PULSE
People with albinism say their wide experience of social injustice and their representativeness of all humanity naturally place them at the forefront of the campaign for human rights
Sharing their stories help people with albinism cope
People with albinism (PWA) have called for social and economic inclusion in the 16 days of activism global campaign against gender violence, a yearly event that takes place from November 25 to December 10. Over the year the movement for albinism has gathered force and pace. In March 2018 Brenda Mudzimu of the Zimbabwe Albinism Trust launched Miss Zimbabwe Albinism, the first beauty pageant for women with albinism. The event went viral.
“Raising awareness through modelling is powerful to the younger generations.
“We’re teaching people with albinism who are discriminated against by the community to fight back and stand up for themselves,” explained Mudzimu.
Founded in 1997 by Lesley Ann Van Selm, Joburg-based NPO Khulisa Social Solutions has offered ongoing support and facilitation to the trust, in the last year. Together they’re using the Khulisa solution of storytelling as a means of rehabilitation and selfrenewal to create a safe space for dialogue and capacitate new voices with the tools and skills to heal and catalyse acceptance in the communities.
Telling stories
The Dare to Dream storytelling circle, a pioneering resilience programme, was launched in September in Zimbabwe, offering the 21 beauty pageant participants the space to listen and be heard. Half had never told their stories before.
This programme expanded to Joburg during the 16 days of activism campaign, and is planning to go to Tanzania, Uganda and Congo.
“I could see the change for people with albinism,” said Mudzimu. “Those people who participated gained confidence that they can express themselves like anybody else.”
Miss Zimbabwe Albinism has received requests from 15 African countries to work together which has necessitated a Miss Albinism Africa pageant for next year. These events raise awareness and educate on some of the strange beliefs, such as body parts of PWA cures HIV/Aids.
Ingrid Mbane, founder of The I Am Movement, says: “We have come to the dawn of a new era of PWA with confidence. Albinism is a disability that affects approximately one in 20,000 people in Southern Africa.
But these statistics are not accurate. In the rural areas PWA are hidden because society ridicules them. In classrooms they can’t see what is written on the blackboard and they can’t afford sunblock. There isn’t enough being done by government, and organisations to propel PWA to their best potential.
“PWA in urban areas have been able to work with people of different ethnicities and create the best version of their lives. There are professional models, lawyers and nurses absorbed very successfully into the mainstream economy.”
Harrowing story
A number of albinism activists have gathered, including Zimbabwe-born model Simba Gozo, talk-show host Esther Motlhabane, founder of the nonprofit organisation Holding
Albus, an alumnae of the Oprah Winfrey Leadership Academy, Abongile Xhantini, and Regina Mary Ndlovu, a celebrated activist and motivator.
Ndlovu has used a harrowing personal story of rape, discrimination, being kidnapped and attempting suicide to motivate others to “put down their baggage and take their first step to freedom”.
Singer PJ Powers, the global ambassador for Khulisa, has been inspired to write music for this movement. She said: “We have to educate the people to look PWA in the eye and realise they are strong, they are a force. It is lack of knowledge and fear that cause people to want to shut their eyes. It is time to open the eyes and embrace.”
Women with albinism are sometimes double victims of humanrights abuses. They are not only gender marginalised but also fall into the disabled category. Their overview of human rights has allowed them to successfully empathise with and include other marginalised groups and women who have been pushed to the peripheries and silenced.
Mbane explains: “We are the united front because we form part of the whole spectrum of the human race. We are able to fight so many injustices, like gender-based violence, lack of job opportunities and discrimination. We have an overview and could be the people who spearhead the change we need for human rights.
“There is a great need to awaken this consciousness across the continent and enable many people with albinism to self-actualise and take control of their lives.”
Lobbying companies
The PWA inclusivity campaign is built on the theory of resilience-development storytelling and uses multiple platforms including mentorship, entrepreneurship and job creation to provide platforms for long and lasting change.
“We are lobbying companies to change their employment strategies and train PWA as restorative justice mediators who will be appointed and paid to mediate where conflict arises,” explained Van Selm.
The 16 days of activism campaign used the slogan #hearmetoo as a global platform for PWA to champion the telling of their own stories and narratives and raise awareness of human-rights violations.