Madison native subject of stirring memoir of life with Down syndrome
David Egan benefited as one of first preschoolers at UW-Madison's Waisman Center
When David Egan was born, 43 years ago this week – Sept. 17, 1977 – his parents, John and Kathleen Egan, doctoral students at UW-Madison, saw apprehension on the faces of the medical professionals who delivered the baby at St. Mary’s Hospital.
The sense of unease was punctuated when a doctor said, “Your son has Down syndrome. I am so sorry.”
Down syndrome is a congenital condition characterized in part by intellectual disability.
Kathleen was momentarily quiet, then spoke. “My baby is beautiful.”
All these years later, that baby is now the author of a memoir, “More Alike Than Different: My Life with Down Syndrome,” a stirring account of the Egans’ determination to help their son live a full life and his refusal to let his disability define him.
David Egan has testified before the U.S. Senate; served a year-long Joseph P. Kennedy Jr. Public Policy Fellowship in Washington, D.C.; participated as a Special Olympics athlete and then served the organization as a global messenger; worked a full-time job; traveled to 14 countries; and spoken before audiences of thousands.
None of it would have happened had the Egans, in fall 1977, taken the standard social services advice in those days and institutionalized their child. They would not.
“Few places,” David Egan writes, early in the new memoir, “were welcoming enough to mix people with disabilities into classrooms in the 1970s. Luckily, my family lived in Madison, Wisconsin. The Madison community was open to inclusion when my parents made inquiries.”
UW-Madison’s Waisman Center was launching an early childhood program in 1979, and, according to Egan, reached out to his parents. He and a child with autism were included in the first class of a dozen preschoolers.
“That experience,” Egan writes, “was a rewarding part of my early education and laid the foundation for my social skills and overall development.”
I met Egan in summer 2013, when he returned to Madison to speak at a Waisman Center seminar titled, “Reflections on Inclusion.”
“I experienced inclusion from day one in a mainstream preschool,” Egan said that day. “The preschool made a difference in my social skills and ability to interact and express myself. I had a great time mimicking my friends and I had to try hard to keep up. I learned to crawl and hang onto things to make sure I did not miss the fun.”
The Egans moved to Virginia, where they still reside, when David was 8. They were there last week when we talked by phone about the new memoir, which David calls “a team effort. It took a lot of different people to make this happen.”
The genesis was another book, 2018’s “Firestarters: How Innovators, Instigators and Initiators Can Inspire You to Ignite Your Own Life.”
One of the book’s coauthors, Paul Eder, has a son with Down syndrome. Eder hoped to include someone with Down syndrome among the 40 or so leaders profiled in the book. His search led him to Egan.
Egan is featured in “Firestarters.” According to Kathleen Egan, the book’s success led the publisher to contact the family and suggest their son put together a memoir of his own.
It was a significant undertaking.
“My parents had binders and boxes of papers,” David Egan said. “Mementoes of all the things I’ve been doing throughout my life. The papers covered the dining room table, the kitchen table. I had to figure out how to put them in the appropriate order. That took some time. Looking back and reflecting on those years was a good starting point for making the book.”
Kathleen helped with the writing, and family friend Will Schermerhorn – a journalist and videographer who has a son with Down syndrome – assisted with editing.
Egan asked important people in his life for recollections that are included in “More Alike Than Different.”
Egan worked for many years for the consulting firm Booz Allen Hamilton, and now is employed doing community relations and outreach for SourceAmerica, which he describes as “a national organization that helps people with disabilities.”
His new memoir includes a sidebar on the Waisman Early Childhood Program, which according to Egan has grown from having 12 kids in one classroom to being an accredited preschool serving 150 students in six classrooms.
“They give children a great start in life no matter their diagnosis and condition,” he writes. “Every child is gifted in some way or another. The earlier you explore their talents, the sooner their abilities surge and blossom. I believe I am good proof that it works.”
Doug Moe is a Madison writer. Read his monthly column, Person of Interest, in Madison Magazine.