When you see a parent with a child who has a cognitive and/or physical disability at your supermarket, playground or synagogue, how do you react? Do you look away or make eye contact? Do you smile and say hello—or move away from them quickly?
In the last decade, our synagogues, JCCs, camps and schools have become increasingly more welcoming and supportive of people with disabilities and their families. Our clergy, educators and communal leaders are more aware than ever that we need to open our doors—literally and metaphorically—to the 20% of our populations (those with disabilities)—who were often overlooked in previous generations.
But though we’ve gotten better at disability inclusion on an organizational or institutional level, we haven’t often made room for conversation about our personal responses to people with disabilities. As a Jewish educator and a mom of a 14-year-old son who has autism and intellectual disabilities, I’ve experienced first-hand what it’s like to be at a communal event or Shabbat dinner with my son where people felt uncomfortable, awkward, not sure how to acknowledge him.
In my recent ELI Talk, Faith, Companionship and Vulnerability: Standing With Families Who Have A Child With A Disability, I share how I used to be that person—unsure of how to engage with families in my community who were raising kids like my son. I share the raw, personal story of my journey—of how I came to understand my son’s autism and imagine a community in which people reach out and try to connect with families like mine, even when they feel unsure.
I’ve heard lots of affirmative responses to my talk so far—one friend I’ve known for years, an incredibly deep and compassionate person wrote to me, “Hearing this talk made me think about all the times I, too, have flinched away (in discomfort, in awkwardness, in uncertainty) from a parent who has a child with a disability. You’ve given me a reason to act differently.”
Many of us grew up in a time when children and adults with disabilities simply weren’t part of our communities. It’s only been in the last two generations that families in the United States have been guaranteed special education for their children by the law—and so families became more able to care for children with a variety of special needs at home and bring them to become part of community.
I believe that we need to acknowledge the discomfort we might feel—so that we can move past it. In my talk, I share ways that each of us can reach out, even when we don’t know what to say.
“I need us to get comfortable with our initial discomfort around disability so we can get over it and move into lovingkindness,” I say in my talk. “If our community can rise to do this kind of companionship, we will all have the opportunity for growth and the holiness that comes through valuing all human experiences.”
I hope you’ll take a listen, share with your community and write to me about your questions or experiences about supporting people with disabilities and their families.