Being a family with albinism

When 24-year-old Lukiyasi Boniface from Chinkhu Village, Traditional Authority Kachere in Dedza District married his sweetheart about three years ago, little did he thought that theirs would be no ordinary marriage.

While most couples in their village are usually found together going to the market, to the garden, to see relatives living in far away villages, Lukiyasi and his wife, 21-year-old Rodina Lazaro, do not have that privilege.

Whenever the young couple wants to go anywhere, be it just an ordinary romantic stroll, they have to be accompanied by a third party, a relation or someone close to them.

But mostly, they are advised not to go far away from their home.

This is because people with albinism like them are haunted by killings, exhumations, discrimination and stigma following superstitions that their body parts bring fortune.

Lukiyasi and Rodina’s  only two children, two-year and five-month-old Egritta and a-year-old Yohane, also have albinism.

“I feel bad and unnerved that I cannot protect my wife and children from any harm because I am also a target. Considering that our lives are at risk, we are usually not allowed to go away from home alone, this is sad for me,” says Lukiyasi.

Name calling

Rodina also shares her husband’s concerns about their family’s safety in a place which is supposed to be their home.

“Apart from fearing for our lives, we are also called different names and this makes going to places difficult because everywhere we go, we usually come across two to three persons ready to call us names,” she says.

The mother of two explains that while others would just call them derogatory names, others go a step further, calling them money.

“It makes me feel sorry for myself, my husband and my two children.

“If people can go to the extent of thinking we are money, where are we going to walk freely? Where are our children going to feel safe if not among their kinsmen?” she quizzes.

But it is not only feeling unsafe to be together and go places as a family and being called different names by people that bothers Lukiyasi.

The father of the house is also not comfortable with superstitions that make him and his entire family uneasy and makes it difficult for him to fend for his family.

“I mostly rely on piece works in people’s gardens and households as a source of money to fend for my family. However, that is hard now since sometimes I have to travel long distances to get the piece work,” he says.

No one to trust

The reality of the long distances to be travelled to seek piece work and having to be employed by people not very known to him scares Lukiyasi.

It makes it difficult for him to trust people. He is always suspicious. Everybody can be an enemy.

He says: “I don’t know where the enemy will come from. Sometimes, when I go to look for piece work, I am usually scared when the thought that maybe instead of getting piece work I will meet callous people who will abuse and attack me creeps in.”

Ignorance fueling abuse

President of Association for People with Albinism in Malawi (Apam) Overstone Kondowe says most of the abuse and discrimination people with albinism face is due to lack of adequate and proper information on the condition.

“We are usually abused and discriminated against because people in our communities do not have adequate information about us,” he says.

Some people are still not aware that people with albinism are human beings just like anyone else and that they can get married and raise children.

Others are also not aware that people with albinism can participate in the socio-economic development of their communities and the country at large, says Kondowe.

He says there is need for chiefs and religious leaders, teachers and duty-bearers such as councillors and members of Parliament (MPs) to take a leading role in providing information to people about albinism.

They must inform the people that albinism is just a genetic condition which results from lack of pigmentation in the skin, hair and eyes.

Good news

As people like Lukiyasi and his family continue to live a troubled life and while Apam hopes that the information gap will be closed, there is hope that all is going to be well.

The UN Women, with funding from the United Kingdom’s Department for International Development (DfID), is conducting awareness meetings on protecting the rights of people with albinism.

According to UN Women’s human rights specialist Habiba Osman, the awareness meetings are being conducted in six districts, including Dedza where Lukiyasi and Rodina come from.

The other districts are Zomba, Mangochi, Ntcheu, Mulanje and Chikwawa.

“These awareness meetings are being conducted as part of a second phase of a project called Ending Violence against People with Albinism which UN Women is implementing,” she says.

“The project’s main goal is to establish community based protection systems, provide psycho-social support and material assistance to PWA as well as increase community awareness on the rights of PWA.” n