Chasing Justice and Butterflies: Ed Barocas Reflects on a Life of Purpose, Humor, and Hope

One winter morning, attorney Ed Barocas arrived at a historic courthouse in Morristown, New Jersey, only to find himself waiting outside in the cold. Because he uses a wheelchair, he had to enter through a back entrance and rely on someone inside to respond to a button and open the door. More than 20 minutes passed before anyone came. By the time he reached the courtroom, he was late.

Instead of responding in anger, Barocas calmly explained to the judge what had happened. Months later, the entrance had been improved.

Stories like that appear throughout Chasing Justice and Butterflies: A Memoir of Overcoming and Becoming. They reveal not only the realities of living with facioscapulohumeral muscular dystrophy (FSHD), but also the humor, creativity, and determination that have defined Barocas’ life.

For nearly two decades, Barocas served as legal director of the ACLU of New Jersey, helping shape landmark cases involving free speech, racial profiling, same-sex marriage, religious freedom, and government secrecy. His work earned national attention and, in 2019, recognition as the New Jersey Law Journal’s Attorney of the Year.

Yet law was only one part of the picture.

Barocas has written comedy songs, collaborated musically with members of well-known rock bands, pursued his own spiritual path, and collected stories everywhere he went. He wanted the memoir to capture all of those pieces.

“I like to say I’m like everybody. I’m an amalgam of a lot of things,” he said. “My FSHD is one aspect of me. But so is my creativity. So is my humor. So is my desire to make a difference in the world.”

After retiring because of health issues, Barocas knew there was more he wanted to do.

“People always love my stories. People always wanted to hear them, and some told me to write my memoir,” he said. “I decided that would be a good way not only to let people know about my life, but to try to help inspire people. Not just people with disabilities.”

Writing the book required patience. Over the course of five and a half years, Barocas developed a process that worked with his changing physical abilities. He often composed chapters in his head and then dictated a few paragraphs at a time into his phone while lying in bed.

“I would organize the chapter in my head,” he said. “And at night, while lying in bed, I would write two or three paragraphs… dictated into my phone.”

The finished memoir moves between legal battles and lighter moments, weaving in stories about travel, camp, music, friendship, and spirituality. Humor runs through it all.

“I always viewed things a little askew,” Barocas said. “My body was a little askew. I sometimes had to accomplish things a little askew, which allowed me to be creative and see the humor in things.

For younger people with FSHD who worry about careers and the future, Barocas encourages them not to count themselves out before they begin. “I think the important thing is… don’t assume there’ll be barriers. Just move forward towards your goal. If you encounter a barrier, there is one of two ways to deal with it, either creatively figure a way around it or attack it head on.”

Looking back, Barocas doesn’t define himself by a diagnosis. He sees life as a collection of experiences and relationships. “Everyone has their own things,” he said. “I’ve tried to overcome mine in the best way I know, which is with humor and with hope.”

Part legal memoir and part collection of adventures, Chasing Justice and Butterflies offers readers a chance to spend time with someone whose curiosity and optimism have carried him through extraordinary experiences.

The book is available through Archway Publishing, Amazon, Barnes & Noble, and other online retailers.