To be an outsider in a country as diverse as South Africa might seem strange but that has been the reality of South Africa author Terry-Ann Adams, a person living with albinism.
The Johannesburg writer is raising funds for a bioptic telescope via a BackaBuddy campaign. Having been born with albinism, Adams has struggled with low vision since a young age.
Adams was the first person in the family to have albinism.
“When I was born, the doctors told my mom I would have low vision and that I would be visually impaired for the rest of my life.”
Adams added: “I wore almost goggle-type glasses because of my eye’s sensitivity to the sun.”
The writer’s visual impairment has degenerated over the years. Having worn spectacles since the age of one, Adams was advised by an optometrist to visit a low-vision centre.
It was here that Adams completed an assessment which revealed the need for the bioptic telescope. The writer described putting it on for the first time as “life-changing”.
“I could finally see things! I could see across the room and read things.”
As a result of the low vision, Adams is not able to drive due to a lack of depth perception and no peripheral vision. The payment quote Adams received for the bioptic telescope is R30 000, which is where the BackaBuddy campaign originated.
Adams said: “This could mean so much to me. I would be able to achieve so much independence. I am legally blind and this would help me navigate life so much more easily.”
Adams completed a BA degree in humanities at the University of Pretoria, with a major in ancient culture studies and history. This was followed by an Honours degree in history.
Those Who Live in Cages was Adams’ first published novel, released in October, which looks at the lives of five coloured women in Eldorado Park, navigating struggles that have permeated the area and their lives.
Adams is married with a two-year-old son and experienced a stillbirth in the middle of writing the book.
“I challenged myself to finish the book so that I could dedicate it to her. At every stage of writing, I had different emotions.”
The author’s love for writing was born out of coming from a family of storytellers. Adams said, “No one can tell a story like an Adams”.
The intersection between being a person with albinism and being genderqueer in South Africa was traumatic, Adams said.
“Living within the feminine body has been more traumatic because I am a genderqueer person.”
Adams added: “It was very difficult for me to feel beautiful. I had a lot of self-esteem issues around how I look as a person with albinism.”
Over the years, the author has dealt with many stares from people in public.
“I can’t just walk down the road because my disability is one that you see. People like to stare, and that has been the root cause of my panic disorder, according to my therapist.”
Adams added: “Nobody wants to be stared at. It’s uncomfortable.”
The writer wants the public to know and understand that people with albinism are people too.
“I would rather have people see that this is a person. Before you start with your judgements or invasiveness – would you like that to happen to you?”
Adams added: “A bit of empathy would go a long way.”
September is National Albinism Awareness Month and Adams said this is a month to share what’s important for people to know about albinism.
“I want to change the narrative and celebrate us as a people. Reporting when it comes from a disability is always trauma-based and a pity party,” Adams said, adding: “I don’t want this month to turn into that. Our lives are not the sum of our traumas, it shouldn’t have to be.