THE GHOST PEOPLE OF TANZANIA

   They are called, zeru zeru, which in Swahili translates to the ghost people - these are the persecuted people with albinism (PWA) in Tanzania.

   Currently, Tanzania holds the world’s largest population of people living with albinism with 1 in every 1,400 individuals

 

.... But for a country with such a large albinism population there is little awareness of the fact that albinism is a genetic condition. Witchcraft is at the root of Tanzanian culture, and  ‘Albino elixir’ has become a formula of which witch doctors brew albino body parts fueling beliefs. They spread the lie that these potions bring wealth, power, and good fortune.

   As a result of these misconceptions, the albinism population lives under the daily threat of abuse, abductions, and ritual killings.

 
 
 
 

   When human rights are ignored, the marginalization of certain persons within a society prevent such a group from becoming involved and benefitting from development.

   People with albinism have been rendered worthless by a society that denies their existence, yet their bodies hold a high commercial value for those that believe they hold magical power.

   These individuals live their entire life hidden. Hidden from the sun, hidden from light, hidden from others, hidden in the shadow of the world.

 
 
 

 

 

This visual advocacy project explores the identities of

50 Tanzanian people with albinism

 

The aim for every photograph produced is to combat the discrimination and attacks against people with albinism through education and advocacy. 

To allow individuals to tell their own story rather than someone tell it for them drives towards

breaking the cycle of injustice, poverty, and marginalization. 

 

 By pushing the boundaries of the medium, in the means of 300 large-scale diptychs, these photographs are displayed in communities throughout Tanzania as a means of a public space for an encounter between a subject and its audience. 

Through powerful testimony and public art, this project aims to create a bridge for Tanzanian society to become informed of the condition and advocate for the

inclusive human rights of people with albinism. 

THE PROJECT

* Alongside each portrait, you will find each individual's written passage describing their experience, story, or report of what it means to suffer from this condition in Tanzania. 

Please go ahead and hover over each image for English translation or click on each photograph for a larger viewing.

 

My name is Nancy Raymond Masaki. I am 19 years old. I am a young girl with albinism. Albinism is a condition of lacking melanin that prevents sun rays from affecting the skin.

In Tanzania, albinism is still a challenge especially in the streets, where there is a lot of stigma because many people do not have an education on how to live with people with albinism. 

Also in Tanzania, especially in Dar es Salaam, for the most part of the year it is very hot. The heat troubles us and has severe effects on our skin. 

 
 

Kevin Kulwa

I am 14 years old.

Since I came here (government center), I have never been back home for 7 years now.

I can’t go home because of my safety.

I wish to see my family again.

I can’t go home because I will be kidnapped by the thugs.

 

 
 

Mariam Ibrahim.

I am twelve years old.

I feel that albinism is a normal condition because I see myself just like other people, I am not isolated or discriminated.

I want to tell society that do not discriminate people with albinism because we are also human beings, like other people, we all have equal rights and we need to be loved like everybody else.

 

 
 

Emmanuel Festo

A drawing of his attack. 

 
 

My name is Naila Omary Shaury

I am 23 years old. I am a Tanzanian with albinism.

In my life, ever since I was born I have been raised by my single mother alone. My father abandoned me because I was born with albinism.

In the community that I live in, many people consider me not a normal human being. They think I am unable to do work and they thought I don’t have the brains to study as other children do. When I was in school there were some teachers who didn’t understand that I have a challenge of low vision, they couldn’t help me and so I went through a very hard time.

But my mother struggled for me and supported me and gave me hope, that I should never give up for all the things that happen to me.

 
 

My name is MARTHA YAKUB MINENDA.

I am 28 years old. I am a girl with albinism.

Albinism is a disorder of lacking melanin (pigmentation) and low vision.

CHALLENGES THAT I FACE IN DIFFERENT SETTINGS

i.              Being despised – when you want to do something in the society and you are regarded as incapable because of your albinism.

ii.             Being discriminated in different levels of leadership. Most people in the society believe people with albinism cannot lead the society or a group of people.

iii.            Low vision – it causes us to miss different opportunities, considering that technology rules at the moment.

ADVICE

My advice is for civil society organizations and other organizations to partner up and educate the society especially in schools, workplaces, and hospitals because stigma in these areas is extreme.

 
 

Raymond Muganyizi (29 years old)

Education Assistant - UTSS Mwanza.

The challenge of low vision which is caused by lack of pigmentation to people with albinism was the reason for being a target of discrimination by my relatives. After my father died I was abused by my uncle. It was mandatory for me to tend to our cassava and corn farm and often it happened that I accidentally would cut the roots of the plants. I would be beaten with sticks all over my body and in the evening I would be stripped naked and they would tie my arms and feet using a rope. Then I would be tied to an anchor and beaten without mercy. My whole body would be covered with blood and I would be left that way for nearly two hours. Then they would untie me and my uncle would not allow me to eat dinner that night.

They did not want to listen when I tried to prove that I did not cut the roots or crops intentionally but it was because of my low vision. 

 
 

Fatuma Hussein.

I am 38 years old.

Entrepeneur.

I feel normal to have albinism but sometimes it is especially difficult to obtain a job. People think I am incapable while the truth is that I can do almost anything.

One day I was alone at home and three men came and asked for my husband. I told them he was away on a work trip. Suddenly, I had a feeling that something did not feel right, so I ran to my brother-in-law's home which happened to be nearby and I told him of the incident. He went to my home and found three men waiting outside my house. When they saw him, they fled. We went to report to the police and through the investigation they discovered that my husband was also involved. He had allegedly sold me to the thugs so that they could kidnap and kill me for money. He was arrested but later released. My brother-in-law helped me prepare everything to divorce my previous husband. We are now separated and I was able to escape to Mwanza where I brought my children for a new life and have now remarried. 

 
 

Pendo Sengerema

I am 16 years old

It was 9 AM and we were having our dinner, then three strangers came and we welcomed them, but immediately they asked to leave. Suddenly, those people came back and started chasing us. They caught me and pinned me down and chopped off my arm and ran away with it. Then my mother started screaming and neighbors came to help and took me to the hospital.

 
 

NAME: Joseph Migila

AGE: 23 years old

There are many challenges facing people with albinism, from their childhood up to adulthood.

Some of these challenges are low vision and inability of their skin to withstand sun rays.

The society has a very bad perception on albinism and, it has failed to appreciate and care for people with albinism.

In order to evade or deal with this problem, it is better that it becomes a national issues, in educating the society and the country as a whole on what is albinism and how to deal with challenges facing people with albinism.

 
 

My name is Hadija Maarufu, a girl with albinism who lives in Tanzania. Obviously I love my country with all my heart. But the biggest challenge is fear and living with anxiety that you can be a subject of violence and the pain of being called bad and discriminating names. Both of these things have deprived my confidence of walking alone especially during the night.

Another thing that was a major issue happened during my studies; teachers, friends and parents in general didn’t know that I have low vision. For the most part, this deteriorated my educational performance. Also, this challenge is the one that contributes to poor educational performance of people with albinism.

 

ALLY SALEHE

25 YEARS OLD

ORDINARY DIPLOMA HOLDER IN COMMUNITY DEVELOPMENT AND SOCIAL WORK.

Introduction

a.    What is albinism? – it is the absence of pigment in the skin, eyes and hair. This condition is caused by the presence of albinism recessive genes in both parents namely father and mother.

b.   Challenges – Challenges facing people with albinism are as follows:

i.               Low vision

ii.             Frail skin

iii.            Negative views in the society (not being accepted in the society)

iv.            Dirty talk from the society members

v.             Threats against life.

My name is Zainabu Bakari.

I am 15 years old.

I am in Standard 6 at St. Anne Marie.

Albinism is a normal condition because to have albinism is not a ticket to be discriminated or isolated. What I want to tell society is that, don't stigmatize people with albinism, it is a normal condition, we are normal people like everybody else. 

MICHAEL JUMA

I am 7 years old.

I am in Standard 1

Albinism means a skin disorder.

I was being insulted because of my condition.

JOHN ISSACK

Age: 23

1.     My life and my albinism condition

Until the point I knew who I was, I had already experienced a certain degree of stigma in my community. My parents tried a lot to instill in me a sense of self-confidence early before I became a grownup.

2.     Experience and the albinism condition-

I was so confident and this led to many people having confidence in me. I did well in my studies and passed very well.

3.     What I don’t like…

People with albinism in Tanzania are not given priority in different kinds of sports and talents.

4.     I am content with my albinism condition

I am so happy because I am different and that I do different things and to me that is very good. So, I don’t have a problem at all and I thank God for creating me this way. 

My name is Edgar Masoud. I am 13 years old. I am in standard 7 at St. Anne Marie Primary School.

For me to have albinism is just a normal feeling, and on the other part I see it as a good thing because I get much support from Under the Same Sun. Likewise, I don't feel bad to have albinism because through this condition my parents love me more than anybody else at home. 

My name is Josephat Igembe

I am 37 years old

After completing primary school in 1994, I did an exam to join a certain seminary school for my secondary education, whereby my parents believed I would get a decent education. I passed the entry exam and was chosen to join Makoko Seminary in January 1995.

However, three months later, I was expelled from school because of my condition as a person with albinism, and I was not supposed to be in that school because it was a special school for preparing Catholic fathers and there was never a father with albinism. The head of school Fr. John Kerema, who is now deceased, claimed that he was given that order from the late Bishop Justin Samba, Head of Catholic Diocese of Musoma, who saw me at school for the first time when he came for the Ash Wednesday Divine Service.

That is an event that made me lose self-confidence in so many things. 

My name is Showa Richard. I am thirty years old.  I am a fourth born in a family of seven children, and only two have albinism.

In my life journey there were challenges I faced through my mother ‘relatives. First of all they considered me a person who couldn’t do anything, especially in studies.

Also in my society the challenges that I face are being called bad names such as “zeru zeru”.  Another challenge is when I was in the university, students discriminated me thinking I am incapable and that I didn’t have the brains because I had albinism, but I didn’t give up and I studied diligently until I topped them in the class. I did very well and eventually I completed my university studies and was employed at Under The Same Sun. I thank God for that because now the society and relatives have accepted me after having studied hard and secured a job through Under The Same sun and I am thankful to be part of the family. 

Lulu Hassan Kitele

19 years old

Albinism is the absence of pigmentation, that’s what it means to be born with albinism. For example, both of our parents have albinism genes and that’s why we were born with albinism.

Challenges that I face:

-       Inability to see far

-       Being despised and called names

-       Being seen worthless, that I cannot have ant contribution to the society.

-       Lack of education on people with this skin disorder.

Martin Haule

40 years old.  Born 07.07.1977

-The biggest challenge I got in my life as a person with albinism was being stigmatized immediately after completing my undergraduate degree at the University of Dar-es-Salaam.

-I did an interview with a certain finance institution in the country and luckly I was selected to work with them. But on the day that I went to submit my certificates I was discriminated and denied an opportunity to work with that institution. 

Saumu Juma Waziri

I was born in 21/01/1997. I am a person with albinism and there are six children in our family; 4 girls and 2 boys.

What is albinism? A person with albinism is one who lacks pigment in her body which happens when two parents each one a carrier of albinism genes, also albinism is a disorder of lacking pigment in the skin, eyes and hair.

Challenges: Honestly, a person with albinism goes through a lot of challenges in her life, for example, personally I have gone through many challenges, such as being despised by my own father and relatives.

 Omary Mfaume

Born: June 8, 1977

Albinism is a hereditary biological condition whereby a living thing or person is born without pigmentation. This condition affects eyes, skin and hair.

People with a albinism are faced with many challenges especially here in Tanzania, which are as follows:

-       Having a skin that is easily affected by sun rays, which cause skin cancer, and it is affecting many people with albinism in Tanzania.

-       Low vision, which has caused people with albinism, especially students to be unable to do well in school and thus affect their learning.

-       Lack of correct information on albinism which has prompted stigma and discrimination to people with albinism.

-       Deterioration of security and safety. This has caused killings and chopping off of their body parts

Amina A. Mwamkinga

I was born in 09/01/1995

I come from Mbeya region

Albinism is a disorder in livings things (plants and animals) whereby they lack skin pigmentation. Albinism is the absence of melanin in the skin, eyes and hair.

Challenges facing a person with albinism:

Being stigmatized in the society

My name is Rhodah Julius

I am 9 years old

I am in Standard 3

Albinism is a person who is faced with albinism challenges

 

What kind of clothes must a person with albinism put on?

Name: BARAKA ISAYA

Age: 29 years old.

Albinism – absence of pigment in the body, a condition that affects the skin, hair and eyes.

This disorder occurs when both parents are carriers of albinism genes. A child with albinism is born when both of her parents, mother and father, have albinism in their genes.

Albinism occurs worldwide, in all creatures, in all tribes, in all religions and in both gender.

It is not appropriate to call someone an “albino”. The appropriate way is to call him a person with albinism. The word “albino” undermines a person from a normal human being, because an albino can be a bird, an animal or any other living thing.

Challenges facing people with albinism:

-       Low vision

-       Skin that is easily affected by sun rays.

-       Deterioration of security and safety

-       Stigma in the society.

Stigma to people with albinism starts at the family level, and then the society in general and even in schools.

Also, the issue of employment is a big challenge to people with albinism because we go to school and graduate but to get employed is very hard for us. I can attest to this because, personally I am a holder of a bachelor degree but I am still looking for a job.

This is due to the negative attitude of many employers who think we are incapable., but the truth is that we can do any job effectively. 

Mhangwa Deus Nyanda

12 years old

I am in Standard 3

I praise the citizens for protecting us.

 

 

Grace Wabanhu

31 years old

Student Academic Officer - UTSS

Because of my albinism my father abandoned us - me and my two siblings, who are all people with albinism. It happened when I was two years old. He chased away our mother and claimed that we were rotten children. So we lived alone and my mother did her best to make sure we were able to obtain an education, and sometimes she received help from others. I do not know what a fathers love feels like and I get emotional when I see others have a male figure in their lives to call fathers.

Second, due to my albinism condition I have a challenge of poor eyesight which was a major setback in my studies. I completed a degree in primary education through the help of other students who read materials out loud for me and would transcribe from the blackboard and books. It is still a very big challenge in my life. 

My name is Happy Makungu

I am 12 years old

I am in Standard 2

One morning, my mother went to the farm and my father went to his job and left me at home. Three men came and started chasing me. I ran inside the house and hid. They came inside and found me, I started to scream but they covered my mouth. My sister-in-law who was nearby heard the screams and came quickly while screaming. They got hold of her and covered her mouth as well. But the neighbors had already heard the screams and came and apprehended those men and took them to the police. 

Mariam Staford

Age: 34

 

It was October 17, 2008 at midnight. I was sleeping and woke up because I heard a loud noise. At the time, I was living at home in Ngara Kagera with my young son. When I awoke, I heard people knocking down my front door. I wanted to turn the lights on but I was scared. Suddenly, a group of men came into my room and the only person I recognized was my neighbor. He instructed them to hold me down as they started to attack. First, they chopped off my right arm with a dull machete. Next, they began to chop off the left arm. I was screaming in pain and they continued.

The attackers then ran off with my right arm but they were not able to successfully cut off my left arm, and so it remained hanging off of my body. The neighbor ran from my house but a group of people stopped him asking what was going on with the screaming. The neighbor gave no reply so the villagers lit up their torch to see his face and instead they saw my blood all over his shirt.

The villagers took him back to the house and found me helpless and in excruciating pain with no right arm and my left arm dangling off of my body.  I began to cry for help and kept repeating the neighbor’s name. George Jostone. 

My village was too far and remote from any first aid and I had to wait until the next morning to be seen by a doctor.  I visited a local clinic but as soon as I arrived the doctor said there was nothing he could do and that I would die. I had been losing a lot of blood and I needed immediate treatment. The local administrator called the police and begged them to escort me to a larger hospital.

As soon as I arrived, I entered a coma. I had been sleeping for 3 days when I woke up. The Tanzanian police stood all around me and protected me during my treatment. I stayed in the hospital for 5 months. During my time in the hospital people from the government brought news stations to come interview me in regards to the attack.

During my 2nd day in recovery, I discovered my neighbor (the attacker) was arrested. The neighbor then gave names of 6 other people that were involved in the attack. They were held in a jail cell until the judicial system decided to bring it to national court. The first two sessions of court brought witnesses that testified with different stories because they did not want to get involved. This caused a major issue in the trial as the judge stated there was not enough testimony to convict the attacker. The neighbor was freed and found not guilty.  

Once I was fully recovered, I knew I could not go back to my village and I asked the government for a safe place to live. The government promised to find a plot for me upon my release.  Once I left, I visited my new home but it was not adequate for me.  The plot was far into the bush and extremely remote – I would not be able to survive since I now had to rely on other people to perform daily tasks for me.

The district commissioner promised to look for a replacement and I waited for 6 months for nothing to happen. He told me to go back to my village as there would be increased security but in 2009 there existed the highest rates of people with albinism attacks.  I then decided to speak to reporters on the fact that the government was not protecting me.

That night, Vicky Ntetema contacted me stating that Under the Same Sun can provide safe housing for my son and myself so that we could live like normal humans. UTSS made arrangements for me to move to Dar-es-Salaam and provided sponsorship to go to Washington D.C. in USA to get prosthetic arms.

Upon my return, UTSS provided a scholarship to a vocational school in to learn how to commercial knit. When I came back to live in my new home, I was very happy.  I am still fighting every day to obtain a fair trial. As soon as the trial ended I called my lawyer and stated that ‘I was the one who went through the attack and that I know my rights. I am relying on god for justice and one day I will get my rights.’ 

Name: Fatuma Mohamed

- I am 9 years old.

- I am in standard 2.

- I don't know the meaning of albinism.

- I think it means a European.

- I feel good to be this way.

- I am fifth born in my family.

- I do not know if I am discriminated.

Scolastica Masanja

I am 12 years old

I am in Standard 6

I feel normal to be this way.

I like to sprint.

Challenges

-        Low vision

-        Being insulted

My dream is to be an international sprinter. 

SUNDI SHINGISHA

13 years old

Standard 5

I feel good because I live in peace and our security here is very tight. 

Thanks so much our beloved guests.

I was brought here at the center because there were many killings, so they brought here for my safety and security so that I can continue with my studies. 

TATU HUSSEN MAKILA

25 YEARS OLD

Albinism is a hereditary condition whereby a person lacks pigment in the skin, eyes and hair (it is not a transmitted disease).

-       It is passed on from generations to generations.

-       It can only happen when both parents have albinism genes even if they personally don’t have albinism.

Personal challenges facing people with albinism:

-       Inability of their skin to withstand sun rays and eyes being disturbed by bright light, so because of their skin being affected by the sun, they can easily get cancer, which is major problem in African countries for e.g. in Tanzania because of the sunny weather and severe heat.

Challenges from the society:

-       Negative attitude from the society on albinism

-       People with albinism are used for superstition beliefs. E.g. cutting their body parts for witchcraft.

-       Stigma from the family and being seen as different beings whereby some people believe people with albinism don’t die.

-       Having spots on the skin is normal.

-       Regarded as a worthless person.

Solutions to people with albinism:

-       Wearing clothes that protect them from sun rays. E.g. long-sleeved shirts, caps, sunglasses, and to completely avoid jobs that expose them to direct sun, and to use protective lotion.

Conclusion:

-       Albinism is not an obstacle to development and equality in the society. It is important to design systems and include people with albinism so as to ensure their involvement in all aspects of the society by considering friendly infrastructure as well as their basic needs. 

SHAFU CEHZENI

FROM DAR ES SALAAM

CERTIFICATE IN EDUCATION

I.              INTRODUCTION – Albinism is a disorder whereby a living organism lacks pigment in the skin, eyes and hair, which is caused by the presence of albinism genes in both parents.

II.            CHALLENGES – a person with albinism is facing many challenges, but I will mention just a few.

-       Low vison – This is a major setback in carrying out different activities and it takes us a long time to complete a normal task.

-       Stigma

-       Threats against life

-       Discrimination based on color

-       Being called bad names

-       Being despised etc.

In fact a person with albinism is able to work just like any other person, he can:

-       Think

-       Implement activities that are within his/her capacity

-       Study and excel, even more than people without albinism etc.

CONCLUSION:

Get rid of negative views on albinism, perhaps this person with albinism whom you despise might become your leader, your boss etc.

WISDOM IS KEY. CHANGE. 

Evelyne Msenga (22 years old)

I am in Form 6 at St. Anne Marie

- Albinism, a condition whereby one lacks melanin in the body. 

- I can see, though not very clearly, but I can ready very well.

- I live very well with my schoolmates, they do not tease me.

- I am in the only person in my family who has albinism.

- I feel good to be this way, because this is the way God created me.

- In today's world, people with albinism are considered unequal with other people who do not have albinism, the situation is still challenging.  

My name is Rabia Hassani.

I am 25 years old.

 Meaning of albinism?

Lacking pigment in the skin, eyes, and hair in the society that she comes from.

Challenges that I face in the community around me is being discriminated based on gender, and because of this skin disorder I am incapable of doing certain jobs. Also, I need to carry on with my studies because the level that I have reached is not enough for me to get employed. Therefore, I ask for your help. 

RATIFA HAMISI

I am 12 years old

I am in Standard 5

One day my aunt came home with the intent of killing me. My mother hid me inside the house. When I asked my mother why she was hiding me, she replied that my aunt was looking to kill me because of my condition. After my aunt failed to located me, she went away. Then my parents decided to bring me here at this center. 

FATUMA PAUL

16 years old

Mkolani School, FORM 1

 What does albinism mean? – is a person who lacks pigment a result of a father or mother, then a child with albinism is born.

Problems that I face are

-        Lack of pigment

-        Lack of pigment in the eyes

-        Lack of pigment in the hair

My name is Mihayo Majige. 

I am 12 years old.

I am in Standard 3.

I feel good to have albinism.

I am thankful to get education.

I am happy that my family loves me.

 

 

 

 

 

My name is Faustine Emiliani

I am 13 years old

I am in Standard 6

I just feel good to have albinism. From the time when I was born I have never had any problem, God has helped me indeed.

Nevertheless, I hear news about killings of people with albinism. 

Esther Mashaka

Form 1

15 years old

Albinism

Lack of melanin (pigmentation) in the eyes, skin and hair.

Challenges

-        Low vision

-        Being insulted

-        Being stigmatized

-        The sun