There are some stories that can be told withwords. And then there are the others – the ones that are impossible to be explainedon a simple piece of paper and must be shown through images. Ana Palacios, journalist and photographer, tells us one such story through her documentary, Albinism in Tanzania.
Palacios - who studied Cinema and Photography in Los Angeles - has already used her photography to tell of the desperate situation of orphanages, nursing homes and psychiatric hospitals, as well as documenting vulnerable women evicted in India, leprosy in China, social realities in Ethiopia and the pygmy tribes in Burundi.
Upon hearing of the danger and discrimination experienced by those suffering albinism in Tanzania, where the genetic disease affects one in 1,400 individuals, Palacios felt the need to delve into the matter further through her work and art.
Heading to The Kabanga Centre, a shelter for people with albinism, with the goal of supporting children through a collection of medical and emotional assistance, Palacios soon learnt that this was more than just a disease involving a lack or serious shortage of melanin in the skin, hair and eyes. For many of its sufferers, albinism causes its victims to be maimed by witch doctors to make potions, alienated by society because they are considered magic, and raped through the belief that it is able to cure AIDS.
Speaking with PETRIe contributor, Giulia Catani, Palacios shares her experience and her goal in exposing the dire discrimination and alienation suffered by children with albinism.
Giulia Catani: What made you decide to explore the culture of Tanzania and why did you choose this subject?
Ana Palacios: Pedro Jaen, a dermatologist in Madrid first explained to me the situation of people suffering with albinism in Africa, especially in Tanzania, which is the country with [the] highest prevalence of albinism in the continent. He explained [that] the real danger for this community [is] the witch doctors, but not as much as the sun. The lack of skin protection develops skin cancer in many of them, reducing their life expectancy [to] just 30 years old, and many also have eye problems.
In 2012, I went to The Kabanga Centre, to photograph and document their daily life, supported by the Spanish NGOAIPC Pandora. In 2013, I also went to Moshi by Mount Kilimanjaro, with a group of Spanish doctors, conducted by Pedro Jaen. They train local dermatologists and also operate hundreds of people with albinism suffering skin illnesses [such as cancer] each year, for almost a decade now.
GC: Can you please explain about the levels of discrimination there?
AP: Many families feel that having an albino child is a disgrace, even a curse. Parents think that these children are the fruit of an infidelity of the mother with a white man and repudiate the baby. Children with albinism are less well served in families because they are not going to be able to work and bring home money as effectively than those who have no albinism. The skin, as melamine is not there, will develop skin cancer from a young age if not protected and their life expectancy is reduced. Social problems and superstitions make them discriminated against, segregated, self-conscious and [lacking in] self esteem, triggering many personality issues. All this counts and makes their lives more difficult than those who have no albinism.
GC: What were your feelings once more in contact with the reality of the place? How did you deal with that?
AP: My feelings were contradictory. On the second day of being there with them, you get used to it and forget they are children with scabs and skin burns that will become skin cancer if left unattended. You play, sing, dance, read with them... as you would do with any child. They have the same ingenuous rogue of any other kid their age. You get along with them, enjoy their fun, and then you end upcaring a lot for them. But it is a joy clouded with sadness of knowing they have little chance of surviving cancer. The disease is clearly a much bigger problem than the terrifying [witch doctor] hunts, which are sporadic, although of course that is also a huge and unfair tragedy for this community.
GC: How did you approach such a vulnerable community?
AP: My approach was... with love, with respect and emotion. When I immerse myself in these vulnerable communities and have in front of me unfair situations of inequality and deep sadness, I metabolized all these powerful ingredients into positive energy. My nature is rather weak but in these situations, a force emerges - I still do not know from where - to fight for their causes and try to catalyze change. The camera becomes [an] indispensable tool and it all makes sense as one of those photos sensitizes one person. Living with children with albinism helped by the NGOAIPC Pandora was like graduating in a "master of happiness". I learned a lot from them.
GC: What inspired your images?
AP: As a documentary photographer and journalist my goal is to make visible the invisible. The love and tenderness for those kids gave me the eagerness and strength to do something for them. I wanted my pictures to make a difference for them, so I felt the obligation and responsibility to publish about this issue as much as possible and get an exhibition together and try to move it around as much as possible. I hope that now some people know a little more about their situation and maybe they have decided to help this community somehow. That would be the biggest reward me.
Words: Giulia Catani
Photography: Part of the series 'Albinos in Tanzania' by Ana Palacios