The thought of blindness reduces the world most know to a bunch of constantly changing sounds, smells and shapes.
In his book, Blindness, author Jose Saramago has a character suggest: "Blind people need no names." And in the film adaptation that opens on Thursday, September 11, at the Atlantic Film Festival, you'll find characters identified by circumstances rather than names: The first man; the doctor; the girl with the dark glasses---all blind and anonymous. What better way to depict a mysterious condition than to deny the people that inhabit it their names? To understand real blindness I think this is exactly what you need: names.
My name is Jeff and almost 14 years ago, around the time of my 16th birthday, I woke with an odd patch of blurred vision in my left eye. It appeared as though I had smeared Vaseline over one of the lenses of my internal camera. So began an "opthamologathon" that ended with the diagnosis of a hereditary and degenerative eye condition, choroideremia. There, among the innumerable unknowns of the future, a detail crystallized that would inform a lot of my decisions from that moment on. That first odd patch never did go away, but instead grew to encompass most of the visual field in that eye. Patches appeared in my "good" eye, too, diminishing further what I can see and leaving me only a small patch of central vision comparable to a pinhole to get around with. Where most people have 180 degrees of useful peripheral vision, I have five. Again, where most people can get around at night OK, I can barely navigate a bar-room without knocking into someone or something.
I'm going blind. There's no cure for my condition. Its rarity, however fascinating it might make me to the medical profession, is saddled with the truth that there are simply not that many people affected and therefore a limited amount of money is being invested in the genetic goose-chase of finding it.
Since my diagnosis, I've spent a lot of time seeking out people who are blind or have, for one reason or another, experienced vision loss---what better way to prepare myself than to talk to people?
So, I took a course from a university professor, Rod, who, after losing his sight, became a doctor of sociology and the author of a number of books on disability. From him I've learned that disability is as much defined by the world around us as the "body gone wrong" medical model. We live in a sighted world.
I once worked alongside an outspoken and enthusiastic man named Tom. Born blind and eventually fitted with false eyes, he had been asked to prove that he was blind so often that once, simply tired of defending his condition, he removed his eyes and offered them to a skeptical bus driver.
I recently learned of a former artist-in-residence at a Halifax university named Leighton. A painter, he developed vision problems later in life. Rather than say good-bye to his full life he took up blind sports and found a new way to paint. So established was his interest in art, the fact that he no longer sees as well as he did hasn't stopped him from doing what he loves.
I know a woman named Helen: Blind and so frustrated by the fact that people who are blind can live their lives unaware of the services available to them, she has committed herself to fighting and advocating on behalf of others. She wrestles with bureaucracy, devoting her time and resources to improving the quality of her life and the lives of others. While the fight is tiresome and her resources limited, her passion for the rights of the disabled is what seems to keep her going.
A few years ago, I worked with two Rastafarian brothers, Jayute and Prince, on the island of Antigua, who were both born with extensive damage to their eyes. They grew up with poor sight in a culture where disability is just another limitation among a politically corrupt and economically depressed society. They worked for dollars a day in a workshop for the blind, refurbishing cane chairs, living in a tiny shed powered by stolen electricity and producing hip-hop music on a computer with special adaptive software. Their enthusiasm for music drove them and defined their lives. You don't know they're blind when listening to their music.
What I've learned from these people is that, like any good story, blindness is truly character-driven. Their blindness is defined by how they have chosen to live their lives. Their blindness is not like Blindness. They have names and stories and lives outside of their conditions. Likewise, my life is rich and full of things that define who I am aside from my eye condition. I'm a husband, brother, son, writer and will soon be a father; and someday blind.
When Blindness opens across the country, people are going to be walking out of theatres feeling that they have seen blindness. So, instead of letting its characters, their desperation and symbolic despair define this condition that affects real people in this city, hopefully you'll consider other stories.
Saramago includes this phrase in the preface to his book: "If you can see, look. If you can look, observe." Observe then, how no blind person is simply blind.