TanzaniaTanzaniaderived its name from Tanganyika and Zanzibar after achieving theirindependence from the British on 9th December 1961. They merged toform The United Republic of Tanzania on 26th April 1964. Tanzaniaalso includes the three spice islands of Zanzibar, Pemba and Mafia. Tanzaniaconsists of more than 120 ethnic groups and with a population of almost 54million people. In the mainland (Tanzania) there are 99% of Africans of which95% are Bantu consisting of Asian, European and Arab while in Zanzibar (island)there are Arab, African, mixed Arabs and Africans. Swahili is the motherlanguage and English is the official language of the country although Arabic iswidely spoken in Zanzibar. Accordingto the CIA website, on their world fact book page, different religions arepracticed 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 folkreligion, 0.2% are others and 1.
4% are unaffiliated. In the Island of Zanzibar,the population is of 99% Muslims.Tanzaniais 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 thenational parks like Serengeti, Ngorongoro Crater and Tarangire.
It is also knownfor her precious gem stones called Tanzanite that worldwide it is only found inTanzania. 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 differentnatural 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 issnowcapped despite the fact it is near the Equator. It is also bordered bythree of the largest lakes on the continent; Lake Victoria (the world’s secondlargest freshwater lake) in the north, Lake Tanganyika (the world’s seconddeepest) in the west and Lake Nyasa (also known as Lake Malawi) in thesouthwest. Albinism in TanzaniaNearlyone billion people around the world live with some forms of disabilities(UNESCO, 2009a). A disability is observed as a socially formed problem, and anybarriers created by society need to be eliminated to enable those withdisabilities to enjoy their human rights (UNESCO, 2005; UNCEF, 2009).
Disabilityalso results from the interaction of health conditions, personal (motivationand self-esteem) and environmental factors (natural and built environments,support, relationships, services and attitudes). For effective provision ofservices and social life, knowledge and attitudes are important environmental factors(WHO, 2011b). In the educational context, disability focuses on healthconditions which cover body functions and structure, and activities andparticipation leading to education and development goals (Hollenweger, 2011).Disabilitymeans a condition whereby a person is unable to perform as a consequence ofphysical or mental unfitness, for instance hearing, visual, cognitive,emotional, speech or language disability (WHO 2008b, 2013). The Tanzania’sNational Disability Policy (2004) defines disability as “the loss or limitationof opportunities to take part in the normal life of the community on an equal levelwith others due to physical, mental or social factors. With this definition, peoplewith albinism in Tanzania fall under the category of “disabled people”.
Disabledpeople are victims of discrimination, stigmatization and segregation.Sometimes, they even face more harsh factors that cause them to have higherrisk of health problems especially those that are through the misconceptionsand cultural beliefs in a community to where they live. The government ofTanzania came up with different strategies to recognize the disabled not onlyas people with special needs but as people with equal rights like other peoplein the country. Agood example is “The National Strategy for Growth and Reduction of Poverty”famously known as MKUKUTA (Mkakati wa Kukuza Uchumi na Kupunguza UmasikiniTanzania) was adopted in 2005 where it’s main aim is to reduce poverty throughthree major outcomes; growth and reduction of income poverty, improved qualityof life and social well-being and good governance and accountability. In2004, the Ministry of Labor put “The National Disability Policy” that wouldgive different guidance regarding disabled people at all levels in the society.
It also pointed out about sensitizing towards change in opinion, attitudes andpolitical involvement towards recognizing and implementing rights for thedisabled. But even with such efforts, the community still has very littleknowledge on the disabled people and this continues to boost the misconceptionsand beliefs of their existence.Overthe past few years, reports about the killings of people with albinism inAfrica and particularly in Tanzania have been a silent cry. Africans with albinismare stigmatized because of their white skin as many of them live inblack-skinned societies.
The stigmatization becomes intensive as most of thepeople with albinism have disabilities like low vision or blindness and someeven have tendencies towards contracting skin cancers. Many people characterizepeople with albinism to the cultural beliefs and myths that attribute magicalpowers and them being sub-humans. Tothe present day, Tanzania has had reports of violence against people livingwith albinism, including murdering, cutting their body parts and all appears tobe because of traditional witchcraft and killers who make money through sellingalbino body parts that they believe will bring them wealth and great fortune.Not only has the Tanzanian government has morally condemned these killings, butalso worldwide through United Nations Children’s Fund (UNICEF), United Nations(UN) as well as both European and American parliaments as well. Accordingto the Universal Declaration of Human Rights, Article 3, it states that “everyonehas the right to life, liberty and security as a person”. So throughthe killings of people with albinism in Tanzania, this has now been regarded asa 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 ashuman beings.Themurders of people with albinism (albinos) came to the attention of the worldthrough the efforts of a Tanzanian BBC journalist in 2008 (Alum, Gomez, andRuiz 2009; Ntetema 2008). Most of the ensuing writing about albino murders inTanzania has been by newspaper journalists in media reports, and by bloggers.
Severalnews articles have called on academics and social workers to apply themselvesto the issue of albino killings (Navuri 2009; Mosha 2009)Tanzaniahas one of the highest frequency rates of albinism in the world. As the killingof people with albinism gained the attention of the world, it has also beennoted that most efforts are done more by the non-governmental organizationsthan the government. Under the Same Sun, Standing Voice (provides low visionclinics and skin screening/cancer clinics in Tanzania), Global Medical ReliefFund (provides functional prosthetic limbs for children with albinism inTanzania and who have survived malicious attacks that caused them to lose theirlimbs), are the organizations that are more involved with PWA. There is alsothe Tanzania Albinism Society which is a national non-profit organizationalfounded by the PWA in 1978 to protect and empower them. InTanzania, one of the most cruel myth about people with albinism is that thehaving sex with a woman with albinism will cure a person of AIDS. This has ledwomen with albinism to become targets of rape and thus increase the rate of thedisease in some communities. With such beliefs, on December 18th2014, it stemmed the United Nations General Assembly to adopt a purposeproclaiming with effect from June 13th 2015 as an InternationalAlbinism Awareness Day. Just to call out for the prevention of thediscrimination and attacks that are against people with albinism, the United NationsHuman Rights Council adopted a resolution in 2013.
Under The Same SunThisis a charitable/non-governmental organization founded by Peter Ash, a Canadianperson with albinism and Vicky Ntetema a former journalist and Tanzania’s BBCbureau chief in 2008. Through one of Vicky’s report in July 2008 caused thebreakout of the crisis of persons with albinism in Tanzania to the world. Theyjoined forces to battle the negative forces against people with albinism assome were seriously mutilated, murdered or even part of their body parts weretrafficked in Tanzania.UTSShas been registered in Canada and US, but in 2009 a branch was opened in Dar esSalaam, Tanzania. Since the branch was opened in Tanzania ithas played a very energetic role in educating the Tanzanian community aboutalbinism, its causes and also the challenges that the people with albinism inTanzania. In Tanzania, it has beenregistered as an international non-government organization and their doors areopened to public. It has 20 staffs and interns whom half of them are PWAworking for their own people in their own country.Byjust 46 words, they define themselves “asbeing passionately committed to ending the deadly discrimination against peoplewith the genetic condition of albinism.
Through education and advocacy weenvision a day when people with albinism will be understood and take theirrightful place in all aspects of society, everywhere.” UTSSand Canada share the same belief that people with albinism in the Tanzaniansociety will one day take their rightful places as equals and they will also beable to work hand in hand in transforming the attitudes of their communities.The Canada Fund for Local Initiatives supports them with different funds thatthe organization use to produce documentaries, dramas and even by using themost well-known celebrities to air the different programs that spread word ineducating the mass about the people with albinism.
Themajor 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 UTSSprovide advocacy and education about people with albinism at the grass rootslevels and all the way up to the law makers not only in the government but allin the international powers like the UN and AU.
They emphasize in the medicalunderstanding of albinism as not a disease but a genetic condition as well asthe social inclusion in all levels of the society. They strongly emphasize thatthe PWA are normal human beings just like everyone else and that people shouldnot have a hard time accepting them in the community. Theorganization’s vision is that there will come a day that people with albinismhave a rightful place in their own society and that discrimination against themwill just become a memory. And through their education program, UTSS has beenable to give a hand to abandoned and displaced children, by relocating them insome of the best private boarding schools in Tanzania. As they will shape thesestudents to be the brightest and future models to their own society and thatthe day they believe that people with albinism will have equal opportunity willhappen in the future.
What is ALBINISIM?Albinismis a genetically inherited condition that is rare and non-contagious that canoccur to any person in all the countries of the world regardless of theirethnicity. It happens to people that have both their father and mother carryingthe albinism gene themselves even though they might have not been affect but theystill can pass it over to their children who might also pass it over to their children’schildren. 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 ofthe sun and any kind of bright lightPeoplemanifest many different hues, from black to brown to white and shades inbetween but the genetics behind this spectrum of skin colors have continued tobe an enigma. The chief determinant of skin color is the pigment melanin, whichprotects against ultraviolet rays and exists in cellular organelles calledmelanosomes (NOAH, 2004a).
The word “albinism”refers to a group of inherited conditions when people have little or none ofthe pigment melanin in their eyes, hair, or skin. They have inherited alteredgenes that do not make the usual amounts of this pigment melanin (NOAH, 2004a).Studieson albinism reveal that most people with albinism in Africa die in earlyadulthood or in middle ages (Okoro, 2006; Aquaron, 1990).
Due to African cultureswhich embrace supernatural based explanations rather than scientific explanations,the presence of people with albinism is regarded and treated differently fromother parts of the world and thus people with albinism in African countries areat higher risks (Lund and Gaigher, 2002).Likewith other African countries, in Tanzania, there are many superstitionssurrounding albinism and the majority in the community fail to realize that,albinism is a genetic disorder (Kiprono et al., 2012). Albinism is seen as adisability of being worthless and useless. The beliefs and myths that talk about the causes of this disability andhow the community responds to the people is a bit similar across differentregions in Tanzania. Many of the negative attitudes are due to the lack ofknowledge and mostly because of fear. Inthe past, the killings were performed by the family members or even the wholetribe.
Nowadays, the killings of people with albinism have increased to a pointthat the media and government have raised the attention to the people to stopwith these malicious activities towards the people with albinism. Thesekillings have caused tension in a country which is estimated to haveapproximately 170,000 people with albinism according to World HealthOrganization. Forexample, the Tanzania, the Albinos Society reported that at least 35 albinopeople were murdered in 2008 alone; the main reason for their killing in orderto was to supply witch doctors with limbs, organs and hair for their potions. Thenumber of murders and mutilations of albino bodies that have occurred aredifficult to estimate.Accordingto some reports from Under The Same Sun, they stated that the numbers ofalbinos vary widely and no comprehensive studies have been done as it has beenreported that in North America and Europe an estimate of 1 in every 17,000 to20,000 people have albinism. In Africa, it has been estimated that 1 in every5,000 to 15,000 people have albinism and with selected populations havingestimates 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 AlbinismIndifferent countries, people with albinism are often picked on, to the extent ofbeen given different rude and cruel names.
But to show them that they are alsohumans 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 theperson before the condition rather than equate him to it.Thefollowing are types of albinism;· Albinismthat affects the skin, hair, and eyes. This type of albinismis also known as oculocutaneous (ock-you-low-kew-TAIN-ee-us)albinism (OCA): Not only in Tanzania but in most Sub Saharan Africancountries is this most visible form of albinism. It is said to be the most visible because thesubjects are particularly vulnerable and noticeable in countries that havenearly dark skinned people.· Albinismthat only affects the eyes: This type is known as Ocularalbinism (OA), and is somewhat un-common. In many cases males are said to bethe verified ones. Normally, the children with OA may have skin and hair colorthat are ordinary but slightly lighter than those of other family members.
· Albinismwith HPS: Researchers have also acknowledged a type ofalbinism that comes with extra characteristics. This is the Hermansky-Pudlak Syndrome(HPS). With just having albinism, peoplewith HPS have a tendency to bleeding and bruising. Some that are alsoassociated with HPS suffer lung and bowel disease. But in Tanzania it is saidto be so rare and no records of it can be proven.
Challenges of Albinism1. VisionProblems- People with albinism have no clearvision but can be correctable by the use of sunglasses.- The vision problems are a result of anabnormal development of the nerve that is connected between the eye and thebrain as well as the low or completely lack of melanin.
– Few people with albinism have sufficientvision to drive a car. 2. SkinProblems- Some avoid the sun because it damagestheir skin so they have to take safety measures.- Regularly people with albinism have towear hats, sunscreen lotion and sun-protective clothing to cover their skinfrom the contact to the sun. 3. MedicalChallenges- Most people with albinism have thenormal life span and have the same medical problems that other people have.
– But those with Hermansky-Pudlak Syndromemay have a short life span because it mostly affects their lung hence causinglung diseases.- Hot, sunny and tropical climaticcountries like Tanzania to people with albinism suffer medically as some do notuse skin protection thus end up developing life-threatening skin cancers.- In countries that are hot, sunny andtropical, people with albinism are forced to use appropriate skin protectionlike the sunscreen lotions or wear proper clothing for them to enjoy outdooractivities like normal people.
4. SocialChallenges- Many are at a risk of being isolatedbecause their condition is every so often misunderstood. – Families that have members with darkerskin and appearance tend to social stigmatize the persons with albinism intheir own communities.- Difficulty in contacting and sharingexperiences with fellow people with albinism in a community as it is very rareto find a community with many of them.
5. EducationalChallenges- Most of those that go to school face thestruggle to read from the board when they are in class because of their visionimpairment.- Many are forced to sit closer to theboard.
– Handouts or notes from teachers have toclear and with very large print.Aspects of AlbinismThecondition of albinism has several facets that expose persons living with it to multipleand intersecting forms of discrimination particularly in Tanzania. These include:§ Thevisual aspect or “legal blindness:” Due to the fact that melanin is critical tothe normal development and health of the eyes, persons with albinism, due totheir reduced amount of pigmentation suffer from multiple eye defects. Theseinclude photophobia, foveal hypoplasia, and nystagmus amongst others.
Thepractical effect of this is that most persons with albinism are myopic andhave, generally speaking, only 20% of normal visual levels. This means that most persons with albinismare classifiable as persons with disabilities (legally blind) and are in needof reasonable accommodation in school, without which most drop out of school inTanzania. § Skincancer which kills most PWA in Tanzania by age 40. The absence of melanin inthe skin causes PWA to be exceptionally vulnerable to sun exposure. They needbasic health education on how to protect themselves whether it is by usingsunscreen – which is not affordable to most of them – or by wearing sunprotective clothing. Without such education, most PWA die slowly from advancedskin cancer which they often get by working as petty traders in the sun afterthey failed to receive an education due to lack of accommodation for theirvisual impairment.
§ Thecolor 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 toconceal this immutable aspect even if they tried. Their coloring is the crux ofall myths against them and the reason why witchdoctors are hunting them toharvest their body parts in certain countries such as Tanzania.Prevailing myths about people withalbinismAccordingto UTSS different researches in Tanzania, there are several dangerous mythsabout albinism. These include the belied that pasts of PWA can bring wealth andgood luck when ground into witchcraft potion; that they do not die butdisappear; and that PWA are not human beings but ghosts.