My Tourette Syndrome and I Are Not Your Mitzvah Project
I have Tourette syndrome, a neurological disorder characterized by involuntary movements and noises called "tics." My Tourette’s is relatively mild at this point, but I went through a turbulent adolescence when Tourette's was the most defining thing about me. Between the constant movements and the loud, uncontrollable noises, it was incredibly disruptive.
I now work in the Jewish community as an inclusion advocate, as well as in youth engagement. So I have this cool opportunity to see the Jewish community both as someone with a disability and as one who is supporting congregations and communities in creating more inclusive spaces for all people.
Sometimes I hear people talking about how much of a “mitzvah” (good deed) they are doing by opening their doors to people with disabilities in their community. Maybe they allowed a child with autism in their youth group or religious school, or hosted an “inclusion” service.
But here is the thing: It is not a mitzvah to let me in the door. It’s not. Opening your door to those with disabilities is not enough. Because there is a critical difference between tolerance and full inclusion. If we are practicing full inclusion, our communities should be celebrating each person and what they bring to the community, not just what they demand of it.
Many times throughout my life, I have felt like I was the mitzvah project of the week, like the community didn’t really want me there, but knew including me was what they were supposed to do. I always felt like we were one step away from my face being on the community bulletin with a story reading something like, “We did it! We included somebody with special needs! Be proud everyone. Be real proud.” OK, maybe that’s a bit of an exaggeration. But feeling like my presence was another’s mitzvah made me feel even more like an outsider.
People keep telling me their community is really working on their “tolerance” of those of us with disabilities. I tolerate the weather in the winter. I tolerate the neighbor who is learning the drums. I tolerate going to the dentist. But none of these are things I like; they are things I know I have to deal with. But every person - whatever their unique gifts, whatever their limitations - has value, and no one wants just to be tolerated.
It is so important that we are aware of those who feel on the outside (disability or otherwise), and are putting programs and services in place to ensure that everyone has the opportunity to feel engaged and valued. It means doing things like tailoring the b’nai mitzvah experience to cater to children of varying needs, and instilling in the community a mindset that being inclusive is everyone’s role, not just those who have it in their job description. It’s using preferred gender pronouns and celebrating families of all shapes and sizes. It’s making sure we are constantly reevaluating our communal offerings, so we never become complacent.
Let’s think about how we talk about inclusion – and make sure we are never “othering” anybody, be they people with disabilities or their families. Getting in the practice of “yes and-ing” as much as possible is a great way to start. That is, saying "Yes, we want you and your family to be part of this community, and we want to partner with you to make sure that not only are your needs met, but that this is a place where you are cherished and can fully participate." It’s creating partnerships of synagogue leadership, teachers, and families, and sometimes stepping outside our comfort zone to try something new.
Because when we have a community that appreciates each person and what that person brings to the table, the entire community benefits. A fully inclusive community is celebrating the unique qualities that everyone brings to that table, creating a safer and stronger community – one of trust where people can be uniquely themselves.
Just opening your door is not a mitzvah; it’s a start. What happens after the welcome is what really matters. It’s the critical difference between being tolerated and being valued – that difference is everything.
Watch Pamela Rae Schuller give an Eli Talk, "I Am Here, Hear Me Bark: Comedy, Disability, and the Inclusive Synagogue."