By Gabrielle Kaplan-Mayer
1 in 5 human beings 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 arms 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 US 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 as educators, we have a responsibility to nurture in our students a willingness and curiosity to learn about life experiences that are different from their own and engage in conversations and activities that help them to understand more about what living with a disability is like.
One way that we can introduce this kind of sensitivity and understanding is through reading and discussing memoir. February is Jewish Disability Awareness & Inclusion month, a time when our community shines extra light ways that we can all take action to welcome and support people with disabilities.
I am honored that this year, my new memoir The Little Gate-Crasher has been chosen as one of the book selections for JDAIM Reads. Each year, several books by Jewish authors highlighting disability issues are chosen for JDAIM Reads. Synagogues, JCCs, book groups and other organizations are encouraged to read and discuss these books during February.
The Little Gate-Crasher features the amazing story of my Great-Uncle Mace Bugen – an unstoppable spirit, 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 towards people with dwarfism. The book features Mace’s photos of himself with the greatest celebrities of his era, including Muhammad Ali, Joe DiMaggio, Sammy David, Jr. and more.
In this year’s other selection, Ketchup is My Favorite Vegetable: A Family Grows Up With Autism, Liane Kupferberg Carter delivers a mother’s insight into what really goes on in the two decades after diagnosis. From the double-blow of a subsequent epilepsy diagnosis, to bullying, Bar Mitzvahs and prom, Mickey’s struggles and triumphs along the road to adulthood are honestly detailed to show how one family learned to grow and thrive with autism.
Both books can work well for a variety of different programs grounded in the Jewish values found in our book discussion guides. You could set up a program for your middle school/high school teen program, youth group, camp group or an informal gathering of Jewish teens who like to read. Of course – your program doesn’t have to take place in February – any time of the year is great for this kind of discussion. A few program ideas include:
- Parent/Teen Dialogue: If a family isn’t personally touched by disability, parents and kids may have never had an opportunity to discuss their feelings, fears and insights about people with disabilities together. Both books are quick, engaging reads for adults and teens. Invite them to read together and use the discussion guide to create interactive conversations for parents and teens.
- Partner with your Adult Book Club: More and more synagogues have book groups now, so reach out to the book group leader and invite the adults to read along with your teens. Invite the adult book club members to your class or gathering for an intergenerational conversation about Jewish values and disability.
- Book Talk with The Authors: Liane and I are delighted to Skype into your class or book club to do a reading and lead a discussion with you! It’s lots of fun for us and makes your job easy. Contact me to schedule.
My hope is that reading these books will make life with disability feel not as far away or scary from most of our lives, so that when we encounter disability personally, we can be present with friendship, kindness and caring.
Gabrielle Kaplan-Mayer directs Jewish Learning Venture’s Whole Community Inclusion and loves writing/editing for “The New Normal” and for WHYY’s newsworks. Her latest book The Little Gate Crasher is a memoir of her Great-Uncle Mace Bugen, a self-made millionaire and celebrity selfie-artist who was 43 inches tall.