The Sunday News
Hazel Malimbiza, Sunday News Correspondent
On 1 September 1999, Ms Loveness Mainato, gave birth to her second child but the doctor did not tell her that her bundle of joy had albinism, a condition which later led to her child facing discrimination.
At first Ms Mainato (49), was alarmed when she looked at her new born baby.
“I was worried because my daughter was very white in complexion. The doctor concurred but curbed my fears by assuring me that she would get dark with time. So my husband and I went home thinking our child will get darker,” said Ms Mainato.
But it turned out the child never got darker in complexion as the couple had hoped. In no time they discovered the baby had albinism. Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes.
Most people with albinism have very light skin and hair, but levels of pigmentation can vary depending on one’s type of albinism. There are two main types of albinism which are oculocutaneous albinism (OCA) and ocular albinism (OA). OCA affects the eyes, hair and skin while OA which is much less common, affects only the eyes, while skin and hair may appear similar or slightly lighter than that of other family members. While Ms Mainato and her husband were still shocked that their daughter had albinism, their relatives made their situation worse.
“Relatives laughed at the child, they mocked me, and they just had fun out of the condition of the child,” she said.
She revealed that she was further hurt when her husband’s family told her husband to desert her because she had given birth to a child with albinism.
“They said it was a misfortune to have a child with albinism in the family. What also pains me is that they concluded it could be a result of prostitution. Other members of the community regarded it as a result of witchcraft. There were just so many negative perceptions surrounding the condition of my child,” said Ms Mainato.
Her marriage remained intact for that period and then a few years later the couple faced yet a similar obstacle.
“I gave birth again to another child (son) with albinism on 25 September 2007. The discrimination became worse and this time my husband could not withstand the pressure from relatives. He deserted the family and we eventually separated,” she said.
The unfortunate incident saw her plunging into life threatening emotions.
“I was lonely, I was depressed, I was heartbroken, and I was traumatised. I was hospitalised at Chitungwiza hospital because of the condition of my children and because my husband had left me. Not that I didn’t like my children, but just that people subjected me and my children to mockery and ridicule,” she said.
For a long time, Ms Mainato allowed her despair to live under the hopeless resignation that nobody cared, or wanted to talk to her, and that nothing was going to change. Ms Mainato represents several women who face discrimination after giving birth to children with albinism. These women’s children also face discrimination due to a number of negative opinions on the causes of albinism such as linking albinism with witchcraft or maternal promiscuity.
But amid all the stigma Ms Mainato encountered, her hopes were stirred by Chitungwiza hospital medical practitioners who gave her strength to soldier on – and she did – the same way buds find their way through bitter frost. They encouraged her, showed her love and unlocked her smile.
“Being admitted helped a lot because the hospital staff comforted me. They told me that there is nothing wrong with the condition of my children. They also encouraged me to accept the children because others do not even have a single child and they also told me God has a reason for everything that happens in life,” said Ms Mainato.
The challenges she went through as a mother of children with albinism inspired her to work on the formation of the Albino Charity Organisation of Zimbabwe which struck a chord with other parents of children with albinism resulting in them to joining her.
The organisation now tackles the challenges of people with albinism from grassroots level since people with albinism face a lot of challenges such as discrimination, segregation and marginalisation starting from the family in which they were born, to the society and community at large, to the schools where they learn up to their work places.
“We have awareness campaigns within family members and communities at large on albinism because many people do not understand albinism,” said Ms Mainato.
She highlighted the various successes of the organisation.
“We have assisted most children with albinism with school fees. We also have a programme which has been put in place to assist children to attain education to their best level which is a programme which runs from ECD up to the level of employment.
“We also assist people with albinism with skin medicinal, and these are the sunscreen lotions, Dettol, disinfectant liquids, lip balms and bath soap. We reach out to remote areas like Binga, Buhera, Chiredzi, Chinhoyi, Murambinda, Masvingo and Murewa. It is our wish to cover the 59 districts in 10 provinces but due to limitation of resources we are limited to a few areas. We try to target high temperature areas where people there are experiencing a lot of challenges like skin rashes and skin cancer. Since 2010 we have been assisting quite a number of cancer patients,” she said.
She also highlighted that they also capacitate children with albinism for sustainable livelihoods through income generating projects.
“When resources permit we sponsor them to learn projects like making peanut butter, sewing reusable sanitary wear, shorts and skirts for sell. We also have confidence building programs for example we educate the children on how to present eloquently before crowds,” said Ms Mainato.
She indicated that though they are facing some challenges which include failing to foster some children due to inadequate paperwork eventually they hope to attain all their goals and in the near future become an internationally recognised organisation. -@HazelMalimbiza
