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Albinism, photography Denisse Ariana Pérez
Photography Denisse Ariana Pérez

Stunning portraits of young African men living with Albinism

Photographer Denisse Ariana Pérez collaborates with three young men to raise awareness around the condition

Photographer Denisse Ariana Pérez’s latest series Albinism, Albinism: An Exploration of Light, Nature and Albinism in East Africa captures the ethereal beauty of boys born with albinism – an absence of pigmentation in the eyes and skin and hair. But, unlike others before it, it is not a documentary piece. While taken in Dodoma, Tanzania, Pérez’s story doesn’t focus on the country’s history of violence against people with albinism. It doesn’t illustrate the segregation, abuse, dismemberment and murder – fuelled by witch doctors and a belief that people with albinism, especially children, hold magical powers – that the community faces. Instead Albinism, Albinism centres on beauty. It is a celebration of people living with the genetic condition which affects how their bodies produce melanin. Featuring three boys, Nasibu, Joseph, and Emmanuel, the story was created in continuation of Pérez’s wider practice of using photography and storytelling to highlight marginalised people, particularly LGBTQI+ and Afro communities. By showcasing them as protagonists, she hopes to shift the narrative. “I’m over tragic stories being the only ones told about these communities and about Africa,” the photographer sighs when we meet to talk about the project. “There’s so much beauty to be brought to light.”

For the young men at the heart of the story, the shoot was a new experience. University student and Bongo Flava (Tanzanian hip hop) musician Nasibu, who also goes by the stage name Termino Smile, describes being made to feel inferior and unable to share his talents, creativity and love for music in the past. “I’ve faced challenges. I’ve been segregated,” he says. The musician goes on to explain his enthusiasm of being centred, exploring new artistic practices and representing others with albinism. “During the shoot, I learned my own ‘photo style’; new ways I can position and move my body, or parts of my body, which make me feel free. I also learned new skills and approaches to dressing (through styling). That makes me proud.” And when he looks at the photos now? “I feel very comfortable and very good when I see these photos with my fellow albinos,” he says. “I hope that the community will be proud of this beautiful series.”

“I hope that the community will be proud of this beautiful series” – Nasibu

To capture that beauty, Pérez worked closely with activist groups on the ground in Tanzania. Without their support, Pérez explains, Albinism, Albinism could never have happened. In 2009, Tanzania saw a spike in attacks against people with albinism and the government has since put in place strict measures to protect the community. It is now a capital crime to kill someone with albinism and many children have been relocated into shelters (a move which has been criticised). Widespread reeducation policies continue to be developed and have made a huge impact on the media, which plays an important role in raising awareness. These essential measures have also made it much more difficult to work with the community. Pérez’s first point of contact was Josephat Torner, albinism activist, founder and namesake of the Josephat Torner Foundation, an organisation dedicated to “Promoting the right to life, liberty, and security of persons with albinism in Africa”. After a chance crossing of paths with Torner in Arusha, Pérez was invited to join him for International Albinism Awareness Day in June, where she later met the boys. “It was important for Josephat to trust me before letting me through the door,” she explains. “People with albinism still need to be vigilant about their safety.”

Below, we speak with the photographer to find out more about the birth of the series, the essential role of local activist groups and how things are changing for people with albinism in Tanzania today.

What made you want to shoot this story?

Denisse Ariana Pérez: The theory of a story is never what drives me to take photos. It’s always the human interaction and it was Josephat’s passion for the issue in this video that captured my attention. I wanted to learn about albinism in Tanzania, but I didn’t have many expectations because of how difficult it would be to gain permission. It wasn’t until I met Josephat and he invited me to come and learn by interacting that I thought seriously about shooting. When I met the boys face to face I could see the beautiful colour of their hair and skin, the sun damage they had received and I could feel how warm and open they were. That was when I knew I wanted to do this story.

Who are the boys in the story and how easy was it to meet and shoot with them?

Denisse Ariana Pérez: Emmanuel is a volunteer at the Hope Delivery Foundation (HDF) and Joseph and Nasibu are university students  – Nasibu is also a Bongo Flava musician. The younger generation of people with albinism is more vocal and ambitious and, since my goal was to represent them through an artistic lens and not as victims, the boys were excited to be part of the project. Yes, they told me about their struggles, but mostly we talked about their dreams and aspirations. They are part of this galvanised generation who want to leave a mark and be seen as beautiful, creative and worthy. Many Tanzanian people with albinism struggle to access well-paid jobs and they work as volunteers, so, to help the boys out in the ways I could, I covered some of their expenses and gifted them sunscreen.

How important is it for you to work with organisations on the ground when you’re capturing a sensitive story like this?

Denisse Ariana Pérez: Connecting with local organisations is more and more important for me – not only because of access but because, through them, I can learn about the issue in-depth and hear first-hand accounts. These organisations protect the people they represent, so they’re absolutely the first step for building trust with anyone I photograph. They play a seminal role in the community: they educate people about albinism, they empower people with albinism to pursue education and take on professional roles in society and get them access to specialised medical support. Many people still don’t know that albinism is a medical condition; they’re completely unaware of how it affects those living with it. The organisations also bring people with albinism together to form a community, which is so empowering.

How can photography support organisations’ aims?

Denisse Ariana Pérez: The government has invested in re-educating the people, religious congregations and witch doctors about albinism and implemented protective laws, but there’s still work to do. There are over 120,000 people with albinism in Tanzania – possibly many more. Organisations are run primarily by volunteers and they need funding to build the necessary infrastructure and pay volunteers. Skin treatment, sunscreen and sun eyewear are still scarce and very expensive for most people with albinism. Smaller organisations don’t always have the resources they need to communicate in a way that catches wider audiences’ attention: in these visually-driven times, I feel like this is where my work can help. By merging awareness with visual stimulation, I hope that people will become interested in these stories and will be inspired to get involved, learn and donate.

How easy was it to find people to shoot with once you were in Dodoma?

Denisse Ariana Pérez: There are two sides to this answer. Over the last few years, there’s been more Western interest in people with albinism. They’ve mainly been used in fashion and ‘alternative’ beauty campaigns, which has brought more attention to Tanzania. Because of this, there are restrictions in place to stop people with albinism from being exploited and the government is careful not to allow just anyone to document the centres where people live collectively. They’re especially strict about children.

But, things have been changing. Thanks to those protective measures, there have been no reported attacks against people with albinism in the last two years and, now their safety has been achieved, their goals have evolved and they want to be accepted. They’re integrating into society and taking up space. They want the same access to education and jobs as other Tanzanians and they want more specialised medical care. They want to show their talents and have their voices heard. Now, for the first time in Tanzania, there are members of the government with albinism and, as I travelled on a bus from Dar es Salaam to Dodoma, I watched a Tanzanian music video where the love of the artist’s life as a man with albinism. She chooses him over a ‘normal’ black man, which would’ve been unheard of before. So, there is more protection around centres where people with albinism live, but it’s easier to approach individuals.

How did you manage the logistics of this shoot in an unfamiliar place?

Denisse Ariana Pérez: I wanted to find a water space to photograph the boys. Water is ever-present in my work but I really wanted it for this one. Finding water sites in Dodoma is almost impossible because it’s quite arid but sometimes you’ll find miraculous pockets of water there. I spent a day scouting for locations with a local journalist who has a son with albinism and is very involved in the cause. The first earthy-looking location is on a rocky hill by a small man-made lagoon – an oasis in the middle of the dryness. We had to really hustle to get there because you could only reach it by motorcycle. The second place was a dried-out river bed underneath a bridge. It was totally parched. There were weeds and bushes growing everywhere, but as I walked I saw these tiny kids bathing in a shallow basin of water from far away. I could see how the sun reflected off this little pool and the colours were so beautiful I knew it was right. 

What’s the feedback been from the boys and the organisations about the shoot?

Denisse Ariana Pérez: The organisations are really happy with the project. Dr Mukassa, the founder of HDS, just sent me a message to say how pleased he was that I was able to use my work to encourage people to support the organisations and people with albinism. The boys were so joyful after the shoot, despite some shivering after posing in the cold water! They were happy to have been part of a creative process and to have been centred in the story. We’re still in touch and Nasibu shares his new songs, which are amazing. I’m currently working on raising funds to help with fees for his education. I’m looking forward to seeing how this series can grow in the future and, hopefully, helping them prosper.

Special thanks to: Damas Mukassa and Ramadhani Chomoka from the Hope Delivery Foundation and Josephat Torner and his volunteers. To Nasibu, Emmanuel and Joseph for their openness, enthusiasm, and for being in front of my camera for this project. And to ASKET for the garments