‘Everyday albinism heroes’ in spotlight
SEPTEMBER is National Albinism Awareness Month in South Africa. Motivational speaker Terry-Ann Adams shares her story about growing up and coping with albinism.
“Look inside yourself and see what it is that makes you different. That is your wand, your staff, your sword. Embrace it, breathe it in. Everyone is different in some way, and that’s okay because if we were all the same, life would be boring,” said Adams.
Born with albinism, Adams said these are just some of the words she shares with people when she tells her story of how she coped with discrimination.
Adams, 22, is a model, radio presenter, disability rights activist, a motivational speaker and a student at the University of Pretoria. She is studying for her Honours degree in heritage and cultural studies in history.
National Albinism Awareness Month is an opportunity for “everyday heroes with albinism to receive a platform. It’s a month where our beauty will be shown and where we have the opportunity to voice our concerns”.
There are many misconceptions around who people with albinism are, Adams said. People, she said, “believe people with albinism have supernatural powers, like disappearing after death or being agents of magic or good luck”.
This kind of wrong thinking had to end, she said. “We need to dispel these myths by showing that albinism is caused by nothing more than genetics. And by showing that we, too, are people.”
There are nine recognised types of albinism, with two additional albinism-related conditions, explained Adams. She hasn’t gone for genetic testing yet, but said she suspected that the type of albinism she has is called Oculocutaneous albinism type 1A (OCA1A), which means that “there is no presence of pigment”.
She noted that with other types of albinism pigmentation “may vary in degree”.
“I always knew that I was different because I looked different,” said Adams, who grew up in Eldorado Park in Johannesburg.
“Growing up was hard because kids did not understand why I was different and people don’t like what they don’t understand. I got bullied a lot, beaten up, teased, covered with charcoal and spat on.”
Being discriminated against has strengthened her. “It was a hard, unnecessary experience, but it was not void of lessons that I had to learn about humanity,” she said.
The majority of the challenges Adams has faced “stemmed from trying to adapt to ‘normal’ society”.
“With albinism being seen as a social evil, I had to learn how to not be an outcast. I triumphed by overcoming my insecurities and by not seeking the approval of others,” she recounted.
She revealed it was only through telling people that she couldn’t see the board, or informing them that the light was too strong for her, that she was able to get over her “embarrassment and shame”. This, for her, “was the greatest triumph of all”.
Adams became a radio presenter at the University of Pretoria’s radio station, Tuks FM, in 2012 when she took up a friend’s dare. That friend thought “I would not make it past the selection process”, she chuckled. “Little did I know that it would change my life forever”.
Adams and a colleague hosted the station’s first news and actuality show, The News Platform. They received two MTN Radio Awards nominations in 2013 for best news and actuality presenters, and best news and actuality show. She left radio to focus on her academic studies.
Being a radio presenter made her think about disability rights as she realised that there were “many other children with disabilities who will never get the support in the workplace” that she received.
“I also thought about my unborn babies who may be born with albinism and what quality of life they will have if the world does not change,” she said.
Adams won the Tributes 2015 Excellence Awards in the media and communications category last month.
The award, she said, was a career highlight because it meant she was “recognised as a broadcaster but also as a disabled person who has achieved despite my disability”.
She is the official Face of Fability, a company that focuses on providing opportunities for persons with disabilities.
Adams said Fability “opened a whole new world” for her.
“I have never seen myself as beautiful because I was constantly told by tormentors that my albinism made me ugly. When I saw the pictures from my first shoot, I cried because I couldn’t believe it was me.”
She enjoys modelling because “it’s beautiful because for a moment you get to be anyone you want to be”.
As a result of her albinism, Adams has low vision. She has been diagnosed as legally blind.
“I have photosensitivity and nystagmus due to the lack of pigment in my eyes. Because I can’t handle bright light, I usually squint in those situations,” she said candidly.
Glasses “makes
things clearer and help with the photosensitivity”, but that is about it, she said.
“I walk with half-closed eyes because of the lights. It’s a bit hard to navigate, but I have learned to adapt. I can see silhouettes, but I cannot see details.”
Adams, who reads her mobile phone with the device centimetres away from her face, said she can see words but not what they actually are – not until they are in close range.
She enjoys listening to music, looking at photographs, and relies on her memory and other senses to overcome challenges of “remembering where things are and how to get to places”.
Her dreams of driving and becoming independent were dashed when an optometrist cruelly laughed at her question of whether she would be able to drive or not.
“I was very angry when I heard that I would never be able to drive, because in that moment I knew that I will forever have to be dependent on people.”
Since then, she has learnt that “everybody is dependant on somebody in some way or another”. Using public transport has enabled her to be “fairly independent”. Adams dreams of seeing South Africa “make inclusive education a reality so that children with disabilities have an equal opportunity to achieve what- ever dreams they may have”.
She said she would like to step into the educational path and “eventually develop a history curriculum for children with intellectual disabilities”.
National Albinism Month coincides with National Heritage Month, which sees South Africans celebrating their rich heritage. Adams said that through her work she wanted to “show that persons with albinism are beautiful and not objects of fascination”.