Battling to end prejudice: Women with albinism share their horrific experiences

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Women of all ages with albinism affected by gender-based violence, rape and discrimination

She was raped three times – first when she was only six-years-old, then at age eight and again when she was 12 – all this while she was in the care of close relatives.

Now 42, the woman recalled that one of her alleged rapists poured hot tea on her in an attempt to cleanse her of his semen.

Nokuzola Matye*, and other women with albinism, shared their horrific experiences at the Access to Justice colloquium hosted by the department of justice and constitutional development last month.

They were brought together through a partnership between the department and Khulisa Social Solutions, a non-governmental organisation (NGO), to share their experiences under the theme Stolen Moments of Unspoken Secrets.

Other shared accounts included:

. A woman who was abused emotionally by her former husband for 22 years. She said the abuse was still affecting her today. “It has made me very vulnerable and sceptical. Today I feel relieved after hearing other women speaking out, knowing my rights. Knowledge is power.”

. A second woman said she was violated by her husband at the age of 19. “It was emotional and physical abuse. I had nowhere to go and no one to support me, that is why I stayed with him.

“I reported him [to the police] but he was never arrested. Eventually, I divorced him – after 18 years. This has affected me in that I am now afraid of dating.”

. Another woman said she had been subjected to violence since she was five-years-old, by a family member. She had never spoken about the abuse until at the colloquium. “I was scared at that time and kept it to myself. I have never spoken about it with anyone. As a result of bottling everything up I am not comfortable generally. I do not allow any men near my daughter.”

Matye said she was first raped when she was aged six by a 42-year-old relative while living with her aunt in Bloemfontein in the Free State.

“When I was eight I was raped by my aunt’s cousin. Then again at age 12 I was raped by my cousin who was 22. He poured hot tea over me. My aunty knew [about the rape] but did nothing about it,” Matye said.

She said that at the time, her mother was working in Johannesburg and they were only reunited in 1990 when she came to live with her.

Other issues raised by people living with albinism at the colloquium included allegations of being discriminated against in the workplace and lack of jobs.

They also raised concern that pupils with albinism were being bullied by their peers and by teachers at school.

There was also lack of access to resources such as sunscreens and eye care services.

Khulisa founder and managing director, Lesley Ann van Selm, said people with albinism were being raped, especially in rural areas, but there were no statistics of the rapes because most cases were not reported.

She said these cases were concealed within their families.

The NGO’s recent report on the lived experiences of 27 women with albinism – of all ages who had survived gender-based violence – revealed that:

. 20% of the women had experienced sexual abuse;

. 80% had experienced emotional abuse;

. 60% had suffered bodily harm;

. those aged between six and 49 were exposed to violence;

. 75% were currently experiencing violence; and

. about 40% of perpetrators of these crimes were family members, while friends accounted for 60% of the cases. Van Selm said most rape cases were not reported to the police because survivors feared secondary victimisation by the police and their own relatives.

“Many of those raped or exposed to various forms of gender-based violence are forced to keep quiet about this, lest they be thrown out of the breadwinner’s home. This reduces people to silence and even their mothers will refrain from taking any form of action due to ‘financial bondage’.”

Van Selm said there were myths associated with albinism – such as the belief that they bring people good or bad luck.

Others believe that having sex with a person with albinism cures HIV/Aids and that intercourse with such people is often perceived as a “sweet treat” due to the “novelty of their complexion”.

“Because people with albinism are abused throughout their lives, they are generally more vulnerable than other population groups. This makes them extremely vulnerable and thus susceptible to ongoing acts of violence and discrimination,” Van Selm said.

She said Khulisa had a strong working relationship with government, especially the departments within the criminal justice cluster.

Lesley Ann van Selm

However, Van Selm said government was plagued by bureaucracy and, because of the lack of adequate resources to operate, few policies were actually enacted and were not understood or applied at grassroot level.

“This results in individuals not exercising their rights and because of poor services rendered in many government departments, aggrieved individuals do not bother to report cases or to seek help because effective support is not forthcoming,” she said.

Van Selm said government and communities could help by ensuring that there was public education to end the myths associated with people with albinism.

Support groups, she said, needed to be established for women throughout the country and to be managed by suitably skilled and trained women with albinism on issues such as storytelling, debriefing, victim empowerment, resilience development and opportunities for income generation to improve their self-esteem.

Police officers, Van Selm said, also needed to be trained and sensitised about issues affecting women with albinism and to improve the police’s handling of gender-based violence cases.

“We are in the process of developing a mobile app for people living with albinism in general but specifically where rape cases can be reported.”

The app will also help survivors to access relevant services and report poor service delivery in government departments.

Van Selm said they were happy to work with other NGOs and individuals affected by albinism.

*Not her real name

TALK TO US

In a country where we are so conscious of the colour of our skins, why do you think people with albinism are targeted? Has government failed to protect people who have albinism? Why do you think there is still so much superstition around them?

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