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Responding to Disability

In my work as Director of Jewish Learning Venture’s Whole Community Inclusion, I have the wonderful opportunity of leading disability awareness trainings for educators, clergy, and community members across the Greater Philadelphia area.

One exercise that I often use to open trainings is to invite participants to take a moment and think of a person whom they know who has a disability, “The person  who comes to mind might be someone from your immediate or extended family, a neighbor, a synagogue member,” I say. “Or someone who went to school with you in a classroom down the hall. Or, it may be that you have a disability and would like to reflect on your own experience.”

I then ask: “What has the person who comes to mind taught you? What lessons have you learned from their life experience?”

When I share this exercise in disability awareness trainings, I am always amazed by the rich stories and experiences that come forward. Sometimes, people reveal a hidden learning, cognitive, or mental health disability that their peers don’t see and share about their own wisdom and understanding that’s grown out of their experiences. Sometimes people talk about close family members or friends and the challenges and successes that they’ve witnessed in knowing them. Other times, people may recognize interactions they’ve had with a community member at a grocery store or other setting where they have gotten to know a person with a disability just by being open and engaging with that person in casual conversation.

The reality is that 20% (or 1 in 5) of the population has a disability of some kind, and so it’s likely that either we ourselves or someone close to us will be one of those people. Disability can be present from birth or it can be acquired through an accident or through the aging process. Each of us who does not have a disability today doesn’t know that that will be true for us tomorrow… or at some time in the future.

We’ve made significant progress in the Jewish community in raising awareness of disability inclusion issues and in providing better support and access in our synagogues, schools, and camps. But there still remains, in many cases, a sense of isolation for people with disabilities and their families. As a mom of a son with cognitive and sensory issues, I’ve experienced this feeling many times and have heard from many people who share this experience. At some community events, programs, or services, staring or “shushing” occurs. Or sometimes, people simply avoid the person with a disability… and their family. Exclusion—for whatever the reason—hurts.

It’s essential that we make room for conversation about our personal responses to people with disabilities and how each of us can overcome anxiety or concern and move into friendship and understanding. This personal work is a necessary step if we are to become a truly inclusive community.

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 a person who was unsure of how to engage with families in my community who were raising kids with differences. 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 of how to do so.

In my talk, I share about how the Jewish value of Bikkur Holim can give us some guidance and grounding about how we can support families going through a disability diagnosis—and through the life span. Our Jewish communities know how to be there when people are going through challenges—we bring meals, we send cards, we check in, we listen. We can expand our circles of compassion to be there for people with disabilities and their families.

In my own life, I’ve experienced the way that someone reaching out can have a profound impact on my energy and emotions and on my son’s experience of being valued. For example, one day I was at the grocery store with my son and, as usual, we had a number of people looking at us. My son moves his body a lot—jumping, flapping, rocking back and forth, and people tend to stare when they see him. On this day, an older woman looking at cans across the aisle from us stopped me and asked if my son could get something down from the top shelf for her. “He’s so tall,” she said, “Would that be okay?” I gestured to my son and he took down the product she needed and put it in her cart. She thanked him and he smiled so broadly, beaming pride. What that woman did was to see something he was capable of rather than judge his deficits. This simple moment brought me to tears.

Similarly, one day I had taken my children to a festival at a local park that was busy with music, food, and games. I saw a woman with Down Syndrome and her caregiver sitting by themselves, away from the action. I noticed that no one was interacting with them. I’ve been there—it’s an incredibly lonely feeling to sit apart from the activities going on around you. I walked over and said hello and asked if they were enjoying the festival. I introduced my children and we chatted for a moment. Later that afternoon, the caregiver approached me and thanked me for stopping and saying hello. It was such a simple gesture and it makes me wonder why we don’t naturally do that kind of thing more—in our shuls, schools, and community gatherings.

In my ELI 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.

Faith, Companionship and Vulnerability: Standing With Families Who Have A Child With A Disability

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