ALBINISM: BREAKING THE WALLS BUILDING THE BRIDGES.
Albinisms in Africa are often victims of segregation, stigmatization and discrimination fuelled by cultural beliefs and misconceptions, most disturbing of that are “the socio-economic problems and disadvantages they face as a result of these negative societal tendencies and attitudes towards them.
Albino children in Africa are mutilated and murdered for their body parts — parts sold to those who practice a strange religious tradition, a tradition based on the erroneous and horrific belief that albino body parts hold strong, magical powers.
Rampant in country like Burundi, Tanzania, Rwanda and not forgotten Nigeria making lives of African albinos exceptionally challenging.
Albinos over the years have suffered discrimination, stigmatisation, health hazards, impaired vision, economic deprivation, lack of access to quality education, among others.
In Tanzania — Albinism occurs at rates as high as 1 in 3,000 births — people have been slaughtered by witch doctors for their organs, used in magic potions. Rapes also have been reported in Zimbabwe, where many believe that having sexual intercourse with a person with albinism can cure HIV/AIDS.
Nigeria was estimated to have one of the highest albinism prevalence rates in the world with children constituting 40 per cent.
Even in the United States, children of all races with albinism face ignorance and discrimination because of their unusual colouring.
Albinism crosses all races, discrimination is not limited to random jeering, When bleached-out kids are born to an African-American families, out of ignorance, a question of lineage are being raised — ‘that isn’t my baby,'” Extreme cases of rejection even from infancy.
Albinism is a “genetic dice game,” Neither of parents nor siblings not have the trait is a genetic deficiency of melanin pigment production. They are
increasingly referred to as “people with albinism,” portrayed in circus sideshows as oddities associated with superstition and magical powers.
Production is rarely totally absent but perhaps 1-10% of normal. It is usually inherited as an autosomal recessive condition but some forms are X-linked.
About 1 in 70 people carry a gene for oculocutaneous albinism. Albinism can affect all races and has been extensively studied in other species like the mouse.
The courage needed to fight against this tragedy may be found in actions like those taken by Dr. Jake Apelle who in 2006 started Nigerian Albino Foundation to campaign on issues that concern albinos and bring the world’s attention to African ancient and barbaric tradition –Albinism stigmazation, ritualism and victimization and healthy measures regarding risks of skin cancer from exposure to unkind climatic conditions
Dr. Jake Epelle is the National President and founder of the Nigerian Albino Foundation, organisation instrumental in persuading the Nigerian government to pay for medical treatment for more than 500 albinos who have suffered from skin cancers in the sun-scorched African nation.
The foundation has put a special focus on raising awareness among schoolteachers as concerned children
making teachers realize in keeping them in, requires being aware of their visual needs, such as seating them at the front of the classroom and giving them, and other visually-impaired children, extra time to complete exams. Braille is unnecessary as they can read the dots visually and can function perfectly in a mainstream classroom environment within educational plan that gives specific attention to their special visual needs and those with nystagmus, eye muscle surgery can reduce the movement of the eyes. Recent advances include contact lenses with a special iris tint and clear pupil area and bi-level telemicroscopes fitted on to patients’ prescription spectacles.
In National Enquirer chat with Abuja based eyes specialist Dr. Umudi, said “If you limit highly functioning kids and put them in with kids who are much more visually impaired, it lowers the horizon and bar for where they can go”
Stressed further” In some cases due to their optic nerve connections are misrouted in the brain does not see life in “detail”.
Given proper support, children with albinism can function very well, despite considerable visual handicap, and have a normal lifespan.
On interview with National Enquirer reporter, Abuja Skin specialist, Dr. Johnson quoted, “Skin cancer is the highest health risk that albinos face because of their delicate skin type, especially when exposed to the sun,’
A major health concern for the people with albinism especially in tropical climates like Nigeria is skin cancer, because of lack of pigment in their skin, people with albinism burn easily and frequently in the sun.
People with albinism are very susceptible to burning and subsequent skin malignancies. High-factor sun protection cream and avoidance of sunlight are essential.
A year after forming the Organisation through his efforts, the Federal Government approved free skin cancer prevention and treatment project with the National Hospital, Abuja.
The foundation submitted a summary of a blueprint, that detailed information on albinism, for awareness creation, policy formation and implementation with objectives to sensitize governments, policy planners, teachers and communities on the challenges of albinism to President Goodluck Jonathan-led past government but was thwarted due to change of power. Now, action plan on its implementation are expected from present government under President Muhammadu Buhari watch, the baton has been passed on to take a swipe on its implementation.
This is the first organization in the world to get the attention of the United Nations, securing 35 scholarships for members through UNICEF educational scheme.
The Albino Foundation launched a special education grant christened ‘TAF Back-To-School Education Grant Project’ to encourage less privileged children with albinism to have access to quality education in the country.
Born 5th May 1961, grew up in a fairly large and average polygamous family not knowing that he was born with albinism but strides to succeed in all my endeavors and is winning. Despite suffering the same fate children born albino Infancy.
“Every time there is a story about albinism, they are a victim.”
He was an Albinism living template. His experience has been his driving force. In embarking on sole journey of pulling all the walls and building bridges on colour in diversity but one race.
“I sensed a strong urge to passionately embark upon an aggressive advocacy campaign with enormous zeal to correct the negative impacts of several years of discrimination and stigmatization”.
Albino Foundation is the key driver of the albinism education in Nigeria, deserves commendation for unrelenting efforts at drawing much needed attention nationally and globally on the plight of persons with albinism
Much are still needed to be done, we do not leave all to this vibrant and ever- goals chasing young man, Dr. Eppelle, Federal Government need to create more elaborate awareness on the rights of Albinos and include albinism in government programmes, policies and projects.
In Liberia, albinos are discovering that there is strength in numbers and have formed their own advocacy group and pushing for their full fundamental rights and gaining grounds.
UN has every year is set aside June 13 every year as global Albinism Awareness Day to create both national and global awareness on the human rights of persons with albinism.
In more modern times, several notable musicians put a positive face on albinism: blues guitarists Johnny and Edgar Winter and Jamaican reggae singer Winston “King Yellow-man” Foster. Before his local success and U.S. breakthrough in early 1980s, Foster had been shunned as cursed and sent to live in an orphanage.
Despite the huge number of Nigerians living with albinism who are at risk of not only psychological socio-economic issues but health challenges, the government and stakeholders have continued to pay lip service to tackling these prevalent issues.
We can no more closed our eyes while some albinism persons continues loosing jobs or refused jobs not lack of creditentialism, competencies but mere fact ; albino. In some areas people boo them while legitimately walking on the road. All these are stigmatisation and the government should put asterisk stringent. Federal government and legislative arm of government in Nigeria should seat down, deliberate on sponsoring parliamentary bills that will formulate policies that will adequately capture the needs of average Albinos, protect the rights for protection, work and live freely in midst of their race.
A mapped out strategic and robust plan of action to foster lasting solutions to issues affecting the rights of albinos and other persons with disabilities or vulnerable groups in Nigeria.
Imagery sponsored movies using Albino models even on fashion shows and billboard can be used as a vehicle for overcoming the demoralizing myths of albinism — prejudice that arises from the same ignorance about all human differences.
On monitored interview, Dr. Eppele affirmed,
“Looking back, after nine years of hard work, commitment and determination to see attitudinal change within society, focused policy drive and mainstreaming of albinism into various Government programmes and projects, I can beat my chest and say that this present and future generations of people with albinism will never be the same again.”
As what future holds for Albinism and goal sustainability, He prophesises, “I see a bright future for this and future generations of people with albinism thanks to the steps the UN systems are taking to support the albinism cause. While I pledge to continue the fight for better future of all people with albinism”.
Went further to stressed, “With God on my side, little education and less than an average income and no hands-on experience in social sector, I launched the foundation whose vision is “a society with equal opportunities for persons with albinism.”
The unfolding story of albinism in Nigeria cannot be told without highlighting the pivotal role being played by the foundation under the ever-pushing Dr. Jake Epelle
Epelle, successes had solidify a lot of other Albinism organizations in Africa, Albinism foundation seems to have taken the status of mother-ship of all Albinism groups Africa..
Albinism is not a curse but a skin condition owing to the lack of melanin pigments and urged Nigerians to treat albinos with respect.
Albinism is a metaphor for all differences, we are the same and we are all different in our sameness.