Simon told his story during an interview. This is a transcript.
I am vision impaired as a result of Optic Atrophy. My optic nerves have been pretty much dead since about age seven, but up until 15 years ago I could see some vague images/broad outlines of large objects such as trees and buildings close-up with the outer corner of my left eye. That little degree of residual vision was most helpful. I found it much easier to get around. These days, all I have is some light perception, a shadow or two on the best of days, and the long mobility cane is my best friend when I go out independently.
I was born in Vietnam and came to Australia at the age of 13 with my parents, younger sister and two younger brothers. I guess my parents had no choice at the time. It was a matter of survival. My late father had to close his import/export business when the Communists took over Saigon in April 1975. He was in real danger of being seen as a “capitalist” by the new regime. The most common punishment for former business people, regardless of the size of the business, was total possession of their assets including living quarters, indefinite imprisonment and hard labour.
We were extremely fortunate that a business associate my father had in Adelaide was able to sponsor us to come to Australia under a humanitarian scheme. We are eternally grateful for the kind help and generosity of my father’s friends, in particular Robert Jose and Noel Roscrow, as well as the Australian Government for helping us out of Vietnam and giving us a second chance in life.
I fell in love with this country almost as soon as we arrived. I remember saying to my parents within weeks after we arrived “I’m not going back; Australia is home to me!” My parents turned to me with astonishment. They were speechless. One of the great things I noticed immediately was that the footpaths were flat and well-maintained, and there were pedestrian crossings for people to cross the road. For the first time in my life, I felt safe and free when walking on the street.
In the early days, my parents were quite homesick and were holding on to the hope that one day, the situation back in Vietnam might improve, and they would return to a life that was familiar to them. They spoke limited English and had little understanding of how things work here so they found it very difficult.
My wife Lily and I are fortunate enough to live in a beautiful area of Adelaide. There are many large shady trees and birds around. Our house is more than 50 years old but it’s our little piece of paradise and we look forward to returning home after work every day.
I work at Guide Dogs SA.NT as a case manager/social worker. I feel immensely privileged to be able to use my knowledge and experiences to provide assistance to others during times when they might appreciate some support. I have been working at Guide Dogs SA.NT since 1995. One of the main reasons I still work here after so many years is because of the wonderful people and the positive culture of the organisation. I work with many very special people; people with great passion and care who can appreciate what’s really important.
I completed a Bachelor of Economics and a postgraduate degree in Social Administration at Flinders University in the late 1980s and early 1990s. Study was extremely challenging because English was my second language and I wasn’t able to physically read print. I couldn’t have done it without the kind help and support of many people.
The importance of education and work
I think the reason I feel strongly about the importance of education and work stems from my upbringing. My parents saw education and work as very important in life. It was drummed into me from a young age that I needed to get a good education. Mum was always trying to arouse my interest in learning. When I was in grade one, she pointed out to me that maths was incredibly magical in how everything fits together beautifully. That made me very curious and I wanted to discover more about maths. The message was loud and clear: “You’ve got to work hard at your studies if you want a chance to make something of your life”. It was always a dream of mine to go to university, get a good job and make my parents proud.
I didn’t exactly enjoy going to school at first – the reality hit me like a ton of bricks. For kids in Vietnam school was like training for the Olympics. Competition was cut-throat and there was immense pressure to excel. There were tests and exams throughout the year. Every child had to satisfactorily fulfill the requirements of grade one before being admitted to grade two. I felt enormous pressure to perform academically and finish as high up in class as I could. I was well aware of what was expected of me and I didn’t want to let my parents down.
I became severely vision impaired at the age of seven. What caused my optic nerves to atrophy remains a mystery. I had to stop going to school for two years because I was simply walking into everything; people, polls, doors and windows. The early days were incredibly tough. There were no support services in Saigon for kids with vision impairment.
The doctors had never seen a case like mine and they couldn’t offer any constructive advice. When conventional medicine failed to help, my bewildered parents decided to see what alternative therapists may be able to do. I had two years of different types of alternative treatments. Various spiritual healers put all sorts of ashes and potions into my eyes trying to make them see again. Some of the treatments were terribly painful; quite torturous in fact. In Australia, those types of treatments would probably be banned, but I guess back then people just tried their best to help. Unfortunately, no miracle happened.
A dream comes true
I missed two years of schooling following the onset of my vision impairment. Eventually, I discovered that if I focused my eyes at a certain angle i.e. if I roll both my eyes to the far right, I could actually see a little of what was in front of me. This was a very helpful discovery, but it was no doubt very confusing for others around me.
Soon after we arrived in Adelaide, my parents and all my much younger siblings were off to English classes and school every day, but I was at home by myself with nothing to do for months. No one knew what to do with me. I was literally bored to tears. Eventually our family doctor referred me to Townsend School; now known as South Australian School for Vision Impaired Students.
It was absolutely a dream come true for me. When I was in Vietnam, after I lost my vision I often fantasised how wonderful it would be to be to attend a school where other kids were like me and having vision impairment was in fact “normal”. There was no such school for kids like me in Saigon. When I resumed my schooling, I found I couldn’t see the blackboard, couldn’t see to read, and I couldn’t see to write on the line. Worst of all, I was too embarrassed to admit I had a vision impairment. Most of my teachers couldn’t understand so they just decided I was lazy and not very bright.
My mother sent me back to school with a limited appreciation for how much I could actually see. She reassured me I had “weak vision”, and hopefully as I get older and physically stronger, my vision would improve. The lack of information and understanding nourished my keen sense of denial about the reality of my vision impairment, and this denial persisted for many years.
Lucky to be alive
When I was in Vietnam denial and lack of understanding about the nature of my own vision impairment nearly got me killed on the road many times. I had countless near misses with rickshaws and motorbikes on the road. For years, I was in total denial of the reality of my own vision impairment. Blindness was simply too frightening to contemplate. I desperately wanted to be just like other kids. Somehow, I managed to talk my parents into letting me go to school and come home by myself which involved crossing one very busy road.
One day when I was about 10 years old on the way home from school I was crossing a busy road and got absolutely cleaned up by a cyclist. I didn’t hear the bike coming. It was on my blind side and I had no idea I was going to be hit. All a sudden, I felt the back of my head strike something hard. When I came to my senses, I realised I was lying flat on the road looking up at the sky. I jumped up immediately, picked up my bag, and ran home as quickly as I could. My mother cleaned and bandaged up some cuts on my arms and legs. When she asked me what happened - I didn’t want her to worry or stop me going to school independently - I told her I just got a bit careless and had a fall on the school playground.
I had a splendid time at Townsend School. I thought “Wow, this is great!” I could at last participate on a much more equal footing for a change. My favourite subject was P.E. (physical education). We had a great teacher, Mr Peck, who insisted everybody had to have a go at everything including running and gymnastics.
I could hardly speak English for quite a long time after arriving in Australia. It was awfully frustrating, and running was a very helpful way for me to get rid of my frustrations. I soon discovered I was able to run a bit, and that was a much-needed boost to my self-esteem. With Mr Peck’s support and encouragement, I became actively involved in blind athletics as a track and field athlete. This brought me many highly memorable experiences. I took part in many state and national blind athletics championships, and I participated in the Far Eastern and South Pacific International Competition (FESPIC) Games in Indonesia in 1986 as a member of the Australian team, and was lucky enough to win a gold medal in the 1500 metres and a bronze medal in the 400 metres track events.
I was also lucky enough to be a torch bearer for the 2000 Sydney Olympics Torch relay. The excitement of holding the Olympic torch high above my head; running along the streets of Adelaide CBD with my brother Charles as my sighted guide is an experience I will never forget. The torch relay made me feel very much included in the life of this beautiful country and a proud Australian.
Transition to mainstream school
I enjoyed my time at Townsend School but before long my appetite had grown to improve my English and learn as much as I could. Many students my age were being integrated out to mainstream high schools, and I wanted to go with them. It didn’t happen the first year and I was very disappointed, but the second year, when my teacher realised I was really keen, they let me try it out. At the time I could still hardly speak English. I was a really long way behind. By the age of 15, my teachers tentatively let me try undertaking maths’s, science and English at Year ten level at Mawson High School, which was, at the time, right next to Townsend School.
I was going back and forth between the two schools during that year. To everyone’s surprise including me, I ended the year with distinctions for maths and science, and a credit for English. I was integrated to Mawson High full-time in the year after that. I was extremely grateful for the support of all my teachers – the mainstream class teachers as well as the visiting teachers from Townsend School who made sure my vision impairment related needs were met as far as practicable. I had access to books on tape and some course materials in large print. I was also excited to discover there was a vast library of talking books on tape.
The experience of university
When I went to university, I found everyone was supportive even though at that time students didn’t have access to as much support as they do now. Disability liaison officers did not exist in those days, But the Royal Society for the Blind (RSB) had a student support worker, and they did pretty much what disability liaison officers would do these days. They showed me how to go to meet the lecturers before the commencement of each topic to talk about my vision impairment related needs, introduce myself, tell them what my needs were and what explain would be helpful to me, for example, being able to have their recommended reading lists as early as possible. The RSB provided me with a small team of volunteer readers. When I got the reading lists from the lecturers I would go to the library, get some assistance to get photocopies of readings, go to the bookshop and get the books I needed, then send them out to the various readers for the materials to be read onto tape. Eventually the readings on tape would come and I could start my studies.
The first couple of essays were very difficult. I was using a little tape recorder to listen to the reading material. Even though I made it to university, my English was still quite limited. The readings contained many complex and long words I’d never came across, so it was very difficult.
Everyone at home came to my rescue. My poor younger sister and brothers who were still in primary school also did a great deal of reading for me onto tape. I’m forever grateful for the many hours of hard reading my dear sister Aimee did for me in those days. Without her help, I wouldn’t have been able to get through those early years.
At first, there was no talking computer. I had to type out my essays using a manual typewriter. I typed out my essays without being able to read it to check what I had written. If I made a mistake, it was very difficult to correct. I had to ask my Dad to liquid paper it out for me. My Dad had very limited English, so it was an extremely slow and laborious task. Eventually when I had the use of a talking computer, it was much easier, and my marks improved significantly.
When talking electronic dictionaries became available, it was absolute Heaven! Up until that point, all I had access to was a large print version of the Little Oxford Dictionary. It was extremely bulky and heavy in physical dimension, but was rather light in terms of content. With the aid of the strongest hand-held magnifier I could obtain at the time (the 22x Peak-Lube), I used to spend hours having my face millimeters from the pages of the Little Oxford trying to look up words as part of my studies, but to my great disappointment, I discovered many of the words I needed to find were not actually in the dictionary. My talking Franklin Language Master Special Edition was expensive; it set me back by $900, but to me, it was worth a billion dollars.
Never give up
Winston Churchill once said “When you are going through hell, keep on going. Never, never, never give up.” Living according to this motto helped me through a lot of tough times. When I was at university and I had a problem I never gave up hope of getting it resolved. I’d think, “Well, who can possibly help?” I learned very quickly that in order to survive it's important to be outcome focused. Getting a pass was my goal, and I did everything within my capacity to achieve that outcome. I was never too shy to access available resources and support. I also used to encourage my peers to talk to their lecturers and tutors if they didn't understand anything. Don't just worry; go do something about it; see if you can get some help. I also used to make use of counseling and learning support services on campus; whatever I thought may potentially help me, I would give it a try.
Poor perception of employability
I did a Bachelor of Economics; it was really a practical necessity. I enjoyed maths and with my limited English I found that once I had learned the set of jargon economists use I was able to understand the course material relatively easily. I did quite well, and by the time I finished my degree, I had acquired three academic awards, which included equal top of class in second year economics, and top of class in economic history in third year. That was a much needed boost to my confidence. I was offered research assistant jobs but at that time I couldn’t really see how I could succeed in those jobs, as they involved researching and writing papers for senior economists with tight deadlines. I couldn’t see how I would manage. These days there are reading machines that are like a scanner attached to a computer, and you can get it to scan a page and read it to you with a near human voice. Twenty years ago, the first reading machine I tried was at the State Library, and it was the size of a large washing machine. It was able to read its test page quite well, but it didn’t manage to read anything else.
Despite the fact I did quite well in my first degree, I still had little confidence about being able to get a job. I doubted my own employability. I had the option to undertake honours studies in economics, but after having a careful look at the course, I decided against it. I discovered the higher I went in the study of economics, the more mathematical it became. Although I enjoyed maths because it was very visual, I found that without being able to see the complex equations and diagrams on the board it became more and more difficult and frustrating. In addition, as my required readings became more complex and mathematical, it became increasingly difficult to find volunteer readers who were prepared to read them onto tape for me.
Introduction to the workforce
I didn’t get a chance to undertake any work experience while I was at high school; it was not part of the school curriculum back then. At the end of my economics degree I thought “I’ve never been in the workforce. What is it like to work? Who would employ someone like me?” I couldn’t see past my disability. I didn’t know how employable I was. I didn’t know how I would manage.
I was lucky enough by chance to come across a friend who was also vision impaired. He was about to complete his social work degree. He gave me information about the course he was doing. The idea of social work immediately struck a chord. I had a feeling social work could open up some doors for me. I was also attracted to one of the requirements of the social work course that every student had to undertake two, 70 day fieldwork placements under supervision. I thought, “Well, that would give me a chance to see if I can work and cope out in the real world.”
My first field placement was in the intake and personal counseling team at Centacare. I found I had to quickly learn how to communicate more effectively with people at different levels. I got a tremendous amount out of that placement. The first person I really helped was myself.
A sense of adventure
As my vision has deteriorated over time, many everyday tasks have become incrementally more challenging. It takes more motivation and effort to get things done and to get to places. Fortunately, I’m blessed with a keen sense of curiosity and adventure. I enjoy a challenge; learning and discovering new facts about myself, people, places; I love giving things a try and see what happens. I’m also determined not to let my blindness become a barrier that stops me from getting enjoyment out of life. I have my good days and bad days. I access support services when required in order to help problem solve or to accomplish what I need to do.
Suggestions for others
Set realistic goals
I would encourage everyone to have a dream; to dream the sort of life you wish to have. A good life may mean different things to different people.
It’s important to have dreams and goals that are realistic and achievable. Don’t invest your precious time and energy toward something that’s not achievable. In order to have a chance to succeed, be prepared to work hard and do what it takes to keep moving towards your goals and dreams. Remember to enjoy the journey. We often don’t get to the goal or the destination we planned, but enjoying the journey is a big part of life.
Be open to learning new things
I have found that continuously learning; trying my hand at something new and keeping my mind active has been most helpful. It helps me to keep feeling fresh, vibrant and interested in life.
Apart from work, I’m currently enjoying learning to play the ukulele and African drumming. I do Tai-Chi exercises every morning as soon as I get out of bed. My brother Charles has been gradually teaching me some new moves.
A while ago, Lily and I had a fun time learning ballroom dancing. Although we don’t do it on a regular basis now, we can get up and enjoy a dance or too when there is an opportunity.
I also try to stay fit, and I ride my exercise bike several times a week. I am currently a member of the RSB’s tandem cycling group and will be riding in the 46km community challenge as part of the Adelaide Tour Down Under event in 2013.
Find out what you enjoy
These days when I’m out, if I don’t hear or touch something with my cane I don’t know it’s there. I wouldn’t even know people are around unless I hear their footsteps. Lily loves going on holidays and exploring new places. When I had a little more sight, going away was more enjoyable. These days, I quite enjoy spending time at home, doing things around home. However, I have noticed some people who are blind seem to enjoy travelling, so I’m determined to see if I can find a way to get more enjoyment out of it too.
Learning from others
Recently, I was feeling rather tired and bothered. Little things were beginning to irritate me. I went onto the 100 Leaders Project website and read several of the stories that have been posted. All of a sudden, I noticed I was feeling a whole lot different. I was able to look at things with a new perspective. I love listening to stories shared by other people because I can learn a great deal from them.
I also attend state and national conventions run by Blind Citizens Australia whenever possible. I find many people with disabilities to be inspirational, such as Kelly Vincent. I marvel at how these leaders function; what they manage to do in spite of their disabilities; how they obviously have so much motivation, determination and grit. I get really inspired by people like that.
Cultivate a keen sense of adventure
Helen Keller once remarked “Life is a daring adventure or nothing.”
© Simon Wong 2013 Except as provided by the Copyright Act 1968, no part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means without the prior written permission of the author.