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.
In 2014 the Gertler Family Foundation (GFF) answered an appeal made by the Mwimba Texas Foundation and made a commitment to help albino children achieve a decent education. The initiative was launched with a project that involves sponsoring the education of 20 children with Albinism. As with many of the GFF’s other ongoing projects, this was not a one-off gesture of goodwill. The Foundation pledged to continue sponsoring the children from the time that they start pre-school until when they reach adulthood and complete their university education. In addition to settling the annual school fees, the Gertler Family Foundation also takes care of some of the required supplies that any child needs and deserves for school.
A branch of the White Ebony project
This education initiative forms part of a larger GFF-supported project in aid of albinos, called White Ebony. From the time it was founded in 1998, the White Ebony project has been striving to improve the lives of people with albinism. Through this collaboration with Mwimba Texas, many of the objectives of White Ebony can be achieved.
The project’s widely covered celebration event took place on Friday 4 September 2015 in Kinshasa, and attended by top representatives of the program as well as approximately 500 individuals from the albino community. Well-known figures included the albino singer Christian Muyoli, a representative of the Kinshasa governor, and the albino activist Yan Mambo. The Mwimba Texas Foundation handed the school supplies to the project’s beneficiaries during the ceremony. Spokesperson of the Gertler Family Foundation, Mamie Kongolo, highlighted the organization’s commitment to ongoing support for the cause, and explained that donating a considerable volume of school supplies relieved parents of pressure and enabled children to start off their school year on a positive note.
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.
L’albinisme est une anomalie qui résulte d’un déficit de pigmentation des cheveux, de la peau et des yeux. Il s’agit d’une anomalie génétique non contagieuse qui se transmet à l’enfant par le biais des gènes anormaux de ses deux parents. Ces gènes étant récessifs, la plupart des parents d’enfants atteints d’albinisme ont une couleur de peau ou une pigmentation normale. Deux parents porteurs du gène ont 25% de chances de concevoir un enfant atteint d’albinisme et 50% de chances d’avoir un enfant porteur du gène . Une personne sur 17 000 environ est atteinte d’une forme d’albinisme et les symptômes varient des plus légers aux plus prononcés. On trouve des personnes atteintes d’albinisme partout dans le monde, quel que soit le groupe ethnique concerné et l’albinisme existe également chez les animaux.
Quels sont les conséquences de l’albinisme ?
Les personnes atteintes d’albinisme sont généralement en bonne santé et mènent une vie normale à de nombreux égards. Cependant, l’albinisme peut être à l’origine de problèmes de vue et d’une hypersensibilité face aux risques de coups de soleil et de cancer de la peau, en raison du déficit de pigmentation de la peau. Il s’agit d’une anomalie permanente qui ne connaît ni aggravation ni amélioration au fil du temps, le traitement consiste donc dès l’enfance à porter des lunettes pour corriger la myopie, l’astigmatisme ou l’hypermétropie et à limiter l’exposition au soleil. Les mesures de prévention comprennent également le port de chapeaux et de vêtements longs et le recours à l’écran solaire pour couvrir ou protéger la peau en permanence.
Perception de l’albinisme en Afrique
Le problème des attitudes négatives à l’encontre des personnes atteintes d’albinisme semble être en voie d’aggravation en Afrique. Certains considèrent le fait d’avoir un enfant atteint d’albinisme comme un signe de chance et l’acceptent, d’autres en revanche voient cela comme une malédiction et peuvent même abandonner leur enfant. Il existe en Afrique de dangereuses croyances superstitieuses à propos des pouvoirs magiques des personnes atteintes d’albinisme. Des sorciers guérisseurs ont propagé ces mythes et certains utilisent des parties du corps de personnes atteintes à des fins ‘médicales’ – les tueries et les mutilations deviennent routinières en raison d’une série d’idées fausses ancrées dans les esprits.
Dans les écoles, de nombreux élèves atteints d’albinisme sont ostracisés parce qu’ils ne peuvent jouer dehors et sont souvent assis au fond de la classe, d’où ils ne peuvent pas voir correctement, ce qui peut pénaliser leur scolarité.
En résumé, bien que les enfants et les adultes atteints d’albinisme souffrent de certaines fragilités physiologiques, on peut avancer que dans certaines régions du monde comme en Afrique, le principal défi auquel ils sont confrontés est celui des préjugés sociaux et de la discrimination fondée sur l’apparence.
The plight of people with albinism in Africa is well documented, with hardship and discrimination at its core. Sadly those with the condition are at risk of alienation, prejudice and ritualistic killings due to superstitious beliefs and poor education of the communities in which they live. For people with albinism in the Democratic Republic Congo (DRC) conditions are improving, albeit slowly. Special interest groups and individuals are joining the cause to raise the profile of these marginalized people and to enrich their lives.
The “White Ebony” (Blanc Ebene) project was created in 1998 to help people with albinism in the DRC. Founded by the famous Congolese wrestler Mwimba Makiese Alphonse Texas, this project is a shining light for Congolese albinos.
The profile of the project was raised considerably by the work of the famous Belgian photographer Patricia Willocq, and with the financial backing of organizations like the Gertler Family Foundation (GFF). What initially started as a fascination for Wilcoq has now translated into a passion. Her photographic series “White Ebony” received an honorable mention at the Unicef Photo of the Year Awards, and has been exhibited and published worldwide.
The GFF contributed $87,000 to the cause and thanks to this funding and the work of people like Willocq, the project has gained additional traction and has expanded to include the initiatives “White Ebony: A Vision for All” and “White Ebony: Raise up Albino Women”:
* “White Ebony: A Vision for All” aims to increase equality for school children with albinism suffering from poor eyesight and neglect at school. Already 150 children have had their eyes screened and many provided grants to attend school.
* “White Ebony: Raise up Albino Women” aims to help albino women through development of their professional skills, empowering them to earn money, live a better life and provide for their family.
It’s an exciting project that has captured widespread public attention. The hope is that through the continued efforts of people like Mwimba Texas, Patricia Wilcoq and the Gertler Family Foundation, White Ebony will continue to enrich the lives of people with albinism in the DRC.
In Africa, the life for people with albinism (PWA) has become a terrifying prospect in many countries. Particularly in East African nations, such as Tanzania and Burundi, sad misconceptions and superstitious beliefs propagated by witch doctors and an uneducated population has led to widespread persecution. Regular killings or mutilations are occurring based on superstitions about bad luck that these people bring or mythical powers they have.
A Change of Heart in the Democratic Republic of Congo (DRC)
In the DRC attitudes are changing though. Thanks to the work of NGOs and a range of special interest groups and individuals, people with albinism are being widely integrated into society and accepted rather than persecuted. 1 out of every 4000 Africans is born with albinism so the effect of this cultural shift in the DRC has been huge for families.
Persecution towards albinism has taken many forms in the past. Aside from killings, the most common and damaging effects have been isolation, a miseducated public, children dropping out of school early, and skin cancer.
Mwimba Texas has become an icon for people with albinism in the DRC. Sport is often a powerful tool in breaking down barriers and, as a wrestler with albinism, Texas is changing the perception of the condition in his native country. He speaks from the heart about albinism, and is helping to raise awareness about the issues associated with it by reaching out to the community through his sport.
Some of the greatest threats to people with albinism are the simplest: skin cancer and barriers to education. Although change is slow, the DRC is leading the way in educating the public through community initiatives, teaching families how to prevent skin cancer and increasing access to essential services to treat poor vision. The flow on effects to the classroom are important. Children with albinism need to sit at the front of the class and be included, not ostracized.
These changes are not things that can happen overnight, however through the concentrated efforts of a few, the seeds of change have now been sewn in the DRC. We just need to wait for the fruits to grow.