18 July, 2023
Stewart is running a Do It in the Dark campaign with the support of the Women’s National Kayak team to raise awareness for Retina Australia.
Hi Stewart. Thanks for your interest in running a Do It in The Dark (DITD) campaign for Retina Australia. What is your interest in supporting people affected by inherited retinal disease?
Both my brother and I were diagnosed with X-Linked Juvenile Retinoschisis at a young age. We both have been fortunate enough to not let our inherited retinal disease (IRD) hold us back. I wanted to support Retina Australia to bring awareness to IRD’s as I often get questions of “can’t you just get laser?” or “so what do you actually see?”
How did you hear about the DITD campaign and why did you decide to run an event?
I heard about the Do It in The Dark initiative from the Retina Australia website. I was looking for a way to get involved and spread awareness and saw this as the perfect way to do so.
Tell us about your DITD activity and who has been/is involved?
I work with the National Kayak Team as a Performance Scientist. Whilst leading into World Cup’s earlier this year I sat down with the Women’s team and went through who Retina Australia is, what they do, the DITD initiative and why I’d like to help out and get them involved too.
The team was really keen to have a go so we came up with a way to go through daily training with the DITD glasses which simulate tunnel vision. We found a day that fitted into their busy training schedule to have them warm up, paddle and train in the gym whilst wearing the DITD glasses.
Is it currently running and if so, for how long?
We currently have a JustGiving page where people can donate to Retina Australia which the team have been sharing on their social media along with some footage of them participating in the DITD activity.
What has the experience been for participants so far?
The team’s general feedback from the activity was they didn’t realise how much they relied on their peripheral vision in everyday activities as well as when they are paddling. Simple tasks like checking their phone took a lot more effort than it normally would.
- Alyssa Bull “…I think one of the hardest things is that you have to look around a lot. When you’re paddling, you rely a lot on your peripherals, so you don’t have those and you can’t see your watch. So when it comes to looking at stroke rates or what time it is when to stop the effort, no idea!”
- Alyce Wood “The black glasses that we put on today limit your vision to 5-10% which is wild! And so when we put it on when we were paddling, the biggest thing I noticed is that you loose your peripheral vision completely, and so suddenly you have to rely on all of your other senses. Obviously your hearing, your feeling…felt like we were in complete darkness.”
- Kailey Harlem “…it was very challenging…the biggest thing I noticed was lack of peripheral vision which for me I didn’t realise I used so much”
- Yale Steinepreis “…I found it hard to take in what’s around me…take in the water, take in the boat without moving my head a lot so was a great learning experience”
What is your hope from running this event?
For me, it was all about awareness, which I think we have achieved.
I’d like to thank both Retina Australia and the Team for taking the time to support and participate in this activity with such enthusiasm. It means alot to me and I’m sure to others too.
Today we’re here getting involved in the Do It in The Dark initiative by Retina Australia. We put some glasses on, we had a bit of tunnel vision. We jumped on the water in our kayaks, we’re in the gym doing some of our exercises and we really got a feel of what it’s like to live with tunnel vision.
Retina Australia is a charity that supports research information and supports those with inherited retinal diseases. Inherited retinal diseases impact
16 000 Australians and are the leading cause of blindness in working age adults.
We tried out the glasses which basically limits you to five to ten percent vision. It was very challenging. The biggest things I noticed was lack of
peripheral vision which for me I didn’t realise I used so much and just that feeling of that balance I didn’t realise how much the vision really impacts us.
We are very invested in um trying to raise awareness and maybe a little bit of money can be donated so keep an eye out for the link that’s going to go around. If you have any spare time and spare cash just head it over to Retina Australia, we’ll be greatly appreciated.
https://retinaaustralia.com.au/stewart-crewe-from-paddle-australia-runs-a-ditd-campaign/
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