Shining a light on albinism
A young South African woman who was bullied as a child because of her skin,hair and eyes has become an activist and was honoured by the queen
Whenever Siphosethu Mbuli moved homes, she would have to explain to people why her skin, hair and eyes were lighter than theirs.
At 14, Mbuli, who has albinism, was orphaned and she moved from King William's Town in the Eastern Cape to her father's family in Kayamandi, near Stellenbosch in the Western Cape, where the bullying continued. Children shouted slurs to her face as she walked to school.
"It was like they had more confidence to face me and call me names," she says. "I didn't realise the bullying could be worse in a larger community."
Her uncle's family did not make her feel her albinism was a disability and sent her to a regular school where the teachers made accommodations for her weak eyesight.
It was on the playgrounds that conversations about albinism started. "In a way, it allowed me to initiate the conversation because I knew they would be listening," she says.
Mbuli, 24, is now a community activist and recently earned a young leaders award in an international programme headed by Queen Elizabeth.
At the awards ceremony in the UK last month, she wore a lace gown and sat next to the Duchess of Sussex, after shaking hands with the queen.
"It gives me a huge platform to continue doing my work. A major part in activism is getting a chance to speak, to tell people about the challenges and to get them educated on albinism," she says of the experience, which includes mentoring and business training in London and at Cambridge University.
There is a UN programme on albinism which highlights the work of people like Mbuli.
Among those listed are Malian musician Salif Keita, Kenyan high court judge Mumbi Ngugi, British Paralympian Kelly Gallagher, Indian writer Mehak Siddiqui, US actor and model Shaun Ross and model and jazz musician Connie Chiu, who was born in Hong Kong.
Mbuli says one of her campaigns is to change the way people with albinism are portrayed in the mainstream media.
"There is an issue of people with albinism being shown as evil in music videos and movies," she says.
"There's a Katy Perry song where Shaun Ross plays a supernatural being surrounded by white light. Some models are doing phenomenal work, like Thando Hopa, who is also an activist. But is it a fad or a trend to use people with albinism as a punch point?"South African model and lawyer Hopa was part of the 2018 Pirelli calendar featuring an all-black cast in an Alice in Wonderland-inspired shoot.
She has said that her modelling career affirmed the representation of different forms of beauty.
Hopa told Forbes magazine: "I think that is an important message of inclusion, diversity and integration. You can accept difference without sidelining it. The calendar did that for me. It said difference can be embraced and not sidelined."
Mbuli agrees, saying that there are two sides to the commercialisation of albinism.
"For me, it is something deeply embedded in who you are as a person, and to use albinism as a trend for a feature is problematic.
"It is important to put albinism on a platform to increase awareness and for visibility, but not for a trend or a season."
There are even more pressing issues that affect and endanger people with albinism - including ritual murder and rape.
The Office of the UN High Commissioner for Human Rights hashtags the campaign #notghosts.
Its manifesto says: "The worst expression of discrimination against persons with albinism is their dehumanisation, which lays the foundation for horrifying physical attacks against them.
"Because some believe that they are magical beings or ghosts, they mutilate or even kill them so their body parts can be used for witchcraft rituals.
"These attacks claim many lives and surviving victims and their families experience severe trauma.
"Persons with albinism deserve to have their rights to life and security protected, as well as the right not to be subjected to torture and ill-treatment.
"Education and awareness-raising campaigns can help combat superstition and stigma associated with albinism."
Mbuli says there is still a stigma attached to albinism in many parts of Africa, where traditional beliefs include the myth that sleeping with a person with albinism can cure HIV/Aids.
More than 18 murders of people with albinism have been reported in Malawi since 2014.
In Tanzania, where an estimated 7,000 people live with albinism, the UN reports that 80 people with albinism are known to have been killed since 2,000.
Many killings are linked to the trafficking of body parts for rituals.
In 2018, there were two albinism kidnappings and murders in South Africa. Both were children.
NGOs have made huge progress in education and protection since the time when albinism killings for witchcraft were rife in South Africa.
"There is more media attention than there was years ago," says Mbuli, "but in many African counties there are lots of unreported cases, many undocumented people. Only now are laws changing to protect people with albinism."
Albinism South Africa's Nomasonto Mazibuko says: "We have come a long way since international human rights movements started intervening in Africa, but it took until 2015 when the first recorded judgment of life imprisonment was given to the murderers of Thandazile Mpunzi [a woman with albinism who was killed in KwaZulu-Natal in 2015].
"Now we have so many young people with albinism who are models, singers, poets and Olympic athletes, like Hilton Langenhoven ... A lot of young people are confident with albinism.
"Yet still this year a family was brutally attacked. The children aren't buried because their body parts were sold in Swaziland."
Mazibuko says the main objective of activist organisations like hers is to help boost the confidence of those with albinism, to encourage and assist them to live in the mainstream.
"We have achieved a lot and people are paying attention and supporting us without feeling pity," she says. "To highlight the self-confidence of people with albinism is great. The young lady honoured by the queen of England shows we have made great strides."
She feels, however, that the government could do more to support the cause.
"World Albinism Day on June 13 should be put in the calendar of South Africa. Nobody must be left behind. In the past, people were not known and not counted. Even today, many people don't understand albinism, they look twice at us, three times ... And people with albinism also suffer far more from skin cancer, yet sun cream is still so expensive. This is something government can address."
STILL COMES AS A SHOCK
Mbuli says the progress is slow.
"Yes, people are used to seeing me around, but I wouldn't call that change. I really don't think there was a change in seeing me as a person who did normal things. That still comes as shock to people, until they get used to the fact that I am just like anyone else," she says.
Mazibuko and Mbuli agree that one of the biggest challenges is changing the perception that there should be special schools for children with albinism.
"We are not being affirmed," says Mazibuko. "Albinism is a manageable condition; the issue is inclusion. We encourage people not to send kids to special schools, which simply perpetuates segregation and non-understanding."
The impaired vision that comes with the condition is an excuse, says Mbuli, because her family encouraged her to attend regular public schools and she is flourishing at university, where she is studying chemistry and oceanography.
"Many children with albinism go to school but aren't integrated into their communities," she says, "so during school holidays the discrimination and stigma are a problem again."
Mazibuko says: "Communities are changing, but things don't change overnight. Empathy and patience are the only way."