HIV/AIDS-RELATED STIGMA AS AN OBSTACLE IN SERVICE DELIVERY
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HIV/AIDS-RELATED STIGMA
AS AN OBSTACLE
IN SERVICE DELIVERY:
OPEN SPACE TECHNOLOGY
WORKING GROUP CONFERENCE REPORT
OF PROBLEMS & SOLUTIONS
FEBRUARY 22-25, 2005
MONTECASINO
JOHANNESBURG
SOUTH AFRICA
Empowerment Concepts
David Patient & Neil Orr
www.empow.co.za
david@empow.co.za
neil@empow.co.za
PO Box 13043 Nelspruit 1200 South Africa
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© Empowerment Concepts
CONTENTS
Acknowledgements
Background of facilitators
Conference participants
Open Space Technology: The Method
Conference Program
Working Group Reports:
Group
Discussion 1: WHAT EXACTLY IS STIGMA? IS IT THE SAME OR DIFFERENT TO
DISCRIMINATION?
Report 1: ATTITUDES AND PERCEPTIONS OF RELIGIOUS LEADERS:
EFFECTS UPON SERVICE DELIVERY & STIGMA WITHIN COMMUNITIES
Report 2: MEN NOT ALLOWING PREGNANT WIVES TO BE TESTED
Report 3: HOW CHILDREN THAT ARE LIVING IN HOMES AFFECTED BY HIV,
DEAL WITH STIGMA
Report 4: HOW DOES THE MEDIA PROMOTE/REDUCE STIGMA IN IT’S MESSAGING
AND HOW DOES THIS IN TURN AFFECT SERVICE DELIVERY
Report 5: HOW BEST TO EMPOWER PLWHA’s AND THOSE AFFECTED TO
OVERCOME/DEAL WITH FEELINGS & PERCEPTIONS OF
HELPLESSNESS, IN TERMS OF BEING STIGMATIZED BY OTHERS
Report 6: PROGRAM DESIGN, PLANNING & FUNDING:
THE CRITERIA THAT WE NEED TO KNOW HIV STATUS BEFORE
DELIVERY TO BENEFICIARIES. HOW CAN WE IDENTIFY WITHOUT
STIGMATIZING?
Report 7: WHY ARE PEOPLE UNWILLING TO GO FOR VCT
(NON-WORKPLACE AREAS & COMMUNITIES)
Report 8: HOW DO WE GET PEOPLE TO COME BACK FOR THEIR (VCT) RESULTS?
Report 9: WHY PEOPLE DO NOT ACCESS FREE VCT AND HEALTH CARE
(WORKPLACE) WHEN IT IS AVAILABLE?
Report 10: PRACTICAL STRATEGIES TO OVERCOME STIGMA IN HEALTH CARE
SETTINGS
Report 11: HOW DO WE DEAL WITH FAMILY AND COMMUNITY REACTIONS TO
CHILDREN(HIV+, KNOWN) WHOSE PARENTS HAVE DIED?
Report 12: HOW DO WE TALK TO FAMILY MEMBERS WHO ARE LIKELY TO BE HIV+,
WITHOUT STIGMATISING THEM?
Report 13: REPAIRING (STIGMA-RELATED) DAMAGE CAUSED BY PREVIOUS
PROGRAM APPROACHES
Report 14: EMPOWERING COMMUNITIES TO IDENTIFY AND DEAL WITH STIGMA
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Report 15: EMPOWERMENT/SELF-STIGMA: WHAT WILL UNDO THE (SELF-STIGMA)
FEELINGS OF LOW WORTH, SELF-HATE, SELF-JUDGEMENT, AND
FEELING SEPARATE?
Report 16: WHAT CAN PEOPLE LIVING WITH HIV OR AIDS DO OR SAY (OR NOT DO
OR SAY) IN PULIC FORUMS, TO HELP REDUCE STIGMA?
Report 17: MEDIA : HOW CAN WE ‘USE’ THE PHENOMENA OF ‘STIGMA’ TO
MOTIVATE CHANGE (REGARDING DONORS)?
Report 18: HOW DO WE PROVIDE HOME BASED CARE (HBC) WITHOUT
STIGMATIZING OR DISCRIMINATING AGAINST THE PATIENTS?
Report 19: WHAT IS THE ROLE OF THE LANGUAGE USED BY TRADITIONAL
HEALERS AND HEALTH CARE WORKERS IN FURTHER PERPETUATING
STIGMA?
Report 20: WHAT ROLE CAN THE YOUTH PLAY IN ADDRESSING (REDUCING)
STIGMATIZATION WITHIN FAMILIES AND COMMUNITIES?
Report 21: STIGMA & GENDER : ARE WOMEN MORE STIGMATIZED THAN MEN?
IF SO, WHY?
Report 22: HOW DO WE MONITOR AND EVALUATE THE SUCCESS OF STIGMA-
REDUCTION INTERVENTIONS?
Report 23: SENIOR STAFF VERSUS JUNIOR STAFF: ARE THERE DIFFERENCES
REGARDING SELF-STIGMATIZING? IF SO, HOW DO WE REACH THEM?
TRAIN SEPARATELY
Report 24: HOW DOES SYMPATHY VERSUS ACKNOWLEDGING PERSONAL
RESPONSIBILITY FOR CHOICES MADE, IMPACT UPON STIGMA
(REGARDING NOT ACCESSING SERVICES)?
Report 25: HOW DOES THE ATTITUDES (E.G. EGO; SELF-RIGHTEOUSNESS) OF
CARE PROVIDERS STAFF IMPACT UPON STIGMA? WHICH IS THE
BIGGER PROBLEM?
Report 26: IF STIGMA IS CHARACTERIZED BY ISOLATION AND FEAR, THEN: WHAT
IS THE FIRST STEP TO CRACK THIS? WHO MUST DO THIS FIRST STEP?
Report 27: SERVICE PROVIDERS AND STIGMA: WHAT CAN SERVICE PROVIDERS
DO (OR SAY), OR NOT DO (OR SAY) IN PUBLIC FORUMS, TO HELP
REDUCE STIGMA?
APPENDIX 1: BRIEF CHECKLIST OF LEGISLATION IN DIFFERENT COUNTRIES
APPENDIX 2: MOVING ON (SONG LYRICS) – BELIEVE DHLIWAYO
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PARTICIPANTS
Angella Rubarema Min. Gender, Labour & arubarema@yahoo.com
Social Development 0925677922204
Program for Children & PO Box 3161
Youth Kampala, Uganda
Uganda
Modiehi (Priscilla) Kekana Coca Coal Limpopo -
South Africa 082-550-9982
PO Box 2867
Modimolle
Nylstroom 0150
Isobel van Zyl Coca Cola Fortune ivanzyl@ccfortune.co.za
Northern Region isobelvzyl@absamail.co.za
South Africa 082-787-4593
PO Box 4336
Polokwane / Pietersburg 0700
Criselda Kananda SA Post Office kanandcp@sapo.co.za
South Africa 082-448-8366
PO Box 7317
Halfwayhouse
Midrand
Linzi Smith NOSA AIDS Management linzi-etc@tc.co.za
Solutions 083-631-6667
South Africa 106 George Avenue
Sandringham
Diana Teffo Alex AIDS Orphans alexaidsorphans@telkomsa.net
Project 083-369-9703
South Africa PO Box 2318
Bramley 2018
Shaun Mellors South Africa s-mellors@mweb.co.za
Independent consultant
Felicita Hikuam Intl. Fed. Of Red Cross felicita.hikuam@ifrc.org
& Red Crescent Societies +41-0798166471
Geneva, Switzerland 17 Chemin des Crets
Petit Saconnex
Geneva, Switzerland
Dr Warnow Elon Isaac Gombe State PMTCT drwarnow@yahoo.com
Nigeria -
Gombe State PMTCT
C/o Gombe State UNICEF
Assisted Program
Linnet van Staden Tsogo Sun linnets@tsogosun.com
South Africa 011-510-7418
Private Bag X118
Bryanston 2021
Pelky Makahane Emnotweni Casino pelkym@tsogosun.com
Tsogo Sun 082-558-9139
South Africa PO Box 13666
Nelspruit 1200
Margriet Wilkens Emnotweni Casino margrietw@tsogo.com
Tsogo Sun 082-551-7199
South Africa PO Box 19059
Nelspruit 1200
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Filipe Charles CARE International filipe@carenpl.org.mz
Mozambique -
CARE Moz
Nampula
PO Box 368
Chipo Chiiya Intl. AIDS Alliance chipoc@alliancezambia.org.zm
Zambia (Southern) P.O. Box
Lusaka, Zambia
Jennifer Mulik Worldvision jmulik@worldvision.org
US 300 I St. NE
Washington DC 20024
Susan Rammekwa Jhb Child Welfare susan@jhbchildwelfare.org.za
Society 30093 Ext. ll
Meadowlands
1852
Estelle Jobson Soul Beat Africa ejobson@comminit.com
P.O. Box 31963
Braamfontein
2017
Heidi-Lee Stockenstrom CC Africa – Londolozi heidilee@manmade.co.za
P.O. Box 240
Mooinooi
0325
Roelene Beumer CC Africa roelene.beumer@ccafrica.com
P.O. Box 240
Mooinooi
0325
Diane Coleman C-Safe dico6363@yahoo.com
2511 Fairfax Avenue
Nashville TN37212
USA
Maria Tokwani Care Zimbabwe Mariato@carezimbabwe.org
P.O. Box 937
Highlands
Harare / or
8 Ross Avenue
Belgravia, Harare
Joy Chigogora Adra Zambia joy.chigogora@adrazambia.org.zm
chigogora_joy@hotmail.com
Adra-Zambia
P.O. Box 31309
Lusaka, Zambia
Rejoice Farai Mutibvu Catholic Relief Services fmutibvu@crsert.org.zw
– Zimbabwe 85 Central Avenue
Box CYllll
Causeway, Harare
Peter Ng’ona Catholic Relief Services pngona@crszam.org.zm
– Zambia 026-097-890752
Catholic Relief Services
Plot 106, Great East Road, Lusaka
PO Box 38086, Lusaka
Zambia
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Patience Hamayanda C-Safe Zambia patiencevilinga@yahoo.com
026 096433291
Catholic Relief Services
Plot 106
Great East Road
Rhodes Park
Lusaka
Khesiwe Ncube World Vision – khesiwencube@wvi.org
Zimbabwe 193 Cowdray Park
P.O. Luveve
Bulawayo, Zimbabwe
Beauty Nyirenda World Vision – Zambia beauty_nyirenda@wvi.org
Box 31083
Lusaka
Zambia
Gerald Shitima (PLHA) C-Safe geraldshitima@yahoo.com
CRS
P.O. Box 38086
Lusaka
Zambia
Believe Dhliwayo Vital Hope Support vitalhopes@yahoo.co.uk
Group – C-Safe mabhindu@yahoo.com
37 Twentydales Road
Hartfeld Road
Harare, Zimbabwe
Patricia Ulaya ADRA – C-Safe Zambia Patricia.Ulaya@adrazambia.org.zm
Patricia_Ulaya@yahoo.co.nz
095-752-468
c/o Mr. W.D. Ulaya
P.O. Box 32379
Lusaka, Zambia
Susan Chabala CARE Zambia chabalas2001@yahoo.com
095-818596
CARE International
P.O. Box 60256
Livingstone, Zambia
Kate Greenaway C-Safe kate_greenaway@c-safe.org
Southern Africa 082-466-7651
Box 5251, Weltevreden Park
Johannesburg 1715
South Africa
Sedibeng Ngubane Tsogo Sun Gaming sedibengn@tsogosun.com
Wellness Program 082-582-7997
South Africa
Judy Miller Empowerment judy@empow.co.za
Concepts Facilitator
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Acknowledgements
This conference would not be possible without the considerable support of Tsogo Sun Gaming,
who has provided the venue at a substantially reduced rate. Our thanks to them for making this
possible.
Background of Facilitators
David Patient is one of the longest-surviving people living with HIV in the world today. His
journey with HIV and AIDS began in the early days of the pandemic, in March 1983, when he
was diagnosed as having full-blown AIDS. Blood samples drawn at that time were later (1985)
confirmed to be HIV-positive.
His experience with stigma is extensive, both personally and in the work he does in many
countries. He lost his job due to his HIV status, had bomb threats, bricks thrown through his
windows, graffiti sprayed across his car, animals poisoned, and been ostracized by ‘friends’
when his status was revealed in a newspaper article soon after his diagnosis. He has also
experienced the difficulties in obtaining insurance, home loans, visas, and the range of
beaurocratic discrimination that accompanies living with HIV.
His basic philosophy regarding stigma is:
“People treat you the way you teach them to treat you”.
I.e., stigma is something that needs to be tackled head-on, and not allowed to
Remain unchallenged
Email: david@empow.co.za
Neil Orr is a research psychologist, who has been working in the area of HIV and AIDS since
1985. He is the author of Positive Health, currently the most widely used book on how to live
with HIV, nutritionally, medically, and psychologically. Email: neil@empow.co.za
David and Neil are the principal members of Empowerment Concepts, a company devoted
largely to development and capacitation work in the developing world, largely focused upon
issues of poverty alleviation and HIV/AIDS. Their experience includes most countries of East
Africa, and all countries in Southern Africa.
Both David and Neil believe – based upon their experience throughout Africa and Asia – that
stigma is one of the principal obstacles to service delivery (medical, and non-medical) to those
infected and affected by HIV and AIDS.
The reader can read several articles on stigma – and other topics – on their web-site:
www.empow.co.za.
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OPEN SPACE TECHNOLOGY: THE METHOD
The principles of OST are simple:
• Get a group of people together who have a common concern, and who have
experience in the area of concern. There are no pre-conceived ‘answers’ – only
a passion and commitment to find answers. Ask them what concerns them, and
then ask them to generate solutions. Record this.
• The function of the facilitators is to promote discussions and thinking.
• Participants only contribute to issues that concern them. Participants create the
contents and outcomes of the conference. All ideas and solutions are shared
with all participants. They leave with a report of the entire process.
The method is unusual for those who have attended conventional conferences, where
delegates typically sit and listen to ‘experts’. Often, issues and questions of great
concern are simply never discussed. In OST, the delegate – the people with the
experience of the problem – are the ‘experts’, as they have the real issues and realities
in mind.
Some basic OST ‘rules’:
• If you raise an issue, you take responsibility for convening a work group on that
issue. Why? Because the best person to convene a work group is someone
who is passionate about the issue.
• If you are not interested in a specific issue, don’t get involved. You’ll get the
report at the end anyway. Only get involved with what interests you.
• Several work groups will occur at the same time. You can get up and go to
another group at any point in time. No reasons need to be given. This is called
the ‘Bumble Bee’ principle. When you have given – or hear – what you want to
give or hear, move along. This allows for ideas to be ‘cross-pollinated’
(transferred) from group to group.
• You can sit out any session. You can chat around the coffee station. You can sit
alone and just think. However, at the beginning of any day, and the
commencement of the sessions after lunch, be present.
• Each work group is chaired by the person who raised the issue. Another person
will record what is said. The record is handed in, and checked by an
administration person so that it can be typed up. A draft copy is posted on the
Village Notice Board for corrections the next day. Corrections (if any) are made.
Then it is placed into the report.
• A work group session is about 1 hour. You are given 20 minutes to nail down
the ‘real problem’, and 40 minutes to discuss solutions.
• If you have an issue of concern to you, but no-one else is interested, then write
a report by yourself.
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CONFERENCE PROGRAM
Day 1:
Start: 09:00-10:15 Registration
Introductions
Tea break: 10:15-10:45
Session 1: 10:45-12:30 Different strokes for different folks (memes)
Lunch: 12:30-13:30
Session 2: 13:30-16:30 Brain-storming exercises:
Problem identification/specification
Generating solutions (methods)
Tea break: 14:30-14:45
Session 3: 14:45-16:30 Brain-storming exercises continued:
Empowerment versus Rescuing
Raise & record the issues
The issues raised in the Session 3 are collated and arranged to a schedule, which is posted on
the Village Notice Board by 8:30am on Day 2. Delegates write down which group sessions they
want to attend.
From this point forward, the process becomes very fluid, and adapts according to the
participants’ needs and processes. Tea breaks will occur more-or-less at 10:45 am and 14:30
pm. The following program is merely a guideline:
Day 2:
Start: 09:00am Welcome
09:15-10:00 Group discussion: Stigma – what is it?
10:00-10:15 Over-view of OST methods in the groups
Participants sign up for work groups
Tea break: 10:15-10:45
Session 4: 10:45-11:45 Work groups
11:45-12:30 Results reported to conference group
Lunch: 12:30-13:30
Session 5: 13:30-13:45 Discuss dynamics of work groups
13:45-14:45 Work groups
Tea break: 14:45-15:00
15:00-15:45 Results reported to conference group
Wrap Day 2 15:45-16:30 Q&A
Day 3:
Start: 09:00-09:15 Welcome
09:15-09:30 Participants sign up for work groups
09:30-10:45 Presentations for day 2
Tea break: 10:15-10:45
Session 6: 10:45-11:45 Work groups
11:45-12:30 Results reported to conference group
Lunch: 12:30-13:30
Session 5: 13:30-14:30 Work groups
14:30-15:15 Results reported to conference group
Tea break: 15:15-15:30
Wrap Day 3 15:30-16:30 Q&A
Day 4:
Start: 09:00 Open discussion of what was learned
Report handed to each participant
Closing: 12:00
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Group Discussion 1:
WHAT EXACTLY IS STIGMA? IS IT THE SAME OR DIFFERENT TO
DISCRIMINATION?
It is not possible to discuss ‘stigma’ until we know what we mean by the word. Is it the same as
‘discrimination’?
The word ‘stigma’ means ‘mark’, such as when farmers brand their animals with some sign or
symbol. It is understood to indicate a physical sign that has been made.
How are people physically ‘marked’ in HIV? Two ways:
1. The blood – HIV test result
2. AIDS (illness) symptoms that are visible.
People avoid being stigmatized by refusing to get tested. You cannot get ‘marked’ until you are
tested. However, this is only a delay measure, as you will be ‘marked’ when you start getting
sick (AIDS).
So is ‘stigma’ the same as ‘discrimination’? Delegates felt that they were not the same. It was
stated that stigma has got to do with how people feel and think about someone, while
discrimination has got to do with what people do (actions) against the person. In essence,
stigma is an internal process – usually of fear – which gets justified somehow (e.g., the person
is a burden, a sinner), which then leads to discrimination (actions that separate the other
person, or harms them).
It is therefore not possible to make laws or policies against stigma, as these are internal feelings
and thoughts. You can, however, counsel, educate, and try to change people’s hearts and
minds.
You can make laws and policies against the discriminatory behaviour that comes from stigma.
One delegate shared the experience where she – a service provider with knowledge and
experience – found herself afraid and wanting to separate her brother who was ill with AIDS.
She intellectually knew is was safe to take care of him, but the feelings of fear remained. It took
will power to overcome the fear, and take care of him.
Where does this irrational fear come from? Why is there an irrational impulse to ‘mark’
(stigmatize) someone, and then act to separate them from yourself?
Also, it was noted that in the research, the main reason people gave for not accessing services
was the fear of being rejected, and not the occurrence or experience of seeing others rejected
when they tried to access those services. I.e., it is not what is happening that people are afraid
of, but rather what might happen (rejection).
The following possibilities were suggested:
1. That we all experience the fear of rejection as connected to our very survival as infants.
Perhaps this fear of potential rejection is thus based in deep memories that our survival
is dependant upon remaining in the group. It is therefore an unconscious fear of
rejection.
2. ‘Utilitarianism’: Survival of the greatest number of people, at the expense of individuals.
This has it’s roots in anthropology, where our ancestors used to leave the sick and aged
behind if they could no longer travel. As the group’s survival depends upon the ability to
follow herds of animals in their migration, those that could not travel could hold the
group back, causing them to starve to death (the group). Therefore, they were left
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behind. It is possible that – particularly in a resource-poor situation – people living with
HIV (or other qualities that are stigmatized) are viewed as utilizing resources that are
scarce, for no benefit of the group, as they will (it is believed) die. Therefore, to improve
the chances of survival of the group (family/community) stigma-based behaviour may
be viewed as a pro-survival mechanism. The presentation of PLWHA as ‘victims’ and
‘sufferers’ makes this perception more real, and entrenches stigma.
It is also no surprise – given the above – that the AIDS = DEATH message we have used for so
long to persuade people to resist from high risk behaviour, has had a reverse effect in terms of
stigma. We wanted to scare people, and now they are scared!
However, it was also pointed out that people are not just the product of their past and ancestry:
We also have the capacity to reason, learn, and act with compassion, despite our fears.
Therefore, although the task may be long-term, we need to address the underlying fears
associated with stigma, even the irrational ones.
We can also begin the process of defining a community identity, with clearly defined values that
oppose stigmatization.
In conclusion, there are two dimensions to ‘stigma’:
1. The feelings (internal) against the ‘marked’ person;
2. The behaviour that is motivated by the stigma feelings (discriminatory behaviour).
We need to address both aspects.
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Report 1
ATTITUDES AND PERCEPTIONS OF RELIGIOUS LEADERS:
EFFECTS UPON SERVICE DELIVERY
& STIGMA WITHIN COMMUNITIES
Convener: Shaun Mellors
Contributors: Cherylynn O’Brien; Neil Orr; David Patient; Gerald Shitima (PLHA)
The problem:
Religious leaders can ‘stigmatise’ people by the way in which they talk, and refer to people living
with and affected by HIV. This can take the form of moral judgments, ‘fire & brimstone’ sermons
etc.
Places of worship are seen as places of safety, comfort, spiritual rejuvenation, and education.
Leaders are also seen as moral and spiritual leaders. Therefore they have a responsibility to be
educated and sensitive to the needs of the community.
Holy books (Bible, Qu’uran etc) texts can be misrepresented or interpreted.
Conflict with official position of religious institution and what happens in reality.
Religion deals with morals, beliefs and values. Stigma deals with morals, beliefs and values.
Constant clash.
Ideas / actions / suggestions / experiences focused upon solutions:
Identify a key ally (respected leader) within the religious institution to speak publicly, or begin to
influence/dialogue with such leaders. E.g. Archbishop Tutu, Dalai Lama.
Have high level discussions and/or education within religious institution to educate and sensitize
first, then develop official policy, then filter down.
Conduct/encourage inter-denominational educational interactions to discuss and define an
effective and appropriate ‘religious response’.
Integrate stigma-reduction strategies in education for religious institutions e.g. counselors,
home-based carers.
Use source material (texts) more constructively, effectively – e.g., “What would Jesus do?”
Religious institutions to re-enforce meaningful education strategies/approaches (use sex as the
solution, not the problem, communication in relationships, intimacy etc.)
Use positive clergy more effectively to address stigma and as role models.
Create and encourage an environment for disclosure (and acceptance) within church, temple,
mosque.
Encourage religious institutions to become advocates on key advocacy issues.
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Report 2
MEN NOT ALLOWING PREGNANT WIVES TO BE TESTED
Convener: Dr Warnow Elon Isaac
Contributors: Maria Tokwani; Priscilla Kekana
The problem:
Background to the problem in Nigeria: 3450 women came to ante-natal clinic where they
received education (health). Only 1240 opted for VCT, and 2210 women (the remainder of
1240) could not be tested until they had told their husbands. Husbands are mainly 80%
Muslims. Women were denied PPTCT (Prevention of Parent To Child Transmission) privileges
because the husband said if they tested positive, they would divorce them. Of the 1240 who
opted for VCT, 90 of these tested positive and 75% disclosed to their spouses. Fifteen (15)
men came to health centers (of the 90 women who tested positive) for partner testing.
Upon investigation, the reasons given for husbands denying their pregnant wives access to
PPTCT program privileges, by refusing that they get tested, were:
- If positive, divorce.
- Just do not want to know their status
- What God has done there is nothing that we can do about it
- Once tested positive, this will bring shame to the family
- No drugs for treatment for the positive mothers (i.e. ARV’s), so why bother testing?
- No infant formula for formulars
- No confidentiality in the health workers
- The women say they are discriminated against by health workers.
Ideas / actions / suggestions / experiences focused upon solutions:
Sensitisation of Traditional leader/opinion leaders (e.g. politicians), and all CBO’s.
Mass media (we did advocacy visits and workshops).
Attending community dialogues, anti-natal and health care worker dialogues.
All these being done, need a follow-up to make sure the trained people cascade the information
to the grass root levels.
Incentives for free testing for partners whose husbands are positive, and treatment options for
husbands.
For pregnant mothers, give incentives like PPTCT plus i.e. treatment (ARV’s) for the mothers),
formula for infants (i.e. given infant feeding options & plus).
Get husbands involvement in anti-natal clinics at least once per trimester. This should be
enacted as law by government.
Try to de-stigma through mass media campaigns.
Community sensitization to be done in such a way that memes of different groups and
stakeholders are taken into consideration (in this case penetrate through the blue meme.
Health workers need to be trained on inter-personal communication and confidentiality.
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Report 3
HOW CHILDREN THAT ARE LIVING IN HOMES AFFECTED BY
HIV, DEAL WITH STIGMA
Convener: Chipo Chiiya
Contributors: Diana Teffo; Angella Rubarema; Criselda Kananda; Susan Rammekwa
The problem:
Children are not aware of stigma, so labeling by adult is a problem (stigmatized), i.e. calling
them names. They also experience isolation, especially at school.
They are seen as a burden.
Children grow up without family values, norms, self respect. They also lose their sense of
identity.
Harmful beliefs attached to such children in some cultures. Ethiopian case – seen as children
with evil spirits
The attitude of the community can be bullying.
Because of lack of knowledge, there is ignorance by families and communities about the
transmission of HIV.
No parental guidance leads to illiteracy.
Fear of casual contact with PLHAs. Thinking they might catch HIV or might be infected.
Ideas / actions / suggestions / experiences focused upon solutions:
Strengthen the extended family system, by empowering families, such as reminding them of
their values.
Provide the children with essentials, such as food and school fees.
Sensitise the community on how to help these children – take it as a community responsibility –
community leaders. For blue meme groups, focus upon religion faith, and with orange meme
groups, focus upon scientific knowledge. Green meme, human rights.
Help the community to identify the problem using the ‘problem tree approach’ (see notes on the
following page)
Programs to be inclusive to reduce isolation and labeling of AIDS orphans.
Each program should have an HIV/AIDS component – streamlining HIV – mines, manufacturers
– government departments.
Inclusion of a HIV/AIDS component into the curriculum of schools (teachers/pupils)
Massive campaign – AIDS fact sheets. E.g., transmission modes; Safety of casual contact.
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The Problem Tree Approach
EFFECTS
FORMS
CAUSES
This could also be a way of looking at the problem of stigma. The roots represent the causes,
then stem represents the forms, and the leaves represent the effects.
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© Empowerment Concepts
Report 4
HOW DOES THE MEDIA PROMOTE/REDUCE STIGMA IN IT’S
MESSAGING AND HOW DOES THIS IN TURN AFFECT SERVICE
DELIVERY
Convener: Estelle Jobson
Contributors: Criselda Kananda; Gerald Shitima (PLHA); Cherylynn O’Brien
The problem:
In some instances, media serves to inflate stigma – in pictures of suffering e.g. orphans, stick-
thin people wasting away – that serves to shock. In some ways, the words media use serve to
promote stigma (‘suffering/dying” of AIDS, disease/infection) and constant focus are on negative
stories). In other ways, media leaves gaping holes i.e. does not cover important matters and
fails completely to share with the public certain aspects of HIV/AIDS work. We need to identify
what these gaps/holes are and how the media should be improved about them and also how
they should be portrayed. That is the media-to-the-public issue.
But we also need to talk about how media works for and within the circle of HIV/AIDS workers.
How do we use media for our HIV work – from what media sources do we seek resources?
How do we share, publicise, market the HIV work we do? Via which networks, listservs, and
what is our preferred kind of media (TV/radio/print/newsletter)?
Media sometimes focuses on a given HIV story to fit their agenda. Journalist may wish to push a
story into a campaign, e.g. 3 by 5 and if you aren’t on ARV’s, they won’t interview you. The
donors/pharmaceuticals may be behind the journalism, so your story may be censored
according to their issues.
HIV has been commercialized e.g. ads, new publications, selling ad space, a huge ‘industry’.
But how much of that goes back to the affected people?
Sometimes media expose people without the person’s consent, or sensationalises the story
accordingly. Media has a role in disclosure.
Media doesn’t always translate correctly when people speak in their mother language/tongue
e.g. African language.
Ideas / actions / suggestions / experiences focused upon solutions:
Media workers should be trained in HIV, i.e. so they become more informed and report more
competently. This could take place within media houses.
We need more ‘live’ interviews without donors interceding – e.g. community radio. Uncensored
reporting, without the agenda of the donor or pharmaceuticals.
We need to see articles before they are published, and screen them to check if the media is
representing us correctly.
We need more live broadcasts on TV, e.g. practical nutrition guidelines, ‘open pages’ in
newspapers to provide vox populi (voice of the people) on HIV questions and answers.
We need greater involvement of people with HIV etc. working within media, particularly skilled
media workers (not just public) and training media workers.
15Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
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We should be integrating HIV into general wellness in media, so that participants are not
isolating 1 topic, but general positive living/health etc.
HIV workers should share their info more in media, which may means paying community radio
stations to air their recorded programs.
Media can help people prepare for disclosure so that public disclosure is handled well – i.e. no
more Gugu Dlamini situations! And people can handle the repercussions of their public
disclosure.
The role of nutrition educations needs to be emphasized, less condoms and more on general
nutrition.
Mother tongue languages need to be worked with to create African language equivalents of
western words, e.g. condom –i-condom? Or another African word which means ‘protect’. We
also need African language words for ‘stigma’ too.
16Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 5
HOW BEST TO EMPOWER PLWHA’s AND THOSE AFFECTED
TO OVERCOME/DEAL WITH FEELINGS & PERCEPTIONS
OF HELPLESSNESS, IN TERMS OF
BEING STIGMATIZED BY OTHERS
Convener: Diane Coleman; Heidi-Lee Stockenstrom
Contributors: Judy Miller; Roelene Beumer; Felicita Hikuam; Filipe Charles
The problem:
How do you deal with the effects of stigmatization of the individual within a community?
Ideas / actions / suggestions / experiences focused upon solutions:
Main issues are to facilitating the following:
• Empowerment
• Sense of belonging
• Contributing & expressing – feelings/needs
• An environment where you’re encouraged to ask for help.
• Assert dignity
Desired outcomes:
• People’s reaction to being HIV and or being part of a community with people living with HIV
and the response is ‘so what’?
• An environment where peole are comfortable to ask for help, express their fears and have
the faith and courage to accept the response.
External challenges:
• Building communities where difference is accepted
• Economic development – taking responsibility for oneself.
• Empower by share information within community through – churches/schools/tribal leaders
Internal challenges:
• Encourage the expression of feelings – fear/pain/rage and anger/confusion
• Health motivation – self value in taking ownership.
• Realization that we all belong to communities.
• Gain sense of identity of self.
17Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 6
PROGRAM DESIGN, PLANNING & FUNDING:
THE CRITERIA THAT WE NEED TO KNOW HIV STATUS
BEFORE DELIVERY TO BENEFICIARIES. HOW CAN WE
IDENTIFY WITHOUT STIGMATIZING?
Convener: Khesiwe Ncube
Contributors: Jennifer Mulik; Isobel van Zyl; Beauty Nyirenda; Joy Chigogora; Gerald
Shitima (PLHA); Farai Mutibvu
The problem:
How can we target people when they are afraid to discuss their status? How can we report that
PLWHA benefited from our program?
Health centres (HC) will not give out the info because of patient confidentiality. People often do
not access programs because of stigma.
Even PLWHAs who are benefiting from the program will not discuss the benefits with others
because of fear of stigma. How can we start up programs without the role models on
acceptance discussing the benefits? Essentially, there is no entry point for rapid start up of
programs.
Often there is not enough money or time to do sensitization before beginning a program. There
are networks at the national level but not at the community level. There are policies on the local
level on paper only.
In summary the barriers are lack of adequate time, stigma and confidentiality.
Ideas / actions / suggestions / experiences focused upon solutions:
• Separate planning from delivery in messaging, often excluding the word “AIDS’.
• Need to work via a VCT clinic in order to get a defined target – of PLWHA’s
• Gather people to talk about any health topic e.g. diarrhea, nutrition, TB in order to get the
attention of people first before you bring up the subject of testing.
• Partner with another organization that works in the community.
• In Zimbabwe the health centre staff are referring patients to food programs which have an
HIV/AIDS component.
• In Zimbabwe as well there are existing networks serving the chronically ill.
• Village health workers in Zimbabwe are more effective because they are picked by the
community itself and paid by the government.
• When writing proposals take into account the time required to identify beneficiaries and
sensitize the community.
• Foster shared confidentiality about HIV status among all service providers. Therefore,
NGO’s may gain access to PLWHA to deliver services.
18Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 7
WHY ARE PEOPLE UNWILLING TO GO FOR VCT
(NON-WORKPLACE AREAS & COMMUNITIES)
Convener: Believe Dhliwayo
Contributors: Peter Ngona; Patricia Ulaya
The problem:
The real problems are:
• Limited knowledge of the value of VCT. People don’t know the value of VCT and its
benefits.
• Misconceptions about HIV/AIDS in relation to the mode of transmission.
• Separation of VCT centres from the main health facilities has instilled fear of being labeled
as HIV positive in community members.
• Unavailability, inadequate complementary services like ARV’s programs, standardized HBC
approaches, inhibits people from going for VCT.
• Fear of being victimized by community members, isolation and rejection.
Ideas / actions / suggestions / experiences focused upon solutions:
• Integrating VCT functions into existing health facilities and expand/improve the capacity of
such facilities. (staff, equipment, infrastructure).
• Intensified treatment literacy, continued education on issues of HIV and AID, to encourage
people to go for VCT.
• Creation of effective referral systems whose services are sustainable, that being done or
ensured through, committed caring, capable, connected and community leadership
qualities (from) service providers.
• One of the group members stated their personal experience: “I was able to cope because
there was a referral system that was in place at the VCT”.
19Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 8
HOW DO WE GET PEOPLE TO COME BACK
FOR THEIR (VCT) RESULTS?
Convener: Believe Dhliwayo
Contributors: Peter Ngona; Patricia Ulaya; Beauty Nyirenda
The problem:
• Lack of confidentiality
• Ineffective pre-test counseling
• Unsustainable interventions e.g. (ARV’s)
• Fear and stigma, especially if they think their result is HIV positive.
Ideas / actions / suggestions / experiences focused upon solutions:
• Ensuring a conducive counseling environment that ensures confidentiality.
• Effective pre-test counseling
• Effective education and improvement.
• One of the group members said “I was confident enough to get my results because the
service provider (counselor) was committed and the process I went through was effective
initially.”
• Ensuring that there are effective, sustainable interventions.
20Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 9
WHY PEOPLE DO NOT ACCESS FREE VCT AND HEALTH
CARE (WORKPLACE) WHEN IT IS AVAILABLE
Convener: Linzi Smith
Contributors: Margriet Wilkens; Susan Chabala; Pelky Makahane; Kate Greenaway;
Patience Hamayanda
The problem:
1. Some employees are not well. Have access to medical aid or facilities, EAP and VCT
but do not access help (whatever that help might be).
2. Interpretation or misinterpretation of the HIV policy and the lack of communication of the
policy
3. Self stigma issues
4. Lack of confidential space
5. People in leadership roles feel unsure, disempowered or untrained to approach
employees or people who are experiencing problems or ill health.
6. Management have no training with regards to dealing with HIV related issues
7. Fear of lack of confidentiality
8. Lack of knowledge of various levels of disclosure – partial disclosure, full disclosure,
legislation – right to privacy.
Ideas / actions / suggestions / experiences focused upon solutions:
To problem 1:
• Empower management to manage employee issues such as absenteeism, reduction in
productivity, dismissal for incapacity, etc.
• Standard procedures to be followed by all managers within an organization.
• Training is essential for both employees and management to be able to deal effectively with
these issues.
To problem 2:
• Development of the policy – ILO (International Labour Organisation), code of good practice,
TAG (Technical Assistance Guidelines – Dept. Labour, RSA).
• Procedures to be attached to policy
• Policy to be effectively communicated to the employees and checked for understanding to
ensure that issues of discrimination and confidentiality are understood. Policy is a
statement of intent with regards to what the organization is willing to do for the
employees in terms of the education program, VCT and treatment and care.
• Ensure that misconceptions are corrected if identified.
• A project plan attached to ensure that the intents stated in the policy are carried out.
To problem 3:
• Effective counseling – accessing this counseling is still a problem – but as the program
reduces fear – accessing of counseling should increase.
• Ensure that counselors are well trained.
To problem 4:
• Huge problem with very little in the way of solutions.
• Need budget, space, advocacy to improve these issues.
• Leadership need to admit that this is a problem.
21Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
To problem 5 and 6:
• People in leadership roles feel unsure, disempowered or untrained to approach employees
or people who are experiencing problems or ill health.
• Management have no training with regards to dealing with HIV related issues.
• This is about training. Ensure that training service providers are accredited or offer quality
services and don’t just take the cheapest quote. Screen various service providers for
quality.
• Introduction of HIV related program KPI’s (Key Performance Indicators) as part of
performance appraisals.
• Leadership to share info with regards to problem solving.
To problem 7 – fear of lack of confidentiality:
• Well communicated policy will go a long way to reducing this fear. Leadership to ensure that
they comply with confidentiality.
To problem no 8:
• Lack of knowledge of various levels of disclosure – partial disclosure, full disclosure,
legislation – right to privacy.
• Effective Training and counseling
22Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 10
PRACTICAL STRATEGIES TO OVERCOME STIGMA
IN HEALTH CARE SETTINGS
Convener: Shaun Mellors; Linzi Smith
Contributors: Joy Chigogora; Kate Greenaway; Isobel van Zyl
The problem:
1. Confidentiality/shared confidentiality within family members or community
2. Attitudes of Health care workers – Payment (over worked and underpaid).
3. Skills of health care workers
4. Context or reality of HCW’s situation (no equipment, short staffed, at risk, of becoming
infected)
5. Misperception about being justified re bad attitude
HCW = Health Care Worker
Ideas / actions / suggestions / experiences focused upon solutions:
To problem 1:
Doctors and nurses have to maintain patient confidentiality – family members are expected to
look after the patient without knowing the diagnosis. Shared treatment and care strategies with
caregivers. Encourage more effective care and support strategies within the family or
community with regards to disclosure.
To problem 2:
A difference in ideas was noted: One member of the group felt that nurses were underpaid,
misunderstood, and this needed to be investigated – why do nurses have bad attitudes.
The other member felt that circumstances did not justify poor attitudes
Attitudes:
• Create discussion forums/opportunities for user / provider interface
• Sensitization – Overcome the doctor’s god-like syndrome, so that the interaction is a
two-way dialogue process between the health care provider and the health care user.
• Accountability – checks and balances
• Consequences for bad service delivery both attitudinal and delivery of treatment –
disciplinary action
• Code of conduct for the provider to be guided by (e.g Batho Pele), as well as the user to
be guided by the code of conduct (the service that should be provided). Health rights.
• Create discussion forums and opportunities for user/provider interface.
• Selection criteria for entry into the health care professions – screening process.
To problem no 3:
Skill and capacity of health care workers.
• Integrate comprehensive training at nursing colleges and medical schools
• Include attitudinal training in the basic training of doctors and nurses.
• Ongoing training through CPD (continual professional development)
• Leadership advocacy for ongoing training
• Inaccessibility to training for various reasons – creative ways to deliver training and skill
development. E.g. Distance learning, running courses one day per week over an extended
period of time,
23Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
To problem no. 4:
Context or reality of Health Care Worker’s situation (no equipment, short staffed, at risk, of
becoming infected)
• No medicines, no gloves, etc – high patient load, etc. – Poor ordering systems in place,
poor delivery systems – improve internal systems, develop advocacy campaigns to improve
systems and health care infrastructure.
• Perception that health care workers are under paid – work longer hours than anyone else,
work harder than anyone else prevails amongst health care workers and some members of
the public. Host workshops to assist with unpacking these perceptions, to understand where
these perceptions come from and what to do about them.
To problem no. 5:
Health care workers have misperceptions about being justified re their bad attitudes.
As above – workshops to assist to unpack these issues
24Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 11
HOW DO WE DEAL WITH FAMILY AND COMMUNITY
REACTIONS TO CHILDREN(HIV+, KNOWN) WHOSE PARENTS
HAVE DIED?
Convener: Chipo Chiiya
Contributors: Angella Rubarema; Priscilla Kekana; Diana Teffo; Susan Rammekwa;
Criselda Kananda
The problem:
Communities and families isolate these children – reject them.
Communities and families do not want to share resources with these children.
Children are hidden or removed and taken to the village whilst other relatives occupies.
Children are deprived/denied of their rights e.g.
- right to education
- right to medical care
- right to choose
- inheritance
Labeling of these children by families and communities, language and stigma – language used
to describe them.
Children used to gain extra income.
The community blaming the children for ‘killing their parents’.
Communities link AIDS to prostitution, and say the children were prostitutes.
Ideas / actions / suggestions / experiences focused upon solutions:
Sensitizing the communities about children issues (identifying which memes, e.g., green and
blues etc).
Meeting with community leaders, for them to influence their communities to change attitude on
children. E.g. teachers, counselors and church leaders.
Understand, respect and explore children’s experiences by taking to them in order for them to
voice out their feelings.
Formation of children support groups.
Breaking the ‘sex ice’ – since countries linked AIDS to sex, hence families feel ashamed to talk
about issues surrounding sex to children.
Sensitize the communities and children about children’s rights through schools as well.
Involve youths in the dissemination of information.
25Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 12
HOW DO WE TALK TO FAMILY MEMBERS WHO ARE LIKELY
TO BE HIV+, WITHOUT STIGMATISING THEM?
Convener: Maria Tokwani
Contributors: Believe Dhliwayo; Diane Coleman; Patience Hamayanda;
Beauty Nyirenda
The problem:
HIV-positive relatives fear the response they might get from family members when they disclose
their status.
Self-stigma – self unworthy-ness: A family member who is HIV-positive might have self-
stigmatization, hence feelings of low self worth. This hinders them in talking about their status.
Rescuer – persecution.
Grapevine – within the family members: Gossip within family members without addressing the
problem squarely might hinder disclosure or lead to stigma.
Inability to deny your status quo.
People not ready to talk about HIV or AIDS.
Extended family: Disclosing to a sister or brother who is married means the news will be known
by the wife/husband’s families too.
Ideas / actions / suggestions / experiences focused upon solutions:
Bring somebody from outside to talk to them.
De-role – get into their shoes – empathize with them.
Find out how they feel about their illness. Trying to find answers from them. For example, “You
have been taking this medicine for sometime, why can’t we try somewhere like the hospital”.
Family dialogue on matters and will be easy to talk about HIV/AIDS:
Create an enabling environment where these issues could be discussed in a more harmonious
(non-stigmatizing) atmosphere. Examples: at braais, family gatherings, where issues could be
discussed, including HIV and AIDS.
26Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 13
REPAIRING (STIGMA-RELATED) DAMAGE CAUSED BY
PREVIOUS PROGRAM APPROACHES
Example: Previous efforts caused people to link our program/product to HIV/AIDS. Now I can’t
get anyone to volunteer to help, even although we changed our approach.
Convener: Isobel van Zyl
Contributers: Roelene Beumer; Beauty Nyirenda
The problem:
No trust between employer and employee about the confidentiality of test being done previously
although confidentiality was kept.
Employee did not feel comfortable in going for test but felt forced to go.
No programs in place for people who tested positive.
Too little knowledge was given to them about HIV before the test.
Because trust was broken people don’t want to participate in any health program.
Ideas / actions / suggestions / experiences focused upon solutions:
Desires outcome is to get the trust back to get people to be willing to participate in wellness
program.
How?
• Write a wellness program and present it to management (HIV only mentioned as a part of
the program).
• Call on staff representatives, present them with your program to get their ‘buy’ in (make it
fly).
• Staff representative to go on training i.e. Positive Living training.
• Incentive and newsletter – incentive (not money) for depot. Who does the best positive
living program?
• Start with practical visual (things) training first, like home remedies and gardens.
• Seeing is believing.
• Get trust back and an environment of caring.
• Create a sense of belonging:
o Live the talk
o Allow people to attend training sessions
o Refer employees with illness or problems for help. Don’t discipline first for poor
work performance.
27Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 14
EMPOWERING COMMUNITIES
TO IDENTIFY AND DEAL WITH STIGMA
Convener: Felicitia Hikuam
Contributers: Susan Chabala; Filipe Charles; Heidi-Lee Stockenstrom;
Warnow Elm Isaac; Pelky Makahane
The problem:
How do you empower communities to identify stigma as a problem and find solutions
themselves?
Over-arching theme: Integrate HIV into overall wellness. Do not talk HIV only and do not isolate
the issue. Communities will be more perceptive if the issue is positive living or overall wellness.
Issue 1: How do we facilitate the process of communities identifying stigma and discrimination
and finding solutions:
Issue 2: Identifying key people to access communities and facilitate empowerment.
Issue 3: Difficulty discussing with communities certain subjects that are taboo or having
discussions with the general community (group).
Issue 4: Addressing how rural health care workers and churches contribute to stigma. Also
addressing how rural health care workers are ‘used to’ stigmatize.
Ideas / actions / suggestions / experiences focused upon solutions:
Issue 1:
Be aware of the meme you are dealing with
Involve communities from the beginning. Do not introduce your ideology and
terminology to communities who might be ignorant of stigmatization or not be
aware of the fact that they are stigmatizing. I.e start where they are...
Identify key people in the community including gatekeepers. Use positive health
as the entry-point not HIV or stigma
Use existing structures e.g. churches, schools, teachers, traditional healers to
identify key individuals as well as to facilitate access into the communities
Respect local cultures, customs and traditional structures.
Use edutainment (community drama, song etc.) to break monotony of having
serious meetings and raise interest
Note: Some communities are ignorant of the fact of what stigma is and whether
they are discriminating. The terminology might not exist and it may be difficult to
translate into local vernaculars.
In which case you:
Change the way you look at what the problem is in order to make the problem
not a problem anymore. I.e., if the community is ignorant of HIV-related stigma,
do not isolate the issue and make them aware of it, rather address it under the
umbrella of ubuntu or community support.
28Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Issue 2:
Approach teachers, community leaders, traditional healers etc. as respected
community members.
Use public health / general wellness as the entry point not HIV or stigma
Build them up as spokespeople who will be featured in community based media
speaking on and advocating for positive health.
Issue 3:
Difficulty discussing with communities certain subjects that are taboo or having
discussions with the general community (group):
Solution:
Convene separate meetings for specific homogenous groups
Raise issues in a respectful manner
Issue 4:
Addressing how rural health care workers and churches contribute to stigma. Also
addressing how rural health care workers are ‘used to’ stigmatize
Ensure policies and guidelines are made clear (in the case of lack of
confidentiality). Use trainings etc. if necessary to disseminate and communicate
the policies and consequences in the event of a breach
Integrate health care workers and the services and do not isolate HIV and have
clients served separately
Facilitate trainings and discussions with church leaders to discuss their
perceptions and ‘teachings’ on how to deal with people living with HIV/AIDS.
29Stigma as an obstacle in Service Delivery – Feb 2005
Open Space Technology Conference Working Group Reports
© Empowerment Concepts
Report 15
EMPOWERMENT/SELF-STIGMA: WHAT WILL UNDO THE
(SELF-STIGMA) FEELINGS OF LOW WORTH, SELF-HATE,
SELF-JUDGEMENT, AND FEELING SEPARATE?
Convener : Judy Miller
Contributers: Felicita Hikuam; Criselda Kananda; Heidi-Lee Stockenstrom; Kate
Greenaway; Estelle Jobson; Gerald Shitima (PLHA); Jennifer Mulik; Patricia Ulaya
The problem:
Self stigma: The problem of self-stigma is characterized by isolation. A wall has been created
and within this contained space there is no movement. The thinking is limited and filled with
ideas of right and wrong. There is shame and secrecy. There is fear of death and fear of loss.
The psychological stance of those involved in self-stigma is one of withdrawal and fear. How
can we empower and undo the feelings of self-worth, self-hate, self-judgment, and feeling
separate?
Ideas / actions / suggestions / experiences focused upon solutions:
The fear needs to be met with faith. The self-judgment needs to be met with self-forgiveness.
The hopelessness met with hope. The church could be very helpful in assisting parishioners to
gain faith and hope, and to learn self-forgiveness. We felt that to help people gain the type of
unconditional self-love that they need they might be encouraged to ‘see themselves through the
eyes of Jesus, Mohammed, their source’.
The first step in healing is to know the situation exactly as it is, to ‘as is’ what is happening with
courage and honesty. The walls that create separation must be broken down and movement
must occur – the movement of expressing your feelings, your fears, your grievances, and the
movement towards knowledge, support, and services.
It is very important to take actions with the new knowledge. For example: If you know that good
nutrition will help your health, then plant a garden. Knowledge gives power.
The solution will always involve communication and connection versus isolation and separation.
For example: There was a young man who was living with HIV. He was healthy, and an active
member of the community, promoting AIDS awareness and spreading positive living
information. One day he didn’t appear, and after several weeks of absence his supervisor went
to his house to see what was wrong. She found him sick and depressed. She recognized that
he had TB and took him for treatment. He thought he had full-blown AIDS, and that he would
be seen as a fraud, a failure, and rejected by his community, and that he would die. He was
filled with self-judgment and had forgotten what he knew about TB. When he recovered he had
a vivid memory of what happens when you self-stigmatize.
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