People with Albinism in Tanzania

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 Burningo Blisteringo Skin cancer

o More than 98% ofPWA in Tanzaniadie from skincancer before theage of 40.o 50% developadvanced skincancer by age 30.o100% exhibit skindamage by age 10.

oSensitivity to sunand brightnessoLow vision &additional eyeproblems (“crosseyed”, “lazy eye”,involuntary eyemovement, near orfar sightedness, andmore)

 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 documentedreports of attacksfor body parts inTanzania as ofApril 2012, 78 ofwhich resulted indeath.•The remaining 21are mutilated andtraumatized, likeFatuma.

Dehumanizing beliefs:  Fathered by white men or ghosts of“Ghost”“Nobody” colonialists“Deal”  Contagious“Money”“zeru zeru”  UnintelligentThey don’t die, they just  A curse on their familydisappear.  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 asa health condition, many people withalbinism in Tanzania experience stigma –which can lead to marginalization in allaspects of life:o educationo employmento relationshipso emotional and mental healtho safety

 Name-calling Taunting Limiting educational & employment opportunities Limiting social relationships Social exclusion Grave robbing Violence: mutilation, murder, rape

With thecurrent dangersfacing peoplewith albinism,many,especiallychildren, arefleeing theirvillages.

 Stigma “…  “It is vitally important toexist(s) where recognize that stigma arisesany two of the and stigmatization takes shapethreecircumstances in specific contexts of cultureintersect: and power.” - Parker & Aggletonlow value,exclusion, anddisadvantage”- Royal Tropical Institute

Stigma DiscriminationHuman 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 moneyWhy? – 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 iswidely practiced in  Powerful, respected, awed,Tanzania. influential members ofLong history of allegianceto traditional medicine, communitycombined with limitedaccess to - and trust of –  Special connection to spiritwestern/biomedical healthcare. world, often through ancestralRanked 192 out of 192 spiritscountries for physiciandensity, with a mere 0.008  Holders of thousands of years ofphysicians per 1,000people. 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 mtotoPACT 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 arePEOPLE, notghosts, notsome 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 Suno Red Crosso Adventist Development and Relief Agencyo 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

by mburlot on Aug 13, 2012

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