The Sunday News
Vincent Gono, Features Editor
THEY call her NaNkawu in the neighbourhood but she is not moved. Inkawu is Ndebele for monkey and it seems society has found it fit to liken her two out of three children living with albinism to monkeys.
Whatever the connection or is it likeness between a monkey and people living with albinism, Mrs Gloria Sibanda says the name calling is just meant to deride and subtract confidence in the young ones who have to bear with the unpleasant comments.
She says she is not perturbed and she dutifully responds to the derision although deep inside her she will be pitying not only the arrogance of those doing so but their ignorance as well.
To her, society has normalised the abnormal and has thrown out all the caution, the morals that define the African concept of humanism or ubuntu to the wind that fiercely threaten to sweep away all societal decency replacing it with a shameful nakedness that knows no taboo.
Mrs Sibanda said the level of intolerance started right at the hospital when she delivered her first born who is now doing his Ordinary level.
The nurses, she said, would hold the baby with a facial expression that betrays their dislike of it — like they were holding a sin, dirty.
“Whenever the child cries, they (nurses) always come running to check and I vividly remember asking one of the nurses why the whole ward would rush to my bed to see as if the child is not allowed to cry, that is when one of them told me that they think I can easily kill the child or leave the child at the hospital.
“I told her I have accepted my child and won’t do anything to harm him,” she said, adding that the reaction from the nurses who were supposed to know better and give both emotional and moral support was just but shockingly unfair.
She said the intolerance did not end at the hospital after she delivered, it continued and even got worse when she got home.
Since it was her first born she had been sent to deliver at her parents’ home and when her parents went to see her after she had given birth they were evidently troubled.
“They had to ask me how they will explain it to my husband’s family and I told them if they refuse I will take care of the child.
Fortunately when my husband learnt about it he accepted it with a surprising ease. I did not know it was not the first time they have had such cases in their family but even though, it did not stop people from talking.
“There was a lot of pressure from his relatives but he stood by me. Some were even suggesting that he leaves me but he remained, unmoved, supportive. It was not easy for me even when relatives come to see the child talking among themselves and inquiring on who the child takes after. Some even seem to suggest that the child was not their family’s meaning I have probably prostituted and it was painful,” she said.
Asked on how her children were fairing socially, she said all was well but hinted that they faced challenges at school as some teachers also do not understand the condition.
“My son was a class monitor and sitting in front where he was strategically placed to enable him to see clearly but there was this teacher who removed him and sat him at the back of the class.
“The teacher just didn’t like him and I had to go and talk to him and he understood. So you see, society still has this laid back and discriminatory approach to people living with albinism,” said Mrs Sibanda.
She said her second born was not born with albinism and everything was normal. Her third and little one was however, born with the condition and it was difficult for the midwife to break the news to her.
“She would look at the child and then at me. She would cover the child and act uneasy, like she didn’t want me to see my bundle of joy. I noticed it and I asked her if the child was an albino and she fidgeted and said ‘yes’ obviously surprised at how at ease I was. I told her I was expecting it and she sighed and admitted she was not sure I will accept it,” said Mrs Sibanda.
She said a lot needed to be done to conscientise the communities on issues to do with albinism as name calling have long been a characteristic defining people living with albinism where a deep seated and stubborn culture of hate and feigned sympathy bordering on intolerance had been used by society.
This, she added, was despite efforts by various stakeholders to educate the country’s communities against discriminating people living with albinism.
In some instances archaic ritualistic traditions associated with black magic and superstition have continued unabated causing inhuman treatment of people living with albinism.
At face value the situation looks placid almost normal but beneath the veneer of calmness is a grinding unforgiving society that looks at people living with albinism with scorn and derision at least according to the Zimbabwe Albino Mission Trust (ZAMT)’s spokesperson Mr Terrance Mushambi who is also living with albinism.
He reflects how hard life is to those living with albinism saying they are subjected to discrimination and in the absence of an arm that deals with their problems and provides a voice to Government they are left to wander like orphans and street kids.
“There is no Government arm that looks particularly at us as a special group. We cannot bunch ourselves with people living with disabilities. We are not disabled. Not that we are calling for any special and unique treatment but we have needs that should be catered for at national level and probably as a matter of policy.
“We need sunscreen lotions and glasses but these are way beyond the reach of many of us. We are a group that therefore belongs to anyone who cares. Maybe that is why we are treated more as objects of sympathy.
“We have very few among us who have made it in life and those that have crossed the divide are no longer willing to associate with the ones who are still crying out for help.
“A lot of us living with albinism have faced a lot of negativism equalling to one with leprosy and people who perceive themselves as normal who have no appreciation of our condition want to quarantine us,” said Mr Mushambi.
Alluding to Mrs Sibanda’s narration of her experience he said parents always find it difficult to accept having children living with albinism where both society and relatives worsen the situation by bringing to the fore beliefs and superstitions associated with albinism.
He said for children the environment was always fraught with all kinds of discrimination, stigmatisation and hate from her peers and society at large including teachers and even the church where they were denied roles in choirs and even ushering.
“Deriding names like inkawu, murungudunhu (village white person) or musope are used to refer to people living with albinism. Spiritual healers have not eased life for people living with albinism.
“Instead they have contributed significantly to their killing and rape by perpetuating the false belief that if one sleeps with an albino they get healed of HIV/ Aids and if one kills an albino they become rich instantly,” he said.
He added that the belief that having a child living with albinism was a curse as well as not getting enough support from society led to most parents locking up their kids thereby depriving them of their rights.
The Zimbabwe Albino Mission Trust (ZAMT) which has since officially been registered, he said, sought to enhance social justice for all people born with this genetic condition that reduces the amount of melanin pigment formed in the skin, hair and eyes so that communities would understand that they were capable beyond measure of doing all other things that other people could do.
The mission of ZAMT according to Mr Mushambi is to see an albino society that appreciates and understands their condition, a society that lives a life that is productive, rewarding and dignified and have a vision to become a source of true information about all aspects to do with people living with albinism.
To offer a platform where all people and families can come together and coordinate their efforts in trying to achieve the organisation objectives.
Ms Barbra Mudzimurema who is a board member of ZAMT added that the organisation was formed to help complement other organisations in dealing with issues of stigma and discrimination of people living with albinism by educating society on the need to drive towards inclusivity where no one was discriminated against on the basis of colour of their skin and health condition.
Scientific research has shown that albinism is an inherited disorder that is present at birth and therefore children are at risk of being born with albinism if they have parents with albinism, or parents who carry the gene for albinism.
It is usually caused by a defect in one of several genes that produce or distribute melanin.
The defect may result in the absence of melanin production, or a reduced amount of melanin production. The defective gene passes down from both parents to the child and leads to albinism.
East Africa’s Tanzania is thought to have the largest population of albinos in Africa. They are especially persecuted in Shinyanga and Mwanza, where witch doctors have promoted a belief in the potential magical and superstitious properties of albinos’ body parts.
Many people in the Great Lakes Region of East Africa believe it is a punishment from God or bad luck, and that albinism could be contagious, which is often the view of even members of the medical and professional community.
These misconceptions, coupled with the lack of education, are some of the key reasons that albinism is so heavily persecuted.
This lack of knowledge about people with albinism means that folktales and superstition in the name of witchcraft take the place of medical and scientific facts in the minds of many native Africans, with and without albinism, which in turn has major effects on the social integration of albinistic people into African society.
