Sarah Describes Her Life With Nystagmus

Diagnosed at six weeks of age, Sarah Maculans was born with Nystagmus and a Cataract in her right eye, which was replaced with a lens implant at five years of age.

‘it’s kind of like a faulty tv signal’ Sarah explains in her video.

through-out her life Sarah describes how she has noticed a difference in the way fully sighted and the visually impaired are treated.

“For some reason, I don’t know why, people want to paint us, for lack of better words a freak!” she explains.

During her time at school she was met with constant questioning about her need for sitting in the front of the class or having her work enlarged.

“no matter how many times I explained it, it was like it wasn’t syncing in”

‘it was like I was never really fully accepted’

Motivated by peoples lack of understanding Sarah decided to share her lived experiences online in the form of a YouTube channel and social media accounts.

“I’m not fully black blind. I do have some vision though it’s not the best quality. With the right supports and aids I can still live my life”

Sarah feels that Nystagmus doesn’t get the same attention as other visual conditions and is calling for more research to be conducted on the medical and the social side of the condition.

“We have challenges but we can get through them. We just need to think a little creatively in doing so”

Studying Social Work at the University of South Australia Sarah explains how she’s had the privilege of having access to great support in her life and wants to ensure this is available to people in the future.

“I want to empower those with or know someone with the condition to live their best lives despite the condition. We can achieve and we will!”