When I was 13 years old, my synagogue told my family that my twin brother could not read Torah at our b’nai mitzvah.
It wasn’t because he hadn’t prepared (he’d spent more time practicing than I had) or because he had asked not to (he was also more excited than I was). Rather, it was because he used technology to help communicate, such as tapping on the screen to start a sequence of his Torah portion, and my synagogue decided that because the service would be during Shabbat, that could not be permitted.
I’m only recently coming to terms with just how horrific that decision was. Our synagogue — the place where we grew up, where I ran barefoot during services as a child and then supervised kids during the same years later, where the taste of the post-services kiddush stale chips and mild salsa still lingers, where I spilled a smoothie in the room where I first learned about the Holocaust and good and evil — did not work to include my brother in one of the most important Jewish rites of passage.
Our synagogue attempted to take away my brother’s voice by claiming that technology cannot be used during Shabbat and then, in the same breath, explained the intricate operation of having the lights on and microphone at the ready because of some loopholes in Rabbinic text.
There’s a particular irony in them doing something so blatantly cruel by claiming that it is justified by the Jewish religion. My Judaism has me barricading federal buildings to protest abhorrent immigration policies — their Judaism had them gatekeeping a bar mitzvah.
In the end, the b’nai mitzvah was blessed by the Orthodox movement after my parents and others raised an uproar about their initial hesitation, which was enough for my Conservative synagogue to move forward with it. He read Torah during the Saturday mincha service, and it was beautiful and powerful and everything that a b’nai mitzvah should be. But I never forgot the way that my brother was treated. It’s not an exaggeration to say that our relationship with Judaism was fundamentally changed forever.
My family — and my brother, specifically — are not the only ones with this type of experience. And he’s not the only one to have experienced ableism in Jewish spaces, ableism that manifests anywhere from no ramps in sanctuaries, to lack of siddur (prayer) books in Braille, to more pervasive mindsets of exclusion.
Rabbi Lauren Tuchman, ordained by the Jewish Theological Seminary in 2018, does private consulting and teaching in the Jewish disability realm. For her, one of the most significant problems synagogues face in terms of ableism is thinking of their shul as a business instead of a community.
“The right question isn’t how many people need this ramp, but how many people will find their home in this building with this ramp,” Tuchman says. “We have to be emphasizing spirituality and sacredness.”
It’s a shift that, she added, is happening, but “it can feel really slow and too little too late.” Tuchman noted that representation has played a large role in those changes occurring. “The more of us that are in the community, the more real it becomes for people.”
Rabbi Ruti Regan, an associate at the Harvard Law School Project on Disability and feminist educator on disability issues in the Jewish community, agrees with Tuchman’s characterization of ableism in Jewish spaces.
“We inherited a problem, which is that all of our social institutions, Jewish ones included, ritual included, are built around the presumption that disabled people who are significantly different need to go away and be someone else’s problem,” Regan says. “We’re in a hole, we need to stop digging and build things and fix things. And [we might not be] the ones who did all the sin but we are the ones who have to do all the teshuvah [Jewish concept of repentance], and that can be a really tough shift to make.”
Regan added that, for those with communication or intellectual disabilities, she often sees a lack of interest in supporting or hearing their thoughts. Instead, “people with disabilities get treated as inclusion symbols and get seen as a way for the community to feel inclusive rather than [as people] with perspectives that are important for us or our communities,” she explains.
On another level, Jewish institutional spaces can be physically inaccessible. For example, someone might be able to enter a synagogue, but not be able to access the bimah (platform), or they might be able to access the bimah but not be able to read from the Torah because there is no podium or reading table accessible to them.
“It’s about who we see as parts of our community,” Regan says. “It’s also how we see [Jews with disabilities] as potential leaders and people who have contributions to make that the community should value.”
Rabbi Tuchman, near the end of our conversation, referenced a piece of advice she received from a prominent figure in the Jewish Conservative movement.
“The most important decision to make about Jewish law is to remember you’re talking to a person,” Tuchman says. “Always talking about living, breathing, human beings with neshamas [souls]. When we only think about what we can and cannot do on Shabbat, we’re missing the other part about what it means to be a decisor of Jewish law. Every question is about a human being, not about an abstract or religious idea. And, ultimately, our value is to be a holy people.”
How profoundly heartbreaking, how unforgivably enraging, that my brother — and so many others — are not treated that way.