It all started with the Christmas Tree biscuits. I was admiring them when the lady at my local bakery asked me, “How much can you see”?
As I had a pair of Vision Australia (VA) simulator glasses in my bag, I showed her.
She tried them on, looked around then piped up, “that’s not too bad then”.
Then the conversation got even more irritating as she proceeded to tell me about a 98-year-old man who had recently gone completely blind. She’d never once heard him complain.
This is the thing. I wasn’t complaining or asking for an opinion about my vision loss. It is my vision loss after all. But to her credit at least she finally asked me. She must have been curious for the three years I’d been going there and waited for her moment. And that turned out to be the moment I clapped eyes on the biscuits.
More about the VA simulator glasses
The VA simulator glasses were designed for the purpose of educating people about different eye diseases. They come in a range of designer styles,
- Diabetic retinopathy
- Macular degeneration
- Retinitis Pigmentosa
They are only available in canary yellow with the Vision Australia logo on the inside.
My style is the Retinitis Pigmentosa. The distinct feature of these glasses is the pinhole. Each pinhole represents 10 degrees of vision. “That’s not too bad then” when you consider normal eyes get an additional 170 degrees per eye.
They’re a good idea but ….
It’s not that easy to educate mainstream people about RP using simulator glasses. Only individuals with RP can truly understand what it’s like. They don’t have anything to compare it to because they don’t know what it’s like to have ‘normal vision’. On the flip side, people with ‘normal’ vision could never understand what it’s like to have irreversible vision loss because t’s not their lived experience. Standing behind a bakery counter wearing a pair of simulator glasses is not enough to make a visual assessment of RP. There is so much more to Retinitis Pigmentosa (RP) than looking through a pinhole as Kim Atchley Edmunds from the RP Family Support Group explains;
I find those “RP glasses” do us a disservice. They don’t show how it looks. It doesn’t show how our brain tricks us. It doesn’t show the island of vision some of us have. I wish there was a better way to show people. Kim Atchley Edmunds
The only way to get a basic understanding of the vision loss associated with RP is to spend time doing normal everyday tasks while wearing the simulator glasses. The simulator glasses can be informative when used this way. But unfortunately, RP is a complex condition that is not just about vision loss. Spending time wearing the simulator glasses may give an understanding why depression, anxiety, falls and isolation are also common in people with RP.
More quotes from my friends on RP Family Support Group
I am surprised at her comment ‘that’s not too bad then’. It’s a ‘pin hole’ of vision in those simulator glasses.
i have tried a pair of the ‘simulator’ glasses, and it terrified me, i couldn’t have walked around wearing them. Lynden Stehbens
If I could loan her my eyes have her walk around with RP eyes for a day and tell her omg you are right it’s not that bad right and see how she will feel with RP eyes all day long . The paper eye glasses you have don’t compare to how we really see. Lisa Munoz
I would of said ok thanks have a good day! As I am having one too! No one will understand our Vision loss or hearing loss because they do not have that taken from them just like I will not understand how they can see in the dark and what it looks like compared to me. Everyone does not know how to say things to ppl. Mel De La Rosa
Living with RP can be challenging at times. As an RPer, one of the biggest challenges we face is dealing with ignoramuses. Insensitive comments are not isolated incidents. They are common occurrences. After reading Melissa Malone’s post, it made me realise that we have a job to do and that is to educate, inform and show.
I’ve never had anyone say that to me and I can only imagine how that must have felt. I had a man swear at me and say that I should get hit by a car because he saw that I was using my cane to cross a one-way road while using my cane, listening for traffic and looking at my phone to get the bus using the bus tracker. I missed the bus, walked back, sat next to him and asked him what it was about my eyesight that I could answer for him. I showed him the app, explained my eyesight and what I can and can’t see and the definition of “legally blind”, and talked about his personal fears about losing his own eyesight. Afterwards, he walked me to the bus stop so that I could catch the next bus. I keep a picture on my phone of RP vision versus normal vision so that people can gain a better perspective. Melissa Malone
Thanks, Melissa, for turning one ignoramus into a decent human being.
When you look at it that way, “that’s not too bad then”.
Quotes are from the RP Family Support Group. I have been a member of this wonderful Facebook Group over three years now. It’s my ‘go to’ when I need to vent, offer support, and communicate with others like me.
Featured image: Vision Australia simulator glasses taken by author.