ALBINISM can be a burden in a society full of prejudices, and Tapiwa Gwenlisa Marange knows what pain this can inflict on an individual.
As a young girl growing up in Harare’s Highfield suburb, she would be teased for the freckles or spots on her skin.
“People would laugh and say she has masamba,” Marange, who is known among her peers as Gwen, remembers, sorrowfully.
The situation was even more devastating because it was not just the kids who mockingly labelled her for the colour of her skin; it was the adults, whom she thought would understand her situation better.
“It takes away your confidence,” she says.
“I understand what people with albinism go through. I have experienced it as a child, as a wife and as a mother,” she says, matter-of-factly.
Having been through it all, Gwen says its time something is done to eradicate the stigma and prejudices against people with albinism.
She has started Alive Albinism Initiative (AAI) as a platform to educate society and empower people with albinism.
“I want to change our mindset,” she says, assertively.
“Yes, we need sunscreen lotion, but there is life beyond sunscreen lotion. People with albinism have families so if we give them lotions, how are they going to fend for themselves and their families,” she asks, rhetorically.
Indeed initiatives that have so far been made to assist people with albinism have only gone as far as supplying lotions to protect their skins from an inclement weather.
Gwen says they need life skills and to regain the confidence lost from stigma associated with albinism.
“I want to be an ambassador against intolerance,” Gwen says, defiantly.
In May last year, she went to Kanthari in South of India, on a seven-month scholarship programme for visionaries who have overcome adversity and are keen to drive ethical social change in their part of the world.
There, she was taught a number of things, including capacity building and organisational skills.
But one thing struck her most: “They take time to know you as an individual together with your vision. Kanthari became my second home – there was no stigmatisation.”
The skills she earned while at Kanthari would equip her to confront the challenges ahead.
She wants to come up with initiatives that would empower people with albinism with entrepreneurial skills so that they are able to start projects and fend for themselves.
She will rope in those who have made it in life to mentor others so that they can have the confidence that they can do anything. That mentorship programme will also rope in captains of industry, as well as those in many other spheres of
life, to help deal with the stigma and inspire albinos.
But she thinks the biggest challenge will be to make sure those still young appreciate that albinos are human beings whose only difference is the pigment of their skin.
Together with her partners, she wants to create a questionnaire for schools to understand how many students with albinism each school has, and their challenges.
Then a road show may then be organised to teach children in various schools across the country to understand what albinism is all about.
She has partnered with the Zimbabwe Schools Development Association to push this agenda.
“We have to catch them young,” she says. “Society needs to understand what albinism is and deal with the stigma. If we go to schools and teach children it will make a difference.”
She is also contemplating seminars with teachers so that they can help champion the cause.
She also believes families with relatives with albinism should also understand what it means to be an albino.
“There are a lot superstitions. People think albinos are a curse. Look at what happened in Malawi. We’re getting worried because it’s closer to home,” she says.
Nearly 20 albinos, mainly children, have reportedly been wounded, abducted or killed in East Africa in the past six months. Most of the cases were reported in Malawi, Tanzania and Burundi.
The Malawi government last month ordered its police to shoot anyone attacking or seen abducting albinos in a bid to curb their killing.
Reports have quoted United Nations officials saying that at least six attacks on albinos were reported in Malawi in the first 10 weeks of 2015, compared to four incidents over the past four years.
In Tanzania, albino babies are butchered by criminal gangs for witchcraft. According to Washington Post report, albinos in Tanzania “are thought to possess special powers, but not in a good way”.
“Superstitions feed myths that albinos are ghosts, sorcerers or demons who have been cursed and, when hunted and killed for body parts, bring good luck to others,” the report said.
Albinos in Tanzania are at an increased risk. Many have been kidnapped and dismembered this year alone, forcing young vigilantes to arm themselves with machetes, axes and knives to hack and burn culprits.The vigilantes burned to death a 58-year-old woman they believed was using albinos for their perceived powers.
Reports also say the Tanzanian government has cracked down, banning witch doctors and making their crime against albinos punishable by death.
Last year, the UN declared June 13 of every year “International Albinism Awareness Day”.
Its commemoration will start this year. The UN has invited all member States, organisations of the world body and other international and regional organisations, as well as civil society, including non-governmental organisations and individuals, to observe International Albinism Awareness Day in an appropriate manner.
In Zimbabwe, Gwen hopes government, as well as the UN will come to the table to make sure they raise as much awareness as possible on the situation of albinos as well as cultivate tolerance on people born without pigment in their skin.