The Down Syndrome Lowdown
Jewish high achievers Jason Kingsley and Mitchell Levitz
speak out on life with developmental disabilities.
Sandee Brawarsky - Jewish Week Book Critic

More than 30 years ago, when Jason Kingsley and Mitchell Levitz were born, their parents were advised not to take their newborn babies home from the hospital. Both boys were born with Down syndrome, and the prevailing thinking was that their potential was severely limited and they were best institutionalized. The two boys have written a book — recently issued in a new second edition — that not only proves that thinking wrong, but that has become required reading for many of the medical professionals who advise families of children born with Down syndrome.

“Count Us In: Growing Up With Down Syndrome” by Jason Kingsley and Mitchell Levitz (Harcourt) is a book of conversations between the two, first published in 1994 whey they were, respectively, 19 and 22, with comments by their mothers and other family members. This edition includes a new afterword, updating their stories. As they told The Jewish Week in an interview earlier this week, the title refers to their interest in being included in the community.

 

Book Cover

“Our message is that people with disabilities have the same hopes, dreams and goals and feelings. We’re individuals with opinions, tastes, personalities,” Kingsley says.

This is a remarkable and unforgettable book; the authors’ voices stay with the reader long after the book is finished. With its authentic and honest dialogue, the book provides a window of insight into a world that many readers know little about: what it means to live with Downs syndrome. Their conversations — their language and syntax is not edited — are thoughtful, serious although sometimes playful too, and very expressive. Love comes up a lot for them, as does family.

The three of us meet in Kingsley’s home in the Westchester community of Hartsdale, and we sit, joined by their two mothers, around an informal dining room table. “Three Musketeer” memorabilia — movie posters, antique and modern figurines, paintings — surround us, as Kingsley and his two roommates identify with this earlier threesome. Jason’s roommates also have Down syndrome, and the attractive home with its lovely front porch is conveniently located near public transportation to their jobs. The trio recently led a local effort to have sidewalks installed on their street.

Since graduating high school and completing a post-secondary school transitional program preparing him for a career and independent living, Kingsley, 32, has worked at Barnes and Noble, the White Plains Public Library and now the mail department of the Westchester ARC, an agency serving children and adults with developmental disabilities. He has been involved in the acting world since he was 15 months old and appeared on “Sesame Street” (and made many appearances since then); he also appeared in episodes of “All My Children,” “The Fall Guy” and “Touched by an Angel.” He says that he’d like to do more acting and is also interested in learning more about photography, videography and preparing storyboards, and would like to work in media.

Mitchell Levitz, who just turned 36 and lives on his own in Cortlandt Manor, has built a career in the field of disabilities. He works as a disabilities specialist at the Westchester Institute for Human Development, associated with New York Medical College, and also for the Self-Advocacy Association of New York State. A member of the board of directors of the National Down Syndrome Society, he speaks frequently around the country on behalf of individuals with developmental disabilities, and has contributed chapters to several books. He’s particularly interested in helping reach out to those people with disabilities who may not have the loving support that he and Kingsley have benefited from. While he said in the book that someday he’d like to be president of the United States, he laughs about that now, and says that he is more interested in policy than politics.

Kingsley and Levitz are very much at home with each other. “Buddies,” Kingsley says. They’ve spoken together so many times that they often know what the other is going to say, but they don’t interrupt, although Levitz sometimes prods his friend with questions. They have known each other since they were very young, and Kingsley sometimes takes on an older brother role.

That these two have had many unusual opportunities is evident in the book’s photo section, where Kingsley is seen with former New York Gov. Mario Cuomo and receiving a Kennedy Award from Ethel Kennedy. Levitz is photographed with Gov. George Pataki, who introduced the young man to the State Assembly. The two are also photographed in 1987 with Yankee slugger Dan Mattingly.

In the book, they speak openly about their feelings about having Down syndrome, and they also talk about school, relationships, politics, religious beliefs, marriage, sex and their desire for independence. When they wrote the book, they spoke happily about the possibilities of marriage and their interests in finding partners, while talking about the advantages of marrying someone with disabilities or not.

Now, 13 years later, they sound like a pair of 30-something bachelors. They’re both less sure whether they will get married. Noting his parents’ marriage and the love he sees, Levitz says that he would love to get married, but says that he’s not sure it’s going to happen. Kingsley is more certain that he’s “off women, permanently,” and his mother points out that he recently had a painful breakup.

“It’s important to keep an open mind,” Kingsley advises his friend, who shakes his head.

“I have a lot of love for other people,” he says. “My mom is still the first one. I love my friends.”

About Judaism, Levitz is the more outspoken, fondly remembering his bar mitzvah and speaking warmly of his sister Leah who died recently. She taught him about the need to put other people ahead of himself.

“I read the prayers in terms of what it is in my heart, what it means to me,” he says, adding that Judaism brings a lot of joy to his life.

Kingsley says that he learned songs and traditions as a child in Sunday school. His mother points out while they don’t do a lot of Jewish rituals, they are proud secular Jews. The family decided not to have a bar mitzvah as they were putting time and effort into so many other things at the time, she explains, and then turns to her son and says, “You still can do it.”

He points out that he has already taken on Joshua as his Hebrew name.

The book has been published in Hebrew and Japanese, and a Spanish edition is in the works. Emily Kingsley, who writes for “Sesame Street,” points out that there is no other book like this. From comments that they’ve received, both men and their families realize that they have changed people’s attitudes, and they’re very proud of that.

For Levitz, having this new edition provides “closure, our full experience growing up with disabilities.”

“New chapters are writing themselves every day,” Kingsley says.

Barbara Levitz, who’s involved professionally in the same field as her son says, “it’s important that the parents of our generation can open doors for their children to become the next generation of leaders in the disability field.”

Reading about and meeting Emily Kingsley and Barbara Levitz is inspiring. With great determination, they wouldn’t let their sons be written off. They write that it became apparent “that the early predictions terribly underestimated the boys’ capabilities and our two families became increasingly committed to dispelling the old misconceptions and to send out a more hopeful message about the potential of children like Mitchell and Jason.”

“We have learned the folly of attempting to predict a person’s quality of life based on his or her label or condition.”

“Count Us In” is a life-affirming, eye-opening work. Jason Kingsley advises, “Be passionate of your life. Even if you have Down syndrome."

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