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The Distance Between Us: Photographer Documents His Twin with Cerebral Palsy

My last post featured stylized photographs of elderly people looking into mirrors and seeing their younger selves reflected back. While I was writing that story and contemplating the broader theme of reflection, serendipity occurred when I stumbled upon this Kickstarter project by Connecticut-based photographer Christopher Capozziello.

Chris has been photographing his twin brother, who has cerebral palsy, for over a decade. He didn’t start out with any project or book in mind, he was seemingly working out his thoughts and grief about his twin brother’s world and how different it was from his by documenting a very different … reflection.

The photos are beautiful, dark, and moving … as in they exude movement (as well as emotional movement). I had a keen sense of the energy of the moment before and after each photograph was made, and that’s what really drew me into each one of them. As well as Chris and Nick’s story.

I reached out to Chris to find out a bit more and he graciously spent some time in responding.

Tiffany Diamond: In reading your story, I was struck by your comment about archiving many of the photos without really looking at them. Would you tell me more about this, if you can. Was it more about the act of photographing your brother in the moment and filing it away, rather than placing the importance on seeing what you captured?

Christopher Capozziello: I first began making pictures of my brother at a time when I was trying to understand the kind of photographer I was becoming. I started to photograph Nick when I was home on break from college, when we were outside our families home throwing a baseball back and forth, or when we were out at a local bar. Years later I was still making pictures, but I couldn’t tell you why I was also making pictures of him in pain. Ten years after the first pictures were made, and with a steadily growing archive that chronicled his experiences and unknowingly at that point, my grief, I felt it was time to share through the journalistic community our story.

I knew what I was capturing, but to look at those images again was painful because a photograph of him would force me to stop, and examine what I was making pictures of. It would force me to deal with my own anger and guilt over being the healthy twin. When I first started photographing Nick, we were 20. We are now 33.

TD: What does your brother think of all of this?

CC: In the very beginning, Nick didn’t like that I was photographing him, so I would sneak one or two pictures and then he’d realize what I was doing, and he’d turn his face away from my camera or flip me the bird. One of the earliest pictures was of him in bed, waking from a cramp. I walked into our bedroom, and the sunlight on him looked beautiful. I crouched to make a picture and the shutter from my old Nikon was so loud that it startled him.

He punched me in the face; I dropped my camera to the floor holding my cheek, and then Dad ran in the room, wanting to know why I was making pictures when I knew Nick didn’t like it. I turned and explained how amazing the light was, that I wasn’t trying to bother him. Of course, he wouldn’t understand, and rolling his eyes muttered something under his breath about how I don’t listen. That photograph made it into the book (page 74-75).

As time went on, Nick didn’t mind me photographing so much. He and the rest of our family would sort of provoke me saying, “It doesn’t matter that Chris takes so many pictures, we’ll never see them anyway!”

I didn’t ever expect to look at them either, and really, as the years went on I didn’t know why I was still photographing Nick at home, during good times and bad. I suppose this story was inevitable after all. Now, after I’ve shown Nick the images, he sometimes finds it difficult, sometimes he laughs.

I never talked with our family about my feelings of guilt growing up; never told them how I wondered if I had somehow caused this problem for Nick when we were in the womb. That grief was a surprise for them, and hard for Nick to understand at first, but he’s come to understand, and he realizes that the images of him in pain are just as much a part of his story as the ones of him lighting a cigarette for a beautiful young woman.

In that way, I hope the photographs capture his personality — he feels they do. Moving forward, I’m thinking differently about how I might frame the next part of our story, which I wasn’t considering at all, except, our family pushed that by saying, “Your story isn’t over yet. What will the next one be like?” I’m not sure if that will happen, but I think the level of grief will be less. At least I hope it is.

TD: There is a distinctive look to your photography — can you talk about that a bit?

CC: When I first started making pictures of Nick, I was photographing him with a film camera. When I began freelancing full-time, I made the switch to digital. Because this story wasn’t something I ever set out to tell, I would make pictures of Nick when I was home hanging out, or when we were out doing something. Always, I had my camera at my side, and sometimes I would make a picture, sometimes not. I think if I had treated this like one of my other stories, it would feel much different to me. It would feel wrong. When I’m with my brother, I’m with him because I want to be, not because I want to make pictures.

But, because the images captured on film looked different from the images captured digitally, I had try to match them visually. It took some time to tone them so that there wasn’t a sort of visual hiccup between the older images and the newer ones.

And still, sometimes I’ll be home with a film camera, and will make pictures with that. I wonder in the end if I’ve matched them, but not being much of a technical photographer, it’s more of a question for me. There are a number of programs out there that help simulate film grain. I’ve tried NIK Silver effects pro, and that seems to help.

TD: Since you’ve been doing this over quite a number of years, how do you feel it has influenced/impacted your other photography?

CC: I think everything we do influences every part of us. My editorial work influences the way I make pictures of my brother and vice versa. What I read, what I eat, what I listen to; it’s all a factor in who I am, in who I’m becoming. And, I think that growing up with Nick, and carrying the questions I have for so long, and the anger at what seems like injustice that he struggles in ways I do not, has affected me the most. I think it’s made me have questions about a lot of things in life: why people suffer, how they deal with that, why people hate and how they came to that point.

I think that the pictures I’ve made of Nick over the years have allowed me to look for the nuance in other stories over a long period of time. It’s the difference between working on a daily assignment and doing my best to understand what I’m looking at on a deeper level, and doing that over a period of years, and being gentle with collecting images of experiences.


To learn more about Chris and his work, visit his website. His Kickstarter campaign can be found here.


Image credits: Photographs by Christopher Capozziello and used with permission.

[via PetaPixel]

[via PetaPixel]

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