People with albinism across Africa face social exclusion and suspicion. Ogbogene Emomoboye Joy hopes to bring greater understanding through Awareness and Enlightenment in Her Native Nigeria, where People with the genetic condition are Discriminated Against Rampantly and Obstreperously.
ALBINISM IN BAYELSA STATE OF NIGERIA: CHALLENGE AND THE WAY FORWARD. By Ogbogene Emomoboye Joy
Albinism is a genetic condition where there is lack or complete absence melanin in the skin, hair and/or eyes of a person. This absence of melanin makes the skin vulnerable to the harmful Ultraviolet (UV) rays of the sun which leads to skin cancer. Thus, one of the major and common health risk of Persons With Albinism (PWA) is skin cancer.
Like in every other states and even countries, PWA in Bayelsa State (a relatively small state in the South-South region of Nigeria), are faced with the same health challenges and discrimination from the society. However, the case and fate of PWA in Bayelsa State is quite more alarming.
CHALLENGES OF PERSONS WITH ALBINISM IN BAYELSA STATE.
1. SKIN CANCER: When you talk of Albinism, the first challenge that comes to mind is the risk of skin cancer. As explained earlier, the lack or complete absence of melanin exposes the albinism skin to harmful Ultraviolet rays from the direct sun. This in most times lead skin cancer. In 2024, the Bayelsa State Chapter of the Albinism Association of Nigeria (AAN) lost two of our members to skin cancer. This figure could be higher because we sometimes hear death of PWA in remote areas of the state; but because they ware not identified with AAN, the association finds it difficult to give account of them.
2. SOCIAL DISCRIMINATIONS: PWA in Nigeria especially in Bayelsa State are seriously discriminated against in the society. This discrimination even begins from the family level. There are cases where parents are not proud of their child with albinism. Some parents even go as far as hiding or not counting their child with albinism as one of theirs before the public. The resultant effect is the child grows with an inferiority complex believing he/she is less of a person because of his/her skin colour.
3. LOW SELF ESTEEM: The direct resultant effect of social discrimination is inferiority complex and low self esteem of the affected PWA. This is a prevailing and very worrisome trend in Bayelsa State. Majority of PWA in the state believes they are less of a human. They are largely withdrawn, mostly accept and live a life far below their true potentials. It is more common among the females who erroneously believe they can’t get reasonable men as suitors. This makes them easily available to cheap irresponsible men who sees female PWA as easy prey to quench their sexual desires. They impregnate them, abandon and allow them carter for the children. Thank to the Albinism Association of Nigeria Bayelsa State Chapter who has enlightened and encouraged our members to come out of their shells and live a higher life but there is still more to be done especially reaching out to PWA in remote riverine areas who are still neck deep in ignorance about the albinism skin.
4. LACK OF AWARENESS ABOUT ALBINISM: Most persons including parents and even adult PWA knows little or nothing about the albinism skin and how to maintain it. This is very evident in the way they react or deal wit PWA. Most people make jest or even frown when they see PWA moving with umbrella under hot sun. Children and even adult PWA are seen hawking and working under hot sun with no form of protective gears to protect their skin. Thanks to the Albinism Association which has been enlightening parents and PWA on the danger of exposing the albinism skin to direct sunlight; but how far can this awareness go when there is very little or no support (especially from the government) in pushing course.
5. LACK OF GOVERNMENT SUPPORT: The lack of government support to the albinism community in Bayelsa State is really worrisome. It is worthy to state that the Bayelsa State Chapter of the Albinism Association of Nigeria has applied countless number of times directly to the Governor, Deputy Governor and through the Ministry of Women, Children Affairs and Social Development (which is the government ministry we fall into) to support our albinism awareness programmes but not a single approval has been given. It is also worthy to note that there is no single person with albinism (known to the association) in the state civil service employment. Most worrisome is the government appointment of Special Assistants and Senior Special Assistants to the Governor on Disabilities in September 2024. Over 30 appointments on Disabilities were given to persons with disabilities but not a single person with albinism was given. Several letters of appeals were written informing the government that albinism is one of the five clusters of the disability community. Several high ranking members of the government were visited. Peaceful protests were even made but all to no avail. This leaves us with the question, if the government is this cold and unreceptive to PWA, what is our fate?
THE WAY FORWARD
1. INCREASED AWARENESS: There should be increased awareness about albinism and it’s associated challenges. Enough awareness should be raised to enlighten the people that albinism is a genetic condition and not a curse. Parents and relatives of PWA should be proud of them just as any other child. Enough awareness will reduce social discrimination which will inturn improve the self esteem of PWA.
2. IMPROVED ACCESS TO HEALTHCARE: An accessable and sustained health care scheme either from the government or private sector should be made available to PWA. This should include free diagnosis, periodic skin test and treatment of PWA confirmed of skin cancer. This is very important as it will reduce avoidable deaths of PWA.
3. SUPPORT FOR PWA: The albinism community seriously needs help. Majority of PWA live below the poverty line and this is why many still hawk and do menial jobs under hot sun just a eke out a living. Support can come inform of skill acquisitions, employments, training and helping PWA start up businesses. Support is also needed to create awareness and help reaching out to PWA in remote riverine villages who are ignorant about their skin. Support The Albinism Association of Nigeria Bayelsa State Chapter to help amplify the voices of PWA in advocating for our rights and for better lives.
We will be carrying out awareness programs on being sun smart in the Riverine areas as we are entering the dry season.
We also require Financial assistance to carry out our lined up awareness activities for 2025 and we hope good spirited individuals and donors will respond to our plea.
Donations can be made to :
Mrs Ogbogene Emomoboye Joy
Chairperson Albinism Association of Nigeria Bayelsa State Chapter
Phone: 00234-813-8821801