The Ghost People of Tanzania

Soraya Matos

2017 - Ongoing

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 in Tanzania. Albinism is a congenital disorder characterized by the lack of melanin in the skin, hair, and eyes. Tanzania currently holds the worlds largest population of people with albinism (PWA) at in every 1,400 individuals - but for country with such a large population there is little awareness on the fact that albinism is actually a genetic condition. Witchcraft is at the root of Tanzanian culture, and witch doctors create ‘Albino elixir’ using albino body parts fueling beliefs that the potion brings wealth and power. 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 prevents such a group from becoming involved and benefitting from development. The first chapter of this project, commenced in the fall of 2017 throughout various regions and albinism communities throughout Tanzania. Through powerful testimony and public art, this visual advocacy project explores the identities of 50 Tanzanians with albinism and shares proof of the hardships and heart-wrenching reality that this community has endured. Via large-scale visual documents in the form of diptychs, each exhibits a portrait and written passage of individuals with albinism expressing their experiences, emotions, and thoughts – as they have been silenced for so long. These pieces provide the opportunity for individuals to tell their own story rather than someone telling it for them to break the cycle of injustice and marginalization.

The next phase of this project aims to expand and provide education through visual storytelling in the utmost secluded areas of Tanzania (such as the Great Lakes region). The succeeding intention is to prompt movement towards eradicating traditional beliefs rooted in hate and reframe the societal conversation on the albinism condition. This project upholds the concept of integration and instilling dignity back into the community by equipping individuals with tools needed to demand their deserved rights and encourage self-advocacy. The grant distribution will be focused on facilitating informative panels targeting accurate information on the condition while dispersing educative diptychs highlighting the stories of PWA. By spreading advocacy via seminars and photography, in villages, government facilities, universities, schools, hospitals, a targeted approach will be conducted to reach rural secluded areas of the country, where killings and abuse towards PWA has remained prominent. Through the secured partnerships with Tanzanian NGO’s, Under the Same Sun, documentation, interviews, and establishing presence within these relationships, insight (visual and written) will be obtained to produce a work that empowers the albinism community and documents the role of migration in our world and to the human experience.

Through the PHM 2018 Women Photographers Grant, this opportunity will allow for a deeper focus on documenting Tanzanians with albinism through combating the misconceptions of the condition and community. Ultimately, this grant will allow the opportunity to further my artistic skill set and help me produce a level of work to present to galleries in aim to curate a traveling exhibition through public and private institutions to advocate and drive towards obtaining full and equal human rights for Tanzanians with albinism.

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  • *The portraits of the fifty participants of The Ghost People of Tanzania: visual advocacy project that was produced in the Fall of 2017. These individuals were interviewed and photographed for a public exhibition advocating for the inclusive human rights of people with albinism.

  • “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 sunrays.
    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.”

  • “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.”

  • “ 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.”

  • “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.”

  • “Fatuma Hussein.
    I am 38 years old. Entrepreneur.

    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.”

  • Emmanuel Festo.

    A drawing of his attack.

  • “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.”

  • “ 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.”

  • “ 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.”

  • “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.”

  • “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.”

  • “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.”

  • *Visual Advocacy Posters placed outside the classroom of a local grade school, school girls approach to read passages. – Mikocheni, Dar es Salaam, Tanzania.

  • *Owner proudly exhibits the diptych on the back of his bajaji (tuk-tuk) – Mwanza, Tanzania.

  • *An individual offers to help put up posters on a bus stand, and others gathered. In Tanzanian culture, these public places are spots of hang outs for many social gatherings– Kunduchi, Tanzania.

  • *A Passer-by stops and approaches to read posters, and others gathered – Mikocheni, Tanzania.

  • *Posters placed outside of grade school that has the attendance of three students with albinism. In this particular school, there has been no attempt to educate students on the condition or the abuse that has been occurring throughout the country towards individuals with the albinism condition - Kigamboni, Tanzania.

  • *Locals gather outside a market stand to read albinism stories. – Kariakoo, Dar es Salaam, Tanzania.

  • “His name is Baraka.” “Baraka means a blessing”. They are called, zeru zeru, which in Swahili translates to the ghost people, these are the persecuted people with albinism in Tanzania. Albinism is a congenital disorder characterized by the lack of melanin in the skin, hair, and eyes. Currently, Tanzania holds the world’s largest population of people living with albinism at in every 1,400 individuals - but for country with such a large population there is little awareness on the fact that albinism is actually a genetic condition. Witchcraft is at the root of Tanzanian culture, and witch doctors create ‘Albino elixir’ using albino body parts fueling beliefs that the potion brings 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. 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.

    Baraka is one of few Tanzanians with albinism to have access to proper education and a support network. When he was a young boy he was taken from his home and sent to Alliance Secondary School in Mwanza, Tanzania. In his local village, Baraka had received threats and attempted attacks of those wanting to sell his limbs for witchcraft. Unfortunately, this is the reality for many Tanzanians with albinism. Baraka now lives amongst the school boarding with security and is an outstanding student and peer. This image was taken on his graduation day, as he proudly lined up to receive his diploma. This photograph is a part of a visual advocacy project aimed at eliminating discrimination and drive towards the inclusive human rights of the Tanzanian albinism community. Though I was introduced to Baraka by a mutual acquaintance, I attended as a spectator and supporter, and had no influence or direction in the posing of this photograph.