, the global health community’s goal of zero new HIV infections and zero HIV-related deaths will be difficult to achieve without addressing the constraints on care encountered by PWD/HIV+.

Levinas argued for the importance of recognizing the sovereignty and dignity of individuals while recognizing our connections and obligations to them[57]. He asserted that it becomes ‘permissible’ for individuals to treat other people badly when they are seen as wholly other to themselves, and when they fail to recognize the common humanity between themselves and others. This is not unique to the Zambian context, but is a recurrent theme through the history of humanity and occurs as commonly in high-income as low-income settings. Conversely, once we recognize the other in ourselves, we have a moral obligation to them. The counter-stories offered by the participants in this study serve as such a moral hailing[4] to able-bodied persons to see PWD as equals.