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A Call For Community:
Two Papers on HIV and AIDS Related
Stigma in Africa
William Rankin, Ph.D., Sean Brennan, M.P.H.,
Ellen Schell, Ph.D., Sally Rankin, Ph.D.
A Document of
Global AIDS Interfaith Alliance (GAIA)
Box 29110
San Francisco, California 94129
U.S.A.
Tel: 415-461-7196
Fax: 415-461-9861
Email: info@thegaia.org
www.thegaia.org
The principal author, William Rankin, Ph.D., gratefully acknowledges the generosity of
the Rockefeller Foundation, which made possible the research and writing for these
papers by way of a residency fellowship at the Rockefeller Center in Bellagio, Italy,
during April and May, 2004.
Additional copies maybe obtained through contacting GAIA at the address above.
Another version of the first paper appeared in Public Library of Science Medicine:
Rankin WW, Brennan S, Schell E, Laviwa J, Rankin SH (2005). The stigma of being
HIV positive in Africa. PLoS Med 2(8):e247.
Photo Above: Wall sign in Malawi (Blake Robinson)
Cover Photo: Village caregivers provide HIV prevention and care in a Malawi village (Mary Thomas)
© Global AIDS Interfaith Alliance 2005
TABLE OF CONTENTS
Paper I: HIV/AIDS-Related Stigma in Africa 1
The Importance of HIV/AIDS-Related Stigma 1
Basic Stigma theory 2
Stigma in Eastern, Central, and Southern Africa 4
The Role of Fear and Internalized Stigma 6
The Basis of HIV/AIDS-Related Stigma in Africa 7
Stigma and Particular Groups in Africa 9
Paper II: Anti-stigma Interventions Needed in Africa 13
Part One: Recommendations for Governments and Civil Society
Four Guidelines for All 13
Recommendations for Societies at the National Level 15
Recommendations for National Governments 16
Recommendations for Empowering People Living with HIV/AIDS 17
Recommendations for Changes in Public Life 18
Recommendations for the Health Sector 19
Considerations for the Conduct of Stigma-Reduction Training 19
Part Two: The Importance of Religious Groups In Mitigating
HIV/AIDS-Related Stigma
Recommendations for Religious Organizations 21
Theological Discussion Guide 24
References 29
Paper I: HIV/AIDS-Related Stigma 1
Paper I: HIV/AIDS-Related Stigma in Africa
It is widely recognized that HIV/AIDS-related stigma is both widespread and a
significant obstacle to the provision of effective care and prevention measures.
Beyond that statement, however, little is certain in terms of how pervasive
HIV/AIDS-related stigma is, what its causes are, what forms it takes and what
steps can be taken to reduce or eliminate it in the many different settings in
which it occurs. Indeed, it is possible that the word stigma itself is inappropriate
or does not cover the full range of negative actions and attitudes that may be
directed towards people living with HIV/AIDS or are otherwise identified with the
disease.
- Panos London
1
Introduction
When the late Jonathan Mann addressed the UN General Assembly in 1987 he
characterized the major phases of an HIV/AIDS epidemic.2
The final phase, after the
initial silent spread of the virus and then the outbreak of physical havoc, was defined by
social reactions to the devastation caused by AIDS. The most problematic of these are
stigmatization and discrimination. Facing up to HIV/AIDS means struggling against the
stigma that, if not ameliorated earlier, becomes—like the disease—most wasting in this
final phase.
By 2000 the urgency of dealing with stigma was re-stated by Dr. Peter Piot,
Executive Director of UNAIDS, when he remarked that it was the most important task in
fighting the global HIV/AIDS epidemic.3
Piot’s insistence on this point bore fruit in the
theme of the 2002-2003 World AIDS Campaign: the reduction of HIV/AIDS-related
stigma and discrimination.
This paper first considers the question of why stigma should be dealt with as a
part of the struggle against HIV/AIDS in Africa. It next describes basic stigma theory
and then it characterizes HIV/AIDS-related stigma, with an emphasis on Eastern, Central,
and Southern Africa, where HIV-1 is prevalent and where infection rates are highest on
the continent. The role of fear and self-stigmatization as well as the basis of HIV/AIDS-
related stigma in Africa are explored, and finally focus is placed on how stigma affects or
is affected by specific groups -- women, children and youth, health care providers,
traditional healers, and religions.
Some women and men have coped with or surmounted the dehumanizing forces
of stigma while affirming themselves, providing wise counsel, or giving service to others
in need. Throughout the paper are glimpses of these heroes in the struggle against
HIV/AIDS-related stigma.
The Importance of HIV/AIDS-Related Stigma
Stigma is of urgent concern because it is both the cause and effect of secrecy and
denial, which in turn are the primary preconditions for rapid HIV transmission.
Paper I: HIV/AIDS-Related Stigma 2
Glimpse of A Hero. “This disease
touches the worst of society’s ills.”
- Thomas Coates, Professor of Infectious
Diseases, UCLA.
Moreover, it adversely affects care for people living with HIV/AIDS (PLWHA), who
frequently become isolated in their communities.
Stigma is emblematic of, and reinforces, attitudes and social structures that set
people against each other and so undermines social cohesion. The un-stigmatized or not-
yet-stigmatized believe themselves to be superior to the people who are targeted.
Stigmatizers blame victims for their behavior, and so may feel reassured about
their own invulnerability to disease, due to their righteous attitudes or behaviors. An
interesting illustration of stigma is the ominous associations we can have with the word
nyambizi (“submarine,”) a term used in Tanzania to refer to a person living with HIV. 4
In
this usage, the PLWHA is stealthy, menacing, deadly. The rest of us, the putatively
innocent, are advised to be wary.
The impact of stigma upon the targeted individual is particularly debilitating.
Even without stigma an enormous and painful struggle may already be taking place
within someone who is seriously ill, and it is important to pause a moment to
acknowledge this. The harm of internalized stigma (self-stigmatization) adds further
misery to a difficult struggle.5
Even without externally enacted stigma against a person who is ill, the onset of
serious illness means essential identity can come under serious attack. A person may
cease to be who one was, instead becoming a person-with-an-illness, or more
devastatingly, an ill-person, a thing in which personhood and illness have fused at the
most basic human level and the self is profoundly changed.
The French philosopher Simone Weil characterized the assault of illness upon the
self in terms of the classical Greek notion of the soul.6
Terrible self-loathing (she used the
term malheur) may seep into the depths of someone living with serious illness. Deep
disgust may be felt against ourselves as ill people and this can destroy our very souls – or
we might say destroy the humane and humanizing self that we believe ourselves most
essentially to be.
It is upon this already serious oppression that illness-related stigma adds its heavy
burden. When a person is targeted by stigma, then perceives it, feels it, and finally
internalizes it, self-stigma is the result. The individual’s outward behaviors may project a
debased inner frame of mind. She or he may isolate or quarantine her/himself and
altogether give up hope. This is a condition of terrible emotional oppression. The loss to
society is considerable. By immobilizing the very people who could credibly speak out
and educate for HIV prevention and
who could care for other PLWHA,
stigma strengthens the likelihood that
HIV incidence will increase and that
many more people will die in despair
and as outcasts.
Basic Stigma Theory
It is widely accepted that self-respect is an essential human good, something we
need in order to live our lives in an affirmative way. This enables an individual to value
the self and to have realistic confidence in the ability to fulfill one’s aspirations.
Generally, we sustain self-respect by having the acceptance and approbation of an
Paper I: HIV/AIDS-Related Stigma 3
Glimpse of A Hero. “No one can
make you feel inferior without your
consent.”
-Eleanor Roosevelt
individual or a group. Self-respect is undermined by stigma and discrimination -- directly
by inducing shame and other self-denigrating feelings within the individual, and
indirectly by weakening or destroying the social support surrounding the targeted person
-- including sometimes the community support needed by their family and survivors.
Erving Goffman’s work on stigma has been the primary point of reference on the
topic since it was published.7
He defines stigma (pl. stigmata) as “an attribute that is
significantly discrediting.” Stigmatizing is typically enacted against a person or group
out of prejudice and it functions in relationships to diminish the person or group being
targeted. Social notions of deviance, or sometimes only difference, mean that the
stigmatized person becomes devalued.
It is helpful to define certain theoretical terms when discussing stigma theory.
“Enacted stigma” directed against a person by others may first be perceived by the target,
then felt, and finally internalized so that in the end the target colludes in her or his own
oppression by self-stigmatization. Internalized discrediting may be experienced as
shame. The term “perceived stigma” has come into recent use in some social scientific
literature. It is apparently meant to be a synonym for “felt stigma,” though careful
comparison of the two terms shows different connotations. Perceived stigma implies a
stigmatized person’s awareness of externally imposed discrediting, whereas felt stigma
implies experiencing the pain of stigma. “Courtesy” stigmatization – Goffman’s term --
occurs when a person or group associated with the target is included within the field of
people being stigmatized.
Recently theoreticians of stigma have analyzed how the stigmatizing process
functions in social structures to subordinate individuals or groups, while reinforcing
hierarchical patterns of privilege.8
In this view, the struggle for privilege entails the
oppression of others through social relations of domination and subordination. To be
effective, interventions aimed at mitigating the causes and effects of HIV/AIDS-related
stigma should accordingly be predicated upon an analysis of how stigma functions to
enhance dominance and subordination in society. That is to say, empowering those
oppressed by stigma while also teaching
respect of all means assisting oppressed
individuals toward self respect, and
working with the targeted to frame a
critique of unjust societal dynamics,
challenging the assumptions and
warrants of privilege, and generally
creating a more just society.
A common example of stigmatization reinforcing hierarchical patterns of
privilege is that of punishment theories of illness causation.9,10,11
These include notions
that an aroused deity, ancestor, or witch brings an illness upon an individual because of
some kind of offense committed by the person. Such ideas buttress tendencies to
stigmatize people living with illness and they serve as explanations and enforcers of
dominance and subordination. They enable communities for whom purity matters (like
some religious groups) to purge the “impure” – people whose illness, “sinfulness,” would
contaminate the whole -- while feeling reassured that their own virtue will protect the
righteous from harm.
Paper I: HIV/AIDS-Related Stigma 4
The social inequalities within religious groups and in the wider social order may
predispose oppressive human relations in general. They may also imply an insufficiency
of functioning and accessible, human rights-based, legal, and policy mechanisms to
protect people subject to stigma and discrimination. From the vantage point of the
stigmatized, on-going supportive counseling and membership in self-help groups is
urgently needed if one is to stand up against such oppression, or perhaps survive it.
Stigma in Eastern, Central, and Southern Africa
HIV/AIDS-related stigma may be more prevalent and potent in African villages
than in urban areas, since many rural settings are underserved by government educational
programs and other sources of information. In villages people rely heavily upon others,
the same families have frequently lived together for several generations, and much is
known about neighbors. Gossip for good or ill can greatly affect social standing.
Moreover, in a village, HIV may be regarded as a disease of foreigners -- strange people
“not like us.”12
Sometimes PLWHA are condemned for having gone outside the
community, where they presumably contracted the virus and then introduced it locally.
Some people with stigmatizing attitudes and behaviors openly and
enthusiastically indulge these – as in the case of certain (but by no means all) religious
leaders who promulgate punishment theories of illness causation.13
Other people who
stigmatize are unconscious of doing so. It is possible, for instance, to find individuals
who state the importance of accepting all people, but who use stigmatizing language to
describe a PLWHA.14
Both stigmatization and respectful caring can occur in the same
community and in the same person. Some African countries have no term for stigma,
which make attempts to raise consciousness a bit more difficult, though usually there are
words meaning discrimination.14
Enacted stigma seems most likely to be directed at a person who is ill when the
illness is thought to result from personal choice, when the illness is progressive and
irreversible, when it is contagious, and when it leads to unappealing physical changes.5
It
is possible that the more patently ill a person is, the more likely she or he will be
stigmatized.
In the close context of family and neighbor in village life, fear of being
stigmatized engenders denial that one is or may be living with HIV. This fear feeds a
culture of silence, as people are reluctant to disclose their sero-status lest they be rejected
or because they have internalized stigma as disempowering shame. Fear of being
stigmatized militates against being counseled, tested, and/or treated for HIV, since in the
villages everyone knows who visits a clinic. Stigma-related fear may inhibit condom use
because the individual may be in denial, or may want to convey falsely that he is not
infected. Fear of stigma may lead a pregnant woman to expose the fetus to increased risk
of viral infection, rather than be tested and receive medications to reduce the infection
risk to the baby.15,16,17
It may cause a mother to expose her infant to HIV through breast
milk, rather than take measures to avoid this and thus arouse suspicions concerning her
sero-status.18,19
Silence, secrecy, and denial are evidenced in newspaper obituaries that
almost always avoid mentioning HIV/AIDS as a cause of death.20
Stigma may limit the quality and amount of care received by a PLWHA, as
neighbors or even family members may refuse to be in the presence of the individual. An
Paper I: HIV/AIDS-Related Stigma 5
Glimpse of A Hero. “It is rather now
that they hold me like an egg. Even before
they didn’t handle me like that. They realized
if they didn’t handle their sister like that, she
would disappear from them.”
- An African woman with HIV who disclosed
her status.33
unfortunate exception to this is stigmatizing caregiver-voyeurs.4
Within a family
discrimination against a PLWHA can entail ostracism, blaming, rejection, and even
abuse. Husbands have beaten and/or abandoned wives thought to be living with HIV,
even though many women contract the virus from their husbands. PLWHA may be
forced to eat alone, may be isolated by family and/or community, or may be
dispossessed.4
(Some individuals, however, are treated well by family and/or neighbors
after their health status is known.) Stigma-related rejection may be abetted by off-putting
behaviors of a person who is sick, frightened, and struggling with oppression and with the
many emotional burdens of having a dreadful illness.
In some areas of considerable
poverty, expending resources on a
PLWHA may be thought wasteful
since the person will die. This is a
serious form of stigmatization. Family
members will be aware that the costs
of caring for a person who is ill could
be considerable, could have lasting
consequences, and could make the
lives of other family members
difficult.21
In subsistence farming
areas, for instance, the illness of one PLWHA can mean that care-giving would use up
any family savings well before the person dies. It means the recognition that she or he
will be become increasingly unproductive, and that caretaking will sooner or later draw
one or more family members away from growing food. In the absence of even a minimal
social safety net (which may have been greatly weakened because of stigmatization in the
village) the whole process is ominous for everyone in the family. The belief that a
PLWHA “will die anyway” can cause a caregiver to give up on the person and believe
that the sooner the person dies, the better. If stigmatization, or the fear of it, becomes
great enough, a family member may move away from the community, either before or
after the death of the PLWHA.
Stigma may result in workplace discrimination or outright removal from a job.4
It
may entail creating scapegoats – presumed deviants or outsiders thought responsible for
introducing HIV to an area. Women, sex workers, and youth -- all groups already
disempowered in society -- are frequently blamed for bringing illness into the family or
community. Courtesy stigma may lead to community disdain for or rejection of one’s
family members and survivors.
Language (“she is an HIV,” “he is a walking corpse,”) conveys stigmatizing
attitudes. Seven categories of stigmatizing terms were found in Zambia to describe a
person living with HIV.14
The words variously connoted deviance, death, physical
limitation, an individual unable to continue the appearance of health, acceptance of a
disease, HIV/AIDS-related symptoms, and care-giving burdens. In a different way, the
limitations of language work against candid discussions of sexuality. In Malawi, for
instance, there is no indigenous word for “wife,” since (it is thought) to speak of one’s
wife is to evoke sexual imagery, which is inappropriate. In the Chichewa dialect of
Bantu -- with English an official language of Malawi -- a circumlocution for “wife” is
Paper I: HIV/AIDS-Related Stigma 6
used: “the mother of my house.”22
Nor is it helpful that in Malawi, for instance, the term
for a sexually transmitted disease, regardless of its origin, is “woman’s disease.”23
The Role of Fear and Internalized Stigma
In anticipation of felt or internalized stigma many people, especially in high HIV
prevalence areas, live with anxiety concerning themselves or a family member being
diagnosed, discovered and then stigmatized as living with HIV.
Fear of stigmatization inhibits people from being tested for HIV, which partly
accounts for the so-far disappointing results in attempts to connect people with free
medications. A 2004 Reuters report from Botswana, for instance, indicates that despite
the many millions of dollars poured into the country by the Merck Foundation and the
Gates Foundation, people still resist being tested (and then treated) for HIV infection.24
Years go by until a person becomes very ill, and she/he only then seeks testing in order to
qualify for treatment. In the meantime new infections are transmitted. A senior
Botswana official believes about 90% of his country’s people do not know their sero-
status. He adds that treatment “is a waste of time if you are not stopping new infections.
It's like trying to mop a floor without turning off the tap." 24
Self-stigma is most potent just after one learns her or his sero-status. If the person
already has low self-esteem, and/or already holds punitive views of HIV infection, and/or
if she or he has an inadequate system of social support, then internalized stigmatization
can be especially devastating. The emotional pain of an assault upon one’s identity may
result in a vicious downward spiral accelerated by fear, despair, paralyzing notions of
fatalism and self-loathing, an incapacity to plan for the future, apprehensions about dying
and death, and finally self-destructive attitudes and behaviors. Against these a person
may urgently struggle for self-respect, hope, and comfort in an agreeable notion of
afterlife.
Self-stigma frequently causes isolation of self from friends, services, and
community; one may strive harder to prove one’s worth; he or she may maintain silence
about his or her health; and the individual may engage in a fierce struggle with fears of
being exposed as a PLWHA. We have heard anecdotally that a common strategy is to
explain visible skin lesions as insect bites or allergies, weight loss as caused by poverty,
and so forth. Such denial and/or deceit of course undermines the integrity of self and of
self-in-relationships.
Greatly impaired because of internalized stigma is the chance a PLWHA will
experience the love all people need or the experience of giving love, which all need as
well. Self-stigma may cause a person to give up on love, or be unavailable, or be
reluctant to open the self to it out of a sense of unworthiness and fear of rejection.4
Added to shame is the guilt some feel when they test positive, due to the possibility that
they have infected others, perhaps including spouse and/or children.
Felt stigma, like the external kind, makes disclosure of sero-status difficult for
PLWHA. Although self-disclosure may be personally empowering, a way to fight back
against stigma and discrimination, it can also be risky since it opens the possibility of
losing relationships with family members and the community. Many Africans do
disclose to some family members or partners -- frequently to a close family member in
the same generation.4
Many men divulge their HIV status to their mothers. Many do not
Paper I: HIV/AIDS-Related Stigma 7
tell their partners, which can of course be dangerous among HIV discordant couples (the
spouse is not living with HIV).
Disclosure by a wife to a husband can be fraught, owing to the dangers of injury
from physical violence and/or abandonment and dispossession by the husband or his
family. Because of this, and because of fears of stigmatization from health care
personnel or the community, many African women tested for HIV during pregnancy do
not return to the test site to find out test results.17
Many testing HIV positive do not want
to be told their test results.
Disclosing to a child is frequently not done, out of fear that the information will
be passed to others in the family or community. Disclosing to a child living with HIV is
especially difficult, though it has been somewhat eased by using memory books, which
are created jointly by a child and usually the mother to record stories and events helping
to preserve images of the family. These provide a circumstance in which serious illness
can be discussed.
The Basis of HIV/AIDS-Related Stigma in Africa
The basis of HIV/AIDS-related stigma in Africa is fear of contagion, particularly
through casual contact, and thus it is powered by inaccurate understandings of HIV
transmission.4
Casual contact theories of transmission seem plausible because these seem
to account for the high prevalence of AIDS-related illnesses. Casual contact fears are
deeply rooted, even among people who presumably know better. They may persist, for
instance, among health care providers, so that working with patients living with HIV may
be very difficult for them. Not infrequently they will stigmatize their patients out of fear
of contagion.
The caregivers in many families of a PLWHA are frequently concerned about
contracting HIV through casual contact.25
Others in the community may refuse to
purchase vegetables or poultry, for instance, from someone living with HIV/AIDS or
even from a spouse or child of the same. In impoverished areas this has a serious impact
upon the family’s economic survival chances. The PLWHA is made to eat alone and is
sometimes secluded in a separate room away from family members.
In African villages, traditional cultural and religious notions of illness-causation
may be deeply rooted.26
Traditions frequently teach that supernatural forces cause certain
types of illness in particular, and such illnesses are strongly associated with stigma.
These include illnesses that deform, infectious diseases where the vector is not
understood, serious illnesses, and instances in which the individual breached a societal
norm. Punishment theories involving the deity or an avenging ancestor or community
member are invoked to explain some illnesses. When witchcraft theories of illness
causation are put forth, or where the illness is attributed to poisoning by presumed
enemies, stigma usually follows.
Since many people living with HIV and their family members visit traditional
healers before or instead of consulting Western health care personnel, traditional attitudes
reinforcing HIV/AIDS-related stigma may be magnified rather than mitigated. Indeed,
some people will not be seen near an organization or institution working on HIV/AIDS,
out of fear of being stigmatized. Many will not seek voluntary counseling and testing
Paper I: HIV/AIDS-Related Stigma 8
(VCT,) or stay after a blood sample is taken to learn test results, or return for treatment,
even if available and free, out of the same fear. Some villages do not want HIV/AIDS
workers in them, for fear of being stigmatized.
Large numbers of African families will not discuss male and female sexual
behaviors in general.27
Talking openly about a sexually transmitted infection (STI) or
STI prevention strategies is very difficult. In the phrase of a conferee at a GAIA training
session in Malawi, “I’m a father myself, and a grandfather for that matter. It is
practically unacceptable to talk about sex in your family, to your children, let alone with
girl children, right? That is a fact.”
In the tightly interwoven structure of African villages, the identity of the
individual is tied to that of the family, the community, and the tribe. Stigma attaching to
one may be generalized to include the courtesy stigmatization of all. At a GAIA stigma-
reduction training conference we heard this from one Malawi conferee: “[HIV/AIDS-
related stigma] is not affecting just the parents but the whole clan as such, or even the
whole village, and that’s why we have a difficult time with [the sick person] being asked
to maybe move out of the place because the whole group of people who are relatives of
this daughter or son, they felt offended after being likened as a relative of the victim. So
this is really what is killing us.”
There is a stigmatizing tendency to associate HIV infection, especially among
women and the young, with promiscuity, which is frequently a synonym for “sinfulness.”
Opprobrium frequently attaches to the “sinner’s” family as well. The mother and father
of a daughter or son living with HIV/AIDS are blamed for having been bad parents. This
comment by a Malawian is typical: “I think the most important thing is it’s sinful. [When
a daughter has AIDS] people are saying she hasn’t been responsible. The main thing is
that she hasn’t been taught to behave…”
The silence throughout society concerning human sexuality works against people
with an STI. These are scapegoated because of issues that cannot be dealt with openly.
For instance, husbands contract HIV through extra-marital associations and then pass the
virus to their wives. The wife becomes stigmatized as a presumed sex worker while the
community is silent about male promiscuity. Nor is silence characteristic of local
communities only. There is speculation that certain Islamic countries may under-report
HIV prevalence due to concerns that the nation as a whole will be stigmatized by other
nations in the world community, or by other nations of predominantly Islamic faith.28
The antithesis of silence is, of course, open discussion of sex and of HIV/AIDS in
particular. Many believe that a chief reason why Uganda was able to reduce HIV
prevalence so impressively is that, with the strong encouragement of the government and
institutions of society, including the religious groups, the people had open, candid
discussions with family, friends, and neighbors about the terrifying phenomenon of
HIV/AIDS.29
This highly successful strategy was based upon community trust, which it
in turn strengthened.
One factor supporting the continuation of stigma-related silence and lack of
public transparency in much of Africa is distrust of western medical theories and western
medicines.30
Some believe western HIV tests will result only in stigma, or that western
medications will kill them. These seem to be warranted assumptions since many who
finally ask for tests and treatment (if available) are by that time quite gravely ill.
Therefore many are reluctant to seek VCT and so live in silence about their concerns,
Paper I: HIV/AIDS-Related Stigma 9
Glimpse of A Hero. “She is my very
sister, so being a brother I find it difficult to
undress her and look at her nakedness when
changing her soaked dresses. It’s like a
taboo for a brother to see the nakedness of
his sister. My older sisters have all gotten
married and gone to live with their
husbands. It has become difficult if not
impossible for them to abandon their marital
duties. I am handy to help my sister despite
all odds. I have smaller sisters who are
however afraid to come close to see their
sick sister.”
- An African young man25
perhaps colluding with the stigmatization of people sicker than they who must have
“sinned” while contracting HIV.
An important datum at this point is that most relatively well-nourished adults
could be living with HIV for several years before developing the visible symptoms of
AIDS-related opportunistic infections. The lack of understanding that one can have and
transmit HIV while appearing healthy, coupled with mistrust of western medicine, has
greatly limited the effectiveness of antiretroviral (ARV) treatment programs.4
This has
meant too few being tested for HIV infection, it has made greatly inhibited the needed
openness of African communities for discussion of all STIs, and it has strengthened the
power of stigma.
The complexity and tenacity of stigma may mean that a sound, effective HIV
prevention strategy could strangely become part of the stigma problem. For instance, the
widely recommended ABC formula (Abstain from sexual contact, Be faithful to one’s
spouse, and if you can’t or won’t, then use Condoms) is of crucial importance for
reducing the number of sex partners and raising the age of sexual debut. But it may
inadvertently abet stigmatization since an HIV infection frequently implies “promiscuity”
or unfaithfulness, both “sins.” 31
Stigma and Particular Groups in Africa
Women: It is widely expected that women will become pregnant and bear
children, and that they will without hesitation fulfill the sexual desires of their
husbands.32
These expectations are supported by the threat of stigma if a woman cannot
or will not comply. The traditional assumptions greatly predispose women to HIV
infection since, in all too many cases, the husbands carry HIV and barrier methods of
disease prevention, such as condoms,
are proscribed, both because they may
reduce the man’s sexual pleasure and
they will likely prevent pregnancy.33
A woman living with HIV may
be doubly stigmatized – as a PLWHA
and as a presumed sex worker. “How
otherwise could my wife become
HIV+?” asks the husband. A double
standard in parts of Africa allows men
to be sexually active with several
women, or be polygamous, while
wives are denied comparable
freedoms.34
Women seeking HIV
information, VCT, prevention of
mother to infant HIV transmission, or
treatment services, may be subjected
to violence by their husbands, whereas men seeking the same services are not nearly so
susceptible to this. Some women are subject to violence if they ask their husbands to be
tested for HIV, or if they refuse a sexual overture, or if they ask their husband to use a
Paper I: HIV/AIDS-Related Stigma 10
Glimpse of A Hero. “What will
happen to my children? Who will they
become?”
- A young Malawi father of a 10-year old
and a 2-year old. His T-cell count was 84 in
June 2003 as he prepared to disclose his
HIV status publicly.
condom. A woman who exhibits the independence needed to protect her health and self-
esteem risks the disapprobation of her family and the community.
Women are frequently unable to take their children from the husband, and so feel
obliged to stay in abusive relationships. Despite overwhelming evidence to the contrary,
women are frequently stigmatized for being the vectors of HIV transmission. (In an
alarming twist, males are sometimes under social pressure to have a high number of
sexual relationships and a large number of children.35
A man risks being stigmatized if he
does not.)
A woman may be dispossessed altogether if her husband believes her to carry
HIV. If her husband should die, her in-laws may blame the widow and seize all her
inherited possessions.23
Whether dispossessed or not, many widows have a difficult
struggle to survive, and to help their children survive.
Older women and young girls providing home-based care to PLWHA are
frequently impoverished, malnourished, exhausted, stigmatized, and isolated. They feel
depressed and ill equipped to provide care. Young girl caregivers frequently drop out of
school due to ridicule related to the PLWHA.4, 23
Children and Youth: Teachers and other adults all too frequently push boys and
girls into sexual activity. This is especially risky for girls who are preyed upon by male
teachers and other men (“sugar daddies.”)36
Resisting this may give rise to scorn against
the child.
Children orphaned by AIDS are usually quite traumatized and have few with
whom to talk about their emotional pain. On top of this may come ridicule and ostracism
from school peers and sometimes from others in the community. Schoolmates may
torment children associated with people living with HIV/AIDS because of stigma.
Teachers may tease them as well. Food may not be shared with such children. A child
living with HIV is particularly
vulnerable to this. Some schools will
not accept, or keep, sero-positive
children.
In Malawi, however, GAIA’s
experience indicates that it is unusual
for family members to discriminate
against surviving AIDS orphans in
terms of nutrition or other aspects
pertaining to physical wellbeing.
Anecdotal reports from other
countries, however, imply that this may change due to increasing numbers of orphans and
very limited food supply. What such orphans experience emotionally due to AIDS-
related stigma has not yet been chronicled.
Health Care Providers: Doctors, clinic officers, nurses, counselors, and laboratory
technicians all have been known to stigmatize PLWHA.4
Some health care personnel
will not treat or even approach a PLWHA. Some act in a condemnatory way toward
PLWHA, and some will not let their children play with the children of a PLWHA.
Paper I: HIV/AIDS-Related Stigma 11
Glimpse of A Hero. “If God is really
punishing people with sickness for their sins,
don’t you think the perpetrators of war,
terrorism, and nuclear destruction would at
least get herpes?”
-Episcopal Bishop Paul Moore
(Cited in Bonneau N (1992) Reflexions sur le
mystere de Dieu et la crise du sida. Eglise Theol.
23:305 (fn.48, at p. 317).
When health care providers stigmatize, or are thought to stigmatize, people will
be reluctant to visit the test center for VCT and treatment, if available.38
This is highly
unfortunate, since VCT is the essential first step in so many stigma-reduction and HIV
prevention and care strategies. Stigma thus blocks the essential first step by the PLWHA
toward living responsibly with HIV. The fear that testers or others in health care may
disclose one’s HIV status is considerable. Gossip is a danger in villages, and where, as
opposed to western urban centers, anonymity is very difficult if not impossible to
guarantee.
Traditional Healers: There are many more traditional healers (sometimes
referred to as “witch doctors”) than western health care providers in Africa, and many of
these are engaged in practices that do not help, and may hinder, the health of PLWHA.30
Some healers inappropriately pronounce people uninfected by HIV, thus adding to denial.
And yet the operating theories of illness causation promoted by healers (witchcraft,
offense against a dead ancestor, breaking of a taboo) are attractive in that they provide
hope of cure, or at least relief, when western notions of HIV/AIDS do not, particularly if
antiretroviral medications are not affordable or otherwise available.
Some attempts are being made by traditional healers, governments, and western
medical people to encourage greater cooperation among all groups.39
The hope is that
eventually traditional healers will provide a strong referral source to western HIV testing
and treatment centers. If this strategy succeeds, it seems reasonable to suppose that the
levels of stigma in villages will decline.
Religions: Some people in Africa believe that traditional social mechanisms once
functioned effectively to deal with sexuality, but that these were wrongly uprooted or
significantly changed by the missionary religions.40
The scope of this paper is not broad
enough to include an analysis or whether western or traditional religions are more
responsible for HIV/AIDS-related stigma.
But it seems fair to say that clergy and other religious leaders are as susceptible as
any to the temptation to exercise power over others. These tendencies are facilitated by
structured inequalities (clergy over
lay, more spiritual over less spiritual,
more morally pure over less so, and
the like.) On this account, religious
groups have a marked inclination to
stigmatize, and discriminatory
attitudes and behaviors against
PLWHA “sinners” are an instance of
this.
Many Christians and Muslims
believe that living with HIV/AIDS
implies promiscuous, or sinful,
behaviors.4,
(“There is the attitude that they deserve it [HIV] because they did not take the
precautions,” we were told by a Malawi minister.) It is thus not surprising that many
PLWHA have been pushed out of religious congregations, or have excluded themselves,
because of discriminatory attitudes and behaviors.
Paper I: HIV/AIDS-Related Stigma 12
A somewhat sweeping view is that congregations have colluded in stigmatization
by their silence on sexual matters in general and have thereby exempted themselves from
the struggle against HIV/AIDS.32
Religious leaders presiding at funeral rites typically do
not mention that the deceased died of AIDS-related illnesses, though this is usually out of
respect for the fears of the family.
African Christian organizations, under influence from western missionaries, tout a
trite evangelical theological paradigm - (good) creation – (bad) fall - (good) redemption
(for the chosen) -- that buttresses tendencies to categorize people as saved or sinner, pure
or impure. In its way this feeds stigma directly by blaming those who are bad, and it
indirectly strengthens the broader social stratifications within which stigmatizing
flourishes.
Paper II: Anti-Stigma Interventions 13
Paper II: Anti-stigma Interventions Needed in Africa
Introduction
Stigma has been part of the human experience since the memory of man runneth
not to the contrary, in the quaint phrase of the lawyers. It is not likely to be eradicated,
but it can be managed. In light of all the descriptions in the first paper, we need to find
comprehensive, realistic, and if necessary, incremental ways to help those affected by
stigma cope with it. We need to mitigate it in the broader society.
Mitigating stigma and its effects is best attempted when stigma’s multiple
functions in society are addressed in a coordinated fashion, or if that is impossible, when
its multiple functions are understood and expressly articulated in teaching contexts. For
instance, in attempting to empower a stigmatized person one can usefully describe
stigma’s role in the dominance-subordination dynamics of hierarchical society. This has
the potential of facilitating within the shamed person a liberating recognition that the
problem is with the intolerance of others.
This paper has two parts. The first begins with four guidelines that should be
kept in mind when undertaking anti-stigma interventions at any level, due to the complex
and overlapping aspects of the stigma problem in individual and corporate life. National-
level priorities are then specified, and these are followed by specific proposals
concerning governments and their leaders. Empowering individuals living with
HIV/AIDS is crucial in dealing with stigma, and several strategies are proposed to do
this. These are followed by recommendations to change stigma-related aspects of public
life at village levels, and particularly at health clinics. Suggestions are made as well for
training programs in stigma reduction.
The second part of this paper deals exclusively with the importance of religious
groups in mitigating HIV/AIDS-related stigma. Given the profound influence that
religious groups have in Africa, the recommendations provided therein for religious
groups could contribute greatly in the fight against HIV/AIDS-related stigma. The
second part of the paper concludes with a theological guide to discussion intended to
serve the needs of religious leaders and members of religious organizations concerned
about HIV/AIDS-related stigma.
Part One: Recommendations for Governments and Civil Society
Four Guidelines for All
The following four guidelines describe key areas of importance that all persons
should remember when working to mitigate HIV/AIDS related stigma.
Negotiate Hierarchy. Teaching people how to cope with stigma should
emphasize that stigmatization is fueled by social stratification, where some are in
Paper II: Anti-Stigma Interventions 14
Learning point. Discuss this
statement by UN Secretary General
Kofi Annan: “Speaking openly
about the epidemic is the first step
to winning the fight against it.
Silence is death. People need to
know that they can be tested
without shame; that if they are
infected, they will be treated; that if
they fall ill, they can live safe from
discrimination.”
dominant and others are in subordinate positions. It is difficult to imagine stigma and
discrimination effectively being carried out against a dominant group by a subordinate
one, but it is relatively easy to see how stigma directed downward helps to enforce
hierarchical privilege. The social analysis of stigma could be an important part of
empowering targeted people, for it tends to shift responsibility for oppression from the
blamed to the intolerant.
Within health care and religious systems, themselves hierarchical and set within
the wider hierarchical society, service providers are no less susceptible than anyone else
to dominance-subordination impulses that amplify rather than diminish the power of
stigma. It is thus important for religious and health care personnel to deal continuously
with their own tendencies to stigmatize as an essential part of HIV prevention, treatment,
support, and care.
Follow The Ugandan example. For some time the nations of Sub-Saharan
Africa have valued Uganda’s success in reducing HIV/AIDS prevalence, since it may
helpfully be applicable elsewhere on the continent.29
The earnestness of other Africans
concerning the Uganda experience means that the country’s models hold considerable
power as strategies ready to be taken up.
It is therefore significant that Ugandan President Museveni believes his country’s
success in prevalence reduction is primarily due to transparency, openness, and in
particular, frank discussion about HIV/AIDS and human sexuality. Stigma cannot
flourish under such circumstances, when silence, shame, secrecy, and denial are
weakened or altogether absent. President Museveni has said, “As opposed to other
cultures that tend not to appreciate their own problems and keep quiet, enduring suffering
silently, we come out in public using all sorts of forums…. I had to impose it on my
people to use forums like political rallies,
church congregations, school assemblies, sports
festivals to always talk about HIV/AIDS….
This approach helped us to keep our population
aware and hence the present day [beneficial]
results due to behavioral change.”42
The
importance of this cannot be over-emphasized.
Transparency’s opposite, and deadly, condition
is silence. A prominent International Red Cross
official remarked that it was not a coincidence
that Swaziland now had the world’s highest
HIV prevalence since it is also where there is no
public discussion of HIV/AIDS.43
Frame Public Policy. The best assurance of transparency is a government
committed to the same with a legal and policy structure in place to enforce this.
Unfortunately, it appears that a number of Sub-Saharan African countries have no such
measures protecting vulnerable groups, nor legislation with which to fight against stigma
and discrimination. Where there are not yet such protections and resources, an all-
encompassing framework should be installed to protect vulnerable people from the
effects of stigma and discrimination. Such a framework, appropriately enforceable,
Paper II: Anti-Stigma Interventions 15
would improve the future chances of success when enacting any single anti-stigma
intervention at any level of society.
Empower People Living with HIV/AIDS (PLWHA). The ideal intervention
will address the multi-faceted stigma problem at all levels of society. When a
comprehensive strategy cannot be undertaken, attempting to empower PLWHA should be
the first priority. The suffering of stigmatized people cries out for relief on humanitarian
grounds, and empowered PLWHA can be a vital force in changing the opinions and
behaviors of others throughout society. PLWHA should be personally empowered by
competent counseling, on a continuing basis, and couched within a human rights
framework.
Recommendations for Societies at the National Level
The following are goals that nations should pursue, under pressure from citizens’
organizations and religious groups:
Respect Universal Human Rights: Update all national laws and policies in accordance
with universal human rights, defined in the present context as rights belonging to all
people without regard for health status, sex, language, national origin, age, class, religion,
political belief, color, or race. To this end, ensure that coercive measures related to
public health – e.g., “mandatory HIV testing” for employment, marriage ceremonies, or
scholarships – are not permitted.
Implement HIV/AIDS Specific Legal Protections: Enact laws and policies to protect
all PLWHA from stigma and discrimination; specifically:
• non-discrimination policies in health care systems, religious organizations,
employers, and all other institutions of public life;
• right-to-privacy policies that guarantee protection of people accessing voluntary
counseling and testing (VCT) and treatment facilities with particular focus upon
health care providers;
• In addition, specialists should be provided to the public gratis for legal advocacy
and redress in connection with complaints of stigma and discrimination.
Protect Women: Enact well-publicized and well-enforced laws to guarantee women
equal status with men, and to punish violence against women. These include the
protection of women’s rights to inherit property, not be regarded as property themselves,
not to be inherited by family members and to have custody of their own children.
Provide Access to Medicine and Nutrition: Make available antiretroviral medications,
opportunistic infection-fighting drugs, prevention of mother-to-infant HIV transmission
medications and services, and nutrition education and food resources to all in need of
them. Antiretroviral drugs must be available, since they have the capacity to transform
HIV infection as a death sentence into HIV as a chronic illness, reducing the stigma of
the disease and stimulating people’s willingness to be tested and disclose their status.
Paper II: Anti-Stigma Interventions 16
Learning point. People’s apparent
“knowledge” of HIV/AIDS does not
necessarily mean that they understand, or
have appropriated, such data as how being
infected with HIV differs from having AIDS
symptoms, how one can be HIV+ and
transmit the virus to others while appearing
healthy, that opportunistic infections are
treatable if drugs are available, that some
forms of presumed transmission – through
caring for a PLWHA, for instance – do not
occur if a person follows simple precautions,
and so forth.
Encourage National Participation of PLWHA: Aggressively recruit people living with
HIV/AIDS to serve in all sectors, at all levels of planning and implementation of public
and private policies and programs concerned with HIV/AIDS prevention and care.
Recommendations for National Governments
The following are programs and policies that national governments should
implement as part of a multi-level approach to mitigating stigma:
National Counter-Stigma Training: Provide competent training in stigma mitigation
and anti-discrimination to all sectors of society, including health, religion, education, and
commerce.
Empowerment Training and Advocacy for PLWHA: Ensure that competent and
accessible personal empowerment training, support, and advocacy groups are available
throughout the country for people living with HIV/AIDS.
Youth Appropriate HIV Services: Make youth-accessible services available to all
young people for HIV prevention, VCT, and treatment.
Cabinet Level Participation of PLWHA: Install and empower one or more people
living with HIV/AIDS at the cabinet level of government to be an effective advocate and
ombudsperson for people living with HIV/AIDS. The person’s position should not be
dependent upon the goodwill of any government official or any other person or
organization influenced by any government official, or his or her representative.
Scientific HIV/AIDS Education: Ensure that competent, comprehensive, and
contextualized educational programs are delivered to adults, youth, and children
throughout the country on a continuing basis. These should convey scientifically
accurate information on HIV/AIDS in
simple, clear and compelling ways.
Public VCT for Political Leaders:
Political leaders should take HIV tests
as a means for reducing stigma,
demystifying HIV, and encouraging
others to be tested. The testing should
be voluntary, and widely publicized
after it is completed. (Malawi
President Muluzi announced in the
spring of 2004 that he had been tested,
with a negative result. He is almost
unique among political leaders in
doing this.44
)
Paper II: Anti-Stigma Interventions 17
Learning point. Consider this account of
competent counseling, as reported by one
gentleman from Zambia: “I approached an elder
in our church who recommended that I take the
test. So I went for counseling at Kara
Counseling in Lusaka. There I found a very
understanding person who helped me get
information on HIV/AIDS and who walked me
through what a positive result could mean. He
asked me questions I had never asked myself.
He asked me how I would cope if the result were
positive, and who I would tell. Because of his
openness to me I was willing to pour myself out
to him. I don't remember half of what I had said
to him but I do remember that he was willing to
listen to me.”
--Etambuyu Imasiku
(Quoted on [stigma-AIDS] Self-stigma and HIV/AIDS,
January 7, 2004 available at
http://archives.healthdev.net/stigma-aids/msg00078.html)
Recommendations for Empowering People Living with HIV/AIDS
The following are recommendations for those living with HIV/AIDS and those
working at any level to empower PLWHA.
Link Counseling to VCT: Link counseling with the simultaneous offer of membership
in a support group for optimum effectiveness. Support groups should be available in
close proximity to VCT facilities. Networks of AIDS counseling, support, and advocacy
organizations should be established and supported to improve service to PLWHA and
their care-givers, and create public attitudes of greater acceptance.
Disclose Sero-Status: PLWHA
can also be empowered by
disclosing their sero-status – with
appropriate support and on the
basis of free and informed consent.
Disclosure helps to reduce the
stress of coping, it enables more
free access to treatment centers, it
reduces the oppression of silence
and stigma, and it is frequently
empowering.
Disclosure Must Be Voluntary and
making decisions to disclose or not
is a continuing process. The
decision to disclose or not, and to
whom, clearly belongs to the
individual, who may have valid
reasons for not disclosing, or for
disclosing only to some people.
• There are well-known risks
of rejection, or worse,
particularly for women. It is crucial that PLWHA be supported and empowered
to disclose only if they so desire.
• Disclosure to one or more family members can be of vital importance to the
PLWHA, and this frequently results in a supportive response.
• High profile public personalities disclosing positive sero-status serve as role
models to other PLWHA.
Use Memory Books: Disclosure to children can be facilitated by memory books, written
jointly by mothers and children.45
These can also help to convey HIV information to
Paper II: Anti-Stigma Interventions 18
Glimpse of A Hero. “At his funeral,
my grandmother walked to the front of the
church and laid her hand on her grandson’s
coffin and said, ‘My grandson no longer has
to suffer with AIDS.’ Then, with her hand
still on his coffin, she turned to the pulpit
and said to the preacher who was about to
preach to the people gathered in the church,
‘Now… talk to them freely about this
disease. To us it is not a shame.’”
-Maake Masango,
(Plan of Action: The Ecumenical Response to
HIV/AIDS in Africa World Council of Churches
Global Consultation On the Ecumenical Response to
the Challenge of HIV/AIDS in Africa, Nairobi, Kenya
25-28 November, 2001. Available at www.e-
alliance.ch/resources/documents/pdf/wccpaf.PDF)
children, including the positive sero-status of a parent (or child) and they can enable
discussion aimed at reducing felt stigma by children and child-survivors of PLWHA.
Use Open Funerals: Attendees at a
funeral for one who has died of AIDS
may be more receptive to anti-stigma
messages and as such, disclosure of
the cause of death at the funeral can be
a way for family members to
contribute to the fight against the
disease. However, disclosure must
still be voluntary and the decision to
disclose should be made in advance.
The person who is soon to die of
HIV/AIDS should have the
opportunity to choose or not choose
disclosure for after their death and
family members should not be
pressured to disclose while in the
throes of grief and loss. For this
reason, support mechanisms for the
family should be in place after
disclosure occurs.
Focus on Fighting Stigma as A Long-Term Struggle: Since the dynamics of
stigmatizing attitudes and behaviors are deeply rooted and tenacious in individuals and
communities, a stigmatized person should be helped to understand and accept that
fighting stigma means actively and continuously opposing it.
Redirect Stigma: An important stratagem for empowering PLWHA is to assist them to
grasp that stigma is about intolerance, not the actions or the character of the stigmatized.
This is a crucial and liberating concept.
Use Positivity for Empowerment: PLWHA can strengthen a sense of self-worth by
committing to doing good in the community. Being a contributor, a giver, greatly
improves self-esteem. A specific focus for serving the community is to become a public
advocate for PLWHA, for anti-stigma campaigns, for voluntary counseling and HIV
testing, for home-based care, and so forth. Becoming an activist against the structured
inequalities of society, which are the seedbed of stigma, could be an appropriate
commitment, provided one astutely measured the magnitude of the challenge and its
possible personal costs.
Recommendations for Changes in Public Life
The following are goals that communities should pursue in combating stigma.
Paper II: Anti-Stigma Interventions 19
Engage in Open Discussion About Sexual Health: Regular and repeated public
discussions in all social institutions and contexts about HIV/AIDS and sexual health in
general would help to lift enacted and felt stigma related thereto.
• Factually accurate and repeated public discussions for and by youth would go far
to help with HIV prevention efforts among the not-yet-infected. They would also
undermine secrecy and denial, on the basis of which stigma flourishes.
Support PLWHA as a Community: Community support for PLWHA, when done in
such a way as to not reinforce stigmatization, can uplift all community members in the
fight against HIV/AIDS. Communities can exempt PLWHA from water and school fees,
they can create communal gardens for PLWHA and their families. Community
volunteers should repair dwellings of PLWHA and form burial associations to ease the
financial burdens for survivors.
Promote Positive Media Images: Public media should communicate messages
humanizing PLWHA, including stories of and by PLWHA. They should also
disseminate HIV-related prevention, transmission, testing, anti-stigma, and care
information.
Recommendations for the Health Sector
The following are recommendations for those involved in the health sectors of
Sub-Saharan African countries to:
Enfranchise Traditional Healers: These should be engaged in a process of education,
mutual respect, and collaboration leading to reduction in stigmatizing attitudes and
behaviors, and an increase in referrals for HIV diagnosis and treatment.
Protect Patient Confidentiality: As part of scrupulously protecting patient
confidentiality, patients being tested or treated should be informed of their rights,
including privacy rights, and the means by which to file effective complaints of violation
of these.
Train Health Care Personnel: Health care personnel should be trained in stigma
reduction, and in ways to counter tendencies to dishonor patient privacy. They should
also be trained thoroughly in HIV pre- and post-test counseling, continuing counseling
support, and in the overall needs of PLWHA. Such counseling should be rights-based
and coupled with the encouragement to join an AIDS support organization for continued
support.
Considerations for the Conduct of Stigma-Reduction Training
The Objectives of Stigma-Reduction Training are to enable awareness of the
dynamics of HIV-related prejudice, stigma, and discrimination; understand the damage
stigma can do to individuals, families, and communities; specify appropriate attitudes of
Paper II: Anti-Stigma Interventions 20
acceptance and support for PLWHA; design and enact anti-stigma programs in
organizations and institutions.
If possible, people studying ways to reduce stigma should visit homes of PLWHA
and institutions where stigma has been addressed successfully. In addition, PLWHA
should be involved in the planning, execution, and evaluation of all educational
interventions. Confidentiality should be assured for all participants in anti-stigma
training programs.
Good trainings enable discussion of the scientific facts and myths about HIV
transmission routes and patterns, irresponsible media reports and what to do about these,
and relevant statements by public figures. Strategies should be devised particularly to
mitigate the blame of PLWHA, to mitigate wives being accused of infecting their
husbands, and to mitigate women being thought of as witches.
Behavior change is more likely when more than one pedagogical mode is used.
For instance, knowledge acquisition should be supplemented by imparting counseling or
coping skills at the same time. A helpful teaching device is to enable discussion of fears
related to HIV. For instance, groups can:
• Discuss notions contributing to HIV-related stigma, including which kinds of
people are most likely to be stigmatized, and why stigmatizing remarks are taken
as true.
• Discuss the tendency to divide people into “us” and “them,” how this division is
enabled by social stratification, and how societies can be changed to become more
humane.
• Discuss self-stigmatization and what it feels like or would feel like if one were a
PLWHA.
Interactive educational strategies tend to be more effective than passive ones.
Experience-based group discussion and role-play, for instance, are helpful for both
attitude change among citizens and coping skill development among PLWHA.
• People can be invited to imagine and then recount instances in which they felt
stigmatized and/or discriminated against, and then to explore these for application
to stigmatized PLWHA.
It is reasonable to suppose that interventions designed to mitigate stigma among
health providers and strengthen coping skills among PLWHA may require sustained
reinforcement. Short-term attitude changes may occur after a stigma-reducing
educational intervention, but deeper fears frequently remain untouched. Regular contact
with a PLWHA, coupled by continuous educational reinforcement, may be helpful.
Paper II: Anti-Stigma Interventions 21
Part Two: The Importance of Religious Groups In Mitigating
HIV/AIDS-Related Stigma
It seems settled that a strong majority of African people belong to religious
organizations. The religious groups are deeply embedded in local communities and
cultures. In some countries, they provide relatively high quality health care through
hospital and rural clinic delivery systems, many of which are front-line service providers
where VCT is being done, or can be done.
Religious groups frequently deliver important social services such as orphan care
and home-based care. They are thus in a position to know the devastation of stigma and
discrimination and to have the knowledge base to describe and object to its dehumanizing
effects. Through their infrastructures, religious groups are in a position to deliver
sustained support to stigma-reducing interventions that they undertake. Furthermore,
religious leaders frequently have local moral authority in their communities to be anti-
stigma opinion leaders and change agents.
Despite well-known attitudes and behaviors to the contrary, religious groups are
custodians of heritages that value the whole person, commend caring for people who are
sick, valorize compassion, and honor community service in general. Compassionately
applied lessons from religious heritages can provide a conceptual basis for challenging
stigmatizing tendencies of certain African traditional notions of disease transmission.
Given all of this, below are a number of recommendations specific to religion
organizations involved in the multi-layered and coordinated approach to HIV/AIDS
related stigma mitigation.
Recommendations for Religious Organizations
Build on the Ugandan Example: The Ugandan Anglican Diocese of Namirembe has
set a standard for creating and sustaining a comprehensive strategy for dealing with
HIV/AIDS.46
• Each local church is obliged to have 60 volunteer educators and home-based care
providers trained in the various aspects of HIV/AIDS, reproductive health
communication, counseling skills, and home based care (HBC) for the sick and
dying. A third of the volunteers are Sunday School children, 20 more are from
the youth fellowship, and the final 20 are adults. Each peer educator speaks with
5 other people about HIV/AIDS and general health each month. In the 520
congregations of the diocese they reach 1,872,000 people in one year. Moreover
each of the 60 educators provides direct service by cleaning dishes and clothes of
sick people, works in the yard, fetches water, harvests food, delivers nursing care,
and supports the bereaved.
• The diocese applies itself forcefully to stigma-reduction strategies through post-
HIV test clubs, where information, support, assistance with disclosure, advocacy
campaigns, Bible study, income generating activities and sensitization programs
are based. The diocese also advocates building and maintaining a clinic in each
parish currently lacking one. These are to enable diagnosis, treatment, referrals,
Paper II: Anti-Stigma Interventions 22
Learning point. Since HIV/AIDS is
interlinked with human sexuality, reports
have often indicated that the best way to
fight stigmatization is to talk openly about
sexuality. Kenya Muslim Supreme
Council's Sheikh Al Haj Yusuf Murigi said,
"Break the silence on sexuality to enable
open discussions on HIV/AIDS and
everything related to it."
(Mulama, J. (September 24, 2003. Human
Rights: A New Wall of Stigma Proving to
Be a Setback in the Fight Against AIDS.
Inter Press Service. Available at
http://www.aegis.com/news/ips/2003/IP03
0924.html)
maternity care, HBC support, and VCT. The parish raises the money locally to
pay visiting physicians and purchase instruments, drugs, and supplies. A health
department is established in the bishop’s office. This undertakes HIV/AIDS
workshops throughout the diocese, does on-going monitoring and evaluation of
local programs, collaborates with the government and NGOs, and integrates
health issues into liturgies.
Offer Hope: Re-building self-esteem among the stigmatized, and offering hope, may be
the most important of religious tasks. The resources of the Christian heritage for doing
this are considerable, as will be illustrated below.
Stay Informed and Involved: Religious leaders should regularly avail themselves of
accurate and timely information on HIV/AIDS, and disseminate this aggressively. They
should above all see themselves as healers in the sense of health care education,
prevention education, stigma reduction,
and on a broader social level, as healers
of society and advocates for full human
rights for all.
Talk About Sexual Health:
Congregational leaders should speak
openly, compassionately, and non-
judgmentally about sex, HIV/AIDS,
stigma, and the ways that class and
gender-based social stratification
facilitate stigma -- during worship, in
adult and youth educational programs,
and when leaders visit parishioners.
Bring the Leadership on Board: In
hierarchical churches, thoroughly
bringing the bishops on board with anti-
stigma strategies and imperatives is a high priority. Leadership at the highest levels will
make leadership at the local level more effective and more sustained.
Volunteer for Counseling and Public HIV Testing: Religious leaders can be
persuasive concerning VCT when they themselves have been tested, so they should be
tested with widespread publicity that they have done so.
Include People Living With HIV/AIDS: Churches should put PLWHA into prominent
positions of leadership and planning at all levels and across all areas of the church’s life.
• Congregations should support individuals and families living with HIV/AIDS by
visiting, providing home-based care, and by treating them with the same level of
respect accorded to others.
Paper II: Anti-Stigma Interventions 23
• Congregations should facilitate and support carefully planned disclosure of sero-
status when the PLWHA has decided to disclose. Particularly when a wife
discloses her sero-status to her husband, having supportive religious leaders on
hand can be protective and stabilizing.
• PLWHA should be encouraged and supported in giving testimony in worship and
other religious gatherings concerning their needs and concerns.
• Religious groups should develop and implement rituals that honor PLWHA and
all who have died of AIDS-related illnesses. One stigma-weakening and silence-
breaking religious ritual has been to light a candle and name a loved one who has
died because of AIDS-related illnesses.
Work for Gender Equity: The above information should be presented in ways that are
supportive to women, empowering women and girls, inculcating respect of women on the
part of men, encouraging safe behaviors and encouraging accessing health facilities for
STI and HIV counseling, testing, and treatment.
• Religious organizations should re-frame the institution of marriage so as to make
it gender-justice-based. During pre-marriage counseling and in all public ways,
religious leaders should strive to ensure that women have the right to refuse sex,
to insist upon the husband being HIV tested (and upon being told the test results,)
and to demand condom use if wives so desire them.
• Commensurate with spoken support of women, churches should ensure that
women are proportionately represented in leadership positions, and should work
toward gender equality in churches, families and communities. A vital, specific
objective is to establish and sustain the right of women to negotiate sex.
• Religious leaders should regularly remonstrate with practitioners of traditional
ceremonies that expose young people to HIV infection and/or socialize girls or
women to subordinate roles.
Educate for Dignity and Compassion: Religious educational programs should describe
the dynamics of prejudice, stereotyping, stigmatization, and discrimination, and should be
framed in the context of human dignity or the sacredness of human life – analogues of a
sort to human rights-based discourse in the secular sphere. In particular, religious
educational programs should expressly apply Biblical themes of reconciliation,
compassion and care for the sick and the stigmatized (in the Bible, lepers, gentiles,
“sinners,” and the like) to HIV/AIDS-related stigma.
Integrate With Other Providers: Religious organizations should strengthen their
relationships with government, NGOs, and health providers, for construction and/or
improvement of referral networks and more effective delivery of confidential HIV
prevention, treatment, care, and anti-stigmatization services and support.
Paper II: Anti-Stigma Interventions 24
Provide Advocacy: Religious groups should be advocacy organizations to hold
governments and health systems accountable to prevent stigma and discrimination, and to
provide redress when someone is victimized. They should also be advocates for access to
ARVs and opportunistic infection-fighting medication.
Provide End-of-Life Care: Congregations should initiate palliative and end-of-life care
programs. Respecting and supporting people dying of AIDS-related illnesses does much
to mitigate stigma.
Include HIV/AIDS training for Clergy: Theological and pastoral counseling and care
training programs for prospective and ordained clergy should contain appropriate course
content pertaining to HIV/AIDS and its various prevention and care aspects, including
stigma.
Examine Liturgical Language: Liturgical language should be scrutinized and if
necessary amended to ensure that it is non-stigmatizing, gender inclusive, and expressive
of solidarity with PLWHA.
Support Income Generating Activities: Congregations should support income
generating activities for PLWHA and their families.
Support Child-Headed Households: The stigma that frequently attached to child-
headed households can be weakened by publicly and caringly providing support to child-
survivors in PLWHA households.
Theological Discussion Guide
The following section provides discussion points that relate to certain Christian
theological emphases in the context of HIV/AIDS and Stigma. It can be used for oneself
as a guide to thinking and self-evaluation. It is also intended as a guide for discussions
with others, be they religious leaders or lay people of Christian faith.
The Sick Helped To Found Christ’s Community
Read and discuss: In a religion that believes there is only one deity, the deity is
thought to be ultimately responsible for all illness. In the Hebrew Scriptures,
Deuteronomy 28 says that health is related to covenant faithfulness, but illness means one
has violated the covenant, which is sin. Illness thus implies disfavor with the Divine, so
the suffering person reviews his/her behavior and implores forgiveness and healing. But
not only for one’s own sake. In early communities the health or illness of one implicated
the health or illness of (and the Divine favor or disfavor toward) all. Ancient Near
Eastern views of illness causation of course included no scientific understandings of
disease transmission that are taken for granted by many in the west today.
Chronically ill people were typically banished from the community – not so much
out of fear of contagion as from a need to protect the moral purity of everyone else.
Those thus banished constituted a ready pool of people attracted to Jesus, who welcomed
Paper II: Anti-Stigma Interventions 25
all the outcast, and therefore the stigmatized ill, into citizenship in his “kingdom”
(community.) People who were ill formed an important part of the earliest Christian
movement.
The Sick are Created in, and Live in, the Divine Image
With reference to present-day stigmatized, devalued, and outcast people, read and
discuss the “image of God” in Genesis 1: 26 – 28. Here all are created in the divine image
without qualification or exception. If all people, including the sick, are created in the
image of God, what does this imply for the dignity of all people? Also discuss “in the
image of God, male and female He created them.” Does this state that women are created
in the image of God and are thus entitled to the same respect accorded to men?
In the Struggle for Human Solidarity, Good is Always on the Side of the Unjustly
Oppressed
Read and discuss: A foundational account in the Bible of the emergence of Israel
as the people of God begins with the oppression of Hebrews by Egyptian leaders. As
recorded in the book of Exodus, the living God reached down into history “with a mighty
hand and an outstretched arm” to set the oppressed free. The same Power led them into a
condition of security. From this we know that the One to whom the Bible points is
known as a partisan of the vulnerable in the struggle against oppression.
Illness Afflicts All Kind of People, Regardless of “Sinfulness”
Read and discuss: The author of the Book of Job did not believe that illness
resulted from sin. The Book of Job challenges punishment theories of illness because
Job’s suffering is not the result of sin. Job was a righteous man yet he suffered terribly,
therefore the righteous suffer like anyone else. This view of the innocence of the
suffering was accorded the status of divine revelation by its inclusion in sacred scripture.
Jesus Blesses Those Who Work for Justice
Read and discuss Jesus’ sermon on the mount (Mt 5:1ff), a kind of charter for the
new community. The beatitudes, the blessings, serve as a listing of the people who,
despite the world’s way of valuing the privileged, are TRULY honored and honorable.
Notice the characteristics of THIS people: the poor in spirit, those who mourn, the meek,
the people who hunger and thirst for righteousness (which means making right what is
wrong in the world), the merciful, the pure in heart, the peacemakers, and people
persecuted because they were righteous (the people who were fixing things for the
greater justice of all). Where do people who work for the justice for sick people fit into
the community of the blessed?
Paper II: Anti-Stigma Interventions 26
Jesus Objected to People who Judge, Stigmatize, and Exclude
Discuss the antipathy between Jesus and the Pharisees, and apply this to present-
day tendencies to judge, stigmatize, and exclude. The Pharisees are those who claim to
know good and evil, and who believe that differences between the “sinner” and the
person struggling toward the good matter decisively. Analyzing and categorizing people
as acceptable, discredited, pure or impure, is the Pharisee’s defining characteristic, and
this is what Jesus continuously objected to.
Jesus Joined His Cause to the Cause of the Stigmatized
What does it mean that in churches the cross – an instrument of state-sponsored
execution -- is the most central religious symbol? Discuss the cross as symbol that Jesus
joined himself to stigmatized “sinners,” making their cause his cause, and being
condemned to die by the powerful outside the city walls. (This is as opposed to notions
of the church, built upon Jesus, as a community of the allegedly pure and excluding
people adhering weakly or not at all to religious rules, rituals, and expectations.)
Shame as a Source of Cleansing and Newness
Read and discuss the following with reference to stigma and shaming: In the
letters of Paul, Jesus’ cross is also his “shame.” He was mocked and cursed. In Hebrews
13:11-14 it says, “…so Jesus too suffered outside the gate to sanctify the people with his
own blood. Let us go to him, then, outside the camp, and share his degradation.” A
Christian theologian, reflecting on this, says, “Jesus goes to the place of our shame to
make it the place of God’s feast, the place of baptismal cleansing and newness.” What
opportunities does the shame produced by AIDS bring to all of us?
The Christian Sacraments as Anti-Stigma Rituals
Discuss the basic Christian sacramental rites as anti-stigma rituals. Does “being
baptized into Jesus’ death,” for instance, mean joining him in solidarity with all the
stigmatized? Does the Lord’s Supper, the mass, or Eucharist -- Jesus’ table fellowship –
bring to mind the stigmatizers’ charge, “this man welcomes sinners and eats with them”?
Jesus and the Rights of Women
In light of stigma and discrimination today, what does it mean that Jesus
consorted with women, who had no citizenship rights, and with children, who also were
without social standing? Does he consort also with children who, because of AIDS, are
forced to head their own households today?
Being a Good Neighbor to Everyone, Particularly the Outcast
Read and discuss the “Good Samaritan” parable, presented by Jesus as a parable
of the divine realm (Luke 10:29-37). It begins with the exclusivist question, “Who is my
Paper II: Anti-Stigma Interventions 27
neighbor?” Using the example of the presumably impure (stigmatized) person (the
Samaritan) who helped someone in need, it ends with the exhortation to be a neighbor to
anyone in need, as the outcast person (the Samaritan) was a neighbor to the injured man
in the ditch who needed help.
Christian Virtues and The Treatment of PLWHA
Discuss the applications of Christian virtues to character formation within the
context of HIV/AIDS stigma. What does being faithful, hopeful, loving (caring),
prudent, courageous, just, and temperate (possessing self-mastery) mean within
congregations, communities, and families, when PLWHA are subjected to stigma and
discrimination?
Offering Hope and Redemption to the Sick and the Dying
Religious communities offer hope that may not be available from other sectors of
society. Discuss theological ideas of an afterlife, and a loving and accepting deity, within
the context of HIV/AIDS and stigma.
Confession of the Church
Some African theologians and religious leaders have stated that stigmatizing and
discriminating are sins. Discuss the Christian notion of public confession of errors and
omissions of the churches, their people, and their leaders, as applied to the stigmatization
of PLWHA. Discuss this with specific reference to PLWHA and discuss the following as
a confession that The Church may wish to make:
• The Church has promoted punishment theories of illness. It has colluded with
silence and negativity regarding human sexuality. It has been sinfully obsessed
with sexual purity. It has colluded with patriarchy and the subordination of
women. It has been timid before unjust social structures. It colludes with
fatalism. It ignores its mission to serve all in need, preferring imperialistically to
convert them. It grasps after its own glory, rather than leaving this behind,
emptying itself, and witnessing to a god who enhances and saves the lives of the
people. It has participated in the cultural and religious imperialism of the West.
Further Biblical Texts Relating to HIV/AIDS and Stigma
Read and discuss the following Biblical texts:
• Jesus did not believe illness was evidence or consequence of sin (John 9:1-5).
• Jesus healed all diseases unconditionally, without first asking if someone sinned,
or how they sinned, or whether they repented (Mk 1:29-30).
Paper II: Anti-Stigma Interventions 28
• Jesus broke the stigma associated with leprosy and restored the lepers to physical
and social health (Mk 1: 40 – 45; Lk 17:11-19).
• Jesus denounced self-righteousness among the religious (Lk 18:9-14).
• Jesus took sides with the marginalized and oppressed (Mt. 9:10-13; Lk 18:1-8; Mt
25:31-45).
• Jesus learned from the Samaritan woman at the well – as a Samaritan and as a
woman she was doubly stigmatized, but in this context she became Jesus’ teacher.
(John 4:5-42)
• See the platform for Jesus’s ministry in Luke 4: 18 - 20.
• In the end he defeated the powers that separate people into dominant and
subordinated groups, and finally defeated the power of death itself through his
resurrection.
References 29
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A Call For Community Two Papers On HIV And AIDS Related Stigma In Africa

  • 1. A Call For Community: Two Papers on HIV and AIDS Related Stigma in Africa William Rankin, Ph.D., Sean Brennan, M.P.H., Ellen Schell, Ph.D., Sally Rankin, Ph.D.
  • 2. A Document of Global AIDS Interfaith Alliance (GAIA) Box 29110 San Francisco, California 94129 U.S.A. Tel: 415-461-7196 Fax: 415-461-9861 Email: info@thegaia.org www.thegaia.org The principal author, William Rankin, Ph.D., gratefully acknowledges the generosity of the Rockefeller Foundation, which made possible the research and writing for these papers by way of a residency fellowship at the Rockefeller Center in Bellagio, Italy, during April and May, 2004. Additional copies maybe obtained through contacting GAIA at the address above. Another version of the first paper appeared in Public Library of Science Medicine: Rankin WW, Brennan S, Schell E, Laviwa J, Rankin SH (2005). The stigma of being HIV positive in Africa. PLoS Med 2(8):e247. Photo Above: Wall sign in Malawi (Blake Robinson) Cover Photo: Village caregivers provide HIV prevention and care in a Malawi village (Mary Thomas) © Global AIDS Interfaith Alliance 2005
  • 3. TABLE OF CONTENTS Paper I: HIV/AIDS-Related Stigma in Africa 1 The Importance of HIV/AIDS-Related Stigma 1 Basic Stigma theory 2 Stigma in Eastern, Central, and Southern Africa 4 The Role of Fear and Internalized Stigma 6 The Basis of HIV/AIDS-Related Stigma in Africa 7 Stigma and Particular Groups in Africa 9 Paper II: Anti-stigma Interventions Needed in Africa 13 Part One: Recommendations for Governments and Civil Society Four Guidelines for All 13 Recommendations for Societies at the National Level 15 Recommendations for National Governments 16 Recommendations for Empowering People Living with HIV/AIDS 17 Recommendations for Changes in Public Life 18 Recommendations for the Health Sector 19 Considerations for the Conduct of Stigma-Reduction Training 19 Part Two: The Importance of Religious Groups In Mitigating HIV/AIDS-Related Stigma Recommendations for Religious Organizations 21 Theological Discussion Guide 24 References 29
  • 4. Paper I: HIV/AIDS-Related Stigma 1 Paper I: HIV/AIDS-Related Stigma in Africa It is widely recognized that HIV/AIDS-related stigma is both widespread and a significant obstacle to the provision of effective care and prevention measures. Beyond that statement, however, little is certain in terms of how pervasive HIV/AIDS-related stigma is, what its causes are, what forms it takes and what steps can be taken to reduce or eliminate it in the many different settings in which it occurs. Indeed, it is possible that the word stigma itself is inappropriate or does not cover the full range of negative actions and attitudes that may be directed towards people living with HIV/AIDS or are otherwise identified with the disease. - Panos London 1 Introduction When the late Jonathan Mann addressed the UN General Assembly in 1987 he characterized the major phases of an HIV/AIDS epidemic.2 The final phase, after the initial silent spread of the virus and then the outbreak of physical havoc, was defined by social reactions to the devastation caused by AIDS. The most problematic of these are stigmatization and discrimination. Facing up to HIV/AIDS means struggling against the stigma that, if not ameliorated earlier, becomes—like the disease—most wasting in this final phase. By 2000 the urgency of dealing with stigma was re-stated by Dr. Peter Piot, Executive Director of UNAIDS, when he remarked that it was the most important task in fighting the global HIV/AIDS epidemic.3 Piot’s insistence on this point bore fruit in the theme of the 2002-2003 World AIDS Campaign: the reduction of HIV/AIDS-related stigma and discrimination. This paper first considers the question of why stigma should be dealt with as a part of the struggle against HIV/AIDS in Africa. It next describes basic stigma theory and then it characterizes HIV/AIDS-related stigma, with an emphasis on Eastern, Central, and Southern Africa, where HIV-1 is prevalent and where infection rates are highest on the continent. The role of fear and self-stigmatization as well as the basis of HIV/AIDS- related stigma in Africa are explored, and finally focus is placed on how stigma affects or is affected by specific groups -- women, children and youth, health care providers, traditional healers, and religions. Some women and men have coped with or surmounted the dehumanizing forces of stigma while affirming themselves, providing wise counsel, or giving service to others in need. Throughout the paper are glimpses of these heroes in the struggle against HIV/AIDS-related stigma. The Importance of HIV/AIDS-Related Stigma Stigma is of urgent concern because it is both the cause and effect of secrecy and denial, which in turn are the primary preconditions for rapid HIV transmission.
  • 5. Paper I: HIV/AIDS-Related Stigma 2 Glimpse of A Hero. “This disease touches the worst of society’s ills.” - Thomas Coates, Professor of Infectious Diseases, UCLA. Moreover, it adversely affects care for people living with HIV/AIDS (PLWHA), who frequently become isolated in their communities. Stigma is emblematic of, and reinforces, attitudes and social structures that set people against each other and so undermines social cohesion. The un-stigmatized or not- yet-stigmatized believe themselves to be superior to the people who are targeted. Stigmatizers blame victims for their behavior, and so may feel reassured about their own invulnerability to disease, due to their righteous attitudes or behaviors. An interesting illustration of stigma is the ominous associations we can have with the word nyambizi (“submarine,”) a term used in Tanzania to refer to a person living with HIV. 4 In this usage, the PLWHA is stealthy, menacing, deadly. The rest of us, the putatively innocent, are advised to be wary. The impact of stigma upon the targeted individual is particularly debilitating. Even without stigma an enormous and painful struggle may already be taking place within someone who is seriously ill, and it is important to pause a moment to acknowledge this. The harm of internalized stigma (self-stigmatization) adds further misery to a difficult struggle.5 Even without externally enacted stigma against a person who is ill, the onset of serious illness means essential identity can come under serious attack. A person may cease to be who one was, instead becoming a person-with-an-illness, or more devastatingly, an ill-person, a thing in which personhood and illness have fused at the most basic human level and the self is profoundly changed. The French philosopher Simone Weil characterized the assault of illness upon the self in terms of the classical Greek notion of the soul.6 Terrible self-loathing (she used the term malheur) may seep into the depths of someone living with serious illness. Deep disgust may be felt against ourselves as ill people and this can destroy our very souls – or we might say destroy the humane and humanizing self that we believe ourselves most essentially to be. It is upon this already serious oppression that illness-related stigma adds its heavy burden. When a person is targeted by stigma, then perceives it, feels it, and finally internalizes it, self-stigma is the result. The individual’s outward behaviors may project a debased inner frame of mind. She or he may isolate or quarantine her/himself and altogether give up hope. This is a condition of terrible emotional oppression. The loss to society is considerable. By immobilizing the very people who could credibly speak out and educate for HIV prevention and who could care for other PLWHA, stigma strengthens the likelihood that HIV incidence will increase and that many more people will die in despair and as outcasts. Basic Stigma Theory It is widely accepted that self-respect is an essential human good, something we need in order to live our lives in an affirmative way. This enables an individual to value the self and to have realistic confidence in the ability to fulfill one’s aspirations. Generally, we sustain self-respect by having the acceptance and approbation of an
  • 6. Paper I: HIV/AIDS-Related Stigma 3 Glimpse of A Hero. “No one can make you feel inferior without your consent.” -Eleanor Roosevelt individual or a group. Self-respect is undermined by stigma and discrimination -- directly by inducing shame and other self-denigrating feelings within the individual, and indirectly by weakening or destroying the social support surrounding the targeted person -- including sometimes the community support needed by their family and survivors. Erving Goffman’s work on stigma has been the primary point of reference on the topic since it was published.7 He defines stigma (pl. stigmata) as “an attribute that is significantly discrediting.” Stigmatizing is typically enacted against a person or group out of prejudice and it functions in relationships to diminish the person or group being targeted. Social notions of deviance, or sometimes only difference, mean that the stigmatized person becomes devalued. It is helpful to define certain theoretical terms when discussing stigma theory. “Enacted stigma” directed against a person by others may first be perceived by the target, then felt, and finally internalized so that in the end the target colludes in her or his own oppression by self-stigmatization. Internalized discrediting may be experienced as shame. The term “perceived stigma” has come into recent use in some social scientific literature. It is apparently meant to be a synonym for “felt stigma,” though careful comparison of the two terms shows different connotations. Perceived stigma implies a stigmatized person’s awareness of externally imposed discrediting, whereas felt stigma implies experiencing the pain of stigma. “Courtesy” stigmatization – Goffman’s term -- occurs when a person or group associated with the target is included within the field of people being stigmatized. Recently theoreticians of stigma have analyzed how the stigmatizing process functions in social structures to subordinate individuals or groups, while reinforcing hierarchical patterns of privilege.8 In this view, the struggle for privilege entails the oppression of others through social relations of domination and subordination. To be effective, interventions aimed at mitigating the causes and effects of HIV/AIDS-related stigma should accordingly be predicated upon an analysis of how stigma functions to enhance dominance and subordination in society. That is to say, empowering those oppressed by stigma while also teaching respect of all means assisting oppressed individuals toward self respect, and working with the targeted to frame a critique of unjust societal dynamics, challenging the assumptions and warrants of privilege, and generally creating a more just society. A common example of stigmatization reinforcing hierarchical patterns of privilege is that of punishment theories of illness causation.9,10,11 These include notions that an aroused deity, ancestor, or witch brings an illness upon an individual because of some kind of offense committed by the person. Such ideas buttress tendencies to stigmatize people living with illness and they serve as explanations and enforcers of dominance and subordination. They enable communities for whom purity matters (like some religious groups) to purge the “impure” – people whose illness, “sinfulness,” would contaminate the whole -- while feeling reassured that their own virtue will protect the righteous from harm.
  • 7. Paper I: HIV/AIDS-Related Stigma 4 The social inequalities within religious groups and in the wider social order may predispose oppressive human relations in general. They may also imply an insufficiency of functioning and accessible, human rights-based, legal, and policy mechanisms to protect people subject to stigma and discrimination. From the vantage point of the stigmatized, on-going supportive counseling and membership in self-help groups is urgently needed if one is to stand up against such oppression, or perhaps survive it. Stigma in Eastern, Central, and Southern Africa HIV/AIDS-related stigma may be more prevalent and potent in African villages than in urban areas, since many rural settings are underserved by government educational programs and other sources of information. In villages people rely heavily upon others, the same families have frequently lived together for several generations, and much is known about neighbors. Gossip for good or ill can greatly affect social standing. Moreover, in a village, HIV may be regarded as a disease of foreigners -- strange people “not like us.”12 Sometimes PLWHA are condemned for having gone outside the community, where they presumably contracted the virus and then introduced it locally. Some people with stigmatizing attitudes and behaviors openly and enthusiastically indulge these – as in the case of certain (but by no means all) religious leaders who promulgate punishment theories of illness causation.13 Other people who stigmatize are unconscious of doing so. It is possible, for instance, to find individuals who state the importance of accepting all people, but who use stigmatizing language to describe a PLWHA.14 Both stigmatization and respectful caring can occur in the same community and in the same person. Some African countries have no term for stigma, which make attempts to raise consciousness a bit more difficult, though usually there are words meaning discrimination.14 Enacted stigma seems most likely to be directed at a person who is ill when the illness is thought to result from personal choice, when the illness is progressive and irreversible, when it is contagious, and when it leads to unappealing physical changes.5 It is possible that the more patently ill a person is, the more likely she or he will be stigmatized. In the close context of family and neighbor in village life, fear of being stigmatized engenders denial that one is or may be living with HIV. This fear feeds a culture of silence, as people are reluctant to disclose their sero-status lest they be rejected or because they have internalized stigma as disempowering shame. Fear of being stigmatized militates against being counseled, tested, and/or treated for HIV, since in the villages everyone knows who visits a clinic. Stigma-related fear may inhibit condom use because the individual may be in denial, or may want to convey falsely that he is not infected. Fear of stigma may lead a pregnant woman to expose the fetus to increased risk of viral infection, rather than be tested and receive medications to reduce the infection risk to the baby.15,16,17 It may cause a mother to expose her infant to HIV through breast milk, rather than take measures to avoid this and thus arouse suspicions concerning her sero-status.18,19 Silence, secrecy, and denial are evidenced in newspaper obituaries that almost always avoid mentioning HIV/AIDS as a cause of death.20 Stigma may limit the quality and amount of care received by a PLWHA, as neighbors or even family members may refuse to be in the presence of the individual. An
  • 8. Paper I: HIV/AIDS-Related Stigma 5 Glimpse of A Hero. “It is rather now that they hold me like an egg. Even before they didn’t handle me like that. They realized if they didn’t handle their sister like that, she would disappear from them.” - An African woman with HIV who disclosed her status.33 unfortunate exception to this is stigmatizing caregiver-voyeurs.4 Within a family discrimination against a PLWHA can entail ostracism, blaming, rejection, and even abuse. Husbands have beaten and/or abandoned wives thought to be living with HIV, even though many women contract the virus from their husbands. PLWHA may be forced to eat alone, may be isolated by family and/or community, or may be dispossessed.4 (Some individuals, however, are treated well by family and/or neighbors after their health status is known.) Stigma-related rejection may be abetted by off-putting behaviors of a person who is sick, frightened, and struggling with oppression and with the many emotional burdens of having a dreadful illness. In some areas of considerable poverty, expending resources on a PLWHA may be thought wasteful since the person will die. This is a serious form of stigmatization. Family members will be aware that the costs of caring for a person who is ill could be considerable, could have lasting consequences, and could make the lives of other family members difficult.21 In subsistence farming areas, for instance, the illness of one PLWHA can mean that care-giving would use up any family savings well before the person dies. It means the recognition that she or he will be become increasingly unproductive, and that caretaking will sooner or later draw one or more family members away from growing food. In the absence of even a minimal social safety net (which may have been greatly weakened because of stigmatization in the village) the whole process is ominous for everyone in the family. The belief that a PLWHA “will die anyway” can cause a caregiver to give up on the person and believe that the sooner the person dies, the better. If stigmatization, or the fear of it, becomes great enough, a family member may move away from the community, either before or after the death of the PLWHA. Stigma may result in workplace discrimination or outright removal from a job.4 It may entail creating scapegoats – presumed deviants or outsiders thought responsible for introducing HIV to an area. Women, sex workers, and youth -- all groups already disempowered in society -- are frequently blamed for bringing illness into the family or community. Courtesy stigma may lead to community disdain for or rejection of one’s family members and survivors. Language (“she is an HIV,” “he is a walking corpse,”) conveys stigmatizing attitudes. Seven categories of stigmatizing terms were found in Zambia to describe a person living with HIV.14 The words variously connoted deviance, death, physical limitation, an individual unable to continue the appearance of health, acceptance of a disease, HIV/AIDS-related symptoms, and care-giving burdens. In a different way, the limitations of language work against candid discussions of sexuality. In Malawi, for instance, there is no indigenous word for “wife,” since (it is thought) to speak of one’s wife is to evoke sexual imagery, which is inappropriate. In the Chichewa dialect of Bantu -- with English an official language of Malawi -- a circumlocution for “wife” is
  • 9. Paper I: HIV/AIDS-Related Stigma 6 used: “the mother of my house.”22 Nor is it helpful that in Malawi, for instance, the term for a sexually transmitted disease, regardless of its origin, is “woman’s disease.”23 The Role of Fear and Internalized Stigma In anticipation of felt or internalized stigma many people, especially in high HIV prevalence areas, live with anxiety concerning themselves or a family member being diagnosed, discovered and then stigmatized as living with HIV. Fear of stigmatization inhibits people from being tested for HIV, which partly accounts for the so-far disappointing results in attempts to connect people with free medications. A 2004 Reuters report from Botswana, for instance, indicates that despite the many millions of dollars poured into the country by the Merck Foundation and the Gates Foundation, people still resist being tested (and then treated) for HIV infection.24 Years go by until a person becomes very ill, and she/he only then seeks testing in order to qualify for treatment. In the meantime new infections are transmitted. A senior Botswana official believes about 90% of his country’s people do not know their sero- status. He adds that treatment “is a waste of time if you are not stopping new infections. It's like trying to mop a floor without turning off the tap." 24 Self-stigma is most potent just after one learns her or his sero-status. If the person already has low self-esteem, and/or already holds punitive views of HIV infection, and/or if she or he has an inadequate system of social support, then internalized stigmatization can be especially devastating. The emotional pain of an assault upon one’s identity may result in a vicious downward spiral accelerated by fear, despair, paralyzing notions of fatalism and self-loathing, an incapacity to plan for the future, apprehensions about dying and death, and finally self-destructive attitudes and behaviors. Against these a person may urgently struggle for self-respect, hope, and comfort in an agreeable notion of afterlife. Self-stigma frequently causes isolation of self from friends, services, and community; one may strive harder to prove one’s worth; he or she may maintain silence about his or her health; and the individual may engage in a fierce struggle with fears of being exposed as a PLWHA. We have heard anecdotally that a common strategy is to explain visible skin lesions as insect bites or allergies, weight loss as caused by poverty, and so forth. Such denial and/or deceit of course undermines the integrity of self and of self-in-relationships. Greatly impaired because of internalized stigma is the chance a PLWHA will experience the love all people need or the experience of giving love, which all need as well. Self-stigma may cause a person to give up on love, or be unavailable, or be reluctant to open the self to it out of a sense of unworthiness and fear of rejection.4 Added to shame is the guilt some feel when they test positive, due to the possibility that they have infected others, perhaps including spouse and/or children. Felt stigma, like the external kind, makes disclosure of sero-status difficult for PLWHA. Although self-disclosure may be personally empowering, a way to fight back against stigma and discrimination, it can also be risky since it opens the possibility of losing relationships with family members and the community. Many Africans do disclose to some family members or partners -- frequently to a close family member in the same generation.4 Many men divulge their HIV status to their mothers. Many do not
  • 10. Paper I: HIV/AIDS-Related Stigma 7 tell their partners, which can of course be dangerous among HIV discordant couples (the spouse is not living with HIV). Disclosure by a wife to a husband can be fraught, owing to the dangers of injury from physical violence and/or abandonment and dispossession by the husband or his family. Because of this, and because of fears of stigmatization from health care personnel or the community, many African women tested for HIV during pregnancy do not return to the test site to find out test results.17 Many testing HIV positive do not want to be told their test results. Disclosing to a child is frequently not done, out of fear that the information will be passed to others in the family or community. Disclosing to a child living with HIV is especially difficult, though it has been somewhat eased by using memory books, which are created jointly by a child and usually the mother to record stories and events helping to preserve images of the family. These provide a circumstance in which serious illness can be discussed. The Basis of HIV/AIDS-Related Stigma in Africa The basis of HIV/AIDS-related stigma in Africa is fear of contagion, particularly through casual contact, and thus it is powered by inaccurate understandings of HIV transmission.4 Casual contact theories of transmission seem plausible because these seem to account for the high prevalence of AIDS-related illnesses. Casual contact fears are deeply rooted, even among people who presumably know better. They may persist, for instance, among health care providers, so that working with patients living with HIV may be very difficult for them. Not infrequently they will stigmatize their patients out of fear of contagion. The caregivers in many families of a PLWHA are frequently concerned about contracting HIV through casual contact.25 Others in the community may refuse to purchase vegetables or poultry, for instance, from someone living with HIV/AIDS or even from a spouse or child of the same. In impoverished areas this has a serious impact upon the family’s economic survival chances. The PLWHA is made to eat alone and is sometimes secluded in a separate room away from family members. In African villages, traditional cultural and religious notions of illness-causation may be deeply rooted.26 Traditions frequently teach that supernatural forces cause certain types of illness in particular, and such illnesses are strongly associated with stigma. These include illnesses that deform, infectious diseases where the vector is not understood, serious illnesses, and instances in which the individual breached a societal norm. Punishment theories involving the deity or an avenging ancestor or community member are invoked to explain some illnesses. When witchcraft theories of illness causation are put forth, or where the illness is attributed to poisoning by presumed enemies, stigma usually follows. Since many people living with HIV and their family members visit traditional healers before or instead of consulting Western health care personnel, traditional attitudes reinforcing HIV/AIDS-related stigma may be magnified rather than mitigated. Indeed, some people will not be seen near an organization or institution working on HIV/AIDS, out of fear of being stigmatized. Many will not seek voluntary counseling and testing
  • 11. Paper I: HIV/AIDS-Related Stigma 8 (VCT,) or stay after a blood sample is taken to learn test results, or return for treatment, even if available and free, out of the same fear. Some villages do not want HIV/AIDS workers in them, for fear of being stigmatized. Large numbers of African families will not discuss male and female sexual behaviors in general.27 Talking openly about a sexually transmitted infection (STI) or STI prevention strategies is very difficult. In the phrase of a conferee at a GAIA training session in Malawi, “I’m a father myself, and a grandfather for that matter. It is practically unacceptable to talk about sex in your family, to your children, let alone with girl children, right? That is a fact.” In the tightly interwoven structure of African villages, the identity of the individual is tied to that of the family, the community, and the tribe. Stigma attaching to one may be generalized to include the courtesy stigmatization of all. At a GAIA stigma- reduction training conference we heard this from one Malawi conferee: “[HIV/AIDS- related stigma] is not affecting just the parents but the whole clan as such, or even the whole village, and that’s why we have a difficult time with [the sick person] being asked to maybe move out of the place because the whole group of people who are relatives of this daughter or son, they felt offended after being likened as a relative of the victim. So this is really what is killing us.” There is a stigmatizing tendency to associate HIV infection, especially among women and the young, with promiscuity, which is frequently a synonym for “sinfulness.” Opprobrium frequently attaches to the “sinner’s” family as well. The mother and father of a daughter or son living with HIV/AIDS are blamed for having been bad parents. This comment by a Malawian is typical: “I think the most important thing is it’s sinful. [When a daughter has AIDS] people are saying she hasn’t been responsible. The main thing is that she hasn’t been taught to behave…” The silence throughout society concerning human sexuality works against people with an STI. These are scapegoated because of issues that cannot be dealt with openly. For instance, husbands contract HIV through extra-marital associations and then pass the virus to their wives. The wife becomes stigmatized as a presumed sex worker while the community is silent about male promiscuity. Nor is silence characteristic of local communities only. There is speculation that certain Islamic countries may under-report HIV prevalence due to concerns that the nation as a whole will be stigmatized by other nations in the world community, or by other nations of predominantly Islamic faith.28 The antithesis of silence is, of course, open discussion of sex and of HIV/AIDS in particular. Many believe that a chief reason why Uganda was able to reduce HIV prevalence so impressively is that, with the strong encouragement of the government and institutions of society, including the religious groups, the people had open, candid discussions with family, friends, and neighbors about the terrifying phenomenon of HIV/AIDS.29 This highly successful strategy was based upon community trust, which it in turn strengthened. One factor supporting the continuation of stigma-related silence and lack of public transparency in much of Africa is distrust of western medical theories and western medicines.30 Some believe western HIV tests will result only in stigma, or that western medications will kill them. These seem to be warranted assumptions since many who finally ask for tests and treatment (if available) are by that time quite gravely ill. Therefore many are reluctant to seek VCT and so live in silence about their concerns,
  • 12. Paper I: HIV/AIDS-Related Stigma 9 Glimpse of A Hero. “She is my very sister, so being a brother I find it difficult to undress her and look at her nakedness when changing her soaked dresses. It’s like a taboo for a brother to see the nakedness of his sister. My older sisters have all gotten married and gone to live with their husbands. It has become difficult if not impossible for them to abandon their marital duties. I am handy to help my sister despite all odds. I have smaller sisters who are however afraid to come close to see their sick sister.” - An African young man25 perhaps colluding with the stigmatization of people sicker than they who must have “sinned” while contracting HIV. An important datum at this point is that most relatively well-nourished adults could be living with HIV for several years before developing the visible symptoms of AIDS-related opportunistic infections. The lack of understanding that one can have and transmit HIV while appearing healthy, coupled with mistrust of western medicine, has greatly limited the effectiveness of antiretroviral (ARV) treatment programs.4 This has meant too few being tested for HIV infection, it has made greatly inhibited the needed openness of African communities for discussion of all STIs, and it has strengthened the power of stigma. The complexity and tenacity of stigma may mean that a sound, effective HIV prevention strategy could strangely become part of the stigma problem. For instance, the widely recommended ABC formula (Abstain from sexual contact, Be faithful to one’s spouse, and if you can’t or won’t, then use Condoms) is of crucial importance for reducing the number of sex partners and raising the age of sexual debut. But it may inadvertently abet stigmatization since an HIV infection frequently implies “promiscuity” or unfaithfulness, both “sins.” 31 Stigma and Particular Groups in Africa Women: It is widely expected that women will become pregnant and bear children, and that they will without hesitation fulfill the sexual desires of their husbands.32 These expectations are supported by the threat of stigma if a woman cannot or will not comply. The traditional assumptions greatly predispose women to HIV infection since, in all too many cases, the husbands carry HIV and barrier methods of disease prevention, such as condoms, are proscribed, both because they may reduce the man’s sexual pleasure and they will likely prevent pregnancy.33 A woman living with HIV may be doubly stigmatized – as a PLWHA and as a presumed sex worker. “How otherwise could my wife become HIV+?” asks the husband. A double standard in parts of Africa allows men to be sexually active with several women, or be polygamous, while wives are denied comparable freedoms.34 Women seeking HIV information, VCT, prevention of mother to infant HIV transmission, or treatment services, may be subjected to violence by their husbands, whereas men seeking the same services are not nearly so susceptible to this. Some women are subject to violence if they ask their husbands to be tested for HIV, or if they refuse a sexual overture, or if they ask their husband to use a
  • 13. Paper I: HIV/AIDS-Related Stigma 10 Glimpse of A Hero. “What will happen to my children? Who will they become?” - A young Malawi father of a 10-year old and a 2-year old. His T-cell count was 84 in June 2003 as he prepared to disclose his HIV status publicly. condom. A woman who exhibits the independence needed to protect her health and self- esteem risks the disapprobation of her family and the community. Women are frequently unable to take their children from the husband, and so feel obliged to stay in abusive relationships. Despite overwhelming evidence to the contrary, women are frequently stigmatized for being the vectors of HIV transmission. (In an alarming twist, males are sometimes under social pressure to have a high number of sexual relationships and a large number of children.35 A man risks being stigmatized if he does not.) A woman may be dispossessed altogether if her husband believes her to carry HIV. If her husband should die, her in-laws may blame the widow and seize all her inherited possessions.23 Whether dispossessed or not, many widows have a difficult struggle to survive, and to help their children survive. Older women and young girls providing home-based care to PLWHA are frequently impoverished, malnourished, exhausted, stigmatized, and isolated. They feel depressed and ill equipped to provide care. Young girl caregivers frequently drop out of school due to ridicule related to the PLWHA.4, 23 Children and Youth: Teachers and other adults all too frequently push boys and girls into sexual activity. This is especially risky for girls who are preyed upon by male teachers and other men (“sugar daddies.”)36 Resisting this may give rise to scorn against the child. Children orphaned by AIDS are usually quite traumatized and have few with whom to talk about their emotional pain. On top of this may come ridicule and ostracism from school peers and sometimes from others in the community. Schoolmates may torment children associated with people living with HIV/AIDS because of stigma. Teachers may tease them as well. Food may not be shared with such children. A child living with HIV is particularly vulnerable to this. Some schools will not accept, or keep, sero-positive children. In Malawi, however, GAIA’s experience indicates that it is unusual for family members to discriminate against surviving AIDS orphans in terms of nutrition or other aspects pertaining to physical wellbeing. Anecdotal reports from other countries, however, imply that this may change due to increasing numbers of orphans and very limited food supply. What such orphans experience emotionally due to AIDS- related stigma has not yet been chronicled. Health Care Providers: Doctors, clinic officers, nurses, counselors, and laboratory technicians all have been known to stigmatize PLWHA.4 Some health care personnel will not treat or even approach a PLWHA. Some act in a condemnatory way toward PLWHA, and some will not let their children play with the children of a PLWHA.
  • 14. Paper I: HIV/AIDS-Related Stigma 11 Glimpse of A Hero. “If God is really punishing people with sickness for their sins, don’t you think the perpetrators of war, terrorism, and nuclear destruction would at least get herpes?” -Episcopal Bishop Paul Moore (Cited in Bonneau N (1992) Reflexions sur le mystere de Dieu et la crise du sida. Eglise Theol. 23:305 (fn.48, at p. 317). When health care providers stigmatize, or are thought to stigmatize, people will be reluctant to visit the test center for VCT and treatment, if available.38 This is highly unfortunate, since VCT is the essential first step in so many stigma-reduction and HIV prevention and care strategies. Stigma thus blocks the essential first step by the PLWHA toward living responsibly with HIV. The fear that testers or others in health care may disclose one’s HIV status is considerable. Gossip is a danger in villages, and where, as opposed to western urban centers, anonymity is very difficult if not impossible to guarantee. Traditional Healers: There are many more traditional healers (sometimes referred to as “witch doctors”) than western health care providers in Africa, and many of these are engaged in practices that do not help, and may hinder, the health of PLWHA.30 Some healers inappropriately pronounce people uninfected by HIV, thus adding to denial. And yet the operating theories of illness causation promoted by healers (witchcraft, offense against a dead ancestor, breaking of a taboo) are attractive in that they provide hope of cure, or at least relief, when western notions of HIV/AIDS do not, particularly if antiretroviral medications are not affordable or otherwise available. Some attempts are being made by traditional healers, governments, and western medical people to encourage greater cooperation among all groups.39 The hope is that eventually traditional healers will provide a strong referral source to western HIV testing and treatment centers. If this strategy succeeds, it seems reasonable to suppose that the levels of stigma in villages will decline. Religions: Some people in Africa believe that traditional social mechanisms once functioned effectively to deal with sexuality, but that these were wrongly uprooted or significantly changed by the missionary religions.40 The scope of this paper is not broad enough to include an analysis or whether western or traditional religions are more responsible for HIV/AIDS-related stigma. But it seems fair to say that clergy and other religious leaders are as susceptible as any to the temptation to exercise power over others. These tendencies are facilitated by structured inequalities (clergy over lay, more spiritual over less spiritual, more morally pure over less so, and the like.) On this account, religious groups have a marked inclination to stigmatize, and discriminatory attitudes and behaviors against PLWHA “sinners” are an instance of this. Many Christians and Muslims believe that living with HIV/AIDS implies promiscuous, or sinful, behaviors.4, (“There is the attitude that they deserve it [HIV] because they did not take the precautions,” we were told by a Malawi minister.) It is thus not surprising that many PLWHA have been pushed out of religious congregations, or have excluded themselves, because of discriminatory attitudes and behaviors.
  • 15. Paper I: HIV/AIDS-Related Stigma 12 A somewhat sweeping view is that congregations have colluded in stigmatization by their silence on sexual matters in general and have thereby exempted themselves from the struggle against HIV/AIDS.32 Religious leaders presiding at funeral rites typically do not mention that the deceased died of AIDS-related illnesses, though this is usually out of respect for the fears of the family. African Christian organizations, under influence from western missionaries, tout a trite evangelical theological paradigm - (good) creation – (bad) fall - (good) redemption (for the chosen) -- that buttresses tendencies to categorize people as saved or sinner, pure or impure. In its way this feeds stigma directly by blaming those who are bad, and it indirectly strengthens the broader social stratifications within which stigmatizing flourishes.
  • 16. Paper II: Anti-Stigma Interventions 13 Paper II: Anti-stigma Interventions Needed in Africa Introduction Stigma has been part of the human experience since the memory of man runneth not to the contrary, in the quaint phrase of the lawyers. It is not likely to be eradicated, but it can be managed. In light of all the descriptions in the first paper, we need to find comprehensive, realistic, and if necessary, incremental ways to help those affected by stigma cope with it. We need to mitigate it in the broader society. Mitigating stigma and its effects is best attempted when stigma’s multiple functions in society are addressed in a coordinated fashion, or if that is impossible, when its multiple functions are understood and expressly articulated in teaching contexts. For instance, in attempting to empower a stigmatized person one can usefully describe stigma’s role in the dominance-subordination dynamics of hierarchical society. This has the potential of facilitating within the shamed person a liberating recognition that the problem is with the intolerance of others. This paper has two parts. The first begins with four guidelines that should be kept in mind when undertaking anti-stigma interventions at any level, due to the complex and overlapping aspects of the stigma problem in individual and corporate life. National- level priorities are then specified, and these are followed by specific proposals concerning governments and their leaders. Empowering individuals living with HIV/AIDS is crucial in dealing with stigma, and several strategies are proposed to do this. These are followed by recommendations to change stigma-related aspects of public life at village levels, and particularly at health clinics. Suggestions are made as well for training programs in stigma reduction. The second part of this paper deals exclusively with the importance of religious groups in mitigating HIV/AIDS-related stigma. Given the profound influence that religious groups have in Africa, the recommendations provided therein for religious groups could contribute greatly in the fight against HIV/AIDS-related stigma. The second part of the paper concludes with a theological guide to discussion intended to serve the needs of religious leaders and members of religious organizations concerned about HIV/AIDS-related stigma. Part One: Recommendations for Governments and Civil Society Four Guidelines for All The following four guidelines describe key areas of importance that all persons should remember when working to mitigate HIV/AIDS related stigma. Negotiate Hierarchy. Teaching people how to cope with stigma should emphasize that stigmatization is fueled by social stratification, where some are in
  • 17. Paper II: Anti-Stigma Interventions 14 Learning point. Discuss this statement by UN Secretary General Kofi Annan: “Speaking openly about the epidemic is the first step to winning the fight against it. Silence is death. People need to know that they can be tested without shame; that if they are infected, they will be treated; that if they fall ill, they can live safe from discrimination.” dominant and others are in subordinate positions. It is difficult to imagine stigma and discrimination effectively being carried out against a dominant group by a subordinate one, but it is relatively easy to see how stigma directed downward helps to enforce hierarchical privilege. The social analysis of stigma could be an important part of empowering targeted people, for it tends to shift responsibility for oppression from the blamed to the intolerant. Within health care and religious systems, themselves hierarchical and set within the wider hierarchical society, service providers are no less susceptible than anyone else to dominance-subordination impulses that amplify rather than diminish the power of stigma. It is thus important for religious and health care personnel to deal continuously with their own tendencies to stigmatize as an essential part of HIV prevention, treatment, support, and care. Follow The Ugandan example. For some time the nations of Sub-Saharan Africa have valued Uganda’s success in reducing HIV/AIDS prevalence, since it may helpfully be applicable elsewhere on the continent.29 The earnestness of other Africans concerning the Uganda experience means that the country’s models hold considerable power as strategies ready to be taken up. It is therefore significant that Ugandan President Museveni believes his country’s success in prevalence reduction is primarily due to transparency, openness, and in particular, frank discussion about HIV/AIDS and human sexuality. Stigma cannot flourish under such circumstances, when silence, shame, secrecy, and denial are weakened or altogether absent. President Museveni has said, “As opposed to other cultures that tend not to appreciate their own problems and keep quiet, enduring suffering silently, we come out in public using all sorts of forums…. I had to impose it on my people to use forums like political rallies, church congregations, school assemblies, sports festivals to always talk about HIV/AIDS…. This approach helped us to keep our population aware and hence the present day [beneficial] results due to behavioral change.”42 The importance of this cannot be over-emphasized. Transparency’s opposite, and deadly, condition is silence. A prominent International Red Cross official remarked that it was not a coincidence that Swaziland now had the world’s highest HIV prevalence since it is also where there is no public discussion of HIV/AIDS.43 Frame Public Policy. The best assurance of transparency is a government committed to the same with a legal and policy structure in place to enforce this. Unfortunately, it appears that a number of Sub-Saharan African countries have no such measures protecting vulnerable groups, nor legislation with which to fight against stigma and discrimination. Where there are not yet such protections and resources, an all- encompassing framework should be installed to protect vulnerable people from the effects of stigma and discrimination. Such a framework, appropriately enforceable,
  • 18. Paper II: Anti-Stigma Interventions 15 would improve the future chances of success when enacting any single anti-stigma intervention at any level of society. Empower People Living with HIV/AIDS (PLWHA). The ideal intervention will address the multi-faceted stigma problem at all levels of society. When a comprehensive strategy cannot be undertaken, attempting to empower PLWHA should be the first priority. The suffering of stigmatized people cries out for relief on humanitarian grounds, and empowered PLWHA can be a vital force in changing the opinions and behaviors of others throughout society. PLWHA should be personally empowered by competent counseling, on a continuing basis, and couched within a human rights framework. Recommendations for Societies at the National Level The following are goals that nations should pursue, under pressure from citizens’ organizations and religious groups: Respect Universal Human Rights: Update all national laws and policies in accordance with universal human rights, defined in the present context as rights belonging to all people without regard for health status, sex, language, national origin, age, class, religion, political belief, color, or race. To this end, ensure that coercive measures related to public health – e.g., “mandatory HIV testing” for employment, marriage ceremonies, or scholarships – are not permitted. Implement HIV/AIDS Specific Legal Protections: Enact laws and policies to protect all PLWHA from stigma and discrimination; specifically: • non-discrimination policies in health care systems, religious organizations, employers, and all other institutions of public life; • right-to-privacy policies that guarantee protection of people accessing voluntary counseling and testing (VCT) and treatment facilities with particular focus upon health care providers; • In addition, specialists should be provided to the public gratis for legal advocacy and redress in connection with complaints of stigma and discrimination. Protect Women: Enact well-publicized and well-enforced laws to guarantee women equal status with men, and to punish violence against women. These include the protection of women’s rights to inherit property, not be regarded as property themselves, not to be inherited by family members and to have custody of their own children. Provide Access to Medicine and Nutrition: Make available antiretroviral medications, opportunistic infection-fighting drugs, prevention of mother-to-infant HIV transmission medications and services, and nutrition education and food resources to all in need of them. Antiretroviral drugs must be available, since they have the capacity to transform HIV infection as a death sentence into HIV as a chronic illness, reducing the stigma of the disease and stimulating people’s willingness to be tested and disclose their status.
  • 19. Paper II: Anti-Stigma Interventions 16 Learning point. People’s apparent “knowledge” of HIV/AIDS does not necessarily mean that they understand, or have appropriated, such data as how being infected with HIV differs from having AIDS symptoms, how one can be HIV+ and transmit the virus to others while appearing healthy, that opportunistic infections are treatable if drugs are available, that some forms of presumed transmission – through caring for a PLWHA, for instance – do not occur if a person follows simple precautions, and so forth. Encourage National Participation of PLWHA: Aggressively recruit people living with HIV/AIDS to serve in all sectors, at all levels of planning and implementation of public and private policies and programs concerned with HIV/AIDS prevention and care. Recommendations for National Governments The following are programs and policies that national governments should implement as part of a multi-level approach to mitigating stigma: National Counter-Stigma Training: Provide competent training in stigma mitigation and anti-discrimination to all sectors of society, including health, religion, education, and commerce. Empowerment Training and Advocacy for PLWHA: Ensure that competent and accessible personal empowerment training, support, and advocacy groups are available throughout the country for people living with HIV/AIDS. Youth Appropriate HIV Services: Make youth-accessible services available to all young people for HIV prevention, VCT, and treatment. Cabinet Level Participation of PLWHA: Install and empower one or more people living with HIV/AIDS at the cabinet level of government to be an effective advocate and ombudsperson for people living with HIV/AIDS. The person’s position should not be dependent upon the goodwill of any government official or any other person or organization influenced by any government official, or his or her representative. Scientific HIV/AIDS Education: Ensure that competent, comprehensive, and contextualized educational programs are delivered to adults, youth, and children throughout the country on a continuing basis. These should convey scientifically accurate information on HIV/AIDS in simple, clear and compelling ways. Public VCT for Political Leaders: Political leaders should take HIV tests as a means for reducing stigma, demystifying HIV, and encouraging others to be tested. The testing should be voluntary, and widely publicized after it is completed. (Malawi President Muluzi announced in the spring of 2004 that he had been tested, with a negative result. He is almost unique among political leaders in doing this.44 )
  • 20. Paper II: Anti-Stigma Interventions 17 Learning point. Consider this account of competent counseling, as reported by one gentleman from Zambia: “I approached an elder in our church who recommended that I take the test. So I went for counseling at Kara Counseling in Lusaka. There I found a very understanding person who helped me get information on HIV/AIDS and who walked me through what a positive result could mean. He asked me questions I had never asked myself. He asked me how I would cope if the result were positive, and who I would tell. Because of his openness to me I was willing to pour myself out to him. I don't remember half of what I had said to him but I do remember that he was willing to listen to me.” --Etambuyu Imasiku (Quoted on [stigma-AIDS] Self-stigma and HIV/AIDS, January 7, 2004 available at http://archives.healthdev.net/stigma-aids/msg00078.html) Recommendations for Empowering People Living with HIV/AIDS The following are recommendations for those living with HIV/AIDS and those working at any level to empower PLWHA. Link Counseling to VCT: Link counseling with the simultaneous offer of membership in a support group for optimum effectiveness. Support groups should be available in close proximity to VCT facilities. Networks of AIDS counseling, support, and advocacy organizations should be established and supported to improve service to PLWHA and their care-givers, and create public attitudes of greater acceptance. Disclose Sero-Status: PLWHA can also be empowered by disclosing their sero-status – with appropriate support and on the basis of free and informed consent. Disclosure helps to reduce the stress of coping, it enables more free access to treatment centers, it reduces the oppression of silence and stigma, and it is frequently empowering. Disclosure Must Be Voluntary and making decisions to disclose or not is a continuing process. The decision to disclose or not, and to whom, clearly belongs to the individual, who may have valid reasons for not disclosing, or for disclosing only to some people. • There are well-known risks of rejection, or worse, particularly for women. It is crucial that PLWHA be supported and empowered to disclose only if they so desire. • Disclosure to one or more family members can be of vital importance to the PLWHA, and this frequently results in a supportive response. • High profile public personalities disclosing positive sero-status serve as role models to other PLWHA. Use Memory Books: Disclosure to children can be facilitated by memory books, written jointly by mothers and children.45 These can also help to convey HIV information to
  • 21. Paper II: Anti-Stigma Interventions 18 Glimpse of A Hero. “At his funeral, my grandmother walked to the front of the church and laid her hand on her grandson’s coffin and said, ‘My grandson no longer has to suffer with AIDS.’ Then, with her hand still on his coffin, she turned to the pulpit and said to the preacher who was about to preach to the people gathered in the church, ‘Now… talk to them freely about this disease. To us it is not a shame.’” -Maake Masango, (Plan of Action: The Ecumenical Response to HIV/AIDS in Africa World Council of Churches Global Consultation On the Ecumenical Response to the Challenge of HIV/AIDS in Africa, Nairobi, Kenya 25-28 November, 2001. Available at www.e- alliance.ch/resources/documents/pdf/wccpaf.PDF) children, including the positive sero-status of a parent (or child) and they can enable discussion aimed at reducing felt stigma by children and child-survivors of PLWHA. Use Open Funerals: Attendees at a funeral for one who has died of AIDS may be more receptive to anti-stigma messages and as such, disclosure of the cause of death at the funeral can be a way for family members to contribute to the fight against the disease. However, disclosure must still be voluntary and the decision to disclose should be made in advance. The person who is soon to die of HIV/AIDS should have the opportunity to choose or not choose disclosure for after their death and family members should not be pressured to disclose while in the throes of grief and loss. For this reason, support mechanisms for the family should be in place after disclosure occurs. Focus on Fighting Stigma as A Long-Term Struggle: Since the dynamics of stigmatizing attitudes and behaviors are deeply rooted and tenacious in individuals and communities, a stigmatized person should be helped to understand and accept that fighting stigma means actively and continuously opposing it. Redirect Stigma: An important stratagem for empowering PLWHA is to assist them to grasp that stigma is about intolerance, not the actions or the character of the stigmatized. This is a crucial and liberating concept. Use Positivity for Empowerment: PLWHA can strengthen a sense of self-worth by committing to doing good in the community. Being a contributor, a giver, greatly improves self-esteem. A specific focus for serving the community is to become a public advocate for PLWHA, for anti-stigma campaigns, for voluntary counseling and HIV testing, for home-based care, and so forth. Becoming an activist against the structured inequalities of society, which are the seedbed of stigma, could be an appropriate commitment, provided one astutely measured the magnitude of the challenge and its possible personal costs. Recommendations for Changes in Public Life The following are goals that communities should pursue in combating stigma.
  • 22. Paper II: Anti-Stigma Interventions 19 Engage in Open Discussion About Sexual Health: Regular and repeated public discussions in all social institutions and contexts about HIV/AIDS and sexual health in general would help to lift enacted and felt stigma related thereto. • Factually accurate and repeated public discussions for and by youth would go far to help with HIV prevention efforts among the not-yet-infected. They would also undermine secrecy and denial, on the basis of which stigma flourishes. Support PLWHA as a Community: Community support for PLWHA, when done in such a way as to not reinforce stigmatization, can uplift all community members in the fight against HIV/AIDS. Communities can exempt PLWHA from water and school fees, they can create communal gardens for PLWHA and their families. Community volunteers should repair dwellings of PLWHA and form burial associations to ease the financial burdens for survivors. Promote Positive Media Images: Public media should communicate messages humanizing PLWHA, including stories of and by PLWHA. They should also disseminate HIV-related prevention, transmission, testing, anti-stigma, and care information. Recommendations for the Health Sector The following are recommendations for those involved in the health sectors of Sub-Saharan African countries to: Enfranchise Traditional Healers: These should be engaged in a process of education, mutual respect, and collaboration leading to reduction in stigmatizing attitudes and behaviors, and an increase in referrals for HIV diagnosis and treatment. Protect Patient Confidentiality: As part of scrupulously protecting patient confidentiality, patients being tested or treated should be informed of their rights, including privacy rights, and the means by which to file effective complaints of violation of these. Train Health Care Personnel: Health care personnel should be trained in stigma reduction, and in ways to counter tendencies to dishonor patient privacy. They should also be trained thoroughly in HIV pre- and post-test counseling, continuing counseling support, and in the overall needs of PLWHA. Such counseling should be rights-based and coupled with the encouragement to join an AIDS support organization for continued support. Considerations for the Conduct of Stigma-Reduction Training The Objectives of Stigma-Reduction Training are to enable awareness of the dynamics of HIV-related prejudice, stigma, and discrimination; understand the damage stigma can do to individuals, families, and communities; specify appropriate attitudes of
  • 23. Paper II: Anti-Stigma Interventions 20 acceptance and support for PLWHA; design and enact anti-stigma programs in organizations and institutions. If possible, people studying ways to reduce stigma should visit homes of PLWHA and institutions where stigma has been addressed successfully. In addition, PLWHA should be involved in the planning, execution, and evaluation of all educational interventions. Confidentiality should be assured for all participants in anti-stigma training programs. Good trainings enable discussion of the scientific facts and myths about HIV transmission routes and patterns, irresponsible media reports and what to do about these, and relevant statements by public figures. Strategies should be devised particularly to mitigate the blame of PLWHA, to mitigate wives being accused of infecting their husbands, and to mitigate women being thought of as witches. Behavior change is more likely when more than one pedagogical mode is used. For instance, knowledge acquisition should be supplemented by imparting counseling or coping skills at the same time. A helpful teaching device is to enable discussion of fears related to HIV. For instance, groups can: • Discuss notions contributing to HIV-related stigma, including which kinds of people are most likely to be stigmatized, and why stigmatizing remarks are taken as true. • Discuss the tendency to divide people into “us” and “them,” how this division is enabled by social stratification, and how societies can be changed to become more humane. • Discuss self-stigmatization and what it feels like or would feel like if one were a PLWHA. Interactive educational strategies tend to be more effective than passive ones. Experience-based group discussion and role-play, for instance, are helpful for both attitude change among citizens and coping skill development among PLWHA. • People can be invited to imagine and then recount instances in which they felt stigmatized and/or discriminated against, and then to explore these for application to stigmatized PLWHA. It is reasonable to suppose that interventions designed to mitigate stigma among health providers and strengthen coping skills among PLWHA may require sustained reinforcement. Short-term attitude changes may occur after a stigma-reducing educational intervention, but deeper fears frequently remain untouched. Regular contact with a PLWHA, coupled by continuous educational reinforcement, may be helpful.
  • 24. Paper II: Anti-Stigma Interventions 21 Part Two: The Importance of Religious Groups In Mitigating HIV/AIDS-Related Stigma It seems settled that a strong majority of African people belong to religious organizations. The religious groups are deeply embedded in local communities and cultures. In some countries, they provide relatively high quality health care through hospital and rural clinic delivery systems, many of which are front-line service providers where VCT is being done, or can be done. Religious groups frequently deliver important social services such as orphan care and home-based care. They are thus in a position to know the devastation of stigma and discrimination and to have the knowledge base to describe and object to its dehumanizing effects. Through their infrastructures, religious groups are in a position to deliver sustained support to stigma-reducing interventions that they undertake. Furthermore, religious leaders frequently have local moral authority in their communities to be anti- stigma opinion leaders and change agents. Despite well-known attitudes and behaviors to the contrary, religious groups are custodians of heritages that value the whole person, commend caring for people who are sick, valorize compassion, and honor community service in general. Compassionately applied lessons from religious heritages can provide a conceptual basis for challenging stigmatizing tendencies of certain African traditional notions of disease transmission. Given all of this, below are a number of recommendations specific to religion organizations involved in the multi-layered and coordinated approach to HIV/AIDS related stigma mitigation. Recommendations for Religious Organizations Build on the Ugandan Example: The Ugandan Anglican Diocese of Namirembe has set a standard for creating and sustaining a comprehensive strategy for dealing with HIV/AIDS.46 • Each local church is obliged to have 60 volunteer educators and home-based care providers trained in the various aspects of HIV/AIDS, reproductive health communication, counseling skills, and home based care (HBC) for the sick and dying. A third of the volunteers are Sunday School children, 20 more are from the youth fellowship, and the final 20 are adults. Each peer educator speaks with 5 other people about HIV/AIDS and general health each month. In the 520 congregations of the diocese they reach 1,872,000 people in one year. Moreover each of the 60 educators provides direct service by cleaning dishes and clothes of sick people, works in the yard, fetches water, harvests food, delivers nursing care, and supports the bereaved. • The diocese applies itself forcefully to stigma-reduction strategies through post- HIV test clubs, where information, support, assistance with disclosure, advocacy campaigns, Bible study, income generating activities and sensitization programs are based. The diocese also advocates building and maintaining a clinic in each parish currently lacking one. These are to enable diagnosis, treatment, referrals,
  • 25. Paper II: Anti-Stigma Interventions 22 Learning point. Since HIV/AIDS is interlinked with human sexuality, reports have often indicated that the best way to fight stigmatization is to talk openly about sexuality. Kenya Muslim Supreme Council's Sheikh Al Haj Yusuf Murigi said, "Break the silence on sexuality to enable open discussions on HIV/AIDS and everything related to it." (Mulama, J. (September 24, 2003. Human Rights: A New Wall of Stigma Proving to Be a Setback in the Fight Against AIDS. Inter Press Service. Available at http://www.aegis.com/news/ips/2003/IP03 0924.html) maternity care, HBC support, and VCT. The parish raises the money locally to pay visiting physicians and purchase instruments, drugs, and supplies. A health department is established in the bishop’s office. This undertakes HIV/AIDS workshops throughout the diocese, does on-going monitoring and evaluation of local programs, collaborates with the government and NGOs, and integrates health issues into liturgies. Offer Hope: Re-building self-esteem among the stigmatized, and offering hope, may be the most important of religious tasks. The resources of the Christian heritage for doing this are considerable, as will be illustrated below. Stay Informed and Involved: Religious leaders should regularly avail themselves of accurate and timely information on HIV/AIDS, and disseminate this aggressively. They should above all see themselves as healers in the sense of health care education, prevention education, stigma reduction, and on a broader social level, as healers of society and advocates for full human rights for all. Talk About Sexual Health: Congregational leaders should speak openly, compassionately, and non- judgmentally about sex, HIV/AIDS, stigma, and the ways that class and gender-based social stratification facilitate stigma -- during worship, in adult and youth educational programs, and when leaders visit parishioners. Bring the Leadership on Board: In hierarchical churches, thoroughly bringing the bishops on board with anti- stigma strategies and imperatives is a high priority. Leadership at the highest levels will make leadership at the local level more effective and more sustained. Volunteer for Counseling and Public HIV Testing: Religious leaders can be persuasive concerning VCT when they themselves have been tested, so they should be tested with widespread publicity that they have done so. Include People Living With HIV/AIDS: Churches should put PLWHA into prominent positions of leadership and planning at all levels and across all areas of the church’s life. • Congregations should support individuals and families living with HIV/AIDS by visiting, providing home-based care, and by treating them with the same level of respect accorded to others.
  • 26. Paper II: Anti-Stigma Interventions 23 • Congregations should facilitate and support carefully planned disclosure of sero- status when the PLWHA has decided to disclose. Particularly when a wife discloses her sero-status to her husband, having supportive religious leaders on hand can be protective and stabilizing. • PLWHA should be encouraged and supported in giving testimony in worship and other religious gatherings concerning their needs and concerns. • Religious groups should develop and implement rituals that honor PLWHA and all who have died of AIDS-related illnesses. One stigma-weakening and silence- breaking religious ritual has been to light a candle and name a loved one who has died because of AIDS-related illnesses. Work for Gender Equity: The above information should be presented in ways that are supportive to women, empowering women and girls, inculcating respect of women on the part of men, encouraging safe behaviors and encouraging accessing health facilities for STI and HIV counseling, testing, and treatment. • Religious organizations should re-frame the institution of marriage so as to make it gender-justice-based. During pre-marriage counseling and in all public ways, religious leaders should strive to ensure that women have the right to refuse sex, to insist upon the husband being HIV tested (and upon being told the test results,) and to demand condom use if wives so desire them. • Commensurate with spoken support of women, churches should ensure that women are proportionately represented in leadership positions, and should work toward gender equality in churches, families and communities. A vital, specific objective is to establish and sustain the right of women to negotiate sex. • Religious leaders should regularly remonstrate with practitioners of traditional ceremonies that expose young people to HIV infection and/or socialize girls or women to subordinate roles. Educate for Dignity and Compassion: Religious educational programs should describe the dynamics of prejudice, stereotyping, stigmatization, and discrimination, and should be framed in the context of human dignity or the sacredness of human life – analogues of a sort to human rights-based discourse in the secular sphere. In particular, religious educational programs should expressly apply Biblical themes of reconciliation, compassion and care for the sick and the stigmatized (in the Bible, lepers, gentiles, “sinners,” and the like) to HIV/AIDS-related stigma. Integrate With Other Providers: Religious organizations should strengthen their relationships with government, NGOs, and health providers, for construction and/or improvement of referral networks and more effective delivery of confidential HIV prevention, treatment, care, and anti-stigmatization services and support.
  • 27. Paper II: Anti-Stigma Interventions 24 Provide Advocacy: Religious groups should be advocacy organizations to hold governments and health systems accountable to prevent stigma and discrimination, and to provide redress when someone is victimized. They should also be advocates for access to ARVs and opportunistic infection-fighting medication. Provide End-of-Life Care: Congregations should initiate palliative and end-of-life care programs. Respecting and supporting people dying of AIDS-related illnesses does much to mitigate stigma. Include HIV/AIDS training for Clergy: Theological and pastoral counseling and care training programs for prospective and ordained clergy should contain appropriate course content pertaining to HIV/AIDS and its various prevention and care aspects, including stigma. Examine Liturgical Language: Liturgical language should be scrutinized and if necessary amended to ensure that it is non-stigmatizing, gender inclusive, and expressive of solidarity with PLWHA. Support Income Generating Activities: Congregations should support income generating activities for PLWHA and their families. Support Child-Headed Households: The stigma that frequently attached to child- headed households can be weakened by publicly and caringly providing support to child- survivors in PLWHA households. Theological Discussion Guide The following section provides discussion points that relate to certain Christian theological emphases in the context of HIV/AIDS and Stigma. It can be used for oneself as a guide to thinking and self-evaluation. It is also intended as a guide for discussions with others, be they religious leaders or lay people of Christian faith. The Sick Helped To Found Christ’s Community Read and discuss: In a religion that believes there is only one deity, the deity is thought to be ultimately responsible for all illness. In the Hebrew Scriptures, Deuteronomy 28 says that health is related to covenant faithfulness, but illness means one has violated the covenant, which is sin. Illness thus implies disfavor with the Divine, so the suffering person reviews his/her behavior and implores forgiveness and healing. But not only for one’s own sake. In early communities the health or illness of one implicated the health or illness of (and the Divine favor or disfavor toward) all. Ancient Near Eastern views of illness causation of course included no scientific understandings of disease transmission that are taken for granted by many in the west today. Chronically ill people were typically banished from the community – not so much out of fear of contagion as from a need to protect the moral purity of everyone else. Those thus banished constituted a ready pool of people attracted to Jesus, who welcomed
  • 28. Paper II: Anti-Stigma Interventions 25 all the outcast, and therefore the stigmatized ill, into citizenship in his “kingdom” (community.) People who were ill formed an important part of the earliest Christian movement. The Sick are Created in, and Live in, the Divine Image With reference to present-day stigmatized, devalued, and outcast people, read and discuss the “image of God” in Genesis 1: 26 – 28. Here all are created in the divine image without qualification or exception. If all people, including the sick, are created in the image of God, what does this imply for the dignity of all people? Also discuss “in the image of God, male and female He created them.” Does this state that women are created in the image of God and are thus entitled to the same respect accorded to men? In the Struggle for Human Solidarity, Good is Always on the Side of the Unjustly Oppressed Read and discuss: A foundational account in the Bible of the emergence of Israel as the people of God begins with the oppression of Hebrews by Egyptian leaders. As recorded in the book of Exodus, the living God reached down into history “with a mighty hand and an outstretched arm” to set the oppressed free. The same Power led them into a condition of security. From this we know that the One to whom the Bible points is known as a partisan of the vulnerable in the struggle against oppression. Illness Afflicts All Kind of People, Regardless of “Sinfulness” Read and discuss: The author of the Book of Job did not believe that illness resulted from sin. The Book of Job challenges punishment theories of illness because Job’s suffering is not the result of sin. Job was a righteous man yet he suffered terribly, therefore the righteous suffer like anyone else. This view of the innocence of the suffering was accorded the status of divine revelation by its inclusion in sacred scripture. Jesus Blesses Those Who Work for Justice Read and discuss Jesus’ sermon on the mount (Mt 5:1ff), a kind of charter for the new community. The beatitudes, the blessings, serve as a listing of the people who, despite the world’s way of valuing the privileged, are TRULY honored and honorable. Notice the characteristics of THIS people: the poor in spirit, those who mourn, the meek, the people who hunger and thirst for righteousness (which means making right what is wrong in the world), the merciful, the pure in heart, the peacemakers, and people persecuted because they were righteous (the people who were fixing things for the greater justice of all). Where do people who work for the justice for sick people fit into the community of the blessed?
  • 29. Paper II: Anti-Stigma Interventions 26 Jesus Objected to People who Judge, Stigmatize, and Exclude Discuss the antipathy between Jesus and the Pharisees, and apply this to present- day tendencies to judge, stigmatize, and exclude. The Pharisees are those who claim to know good and evil, and who believe that differences between the “sinner” and the person struggling toward the good matter decisively. Analyzing and categorizing people as acceptable, discredited, pure or impure, is the Pharisee’s defining characteristic, and this is what Jesus continuously objected to. Jesus Joined His Cause to the Cause of the Stigmatized What does it mean that in churches the cross – an instrument of state-sponsored execution -- is the most central religious symbol? Discuss the cross as symbol that Jesus joined himself to stigmatized “sinners,” making their cause his cause, and being condemned to die by the powerful outside the city walls. (This is as opposed to notions of the church, built upon Jesus, as a community of the allegedly pure and excluding people adhering weakly or not at all to religious rules, rituals, and expectations.) Shame as a Source of Cleansing and Newness Read and discuss the following with reference to stigma and shaming: In the letters of Paul, Jesus’ cross is also his “shame.” He was mocked and cursed. In Hebrews 13:11-14 it says, “…so Jesus too suffered outside the gate to sanctify the people with his own blood. Let us go to him, then, outside the camp, and share his degradation.” A Christian theologian, reflecting on this, says, “Jesus goes to the place of our shame to make it the place of God’s feast, the place of baptismal cleansing and newness.” What opportunities does the shame produced by AIDS bring to all of us? The Christian Sacraments as Anti-Stigma Rituals Discuss the basic Christian sacramental rites as anti-stigma rituals. Does “being baptized into Jesus’ death,” for instance, mean joining him in solidarity with all the stigmatized? Does the Lord’s Supper, the mass, or Eucharist -- Jesus’ table fellowship – bring to mind the stigmatizers’ charge, “this man welcomes sinners and eats with them”? Jesus and the Rights of Women In light of stigma and discrimination today, what does it mean that Jesus consorted with women, who had no citizenship rights, and with children, who also were without social standing? Does he consort also with children who, because of AIDS, are forced to head their own households today? Being a Good Neighbor to Everyone, Particularly the Outcast Read and discuss the “Good Samaritan” parable, presented by Jesus as a parable of the divine realm (Luke 10:29-37). It begins with the exclusivist question, “Who is my
  • 30. Paper II: Anti-Stigma Interventions 27 neighbor?” Using the example of the presumably impure (stigmatized) person (the Samaritan) who helped someone in need, it ends with the exhortation to be a neighbor to anyone in need, as the outcast person (the Samaritan) was a neighbor to the injured man in the ditch who needed help. Christian Virtues and The Treatment of PLWHA Discuss the applications of Christian virtues to character formation within the context of HIV/AIDS stigma. What does being faithful, hopeful, loving (caring), prudent, courageous, just, and temperate (possessing self-mastery) mean within congregations, communities, and families, when PLWHA are subjected to stigma and discrimination? Offering Hope and Redemption to the Sick and the Dying Religious communities offer hope that may not be available from other sectors of society. Discuss theological ideas of an afterlife, and a loving and accepting deity, within the context of HIV/AIDS and stigma. Confession of the Church Some African theologians and religious leaders have stated that stigmatizing and discriminating are sins. Discuss the Christian notion of public confession of errors and omissions of the churches, their people, and their leaders, as applied to the stigmatization of PLWHA. Discuss this with specific reference to PLWHA and discuss the following as a confession that The Church may wish to make: • The Church has promoted punishment theories of illness. It has colluded with silence and negativity regarding human sexuality. It has been sinfully obsessed with sexual purity. It has colluded with patriarchy and the subordination of women. It has been timid before unjust social structures. It colludes with fatalism. It ignores its mission to serve all in need, preferring imperialistically to convert them. It grasps after its own glory, rather than leaving this behind, emptying itself, and witnessing to a god who enhances and saves the lives of the people. It has participated in the cultural and religious imperialism of the West. Further Biblical Texts Relating to HIV/AIDS and Stigma Read and discuss the following Biblical texts: • Jesus did not believe illness was evidence or consequence of sin (John 9:1-5). • Jesus healed all diseases unconditionally, without first asking if someone sinned, or how they sinned, or whether they repented (Mk 1:29-30).
  • 31. Paper II: Anti-Stigma Interventions 28 • Jesus broke the stigma associated with leprosy and restored the lepers to physical and social health (Mk 1: 40 – 45; Lk 17:11-19). • Jesus denounced self-righteousness among the religious (Lk 18:9-14). • Jesus took sides with the marginalized and oppressed (Mt. 9:10-13; Lk 18:1-8; Mt 25:31-45). • Jesus learned from the Samaritan woman at the well – as a Samaritan and as a woman she was doubly stigmatized, but in this context she became Jesus’ teacher. (John 4:5-42) • See the platform for Jesus’s ministry in Luke 4: 18 - 20. • In the end he defeated the powers that separate people into dominant and subordinated groups, and finally defeated the power of death itself through his resurrection.
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