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To start with, this is not my story.
It’s Justin’s story, and as his one-on-one caregiver I want it to be told. There’s a lesson in it for everyone.
Justin is 25 and has Downs Syndrome. He’s visually and hearing impaired. He doesn’t speak, but he is slowly learning to sign. Justin has very few ways to communicate, which is a shame … because it’s become very clear that he has a lot to say.
When I first met him, he would remain motionless for hours until the people around him guessed what he wanted and gave it to him. Justin was a power-sitter. He hadn’t been out of the house for two years, except to go to church with his mother who now works full time and is unable to take care of him. He lives with a family from the Philippines. Justin can hear his native language and enjoy the food he is used to. He seems happy and interacts well with his new family.
I often wondered what was on Justin’s mind. I had to figure out a way to understand what he was trying to communicate. My hobby provided the answer. I’m an amateur photographer and it made sense to me to engage Justin in the way the world looked through a camera and to see his response.
As a budding photographer, Justin had everything stacked against him. Poor vision and limited hand co-ordination for a start. At first I let him use my large camera on a tripod. He’s very independent, and I left him pretty much alone and stayed in the background while he played with this new toy. I didn’t tell him what to take pictures of. I set up the camera and stepped back in anticipation of what would reveal itself before his straining eyes.
I became fascinated by his approach to this new experience and fresh empowerment. Justin would stand perfectly still for the longest time and then snap five pictures in a row. Always five.
When I uploaded the photos he had taken I was totally amazed.
He’d captured a hummingbird in mid-flight.
A blue heron with the wind blowing through his feathers.
A butterfly landing on a leaf.
The program was able to buy a simple, second hand point-and-shoot camera to give Justin more control. He’s now able to control the whole camera and expand his new-found vision. His images are becoming more abstract and adventurous. He is drawn to curves and corners and becoming ever more fearless in searching for what others fail to see.
He’s happy and more open and enjoying the respect he is getting from others in reaction to his newly discovered talent.
Justin still can’t talk and he’ll never see very well. But he’s found a way to communicate and reveal the complex and unique vision that his disabilities hid for so long.
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