As part of our going work and in recognition of Jewish Disability Awareness, Acceptance and Inclusion Month (JDAIM), we had the opportunity to talk to Dr. Arik and Allegra Marcell. The Marcells have two sons who attend Baltimore County schools and are active in the Jewish community. Arik is an adolescent medicine specialist at Johns Hopkins Hospital, while Allegra is a scientist and photographer who recently traveled the state documenting beehives in community spaces. She has also contributed photography to The Associated. Arik volunteered his expertise as part of the panel for the Power of Attorney workshop, addressing young adults with disabilities and their families about the importance of future planning.
The Marcells have been involved since their son Ezra was identified with Down Syndrome in 2013 and participated in a Kodem Kol, a program of Infants and Toddlers. Since then, they have been tireless advocates for their son, and for meaningful inclusion in general. This is what they wrote at the very start– “we are in love with our son, and he is being patient with us as we begin to understand what has been his reality all this time.” This is what they are focused on – understanding the reality and experience of others. This is how we make people feel that they are accepted and included.
A highlight of inclusion for the Marcells was Ezra’s time as a student in the Beth Tfiloh Preschool. “I do remember and [the director] was like open arms– come in we’ll make it work and she kept working with us and we kept working with her and she never gave up. It was like this wonderful bubble.” The boys now attend Sunday School at Baltimore Hebrew congregation, and are thriving, and Director of Congregational Learning, Julie Wohl, was heralded for her welcoming, inclusive approach. “They just staff it [appropriately] and he’s getting a Jewish education and I know he’s safe and I don’t worry about it.”
In thinking about how inclusion changes with the ages of the child, Arik and Allegra shared that while there are a lot of demands when children are young, it’s “a little easier then because the kids accepted him more and I think we’re entering an age where the kids are not as interested. I think elementary school was also still inclusive socially. That’s fine, people still were inviting him to birthday party right? And I think now as they are developing into teens and you know there’s not as much and all it takes is one or two people…We’re entering a harder stage and so you know our solution is too include him in as much as we can.”
One activity that Ezra has been very active in is dance. He attended a local dance camp, and that offered one of the most powerful experiences of inclusion. Allegra recalls, “[Ezra] did every single movement to every choreography so that whole time that he had been probably squatting on the floor like just staring at everyone. He was taking notes, and he has this amazing capacity to reproduce movements like dancing movements and remember them.” At the performance, “I was crying at the inclusion. I’m like in the in the depths of the most emotional moment because my child has been readily included. And did he make friends there? I don’t know but he had a blast. He learns, he learned some. He loves to dance. He got some dance training… We haven’t pursued it, but, it was amazing!”
Ezra continues to love dance, and particularly loves the musical Newsies, so he was ecstatic when the JCC’s Youth Arts program decided to stage it. It took strong advocacy from the Marcells, committed effort from the staff, and guidance from Rachel Turniansky, The Network’s Director of Diversity and Inclusion Services. But in the end, Ezra was a full cast member and had an incredible experience.
“The main point for us is that Ezra LOVES, loves, loves being involved in this program, comes home happy about it, and is singing listening, and dancing to Newsies at home constantly. Inclusion in this activity that he loves has been really wonderful for him.”
When asked about the greatest challenges in achieving true inclusion, Allegra shared, “The hardest part is constantly convincing others of someone’s capacity and ability. Everyone has to prove themselves, but for people with disabilities, the threshold seems higher.” Arik added, “More often than not, the issue isn’t the child—it’s the adults and the training. Professionals need to reach out for support, persevere, and commit to making inclusion successful. A big part of that is education—creating an environment that models inclusivity and fosters community.”
Another challenge, they noted, is the burden parents often feel when educators and camp administrators rely on them to be the experts. “It’s important to ask families what they need, but not to make them the sole resource on how to be inclusive. We already do that constantly. Instead of asking, ‘How should we accommodate your child’s weaknesses?’ ask, ‘What can we tweak to make them feel more included?’ That would be a different conversation.”
If they could share one message with parents and community leaders about creating inclusive spaces, it would be this: “Every single person, regardless of their perceived capacity—whether they are nonverbal, use a wheelchair, or don’t seem communicative—has something to contribute. We must actively look for what that person adds to the community and what the community can add to them.”
That is Disability Awareness Acceptance and Inclusion.