Albinism is a rare disease caused by the absence of melanin, which affects about one in 20 000 people in Africa. Albinism causes great difficulty among school-going children in particular, because of the risk of skin cancer and poor eyesight, which affects their ability to see what is written on the blackboard and therefore to keep up with the class. In the rural areas of Africa, PWA are hidden away from society for fear of being ridiculed, labelled a curse and, in some shocking cases, murdered or exhumed from graves for body parts.
Over the last five years there has been a growing awareness of the fight for PWA with the intention of transforming this meaningless discrimination into acceptance and inclusivity.
A Miss Zimbabwe Albinism initiative, the first ever beauty pageant for women with albinism, was launched in March 2018 by Brenda Mudzimu of the Zimbabwe Albinism Trust (ZAT). It created a platform for women living with albinism to feel beautiful and become confident, and “to speak out, be heard, fight back and stand up for themselves, so the challenges they face do not die inside their hearts,” Mudzimu said.
The event has sparked widespread Pan-African interest, which Mudzimu believes will necessitate a Miss Albinism Africa in the near future. As a trained nurse, the 33-year-old has dreams for something even bigger – an initiative that can combine her two passions of health and beauty. The 2019 event has already expanded to include the participation of men.
Mudzimu explained, “Raising awareness through modelling is powerful to the younger generations. I could see the change for people with albinism. Those people who participated gained confidence and the knowledge that they can express themselves like anybody else. We are raising awareness that beauty is not skin deep, but inside we are beautiful, intelligent and can do amazing things.”
ZAT partnered with Khulisa Social Solutions in 2018 to add a Dare to Dream story-telling and resilience programme to the pageant. The goal is to help create a sense of a real activism in the winners and start a movement of PWA who have a story to tell.
Champions for human rights
Women with albinism regard themselves as double victims of human rights abuses because they are both disabled and gender marginalised. However, their experience of discrimination and their knowledge of human rights have allowed them to empathise with and include in their activism other marginalised groups and women who have been pushed to the peripheries and silenced.
Women with albinism regard themselves as double victims of human rights abuses because they are both disabled and gender marginalised.
Ingrid Bame, founder of The I Am Movement, explained that women with albinism are spearheading change in the struggle for human rights and, in particular, in the long-term social and economic inclusion of all marginalised groups.
“We are a united front because we cover the whole spectrum of the human race and we have an overview of human rights. We are able to fight so many injustices, like gender-based violence, the lack of job opportunities and discrimination. There is a great need to awaken this consciousness across the continent and to enable the many people with albinism to self-actualise and take control of their lives,” she said.
“There is a great need to awaken this consciousness across the continent and to enable the many people with albinism to self-actualise and take control of their lives.” – Ingrid Mbane
“South Africa can play a leading role in spearheading such initiatives in Africa. The country has many PWA who have come out of our shells and are living the best version of our lives. We have models, lawyers and nurses. These achievements have a great effect on people in the next generation born with albinism. We have come to a shift – or the dawn of a new era – of PWA who will be able to come out with their story and gain greater confidence in themselves.”
Joining a global campaign
The PWA movement has been gathering speed since it joined the global 16 Days of Activism campaign, championing their own narratives under the slogan #hearmetoo. It has evolved into a “I exist because I am” movement to be launched on International Social Justice Day. A two-day summit will be held to demonstrate how social and economic inclusion for marginalised groups can be achieved through dialogue, advocacy and education.
Regina Mary Ndlovu, a celebrated activist and motivational speaker, is the face of the campaign. She has successfully used her harrowing personal story of rape, discrimination, kidnapping and attempting suicide to motivate others.
She said, “I realised that I was too heavy, that I could not carry this load anymore. I could not be anything until I dropped all that down. Albinism in the new era means that every person must realise that when you impact on PWA you are putting bricks and stones on top of them, so they can’t get to the other side. You will not get to your destination if you don’t put those heavy things down and take that first step towards your freedom.”
The campaign has been joined by fellow Southern African activists such as talk-show host Esther Motlhabane, founder of the non-profit organisation Holding Albus; alumna of the Oprah Winfrey Leadership Academy, Abongile Xhantini; Zimbabwean-born model Simba Gozo; and 10-year-old Hannah Tshuma of the We Are People Foundation. Mudzimo is leading the Zimbabwean contingent, which includes poet, musician, law and political science graduate Rufaro Martin Chinyanga and 2018 Miss Personality winner at Miss Albinism Zimbabwe, Jennifer Madiriza.
Under the sun in Tanzania
Tanzanian organisation Under The Same Sun (UTSS) has successfully promoted the rights and welfare of PWA through advocacy, educational institutions and empowerment in Tanzania since their founding in 2009. They are being represented by a group of activists that includes Kondo Adui Seif from the Advocacy and Public Awareness Office.
The vision is for innovation, to propel PWA to reach their full potential and for long-term inclusion in the economy. The programme is expected to expand across sub-Saharan Africa and include a broader spectrum of people with disabilities.