World Journal of AIDS, 2012, 2, 174-182 Published Online September 2012 ( 1
Walking Corpses and Kindly Neighbours: Retrospective
Accounts of AIDS Stigma in Western Uganda
Amy Kaler1, Arif Alibhai1, Walter Kipp1, Tom Rubaale2, Joseph Kon d e - Lu l e3
1University of Alberta, Edmonton, Canada; 2Kabarole District Health Authority, Kabarole, Uganda; 3Makerere University School of
Public Health, Kampala, Uganda.
Received April 19th, 2012; revised May 31st, 2012; accepted June 6th, 2012
Stigma has been of tremendous concern in the AIDS epidemic. In this paper we investigate reported experiences of
stigma in western Uganda, as related by coresidents treatment partners (TPs) of people receiving treatment through a
community-based treatment programme. A survey (n = 110) and open- ended interviews (n = 30) were used. We found
that while stigma persists, it is balanced by kindness and sympathy expressed by relatives and neighbours. Stigma ex-
periences involve isolation and gossip, rather than harassment or violence. We argue that the persistence of isolating
behavior may be related to 1) practical concerns about avoiding requests for assistance coming from families of people
with AIDS; and 2) the perception that people with AIDS are “walking corpses”, in a liminal state between life and death.
The perception of AIDS as a death sentence appears to be a stronger driver of stigma than perceptions of sexual misbe-
haviour or promiscuity in the acquisition of AIDS. We argue that treatment has the potential to reduce stigma because it
permits a repeal of this perceived death sentence.
Keywords: Stigma; Antiretroviral Treatment; Uganda; Community; Household
1. Introduction
Since the beginning of the global AIDS epidemic, stigma
has been of tremendous concern. AIDS stigma has been
referred to as the “third epidemic”, a social plague fol-
lowing the biomedical epidemics of HIV infection and
then AIDS sickness. Stigma has been posited as the
cause of harassment, isolation and demoralization of
people with AIDS, and as a barrier preventing people at
risk from getting tested for HIV or accessing AIDS
treatments (though see [1] for a dissenting view of stigma
as a major impediment to treatment1).
In the international media, shocking incidents like the
murder of Gugu Dhlamini suggest that stigma looms
large. In a widely cited 2006 piece for the New York
Times, Tina Rosenberg claimed that stigma kept people
from protecting themselves against HIV:
Mothers sometimes reject nevirapine. People decline
AIDS tests. Some sick people refuse to take free antiret-
rovirals. Some orphans will starveeven though help is
availablerather than make the shameful admission that
their parents died of AIDS. And of course, millions of
people who know better continue to risk their lives every
time they have sex [2], (see also [3]).
Official pronouncements at all levels also emphasize
the centrality of stigma. For example, in the lead up to
World AIDS Day in 2002, Peter Piot sounded the anti-
stigma note which characterized many of his official
pronouncements as head of UNAIDS: that
Discrimination and stigma continue to stand as barri-
ers. … Stigma harms. It silences individuals and com-
munities, saps their strength, increases their vulnerabil-
ity, isolates people and deprives them of care of support.
We must break down these barriers or the epidemic will
have no chance of being pushed back [4].
Ban Ki Moon, the Secretary Gen eral of the United Na-
tions, devoted his address at the 2008 World AIDS Con-
ference to “the stigma factor”. Moon argued that
Stigma remains the single most important barrier to
public action. It is a main reason why too many people
are afraid to see a doctor to determine whether they have
the disease, or to seek treatment if so. It helps make AIDS
the silent killer, because people fear the social disgrace
of speaking about it, or taking easily available precau-
tions. Stigma is a chief reason why the AIDS epidemic
continues to devastate societies around the world [5].
1Interestingly, when administrators of African AIDS NGOs were asked
to list the three most important challenges to their prevention work,
only 33% placed stigma in the top three [3] (Benotch et al.,2008).
However, this figure was used by the article’s authors to bolster their
claim that “reducing the burden of stigma is critical to fighting the
idemic in A f rica”
Although stigma is routinely presented as a major
challenge, if not the major challenge, the empirical aca-
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Walking Corpses and Kindly Neighbours: Retrospective Accounts of AIDS Stigma in Western Uganda 175
demic literature on AIDS stigma is a bit more equivocal.
While not discounting the enormous impact of stigma on
individuals and societies, the literature suggests that its
prevalence and intensity is variable.
Most discussions of AIDS stigma start with Goffman’s
definition of stigma as “spoiled identity”, whereby indi-
viduals are “marked” as unworthy or undesirable [6].
Stigma is that which discredits in dividuals, so that others
treat them as different and therefore to be shunned or
treated badly. AIDS is assumed to be a stigmatizing con-
dition, like health conditions such as leprosy and cancer,
because it is life-threatening, infectious, and its modes of
transmission are associated with behaviours already stig-
matized [7-10]. Stigma is enacted through activities su ch
as segregation, avoidance, negative gossip, physical vio-
lence, and emotional repudiation directed at those who
bear the stigma. Fear of stigma leads individu als to avoid
acknowledging their own potentially stigmatizing status,
hence the popularity of the “breaking the silence” motif
in workshops or seminars on AIDS stigma.
While most research focuses on stigma as an individ-
ual-level phenomenon, some researchers have called for
a more “socialized” view of stigma, in which it is con-
ceptualized as an attribute of social situations marked by
inequality and structural violence [11,12]. However, this
alternate understanding of stigma is difficult to translate
into empirical research, because individual perceptions
and beliefs are easier to measure with the conventional
tools of health sociology than are complex and subtle
Most large-scale research also focuses on the perpetra-
tion of stigma—the stigmatizing beliefs held by the
“general population”—rather than the experience of be-
ing stigmatized, so that it is also impossible to difficult to
determine the extent to which stig ma throws up obstacles
in the liv es of those who are HIV-positive. Th is research
typically takes the form of asking respondents to indicate
agreement or disagreement with a series of normative
statements (e.g. “People with AIDS should be isolated in
particular places”) or to say what they would do in hy-
pothetical situations (e.g. “Would you buy a tomato from
someone with AIDS?”). While such results can be easily
correlated with variables such as gender, age, or religion,
their value as predictors of the damage actually done by
stigma, as experienced by the bearers of that stigma, is
unclear. Examples of such research on stigma in high-
prevalence African communities include [13-25]. These
authors variously conclude that stigma is multidimen-
sional, that stigmatizing attitudes and beliefs are un-
evenly distributed within populations, and that shame,
blame and aversion are the most common expressions of
Nyblade et al. [23] is fairly representative of this re-
search. This large study involved 730 interviews and
focus groups in Ethiopia, Tanzania and Zambia, and
concluded that stigmatization of people with AIDS was
pervasive and was linked to social norms surrounding
sex. The study found that sympathy and compassion of-
ten coexisted with stigmatizing attitudes or behaviours,
and more extensive and accurate discussion of AIDS as
well as educational programming targeting stigma were
necessary. However, such interventions have had only
modest success [26,27].
This current study, by contrast, builds on the limited
number of qualitative studies which have examined the
experience of stigma as narrated by the people who are
presumed to be vulnerable to it. While these studies are
small-scale and usually not quan tifiable, they suggest the
variability and complexity of stigma experiences among
different communities. Chimwaza and Watkins [28],
based on a study of 12 households affected by AIDS in
rural South Africa, found that people in these households
perceived themselves as having been targets of stigma by
their neighbours, both because of the common attribution
of sexual promiscuity to people with AIDS and because
of their household’s descent into poverty following the
loss of breadwinners. Thomas concurred in her study of
14 solicited diaries from people with AIDS or their care-
takers in northern Namibia. She found that “the stigma
attached to HIV/AIDS can result in considerable in-
tra-household tension and breakdown of key social sup-
port networks” [29] (3174). Both [29,30] noted that
stigma appears to grow over the course of the illness, as
it becomes increasingly clear that the illness really is
AIDS and the patient will not recover.
These bleak assessments contrast with Chimwaza and
Watkins, who spoke with 15 caregivers for people with
AIDS in rural Malawi. While respondents were burdened
by tremendous poverty and in some cases a reluctance to
acknowledge AIDS as the cause of sickness, they also
received sympathy and support from their neighbours, in
the form of visits, prayers, or material contributions. The
authors write that “there was little evidence that either
patients or caregivers were stigmatized… friends and
relatives provided moral and social support to the pa-
tients by sitting with them and cheering them up, and to
the caregiver by sympathizing with her burdens” [28]
(806). In the same vein, and of great relevance to this
study, Kipp et al.’s work with caregiver s for people w ith
AIDS and health volunteers in Kabarole District in
Uganda found that “the attitude towards AIDS patients
by relatives and friends has changed from highly stigma-
tizing to more understanding and sympathetic… nei-
ghbours show love and concern by coming to visit and
sometimes pray with the patients” [31] (10).
2. Methods
This study is based on surveys and interviews with
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Walking Corpses and Kindly Neighbours: Retrospective Accounts of AIDS Stigma in Western Uganda
treatment partners (TPs) of people who were receiving
antiretroviral treatment through a community-based dis-
tribution programme in Kabarole, western Uganda. The
survey component was carried out with all co-resident
TPs—that is, not the patients themselves, but their spouses,
parents, children, and siblings, who lived together with
the patient. The patients had begun treatment between
February and November 2006, and their TPs were sur-
veyed roughly 14 months after their patient had begun
treatment. At the time of writing, 110 out of 136 coresi-
dent TPs2 had been surveyed. Ethical clearance for this
study was received from the University of Alberta.
The first author chose every sixth name from a list of
all coresident TPs, and then by added and substituted
names so that the interview sample approximated the
survey population as closely as possible, with respect to
genders, ages, and relationships to the client. The inter-
views were conducted in March and April 2008 in TPs’
homes by two experienced female interviewers, carried
out in either Rutooro or Rukiga, depending on the TP’s
preference, and taped, translated and transcribed in
Uganda. Interview transcripts were analyzed in Canada
by the first author, using N*Vivo software. Thirty such
interviews were completed, and the first author was pre-
sent for roughly a third of them.
The survey population and the interview sample had a
definite feminine skew, as 64% of the co-resident TPs
were women. They had a variety of relationships to their
patients, the most common of which were child TP/par-
ent patient3 (39%) and spouse TP/spouse patient (25%),
with the rest being siblings, aunts/uncles and in-laws.
Almost all the TPs had been caregivers for their patient
during the worst days of AIDS sicknesses, to the extent
that “TP” and “caregiver” were virtually synonymous4.
In the text, TPs are referred to using randomly generated
numbers in order to preserve confidentiality.
3. Setting
The part of Uganda in which Kabarole District is lo-
cated—near the border, west of Lake Victoria—was the
first region to be hit by the AIDS epidemic, beginning
probably in the late 1970s. The first prevalence study in
Kabarole, carried out between 1991 and 1993, found
prevalence at an tenatal clinics in the district ranged from
a high of 28% in urban clinics, to a low of 10% in rural
ones [32,33]. In 1995, a random sample of 1036 Kaba-
role households found that 34% had a family member
sick, dying or deceased from AIDS [34]. Interviews from
an earlier iteration of this present study also attest to the
persistence of AIDS over the past few decades. For ex-
ample, one married man whose wife is on treatment said
that in his childhood
[People] would say silimu kills badly, it makes people
lose too much weight, and I also used see them. I sa w my
aunt who was sick at home, she lost a lot of weight and
lost her hair and her face shrunk, a woman who had
cheeks [who had been plump]. I thank God I survived
God must have seen my heart [i.e. fulfilled his desire to
survive]. I grew up very scared of that disease [35].
Individual family histories bear out the historical depth
of AIDS in Kabarole, as in the case of one man inter-
viewed in 2008, who had seen his son, his grandson, his
grand-daughter-in-law and his great-grandson all contract
HIV; or another man who was rumoured to have had
three wives die from AIDS, the first one 25 years ago.
Since peaking in the early 1990s, reported prevalence
has decreased in Kabarole to 11.6%, but this is still
higher than the estimated overall prevalence for Uganda
of 6% [36]. Some of this decline is undoubtedly due to
switching from clinic-based sampling to population-
based sampling, but local accounts of the epidemic also
say that AIDS has slowly declined. Given the extent to
which HIV has permeated this community over the last
few decades, it is difficult to sustain the view that HIV is
a curse visited on social deviants. Interviews from [35]
support this idea, as residents of Kabarole said that they
believed stigma had decreased as the more and more
people saw their acquaintances and relatives becoming
At that time [1980s] if a person could get sick of AIDS,
they would laugh at youpoint fingers at you, gossip at
you. They ran away from you, compared to these days.
They even thought it was contagious [through casual
contact]. … Now that it is no longer a secret because it
can catch everyone, today it is me and tomorrow it is
someone else.
Despite the normalization of AIDS in this district ov er
the last three decades, it is still not a socially neutral con-
dition, as we demonstrat e be low.
4. AIDS and Stigma in Kabarole
It is very difficult to generalize ab out the extent or inten-
sity of AIDS stigma in Kabarole. In both the interviews
and the survey, respondents did not report a tremendous
amount of stigma, nor did they report that their commu-
nities were entirely free from it. In the survey, 59% of
respondents said that “some people in their community”
were sympathetic to people with AIDS, compared to
2The other TPs did not reside with the patients—they were usually
neighbours or friends.
3The great majority of these parents were mothers, especially mothers
whose husbands or male partners had died or abandoned them, leaving
the mother in charge of a single-parent household.
4Although almost all TPs had provided care to patients, they were not
necessarily the only caregivers. As [36] demonstrates, in Kabarole
caregiving duties were often shared out among various family mem-
bers, meaning that the impact of caregiving was also shared. 5See [37] for similar speculation about South Africa.
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Walking Corpses and Kindly Neighbours: Retrospective Accounts of AIDS Stigma in Western Uganda 177
33% who said that “most people” were sympathetic and
5% who said that most people were not sympathetic.
However, survey respondents were not asked whether
they themselves had encountered a lack of sympathy as a
result of having AIDS in the households. By contrast, in
the interviews, a more nuanced picture of experiences
with stigma emerges.
Interview respondents were not asked directly about
stigma (a word which, when translated in Rutooro,
means something analogous to “shunning”6). Instead,
they were asked “how did the neighbou rs treat you when
[client] was sick with AIDS?”
The most common response was to state either that
neighbours had been helpful or kind, or that the neigh-
bours had treated the household the same way as they
had even before AIDS struck. These two responses are
amalgamated in Table 1, as indicating the absence of
stigma. Over a quarter said that they had experienced
negative treatment, which almost always took the form of
either isolation or negative gossip. Provocative harass-
ment or violence of any form was never mentioned.
However, the large proportion reporting that no one
knew about the presence of AIDS in their household is
surprising. This figure may reflect three different scenar-
ios: first, AIDS was indeed a successfully-guarded secret;
second, interview respondents did not want to reveal de-
tails of their interactions with neighbours during a pain-
ful period of the household’s history; or third, neighbours
may have known or suspected the presence of AIDS but
were too tactful to express their suspicions to members of
the sick person’s household. We suspect, although cannot
prove, that the third is the most likely, given how widely
recognized the symptom s of AIDS we r e.
5. Ambiguous Kindness of Friends and
Many interview respondents reported acts of great kind-
ness from people around them. While close relatives
came in for criticism for not living up to their response-
bilities (such as husbands or fathers who abandoned the
Table 1. Interview responses: “How did the neighbours be-
have towards you when [client] was sick with AIDS”? (n =
Response Percentage
giving response
The neighbours treated us well OR the
neighbours did not change their behaviour
when the client was sick with AIDS 39%
Client’s AIDS sickness was not known to the
neighbours 28%
The neighbours treated us badly when [client]
was sick with AIDS. 28%
Don’t remember 3%
family), friends and neighbours were generally regarded
positively, as they assisted with money, with in-kind
livelihood support, and with emotional support. One
woman expressed gratitude for the material and emo-
tional help she had received:
R: People helped us who were concerned, they helped
us very m uch .
I: How did they help you?
R: Money, some helped us with money, and others
helped us in thoughts (emotionally). There is somebody
who can help you in thoughts and this can be better than
money. [That person] can advise you and encourage you,
when your heart is about to go somewhere else, because
of their encouragement and advice you come back to
normal and settle to cope in the new state of life; telling
you you can do like this, like this (TP 91).
Indeed, neighbours and friends were often represented
as being very involved in the management of the illness,
offering commentary and often conflicting suggestions as
to what the respondents should do, to the point of intru-
Many women, especially those who had married into
their husbands’ community, said that neighbours were
the ones who first alerted them to the likelihood that their
husband’s illness was AIDS, because they knew the
husband’s personal history better than newly arrived
I: When they saw him get so sick, did they start to
gossip or say things?
R: Eeh, they had things they could say.
I: Okay, how were they taking you and what were they
R: They would talk and say ahh, she [respondent] did
not know his first wife got sick a long time ago, now he
has killed her [i.e. the respondent will die of AIDS like
the first wife]. … even people continued talking that she
[the first wife] used to move with such and such a man
and his wife died of the disease. … That is when I got
annoyed and forced him to go to [the health centre] for
the blood test (TP 91).
Wives were advised variously to stay with their hus-
bands; to leave them; to take them to the hospital, or to
look out for their own health. These were complex deci-
sions with far-reaching consequences. For instance, go-
ing to the hospital offered the possibility of relief, but
doing so would eat up precious resources and the relief
might only be temporary. Seeking out alternate healing
strategies, such as faith healing, was also a gamble.
Leaving a sick husband and returning to the natal home
could mean foregoing any future claims of support on
that husband or his family, as well as violating moral
precepts which proscribed abandoning the helpless.
Staying with the husband, however, not only meant ex-
6Thanks to Peter Rwakilembe for this clarification.
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Walking Corpses and Kindly Neighbours: Retrospective Accounts of AIDS Stigma in Western Uganda
posure to infection if th e couple were still sexu ally active,
but could also make for an awkward situation if the hus-
band died under the wife’s care, in that the wife could be
blamed by her in-laws for not providi7.
However, neighbours’ involvement was not always
welcome. Several women spoke of pressure to take sick
husbands to the hospital, even when the wife herself did
not wish to do so.
Some [neighbours] thought that he was just sick of the
usual fever but of course others know he had this disease.
Some came to us telling us that you peoplethey were
counting us as sick people [i.e. both the husband and the
wife were presumed to be sick, even though only the
husband showed signs of AIDS]—what are you waiting
for? Go to the hospital. Do you want to be bedridden?
Go”. They continued to talk to me like that. Recently he
was having fever, much fever actually, [and] people kept
asking me to tell him to go to the hosp ital. That sickness,
has he forgotten his first wife who died [of AIDS]? Why
cannot he go to the hospital? Then me, I would tell them
now if I have told him to go to the hospital and he refuses,
should I force him? That is what I tell them (TP 60).
6. Keeping Household Aids Private
Despite the low reports of stigma in the survey, interview
respondents unequivocally preferred to keep their client’s
illness a secret, rather than disclose it. One woman de-
scribed this preference forcefully:
R: They [neighbours] don’t know that she was ever
sick, and they cannot think of it.
I: And now do they know?
R: How will they know abou t it? You, do you see th at
anyone can recognize her [that she has AIDS]? Can you
tell she is sick of this disease?
I: No. … [but] suppose they ask you that they have
heard that your daughter is sick.
R: That she is sick? Me, I tell them I do not know. I
ask them if I am a doctor [who could diagnose AIDS]. …
I: But if it happens and someone asks you?
R: Now asking me, how can they even start asking me?
I tell you they cannot ask me at all (TP 79).
Some respondents said their client’s sickness had not
yet manifested itself visibly by the time the client started
on treatment and began to regain health. For instance,
one man said he was glad that his sister’s fits of coughing
were limited to nighttime, so that no one outside their
homestead would hear it and start to speculate. Once the
sickness did become observable, in the form of coughing,
persistent weight loss, or fever, people might begin to
Privacy was also hard to maintain when AIDS struck
over and over again in the same family. One elderly man,
who had lost members of three generations of his family
to AIDS, said that he saw no point in even trying to con-
ceal his grandson’s sickness any more.
I: Was the relationship with others in your community
not spoilt because your grandson had AIDS? Would you
talk to people freely if they asked you what your grand-
son was sick of?
R: Now, this disease had killed his father and his
mother, it had also killed his wife and his child. What
would I hide from people now? That is obvious—they
saw how the father and the mother died, and his wife. …
I: Suppose people asked you what your client was suf-
fering from, can you tell th em the truth that your son an d
daughter- on-law died f rom AIDS?
R: Eeh, I can tell them—what can I hide? People know
how his father died, it is the same way his mother died,
and that is how he will die.
I: Do they ask you questions, what your client is suf-
fering from?
R: They cannot ask me questions, when they know he
is sick of the same disease. (HAART 25)
One woman explained that she was not hesitant to talk
about AIDS in general, but would not acknowledge that
her own daughter was sick. She was clearly ambivalent
about stigma—she would talk about the disease in the
abstract, but not admit a personal connection.
If you ask me about the general HIV/AIDS I can tell
you or explain to you what I know, but I cannot tell you
that my daughter has the disease. I can help you and tell
you to go for testing but I will not tell that I have some-
one in my home with it. I can tell you to go to the hospital
if you are sick and even tell you that those who are going
to the hospital, I see them getting better. That is how I
can help you. But I cannot tell you that my daughter has
the disease too (HAART 74).
Many respondents kept their fears and concerns about
their patient’s deteriorating health to themselves, rather
than let these become general knowledge.
I: As a wife whenever you got such worries did you
tell anyone or you kept everything to yourself?
R: I kept everything to myself as people also have
their problems and worries, why then should I make
them carry my burden? I didn’t tell any person.
I: Why ?
R: Though you tell [some] people, others will start
laughing behind your back. You know people in the vil-
lage… So that was why I kept my secrets to myself—got
worried alone and became happy alone. (HAART 49)
The desire for secrecy extended even to the patient
him or herself. TPs said they did not want their patient to
know what a burden s/he was on the family, and did not
want to share new of the growing family troubles. One
young woman who took care of her aunt when she was
sick said that no one, not even the patient, knew of her
increasing difficulties coping. If her aunt knew how dif-
ficult things were, “she would feel bad and hate herself. I
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Walking Corpses and Kindly Neighbours: Retrospective Accounts of AIDS Stigma in Western Uganda 179
could not do that to he r” ( TP 86).
7. Rejection and Gossip
Although stigma does not appear to be intense, over a
quarter of respondents said they had experienced it.
Some of these incidents took place in the context of on-
going bad blood between families, such that AIDS be-
came yet another item in a longstanding quarrel. For in-
stance, one boy reported that his neighbor would not let
him or his brother come and play with her own children
because the boy’s mother had AIDS. Now that the
mother is improving on drugs, the boy said, the hostile
neighbour switched her criticism of the boy’s mother to
denigration of the mother’s housekeeping and child-
raising skills. Similarly, another woman reported that that
her own experiences with rejection and stigma were con-
ditioned by ongoing disputes about land between her
household and a neighbouring one: the neighbours spread
the word that everyone in the household was going to die,
and that the neighbours would thereby get their hands on
the household’s farmland.
When respondents did mention negativity generated
by AIDS itself, the element of ADIS which figu red most
strongly was its perceived lethality, rather than its modes
of sexual transmission. While individuals might suspect
their spouses of sleeping around, the idea that a person
with AIDS was a “walking corpse” appeared to be a
more perful engine of ostracism than the sexual behav-
iour implied by AIDS infection. One man, for instance,
said that his mother kept her HIV status hidden from all
those except others whom she knew to be HIV positive,
because she did not want other to “backbite her, like that
one is a moving corpse” (TP 86). When asked to describe
the negative attention they had received from friends and
neighbours, respondents predominantly gave examples in
which expected mortality from AIDS was the source of
mockery, avoidance or gossip.
I: Now let’s say, friends and neighbours, how would
they behave towa rds you when your hu sband was sick?
R: The neighbours, for them they would come to see
with their own eyes that we were sick with silimu.
I: They would laugh at you?
R: Yes, that [because] is it going to kill us. (HAART
I: Okay, the neighbours and the relatives, when they
realized that [her husband] is getting so sick, how did
they behave towards you?
R: They were laughing at us, sort of, that the disease is
going to finish [us]. [We] will all die and go away. (TP
8. Avoiding Requests for Help
Some of this reaction to the lethality of AIDS may have
been practical self-protection. AIDS is an expensive ill-
ness, which drained families’ resources and forced them
to seek help from others. One man described at length
how his grandson’s illness strained the resources of his
entire net work:
I: Okay, all those that helped you, like your daughter,
did they find any problems in helping your grandchild?
R: Of course in helping him they found difficulties.
They had to help him, if they didn’t help he would have
died. They went to the hospital, … they had to buy food
while at the hospital. And you know the client can have
appetite for different foods and lose appetite for all of
them the moment he starts eating or before he starts eat-
ing, some [relatives] could buy every food he wanted,
and you can’t count all the money spent on that. All you
can think of is to keep him alive, even if I sell all the land
we have.
I: … Those who were helping you care for him, didn’t
they find it a problem to be with him in the hospital, to
[care for] him, didn’t they find any difficulties?
R: They were seeing problems, but they realized that
this person could die. Had we pulled out and gotten tired
[of providing assistance], he would not be living.
I: … So you could not just leave him to die?
R: Now you have understood it. (TP 25)
Respondents described ex tended period s of time, years
in some cases, of seeking help for the sick person, paying
for transportation and treatment of opportunistic infec-
tions, and losing whatever resources the sick person
might have contributed to the household. As time passed
and the patient’s condition continued to deteriorate, ex-
penditure on the patient seemed increasingly futile8.
By keeping their distance, other families could protect
themselves against appeals for handouts and other assis-
tance. One woman said that she stopped her husband
from telling neighbours about his sickness because she
feared that he would drive people away with what might
be interpreted as requests for assistance:
He tried telling people that he wanted to go to the hos-
pital, but he had no money; but whenever people went
away [were not presen t], I stopped him from telling peo-
ple such things as people also have their own problems.
It is shaming. I told him not to do it again. (HAART ID
7This fear of blame was not just the province of wives, but of all
spouses who were living as “outsiders” in their husband or wife’s natal
community. Below, an excerpt from a man who lived with his wife’s
I: Before [his wife] started on drugs, were you worried about anything?
R: You know, sometimes, but not always, I used to worry [about what
would happen] if she died in my hands when I don’t [belong to] their
home. I would get worried especially being an outsider.
I: Did you share your worries with anyone?
R: I am an old person and on top of that an outsider, so I kept my se-
crets between me andmy God because I have no one else to tell. (TP
8See [29] for the gradual withdrawal of support for people with ongo-
ing illnesses suspected to be AIDS in Namibia.
Copyright © 2012 SciRes. WJA
Walking Corpses and Kindly Neighbours: Retrospective Accounts of AIDS Stigma in Western Uganda
A teenage boy found that the bonds of reciprocity be-
tween his household and their neighbours broke down
once his mother was no longer able to participate in the
lending and borrowing of goods:
I: What was your relationship with your friends and
neighbours like when your mother became sick?
R: People treated us badly. … Whenever we borrowed
certain things, people claimed we were inconsiderate, but
when she got better she tried and availed everything [i.e.
returned everything whic h had been borrow e d] .
I: What did yo u bo rr o w that made people c omplain ?
R: Hoes, pangas.
I: How was the relationship like before mother became
R: It was very good. We had a lot of property—a lot of
things, and I think the neighbours preferred the things to
the owners. I think they pretended to be our friends but I
discovered they were not when our parents got sick and
Daddy died (TP 24)
AIDS in the household also slashed families’ abilities
to fulfill their obligations and responsibilities within re-
ciprocal social networks. One woman described how her
husband’s sickness made friends and neighbours doubt
whether the household would be able to engage in mutu-
ally supportive activities, and began dropping the af-
flicted household from gatherings and group events:
Before he got sick, the relationship between friends
and neighbours was good as we fulfilled all our plans,
but after we became sick, people started to say that we
are sick, why then should be invited or called upon for
any gathering? They started despising us, saying [even if]
they called me or invited me, I had no one to leave at
home to attend to the sick man. (HAART 49)
Other responden ts spoke of having to give up going to
gatherings where social capital is generated and distrib-
uted, such as church services or meetings, when their
patient was too sick to be left alone.
People with HIV were perceived as unwilling to work
hard and invest in the future, attributes which may have
made them less desirable as participants in relationships
based on reciprocity. One woman described her husband
selling off everything they had accumulated:
We had so many assets and he sold them, he sold the
land, saying ah, since I am about to die [I dont need
these things]” … He still has debts, he has not been the
same since he got to know he has the HIV virus.
(HAART 91)
One man, in interviews conducted in 2007 for an ear-
lier iteration of this project, referred to the tendency of
people with AIDS to “eat everything” [i.e. consume all
available resources] rather than “working hard to de-
velop”, because the person with AIDS did not anticipate
living to see the benefits of developing his or her re-
sources (Interview 1). This perceived orientation towards
consumption rather than investment may also contribute
to neighbours’ unwillingness to involve households with
AIDS in projects.
9. “Moving Corpses”: Between Life and
In addition to the practicality of not investing time and
effort in households which might not return it, there may
also have been a deeper, more visceral reaction against
the idea of a “moving corpse”—of death in life—behind
aversion to people with AIDS. Accounts of negative gos-
sip from interviewees focused on the fact of mortality
from AIDS, the inevitability of death, and the juxtapose-
tion of impending death and the afflicted person9. Symp-
toms like persistent diarrhea, fevers, weakness and ex-
cessive coughing were all mentioned by TPs as manifest-
tations of AIDS, and often as diagnostic of the disease.
Yet these unpleasant and often repulsiv e conditions were
absent from TPs’ accounts of others’ reactions. Instead,
the inevitability of death, corporealized by the person
suffering from AIDS, was the dominant motif10.
These reactions call to mind the work of Victor Turner
on liminality, life and death [39]. Turner defined liminal-
ity as the condition of being between two statuses, nei-
ther wholly one thing nor wholly another: in the case of
AIDS, between being alive and being dead. In Turner’s
formulation, liminality is part of the process of ritual
transformation, bracketed by separation from one’s for-
mer status and by reintegration into the community in a
different form—as a full adult, in the case of initiation
rites, or as an ancestral spirit, in the case of funeral rites.
For the “walking corpses” in Kabarole, the liminality
extended from the time that they were identified as hav-
ing HIV, with its connotations of death, to the actual
death of the body.
Now that treatment has become available, re-integra-
tion into society may be an option for those who were
regarded as dead people awaiting their final exit. As pa-
tients recovered, respondents stressed the amazement
(often with religious overtones) among friends and
neighbours that the client had somehow cheated death.
The apparent repeal of the AIDS death sentence received
more attention than any of the more visible manifesta-
tions of treatment, such as physical transformation.
9See also [24] (16) for more examples of the conflation of AIDS and
10In a journalistic piece on euphemisms for AIDS [38], slang terms
which referenced the proximity of death out numbered the terms which
actually described the disease (such as “skinny enough to stand on a
nail”). Euphemisms for AIDS from Africa included “excuse me,
grave”; “sickness that ends in death”; “God is tracking you [i.e. to
bring you to Him]”; “red card [i.e. you are being sent out of the game]”
departure lounge [i.e. awaiting a trip to the grave]” or “go slow [slow
rogress towards death]”.
Copyright © 2012 SciRes. WJA
Walking Corpses and Kindly Neighbours: Retrospective Accounts of AIDS Stigma in Western Uganda 181
When she ga ined h er h ea lth ba ck and stood o n h er feet,
they said… “The person you thought was going to die
today or tomorrow, hasnt she been risen and walking!”
(TP 27).
I: Now when he [husband] got well and strong, what
did they start to say?
R: If they see him now … [silence]
I: Did they continue to go ssip about you?
R: Ah no, they cannot gossip. … They say “We were
prepared to eat the goat, but now it seems difficult” [i.e.
the neighbours were preparing for a funeral meal, but
now that prospect is unlikely]” (HAART 82).
10. Moral Stigma and AIDS
In these accounts, what is not mentioned is as a signifi-
cant as what is. While everyone was certainly aware that
HIV is sexually transmitted, and while everyone could
produce elaborate accounts of sexual networking to ex-
plain the provenance of a particular infection, respon-
dents did not report being shamed or disdained because
the sick person in their house had engaged in improper
sex. AIDS was not described as a moral issue, or retribu-
tion for those wh o vi ol at ed soci al norms.
This lack of moralizing may reflect the generalized
nature of the epidemic in Kabarole. The idea that “any-
one can get AIDS” is prevalent in local talk about the
disease, and while this idea is a staple of standard HIV
prevention rhetoric, it is also close to the truth in this
particular community.
11. Conclusions
From this paper, we draw three conclusions; one empiri-
cal, one theoretical and one programmatic. On an em-
pirical level, we find that AIDS stigma does not appear to
be very intense in this high-prevalence setting. TPs at-
tribute this to the acceptance of AIDS as part of life
which has developed over the last three decades. Where
stigma does exist, it takes the form of isolation and gos-
sip, and appears to be connected more to the perceived
lethality of AIDS than to sexual mores or moral judg-
On a more theoretical level, the most prominent theme
in reported stigma is juxtaposition of life and death—a
person with AIDS is a liminal entity, no longer really
among the living, but not quite yet dead. This liminality
produces psychological discomfort among others, as well
as the more practical response of not investing too much
effort in those who cannot reciprocate. Thus, liminality
thus weakens the channels of social networks through
which help might otherwise flow, and disrupts patterns of
reciprocity and mutual support.
What does this mean for programming? The most
hopeful speculation arising from this study is that treat-
ment may decrease stigma. If stigma is driven by the
presumption of inevitable death, treatment which takes
away that inevitability may undermine the basis of
stigma. Longitudinal research which follows the social
and psychological trajectory of clients and their families
might explore the possibility that treatment initiates a
return to full membership in the co mmunity of th e living.
While treatment cannot cure AIDS, it can remove the
taint of mortality.
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