Article
For artist and writer Noora Remi, migrating with retinitis pigmentosa meant redefining what it means to see, belong, and create.
My fingers are dripping with paint as I stare at my blank canvas that keeps getting in and out of focus.
How will my next stroke look? What will it say to those who can see?
My name is Noora Remi, and I live with a condition called retinitis pigmentosa, a condition that causes constant vision loss over time. In my language, Noora means light. The one thing I need but cannot have.
I squeeze some black paint into my right hand, as it is the clearest color I can see. I paint with my fingers since it is difficult to see the tip of the brush. I start to play with it like dough. This helps me think. As I close my eyes, listen to music, and try my best not to feel intimidated by the blank canvas yet excited about the possibilities, I am reminded of the first day I stepped off the plane and felt the warm, clear breeze of Australia on my face.
Starting anew, far away from the place I once called home, is a formidable task. Adding the heavy weight of navigating a world that is not designed for disability makes this task seem almost impossible.
The stigma that surrounds people with disability, the unlawful denial of my guide dog in some cabs and some restaurants, cause me much distress as I try to navigate a world catered for the sited, yet being in Australia I learned so much about advocacy and systems that have been put in place to support people with all forms of disability, the likes which I have not seen elsewhere. It was in Australia that I learned to use my mobility cane, where I learned and was trained in assistive technology to be able to read and write. It is in Australia that I learned with the help of my occupational therapist to navigate my kitchen safely, social spaces and personal care. And it was here where I met my beautiful guide dog, Vine, and learned together with her to navigate roots to my local coffee shop, to my child’s school into my yoga class.
Every intimidating blank canvas is also filled with endless possibilities.
As the days, months, and years pass, the ocean and trees, the buildings and streets, friends and family, all start to fade. I hear, smell, touch, and feel other dimensions of Australia, deeper and much more beautiful ones.
As I paint the unseen on my blank canvas, thoughts, emotions, ideas, and relationships, I come to realize that it is only through connection to the essence of the land, the sea, and its diverse people that Australia has truly become home.