Pictures of Diabetes: The Broken Pancreas Project

Broken Pancreas Project - Rachelle_KenKotch

Ken Kotch was diagnosed with type 1 diabetes two days before Thanksgiving in 1988. He was in third grade, and was the only person in his school who had diabetes. Ken says, “When I was diagnosed most people’s reaction was, so now you can’t do _______. Fill in the blank with anything and everything.” Twenty-two years later, he’s still surprised when someone asks him if it’s okay for him to put salt on his fries, or if he should be eating certain things at all.

At the time of his diagnosis, while still in the hospital, Ken’s new endocrinologist, Dr. Starkman, said “Ken, you can do anything you want in your life except skydive or scuba dive.” Ken couldn’t figure out why diabetes would stop him from doing those things, but nothing else. Then the doctor continued, “Those are the two things I wouldn’t do, so I don’t recommend them to anyone else.”

Since then Ken has been both skydiving and scuba diving. He’s also become a professional photographer. Ken holds a B.S. in Photography from Northeastern University and has worked for the American Diabetes Association, Juvenile Diabetes Research Foundation, ProCycling Magazine, and many other places. He has lived in Italy, China and currently calls Boston home. In the summer of 2010, Ken traveled across the U.S. photographing people with diabetes for a project called Broken Pancreas. We had the opportunity to talk to Ken about his project, and learn more about his work.

What motivated you to start the Broken Pancreas project?

Ken Kotch
Ken Kotch

I was sitting in a coffee shop eating a chocolate chip cookie. An acquaintance came over to me and all but yelled at me, saying, “You can’t eat that! You have diabetes!”

I’ve heard this before but that day was the last straw. (I had just gotten my A1c down to 6.3 and was feeling healthier than ever.) I thought to myself, I’m either going to be angry at everyone who doesn’t know about diabetes, or do something about it. I’ve always wanted to make a book, so, the idea was born. I would raise some money, travel as far as the money would take me and produce an ebook with photos and stories of people with diabetes who don’t let diabetes get them down.

The original goal was 25 photos of 25 people. We are at around 50 pictures now and not stopping. The project is growing and we’re looking for publishing partners to make a print version and release the ebook alongside. Our goals have also greatly expanded. See our mission here: brokenpancreas.org.

How did you approach your subjects?

Each portrait is designed to showcase each person. The subject had to decide what they would be doing when photographed.

Were there other projects you studied as guidance? Any photographic style that you found particularly inspiring?

The Pink Project: Charity photobook (by Michelle Guidi and Valerie Patterson) and Final Exposure (By Lou Jones) are books I looked at early on. They are both proof that whatever obstacles you run into, you can overcome.

Do you think being a diabetic yourself gave you a unique perspective into the people you met along the way?

Yes. It really helped kids warm up to me. On a few shoots I had to stop shooting because I had low blood sugar. I think (hope) the kids could see that even some adults have to deal with these things, but it’s okay. And I think the kids liked that they didn’t have to explain to me what it meant to be low, high, need a shot, etc.

Broken Pancreas Project - John

How open were the people to being photographed and documented? Were they excited about the opportunity?

The public is the only reason I am still working toward publishing the book. People have been so excited about being in the book and so generous with their time.

How did you find and then select the people you would document in the project?

I started with a Craigslist ad. and got a few responses, but not nearly enough. Then I started a Facebook page. The response was overwhelming. It grew so fast it was hard to keep track. After the first month on Facebook I had over 200 emails from people with diabetes (not all wanting to be photographed). I selected those who seemed like the most interesting people to photograph. If I had more time (and money) I would go photograph another 50 or so people.

Who do you see as your target audience for your book and what has the reception been like thus far?

My goal is to have the book in the hands of every person with diabetes. Initially in America, but not exclusively. Reception has been great. Finding funding is proving to be a bigger challenge than I hoped.

How do you plan to go forward with the project? Do you expect it to be ongoing?

When the ebook and print book are published, I will focus more time on the rest of the mission. I hope the nonprofit will outgrow its part-time commitment and have a bigger positive influence on the diabetes community.

Has the project changed the way you photograph?

Because I traveled on my own, without an assistant, I brought very little equipment. Everything was wireless and easy to adjust and I have carried that over to my other photography. I’ve adopted the KISS (Keep It Simple Stupid) mentality.

What have you learned along the way? And how did your diabetes behave along the way? Was it hard to manage being on the road?

I have learned more than I could possibly convey. The first week or so of driving, my glucose control was a little shaky. I figured out how to change my basal rate when I was driving 5-10 hours at a time. Once I made that adjustment, diabetes was the easy part. Being on the road for a month and away from my wife was hard, but worth it. It made me really appreciate being home and spending time with her.

Sam Gellman
Sam Gellman

After growing up in Wisconsin, Sam Gellman spent his junior year of high school in the Netherlands, about half way through the year he was diagnosed with type 1 diabetes. He finished his year abroad, learning the ins and outs of diabetes in a combination of Dutch and English, which is now the Dutch vocabulary he remembers best. Sam spent his college years at Stanford, playing for the Stanford squash team during the year and leading bike trips in Canada in the summers. He spent six months of college in Chile, worked in Tahoe, and then got a job in finance in San Francisco, before moving with his job to Hong Kong in 2006. Now 29 and in his fifth year in Hong Kong, he spends his free time trying to learn Chinese and taking pictures.

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Stefanie Tsabar
12 years ago

Well done, Sam!  And, Ken, this is such a wonderful idea.  Thank you both for your time and talent!

Jennifer
Jennifer
12 years ago

i love the photos, the idea, everything.

br
br
12 years ago

these are magazine-quality photos. it’s nice and rare to see a website run such nicely composed and well-shot pictures. you are very talented!

Rebecca
Rebecca
12 years ago

These are great photos–this is an inspirational journey!  Go you!

Catherine Price
12 years ago

Great pictures – I love the one up top (Rachelle) with the bikes in motion you can just feel the movement. I also love the motorcycle pic.  

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