I first became aware of this issue in Senegal in 2004. I was approached by a Senegalese mother; she held out a child towards me and asked me to “take this child back to where it belongs”. The women had been left by her husband because she had given birth to a white child. She thought because her child had white skin it must belong to me. The child had Albinism. When I returned to the UK and shared my experience, I soon realized how little people knew about the subject and how at the time few NGO’s were involved with helping people with albinism in Africa.
After a similar experience whilst shooting in Sierra Leone I realised this was a widespread problem across the continent. I felt it was a hugely important issue that had received so little exposure to the world and felt that a film could help.
While making this film over 6 years I saw many other journalists come and go with their stories on the killings, but the murders were never my primary motive for making the film. I had started filming before the killings were first reported in 2006, so the film follow life before and during the escalation of the murders. The resulting film I feel is a true reflection of the extraordinary strength people show when faced with such adversity. It was vital to me to try my best to represent this subject in the correct way. This subject has now become much more than a film to me, but a huge part of my life.
I wanted to make an observational documentary that did justice to the enormity of the issues being discussed, but tell it through two very intimate personal journeys. Letting these two people speak out for others with albinism all over Africa. An important thing for me was to give them the space and time to tell their story. This was key in discovering the right level of sensitivity, while remaining true to the facts of what was unfolding in front of us.
I spent a lot of time researching where to make the film and who to follow. During the research period I found a farm in Senegal where 20 people with Albinism had fled to as a result of being badly abused and stigmatized in their community. In Zimbabwe, I found women with Albinism who had been raped in the belief that it would cure HIV Aids.
Finally I came across Ukerewe Island, a remote Island in Tanzania’s Lake Victoria that was home to an unusually large number of people living with Albinism. They had formed a society on the Island to become stronger in numbers and create a place where they could come together and share their stories and experiences.
For me Ukerewe represented a microcosm of the thousands of isolated people living with Albinism across the continent. This was to be the start of a film and a long relationship I have had with the Ukerewe Albino Society. At the end of 2006, I traveled to Ukerewe to document the Island’s Albino Society as they carried out a survey to determine how many people were living with Albinism on the Island.
This survey was a natural starting point for me, I followed the survey into remote areas and it was here that I found Vedastus aged 14 (One of the lead protagonists in the film). The experience was heartbreaking. He spoke clearly and emotionally about his life, from the tightness of his skin to the verbal and physical abuse he received day after day. He had an inner strength, an underlying innocence and childlike openness. Each day he got up and went back to the same people that treat him so badly, hoping that tomorrow would be different. He was desperate to go back to school. I decided to follow him on this journey.
I met Josephat at a protest he had organised in 2007 following the first murder of Arif. I think he saw me as a way to get his message out there. I was searching for a positive character and I knew instantly that he was the one to tell this story through.
Many of those I interviewed including Vedastus had never spoken of their isolation before and for the first time someone wanted to listen to what they had to say. People were willing to tell their stories and to do so with unabated truth and raw honesty to the facts. They spoke of loneliness and a fear of harm, yet often people delivered them with insurmountable dignity. Telling a story and having it heard can be an empowering process, and because of this many people we found were keen to share their experiences with us. Veda was very young and was in a really bad state when we found him. Having such a small and intimate team helped to create a comfortable environment for him to open up to. I worked with a wonderful local translator who was able to communicate to Veda in his local dialect. I grew very close to Vedastus over the 6 years of filming and am still in regular contact with him now.
It gave him the platform he was looking for. He often says that we were ‘looking for each other’. It was also a cathartic one for him, it took me a while to get past the ‘campaigner’ front he sometimes guards his emotions behind and it was a real battle to get past that and for him to open up about the stigma and discrimination that he himself endured while growing up. I think it was an empowering process for him. He saw the film for the first time at the world premiere in Holland last year. I was very nervous about what he would think about it. I think what amazed him the most was that after Six years of filming his life, it all came down to 85minutes on film. Watching the film was a real journey for him into his past and how far he has come in his life. It was emotional watching it sitting next to him after all this time. I was so pleased he loved it. He received standing ovations at all the screenings during that festival and we led the audience award all week, eventually finishing as Runner Up out of 305 films. He now views the film as ‘his weapon’ for the work he continues to do.
What we always tried to do when filming in a community was to show the correct levels of respect by going directly to the village Chairmen to gain their trust and support. I spent a long time with characters and communities before I picked up a camera to start filming. This was vital in gaining peoples trust and giving them a greater understanding of what I was doing.
There were times when people would react badly to the camera, but the most frightening thing for people living with albinism is that stigma and discrimination is so often hidden. Josephat and Veda do not know who their enemy is.
It was never my plan to make a film over 6 years, but I think there are two reasons really, the first one being I didn’t have any money! For the first 4 years I largely self-funded the film through other jobs I was doing as a cameraman at the time. I would base myself in Tanzania and I would look for work in other African countries making films for International NGO’s working in neighboring countries. I would then use that money I earned to live and keep filming in Tanzania. This was a long process and at times a real struggle to keep going. Once the BBC and ITVS International came on board I was finally financially able to focus all my efforts on completing the film.
The second reason was that I started filming before the killings were reported and I did not know how the story would progress and unfold. As the murders begun to escalate it became very important to keep following their journey in the face of what was happening. Much of what I saw was horrific and what the characters have gone through in their life makes for a heavy watch, however I wanted to make a film that showed all these things but was equally empowering and positive. It had to capture the characters inner strength, their hope for a better future and there incredible dedication to validating their position within a society that rejects them. In order to capture these very personal journeys I wanted to give them the time and space to tell their stories and try my best to represent this subject in the correct way.
When I started making the film I knew I wanted to raise awareness for the issue, however I certainly didn’t know the film and it’s campaign would become such a big part of my life. Spending so much time as an imbedded filmmaker and living with my subjects for such a long time I witnessed first hand the stigma and daily struggle so many people with Albinism in Tanzania suffer. For most of the filming I worked alone, producing, shooting and editing the material. This intimate access was key in the making of this film, and in forging strong and lasting relationships with my subjects.
As I began filming before the killings were first reported I was the only one out there covering what was going on. It meant that I became actively involved with the cause. As mine and Josephats friendship developed so did our aspirations. Since the filming finished we are still working together – we are now running a new registered charity called, Standing Voice that is working to support and improve the lives of people with albinism in Tanzania and across Africa.
As Josesphat often says “I told Harry what I was doing, Harry told me what he was doing, and we decided then and there to travel together in one boat”.
There were so many. One of the most extraordinary moments in the film is a scene I filmed in Buhangija Albino camp that is now home to 148 children with albinism. I was filming an interview with two girls as they sat chatting in their dormitory. One of the girls, Kabula had lost her arm when it was viciously chopped off in an attack that took place in her own village. I wanted to avoid asking her questions about the attack, as she was so young, so I decided to leave the camera running as she and her friend, Ana sat chatting. After a while they became very relaxed and their conversation turned to who was responsible for the attack on Kabula. It materialised that Kabula felt it was her father who was responsible for the attack and spoke of how she will one day get her revenge on him. This ultimately made up one of the most powerful scenes in the film.
One of the funniest moments in the filming was when Josephat reached the summit of Mt Kilimanjaro and overwhelmed by his achievement and his long journey he broke down crying. Josephat very rarely cry’s, so this moment of emotion in relation to all he had been through was an important moment to capture. However I had also been on a long journey to make this film and got caught up in the emotion as well. As I became caught up in the moment while I was filming the scene I walked straight into the frame, also now crying and completely ruined the shot.
The responses from audiences so far have been extraordinary and people are really reaching out and asking how they can help after each screening. Myself and Josephat Torner have now set up a charity called Standing Voice. Standing Voice’s primary focus will be in improving the lives of people living with albinism in Tanzania and across Africa. You can find out more about the work we will be doing here www.standingvoice.org
This is a subject that audiences outside Africa know very little about. The film has been screenings at film festivals all over the world this year. We have had an incredible response from all audiences that have seen the film. After the first BBC broadcast Josephat and I received hundreds of emails from people wanting to know how they could help. The extraordinary global audience reaction we have seen has led to us raising staggering funds for the work Standing Voice is doing in Tanzania. I believe passionately that Documentary Films are extremely powerful and persuasive tools when raising awareness and instigating change.
My priority has always been to use the documentary as a tool to try and help change common misconceptions and beliefs about albinism in Africa. Over the next year an outreach team will travel to some of the most isolated and rural communities in East Africa, where discrimination and misguided beliefs about albinism are most prominent.
The outreach program will engage directly with the communities, religious leaders, policy makes and those held largely responsible for spreading beliefs that have triggered the reported murder and mutilation of over 100 people with albinism in Tanzania alone.
These screenings of the film will be followed by community discussions led by the films lead protagonist, Josephat Torner, alongside a number of influential members of the Tanzanian Albino Society. These talks will engage communities, create dialogue and answer questions surrounding albinism that are not commonly addressed in Tanzanian society.
During the discussions a team of specialist doctors will be on hand to educate and distribute information about the dangers of skin cancer and explain the basic science of albinism. Our outreach programme will represent a unique opportunity to distribute sunscreen and protective clothing to vast numbers of people with albinism in some of the most rural areas across Tanzania and wider East Africa. We will provide information on how to use sunscreen and how it can protect the skin when used correctly.
We plan to document the effect our outreach has on local East African communities and develop structured workshops to instigate direct communication and learning. As well as physically screening the film in towns and remote villages, its content will be facilitated through schools, charities, radio, photography and other outlets.
We are working with local organisations who provide projection screens and transport to make screening films in some of the most remote areas of East Africa possible. I believe educating communities about albinism is essential in combating discrimination and dispelling myths surrounding the condition.
The film is currently traveling to film festivals all over the world this year. The film will be available on DVD, I-tunes and Pop-up Cinema later this year.