After finishing “‘Invisible Disability’ Kids Are Being Left Out”, I cried. It wasn’t the first time I’d read a story like this, about Jewish children with disabilities being pushed to the margins of the community, but every time, I find my heart sags in my chest and all my issues as an adult with invisible disability (fibromyalgia) overwhelm me.
Most synagogues have a wheelchair ramp but that’s where inclusion for people with disabilities ends. I’ve watched a kid with visible disability act out at synagogue. Few people make comments but their faces register that discomfort that I know the mother has seen time and time again on other people’s faces and I silently pray she doesn’t notice this time.
But when a kid with an invisible disability acts out, people don’t bother to hide their discomfort or distaste. So you can imagine that when an adult with an invisible disability “acts out,” other adults can be cruel because as an adult, they are certain that “you should know better.”
My husband is studying to be a pulpit rabbi and as his wife, I am “expected” to make an appearance at synagogues that are not set up to handle my invisible disability. Synagogue used to be a warm and inviting place to me but once I got sick, synagogue became a nightmare, an obstacle course.
I cannot stand and hold a prayerbook in my hands without experiencing excruciating pain. (I can barely hold a book when I am sitting.) Instead, I sit through the entire service (usually Friday services because Saturday services are unbearable) and more than once, people have made callous remarks about this. “You’re supposed to stand for the Torah!” someone spits at me snidely. As if I have a choice of whether or not to stand at that moment. As if my legs wouldn’t buckle if I tried.
Even sitting in those awful chairs (doesn’t any synagogue have comfortable chairs?) hurts so bad that for moments at a time, I just sit there, not praying, but just trying to be present, trying not to cry out from the pain. Funny enough, people are more likely to stare at you in synagogue if you’re sitting and not praying than they are to stare at you if you’re talking. I know this because sometimes I just sit there at synagogue and talk not only because I haven’t seen my friends since my last distant synagogue visit but also because sometimes, it distracts me from the pain.
I daydream of synagogues with plush chairs with built-in shtenders to hold up my prayerbook but even at these synagogues, my disability would not be entirely invisible. Because sitting also hurts, I often have to stretch and crack my bones during services and so of course, people have made callous remarks and even glared at me for this. Even after I explained why I was doing this.
Even knowing about my invisible disability, people have told me to leave services if I can’t sit through them without my “distracting” stretches. They’ve asked me to sit in the back. They’ve added that I should only come back when I feel better…except that because I never “feel better” if I took their advice, I’d never come back. And I can’t help but think that if I didn’t come back that they would be more comfortable. Because disabilities, visible or invisible, make people very uncomfortable.
The moments when everybody loves synagogues, when everyone’s voices are joined together into one, when people are clapping and banging away happily, are the moments when I remember that I forgot my earplugs and I know that by the end of services (if I can make it that far) I will have succumbed to a sensory overload that makes everything sound louder, harsher, painful to my ears.
But if I explained this to the friends who are kind enough to come over and greet me after services, I would probably (and I have) get called a “hypochondriac” so I just grit my teeth, smile and say “Hello” and as soon as they are gone, I hobble out of the synagogue, leaning on my husband for support.
Synagogue is an important part of Jewish life, not just for praying, but for the interactions and friendships you build with the community. I know that my world is smaller because I cannot attend synagogue with any kind of regularity. I know it is even smaller because I cannot host meals with friends without great cost (financial and physical). And so slowly, I feel pushed to the margins of the Jewish community.