Blog

August 3, 2011

I’d like to tell you about Volkan, a bright 13 year old boy with a rare genetic skin disease that is leaving him weak and dependent on a wheelchair for mobility. At first glance, I admit, I wondered at the disease. I didn’t get a run down of the participants’ conditions, nor did I want them initially. It is good to see first the reflection of the creator, the beauty of the person, the joy in their eyes… the whimsy. Later, I asked. Degenerative. Expensive medicines. Dad carries him to school on his back. Story.

But the real story came through Volkan’s photos.

“Life is short,” he commented as a result of this photo taken for the Self-Portrait portion of the project.

“Life is all mixed up, like this yarn.”

“Life is like a test (sinav).”

And there were others. Of a dog in a cage and “I don’t want to be caged up like this dog.” Of Volkan himself posed between two teenage strangers and, “I want to be out in community, with people.” Real emotion, frustration, insight. The camera truly had become the instrument that allowed him to see without it, to express it to us.

How to explain, American readers, how precious this window was indeed! Turks don’t allow themselves to feel pain nor express such vulnerability, especially to others. It was a tenuous time of giving space for such raw feeling and it felt dangerous to the Turkish Kardelen workers. In the aftermath, parents received the brunt of this exposed emotion and “damage control” had to be done.

But I have to believe that an attentiveness to story is the beginning of reclaiming lost dignity! In the newness, even to the workers, it is difficult to push forward. But it is humanity, at its best.

And then there is this:

Several photos of local salesman, men who show kindness to Volkan and his brother. Image after image like this, of each storeowner, yielding proof of being valued. Volkan says of this picture, “These men are nice to us, they share things with us.” It is a sense of protection and an unspoken lack of shame. In a culture which devalues the disabled; In a society which believes disability is a curse, here are community members who show kindness. It is worth photographing, repetitively.

At the end of our project, one of the Kardelen workers who spends time with Volkan and his family expressed how much she had learned about him that she had not realized, how differently she now saw him through his photographs and reflections! And then she asked, “What was the goal, anyway? Was it just for the kids, or us too? Because my thoughts were really changed as a result of this project!”

If a picture is worth a thousand words, how do we begin to write the novels of these dear ones?