Life Without Limits

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Edan got his very first camera when he was 20 years old at Christmas time from his uncle. To him, it was an amazing camera. Edan claims that it still is and it is one of the best cameras he has ever seen. It was not a DSLR, just a typical digital one. Despite it being big like a brick and heavy, he loved it. “Each camera has its own personality. That camera was beautiful. It just did the picture perfectly,” he said. For the next 5 years, he took many shots of his friends and things in the environment especially of flowers. Eventually, he fell in love with photography.

Edan thought it was time for him to purchase a newer camera as the first one was getting oudated. He purchased an Olympus camera. To his disappointment, the picture quality of the new camera did not match his expectations. It was just not the same as his first camera. He lost it after about 2 years. He did not care about his loss but missed having a camera with him. During that time, he also set up a photography website and sold a few photos and one photo for a book cover. That was when Edan realised he could go further with photography. He did some research and saved up money to buy a Canon DSLR camera which he uses currently. From then on, he became a professional photographer.

Edan won 1st Place in the NSW North Coast TAFE Photographic contest in 2010 for his photograph titled “Green smiles” which features a gecko smiling. He took a photo of a gecko in Wellington Zoo and won $100.

Edan is an excellent professional photographer among many others. But what sets this man apart from other photographers is that he has Usher’s syndrome. He was 13 years old when discovered he had Usher’s syndrome. One weekend, his mum invited 3 of her friends over for dinner and they all brought their kids along. That night the kids were playing “Torchlight” where the person with the torch was “It”. Edan happened to be “It”. He closed his eyes and counted while the other children ran off. When he was ready, he set off to catch the children. While he was running, he tripped over something in the garden and his eye was nearly pierced by a tree branch. That petrified him and he realised that he could not see properly at night. He shared his frustrations with his mum who explained that he had Usher’s Syndrome. He learnt that Usher’s syndrome causes deaf-blindness and multiple symptoms occur simultaneously -night blindness, Retinitis Pigmentosa which is gradual loss of peripheral vision eventually leading to total blindness, and deafness. When Edan understood his condition, his world came crashing down on him when he realised he would go blind one day. For the next 3 years, he entertained thoughts of taking his own life. He also got involved in drugs, smoking and alcohol to escape the pain.

Edan has led a full life. He has lived in different countries mostly in Australia, New Zealand and Germany, going back and forth especially between Australia and New Zealand over the years. At the age of 9, it was in New Zealand where he first met older Deaf people who used New Zealand Sign Language. The experience was eye-opening as he started to pick up sign language and Deaf culture and discovered his Deaf identity. He experienced much academic success at school and was ahead of his peers academically. He has friends from all walks of life and studied different courses. All his varied experiences have helped him learn “how to be a people person” and to fit in anywhere. He said that the only drawback of moving several times was leaving friends behind and missing out on what happened in their lives after he moved. Edan credits his mum, Susan Chapman who is currently an interpreter in Byron Bay for his success. “She supported me through the years finding the right placement for me in schools that met my needs, with Signed English. Later, she learnt to sign to communicate better with me.”

When he moved to Melbourne he wanted to achieve something with himself before he went blind. When he was 18, he felt there was no point in doing anything because he was going blind. However, by the time he was 25, he realised he could still see. He berated himself for being so silly for wasting all those years away. This motivated him to start filming himself and make videos to see if he could cross the boundaries of language. He showed them to hearing people and asked if they could understand him. His goal was to sign without needing to explain to hearing people and they understood his videos easily.

During an interview with Deaf Arts Network, Stephanie Linder raised the issue that people might wonder how Edan manages to take photographs with his limited vision. Edan pointed out that he could see as much as a camera could capture and that using a camera was “a perfect extension” of his situation. The camera “has taught him to use his vision properly” and to develop an eye for detail such as light and colours. He has developed a greater appreciation for what he can see round him. “The camera and I teach each other. It’s a relationship,” he adds.

In 2012, he got the job of official photographer at the Australian Deaf games in Geelong. It was the biggest job he ever had as he took about 7000 photos over 7 days. He also landed a job at the Victorian College For the Deaf (VCD) and worked as a film teacher and teacher aide. Jeremy Brett, leading teacher at the school commented that he and Edan had a great working relationship. “We have the utmost respect for each other. He assisted me with a huge film editing task with footage I shot in the Kimberleys in an Aboriginal community with Deaf students. I owe him big for that.” Edan’s life has impacted Jeremy positively. “Edan is an inspiration. Despite his degenerative Ushers, he has mastered English language which is rare for a Deaf person. He follows his passion which is film and photography and nothing will get in his way. He has to be admired for that. Also the quality of his work is outstanding, very professional. His ongoing positive encouraging mindset is very inspiring!” Jeremy adds. Edan decided to leave his job at VCD last year as his heart is set on achieving some things before he loses his sight.

In the future, Edan hopes to have a photography exhibition of his works. He also wants to explore different things that he can envision doing like massage and pottery – tactile activities. He has also started being involved in the Deaf-blind community. Learning Braille is a must because he loves reading and does not want to sit around and be bored to tears. “While it will hurt to give up TV series, I cannot give up my love for reading. I will go crazy”, he says. He has loved books from the age of 3 and has dreams of writing a book about his life. He also plans to make a Vlog by filming himself, not to boast about his achievements but in the hope that his story will inspire other people with Usher’s syndrome to achieve something with their lives.

Edan adopts a “life without limits” mentality. He is an intelligent man with a larger than life personality who uses the limitations of his Usher’s Syndrome to his advantage that makes him an excellent photographer and film-maker. Although the effects of Usher’s syndrome can be devastating, Edan does not allow it to hinder him from achieving his dreams and growing as an individual. Without the right support, people with Usher’s Syndrome can experience a large impact on their mental health such as isolation from other people, depression, anxiety and low self-esteem. Some Deaf-blind people adapt well to the Deaf or hearing communities while others do not. Edan is a well-adjusted individual who has demonstrated resilience despite his condition.

His motto: “Never Give up”.

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3 thoughts on “Life Without Limits

    • Yes it is inspirational. Thanks to Edan who was generous in giving details in the interview. His life will inspire many people. 🙂

  1. Great post Phoebe. (I googled Usher’s Syndrome as I’d never heard of it.)

    Edan has certainly had his ups n downs and you’ve documented that well. Nice work!

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