When I was younger, I trusted other people's perceptions of my appearance more than my own.
After all, they could see, and I couldn't.
I lost most of my sight when I was five and couldn't remember what I looked like in the mirror. To me, my face was just a face shape.
"Why does it matter what you look like from the outside?" Siobhan Marin reflects in the podcast Face Value.
"But it does. People treat you differently depending on how you look."
In my case, how I looked was based on a collection of other people's ideas — which could range from helpful to harmful.
How others perceive me
As an adult, I like to keep my hair long. But my family still tells me to get a fringe.
"It'll make you look younger and fresher."
It reminds me of when I was a child and trips to the hairdresser were a regular occurrence.
I had no say on what hairstyle I could have.
"Short bob with a fringe" was the adult's order. All I had to do was sit in the chair and feel the scissors as it scraped across my neck.
I wanted to check — how short was short? Could I still run my fingers through what remained? Why couldn't I grow my hair?
Inevitably, my fringe would grow past my eyes, making me uncomfortable. Soon it would be time for another trip. These days, I don't listen to suggestions to cut it short again.
We live in an intensely visual world and in Indonesia, where I grew up, there was no boundary on what people would say to make up for my lack of sight.
If someone said I had food on my face, it was easy to clean up. But when they commented on my hair, it was harder not to internalise their suggestion — they were my filter, and they were sighted.
At its most challenging end, this dynamic formed my visual self-image based on what I didn't have. Eyes with no double-lid, a nose which is too small, a neck which isn't long enough to make the 'beauty cut'.
Growing my sense of self through tactile feedback
It took years for me to understand that I know my body better than anyone because I live and breathe in it.
I have another kind of knowledge. I know how my self feels in a tactile sense, and it feels fine.
This distinction between visual and tactile feedback is what turned my self-image from a construct, which I had no control over, to how I want to be.
It's the difference between how other people might look at me, with the person inside my skin who moves and thinks.
It also brings home the realisation that although I understand visual concepts, I may not always attach any importance to them.
In a non-visual world, odd socks of the same material feel as good as fringeless long hair and every other feature which is just mine. I am that face-shaped face.
Living in a visual world as a non-visual person
In a different culture in Australia, there is still no getting around the importance of visual appearance.
But with a range of technology and a wider support network, I've come to understand that not everyone looks at me in the same way.
Going through photos other people have taken of me with a professional describer, there are subtle differences.
One photographer exposes me with sharp focus while another contextualises me with the background. They do find ways around my involuntary eye movements which makes looking at the camera for a period of time an impractical ask.
There is something reassuring in knowing I am part of the surrounding rather than the soul focus of a photo.
As a non-visual person, my appearance is part of the person who walks inside my skin. A person who, despite my best effort, wouldn't always get all the details right or doesn't have the luxury to put on makeup such as eyeliner or contouring product independently.
In lockdown, I finally discovered the limit of long hair.
When it ended, I went to the hairdresser and said: "Halfway down my back, with layers".
Source: ABC