2. Objectives for this
presentation
• Define and discuss stigma: its background
and social mechanisms
• Address the specific features of HIV that
lead to stigma
• Consider specific factors that should be
addressed in education
3. Lesson Objectives
• Define and identify HIV/AIDS-related stigma and
discrimination
• Better understand international and national human right
issues
• Clarify personal values and attitudes with regard to
HIV/AIDS prevention and care
• Know how to address stigma and discrimination in the
context of providing HIV services
4. ‘Many people suffering
from AIDS and not killed by
the disease itself are killed
by the stigma.’
Nelson Mandela, 14th International AIDS Conference, Barcelona July 2002
5. What are stigma and discrimination?
• Stigma is literally a “mark” or a “blemish” upon
someone or something. HIV is often negatively
viewed and social attitudes may be damaging to
those infected or suspected of being infected.
• Discrimination is defined more in terms of legal
and human rights. When a person loses a job
because of the negative connotation or
impression of HIV then overt discrimination has
taken place.
11. Stigma and discrimination
• Stigma refers to unfavourable attitudes and beliefs
directed toward someone or something
• Discrimination is the treatment of an individual or
group with partiality or prejudice
• Stigmatization reflects an attitude
• Discrimination is an act or behavior
12. What are stigma and discrimination?
• Stigma is literally a “mark” or a “blemish” upon
someone or something. HIV is often negatively
viewed and social attitudes may be damaging to
those infected or suspected of being infected.
• Discrimination is defined more in terms of legal
and human rights. When a person loses a job
because of the negative connotation or
impression of HIV then overt discrimination has
taken place.
13. Our experience of
stigmatised and stigmatiser
• PART ONE: think about a time in your life when you felt
isolated or rejected for being seen to be different from others,
or when you saw other people treated this way. What
happened? What impact did it have on you? [individual, then
share: 5 mins]
• PART TWO: Think about a time in your life when you isolated
or rejected someone else because they were different. What
happened?? How did you feel? What was your attitude? How
did you behave? [individual, then share: 5 mins]
14. Self-stigma – derived from enacted (actual) or perceived
(anticipated) social experiences
• Related to knowledge of public reactions to
stigma – reflected appraisals of others
• Label avoidance
– Avoiding HIV testing
– Avoiding disclosure of HIV status
– Avoiding treatment
– Avoiding safer sex
• Withdrawal from situations where ill treatment
might occur
• Internalization of the negative label
– Reduction of self-esteem & self-efficacy
– Hopelessness and depression
– Reduced Immune functioning
15. Stigma-by-Association
Goffman called this courtesy stigma
• To some degree all of the public stigma
reactions to PLWHA are also experienced by
uninfected people who are somehow associated
with PLWHA
• HIV-related stigma affects families – shame &
disclosure concerns
• Stigma-by-Association contributes to burnout
among care-givers and health care providers
• Being associated with a PLWHA may contribute
to psychological distress
• Concern about stigma-by-association
contributes to social avoidance
16. Institutional stigma
Examples of stigmatizing government laws and
policies in the U.S.
• Until recently the U.S. government banned
individuals with HIV from entering the United
States as tourists, workers or immigrants
• The U.S. Foreign Service still refuses to hire
applicants with HIV.
•The Transportation Security Administration has
refused to hire applicants who are HIV+.
• Sexual activity by people with HIV may subject
them to criminal penalties in many U.S. states,
even when the sexual activity is consensual, the
activity involves little or no risk of transmission,
there is no intention to transmit the virus and the
activity does not result in HIV transmission.
Source: Lambda Legal Report , 2007
17. Institutional stigma
• Public stigma toward persons living with
HIV/AIDS is related to the perceived
connections of HIV/AIDS to other
stigmas (e.g., homosexuality)
• Policies of private and governmental
institutions that have a negative impact
people with these related stigmas also
serve to legitimize and perpetuate HIV-
related stigma
18. TYPES OF STIGMA
Two main types :
1-External stigma:
[the experience of being treated differently to other
people]
2-Internal stigma :
[the way a person feels about themselves [e.g.
shame, fear of rejection, discrimination]
19. Examples of EXTERNAL Stigma
• Avoidance
• Rejection
• Moral judgment
• Stigma by association
• Discrimination (the ACT associated with stigma)
• Abuse
• Victimization
• Abuse of human rights
20. Examples of INTERNAL stigma
• Self-exclusion from services or opportunities
• Perceptions of self: low self esteem
• Social withdrawal
• Overcompensation
• Fear of disclosure
21. WHAT IS SELF ESTEEM?
• Self esteem is the image of one’s own self.
• Person’s view of his worth and value.
• If this image is positive person sees himself
valuable, worth while and comfortable.
• If this image is negative he feels, worthless,
incompetent and unlucky.
22. The impact of stigma
• It creates ‘excluding behaviours’
• It isolates and divides communities
• Causes people to withdraw, putting them
beyond the reach of support services
• It generates a strong ‘us and them’
phenomenon
23.
24. Factors that can influence self esteem:
1.Previous performance.
2.Event and circumstances of live.
3.Physical appearance.
4. Judgment of significant others.
25. HIGH SELF ESTEEM
A person with high self esteem enjoys:
• Good feelings about him self
• Make others feel good
• Good decision making
• Healthy relationships
• Full utilization of his strengths and potential.
26. LOW SELF ESTEEM
A person with low self
esteem suffers from
feeling of worthlessness
and inferiority. he
• Looks at minor failures
again and again.
• Is highly critical to him self.
• Is self centered.
• Is shy and insecure.
• Misinterprets others
thoughts and actions and
make himself and others
miserable.
27. How to strengthen Self Esteem?
• Feel good about your self and nurture your
self.
• Do not run your self down.
• Bring to light your minor achievements.
• Recognize the good in others and express your
sincere appreciation.
• Accept compliment with grace.
28. How to strengthen Self Esteem?
Conti……
• Reject unconditional negative comments.
• Avoid the company of critical people. They
make you feel down.
• Join those group who are supportive and
friendly.
• Believe that God created us with all love. We
all have the qualities and positivities.
29. Root Causes
• 1.The role of knowledge about HIV and AIDS and fear
surrounding it
– Peoples believe that the fear of transmission from casual
transmission, and the various "what if scenarios" are the
result of 1) the lack of specific, in-depth information about
HIV transmission, 2) fear-based public messaging, and 3) the
evolving nature of knowledge about HIV and AIDS.
• 2.The role of values, norms, and moral judgment
– This stigma is exacerbated by the seriousness of the illness,
its mysterious nature, and its association with behaviours
that are either illegal or socially sensitive (e.g., sex,
prostitution, and drug use). Also relevant is the perception
that HIV infection is the product of personal choice: that one
chooses to engage in "bad" behaviours that put one at risk
and so it is "one's own fault" if HIV infection ensues."
30. Expressions and forms of stigma
• Ogden and Nyblade divide stigma into four loosely
defined groups: physical, social, verbal and
institutional.
– Social stigma
– Isolated from community
– Voyeurism: any interest may be morbid curiosity
or mockery rather than genuine concern
– Loss of social role/identity: social `death`, loss of
standing and respect
– Physical stigma
– Isolated, shunned, abandoned
– Separate living space, eating utensils
– Violence
31. Forms of stigma (contd.)
– Verbal stigma
– Gossip, taunting, scolding
– Labelling: in Africa: "moving skeleton," "walking
corpse," and "keys to the mortuary." In Vietnam:
"social evils," and "scum of society."
– Institutionalised stigma
– Barred from jobs, scholarships, visas
– Denial of health services
– Police harrassment (eg of sex workers, HIV-
positive actvists in China, outreach workers in
India)
32. The impact of stigma
• It creates ‘excluding behaviours’
• It isolates and divides communities
• Causes people to withdraw, putting them
beyond the reach of support services
• It generates a strong ‘us and them’
phenomenon
33. ‘HIV-related stigma is
exceptional in its scale, its
context, and its causes.’
Mary Robinson, 16th International AIDS Conference, Toronto, 2006
34. HIV stigma and culture…
Stigma is ‘written’ by powerful cultural forces: and as a social
product, exists at the intersection between power, difference
and culture…
Power
Stigma Difference
Culture
35. Stigma and the person
• Self stigma: “More deadly than the HIV living within our bodies: it
infects your mental state resulting in behaviours beyond your ability to
comprehend” [Thailand]
• IDUs: experience additional barriers to care, and exclusion from ARVs
- stigma is amplified because of the double diagnosis
• Disclosure: “Everyone seems to care and is very sorry about what has
happened, but no one comes within touching distance and no one is
willing to touch or be touched. Your whole world disintegrates within
one day” [Sri Lanka]
Source: ‘Living on the outside’ (HDN, 2005)
36. HIV stigma and place
• PLHIV experience significant stigma in the workplace,
healthcare setting, and in the religious sector - stigma exists
even in institutions purporting to offer a ‘safe haven’
• “Fear of contagion seems to be a powerful factor in
explaining…stigma among health workers, especially in
countries with weak health care infrastructure” [India]
Source: ‘Living on the outside’ (HDN, 2005)
37. HIV stigma and the media
• “The media wants to sensationalise issues…and
this becomes even more dangerous when media
personnel are not knowledgeable to start with”
[Ethiopia]
• “The media is a direct reflection of the
development and consciousness of a society”
[Ethiopia]
Source: ‘Living on the outside’ (HDN, 2005)
38. Challenge
HIV-related stigma is increasingly recognized as
the single greatest challenge to slowing the
spread of HIV/AIDS
HIV/AIDS – a threefold epidemic
• HIV
• AIDS
• Stigma, discrimination, and denial
39. Human rights
• Freedom from discrimination is a fundamental
human right
• Discrimination on the basis of HIV/AIDS status,
actual or presumed, is prohibited by existing
human rights standards
• Discrimination against persons living with
HIV/AIDS (PLWHA), or those thought to be
infected, is a clear human rights violation
40. Effects of stigma
• Social isolation
• Limited rights and reduced access to services
• HIV/AIDS related stigma fuels new HIV infections
• Secondary stigma (stigma by association)
41. Stigma in service delivery
• Discourages access to ANC services
• Prevents access to counselling , HIV testing and MTCT
services
• Discourages disclosure of HIV test results to partner(s)
• Discourages acceptance of MTCT interventions
• Inhibits use of safer infant-feeding practices
• Confers secondary stigmatisation on the child
42. Addressing stigma
• Interventions addressing HIV-related
stigma can take place at all levels:
• National
• Community and social/cultural
• MTCT site/facility
• Individual
43. National Level Interventions to
Address Stigma
– Support
• Human rights legislation
• National efforts to scale up ARV treatment
• Funding for PPTCT services, and training
– Share
• MTCT success stories
44. Community Level Interventions
• In the community, promote
• HIV awareness and knowledge
• MTCT activities as integral to health care and
HIV/AIDS prevention and treatment
• Referrals to and from MTCT services
• Awareness of MTCT interventions
45. Community level interventions (contd.)
Support
• Partnership with schools, social and community
organizations
• PLWHA ( people living with HIV/AIDS) in
implementing initiatives
• Networking with needed linkages
• Ongoing training
46. Programme level interventions
• Integrate MTCT into antenatal services
• Encourage partner involvement
• Enlist partner and family support to
decrease HIV transmission
47. Addressing stigma
• Educate and train healthcare providers in
• HIV transmission
• Activities to address stigma
• Awareness of language that describes PLWHA
• MTCT-related policies
• Counselling and safer infant feeding practices
48. Addressing stigma
Enlist manager’s help to ensure policies and
procedures are in place and implemented for:
• Non-discrimination policies
• Confidentiality
• Universal precautions
• Post-exposure prophylaxis (PEP)
49. Summary
• Stigmatisation reflects an attitude
• Discrimination is an act or behaviour
• Stigma and discrimination are often linked to violations
of human rights
• Human rights declarations affirm all peoples’ rights to be
free from discrimination, including discrimination based
on HIV/AIDS status.
• HIV/AIDS-related stigmatisation and discrimination can
discourage access to key HIV services, including:
• Testing
• MTCT services
• Antenatal care
• ARV prophylaxis
50. Summary contd
• Stigma discourages
-Disclosure of HIV status
-Acceptance of safer infant-feeding practices
-Access to education, counselling, and treatment even when such
services are available and affordable
• The MTCT programs and staff can help reduce stigma and
discrimination in the healthcare setting, in the community, and at the
national level
• Encourage MTCT staff to serve as role models
• Involve PLWHA
• Promote partner participation and community support
51. HIV stigma and the media
• “The media wants to sensationalise issues…and
this becomes even more dangerous when media
personnel are not knowledgeable to start with”
[Ethiopia]
• “The media is a direct reflection of the
development and consciousness of a society”
[Ethiopia]
Source: ‘Living on the outside’ (HDN, 2005)
52. The language of stigma…
One day in June 2006
1. “Woman jailed for giving boyfriend HIV”
2. “Woman is jailed for infecting lover with HIV”
3. “Woman jailed for deliberately infecting lover with HIV”
[Headline: Pure Evil]
4. “Ex tells of HIV nightmare” *caption on photo: AIDS Avenger]
[1. Guardian; 2. Independent; 3. Daily Mail; 4. Sun]
Broadsheet Tabloid
53. The woman in the picture, Marie, is on her way to the market. Her husband was recently
diagnosed as HIV-positive and has been quite ill. People in the community suspect that he is
HIV-positive. Ask participants:
»»What do you think the community members sitting on the chairs are thinking?
54. Negative attitudes about different groups of people can lead to discrimination. For example,
Anna is in Class 4 and is the best in her class. Her father recently died of AIDS and her mother
and baby brother are HIV-positive.
Ask participants:
»»What is happening in this picture?
55. Who does stigma and discrimination affect?
• Anyone infected, affected, or potentially at
risk for HIV (illustrative list):
– Injecting drug users
– Commercial sex workers
– HIV orphans
– Family and friends of HIV+ people of high-risk
groups
– Caregivers
56. How do stigma and discrimination “work”?
• Stigma works by producing and reproducing social structures
of power, hierarchy, class and exclusion by transforming
difference into inequality. The stigma attached to HIV/AIDS is
layered upon pre-existing stigma.
• Stigma is not unique to HIV/AIDS. It has also been seen
associated with TB, syphilis and leprosy. It is seen in diseases
associated with transgression of social norms.
• Language is crucial to stigma. Powerful metaphors act to
reinforce and legitimize stigmatization. These include
HIV/AIDS as death, horror, shame, punishment, and
otherness.
• Stigma can be internal or external. Internal stigma (felt or
imagined) is the shame associated with HIV/AIDS and the fear
of being discriminated against. External stigma refers to the
actual experiences of discrimination.
57. Stigma and discrimination impacts on
HIV/AIDS programs
• They can make life unbearable for those who live
with the disease.
• Stigma may make people who may have been
exposed unwilling to be tested, to change their
behavior, to reject prevention methods, and can
perpetuate poor quality of care and discrimination.
• Example, a woman may be unwilling to bottle feed if
she believes that it will brand her as HIV infected.
58. Illustrative barriers
• PLWA denied basic rights, access to care, treatment
and services.
• IDU’s and sex workers are forced to register their
status and are discriminated against.
• Sex workers face imprisonment due to the
criminalization of their trade.
• Children in institutions cannot access services and are
increasingly vulnerable to trafficking after
‘graduation’
59. How to address stigma and discrimination
• Care and support also mean emotional and social needs for
those who are affected by HIV. This includes visitation
programs, support groups, and methods aimed at overcoming
fears of the affected and society.
• IEC can include counseling, conflict resolution, and
educational messages tailored to target audiences (for
example, knowledgeable health care workers).
• USAID/Ukraine’s program
– Giving voice to those affected by HIV/AIDS
– Promoting a supportive environment through communication
strategies
– Protecting the rights of those affected by HIV/AIDS
60. HIV stigma and the media
• “The media wants to sensationalise issues…and
this becomes even more dangerous when media
personnel are not knowledgeable to start with”
[Ethiopia]
• “The media is a direct reflection of the
development and consciousness of a society”
[Ethiopia]
Source: ‘Living on the outside’ (HDN, 2005)
