Patricia Willocq and her photographic project called White Ebony recently achieved two highly recognised awards. The esteemed photographer won the One Eyeland Photographer of the Year 2015 award for her evocative shot of an albino baby cradled in his Mother’s hands – this is a gold medal achievement. Her photographic book White Ebony, that was published with the help of the Gertler Family Foundation (GFF), also attained a gold medal with the Gold Book of the Year 2015 award.
White Ebony – a study of albinism in the Democratic Republic of Congo (DRC)
White Ebony contains engaging and deeply moving photographs of a stigmatised minority living in the DRC – people suffering from albinism. These individuals lack pigment in their skin, making it extremely white or mostly white with dark spots where pigment is present on the skin. They also have unusually light hair and light green or blue eyes, which may even appear red when seen at different angles. In African countries like the DRC people mostly have dark brown skins and eyes, and black hair. Those with albinism are considered abnormal and are regularly shunned by society. Besides the rejection, they also usually have problems with their vision and a severe sensitivity to the sun – often resulting in skin cancer. The photographs in White Ebony are a stunning representation of albinos seen in a different, more positive, and more gentle light.
Promoting awareness of albinism
Patricia Willocq not only takes stunning and emotionally evocative shots, she also uses her talent to promote awareness of the plight of these unfortunate individuals. Born and raised in the DRC, the photographer has travelled around the world and has made several publications and won several awards. Her first photo of a person with albinism was published in the DRC in 2013. The photo achieved an Honourable Mention of UNICEF Photo of the Year award.
In a few days, albinism charity Under The Same Sun (UTSS) will host a Pan Africa Albinism Conference that will center on increasing awareness towards the difficulties PWA (people with albinism) are facing, and a better understanding towards their condition. The conference will be offered in three languages, English French, and Kiswahili, in order to reach as many people as possible. Many organizations will show their support by participating, including international organizations and PWA groups — and the Gertler Family Foundation (GFF) will also be taking part in the conference, represented by its Communication Manager, Mamie Kabongolo.
UTSS is a global organization dedicated to improving the wellbeing of people suffering from albinism, with an emphasis on the Tanzanian community. PWA often suffer from unjust discrimination and intolerance that can result in violence and even death. The UTSS hopes to relieve their sufferings by way of educating the public on albinism through peaceful advocacy, such as the first Pan Africa conference, which they will host on November 19-22.
The GFF has been actively supporting people suffering from albinism, specifically in the Democratic Republic of Congo (DRC). Notably, the “White Ebony” project, which GFF sponsors, focuses on increasing awareness and providing support to PWA. Additionally, the organization is helping 20 albino children in the DRC achieve education from primary school to university, by addressing their daily needs. GFF Communication Manager Mamie Kabongolo will take an active part in the upcoming conference, in a joint effort to promote a more understanding, respectful treatment of PWA.
Vodacom Best of the Best Star – Muyoli Christian
At the 2015 Vodacom ‘Best of the Best’ show, a young man with albinism made a great impression. Muyoli Christian from Bandundu in the Democratic Republic of the Congo (DRC) gave a sterling performance, that ended with a standing ovation by both the audience and the judges.
An unfortunate start
Muyoli Christian was born in the capital of the DRC, Kinshasa. His father Jean-Pierre Beteya and mother Mamie Kondo were simple folk and parents to four children, of which Muyoli was the eldest. The family was not well off financially and because of this the young man could not complete his high-school education. Muyoli was not only born into poverty, he was also born with albinism — a congenital disorder distinguished by the absence of skin and/or hair pigment in the person. People with albinism suffer from health conditions and are also widely discriminated against.
Born to sing
Despite having a very challenging start in life, the young performer’s spirits were not dampened. Since he was a very young boy Muyoli loved to sing at every opportunity. When he was around eight years old, the songster amazed his congregation with his beautiful singing voice. Once Muyoli was in his teens, he became part of a successful local band. The next step on his journey to becoming a star was to perform in front of a bigger audience. The Vodacom Best of the Best competition was the perfect opportunity to achieve this goal.
In the top three of Best of the Best
The young performer concluded a triumphant performance with a humble bow in front of a highly excited audience. Audience and judges alike were overwhelmed with Muyoli’s passionate, yet simple routine and his poignant voice. This combination landed young Muyoli Christian third place in the highly competitive competition, a well deserved recognition to his talent.
On June 13th, 2015 Patricia Willocq’s much anticipated book White Ebony will be published by Lammerhuber. Willocq’s ground breaking photo report is the result of a years of hard work and dedication to a cause that receives very little worldwide attention. The book celebrates the lives of people with albinism (PWA) in the Democratic Republic of Congo (DRC) and aims to increase their profile and raise awareness. Thanks to the backing of Fleurette and Gentler Family Foundation, Willcoq has been able to compile a collection of images that deliver a message of hope, acceptance and dignity for a community of marginalized people in the DRC.
White Ebony won an honorable mention at the Unicef Photo of the Year Awards in 2013 and has been exhibited by the Office of the United Nations High Commissioner for Human Rights.
Patricia Willocq was born in the Congo in 1980, she has dedicated her time to working with NGOs in support of human rights causes. The plight of PWA in the Democratic Republic of Congo and neighboring African nations is a harrowing one. They are often the subject of ritualistic killings or mutilations and some of the worst effects are being stigmatized and ostracized in the community, this is particularly telling for young children in school. Thanks to the work of individuals like Willocq and famous Congolese albino wrestler, Mwimba Texas, public awareness and acceptance is now improving.
Upcoming White Ebony exhibitions include the June 13th White Ebony exhibition in Brussels, the 09 – 30 October exhibition at the Maison de la Laïcité in La Louvière, Belgium and finally the
13 November – 11 December exhibition at la Maison du Hainaut, Charleroi.
White Ebony will be available in all large libraries around the world and pre- orders are available online direct through Lammerhuber.
Albinism is a condition that results in a lack of pigmentation to their hair, skin and eyes. It’s a non-contagious genetic condition that a child inherits through one abnormal gene from each parent. Because these genes are recessive, most parents of children with the condition have normal skin color or pigmentation. Two parents that carry the gene have a 25% chance of bearing a child with Albinism and a 50% chance that their child will be a carrier. Approximately one person in 17,000 has some form of the condition, and the signs can vary from very mild to strong. Albinism is something that affects people all over the world, across every ethnic group, and it’s also found in the animal kingdom.
What are the effects of Albinism?
In general, people with Albinism tend to be healthy and lead normal lives in many of ways. However the main issues that the condition can cause are defective vision and high susceptibility to sunburn and skin cancer, due to the lack of skin pigmentation. This is a lifelong condition that doesn’t worsen or improve over time, so treatment from an early age usually involves glasses for near or far sightedness and reduced exposure to light. Other measures include wearing hats and long clothing and using sunscreen to cover or protect the skin at all times.
Attitudes to albinism in Africa
Negative attitudes towards people with albinism (PWA) is a problem that appears to be worsening in Africa. Some consider having a child with Albinism good luck, and embrace it, while others consider it a curse and can actually abandon their child. Across Africa, there are dangerous superstitious beliefs about PWA having magical powers. Witch doctors have propagated these myths, and some use body parts from people with the condition for ‘medicine’ — while routine killings and dismemberings have occurred due to a range of public misconceptions.
At schools, many PWA are ostracized because they cannot play outside and are often sat at the back of the class, where they cannot see the lesson clearly and their learning can suffer as a direct result.
To summarize, while children and adults with Albinism are susceptible to some physical vulnerabilities, it can be argued that in places like Africa the main challenge they face is social prejudice and appearance-based discrimination.