This is a touching and inspirational story from Brooke Edwards who was born 3 months prem about 30 or so years ago. I hope you enjoy reading it as much as I did. It just goes to show how far you can go and what you can achieve with belief, strength and determination. Brooke, thank you for sharing your wonderful story with us.
Hello my name is Brooke Edwards and I’m going to give you an insight into how I have dealt with my disabilities.
My disability is called Retinopathy of Prematurity and I was born three months earlier. As you can imagine this was a shock to my parents. When I was born I weighed 990gram.
My right eye was damaged during birth so it has no vision in it at all. I can’t even see light or dark or black. There’s just nothing. My left eye was damaged because I was given too much oxygen. The blood vessels at the back of the eye became very big, pushing the retina off the back of the eye. The doctors told my parents that the only way to give me some sight was to do an emergency experimental operation. I spent 6 months in hospital. The doctors reattached a very small amount of retina and this gave me 5% or 3/60 of vision. Having too much oxygen also led to my ongoing disabilities. The doctors and my parents didn’t know that these would include damage to my frontal lobe. This affects my short term memory. Therefore retaining information is a problem. This links to my ongoing memory and learning difficulties.
At the age of one Mum and Dad sent me to The Royal Victorian Institute for the Blind, which now forms part of Vision Australia. I began learning the skills most little people pick up automatically through watching and copying others. Over the years they taught me many life skills by using touch. I learnt to use my hands as my eyes and also use the little vision I have to the best of my ability. When I started school at the R.V.I.B. the teachers tried to teach me how to read but I couldn’t see the letters properly. They began to teach me Braille and I remember saying to another student one day, “I don’t want to learn Braille. I can see, I’m not blind. Braille is for blind people”. He said to me “Well if you’re learning Braille you can’t read print and they might be teaching you so if you lose your sight you can use Braille”. Fear was all I could feel. I thought, “go blind later on.
No vision at all? That means I’ll see like my right eye. No sight at all. Not even black or light or dark, just nothing. That’s it I’m not doing this or using anything, if it means I will go blind later on”.
To me in my child like belief system that’s what I thought learning braille meant. That I would go blind. So there was no way I was tempting fate by doing anything that was going to lead to that. No one knew I felt this way. I couldn’t express my thoughts and feelings. The decision was made for me to back to read and write print. With the small amount of vision I had this meant learning to read and write became a very long and slow process. The cane represented the same thing for me that Braille did. Therefore I refused to learn how to use that as well. It has only been in recent years that I have learned the value of this tool.
While attending R.V.I.B. I felt that I was in limbo, living in a “Between World.”……Between the sighted world and the blind world and not being accepted in either. The kids that were totally blind considered me sighted and I thought my vision was pretty good, as I had nothing to compare it with. Even today there is very little understanding from the general public about the different levels of vision impairment (legal blindness). They do not understand that having a cane or a guide dog does not necessarily mean you have no sight at all, though there are those who do rely on them for that reason, but that your vision is impaired to the point that these thing assist you with the living your day to day life.
I was determined to be just like everyone else and did not want to miss out on any of the childhood experiences like riding a bike, sporting activities, roller skating and swimming. At the age of 6 I began singing lessons and have been singing in ever since. I entered many talent quests and have sung at weddings, birthdays and many other occasions. I did all the sporty challenging things and had as many bumps, bruises and scraped knees as my brothers.
In 1984 I competed in the Pan Pacific Games, (now known as The Southern Cross Games),in Melbourne winning medals in swimming and track and field. At the 1986 games in Sydney I didn’t do as well as I was homesick and feeling run down. My fear of being homesick again and my misplaced belief that I would have to stay in a straw hut stopped me from attending the games in Fiji.
My school days were very difficult. The learning problems, impaired sight and necessity of an integration aide meant I always felt that I was excluded from the mainstream schooling even when I was in it. I never felt that I was on the same page as the other kids in the class. All these things seemed to distance me from the other kids, when all I wanted was just to be one of the gang.
It was at this time that I pushed past my own limiting beliefs and those of other people, about what I could and could not do. As I grew bigger, so did my need for independence and the problems I faced, or so it seemed. I felt that if I had only one issue to deal with, life would be so much better and easier but being challenged academically just made everything so much harder. Even today this idea still seems to haunt me today. All I wanted to really do was discard my disabilities and to be like all the others without a disability. Much later in life one of the things I realized was that the weather had a major impact on how well I could see. On dull days it was much harder to distinguish things than on sunny days. I decided to leave school because I believed I was just repeating things over and over again. Though at this time my aides said I was retaining more than I ever before. I decided to go forward and not concentrate on what I couldn’t do, but learn more about what I could do and build on those abilities.
This was when I decided it was time I join the work force. The vision and learning difficulties made this much harder than I had expected it to be. Tafe courses for traineeships were and are, unobtainable for me. What I can do is still quite limited. I have felt very grateful though, that when I applied to be part of the Whitehorse Disability Awareness Project my disability actually worked for me not against me for a change. I have been with the project for approximately 18 months now and have shared my story with teachers, students, health care professionals and many others. I look forward to sharing my story with many more in the future so, should you wish to have access to this valuable program, please contact Whitehorse City Council.
In the workforce, as with ordinary life, communication plays a huge part in day to day life and body language makes up most of human communications. Eye contact, facial expressions, visual expressions/gestures (frowning, nodding) and recognition are all part of body language. It is in these areas I have major problems, as I cannot distinguish a smile from a frown without literally being in someone’s face. This in turn means my body language can be misinterpreted Eg: by not seeing someone’s signals or expressions they may think that I am ignoring them or brushing them off.
I have been strongly independent since I was little and I am still extremely independent today. I love to cook and share my culinary delights with friends and family (Killer scones included). I have a dog (not a guide dog) , whom I adore and walk on a daily basis and a beautiful ginger tabby cat. We share a cosy home with a lovely aspect close to my parents and public transport.
I was never wrapped in cotton wool…….. thank God. I had as many scraped knees and stubbed toes as my brothers, who believed I could do anything they could. Belief in others is a wonderful thing. Belief in yourself is life changing. I have learnt that determination, belief in yourself and a good grasp on reality are the keys to reaching for the sun.