Tanzania in Zanzibar. According to the CIA website,

Tanzania

Tanzania
derived its name from Tanganyika and Zanzibar after achieving their
independence from the British on 9th December 1961. They merged to
form The United Republic of Tanzania on 26th April 1964. Tanzania
also includes the three spice islands of Zanzibar, Pemba and Mafia. Tanzania
consists of more than 120 ethnic groups and with a population of almost 54
million people. In the mainland (Tanzania) there are 99% of Africans of which
95% are Bantu consisting of Asian, European and Arab while in Zanzibar (island)
there are Arab, African, mixed Arabs and Africans. Swahili is the mother
language and English is the official language of the country although Arabic is
widely spoken in Zanzibar.

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According
to the CIA website, on their world fact book page, different religions are
practiced in Tanzania but the most practiced ones are Christianity and Islam.
In the mainland; 61.4% are Christians, 35.2% are Muslims, 1.8% are folk
religion, 0.2% are others and 1.4% are unaffiliated. In the Island of Zanzibar,
the population is of 99% Muslims.

Tanzania
is well known as the place where the world’s first human skull was found,
Olduvai Gorge in Arusha. It is also popular because of its safaris to the
national parks like Serengeti, Ngorongoro Crater and Tarangire. It is also known
for her precious gem stones called Tanzanite that worldwide it is only found in
Tanzania. Agriculturally, Tanzania produces products like sisal, coffee, tea,
cashew nuts, cloves, wheat, pyrethrum, bananas, fruits and vegetables.  Not only that, she is also rich in different
natural resources like hydropower, tin, phosphates, iron ore, coal, diamonds,
gold, natural gas and nickel.

Geographically,
Tanzania is the largest country in East Africa and Africa’s highest point –
Kilimanjaro at 5,895 meters. Kilimanjaro is a volcanic mountain that is
snowcapped despite the fact it is near the Equator. It is also bordered by
three of the largest lakes on the continent; Lake Victoria (the world’s second
largest freshwater lake) in the north, Lake Tanganyika (the world’s second
deepest) in the west and Lake Nyasa (also known as Lake Malawi) in the
southwest.

Albinism in Tanzania

Nearly
one billion people around the world live with some forms of disabilities
(UNESCO, 2009a). A disability is observed as a socially formed problem, and any
barriers created by society need to be eliminated to enable those with
disabilities to enjoy their human rights (UNESCO, 2005; UNCEF, 2009). Disability
also results from the interaction of health conditions, personal (motivation
and self-esteem) and environmental factors (natural and built environments,
support, relationships, services and attitudes). For effective provision of
services and social life, knowledge and attitudes are important environmental factors
(WHO, 2011b). In the educational context, disability focuses on health
conditions which cover body functions and structure, and activities and
participation leading to education and development goals (Hollenweger, 2011).

Disability
means a condition whereby a person is unable to perform as a consequence of
physical or mental unfitness, for instance hearing, visual, cognitive,
emotional, speech or language disability (WHO 2008b, 2013). The Tanzania’s
National Disability Policy (2004) defines disability as “the loss or limitation
of opportunities to take part in the normal life of the community on an equal level
with others due to physical, mental or social factors. With this definition, people
with albinism in Tanzania fall under the category of “disabled people”.

Disabled
people are victims of discrimination, stigmatization and segregation.
Sometimes, they even face more harsh factors that cause them to have higher
risk of health problems especially those that are through the misconceptions
and cultural beliefs in a community to where they live. The government of
Tanzania came up with different strategies to recognize the disabled not only
as people with special needs but as people with equal rights like other people
in the country.

A
good example is “The National Strategy for Growth and Reduction of Poverty”
famously known as MKUKUTA (Mkakati wa Kukuza Uchumi na Kupunguza Umasikini
Tanzania) was adopted in 2005 where it’s main aim is to reduce poverty through
three major outcomes; growth and reduction of income poverty, improved quality
of life and social well-being and good governance and accountability.

In
2004, the Ministry of Labor put “The National Disability Policy” that would
give different guidance regarding disabled people at all levels in the society.
It also pointed out about sensitizing towards change in opinion, attitudes and
political involvement towards recognizing and implementing rights for the
disabled. But even with such efforts, the community still has very little
knowledge on the disabled people and this continues to boost the misconceptions
and beliefs of their existence.

Over
the past few years, reports about the killings of people with albinism in
Africa and particularly in Tanzania have been a silent cry. Africans with albinism
are stigmatized because of their white skin as many of them live in
black-skinned societies. The stigmatization becomes intensive as most of the
people with albinism have disabilities like low vision or blindness and some
even have tendencies towards contracting skin cancers. Many people characterize
people with albinism to the cultural beliefs and myths that attribute magical
powers and them being sub-humans.

To
the present day, Tanzania has had reports of violence against people living
with albinism, including murdering, cutting their body parts and all appears to
be because of traditional witchcraft and killers who make money through selling
albino body parts that they believe will bring them wealth and great fortune.
Not only has the Tanzanian government has morally condemned these killings, but
also worldwide through United Nations Children’s Fund (UNICEF), United Nations
(UN) as well as both European and American parliaments as well.

According
to the Universal Declaration of Human Rights, Article 3, it states that “everyone
has the right to life, liberty and security as a person”. So through
the killings of people with albinism in Tanzania, this has now been regarded as
a serious violation of human rights as it has taken away their right to life,
which they are entitled to have been protected, recognized and respected as
human beings.

The
murders of people with albinism (albinos) came to the attention of the world
through the efforts of a Tanzanian BBC journalist in 2008 (Alum, Gomez, and
Ruiz 2009; Ntetema 2008). Most of the ensuing writing about albino murders in
Tanzania has been by newspaper journalists in media reports, and by bloggers. Several
news articles have called on academics and social workers to apply themselves
to the issue of albino killings (Navuri 2009; Mosha 2009)

Tanzania
has one of the highest frequency rates of albinism in the world. As the killing
of people with albinism gained the attention of the world, it has also been
noted that most efforts are done more by the non-governmental organizations
than the government. Under the Same Sun, Standing Voice (provides low vision
clinics and skin screening/cancer clinics in Tanzania), Global Medical Relief
Fund (provides functional prosthetic limbs for children with albinism in
Tanzania and who have survived malicious attacks that caused them to lose their
limbs), are the organizations that are more involved with PWA. There is also
the Tanzania Albinism Society which is a national non-profit organizational
founded by the PWA in 1978 to protect and empower them.

In
Tanzania, one of the most cruel myth about people with albinism is that the
having sex with a woman with albinism will cure a person of AIDS. This has led
women with albinism to become targets of rape and thus increase the rate of the
disease in some communities. With such beliefs, on December 18th
2014, it stemmed the United Nations General Assembly to adopt a purpose
proclaiming with effect from June 13th 2015 as an International
Albinism Awareness Day. Just to call out for the prevention of the
discrimination and attacks that are against people with albinism, the United Nations
Human Rights Council adopted a resolution in 2013.

 

 

Under The Same Sun

This
is a charitable/non-governmental organization founded by Peter Ash, a Canadian
person with albinism and Vicky Ntetema a former journalist and Tanzania’s BBC
bureau chief in 2008. Through one of Vicky’s report in July 2008 caused the
breakout of the crisis of persons with albinism in Tanzania to the world. They
joined forces to battle the negative forces against people with albinism as
some were seriously mutilated, murdered or even part of their body parts were
trafficked in Tanzania.

UTSS
has been registered in Canada and US, but in 2009 a branch was opened in Dar es
Salaam, Tanzania. Since the branch was opened in Tanzania it
has played a very energetic role in educating the Tanzanian community about
albinism, its causes and also the challenges that the people with albinism in
Tanzania.  In Tanzania, it has been
registered as an international non-government organization and their doors are
opened to public. It has 20 staffs and interns whom half of them are PWA
working for their own people in their own country.

By
just 46 words, they define themselves “as
being passionately committed to ending the deadly discrimination against people
with the genetic condition of albinism. Through education and advocacy we
envision a day when people with albinism will be understood and take their
rightful place in all aspects of society, everywhere.”

UTSS
and Canada share the same belief that people with albinism in the Tanzanian
society will one day take their rightful places as equals and they will also be
able to work hand in hand in transforming the attitudes of their communities.
The Canada Fund for Local Initiatives supports them with different funds that
the organization use to produce documentaries, dramas and even by using the
most well-known celebrities to air the different programs that spread word in
educating the mass about the people with albinism.

The
major activity for UTSS is advocacy and education. When solving a problem,
sometimes you need to go and look up at the root of that problem. So UTSS
provide advocacy and education about people with albinism at the grass roots
levels and all the way up to the law makers not only in the government but all
in the international powers like the UN and AU. They emphasize in the medical
understanding of albinism as not a disease but a genetic condition as well as
the social inclusion in all levels of the society. They strongly emphasize that
the PWA are normal human beings just like everyone else and that people should
not have a hard time accepting them in the community.

The
organization’s vision is that there will come a day that people with albinism
have a rightful place in their own society and that discrimination against them
will just become a memory. And through their education program, UTSS has been
able to give a hand to abandoned and displaced children, by relocating them in
some of the best private boarding schools in Tanzania. As they will shape these
students to be the brightest and future models to their own society and that
the day they believe that people with albinism will have equal opportunity will
happen in the future.

What is ALBINISIM?

Albinism
is a genetically inherited condition that is rare and non-contagious that can
occur to any person in all the countries of the world regardless of their
ethnicity. It happens to people that have both their father and mother carrying
the albinism gene themselves even though they might have not been affect but they
still can pass it over to their children who might also pass it over to their children’s
children. This condition brings about the lack of pigmentation in the skin,
eyes and hair as well as making someone to become vulnerable to the exposure of
the sun and any kind of bright light

People
manifest many different hues, from black to brown to white and shades in
between but the genetics behind this spectrum of skin colors have continued to
be an enigma. The chief determinant of skin color is the pigment melanin, which
protects against ultraviolet rays and exists in cellular organelles called
melanosomes (NOAH, 2004a). The word “albinism”
refers to a group of inherited conditions when people have little or none of
the pigment melanin in their eyes, hair, or skin. They have inherited altered
genes that do not make the usual amounts of this pigment melanin (NOAH, 2004a).

Studies
on albinism reveal that most people with albinism in Africa die in early
adulthood or in middle ages (Okoro, 2006; Aquaron, 1990). Due to African cultures
which embrace supernatural based explanations rather than scientific explanations,
the presence of people with albinism is regarded and treated differently from
other parts of the world and thus people with albinism in African countries are
at higher risks (Lund and Gaigher, 2002).

Like
with other African countries, in Tanzania, there are many superstitions
surrounding albinism and the majority in the community fail to realize that,
albinism is a genetic disorder (Kiprono et al., 2012). Albinism is seen as a
disability of being worthless and useless. 
The beliefs and myths that talk about the causes of this disability and
how the community responds to the people is a bit similar across different
regions in Tanzania. Many of the negative attitudes are due to the lack of
knowledge and mostly because of fear.

In
the past, the killings were performed by the family members or even the whole
tribe. Nowadays, the killings of people with albinism have increased to a point
that the media and government have raised the attention to the people to stop
with these malicious activities towards the people with albinism. These
killings have caused tension in a country which is estimated to have
approximately 170,000 people with albinism according to World Health
Organization.

For
example, the Tanzania, the Albinos Society reported that at least 35 albino
people were murdered in 2008 alone; the main reason for their killing in order
to was to supply witch doctors with limbs, organs and hair for their potions. The
number of murders and mutilations of albino bodies that have occurred are
difficult to estimate.

According
to some reports from Under The Same Sun, they stated that the numbers of
albinos vary widely and no comprehensive studies have been done as it has been
reported that in North America and Europe an estimate of 1 in every 17,000 to
20,000 people have albinism. In Africa, it has been estimated that 1 in every
5,000 to 15,000 people have albinism and with selected populations having
estimates as high as 1 in 1,000. In Tanzania where this organization is based,
it has been estimated to be 1 in 1,400 people.

Different types of Albinism

In
different countries, people with albinism are often picked on, to the extent of
been given different rude and cruel names. But to show them that they are also
humans and they should not be discriminated, the term “person with albinism” (PWA)
has been used and it is preferred to the term “albino” because this puts the
person before the condition rather than equate him to it.

The
following are types of albinism;

·        
Albinism
that affects the skin, hair, and eyes. This type of albinism
is also known as oculocutaneous (ock-you-low-kew-TAIN-ee-us)
albinism (OCA): Not only in Tanzania but in most Sub Saharan African
countries is this most visible form of albinism.  It is said to be the most visible because the
subjects are particularly vulnerable and noticeable in countries that have
nearly dark skinned people.

·        
Albinism
that only affects the eyes: This type is known as Ocular
albinism (OA), and is somewhat un-common. In many cases males are said to be
the verified ones. Normally, the children with OA may have skin and hair color
that are ordinary but slightly lighter than those of other family members. 

·        
Albinism
with HPS: Researchers have also acknowledged a type of
albinism that comes with extra characteristics. This is the Hermansky-Pudlak Syndrome
(HPS).  With just having albinism, people
with HPS have a tendency to bleeding and bruising. Some that are also
associated with HPS suffer lung and bowel disease. But in Tanzania it is said
to be so rare and no records of it can be proven. 

Challenges of Albinism

1.     
Vision
Problems

–         
People with albinism have no clear
vision but can be correctable by the use of sunglasses.

–         
The vision problems are a result of an
abnormal development of the nerve that is connected between the eye and the
brain as well as the low or completely lack of melanin.

–         
Few people with albinism have sufficient
vision to drive a car.

 

2.     
Skin
Problems

–         
Some avoid the sun because it damages
their skin so they have to take safety measures.

–         
Regularly people with albinism have to
wear hats, sunscreen lotion and sun-protective clothing to cover their skin
from the contact to the sun.

 

3.     
Medical
Challenges

–         
Most people with albinism have the
normal life span and have the same medical problems that other people have.

–         
But those with Hermansky-Pudlak Syndrome
may have a short life span because it mostly affects their lung hence causing
lung diseases.

–         
Hot, sunny and tropical climatic
countries like Tanzania to people with albinism suffer medically as some do not
use skin protection thus end up developing life-threatening skin cancers.

–         
In countries that are hot, sunny and
tropical, people with albinism are forced to use appropriate skin protection
like the sunscreen lotions or wear proper clothing for them to enjoy outdoor
activities like normal people.

 

4.     
Social
Challenges

–         
Many are at a risk of being isolated
because their condition is every so often misunderstood.

–         
Families that have members with darker
skin and appearance tend to social stigmatize the persons with albinism in
their own communities.

–         
Difficulty in contacting and sharing
experiences with fellow people with albinism in a community as it is very rare
to find a community with many of them.

 

5.     
Educational
Challenges

–         
Most of those that go to school face the
struggle to read from the board when they are in class because of their vision
impairment.

–         
Many are forced to sit closer to the
board.

–         
Handouts or notes from teachers have to
clear and with very large print.

Aspects of Albinism

The
condition of albinism has several facets that expose persons living with it to multiple
and intersecting forms of discrimination particularly in Tanzania. These include:

§  The
visual aspect or “legal blindness:” Due to the fact that melanin is critical to
the normal development and health of the eyes, persons with albinism, due to
their reduced amount of pigmentation suffer from multiple eye defects. These
include photophobia, foveal hypoplasia, and nystagmus amongst others. The
practical effect of this is that most persons with albinism are myopic and
have, generally speaking, only 20% of normal visual levels.  This means that most persons with albinism
are classifiable as persons with disabilities (legally blind) and are in need
of reasonable accommodation in school, without which most drop out of school in
Tanzania.

§  Skin
cancer which kills most PWA in Tanzania by age 40. The absence of melanin in
the skin causes PWA to be exceptionally vulnerable to sun exposure. They need
basic health education on how to protect themselves whether it is by using
sunscreen – which is not affordable to most of them – or by wearing sun
protective clothing. Without such education, most PWA die slowly from advanced
skin cancer which they often get by working as petty traders in the sun after
they failed to receive an education due to lack of accommodation for their
visual impairment.

§  The
color issue. This is one of the most dangerous aspects of albinism in Tanzania.
PWA is easily noticed in a sea of dark-skinned persons and are unable to
conceal this immutable aspect even if they tried. Their coloring is the crux of
all myths against them and the reason why witchdoctors are hunting them to
harvest their body parts in certain countries such as Tanzania.

Prevailing myths about people with
albinism

According
to UTSS different researches in Tanzania, there are several dangerous myths
about albinism. These include the belied that pasts of PWA can bring wealth and
good luck when ground into witchcraft potion; that they do not die but
disappear; and that PWA are not human beings but ghosts.