Knowing how much I can see, or what I see, is one of the hardest things for me to describe to someone. Whenever I’m asked if I can see a particular object or person, I’m happy to answer that question, but it would get very boring for them and for me, if somebody tried to ask me about everything I can see. It’s hard for people to understand because they can’t see through my eyes. I’m not aware of any technology that will really let someone see the world through my eyes. You could put a camera on my head and it would show you where I’m looking and what I’m trying to see, but it still wouldn’t show you how well I see what’s in front of me.
Earlier this year I came across a fantastic app for my iPhone called the AIRA Vision Simulator. Which uses the camera on my phone to simulate a variety of different eye conditions. The app simulates about a dozen different conditions, some of which I hear about often from clients at work, like glaucoma, macular degeneration, and retinitis pigmentosa. The app also has a bunch of conditions I’ve never heard about. I’ve used this app in many of my presentations to show people what certain conditions look like, and I’ve suggested it to staff members in seniors’ residences to gain a better understanding of what some of their clients are dealing with.
I wish it had cortical visual impairment (CVI) in the app because then I could show it to friends and family to help them understand my condition better, but sadly, it’s not included in the app. Not long after I had downloaded the app my wife went through it and chose a condition that she thought might be close, based on how I’ve described my sight to her. The condition she chose in the app was a decent starting point, but there’s still no substitute for the real thing.
Recently, a friend told me one of the things she appreciated after reading my book was that it gave her a better understanding of what I can see or not. She told me that before reading it she didn’t always understand why I was struggling to do certain tasks, or why I seemed to take longer to do things.
She’s not alone. I was at the ophthalmologist’s office recently and it always makes me chuckle when I’m doing the visual field test and the technician checks in to see if I’m okay because I’m not pressing the button when I see the sparks on the screen. I always have to tell them, “I’m fine, I’m just waiting for the sparks to show up in areas where I’ll see them.” I can’t fault the technicians for this. I’m sure they don’t have access to my chart to know about my condition before testing me. I just find it funny because it happens on nearly every visit to the doctor’s office. Perhaps I should have them read my book.
I’m glad technology like the AIRA simulator app exists, and I’m delighted that at least one person in my life understands my world a little better after reading the book.
When in doubt though, it’s good to ask. During my presentations, especially to health care professionals and people who work with vision impaired clients, I always encourage them to ask questions and observe. In my experience, most people with vision loss, myself included, are okay with being asked if we’re able to see something you want to show us, or perhaps ask us how well we see an object you’re holding, and we’ll tell you. We don’t want to play 20 questions any more than you do, but asking us these questions when you’re trying to help us with something is very appreciated.