Saturday, February 24, 2018


My struggle with Albinsm


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MEET Ikponwosa 'I.K' Ero, researcher and advocacy officer at Under the Same Sun (UTSS), a Canadian non-governmental organisation which campaigns for the rights of persons living with albinism. She has agreed to share her life story as someone who lives with albinism (PWAs). She hopes that in the few minutes it takes to read this article many will be spurred on to learn the truth about albinism and about the challenges persons with this medical condition face on a daily basis.

Albinism is the defect of melanin production that results in little or no colour (pigment) in the skin, hair and eyes. All too often persons with albinism are teased and made fun of because of their appearance, others such as in sub-saharan Africa suffer worse fates—mutilation and in some cases death. Last month, I.K travelled from Canada to the East African nation of Tanzania to meet UTSS's newest beneficiary of their Education Scholarship Fund, 14-year-old Adam. Their meeting could best be described as bitter-sweet. Just months earlier, Adam had endured and lived to tell of an assault so brutal, that it's a wonder he even survived. Tanzania is home to Mount Kilimanjaro, interestingly it also has the largest population of persons with albinism in the world, one in 2,000 Tanzanians are affected. However the country is said to be the worse place to be born with albinism.

The day that robbed this young boy of his innocence came in the month of October last year, when some guests were invited to the family's home in Tanzania's Mwanza region. Adam complained to his step-mother and father that one of the guests, a man, was following him around the house, but they brushed away his concerns. Then in an instant, the man wielded a machete and began his attack on Adam, slicing off three fingers on his right hand and severely injuring the boy's left hand. The terrified boy screamed for help, but his relatives didn't come to his assistance. It was either fight back or be killed, Adam thought. In an act of desperation, Adam bit the man's genitals and fled the bloody scene. He was rushed to the hospital. It was later determined that his own father and step-mother had conspired to have him killed and his body parts sold.

Adam almost lost his life because of the perverted lies and myths fuelled by witchdoctors who say that body parts of persons with albinism bring good luck, can cure an illness or help a politician get elected. Between 2007 and 2009, there was an average of three killings every month in Tanzania prompting the country's president to speak out against the persecution and killings of PWAs. The financial incentive is strong, the arm of a PWA can fetch as much as US$2,000. The latest killing of a PWA was reported on May 26 when the body of an unidentified man with albinism was found mutilated.

Meeting people who have been through harrowing experiences like Adam is never easy for I.K. At UTSS' offices she sorts through dozens of pictures which show the mutilated bodies of persons with albinism. She shudders to think that had her life taken a slightly different turn she may have shared a similar fate.

I.K was born and spent her childhood in Nigeria. Her parents named her Ikponwosa meaning thank God (for this child) in the Bini language. She may not have been physically attacked growing up, but I.K endured ridicule that cut just as sharp as knives. She remembers all too well, sitting in a classroom and not being able to see the board because of her poor vision, and not having anyone to give her the support she needed. She recalls that a girl sitting next to her would write the exam question for her and I.K in return would write the answer for the girl.

"Life was hard for several reasons. First of all you stand out more so it's very easy to get picked on. I'll be walking down the street and somebody yells out "Aafin!" (a derogatory word for albino). Nigeria is a very densely populated country with 165 million people so you can imagine every few feet people yell out all sorts of names at you so name calling was a big difficulty, there was also a lot of superstition, explains I.K.

"So growing up, I was watching a wall slowly rise from society, blocking me out. It was very scary for my parents but thankfully they realised this quickly and worked very hard to get me out of the country because they knew as I grew older that this wall would just grow. It was a difficult barrier in terms of employment and in terms of being socially accepted. Don't get me wrong, there are many persons with albinism in Nigeria that have done well but the vast majority are poor and suffer at every level."

In her late teens, I.K left Nigeria for Canada. In the sea of pale, white faces, she found it easy to camouflage. But soon she encountered obstacles. Many Canadians had never seen a person of African descent with albinism. She couldn't escape the shock that would register on people's faces when they saw her. But in Canada, she received the support she needed. Gone were the days when someone in class had to write the exam question for her, while at university in Canada, I.K received her exam papers in large print.

Aside from being stigmatised because of their condition, PWAs must also contend with physical challenges. Melanin plays a role in the development of certain optical nerves, because albinism results in little or no production of melanin, PWAs suffer with severe visual impairment. I.K is legally blind, her vision is 20/200, this means she can read at 20 feet what people with 'normal' vision can read at 200 feet. Because her eyes cannot filter light, she must wear sunglasses once outdoors, otherwise the glare hurts her eyes. Persons with albinism also stand a high chance of getting skin cancer. Most people with albinism in sub-saharan Africa die between the ages of 30-40 because of skin cancer, says I.K. She makes sure to block excess sunlight from entering her bedroom and she must put on sunscreen every day; even on cloudy days she can get burned.

She has never used any of these challenges as an excuse to back down from pursuing her goals. I.K is a recent graduate of law school and is currently 'articling'—a requirement she must fulfill in order to practise law in Canada. Despite the shame that society oftentimes inflicts upon them, says I.K, it's important that persons with albinism are reminded that they can do great things with their lives and nothing should stand in their way. She says she has never been prepared to reduce or sacrifice her dignity just for the sake of fitting in with others. Not to be underestimated is the power of education. I.K has developed a lot of advocacy programmes for UTSS.

"Most of us know the saying that 'Knowledge is power.' This is especially true here. The more we know about albinism, the more power we have to end discrimination against people living with it," says I.K.

But what about Adam who narrowly escaped death? Though traumatised and scarred for life, there are bright days ahead for the young boy. In just a couple of weeks, he will arrive in Canada where doctors are standing by to give him further medical attention but as a new member of the UTSS Education Scholarship Fund, Adam and 300 other children who are all part of the ESF now have the opportunity to access higher education.

Not everyone is that fortunate.

A Kenyan doctor Dr Pius Kamau, wrote of an experience he had while at the airport in Nairobi, Kenya. In April this year, he noticed a little boy with albinism in the company of three larger men who wore intimidating expressions. They came from Tanzania and were in transit to Burkina Faso. He observed that the boy appeared drugged. The men must have raised alarm bells because they were seen arguing with a representative from Kenya Airways who questioned why the boy did not have a passport. To Kamau's amazement and horror, the airline allowed the child to travel with the men without a single travel document.

Kamau, I.K and others would spend the rest of their lives wondering about that little boy's fate. His story emphasises to I.K how much work needs to be done in exposing the lies about albinism and bringing to attention the persecution, mutilation of PWAs and the trafficking and sale of their body parts.

Now more than ever before, knowledge can be gained at the click of a button, the webpage resources is a great place to learn more about albinism.

If people knew even half the truth about albinism, says I.K, the bulk of discrimination against persons with albinism would become history.

Says I.K, "A famous Judge in Canada, Judge Rosalie Abellaonce said sometimes equality means treating people the same, despite their differences, and sometimes it means treating them as equals by accommodating their differences. And I could not agree more."