Understanding disability through memoir

One in five humans has some kind of disability — including learning, developmental, physical, emotional, or a combination of disabilities. And yet, while disability is such a common part of the human experience, some people are uncomfortable and even afraid around people with
disabilities.

As a mom raising a teenage son whose autism is very visible, I have reflected since his early childhood on why disability can trigger this kind of reaction. I think it’s in part a natural human fear of the unknown experience. Disability pushes our buttons around vulnerability — it makes us wonder, how would we react if someone in our family — or we ourselves — needed supports or accommodations for daily living?

Society has largely allowed us to keep people with disabilities at arm’s length — it’s only in the last generation or two that public schools have been mandated to provide public education for all. Many adults with disabilities in the U.S. don’t live in community settings or work in places where the public gets to interact and know them; they remain set apart.

This separation is changing, but it’s slow and requires all of us to move out of our comfort zone to know about and respect the lives of human beings we may have never seen as a natural part of our community. I believe that we have a responsibility to nurture a willingness and curiosity to learn about life experiences that are different from our own and engage in conversations and activities that help us to understand more about what living with a disability is like.

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The biography I wrote, “The Little Gate-Crasher” (The Sager Group, 2016), shares the story of another family member who has a disability — and the incredible life that he lived. It features the amazing story of my great-uncle Mace Bugen, a first-generation Jewish-American, self-made millionaire, celebrity gate-crasher … who was 43 inches tall. Mace’s unstoppable spirit defied the challenges of his own physical limitations and society’s prejudices toward people with dwarfism. The book features Mace’s photos of himself with some of the greatest celebrities of his era, including Muhammad Ali, Joe DiMaggio, Sammy Davis, Jr., and more.

Books are powerful tools to help us understand lives that are very different from our own — and in many ways, also very similar. I encourage educators and everyone else to use the lessons in my book and others like it to inspire conversation in your community.

If a family isn’t personally touched by disability, parents and kids may never have had an opportunity to discuss their feelings, fears, and insights. Invite them to talk about these with you. If you need direction, I included a discussion guide in “The Little Gate-Crasher” to create interactive conversations for parents and teens, and I encourage you to read it together.

My hope is that through memoir and open discussion we can make disability feel not as far away or scary from most of our lives, so that when we encounter it personally, we can be present with friendship, kindness, and caring.

Gabrielle Kaplan-Mayer is a writer and educator based in Philadelphia. She directs Jewish Learning Venture’s “Whole Community Inclusion.” Kaplan-Mayer is available for Skype discussions with book clubs that read “The Little Gate Crasher.” Contact her at gabriellekaplanmayer.com.