Gabrielle Kaplan-Mayer directs Jewish Learning Venture’s Whole Community Inclusion which fosters inclusion of people with disabilities through the Philadelphia Jewish community. She 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 and was chosen for this year’s Jewish Disability Awareness & Inclusion Month Book Selections. She’s recently shared an ELI Talk on Standing With Families Raising Kids With Disabilities and has released a journal designed for special needs parents.
Forget religion and politics, sex and money: talking about disability can be one of the trickiest, most awkward-moment-producing topics around. As a parent of a child with a disability, I’ve participated in more than my share of unproductive conversations based in other people’s projections of my experience.
I get it — differences raise fear and anxiety for all of us. When we face any issue with fear (especially subconscious fear) rather than acceptance or openness or curiosity, the chances for meaningful dialogue are limited. I do have hope that with increased disability awareness education, we can turn things around and create more productive conversations in our communities about what it’s like to live with a disability or with a family member who has a disability.
Here’s an effort toward that goal, with another one coming tomorrow. These are the three things that people say to me about my son’s disability that make me squirm the most.
Oh gosh, I’d love to respond to you, but I just threw up a little in my mouth and need to go brush my teeth. Yes, people have said this to me in response to my son’s autism. I don’t think it’s ever fair to project your theology onto another person. In my understanding of God, I was not selected by a divine being to parent a child with autism. George has autism because of a complex mix of genetic and environmental factors that scientists are still trying to understand. Did God also personally handpick the parents who abuse and murder their children with disabilities? Please leave God out of it.
“How do you do it?/I could never do what you do.”
Well, here’s the thing. When I decided to have a child, I didn’t set a limit on what I could or couldn’t do for that child. I love my child and will go to the end of the earth to help him. If you, parent of a typical child, tell me that you couldn’t do what I’m doing, I pity you because I know that your love for your child has limits. What happens if your child gets in an accident and becomes brain damaged? What will you do then?
“It must be so hard.”
Some days are hard, but most of the time, parenting my son George is an experience of love, growth and being present. Focusing on what is hard about it doesn’t help me or help him. I am sorry that you only see our struggles. Yes, I have developed Wonder Woman strength that may leave you in awe — that is one of the gifts that comes with my parenting journey. It’s inside all of us.
Tune in tomorrow for a list of what to say that could really get us talking!
Gabrielle Kaplan-Mayer coordinates Celebrations! at Mishkan Shalom; a curriculum is available to bring the program to your synagogue. She also serves as Special Needs Resources Director at Jewish Learning Venture and in her spare time teaches about cooking for kids of all abilities.