Jewish Disability Awareness, Acceptance and Inclusion Month I want to share with two moments of personal awakening. The first was in 2007. I had been […]
Jewish Disability Awareness, Acceptance and Inclusion Month
I want to share with two moments of personal awakening.
The first was in 2007. I had been rabbi at Beth Jacob for 12 years, and felt that the synagogue had done a good job of prioritizing inclusion. We had built a ramp, so the Torah table was accessible. We had an ethic of every Bar/Bat Mitzvah being individualized to the needs of each student and had made thoughtful accommodations. I preached about inclusion. Some students had aides in our Religious School to support their learning and our Preschool had an extraordinary Director, Ann Cauterucci, who created a school of loving inclusion. I was proud of our efforts..
But then that extraordinary Preschool Director, shared with me conversations she had with some parents – that our Religious School was not meeting their needs when it came to inclusion. I confess to responding a little defensively – “We were doing a great job!” But I listened.
We decided to send out a survey and to set up a task force. The survey results woke me up. Over a dozen parents let us know that they did not enroll their child in our Religious School because they felt we lacked the ability to thoughtfully accommodate their children. Some parents shared feeling so overwhelmed with caring for a child with special needs, the thought of Religious School was simply too much. We read painful testimonies to people who felt overwhelmed, isolated and unsupported. They desperately wanted to lift up their stories, and didn’t know if it would be heard – or if it was heard, whether it could be responded to in a meaningful way.
I didn’t see what was right there – just beneath the surface. My eyes began to open. It was time to get to work. And we did – the whole community. We began the challenging and time-consuming work of making systemic changes – slowly shifting ingrained behaviors and attitudes.
Story number 2: The caveat to this story is that any sermon about my children requires their permission. My son Ethan read this, gave permission to share the story and suggested some edits. This story begins a little before the previous story. The same wonderful preschool noticed some of Ethan’s behaviors that caused concern and sensitively shared them with us. The observations were things we had experienced as well, and evaluations confirmed some special needs. He didn’t fit neatly into any box and we have been careful not to label him.
We began to set up Team Ethan – therapists, coaches, babysitters, teachers, friends, family, his doctor who understood him this incredibly kind, fun-loving, curious, bright, gentle soul – and became our partners in helping him thrive.
And there were still things I didn’t yet see and internal attitudes I needed to confront. My deeper awakening began one day when he was in Kindergarten at a Jewish Day School The day began with tefilla in an assembly room that when full was crowded and noisy. The teacher in charge directed the students to pay attention and participate. I was with the parents in the back and noticed Ethan fidgeting, not participating, looking all around. I heard myself say, “Come on Buddy, pay attention.” I watched the teacher nearby tried to direct him: “Ethan, let’s say the prayers.”
When I’m honest, I know in that moment a piece of me that was disappointed in his behavior – wanting him to participate like the other kids. I wish I had that moment back and could replace disappointment and judgment with understanding, compassion and advocacy.
Know that I forgive myself for what I didn’t see. For all of my growing knowledge about special needs and inclusion, I didn’t fully understand how Ethan’s sensory experience in that moment created anxiety. Nor did I see my judgement, and how that was driven by that parental desire to see our children reflect our expectations – rather than embrace them for who they truly are. This moment was the beginning of understanding in my heart, what I knew in my head, preached with my mouth; but hadn’t fully internalized: it isn’t about me.
Ethan has been my greatest teacher – and I am a different parent, rabbi and person as I learn from him. There are moments when I feel inadequate and uncertain. But I know my job is to learn and to love, to accept and support – so that Ethan and every child can find their voice and soul.
My Jewish soul supports and guides me. Everyday, I say Blessed are you God, Who has made me in the Divine Image – she’asani b’tzalmo. When I affirm that everyone – just as they are reflect Divinity, I look at people differently. It leads to questions: “What is his or her divinity? How might I not be seeing it?
My Judaism informed me in so many ways. I turned to stories of leaders who also had disabilities – which may have make them even better as leaders! Moses had a speech impediment – it may have opened his eyes to those who were out of the box. Rav Sheshet was blind and developed other senses in keen ways. Our tradition is full of stories of people with differences who changed community for the better.
I love the line in Psalms: even ma’asu habonim, hayta l’rosh pina – the stone that builders of the Temple rejected, was made the cornerstone. It reminds me of the harsh judgement that exists in our world – people who are rejected because they do not conform to some image that exists. It also lifts up possibility – the rejected becomes the cornerstone. Our sacred task is to take those who have been dismissed and rejected and allow them to truly the cornerstone of our community.
How do we take these stories and texts and make them real in our lives and communities? I want to share five guidelines:
- Open our eyes and hearts to people who are excluded: Ask – whose might be overlooking? What story of people is missing? Listen – to families and people who want to be included. Hold onto the mindset that we are not doing things for people – but with them. Respond – make this a priority, talk and teach, allocate resources. It means we have to overcome the stigma, shame and judgement associated with difference and challenges. We have to move beyond talk and embed in our community culture that each human has something special to contribute to the holiness of the community.
- Find partners and allies – I thank God everyday for Team Ethan. In addition to those I have mentioned, there is also Friendship Circle – an incredible program in our community. Ethan began as a participant and eventually became a counselor. In terms of Jewish community, there are so many partners and initiatives worthy of celebrating ranging from Jewish LearningWorks INCLUDE program to summer camps to those who fund this important work. At CBJ and here at Beth Am there is a group of advocates who lead, and a community that supports. The Jewish community is changing when is comes to awareness, acceptance and inclusion.
Be conscious of other partners who can help you embed this in your community as you are in relationship. At CBJ, we made a connection with Aleh Negev – an incredible residential village for people with severe handicaps, and patients receiving rehabilitation. It is a little slice of heaven. As we met its visionary leader Doron Almog, traveled there to see the dignity with which they treat every person and the innovations that are changing people’s worlds – we learned, were inspired – and saw what else can be. So many wonderful partners exist and as we connect and share stories, best practices, challenges, stories the ethic embeds more deeply into our communal DNA. Attitudes shift, stigma and shame diminishes. Change happens.
- Celebrate Success – There are incredible successes. I know that here at Beth Am there have been extraordinary moments of emotional inclusion. For me, Mimi and our family, Ethan’s Bar Mitzvah was extraordinary. He let us know that it wasn’t the number of people that concerned him – it was people he didn’t know. We listened – and had his Bar Mitzvah at Mincha – the afternoon services – when we don’t normally have services. Our community understood that we could not invite everyone. Ethan worked hard and was amazing! It was a moment where we glimpsed what might be.
At one point, between chanting aliyot he took the yad and was twirling it in the air – it calmed him. I was picturing it flying out of his hand and stabbing my father in the front row. As I moved to stop the twirl, our Ritual Director, Bill Futornick gave me the nod that said, “Chill out – it’s fine.” And it was. Far more powerful than any sermon I have given, was this boy celebrating moving toward adulthood – in a way that both embraced tradition and his needs. Celebrate success!
- Repeat: ‘It’s not about me’: I needed not to re-write Ethan’s Bar Mitzvah drash the way I would have delivered it and let it be his. It wasn’t easy.
We recently had a celebration for Mimi’s parents’ anniversary and an old family friend shared how he overcame difficulties in his relationship with his autistic grandson. His words: “The more I learned, the more I realized the problems we were having were not about him – they were about me.”
- Be willing to see where we can improve: Once our eyes open – we see so many places where barriers exist and how we can more deeply embed inclusion into the culture of community. Constantly assess and re-assess. Keep learning. Be persistent. I know at CBJ and here at Beth Am we have lifted the bar, and I also know we can do better.
Let me conclude by taking you forward from Ethan’s Bar Mitzvah. He was the class speaker at his High School graduation. He loves to give drashot and lead tefilla at CBJ. He is attending college 3,000 miles away in Pennsylvania and travels up and down the east coast independently. He loves Shabbat dinner at Chabad – although he is a passionate egalitarian. He is a mensch, who is resilient, determined, coming to know himself. He visits an older woman who is a shut in, serves sandwiches to homeless people, has wonderful friends, knows he is loved and just joined the rugby club – oy.
We never thought these things would happen – but they have. And for all these accomplishments, he continues to face challenges as we all do. I know that every person is different and not everyone will be able to share what I have shared about Ethan in terms of where he has come to. Hold onto the potential to grow and accept people where they are. See each person’s intrinsic holiness at each moment of the day. May we grow as a community of love, awareness, acceptance and inclusion, where each person shines and is a blessing. Shabbat Shalom.