nick-chrisChristopher and Nicholas Capozziello are twin brothers who live three miles apart in Milford, Connecticut. Born prematurely in 1980, Chris was delivered first and went on to flourish. Nick, delivered five minutes later, stopped breathing and had to receive intensive care. Before their second birthday Nick was diagnosed with cerebral palsy,which continues to affect his life.

Chris became a freelance photographer and over the years has taken many photos of his brother, a selection of which he has now published in book form with a narrative that, in his own words, “seeks answers”. The Distance Between Us is a dramatic and moving work of photojournalism inspired by love and anguish in equal measure. Christopher Capozziello talks to MercatorNet about it here.


MercatorNet: Referring to your twin brother’s cerebral palsy you have called your book “The Distance Between Us” yet what comes through strongly is your closeness to him. What kind of person is Nick? What do you love most about him?

Christopher Capozziello: Sometimes what we perceive about reality is not true about our relationship to it. There certainly are differences between Nick and me, but that distance that I have felt between us has in many ways created a thick fog, not allowing me to see what’s really in front of me. In many ways it’s been blinding.

Nick has a wonderful sense of humor, and despite his inabilities, he is quite capable of many things. If you put him in a room with strangers, Nick is quite comfortable striking up a conversation, talking with people he knows nothing about. I wonder if he were a photographer if he’d get even closer than I get with people, telling a deeper story. There’s something about him that makes you trust him.

How severe are his symptoms? Will they get worse? Is there any hope that medicine can help him?

Nick is able to walk and speak and function on a fairly normal basis, but a cramp can come on him anytime. These cramps are usually the result of too much physical activity, but not always, and they happen without any sort of warning. When a cramp does begin, his face changes even before his body goes rigid. His mouth shuts and his lips pinch together. I can see it in his eyes as well, the way he looks slowly at me and then slowly away. It is this look that transforms him from my twin brother, my equal, to a younger dependent. But this is just the beginning. Next, he will lose his ability to talk and his body will contort and lock. This may last minutes, or it may last hours; sometimes his muscles will cramp for days. He does take medication, but it doesn’t always keep this from happening.

We don’t know what to expect for the future, except that he has a chance to live as along as any of us do. In November 2009, Nick under went Deep Brain Stimulation Surgery (DBS). For the first time, our family held out hope that things would improve for him. The doctors said that while the surgery might not completely stop his muscles from cramping, it could significantly decrease the effects of the cramps. With this surgery, they shave you bald and rig you to a stereotactic frame that holds your head steady while they drill through your skull to insert electrodes for a “brain pacemaker.” Once they switch the implanted device on, it delivers tiny electrical shocks to your brain, gradually retraining your whole nervous system to relax your muscles. It was hard to imagine him facing those risks, but it was even harder to imagine him being better. The doctors will continue to change the intensity of the electric currents for the rest of his life. Yet still, Nick continues to experience these same cramps fairly regularly.

 

          

          The Distance Between Us from Christopher Capozziello on Vimeo.

You have been making pictures of your brother for over a decade now – has it helped you to understand him better? How has it influenced your style as a photographer?

The photographs haven’t helped me to understand the person that Nick is, but they have helped me to deal with my own guilt and grief about being the healthy twin. I’ve felt ashamed most of my life. Ashamed at how people look at me in connection to him. Ashamed that I have what he can’t – the ability to carry on a decent conversation, to go to college, to follow my dreams, to have a career, to drive a car, to move out of our parents’ house. Meanwhile, he sits in that room of his, alone everyday in the room we grew up in, in the room that seems, to me, at least, more like a prison than a bedroom – a place where he is being punished for something in which he had no choice.

It’s strange to me how things end up working out. I began making these pictures at a time when I was trying to understand the kind of photographer I was becoming. It was a way to practice seeing, yet as the years went on, I continued to photograph Nick during good times and bad. Those harder pictures, the ones that show him in the midst of a cramp were hard for me to understand why I continued to make them. I had no interest in showing these images to anyone, but 10 years after I made the first pictures, I realized I had a large archive of images of my brother and I couldn’t explain why. In a sense, one picture lead to another, and our story emerged. The pictures forced me to deal with my own anger, and guilt of being the healthy twin.

I’m not sure I know if our story has influenced my style of photography, but I think I too would be a much different person if Nick did not have cerebral palsy. I question if I would even be a photographer, doing the kind of social documentary stories that I spend so much of my time on.

Your family comes across as united and generous, able to care not only for Nick but for your grandfather. Do you think Nick’s disability has actually strengthened your family?

It’s often hard to answer these questions with a knowing perspective. The way our lives are, and the way our family has cared not only for Nick but also for our grandfather when he was older and less able to care for himself is all that we’ve known. Our parents are resilient people, and when I ask them about how they see Nick’s life in comparison to mine, they talk about starting a family as a young couple and not expecting life to go this way. But that this is what happened, and so they’ve dealt with it. Their example to us is how I think a family should respond; in sickness and in health.

The mystery of suffering has loomed large in your life. You want to know why a loving God wouldn’t heal your brother. What have you learned from Nick about all this?

The book starts with this text: “I want answers. I want explanations for why some suffer and others do not. I want to know why some get better while others get worse. Is it fate or is it chance or is it just bad luck?”

I think these questions are a very human response to have. When someone we love is suffering, we often want to know why, but that question can lead us to some very dark places. In light of faith, which we often see as a way of giving us answers, it left me without any. Even if there was a sort of cosmic answer as to why Nick suffers and I do not, that answer would never suffice. If there were an answer, I wouldn’t want to know it.

One night when I was visiting home, having supper with Nick and Mom, I asked Nick if he ever gets angry with God for making him the way he is. Nick’s response was quick, as if he didn’t even need to think about it.

“I sometimes wonder why God put me on this earth the way I am,” he said. “It feels like He doesn’t answer me, but I never get angry at God because if I didn’t have cerebral palsy I would be a different person.”

Reading that again, almost five years after he said it, still stops me. Even though I’m moving past my anger and guilt, his ability to accept his own life as it is, and to be forward thinking, that he wouldn’t be himself, is jarring. It was an unexpected and jarring answer.

          nick-karaoke

          Nick at a karoake bar.

You give a mixed picture of how the public copes with Nick – people at an ale house who are friendly, kids on the street mocking his awkward gait. Do you think that society in general is getting better at accepting people who are disabled?

It’s hard to say if society as a whole is getting better with people who are disabled. Once Nick is personal to you, once you know him, you care, and you would never make fun. But, if he’s just some goofy looking guy, walking awkwardly down the street, he’s this person you’re unattached to that you can make fun of.

In terms of government and social agencies, Nick was finally given Social Security Disability about two years ago. As a result of receiving assistance, he is not allowed to get a job. That, in some ways, shows us that help is available; yet, if help is given, our government won’t allow people like Nick to work, pushing them aside. Nick, who is able to work, but certainly has difficulties, has not been able to get a job for quite some time. He is someone who wants to work, but we couldn’t find an employer who would be willing to take the risk of bringing him on board.

Inclusion for the disabled means more than building ramps, and making the public handicapped accessible, it means allowing them to take part in all of its aspects. What’s hard for Nick is that he seems to fall within a gray area, so it’s hard to point the finger at society. At the grocery store, there are a number of people who help bag our groceries that have developmental disabilities. The difference is that they work a shift, while Nick might have a cramp overtake him, causing him to be unable to finish a shift. This scares potential employers off.

Do you think employers and public agencies could do more to include people like Nick in the ordinary world of work?

Much more should be done to provide equal opportunities in employment and acceptance in the workforce for people with disabilities. Nick’s abilities may be less than others, but he wants to work, and in the right places, he could work. I’m grateful for the help we’ve received so far, although I must say, that our state government of Connecticut turned him down for SSDI numerous times, in what we’re told is a “weeding out process.” They put him through this because it is said that many people take advantage of our system. Meanwhile, Nick is someone who needs the assistance, and was pushed away, then made to wait, file more paperwork, and ultimately our family had to get a lawyer involved.

The Catholic Church in which you grew up has clearly remained a support to Nick, who among other things is a member of the Knights of Columbus. How important has this community group been to him?

It’s extremely important for him. The church and the Knights of Columbus give him a strong sense of purpose, community, and he’s made great friends there. He’s at the Knights during the week for meetings, pool tournaments, and to help with planning fundraising events for numerous social issues in our community. I think he would be having a much harder time without that community.

          nick-hamster

The second part of your book begins to answer the question, what’s next?, with a road trip you took with Nick last December. What is likely to change in “the distance between you” in the years ahead? What will not change?

The changes that have already begun to happen are more internal on my end. Although the book is about Nick, it’s also about me, and how I’ve begun to reconcile our differences. Before our grandfather passed away, he told me I needed to take care of Nick once Mom and Dad no longer were able to. It was already something I had realized long before that conversation, yet hearing Papa vocalize it, somehow made it more real. I still have many of the same questions I’ve wrestled with my whole life but see more clearly that there aren’t always answers. There are, of course, more for me to confront – things that are moving in their own direction, past our grandfather, past our parents to what lies ahead for Nick and me. I don’t know what that is yet, or how the future will look, but soon it will be just ours to figure out.

Finally, a matter of curiosity, why an Austrian publisher for your book?

A few years ago, I met a number of book publishers at Review Santa Fe. They all felt that Nick’s story was worth publishing, but nearly all of them asked for upwards of a $30K subsidy for the book to be published. When I met the Lammerhuber’s, they asked for help in subsidizing the cost of the book through crowdfunding efforts, but if the goals were not realized, they would find other ways to make this book a reality. Book publishing for photographers has recently changed, and with a publisher that was willing to come on board and take risks alongside me, I felt I could not say no to them.

Christopher Capozziello is a freelance photographer for national and international publications. His work has been honoured by World Press Photo, Pictures of the Year International, the Alexia Foundation, the Aftermath Project Grant, the National Headliner Awards, PDN Photo Annual, Review Santa Fe, American Photography, Communication Arts, the Magenta Foundation, and the National Press Photographers Association, among others. Christopher’s images have also been shown in group and solo exhibitions throughout the U.S. and abroad. The Distance Between Us can be purchased through his website.

All photographs published with this story are by Christopher Capozziello.