When my son, Ben, was a kid, a few times a year, he would get these funny twitches. It was kind of cute, actually. Like a bunny, twitching its nose. Sometimes it would be accompanied by some throat-clearing. Or even some eye-blinking. And it was always accompanied by cold symptoms. The pediatrician would prescribe a 10-day course of antibiotics, which would clear up both whatever infection he had as well as these weird movements.
Over time, however, it would happen more frequently. Instead of just one or two times a year, it was more like half a dozen. And instead of some cute rabbit-like movements, Ben’s head would snap to the side. Or his jaw would jut out repeatedly.
In the early spring of 2014, Ben started ticcing and just couldn’t stop. No longer restricted to his head, Ben experienced “trunchal” tics, tics that had moved right on down the trunk of his body. His legs would suddenly kick away from him. His arm might thrust away from his body. His back would hyperextend backwards. And he made noises. Lots of them.
Which led us to a formal diagnosis in November of 2014: Tourette’s Syndrome.
Tourette’s Syndrome is a neurological disorder where a person makes involuntary movements and sounds such as repetitive eye-blinking and grunting. Symptoms tend to appear in childhood or in early adolescence; the most severe form affects more than 200,000 people while one in 100 have a milder form of the disorder.
There is a lot about Tourette’s that is unknown. No one knows exactly what causes it. Or why there is a higher prevalence among males. Nor is there any known cure. Symptoms can sometimes be managed, but that is not the same as a cure.
Tourette’s is not caused by anxiety, though anxiety can exacerbate it.
Tourette’s is not purposeful, though there are techniques and strategies that can allow those with Tourette’s to compensate.
When we received Ben’s diagnosis, he was crushed.
He already was dealing with being on the autism spectrum, anxiety, and mood issues. To him, it was just one more thing about him that was broken.
Tourette’s is an odd beast. It seems to be cyclical. There are times when Ben’s tics are barely perceptible. And then, without warning, they reappear with a vengeance. We spent a long day in the ER this past May due to the unbearable pain along his back and legs caused by the unrelenting and violent muscle tics. And then, just as swiftly, they go back into hiding.
Ben’s teachers don’t understand Tourette’s. They try to goad him into standing still during the Pledge of Allegiance, as if he wants to be making a spectacle of himself. They comment that he would do much better in class if only he would sit still and stop moving around, as if he chooses to rock his head back and forth.
When they make these and other comments about him and to him, it is no wonder that he feels broken. Less than. Other.
We do what we can to help minimize the embarrassment and pain Ben feels, but what teenager is completely consoled by the well-meaning words of his parents? So when I caught a recent ELI Talk about inclusion given by Pamela Schuller earlier this week, I watched with great interest. Pam is the URJ Regional Youth Engagement and Inclusion Specialist as well as a stand-up comedian. Her presentation, I Am Here; Hear Me Bark: Comedy, Disability, and the Inclusive Synagogue, is the perfect blend of passion, information, humor, and Torah, and told by someone who truly owns her disability without being defined by it. A great example for Ben and so many others like him.
I’ve heard a lot of talks on inclusion in the Jewish community. I’ve given a lot of talks on inclusion in the Jewish community.
And not one of them comes close to touching the power of this one.
In her talk, Pam describes how Tourette’s was her identity growing up. She describes how, after being deemed too disruptive, she was asked to leave her synagogue. And how being asked to leave a sacred community made her feel as though she had no place in Judaism. In her words, the community did not know how to respond to her, so they just didn’t.
What is astounding to me is not that the Jewish community could not find a place for her. What is astounding to me is that she even gave the Jewish community a second chance.
For Pam, it was a Jewish overnight camp that made the difference. There, she found a community that valued each person for what he or she brought to the table rather than one that focused on what each person might be lacking.
Ultimately, Schuller concludes that inclusion shouldn’t be about what we can’t do because a person with special needs is a part of our community. Rather, inclusion is about what we get to do because we learn and we grow with every single community member.
As a rabbi, I love how Schuller brings Torah into her talk. God is held up as a paradigm for choosing someone with a disability, Moses, to do great things. Yes, with accommodations. Yes, with extra encouragement. Yes, with creativity, but not with fewer expectations. Schuller points to the moment of Revelation at Sinai, which was not limited just to those who could walk or who didn’t make involuntary noises. Torah was given to all of us. And, if as our tradition teaches, everyone was there, then Torah and Judaism need to be accessible to everyone.
But most of all, as a mom of a child with Tourette’s, I was moved most when she said, “I have a disability and I am whole.”
Watch Pam Schuller’s ELI talk here, and let us know what you thought, in the comments section below.