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 Discrimination Social exclusion Violence

Myths Misconceptions Misinformation 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% 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, social exclusion, and even violence have been experienced by PWA in Tanzania for millennia.

But starting in 2007, new elements were added resulting in extreme acts of violence including hunting, mutilating, raping, and killing due to 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.

Fathered by white men or ghosts of colonialists

Contagious Unintelligent A curse on their family A cure for HIV/AIDS A charm to bring wealth and

success All within a deep-rooted

context of traditional beliefs & superstitions

Dehumanizing beliefs:

“Ghost”“Nobody”“Deal”“Money”“zeru zeru”

They don’t die, they just disappear.

DehumanizationObjectificationCommodification

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 educationo employment o relationshipso emotional and mental healtho safety

Name-callingTauntingLimiting educational & employment

opportunitiesLimiting social relationshipsSocial exclusionGrave robbingViolence: mutilation, murder, rape

With the current dangers facing people with albinism, many, especially children, are fleeing their villages.

“It is vitally important to recognize that stigma arises and stigmatization takes shape in specific contexts of culture and power.”

- Parker & Aggleton

Stigma “…exist(s) where any two of the three circumstances intersect: low value, exclusion, and disadvantage”- Royal Tropical Institute

Stigma

 Discrimination

 Human Rights Violations

Traditional Healers (not all)BuyersHuntersThose 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.

Powerful, respected, awed, influential members of community

Special connection to spirit world, often through ancestral spirits

Holders of thousands of years of knowledge of spiritual, physical, magical healing

Traditional medicine is widely practiced in Tanzania.

Long history of allegiance to traditional medicine, combined with limited access to - and trust of – western/biomedical health care.

Ranked 192 out of 192 countries for physician density, with a mere 0.008 physicians per 1,000 people.

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.

PACT TANZANIA - OVC Usimtenge mtotoDon’t discriminate against a child

3 anti-stigma songs sung by 15 Bongo Flava artists, launched at rally:

Tuonyeshe upendoShow us love

Usimtenge mtotoDo not discriminate against

a child

Haki za mtotoRights 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 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.