The diverse colours of our life as albinos

What is life like for albinos? Daily Trust on Sunday spoke to some albinos on albinism, a condition which occurs when the body cannot produce a natural substance called ‘melanin’.  Without melanin, there will be little or no colour (pigment) in the skin, hair, and eyes. For 35-year-old Donald Tampi, life as an albino is […]

What is life like for albinos? Daily Trust on Sunday spoke to some albinos on albinism, a condition which occurs when the body cannot produce a natural substance called ‘melanin’.  Without melanin, there will be little or no colour (pigment) in the skin, hair, and eyes.

For 35-year-old Donald Tampi, life as an albino is filled with discriminations as a lot of people taunt and call them names they don’t like. They feel embarrassed about those names, especially when albinos are taunted in public.
 “Once you appear in the midst of people and your skin is different from theirs, they make you feel embarrassed,” he said.
He said while he had not been personally discriminated against while searching for and securing a job, he knew many who could not secure jobs because they are albinos.
“There is a friend of mine who is also an albino. He told me that when he went for an interview, he passed the given test, but he was told that because he is an albino, the organisation could not give him that job,” said Tampi.  “He was told that as an albino he suffered from visual impairment and other possible health challenges. My friend was embarrassed. He just walked out of the place.”
The embarrassment albinos are subjected to took a deadly turn recently in the story of a 23-year-old man in Lagos, Ugochukwu  Ekwe, who committed suicide because he was an albino.
Asked what could be done to stop the discrimination of albinos and improve on their living conditions,   Tampi said a lot of awareness should be created on how albinos should be regarded in the society, and their health challenges should be properly tackled.
He said this should include funding their treatments and skin cancer projects, adding that in 2007 the federal government  promised to designate hospitals in the six geopolitical zones to treat albinos with skin cancers,  but till date, it is only at the National Hospital,  Abuja that albinos with skin cancer access free cancer treatment. He said albinos were appealing to the federal government to assist in making other hospitals do the same.
On the albino who committed suicide, he said it was frustration that must have driven him to take such an extreme measure, and that is why government should create more awareness so that albinos could be recognized in the society.
Blessing Ugwuamaju is a 26-year-old albino. She said the major problem she faced as an albino is the pains from skin cancer. The shy Blessing said while she is worried about the ailment and would want to be free from it, there is nothing anyone would say  or do to her that would make her commit suicide. She said, “I will retaliate whatever is done or said to me.”
Afam Kasim is 52-year-old. He said he is proud of himself as a person with albinism and if there is anything like coming back to the world again, he would want to return as an albino as it has given him a lot of opportunities.
He said he could walk into any office and carry out whatever transactions because he works with the Albino Foundation.  Albinism has given him opportunity to sit with top government officials,  ministers, presidents of the country and other countries.
Kasim said albinos face discrimination and stigmatization from their families and society. “I often tell my fellow albinos that discrimination starts from oneself because if you begin to see yourself differently from other human beings you discriminate yourself first before others do it to you. I have seen families who tell their albino children they will amount to nothing; or you will never get married; which woman or man will marry you?” he said.
While saying he is married with five beautiful children, Kasim added that  many teachers were unaware that albinos should sit in the front row of the class because of their short-sightedness.  Putting them in the back row creates problems for them. “Our society needs re-orientation on albinos, and other persons with disabilities. For instance, albinos are susceptible to skin cancer because of the sun, and not salt, as some families wrongly believe.
Kasim said though the government had been trying, only little over 800 of their members in Nigeria had been treated for skin cancer at the National Hospital. Sadly, according to him some have died because of the lack of access to medical care.  He urged government to   allocate funds to other teaching hospitals to treat albinos because the National Hospital is over-stretched.
He said the challenges of albinos in schools should also be addressed. “If the enabling environment is given to them, they can be what they want to be in life. So, teachers and school authorities, too, should help them.”
Oluchi Iwuoha, a female albino said if women faced discrimination based on gender, it is worse for a woman that is an albino.
Jake Epelle is the founder of The Albino Foundation in Abuja, Nigeria and he is 54 years old. He said he has no regrets being an albino and that he is positive about life because he knows he is created for a purpose. He added that and he was coping with the challenges associated with being an albino.
According to Epelle, as albinos, everyone one of them had health problems, but the most crucial  of their predicaments  is discrimination. He said, “The issue of discrimination, stigma, social exclusion, stereotypes, myths, superstitious beliefs, taunting and name-calling are disturbing. The way and manner they talk to  albinos give us the impression that others consider us to be  inanimate objects. The resultant effect are low self-esteem, lack of confidence , withdrawal attitudes and often times threat to life or suicidal tendencies as was the case of Ugochukwu recently,” he said.
Epelle said the second major problem is being prone to skin cancer, sunburn and struggling with one’s sight, which is a form of embarrassment. There is also the lack of adequate protective gear that could help to shield albinos from the sun, saying “no person with albinism was born with freckles;  it is as a result of undue exposure to the sun. So the sun is the chief enemy to the sun.”
He said the third major problem of albinos is lack of education because they can’t see the blackboard saying 89 per cent are not educated and so are very poor, and that about 90 per cent of albinos cannot use the computer.
According to him, another challenge is the exclusion of albinos from policy and legislation. Albinos are not mainstreamed into many government programmes and projects because of ignorance and the lack of political will.
He said another is lack of economic empowerment because families are not ready to send them to school.
He added that many female albinos are struggling with relationships, and sometimes people who muster courage come out of pity and even then they face pressure like, “is this the kind of thing you want to marry?”
Asked if the factors predispose them to suicide, he said “everybody has different levels of endurance. There are people who cannot endure consistent battery psychologically. I am in touch with the mother of the late Ugochukwu.  The police are carrying out an investigation into the suicide story.”
Epelle said the foundation would support the investigation into the case, as “it has become a national issue. The United Nations has asked me to file a report on the case.”
He said while, as a Foundation, they condemn the suicide act, they wouldn’t blame the young man as he must have carried out the act as a result of societal pressures. He said, however, that  suicide should not have been an option because people should not run away from their problems, and Ugochukwu’s  case of albinism was not an extreme one.
Epelle added that  Ugochukwu’s family members should have sought help when they knew he had made other previous suicide attempts, adding that  no member of his Foundation would commit suicide because they had been tutored with relevant information on how to handle societal pressures. They have been told to overlook discrimination or possibly use humour to over challenges.
“Anyone who discriminates against you is the one with the problem, because he or she is ignorant and lacks social skills to cope with what he or she doesn’t like. A man once walked up to me and called me ‘unfortunate European’ when I alighted from the plane from my trip to Amsterdam, and I told him ‘I came out of business class and you came out from economy, so who is more unfortunate?’”
On the way forward, he said the society should be properly educated, like overhauling the way people think and behave towards albinos and other vulnerable groups who are not like them.
Others include government needs to sit with albinos or organization they can trust and find out what albinos really need.  Thirdly albinos themselves need to be well-informed. Epelle said he was almost 40 years old before he knew he was an albino. Hitherto,  he only thought he was different.
“Everyone with albinism should seek education. He should know that he is not on earth as a puppet but for a purpose. He has to look for an organizations like ours that gives information and psychological support , because  when you are successful no can look down on you,” he advised.