by Kristin Darell (Prescott)
First published on The Life Kitchen website, December 2015
“Zara is blind.”
These words, told through my sister’s choking tears are etched in my memory. Hugging her I’d been stunned by how quickly the days of blissful ignorance that followed my niece’s birth had come to such a shocking end. Almost ten years later I realise I should have be shouting with joy. As much as we have guided her, that tiny little person has gone on to become our teacher and she only had to be herself.
When I first laid eyes on my niece, I’d been exhausted from a 5-hour dash from Canberra to the Mater Hospital in Sydney. I’d received a frantic call. My twin sister was in labour. I’d imagined so many things on that journey, but nothing could have prepared me for the first time I saw Zara.
Her hair was white as snow and the skin peeking out over the soft blanket was almost translucent. I was instantly smitten. But her greatest gift was still to come. It would be a few days before she would take her first peek over the blankets, but when she finally did, staring up from that pale baby face were the most incredible mauve eyes, like something out of a fairytale.
You see, Zara is a Person with Albinism, or as popular culture would tell you, she is an albino. She is as rare and special as the most precious gems in the world. Albinism occurs in only one out of 17,000 thousand Australians. My sister found out about Zara’s condition three days after she was born. The word albino probably conjures all sorts of images, mostly negative, about pink evil eyes, but nothing could be further from the truth. As we searched for information we found stories about children and adults all over the world living with the condition. Actually, more than just living, they were extraordinary.
Being different is a state of mind
“Being a person with albinism means that I have white hair and skin. It means that it’s hard for me to see things. It also means that other people see me differently,” Zara explained. “Strangers would say, oh there’s a girl with albinism, but my friends would say - there’s Zara. Everyone sees me differently. But I actually wouldn’t change anything about myself. It’s part of who I am.”
The lack of pigment that gives people with albinism their pale appearance is also one of the causes of vision impairment. Decreased visual acuity, photosensitivity and nystagmus (rapid, involuntary movements of the eye) all combine to impede sight.
“When I look at trees and bushes and things from a distance, it looks as if they are a big stick with a big green blob,” she said. “But when I go close up I can see them more clearly. It is the same with most other things.”
So medically, the doctors were right in the beginning. Zara is legally blind. She could have given up, but instead this determined young lady uses ever bit of the vision she has to live life to the full. From the moment she could crawl she was on the go, astounding family, educators and doctors at how able she was. In primary school and at home she uses special reading aids in order to continue in the mainstream system. She's even learning Braille.
Thinking back, I am angry by how focused the doctors seemed to be on what she couldn’t do. They were missing the point completely. All of us, children and adults, are only restricted by the limits imposed on us by others or those we impose on ourselves. Zara is proof, with passion and determination, there is always a way.
The only limitations are those which we give ourselves
Managing Zara's albinism remains a daily challenge for my sister, who has ridden a rollercoaster of emotions, including joy, frustration, guilt, anger and overwhelming pride for the young lady she calls her daughter. The one thing I am constantly in awe of though, is the way she has never set limitations in Zara's mind about what is or isn't possible.
Zara can and does do anything she sets her mind to: achieving national level in para-athletics at age 9, snow skiing, swimming, riding a bike, going on the flying trapeze, and writing stories. So when Zara decided she wanted to be an artist my sister’s response was ‘of course’.
“I like that you get to express yourself when you are doing artwork,” explained Zara. “You can make different pictures to do with your emotions. Sometimes I just draw a picture when I’m feeling something and it is like explaining my mood rather than saying it.”
So it begs the question. If Zara can do all that and she is legally blind, why do we spend so much time doubting ourselves, or avoiding taking risks?
Fear of failing, fear of being judged and even perhaps fear of the changes that success might bring. Children learn that fear from those around them. It can be a legitimate response to doubt but it is what we do with that fear that determines what sort of life we live. What’s important though, is that children are also given role models who have acknowledged their fears and overcome them. People they can relate to. People like Zara.
“If you were me, you could probably do it if you tried and if you really wanted to. I can just use my sense of where I need to put the different colours instead of focusing with my eyes. I can remember where each bit is on the paper and do it that way,” she said.
Dare to dream
So many times when I have felt fear or doubted myself, I am reminded of the challenges my young niece has already had to overcome in her short life. I ask myself, if she doesn’t give up, why should I? That’s not to suggest that fears and doubt are not legitimate emotions. They are. But not when they create unnecessary limits on what we dream to achieve.
Zara told me she used to feel very limited especially in athletics because she had to compete against all the other sighted kids. Instead of giving up, she embraced who she was and she hasn’t looked back.
“I now have my para-athlete classification and that allows me to compete at higher levels against other students with disabilities. I’m not limited now as we are all at the same level. I really want to become a paralympian,” she said.
Learn from life’s challenges - you might end up somewhere you never could predict.
Zara sees the world differently to many of us and perhaps that gives her a unique perspective. Maybe that’s why she sees no problem with becoming a star athlete or creating magical artworks even though she’s legally blind. Perhaps it’s time we all looked at life a little differently. Her artworks are a stunning testimony to what can be achieved if “can’t” is removed from discussion.
“Why don’t people just try things?” she asked me. “If I can do it and it’s hard for me, then why not try things too. If you really don’t think you can, you don’t have to do it, but if you think that you could do it and you’re just worried you might fail, you should have a go. There is a very good chance you would be able to do whatever it is.”
Never give up
Life is so full of “nos” and “can’ts” and “don’ts” that it can be hard to remember the limitless possibilities of the human mind and soul. Zara reminds me on a daily basis and now you know her story, perhaps she can inspire you too. So why not think of something you’ve always wanted to do and just give it a try. You may find yourself in a place you never expected.
I’ll let Zara have the final say.
“Trust yourself and don’t doubt that you can do things. Even if you don’t succeed the first time, trust that everything will work out in the end eventually.”