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Applying Stigma Reduction Best Practices to
Objective:
 Research best practices in health-
 related stigma reduction for
 possible application to the problem
 of stigma and violence towards
 PWA in Tanzania
 Research on issue of stigma and violence
  towards PWA in Tanzania.
 Research on stigma and stigma reduction
  programs.
 Literature review of best practices in health-
  related stigma reduction, particularly
  HIV/AIDS and mental illness.
 Interview with NGO working on issue, Under
  the Same Sun.
o   Population of nearly 43
    million people.
o   One of the world’s 48 Least
    Developed Countries.
o   Nearly 70% live below the
    international poverty line
    $1.25/day.

o   Ranked 152 out of 187 on
    UNDP’s 2011 Human
    Development Index.
What is Albinism?

•   Medical condition
•   Lack of melanin
•   Skin is chalky white
•   Eyes are very light
•   Hair is fair
•   Genetic
•   Inherited
•   Incurable
Approximately 1 in
  1,429 People in
  Tanzania have
     Albinism
   Health problems: skin
    and eyes

 Stigma                     Myths
 Discrimination             Misconceptions
 Social exclusion           Misinformation
 Violence                   Superstition
   Lack of pigment causes
    virtually no protection
    from the sun’s harmful
    rays.

   Albinism results in extreme
    skin sensitivity to the sun
o Burning
o Blistering
o Skin cancer
o More than 98% of
PWA in Tanzania
die from skin
cancer before the
age of 40.

o 50% develop
advanced skin
cancer by age 30.

o100% exhibit skin
damage by age 10.
oSensitivity to sun
and brightness

oLow vision &
additional eye
problems (“cross
eyed”, “lazy eye”,
involuntary eye
movement, near or
far sightedness, and
more)
   Stigma, discrimination,      But starting in 2007, new
    social exclusion, and         elements were added
    even violence have            resulting in extreme acts
    been experienced by           of violence including
    PWA in Tanzania for           hunting, mutilating,
                                  raping, and killing due to
    millennia.
                                  new superstitious beliefs
                                  regarding charms for
                                  wealth/success and a
                                  cure for HIV/AIDS.
The following video provides information about the
  violence against people with albinism in Tanzania:

  http://www.youtube.com/watch?v=R0XigrdAJKQ
•99 documented
reports of attacks
for body parts in
Tanzania as of
April 2012, 78 of
which resulted in
death.

•The remaining 21
are mutilated and
traumatized, like
Fatuma.
Dehumanizing beliefs:        Fathered by white men or ghosts of
“Ghost”
“Nobody”
                              colonialists
“Deal”                       Contagious
“Money”
“zeru zeru”                  Unintelligent
They don’t die, they just    A curse on their family
disappear.
                             A cure for HIV/AIDS
Dehumanization
Objectification             A charm to bring wealth and success
Commodification
                             All within a deep-rooted context of
                              traditional beliefs & superstitions
Due to a lack of understanding of albinism as
a health condition, many people with
albinism in Tanzania experience stigma –
which can lead to marginalization in all
aspects of life:
o education
o employment
o relationships
o emotional and mental health
o safety
 Name-calling
 Taunting
 Limiting educational & employment
  opportunities
 Limiting social relationships
 Social exclusion
 Grave robbing
 Violence: mutilation, murder, rape
With the
current dangers
facing people
with albinism,
many,
especially
children, are
fleeing their
villages.
 Stigma “…                   “It is vitally important to
exist(s) where                 recognize that stigma arises
any two of the
                               and stigmatization takes shape
three
circumstances
                               in specific contexts of culture
intersect:                     and power.”
                                              - Parker & Aggleton
low value,
exclusion, and
disadvantage”
- Royal Tropical Institute
Stigma


    Discrimination


Human Rights Violations
 Traditional Healers (not all)
 Buyers
 Hunters
 Those who let it happen
 Hired hands, earning relatively little money
 for attacking PWA and taking their body
 parts.

 Sometimes relatives or neighbors, either
 directly or indirectly.
 Miners
 Fishermen
 Businessmen
 Politicians
 Those with money


Why? – To improve their fortunes, gain wealth
 and success, a copious catch, find gold,
 secure a business deal or win an election.
 According to the Albino Association of
 Tanzania, the price for a complete set of
 albino body parts – comprising limbs,
 genitals, ears, tongue, hair and blood – has
 gone up from 75,000 US dollars to 200,000
 US dollars within just a few years.
Traditional medicine is
widely practiced in            Powerful, respected, awed,
Tanzania.
                                influential members of
Long history of allegiance
to traditional medicine,        community
combined with limited
access to - and trust of –
                               Special connection to spirit
western/biomedical health
care.                           world, often through ancestral
Ranked 192 out of 192          spirits
countries for physician
density, with a mere 0.008
                               Holders of thousands of years of
physicians per 1,000
people.                         knowledge of spiritual, physical,
                                magical healing
   Inform and raise awareness
   Include targeted community interventions
   Utilize local opinion leaders as change agents
   Increase contact with members of the stigmatized group
   Integrate members of the stigmatized group into
    mainstream community life/society
   Educate and empower members of the stigmatized group
   Ensure strategies and interventions are context-appropriate
   Acknowledge the wider environment
 Disseminate correct information in
  compelling ways.
 Close the KAP gap through participatory
  methods, such as facilitated discussion.
 Pay attention to the pieces of stigma
  reduction program design and how they
  influence and support one another.
 Tailor message according to audience.
 Differences between ethnic groups, age
  groups, urban and rural populations,
  profession, gender, etc.
 Example: Schools – influence the youth as
  their opinions are taking shape; “change
  takes a generation.”
 Culturally: how do people get their
  information, what language and what forms
  are most effective?
 Example: Pact Tanzania using music for
  stigma reduction towards OVC.
Usimtenge mtoto
PACT TANZANIA - OVC
                                          Don’t discriminate
   3 anti-stigma songs sung by           against a child
    15 Bongo Flava artists,
    launched at rally:
     Tuonyeshe upendo
      Show us love

     Usimtenge mtoto
    Do not discriminate against a child

     Haki za mtoto
      Rights of the child
A short glimpse of some empowerment songs
  from children with albinism at an albinism
  awareness day for PWA in Tanzania – to
  encourage them and counter self-stigma.
  These songs can also be used to counter felt
  stigma at events for the wider community:
       http://www.youtube.com/watch?
                v=71MQtAaGxAg
                  Cue to 7:52
 Trusted members of the community to whom
  others look for guidance.
 Can include elders, religious or community
  leaders, celebrities (such as musicians).
 Example: Balozi leaders as change agents.
PWA are
PEOPLE, not
ghosts, not
some abstract
“thing.”
 Being separate reinforces “us” and “them”
  thinking.
 Integration optimizes contact.
 Example: Children with albinism integrated into
  mainstream schools, with modifications to address
  their physical needs, resulting in children growing
  up alongside each other, playing together, knowing
  one another. Must be accompanied by stigma
  reduction education and modeled and monitored
  by teachers and other school staff.
 To eliminate self-stigma and counter felt
  stigma.
 To raise the awareness of PWA re: their
  health condition.
 To create opportunities for equality
  (education, social inclusion, employment).
 Stigma stems from complex web of socio-
  cultural, economic, and political elements.
 Stigma reduction efforts must take the wider
  picture into account.
 Collaborate where possible.
 At least, know your role is only part of the
  solution.
 Multi-level, multi-channel stigma reduction
  programs are more effective.
There are a limited number of NGOs working
 on issues related to people with albinism in
 Tanzania, including:

o Under the Same Sun
o Red Cross
o Adventist Development and Relief Agency
o Tanzania Albino Society
 Documentary White and Black: Crimes of
  Colour
 Screenings in communities with discussion,
  on television, radio script version, reached
  thousands
   Learn from these (and other) successful best practices.
   A possible intervention point could be at the level of the
    traditional healer.
   Precedence for this in HIV/AIDS awareness raising programs.
   A number have spoken out about the practice – that it is a
    false belief.
   They are respected members of the community.
   Highlight that it is in their best interest.
   Considering the strength of traditional belief in Tanzanian
    culture, this could be the most effective way in the long run to
    deal with this.
   Must be done carefully – with the protection of PWA of
    utmost importance.
People with Albinism in Tanzania

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People with Albinism in Tanzania

  • 1. Applying Stigma Reduction Best Practices to
  • 2. Objective: Research best practices in health- related stigma reduction for possible application to the problem of stigma and violence towards PWA in Tanzania
  • 3.  Research on issue of stigma and violence towards PWA in Tanzania.  Research on stigma and stigma reduction programs.  Literature review of best practices in health- related stigma reduction, particularly HIV/AIDS and mental illness.  Interview with NGO working on issue, Under the Same Sun.
  • 4. o Population of nearly 43 million people. o One of the world’s 48 Least Developed Countries. o Nearly 70% live below the international poverty line $1.25/day. o Ranked 152 out of 187 on UNDP’s 2011 Human Development Index.
  • 5. What is Albinism? • Medical condition • Lack of melanin • Skin is chalky white • Eyes are very light • Hair is fair • Genetic • Inherited • Incurable
  • 6. Approximately 1 in 1,429 People in Tanzania have Albinism
  • 7. Health problems: skin and eyes  Stigma  Myths  Discrimination  Misconceptions  Social exclusion  Misinformation  Violence  Superstition
  • 8. Lack of pigment causes virtually no protection from the sun’s harmful rays.  Albinism results in extreme skin sensitivity to the sun
  • 10. o More than 98% of PWA in Tanzania die from skin cancer before the age of 40. o 50% develop advanced skin cancer by age 30. o100% exhibit skin damage by age 10.
  • 11. oSensitivity to sun and brightness oLow vision & additional eye problems (“cross eyed”, “lazy eye”, involuntary eye movement, near or far sightedness, and more)
  • 12. Stigma, discrimination,  But starting in 2007, new social exclusion, and elements were added even violence have resulting in extreme acts been experienced by of violence including PWA in Tanzania for hunting, mutilating, raping, and killing due to millennia. new superstitious beliefs regarding charms for wealth/success and a cure for HIV/AIDS.
  • 13. The following video provides information about the violence against people with albinism in Tanzania: http://www.youtube.com/watch?v=R0XigrdAJKQ
  • 14. •99 documented reports of attacks for body parts in Tanzania as of April 2012, 78 of which resulted in death. •The remaining 21 are mutilated and traumatized, like Fatuma.
  • 15. Dehumanizing beliefs:  Fathered by white men or ghosts of “Ghost” “Nobody” colonialists “Deal”  Contagious “Money” “zeru zeru”  Unintelligent They don’t die, they just  A curse on their family disappear.  A cure for HIV/AIDS Dehumanization Objectification  A charm to bring wealth and success Commodification  All within a deep-rooted context of traditional beliefs & superstitions
  • 16. Due to a lack of understanding of albinism as a health condition, many people with albinism in Tanzania experience stigma – which can lead to marginalization in all aspects of life: o education o employment o relationships o emotional and mental health o safety
  • 17.  Name-calling  Taunting  Limiting educational & employment opportunities  Limiting social relationships  Social exclusion  Grave robbing  Violence: mutilation, murder, rape
  • 18. With the current dangers facing people with albinism, many, especially children, are fleeing their villages.
  • 19.  Stigma “…  “It is vitally important to exist(s) where recognize that stigma arises any two of the and stigmatization takes shape three circumstances in specific contexts of culture intersect: and power.” - Parker & Aggleton low value, exclusion, and disadvantage” - Royal Tropical Institute
  • 20. Stigma Discrimination Human Rights Violations
  • 21.
  • 22.
  • 23.
  • 24.  Traditional Healers (not all)  Buyers  Hunters  Those who let it happen
  • 25.  Hired hands, earning relatively little money for attacking PWA and taking their body parts.  Sometimes relatives or neighbors, either directly or indirectly.
  • 26.  Miners  Fishermen  Businessmen  Politicians  Those with money Why? – To improve their fortunes, gain wealth and success, a copious catch, find gold, secure a business deal or win an election.
  • 27.  According to the Albino Association of Tanzania, the price for a complete set of albino body parts – comprising limbs, genitals, ears, tongue, hair and blood – has gone up from 75,000 US dollars to 200,000 US dollars within just a few years.
  • 28. Traditional medicine is widely practiced in  Powerful, respected, awed, Tanzania. influential members of Long history of allegiance to traditional medicine, community combined with limited access to - and trust of –  Special connection to spirit western/biomedical health care. world, often through ancestral Ranked 192 out of 192 spirits countries for physician density, with a mere 0.008  Holders of thousands of years of physicians per 1,000 people. knowledge of spiritual, physical, magical healing
  • 29. Inform and raise awareness  Include targeted community interventions  Utilize local opinion leaders as change agents  Increase contact with members of the stigmatized group  Integrate members of the stigmatized group into mainstream community life/society  Educate and empower members of the stigmatized group  Ensure strategies and interventions are context-appropriate  Acknowledge the wider environment
  • 30.  Disseminate correct information in compelling ways.  Close the KAP gap through participatory methods, such as facilitated discussion.  Pay attention to the pieces of stigma reduction program design and how they influence and support one another.
  • 31.  Tailor message according to audience.  Differences between ethnic groups, age groups, urban and rural populations, profession, gender, etc.  Example: Schools – influence the youth as their opinions are taking shape; “change takes a generation.”
  • 32.  Culturally: how do people get their information, what language and what forms are most effective?  Example: Pact Tanzania using music for stigma reduction towards OVC.
  • 33. Usimtenge mtoto PACT TANZANIA - OVC Don’t discriminate  3 anti-stigma songs sung by against a child 15 Bongo Flava artists, launched at rally:  Tuonyeshe upendo Show us love  Usimtenge mtoto Do not discriminate against a child  Haki za mtoto Rights of the child
  • 34. A short glimpse of some empowerment songs from children with albinism at an albinism awareness day for PWA in Tanzania – to encourage them and counter self-stigma. These songs can also be used to counter felt stigma at events for the wider community: http://www.youtube.com/watch? v=71MQtAaGxAg Cue to 7:52
  • 35.  Trusted members of the community to whom others look for guidance.  Can include elders, religious or community leaders, celebrities (such as musicians).  Example: Balozi leaders as change agents.
  • 36. PWA are PEOPLE, not ghosts, not some abstract “thing.”
  • 37.  Being separate reinforces “us” and “them” thinking.  Integration optimizes contact.  Example: Children with albinism integrated into mainstream schools, with modifications to address their physical needs, resulting in children growing up alongside each other, playing together, knowing one another. Must be accompanied by stigma reduction education and modeled and monitored by teachers and other school staff.
  • 38.  To eliminate self-stigma and counter felt stigma.  To raise the awareness of PWA re: their health condition.  To create opportunities for equality (education, social inclusion, employment).
  • 39.  Stigma stems from complex web of socio- cultural, economic, and political elements.  Stigma reduction efforts must take the wider picture into account.  Collaborate where possible.  At least, know your role is only part of the solution.  Multi-level, multi-channel stigma reduction programs are more effective.
  • 40. There are a limited number of NGOs working on issues related to people with albinism in Tanzania, including: o Under the Same Sun o Red Cross o Adventist Development and Relief Agency o Tanzania Albino Society
  • 41.  Documentary White and Black: Crimes of Colour  Screenings in communities with discussion, on television, radio script version, reached thousands
  • 42. Learn from these (and other) successful best practices.  A possible intervention point could be at the level of the traditional healer.  Precedence for this in HIV/AIDS awareness raising programs.  A number have spoken out about the practice – that it is a false belief.  They are respected members of the community.  Highlight that it is in their best interest.  Considering the strength of traditional belief in Tanzanian culture, this could be the most effective way in the long run to deal with this.  Must be done carefully – with the protection of PWA of utmost importance.

Editor's Notes

  1. HIV/AIDS, mental illness, epilepsy, leprosy, TB
  2. Sources: United Nations, UNDP 2011 HDI
  3. Photo: Albino children in a school for the blind in Tanzania bbc.co.uk
  4. Data source: http://news.bbc.co.uk/2/hi/africa/7518049.stm Photo: Rick Guidotti @ Positive Exposure - (https://www.facebook.com/underthesamesun#!/photo.php?fbid=183908551630025&set=a.183908531630027.39506.183870941633786&type=3&theater )
  5. Photo: http://albinos-in-tanzania.blogspot.com/2009/07/tanzania-albinos-center-in-moshi.html
  6. Photos: www.headdowneyesopen.blogspot.com
  7. Photo: http://www.nowpublic.com/world/red-cross-assists-albinos-are-hunted-body-parts
  8. Info: http://www.underthesamesun.com/sites/default/files/PWA%20Attacks%20in%20Africa.pdf ; Photo: http://www.ifrc.org/en/news-and-media/news-stories/africa/tanzania/tanzania-albinos-are-a-walking-deal/
  9. Dehumanizing and objectifying, then commodification
  10. Photo: whiteandblackmovie.com
  11. From Stigma and discrimination by Dr. Ajith Karawita, MBBS, PgDip Ven, MD, National STD/AIDS Control Programme http://www.aidscontrol.gov.lk/nsacp/Web%20uploads/HIV%20Stigma%20Reduction%20Project/Stigma%20and%20discrimination.pdf
  12. From Stigma and discrimination by Dr. Ajith Karawita, MBBS, PgDip Ven, MD, National STD/AIDS Control Programme http://www.aidscontrol.gov.lk/nsacp/Web%20uploads/HIV%20Stigma%20Reduction%20Project/Stigma%20and%20discrimination.pdf
  13. Points of intervention, especially culture.
  14. http://www.ifrc.org/en/news-and-media/news-stories/africa/tanzania/tanzania-albinos-are-a-walking-deal/
  15. % doing this but not representative of entirety
  16. Photo: A Tanzania Red Cross Society (TRCS) volunteer holds the hand of an albino ... trust.org