A day in the life with Stargardt’s Disease
Living with Stargardt’s Disease for the past 10 years I have learnt a lot. You have to learn to constantly adapt to your surroundings, see things in a unique way and learn to read small print with technology that you could once read with the naked eye. You have to find new tricks and tactics to help you in your everyday life. Being diagnosed at such a young age I had no real perception of what my eye condition meant and for many years I struggled with rapidly deteriorating vision whilst trying to avoid coming to terms with my condition. I was in denial, I didn't want to be "blind", I didn't want to be “the blind kid”!
Caption: Matt De Gruchy walking towards the camera
Throughout my schooling years it was difficult to describe to my teachers what Stargardt’s Disease is. I think that the words "visually impaired" instantly has people assume "blind” or that you have no sight what so ever when in most situations that isn't the case. It was hard, I did feel like the odd one out and I did feel like the only blind kid ever to have attended school. The white board, the text books, the school work, you name it - it was all almost impossible for me to see! In the second half of High School I started learning how to use technology to my advantage. I learned to take a photo of the board and then read it off of my phone, how to use ZoomText on my laptop and to listen to audio books rather than read the hardcopy. As I started to feel more comfortable using these tools, and I was accepting of my condition, everything became easier! Plus, all of my grades improved, I completed VCE in year 11 and then switched to VCAL in year 12 where I won the excellence award for my efforts in that year!
Living in a small country town my family found it difficult with accessibility issues. At the time, there wasn’t a great amount of options available to vision impaired people in rural areas . I was fortunate to have a visiting teacher, Joanna Lenten, travel four hours return every fortnight to see me, organised through the Department of Education and Early Childhood Development (DEECD). Jo was amazing; I couldn't say a bad word about her! She worked tirelessly to ensure my schooling was stress free. Every time she came up I would have a new issue and instead of pulling her hair out, she dealt with it like a true professional! Jo and the team at DEECD do a great job and deserve credit for that.
It has been two years now since I completed school. I work as a supervisor in a retail store here in Horsham. The job is fast paced and every day is different to the last! My job involves working on a cash register, processing refunds and exchanges, stocking and displaying items and everything in between! I can’t see myself not working, I love to work and I am more than capable for the job!
Caption: Matt De Gruchy at work
It can be hard getting a job when you are visually impaired, as people can be judgemental and make assumptions based on stereotypes. I am a strong believer in ability not disability and I think that if someone who is visually impaired feels comfortable and capable to work, go for it! There is so much out there to aid you - technology is incredible! An iPhone has just about everything you need now. Most text and other visuals on computers can now be enlarged with apps like ZoomText and other tricks.
In the end, all of our journeys, from one visually impaired person to another, are different. We are capable and independent. However, blindness is a real thing and it needs more attention and desperate funding to ensure that future generations have a bigger and brighter future ahead of them!
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