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Pioneering Country Doctor Rethinks Cerebral Palsy Care

January 18, 2017

For most of the week, orthopedic surgeon, Dr. Joseph Dutkowsky, works at Bassett Healthcare Network, a small rural hospital network centered in Cooperstown, New York, where he’s seen some of the same patients with cerebral palsy (CP) for over 20 years. What most of his patients don’t know is that he drives four hours to New York City weekly to see patients at the Weinberg Family Cerebral Palsy Center, part of Columbia Orthopedics and New York Presbyterian Hospital. That’s just the tip of the iceberg – he wants to change the way New York City and the world sees disabilities.

A Change of Heart

Before he earned his MD, he was an aerospace engineer who analyzed nuclear weapon testing data until he had a revelation. He realized that the technology he was analyzing could be used to help rather than hurt people. When he applied to medical school, he wrote his essay on using this technology to assist people with cerebral palsy.

“People ask me ‘Why did you go into this field?’ and, in many ways, I don’t know but I’m eternally grateful that I did because I’ve got the best job in the world,” said Dr. Dutkowsky.

Working in the Shadows

Dr. Dutkowsky, or Dr. D. as his patients know him, was one of the first physicians to specialize in caring for patients with CP across the lifespan and is one of its foremost experts. If a physician had an older CP patient, they would refer them to Dr. D. He’s well-known in the medical community as a pioneer and expert on cerebral palsy at all ages but, years ago, was little known outside of it. Public perception on cerebral palsy too was (and still is in many ways) skewed on the disability, leading to a lot of misinformation.

“When most people think about cerebral palsy they think about a child on a Shriner’s shoulder or at least they think about a child,” said Dr. Dutkowsky. “We need to know that there are probably two to three times as many adults with cerebral palsy in our country and our communities right now as there are children.”

In 2012, Executive Director Dr. David Roye recommended him for a position in the newly formed Weinberg Family Cerebral Palsy Center. Dr. Dutkowsky was at the CP Center since its launch, taking care of its first set of patients and more recently an increasing number of adults who transitioned from a retired practice based in Weill-Cornell.

“I came here and I had a little office with an air conditioner duct taped to a wall,” said Dr. Dutkowsky. “And now we are considered one of the top CP centers in the country. We have an international reputation.”

International Spotlight

In 2012, Dr. Dutkowsky was featured in a New York Times article on his faith and his care philosophy. He opened up about his love for patients and how he treats them as more than just “skin and bones.” Years after the article was published, Dr. Dutkowsky received an email from the article’s author who was contacted by a father in Kenya seeking treatment for his child who has CP and forwarded the email on to him. Dr. Dutkowsky was able to refer and connect the father to a recently opened medical school in Nairobi whose founding Dean is a former CP Academy colleague.

“Maybe we just changed a life in the middle of Kenya,” said Dr. Dutkowsky. “There was no master plan. It was just dots that fell into place.”

He’s still not used to the attention he received from the article. At the CP Center, he sees patients and their families who have traveled as far as Egypt. Many of them request him by name.

“I know it’s a role and I have to play that role but I have to be careful that people don’t put me on a pedestal. It’s a long way down,” said Dr. Dutkowsky. “I’m trying to learn what to do with this new attention. You have to be real and be yourself.”

Grand Canyon Moments

For Dr. Dutkowsky, one of the greatest joys of working with CP patients is for what he calls “Grand Canyon Moments” – moments where his patients open up to him about their lives and what is going on beneath the physical pain. One patient came in to receive Botox injections in her arms just to give her mother a hug. Another patient came in with no emergency but Dr. D suspected there was something more he wanted to talk about. Eventually, the patient asked if it was okay to date since he had CP. “Of course,” said Dr. Dutkowsky, “and you’ll make a wonderful husband and father.”

“You really have to listen to people and give them time to tell their story in a very old school way,” said Dr. Dutkowsky. “You sit down, rock, and let them talk to you. The Weinberg Family Center gives me the chance to be a country doctor in the midst of an incredibly sophisticated medical center like Columbia.”

He acknowledges the responsibility these moments entail. He believes that it’s a privilege to have patients feel free to be vulnerable during their sessions and trust him with sensitive information they haven’t shared with anyone else, including spouses and family members.

“You have to stop and take the moment in,” said Dr. Dutkowsky. “You have no right to tell people what to think and feel. You have to use your humanity to allow people to be unbound so that they may think and feel for themselves.”

NYC Ballet to the Rescue

After a patient’s mother approached the New York City Ballet, the CP Center has co-hosted regular ballet workshops that Dr. Dutkowsky has overseen. He’s a firm believer of the healing powers of the arts and, by giving his patients autonomy from their braces and support devices, it allowed them to feel free.

“You cannot take care of a child or an adult with cerebral palsy without taking care of their family and their community,” said Dr. Dutkowsky. “And their community doesn’t just mean their school or their home. It means their church. It means their grocery store. It means the New York City Ballet.”

Since a video of the workshop was shared on Upworthy last year, it has gone viral – receiving more than five million views. The program has proven to be so popular that the Philadelphia and Orlando ballets have replicated it to similar success.

“What was very interesting is that we did it on Broadway,” said Dr. Dutkowsky. “You know, the Weinberg Center’s address is also Broadway. When you’re on Broadway, you either get a lot of egg on your face or you win. There’s no in between.”

Changing the Culture

Once a week, Dr. Dutkowsky makes the 200-mile trek to New York City but his mind is rooted firmly in the country doctor mentality. He still lives on his farm in Cooperstown and has an old-fashioned rocking chair with roll-top desk. It’s not the change of scenery that drives him to make this epic journey weekly – he’s driving down to change the culture.

“Cerebral palsy looks the same all over the world,” said Dr. Dutkowsky. “It’s the same in the barrio of Lima, Peru as it is in Westchester.”

Whether it’s a ballet workshop or an article in The New York Times, he wants the world to stop seeing the disability and see the person instead.

“People with cerebral palsy have the same goals, the same desires, the same dreams, the same frustrations, the same loves, the same angers, the same hopes as the rest of us,” said Dr. Dutkowsky. “It’s important for society to realize all persons are entitled to their dignity and their respect.”

He’s not thinking of moving to New York City permanently anytime soon, though. He still drives the country roads to see patients in rural upstate New York. Besides, his heart still lies deep in the country.

“Working with people, they’ve taught me to accept myself,” said Dr. Dutkowsky. “Not despite my imperfections but because of my imperfections. They taught me to like myself better. It makes for a very fulfilling professional career and life.”

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