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Published January 17th, 2024
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Local author writes about his disability, many accomplishments
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| By Diane Claytor |
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| Local author, Jonathan Winchell, at a Barnes and Noble book signing. Photo provided |
Sitting in a coffee shop talking with Jonathan Winchell about his life and his recently published book, it's easy to forget that he's not like most other older Lamorinda residents. Winchell says some of his facial features and physical characteristics are evidence but those are not immediately apparent. Then he pulls out his book, "Being Different Than My Family, Living with Mosaic Down Syndrome Chromosome #21."
Mosaic Down syndrome (MDS) is a rare form of Down syndrome, a genetic disorder that results in an extra copy of chromosome 21; people with MDS have a mixture of cells and often have fewer symptoms because some of their cells are normal. In fact, according to healthline.com, people with Mosaic Down syndrome typically have a higher IQ than those with other forms of Down syndrome.
Winchell's father told him many years ago that he "could be a good writer" if he was ever interested in pursuing it. Once he was no longer working full time, Winchell decided that he did, indeed, want to write a book about his experiences living with MDS.
The oldest of four children and a lifelong resident of Lafayette, Winchell was born with MDS. His parents were told not to have many expectations of their special needs baby; medical professionals advised that he likely would be unable to lead a normal, productive life. The prediction was wrong.
Married with two adult sons, the high-functioning Winchell worked in the family real estate business and has been an active supporter of and volunteer in numerous civic organizations.
His many accomplishments didn't come easily. Winchell always felt he was "different from the other kids at school and was definitely treated differently at home," he remembers, but his differences were never actually verbally identified. It wasn't until he was in middle school that his parents told him he was born with MDS.
The Winchell family, like most families, was, and still is filled with contrasts. There is love, support and loyalty as well as family gatherings. Growing up, Winchell recalls, there were family vacations and fun times playing with his siblings. He hiked, played tennis and enjoyed watching sports.
But it was also hard. As Winchell explains, his parents were extremely overprotective and "very controlling." He wasn't allowed to participate in outside activities, didn't have friends and found school to be quite difficult. "I didn't feel accepted or appreciated," Winchell writes. "I was never happy as a teenager . and felt my parents held me back, micromanaging my life and believing I couldn't do things on my own." He also believes that his difficulties were never understood nor embraced.
As he began writing his book and reflecting on his life and experiences, Winchell became more understanding of his parents. "Looking back," he writes, "I understand that my parents and siblings only saw my disability, which caused them to overprotect me and not recognize my strengths."
Winchell has been, and continues to be, an active volunteer in local organizations. It began with his involvement with the Lafayette Arts and Science Foundation (LASF, now LPIE) when his oldest son was in school. "I wanted to get involved in my kids' lives," Winchell says, "but knew I was unable to help in many ways because of my disability. I told my son that while I can't help with your education, I can help in other ways." He underwrote the LASF catalog and volunteered in their office. "It was great getting exposure behind the scenes and seeing where I could make a difference in my sons' education."
He continued his volunteer work with both the Lafayette and Pleasant Hill Chambers of Commerce, the East Bay International Jewish Film Festival, the Lamorinda Film Entertainment Foundation, the California Independent Film Festival Association, and the Community Emergency Response Team.
Winchell is an active member of the California Historical Radio Society and serves as the staff photographer for the Bay Area Radio Hall of Fame; he received their Legend of the Year award in 2019. Last year, he received the Volunteer of the Year award from the California Independent Film Festival Association.
"I never expected the best in myself when I was younger," Winchell proclaims. "Being born with Mosaic Down syndrome is not who I am, it's what I have. . But I overcame so much and am very proud of my accomplishments."
A review on amazon.com says Winchell's book "takes you on a life journey of his obstacles and struggles in everyday life that so many take for granted" and kirkusreviews.com writes that "this memoir . is a candid life story sure to teach and inspire others affected by disability . it will undoubtedly resonate with readers."
"Being Different Than My Family" is available on Amazon.com, barnesandnoble.com and other online booksellers. |
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Lamorinda Weekly, Moraga CA