“So Rhianna, what can you see?”
“Actually, I’m totally blind.”
“Oh. But, you can see something… right?”
Aside from the question of how I became blind, this is the question I am asked most often, by friends, acquaintances and perfect strangers. There are a few facets to my answer, and this is, as always, my own personal experience. Molly Burke, a Youtuber whose channel centers around disability awareness and education, posted this video answering that very question, and her experience living with Charles Bonnet Syndrome. No two blind people have the exact same experience; it’s different for everyone.
Let’s start with the simple answer. Do I have any sight?
As both of my eyes have been enucleated, I have no visual perception–no light or shadow perception which many visually impaired still retain. It’s estimated that 85% of visually impaired individuals have some remaining vision, whereas only 15% are totally blind.
I do not however, see blackness, as is often presumed. If I don’t see light, I must see darkness. I’m unclear as to how you could see darkness, but anyway…
As I grow older and my life with vision becomes a smaller and smaller piece of the puzzle, my visual memories are growing fainter. The colours I see aren’t as bright, and the detail with which I saw giraffes, flowers and my family’s faces have lost much of their definition. Even so, I am grateful that I have these memories at all: The average age for a retinoblastoma diagnosis is two years old or younger, leaving the individual with very little visual memory, if any. I was diagnosed at four and a half, and thus, my memories of sight were well-established. Those early years laid a solid foundation for how I would visualize my ever-changing world as I matured and moved into environments of which I had no visual recollection.
In these circumstances, it’s up to me to paint the picture.
Here are my paintbrushes:
- Visual description by a sighted person
- Tactile exploration
Having an object or environment verbally described to me is often my first go-to for understanding my surroundings. Being as clear and as detailed as you can be gives me the best chance at painting an accurate and vibrant picture. Here’s an example:
At the end of 2020, I was searching Facebook Marketplace for a place to live as I was planning on moving to a new city in the new year. Many postings relied on photos to attract potential tenants, but I was focused on the written description the seller wrote alongside the pictures. I came across a suite which was described as having a “small” bedroom, “floor-to-ceiling” windows and a “large” backyard. I’ve enclosed small, floor-to-ceiling and large in quotations to make a point: These gave me a beginning off of which to build my image of the suite. Since those descriptors fit the type of home I was seeking, I then asked my parents [who I was living with at the time] to describe the photos.
The space was clean, cared for, and as it was in my price range, I decided to move ahead and continue a conversation with the landlord. Not being able to visit before moving due to travel impracticalities and Covid-19 restrictions, I requested that she send a video walkthrough of the suite which she happily supplied. While watching the video, my father was able to describe the living space to me, allowing me to add a framework to my thus far, blank canvas.
“Okay, Rhianna,” he said, watching the video over a few times to make sure he described it correctly, “when you walk through the front door, the kitchen is immediately on the right. It’s like a little hallway. On the right side is the fridge and freezer–fridge on top and freezer on bottom–and then there’s a bit of counter space before the stove. Keep going along the right and there’s more counter space. Now, it turns to the left and here’s the double sink. This is straight ahead from the entrance into the kitchen. Coming back along the left side of the kitchen, which is now on your right, you have a long counter–it’s counter space all the way back to the front. The fridge and stove are opposite this counter.”
Can you see it?
My parents proceeded to walk me through the rest of the suite, the living area, bathroom, bedroom and the stairs outside leading down to the backyard. My painting was looking great!
But it wasn’t enough. Not quite yet. Oh, it was good enough for me to apply, and be accepted, to rent the suite. But I was excited to move and complete my picture and add the tactile details it needed to bring it to life.
When I arrived at my new home three weeks later, I was chomping at the bit to fill in the details of my picture. Daddy had done a good job of describing it to me, but I was ready to explore it for myself.
As I moved about my new home, I discovered that the cupboard doors didn’t close flat against their neighbouring cupboards, so to avoid a headache, I’d have to ensure I closed them after I was finished. I found out just how big the floor-to-ceiling windows really were, and how to operate the blinds. I learned how to adjust the temperature, the ceiling fan, and where the electrical outlets were. These details gave my painting nuance and a fullness that could only be gained from physical hands-on exploration.
Exploring my environment tactually is my preferred way to learn my surroundings. Not only is it enjoyable, but satisfies my innermost desire to be independent and self-sufficient–a vital feeling for a disabled person to have. But a combination of external, visual description and independent, physical discovery offers me a full and immersive picture of my world, which for me, is the ultimate goal.
It’s A Movie In My Mind
I don’t believe that my “sight” is much different than yours. I am constantly taking in information, adding and subtracting details to create a beautiful image of the world around me. The difference is merely that I’m taking it in through my remaining senses–hearing, smell, touch and taste–rather than primarily through the eyes.
This is how I visualize everything, whether I know the setting or not. I know my own home inside and out, but what if I don’t know the store I’m heading into to grab groceries? As I go, I take in details such as smells, the feel of the flooring, how much space is around me [is it cramped or open], big objects like shelving units, display cases etc… all of these details help me to create an image, and I can recall that image the next time I’m in that location.
It’s a movie that never ends! It constantly shifts from scene to scene, and with each, more detail is added, bringing the world of that movie to life.
So, contrary to the assumption that I must live in blankness or darkness because of my blindness, I live in a vivid, colourful world, just like you. I may have to gather my information by different means, and sometimes it isn’t always spot on and might take a few tries to memorize my surroundings, but is lacking in nothing. My world is full of vibrant imagery, bright colours, and as much joy as ever–after all, joy is found in more than visual ability.
Just take a look around, or simply close your eyes, and you’ll see. Go on, I’ll wait.