PAIN, TEARS & JOY

WHEN Loveness Mainato (in picture) set up the Albino Charity Organisation of Zimbabwe (Alcoz) back in 2010, she was a dejected woman trying to find solace.

After giving birth to a child with albinism, autism and epilepsy in 1999, she was accused of prostitution and witchcraft. Others came up with various mythical and cultural explanations for her supposed “predicament”.

As a result, her life took a turn for the worst.

Rejected

Mainato endured all forms of ill-treatment, not only from her family but also from society at large. As she battled to keep her marriage intact, she went on to give birth to yet another child with albinism.

The “new blessing” further created friction between her and the family. It also marked the end of her marriage. Resultantly, she slipped into depression and would seek medical attention for two years. She was later diagnosed with a “severe” heart condition.

“I actually count myself lucky to be alive today. At some point, I considered committing suicide; I was broken; the people whom I thought were my inner circle had betrayed me,” reminisced Mainato.

Two of her four children have albinism. Medical experts define albinism as a rare genetic disorder, where one is not born with the usual amount of melanin pigment.

Melanin is a chemical in the body that determines the colour of a person’s skin, hair and eyes. Most people with albinism are said to have pale skin, hair and eyes. According to the latest report (2022) by the Zimbabwe National Statistics Agency, there are at least 9 753 people with albinism in Zimbabwe.

“My situation forced me to research more about albinism. However, around that time, there were a lot of unsubstantiated beliefs and myths pertaining to the subject. This led to widespread ill-treatment of people with this medical condition,” explained Mainato.

“The terrible experiences I went through still haunt me to this day! This is how I felt the urge to then establish an association to provide a safe space for people with albinism.”

Challenges

For years, apart from learning more about albinism and struggling to give the best care for her growing number of beneficiaries, Mainato battled self-censorship. To avoid emotional distress, she did not frequent places or join conversations that had anything to do with albinism.

“There were a lot of myths around issues of albinism and some of them actually derailed our progress in assisting people with the condition. Most people did not want to be linked with Alcoz. They believed that giving birth to a child with albinism was a taboo, hence association with us could attract a bad omen,” she said.

However, Mainato never lost hope. To change the narrative, her association has over the years been aggressively conducting awareness campaigns, among other initiatives, aimed at educating society about the rare condition. Traditional leaders, churches, legislators and other stakeholders have been a central part of her initiatives. The association, said Mainato, largely lives from hand-to-mouth. Government comes to their rescue in most instances.

People with albinism require sunscreen lotion which costs not less than US$15 for a 200ml bottle. An adult requires at least three of them each month.

They also require a special type of lip balm — one per month — which costs between US$15 and US$25.

“We have friends in the corporate world and other individuals who, at times, assist us but we call upon more well-wishers to come on board and support us with all they can,” she said.

“Transport is a challenge and, as a result, we sometimes fail to reach out to some communities. Being the only Albino association in the country, a lot still needs to be done for us to improve our service provision and accommodate everyone.”

Triumph

Alcoz has over the years provided a platform for local people with albinism, as well as Mainato, to share their testimonies.

The association founder said strides have been made in fighting stigma, though she feels more can be done. Thirteen years later, Alcoz — which is registered with the Ministry of Public Service, Labour and Social Welfare as a private voluntary organisation — has more than 10 000 beneficiaries under its wing.

The association is also recognised by the United Nations. Alcoz beneficiaries include persons with albinism, widows, cancer patients and other vulnerable members of society as the association has become all-encompassing.

Working with a number of doctors across the country, the association also assists less-privileged people suffering from different kinds of ailments.

Threat

In 2017, Zimbabwe-born Emmanuel Nyekete — who was living in Soweto, South Africa — rescued his daughter from a gang of wealth-seekers. The girl, who was born with albinism, had barely turned two when her father was approached by a gang of Tanzanian criminals/kidnappers, who offered to “buy” the toddler. Nyekete was abandoned by his wife following the birth of their daughter but continued to stay in Soweto. Unbeknown to him was that his daughter had been targeted by criminals who wanted to “buy” her, allegedly for ritual purposes.

His ordeal began when a group of men from the East African country began visiting his home, offering an undisclosed amount of money and a fully furnished house in exchange for his daughter.

Sensing danger, he hastily hatched an escape plan. Nyekete sold his house, boarded the next bus to Zimbabwe, where his child’s safety was guaranteed.

This, however, was no ordinary journey home. He dressed his daughter in oversized attire that covered her entire body to avoid prying eyes since he was not sure if the gang was tracking his movements or not. Nyekete’s daughter is one of Alcoz’s members — who, at some point — had to be taken into a safe area and receive psychotherapy.

Shooting Stars Band

Mainato has over the years proved to be a woman of many talents.

She happens to have a passion for the arts and is a revered actress and founder of the Shooting Stars Band — whose members are mostly people with albinism. The idea of setting up the musical outfit, she said, was to provide a platform for people with albinism to showcase their talent and interact with greater audiences.

The sungura ensemble has thus far released four albums, an equal number of singles and a full video.

The group is currently working on their fifth album “Terms and Conditions Apply”. The six-track album is scheduled for release next month.

“Most of the tracks target the younger generation, popularly known as ‘Ama 2000s or Ama 2K. The lyrics are largely life lessons for this generation

“. . . we also have another track titled ‘Takangofanana’, which speaks to society at large, advising that people with disabilities deserve a chance to express their feelings and also fall in love,” she revealed.

Mainato hopes the group’s fortunes will grow from strength to strength through exposure. They taken part in various national events and to take their act borders. have wish across