THE SWAHILI PHRASE zeru zeru translates to “ghost people” and in Tanzania refers to one of every fourteen hundred citizens with albinism. The phrase is both descriptive and prophetic, as much a metaphor for the white skin resulting from the condition’s absence of melanin as it is a reflection of societal treatment. From the beginning of their lives, people with albinism are insulted, mocked, harassed, and isolated. When they are killed in this part of the world, their bodies are often never recovered. Like ghosts, they disappear.
Faustine Emiliani, thirteen years old.
I am in Standard Six. 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.
Mariam Ibrahim, 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.
Pendo Sengerema, sixteen years old.
It was 9 a.m. 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.
Throughout Dar es Salaam, the Lake Victoria region, and Zanzibar, people with albinism face a prejudice that excludes them from equal human rights. Many are unable to find employment because their condition is viewed as a disability, one that makes them less competent. One young man I met dreamed of joining a professional soccer league, but no one would allow him on their team because they felt he’d be a bad omen. Another individual was expelled from Catholic school on the basis that the church would never welcome a priest with albinism. Incalculable persecution falls on children, who endure years of bullying from schoolmates and peers.
Joseph Migila, twenty-three 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 issue, in educating the society and the country as a whole on what is albinism and how to deal with challenges facing people with albinism.
Kevin Kulwa, fourteen years old.
Since I came here (Government Center), I have never been back home for seven 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.
Raymond Muganyizi, twenty-nine 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.
Albinism suffers a violent affiliation with witchcraft in Tanzanian culture, with some claiming the condition is a curse to be stamped out and others claiming AIDS can be cured by having sex with a woman with albinism. A widespread belief is that body parts taken from people with albinism can be made into potions— “Albino elixirs”—that bring about good fortune or wealth. These kinds of misconceptions manifest a constant and overwhelming threat to the lives of those with albinism. Individuals are abducted, dismembered, and sold on the black market for commerce and occult ritual. The body of a person with albinism can sell for over $75,000, more than ten years’ wages for many Tanzanians. Such a thin fabric, a single layer of skin, precludes an entire population from dignity and the right to live without fear, turning them into nothing more than game.
Naila Omary Shaury, twenty-three 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.
Fatuma Hussein, thirty-eight years old.
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.
Through a collaboration with the organization Under the Same Sun, this project documents fifty Tanzanians with albinism. Portraits of individuals I photographed were displayed in a public exhibit along with these handwritten personal stories. Many of these stories provide brief biographies: occupations, educations, goals. Scolastica Masanja hopes to become an international sprinter. Others share the challenges they’ve faced from albinism. One boy, Emmanuel Festo, draws a picture of the attack during which his arm was amputated and stolen.
Emmanual Festo, eighteen years old.
Hadija Maarufu, twenty-six years old.
I am 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.
The common thread through each story, however long or short, is human voice. Here, participants have the opportunity to present themselves, one of many rights not given by a society that strips them of their humanity. Distributed throughout Tanzanian villages, schools, community spaces, bus stops, boats, tuk tuks, and markets, the portraits and stories collected by this project help to educate Tanzanian citizens about the truths of albinism. Audiences are afforded a moment of direct connection with the subject, and the subject is afforded a voice in that connection. Between the camera and each colorful backdrop, a face. Behind every face, a spirit, stepping out. O
I would like to thank Soraya Matos for this amazing article. So much work and care must have gone into the preparation. The pictures and stories touch my heart deeply. I was not aware that this was such an issue. These young people seem to have so much courage.
I am tremendously grateful for this article.. Some of my university students have gone to Tanzania to teach and work in Catholic schools but I was until now unaware of the suffering and persecution of persons born with this genetic variation . My heart goes out to them for their courage..
God bless you Soraya Matos for your moving coverage of albinism in Tanzania. Your article and outreach project with the UNDER THE SUN organization was a brilliant community awareness campaign which surely touched many hearts as it did mine. I am an albino woman on the Pacific island of Guam, U.S.A. I was deeply horrified and heartbroken to see such disturbing reminders of the violence and suffering my fellow albinos must endure especially in Tanzania and throughout the world due to ignorance and hatred. Your work has shocked me into action to reach out and help starting with the albino families on our little island of Guam. Thank you and God bless your work, Orion Magazine, my albino brothers and sisters throughout, and all the people who care of our lifelong challenges.
This article is beautiful. Thank you for elevating my awareness on the issue. I will do my part to help spread the word so that others can know about this as well. Thank you.
Such beautiful children. How they are treated, the danger they are in, breaks my heart.
May all beings be free from suffering and the causes of suffering.
May all beings know happiness and the roots of happiness.
Thank you Soraya Matos for helping to raise awareness through this contribution.
Several years ago I was privileged to translate a novel about a Tanzanian girl with albinism entitled ‘Then She Was Born’ by Cristiano Gentili. The details narrated in the book coincide perfectly with those presented here–facts that I was, previously, totally unaware of. The courage I discovered through Adimu, the protagonist of the book, and that I recognize in the stories here serves as an example for all.
This is so heartbreaking and makes me very angry.
Great work. Standing up to tyrants was advice Walt Whitman gave long ago. This project is a way to do this and bring light to dark room. Bullies and tyrants love to work in the dark. By the way one of my favorite singers for so many years in Austin,Tx was Malford Milligan, ablino. His powerful soulful singing was a gift to me, to his audience and even to the world. So all I can think is that each one of the persons reveled through this project as well as all albino persons should be given the chance to share their gifts of light and love with the rest of us. Educate those that will accept such beliefs and shame and punishment those that hold on to outdated and cruel lies. Albino people deserve the same legal and moral rights as every other skin color does.
Thank you for your article Soraya Matos. I had heard of this, and have travelled to Tanzania, but it is the human faces on the story that are powerful to affect change. Such courage among those young people. It is hard to believe folks are discriminated against for something they have no control over. So much work to do for a Just World.
Soraya Matos: THANK YOU! Your article was one of the greatest, yet so very tragic and heart wrenching which I have ever read. In my first 50 years of life: having actually seen, and even participated in due to my direct involvement in war, many evil, demonic events committed beyond most’s understanding! There is only one real answer that will bring about an absolute total change in this terrible situation because of the evil that controls this world. There MUST be such a change! What change will it take? The biggest of all Ms Matos, IS “every human on the earth today must have a change – not of mind – but a change of their heart.” As noted previously, in my first 50 years sadly my heart was totally “dark.” Without feelings; numb! Then at 45, I found anyone can change their figurative AND literal heart. Was not easy, taking 5 years of hard work: with self-examination being the largest single one for me. At 80 years of age, I’ve truly found peace in my heart. In getting to that point the biggest “tool” was learning EMPATHY! My prayer is that “you and this powerful story of real people – and events – will be just one beginning” for those affected in Tanzania, and all others dealing with – just this one evil -worldwide!
Please Note: Before submitting, copy your comment to your clipboard, be sure every required field is filled out, and only then submit.