HomeMultimediaThe difficult path to success for people living with albinism

The difficult path to success for people living with albinism

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IN the European folktale Cinderella the title character is a woman living in unfortunate circumstances that are suddenly changed to remarkable fortune.

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Saturday dialogue pic for Ropafadzo Mapimhidze - Copy

 

THE CENTRE SPREAD

BY ROPAFADZO MAPIMHIDZE

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What’s in a name?

Cinderella Mushambi (21) is an assertive second year University of Zimbabwe (UZ) student studying social work. Her fellow student at the institution, Pardon Chitsvori, is also assertive and has a clear vision of what he has to do.

Both are not your ordinary student; they live with albinism. Their different paths to the UZ show how society deals with this condition and how the prejudice and discrimination they suffer has influenced who they are.

Apparently, Cinderella’s parents got the inspiration for their child’s name from the folktale and had every hope she would live to be like the mythical Cinderella. But Pardon’s name could have been influenced differently, for it suggests that the parents felt they had done something wrong for which they had to be pardoned.

Both Cinderella and Pardon have the late Professor John Makumbe as their role model.

Makumbe

Cinderella’s command of English is absolutely amazing; she exudes confidence in her speech. Her skin glows and is flawless.

She says she has set goals for her future; her condition has not deterred her zeal to climb the ladder of success. Albinism is a rare genetically inherited condition which results in a reduction or complete lack of pigment (colour) in the skin, hair and eyes. This can result in pale skin that burns easily in the sun, virtually white hair, very severe short sight and photophobia (severe sensitivity to light).

Apart from the physical challenges of albinism, it also brings social and cultural challenges. Albinos face discrimination, violence, ridicule and in worst cases, even dangerously superstitious legends that lead to their sacrifice for ritual purposes.

“My mum was very protective and felt that I would be safer living with my aunt who lived in Barham Green (an affluent sophisticated suburb) and not Pumula (a low-income suburb) where my family lived. I would come home to my mum at weekends and this created problems for me because attitudes of people in Pumula and Barham Green were miles apart.

cinderella 2

“My mum would stop me from playing in the sun with other children in Pumula and it was only years later that I discovered that she paid so much attention to me because I was an albino. She was trying to protect my skin from getting burnt and in Pumula it is too outstanding,” Cinderella said.

She says whether or not albinos use sunscreen lotions, they should stay away from direct sun rays.

“I lived with my aunt in Barham Green for 13 years. It did make sense then because my mum was trying to protect me from the stares and bad comments, but in Barham Green it was nice because we lived with people from all walks of life like Indians, Europeans and they sort of understood that albinism was just a condition that was no different from other disabilities.

“I was the last born of three children, but my dad died when I was just three months old and I have absolutely no recollection of him,” she said.

But Pardon (24) spoke at length about challenges he experienced as he was growing up in Gutu.

Listen to Pardon’s story below:

He is the last born of four children, of whom the eldest, a nurse aid at Harare Hospital, is also an albino, the first such people to be born with that condition in the entire Chitsvori clan.

“The community did not have a clear understanding of what albinism is and when I tried explaining to the teachers like for instance that I was short sighted, like all albinos are, they never took any action. The general attitude was that of hostility,” he said.

Pardon said he faced harsh discrimination at his primary school in Gutu as other children could not play or relate with him because he was the odd one out.

“Schoolchildren could not sit next to me, share books, or eat food with me because they felt that it was a contagious disease. We were provided porridge supplied by Care International, but children brought their own plates and spoons because parents thought their children would turn “white” if they used the cutlery and plates that I would have used.

“It was the most horrible experience for me although when I was born, my family accepted me because I was not the first child in the family to be born with albinism,” he said.

“I transferred to another school for people with disabilities in Kadoma and that is where we had teacher’s specialised in children living with disabilities. I was comfortable at that school,” Pardon said.

Both Pardon and Cinderella spoke highly about the late Professor John Makumbe, who they described as a role model because he achieved the highest academic achievements despite the odds that he experienced as a child.

Cinderella views Makumbe as an icon in the liberation of albinos in Zimbabwe because he fought all the odds to become one of the most outspoken politicians and rights activists in Zimbabwe.

These views were echoed by Pardon who said although he had heard about Prof Makumbe, he never got to meet him, describing this as tragic.

“I wish I had met him because I understand that he did a lot for people with albinism,” she said.

Both Cinderella and Pardon noted that albinos need sunscreen lotion which unfortunately was beyond the reach of many because it is expensive.

People with albinism are expected to wear hats, long sleeved shirts and trousers so that the sun does not directly hit their skin.

chitsvori 2 (2) etched

“This is the tragedy befalling albinos in the rural areas that spend their time exposed to the sun because they are ignorant about this fact and hence they get burnt and suffer from various skin cancers and die,” Pardon said.

 

He noted that women living with albinism face more challenges than men and that most families are not willing to have a daughter in law that has this condition.

“There should be more awareness on this condition because there are some children that are kept away from the public in rural areas and hence fail to access education because of the stigma surrounding albinism.

But not many albinos are as lucky as Cinderella, who was raised in a modern home and a community that fully understood the disability, and hence realised her full potential.

Africa is no doubt one of the worst places to live as an albino, in a land where crazy superstitious beliefs and ignorance reign supreme.

In Tanzania, for example, traditional healers and witchdoctors have long considered the body parts of albinos as being essential to their magical recipes.

Tanzania’s albinos stalked by cancer, stigmatization and murder.
Tanzania’s albinos stalked by cancer, stigmatization and murder.

Men living with HIV and Aids have been known to abduct young albino girls in the belief that raping them might help cure their afflictions.

“I urge the Zimbabwe government to recognise the problems we have and get sunscreen lotions and creams for free like they do with people living with HIV. We also need to encourage families to think positively about albinism, putting aside all the myths and falsehoods that have caused us so much pain. That awareness can bring a lot of change,” Cinderella said.

Pardon said when he finally made it to university, UZ Vice-Chancellor Levi Nyagura explained in detail, during orientation, about the various students with different disabilities and this is how the institution has managed to demystify albinism.

A source at the UZ said in a telephone interview that Professor Nyagura is a rights activist who has ensured that students with various disabilities are afforded the opportunity to enroll and excel within the institution.

“Last year we had nearly 20 students living with albinism, but data for this year is yet to be compiled. Yes, the number of such students is rising at UZ because there is a waiver of fees and accommodation for students with albinism; plus affirmative action that will ensure more register,” a source said.

Pardon, who lost both parents in a car crash, noted that there could be over 40 students with albinism at the institution and that there were four such students in his stream.

The source also added that this is as a result of the awareness programmes conducted by various NGOs that have encouraged families to recognise albinism as just a condition that does not deter them from attaining any kind of education. Both Cinderella and Pardon passed their ‘A’ levels with flying colours each attaining 13 points.

“I have most definitely been discriminated against. I’ve had to deal with name calling and bullying at school. All my life I have been excluded from society because of who I am. A lot of people with albinism are unemployed, and often rejected for jobs because of our condition,” Pardon said.

But Cinderella is not as pessimistic. She says, “I think before I get married I need to be comfortable in my own zone and really accept who really I am. I can’t say I have accepted my condition and I need to take time to be comfortable and marriage is really something not on my mind as yet.”n

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