Pain of living with albinism

12 Sep, 2013 - 00:09 0 Views
Pain of living  with albinism Albinism is a group of genetic conditions that causes a lack of pigment in the skin

The Herald

Albinism is a group of genetic conditions that causes a lack of pigment in the skin

Albinism is a group of genetic conditions that causes a lack of pigment in the skin

Regina Pasipanodya Features Correspondent
Born with albinism, Sarah Ncube has lived everyday of her 34 years faced with discrimination and segregation even from within her family. Ncube is amongst many people living with albinism in Zimbabwe, who says for more than two years, she had to endure a miserable experience living among in-laws who could not stand the sight of her.
“I got married on July 16, 2011, to a loving and supportive non-albino as he had vowed”, she told the writer in an exclusive interview.
“It was so painful especially on my part when we divorced,” she said trying to hold back her tears.

She added: “We failed to keep it together due to family pressure, he was the only person in that family I could rely on. Before we got married every thing just felt right, I could feel that he was the only man for me.”

Ncube was among hundreds of married women living with albinism who had to go through the agony of not being accepted by her in laws.
Just like any African society, her in-laws found it taboo to interact with albinos, let alone took her in as their own daughter-in-law.
Most African societies usually misconstrue and incorrectly attribute albinism to various myths, beliefs and taboos which generally exacerbate challenges.

She said her albinism caused her husband to lose the happiness he used to share with the rest of his family.
“He lost all the privileges of being consulted on family matters,” she said in a very low, painful voice.

“At one time his uncle said to his elder brother at a family meeting, ‘toita sei nhai muzukuru zvatingori vaviri ko ana Davy tichavaverenga here vanoroora varoyi (what is the way forward since we are the only remaining respectable men in this family excluding Davy who marries witches),” Ncube said.

“Since that day”, said Ncube, “being an albino felt like suffering from a deadly contagious disease,” as she turned her face down sobbing.
After a silent moment weeping, she added: “Sometimes my heart bleeds when I think of my situation and many at times I find myself questioning why I was ever created to suffer such pains.”

United Nations World Tourism Organisation brand ambassador and Zimbabwe Broadcasting Corporation radio broadcaster for a programme on disability issues, Soneni Gwizi said women with albinism suffer double discrimination and stigma from their communities and are being ill-treated by relatives because of their skin colour.

“They are called murungu, ikhiya or the white woman, which sees them losing self-esteem and also leaves these women isolated,” said Gwizi.

“Society should embrace women with albinism and stop calling them names as it reduces confidence, social interaction or even inclusion.”
Gwizi is also a woman with disability who has managed to live above challenges faced by people with disability.

According to the National Organisation for Albinism and Hypo-pigmentation, albinism is a group of genetic conditions that causes a lack of pigment in the skin.

This genetic condition can affect only the eyes (ocular albinism) or both the eyes and skin (oculocutaneous albinism).
However, most types of albinism are inherited when an individual receives the albinism gene from both parents.

Disabled Women in Africa co-ordinator Xoliso Msebele said persons with albinism are discriminated, though men with disabilities seem not to be that disadvantaged as compared to women.

“For men, as long as they have money, it is easy for them to be accepted by in-laws and enjoy in their marriages, regardless of their skin type,” she said.

Msebele said most disabled women mostly the albinos sacrifice a lot just to fit in and being accepted by their in laws.
“We have a case in Malawi where most of the young, educated, working ladies with albinism get married to unemployed non-disabled men because there are no men interested in their hand in marriage.

“Some of these men will be genuine and others not. The same discriminated women would have a hard time trying to educate and develop these men,” she said.

This, however, can take five to six years depending on the form of education,” said Msebele.
She emphasised that when the same man gets education and employed, he turn out to be abusive.
The in-laws also would start to abuse her and eventually the man leaves the woman. This shows that women with albinism gives out a lot in order to be keep their marriages, hence in the end they would be left out in the open.

Amai Two (39), not her real name, also said she gave birth to identical albino twins early this year.
“When my in-laws got wind of that, every one came to see for themselves,” said Amai Two.

“They started spreading all sorts of bad things about me saying, ‘I was cursed for committing adultery before I got married.’”
However, according to rights of persons with disabilities (Chapter 83), the State must protect them from all forms of exploitation and abuse and enable them to participate in social, creative or recreational activities.

Therefore, people living with albinism are looking forward to the Government to consider their challenges and implement policies that would create an environment that does not restrain their potential.

“Against this backdrop, it is a goal of the people to ensure that persons with disabilities are fully respected and assisted by the Zanu-PF Government to realise their full mental and physical potential in order for them to be self-reliant so as to participate fully in the national economy and to be able to live with their families and pursue their hopes and dreams while being protected from all forms of abuse or exploitation,” the manifesto reads in part.

Government recognises and protects vulnerable groups in the society including the albinos;
It has been reported that in some parts of Africa like in East African countries such as Tanzania, people with albinism are still being murdered for ritual purposes and also for other purposes which are derived from beliefs, myths and practices of the communities.

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