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.
Memoirs of a Jewminicana 
I am so unreasonably excited at shuls where there are built-in shtenders! There is at least one shul in Teaneck that has padded seats AND built-in shtenders… it's totally amazing.
Stretching is so necessary that I do it without even noticing it – All the time. It's just part of how I function. I don't worry what people think anymore.
As for sitting/standing…. I felt REALLY self-conscious on Yom Kippur when I couldn't stand for shemoneh esrei. But at least people probably thought I was feeling weak from fasting. It's worse on a normal shabbos when I can't stand for it, or for the Torah. But you know what? Anyone who is in shul judging people on a holy day can go stick it where the sun don't shine. It's poor behavior for a JEw to be judging other Jews who are in shul to try to connect with Hashem. Why are they paying attention to / judging us when they should be davening? Fortunately no one's ever said anything to me. Probably because I'm a white Ashkenazi Jew who most people know / assume is not a convert.
Life was so much easier when I used a cane – I choose not to now because I don't really need it most days and I found it was really messing up my back to be leaning to one side. But it was a relief for my disability to be visible (except when, you know, it was a burden for my disability to be visible. Which was often.)
I *so* hear you on this stuff.
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(and to be clear, I am grateful as all get-out for not needing a cane most days now. Because it means my pain is way better. But I miss not having to explain myself when I needed accommodations of various sorts.)
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It's not so much that I care what people think as much as I don't come to synagogue to be stared at, glared at or mistreated. Also, as you noted, I am much more visible, whether for my big hair, not looking Ashkenazi, or for being the wife of the rabbinic intern or all that plus, my yoga moves during services.
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Whatever happened to dan l'caf zechut (giving people the benefit of the doubt)? If someone's not standing and they don't look like they're lost re: where folks are in the siddur, the thing to do is assume they have a good, unadvertised reason why they're not standing. If you notice this, hold the door for them, if opportunity arises; they might appreciate it.
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This is heartbreaking. I know I will keep your story in mind when I'm looking around shul in the future and remind those who might get cranky with behavioral variations!
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Aliza, thank you so much for posting this! I got into a discussion with a member of my church group at school about having a service where we focus on disability awareness and work to make the worship service more accessible to those with disabilities, invisible and not. This post really got me thinking about all the things we should do to reach that goal.
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I have a friend with an autistic child and I know that their synagogue experiences have been tough, and he's a child. How much harder when you're an adult. People can be cruel, they don't even realize they're imposing something on others.
I am often looked at like I'm crazy when I tell people it's hard for me to come to synagogue regularly. I've never had a morning in shul that I didn't spend at least part of it feeling overwhelmed by a panic attack and where it was all I could do to keep from leaving. Where the night before there wasn't some meltdown from fear at being in a room full of strange people. Sometimes I sit after and just cry.
I've turned down so many meal invitations. Eating with strangers? No way – you guys are the only people I've ever felt 'safe' enough about, to feel comfortable enough to go eat with. When I try to explain, people roll their eyes, look baffled and tell me to “just get over it.” Really? Ya think? Gee, I've NEVER thought that to myself. Not once. The solution was so easy and in front of me all the time. “Just do it.” Sure. Okay. And maybe little green monkeys will fly out of my bu… never mind.
I think it would be even harder to contend with if people were openly being negative about it during shul itself.
“Problems For A New World. Things People Should Be Sensitive To But Aren't.”
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Even before I read ByTheBay's comment, I was thinking about suggesting that you consider bringing a cane, assuming that you live within an eruv. Making your invisible disability visible might help. One of the members of my minyan uses a cane painted in many very bright colors (and she often sits through parts of the service where one usually stands). A cane like that next to you would at least signal that you have some physical difficulties.
I take it that you are not attending shuls with many elderly people. Older people often have physical limitations. So I would expect that a shul with older members would tend to be more understanding of physical limitations. When my minyan with its core members in their 50's “merged” with the remnant of the membership of the aging host shul that it had met in for 25 years, it gained a couple dozen members with an average age of about 80. One of the things we added were some portable shtenders, which can be accommodated in any location since we use a room with only folding chairs.
We did however draw the line in refusing to use a regular microphone on Shabbat and Chag as requested by the elderly shul members with the poor hearing typical of the aged. But we finally decided that we could allow a so-called halachic microphone system that sends the signals to headsets so at least the rest of us don't have to hear the amplified voices.
The son of one of our members who is now a teenager is autistic. He is verbal, but his behavior is often quite bizarre and sometimes disruptive and sometimes disconcerting. But I will always remember how movingly his mother spoke at his bar mitzvah about how much she valued the fact that our minyan was willing to accept people such as her son who are “different”.
It's not that there have never been times when people in my minyan have cast disapproving looks at people for sitting through the Amidah or having unusual behavior or appearance. But the important thing is the general belief of the congregation that acceptance of everyone, no matter how different, is desirable and something to strive for—Ahavat Yisrael is a commandment after all.
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Aliza, my husband has Fibro, although his seems milder than yours. I'm so sorry.
Invisible disabilities just SUCK. Have you considered:
-wearing a t-shirt printed with “Why YES, I AM disabled, thanks for asking!”
-occasionally carrying a cane so as to make your pain “visible”
– bringing a taser to use on anyone who gives you a funny comment so they can “feel your pain”? (ooh, that won't work on Shabbat, will it?)
😉
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When we invite people to stand at our Havurah, we have peer pressured all the service leaders to say “Please rise as you are able.” I sometimes feel like it's unnecessary. After reading this? I am so glad!
My husband picked this up for his Tumblr and said, “Have you heard of this person?” Ha ha! Yes I have.
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I don't know how you feel about doing this, but have you considered putting yourself on the shul's refuah list long-term? This might be supremely awkward and cause Serious Questions leading to ignorant advice you may not want to deal with, but it might also raise awareness. People might get a Clue. But it could also backfire. I think if I was in a community where I otherwise felt welcome, I wouldn't have reservations doing it.
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Unfortunately, my shul doesn't publish such a list in their weekly bulletin.
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my Rebbetzin doesn't come to shul very often, or she didn't use to. She would visit her father in the nursing home instead…
i don't know if this is a good suggeston or a bad one… but have you thought about attending services in a Jewish nursing home? They're shorter, and the residents love the company. you would brighten someone's day, and well, lighten yours as well
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It's amazing how important it suddenly is to other people to pay attention to our every move when we act contrary to the “culture.” I always wonder why it's so important for people to judge me when all I want to do is be present with God in a communal setting. Some people only get it when “they” becomes “me.” Time for the rabbi to learn about inclusion and give that sermon from the bimah that directly addresses the attitudes that stand as barriers to meaningful participation. Also time for your congregation to start a committee on inclusion so that there is a structure and a means to continue on long past the sermon. We have to be intentional. Yes, Jewish values and our text promotes inclusion, demands inclusion. The reality is that it doesn't just happen. I hope that you continue to attend services and that you can do so in peace.
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