By Doug Moe
David Egan, an award-winning advocate for people with disabilities, will deliver the keynote speech at the Waisman Center’s 50th anniversary gala.
David Egan, born with Down syndrome at St. Mary’s Hospital in Madison in 1977, has spent much of his life proving that there isn’t much he — or others with intellectual disabilities — can’t do, given an opportunity.
It’s true that Egan’s own path has been extraordinary, the accomplishments too many to list. In his 46 years he has held competitive employment, competed in and been an ambassador for the Special Olympics, traveled widely, spoken extensively to groups about what people with intellectual disabilities can do, won numerous awards (most recently the 2022 Quincy Jones Exceptional Advocacy Award), and published a memoir, “More Alike Than Different: My Life with Down Syndrome,” coauthored by his mother, Kathleen Egan, who is one of the heroes of this story.
Egan has spoken to large audiences in places like Washington, D.C. and Los Angeles, where in 2015 he addressed a crowd of 60,000 in the Memorial Coliseum at the Special Olympics World Summer Games.
But it’s possible no address will mean more to him and his family than one he will give Thursday night at the Monona Terrace Community and Convention Center, when Egan keynotes the Waisman Center’s 50th Anniversary Gala.
It’s also a bit challenging.
“This speech is one of kind,” he said, when I shared a call with David and his mother last week. “It’s not one I’ve done before.”
In the speech, David will talk about inclusion and trace his earliest years and his enrollment in 1979 as one of the first dozen students in the Waisman Center’s Early Childhood Program, which welcomed kids with and without intellectual disabilities.
David’s mom and dad met as graduate students at the University of Wisconsin–Madison. David’s diagnosis of Down syndrome was hard on them, especially at first, but after the shock and tears, they rallied.
“Our pediatrician was wonderful,” Kathleen says, “and put us in touch with Dr. [John] Opitz, the famous professor of genetics at the university.”
Later, Kathleen would recall how Opitz, who identified the 44 physical traits of a person with Down syndrome, could fit David’s whole body in one large hand.
“Dr. Opitz did a diagnostic on David,” Kathleen says, “and said, ‘You know, we have the Waisman Center.’”
Kathleen and her husband, John, were open to a research study, and two researchers at Waisman — Dr. Ana Doodlah and her student, Rita Holstein, experts in muscle movement and physiology — began making monthly visits to the Egan home. In addition, Kathleen invited neurotypical neighborhood kids into her home so David could observe and mimic them.
“If he’s only around kids who have the same problems he does,” she says, “how’s he going to learn?”
To that end, Kathleen mentioned to Doodlah that David wasn’t getting much from a kiddies camp program for kids with intellectual disabilities. Doodlah noted that Waisman would soon be starting an early child program that “mainstreamed” these kids with those who did not have the same disabilities. Might she like to enroll David?
Kathleen and John jumped at it.
The Waisman Center opened 50 years ago this month, in October 1973. It was named in honor of Dr. Harry A. Waisman, a pioneer in the field of intellectual disability and human development who died in 1971.
At the opening, Madison-based U.S. Rep. Robert Kastenmeier called the center “a fitting living memorial to Dr. Waisman’s goals and dreams.”
Although David was very young when he enrolled at Waisman in 1979, for his memoir he tapped photos, videos and family members to recall the experience, writing: “I loved the program, and it was good for me. We had drama, free play, blocks and trucks, music, and many other activities with our great teachers.”
The Waisman Center reached out in February 2023 to see if David was interested in giving a keynote speech in 20 months. He was interested and accepted.
But the subsequent months have been tough for David. He had a bad bout with COVID-19 and was hospitalized twice in July and August.
Kathleen reached out to Waisman organizers. Word came back, in effect, that they knew David would get better and for the family to keep them posted. Then, earlier this year, David was hospitalized with pneumonia, and admitted into cardiac intensive care.
Again, Waisman organizers kept the faith. David got better.
Twelve members of the Egan family will be in attendance on Thursday night: his parents, siblings and their spouses, his nephews and a niece. David also met so many interesting people throughout the years who became good friends. Many of them will be at Monona Terrace. Some will not, having passed away, and David asked if I might try to mention two of them: Joan Leffler and Harriet Rosenbaum.
Moments after David was born in 1977, his parents sensed the concern on the birthing staff’s faces. The doctor took David and left, eventually coming back. “Your baby has Down syndrome,” he said. Later there would be suggestions of an institution. But that day, Katheen only said, “My baby is beautiful.”
John and Kathleen offered David every opportunity. The Waisman Center provided his foundation. Just look how far it has taken him.
Read the original story here: Channel 3000 / Madison Magazine
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50 Years | 1973 - 2023