Acceptance is the first step

Today is the International Albinism Awareness Day. Our News Analyst MERCY MALIKWA catches up with a nurse-cum-midwife who personifies triumph over adversity amid killings, abductions and superstitions that target people with albinism.

People with albinism in the country are haunted by killings, exhumations, discrimination and stigma, but Grace Massa, 37, is proud of the way she was born.

 “I faced some challenges in all circles, but it did not stop me from pursuing my dreams.  Stigma and name-calling were rampant at school, in marketplaces and everywhere I went,” she says.

The public health specialist recalls being shunned by friends who sometimes edged closer for selfish reasons.

But exclusion only fuelled her to achieve her dream.

The short-sighted woman, who has been wearing spectacles since she was in Standard Three, always strived to beat her tormentors.

The registered nurse-cum-midwife holds a master’s in public health and health administration, specialising in management of health institutions.

Her resume include coveted managerial appointments at Nkhoma College of Nursing and Midwifery where she was deputy principal until last month.

She has worked at Mulanje District Hospital and Mulanje Mission College of Nursing.

Currently, Massa is chairperson of the African Disability Alliance (ADA).

Acceptance

Massa’s solitary rise largely happened in learning institutions where she was the only person with albinism.

To her, acceptance is the first and most important step for people with albinism,  their parents and siblings.

“People around you or your family will treat you the way you treat yourself. You can do everything if you are determined,” he says.

Massa has a word for everyone: “Work hard in class or business and become a prominent and remarkable citizen of our beautiful country.”

Massa is a second-born in a family of six. Three children, including her twin brother, have albinism. Their parents are free from the genetic condition which results from lack of pigmentation in the skin and hair.

While she believes acceptance is almost everything, she says supportive parents and friends also lessen everyday challenges faced by persons with albinism.

The smiles neutralise the burdens and discriminatory tendencies they suffer from home.

Living dangerously

But for people with albinism, life has not been easy lately.

In the region, her pale, “natural beautiful” skin fuels mistaken beliefs that our body parts have magical powers to make people rich.

This poses a constant danger to people with albinism.

Hunted, the vulnerable minority is haunted by the fears as they do not know who the attackers are and when the attacks would occur.

The killings and abductions have made her adjust her life, she says.

“I pray to God to cover me up from people who violate our right to life in order to satisfy their selfish interests. I pray that justice must be done in all the cases that the Association of People with Albinism in Malawi [Apam] and the police have taken to court,” she says.

Albinism in Malawi

In the country, the condition is still profoundly misunderstood.

Since 2014, the number of brutal killings and exhumation of persons with the condition has been on the rise.

They are hunted dead or alive, with their graves being tampered with.

Hunted like game

Last year, Ikponwosa Ero, the United Nations (UN) independent expert on rights of persons with albinism, said almost 10 000 albinos in the country face “a risk of systemic extinction” if government fails to end these attacks.

Apam says 21 of them have been killed since November 2014.

The association has registered121 cases countrywide, but almost 40 have been concluded in court.

Apam president Overstone Kondowe says: “Persons with albinism have become targets of criminal gangs operating in Malawi, hunting them like animals for their body parts. The attacks are driven by myths that their body parts bring luck. There is no proof to that and there is no known market for body parts trades.”

The latest case involved the killing of 9-year-old Isaac Mayeso who was abducted by a gang which broke into his grandmother’s house in Mozambique on May 28.

“The case demonstrates the need for coordinated national and regional commitments between Malawi and the rest of Africa to end cross-border trade in body parts of persons with albinism,” said Kondowe.