It’s JDAIM – so what’s that?

JDAIM is Jewish Disability Awareness & Inclusion Month.

Jews have been celebrating JDAIM in February for the past ten years. It’s a yearly reminder that we want our synagogues to be, in the words of the prophet Isaiah, “a house of prayer for all people.” (Isaiah 56:7)

I’ve been observing JDAIM this year by dealing with a bunch of disability challenges.

Disability is a tricky topic. It’s very tempting to climb on the “heroic crip” bandwagon, to tell inspiring stories and post a bunch of rah-rah stuff. However, that isn’t about the real lives and real situations of Jews with disability.

The fantasy: I’ve got my scooter, I can go pretty much anywhere, and life is always good. See the rabbi drive up, get out her scoot, and go!

The reality, lately: Can’t sit comfortably in the car. Can’t lift the scooter. Chronic back pain, sciatica, and fatigue are kicking my tuches. Sitting too long at the computer makes everything worse. My 50% hearing is now down to somewhere less than that, but the auditory processing disorder still makes hearing aids a bad idea.

So here are my awareness and inclusion messages. They are phrased as mine, but they apply to many other persons with disabilities, as well:

  1. God bless my congregation for offering streaming Shabbat services over Facebook. I can “attend” even when I can’t attend in person. It isn’t as good, but it is so much better than sitting home wishing I could be there.
  2. If I ask you to repeat something once or twice or even a third time, do just that: repeat it. Don’t restate it, just say exactly what you said but a bit louder, or or a bit clearer, or take your hand away from your mouth.
  3. If I get to an event, please don’t tell me that I look like I’m “doing better” and ask when I’ll be healed. I am having a good day, but I am unlikely to be healed. And actually, I’m OK just as I am.
  4. Don’t abuse “handicap” parking spaces. Don’t use them unless you have a blue card and please don’t crowd them. Don’t park in the loading area next to them, because then some of us can’t get out of the car.
  5. If someone displays the blue card to use those parking spaces, just assume they need it, even if they don’t look it. Many disabilities are invisible.
  6. Please don’t give medical advice or ask nosy medical questions unless you are my doctor. Really. Even if you are sure you have the cure.
  7. Do not improvise “helping” me. Ask me if I need help with something, then believe what I tell you.
  8. Yes, I am at “child height” when I’m on the scooter. That is not an invitation to pat my head or adjust my clothing for me. When people do those things, I spend energy being annoyed that could go to many better uses.
  9. Encourage your congregation to stream services and do other things to make services more accessible to everyone. Is the building accessible? Is there a procedure for making accessibility requests?
  10. Remember that we’re all in this together. There have been Jews with disabilities since the very beginning. The patriarch Isaac was seeing-impaired.  Jacob had a limp. Moses had issues with speech. King Saul had bipolar disorder. Stuff happens. What matters is how we deal with it.

A Refuah for the Rabbi

Image: Rabbis Jacqueline Mates-Muchin and Ruth Adar carry Torahs for Hakafah. Photo by Linda Burnett. All rights reserved. A “Refuah” is a healing.

This past Friday night I had the pleasure of co-leading the Shabbat service at Temple Sinai in Oakland, CA. The occasion was our Access Shabbat celebrating Jewish Disability and Inclusion Month. The Access Committee encouraged me to lead the service from my mobility scooter, feeling that it would be a powerful statement for inclusion.

It was, indeed, and a powerful personal experience for me. I am primarily a teaching rabbi; I haven’t regularly led services since 2013. A big part of the reason for that is that standing has caused me excruciating pain for years. As a rabbinical student and then as a “baby” rabbi in my first pulpit, I chose to hide the pain and simply endure it during services which sometimes lasted hours. I’d finish a service drenched in sweat, trembling and barely able to think. As a result, I dreaded leading services and stopped doing it when my body could no longer pretend.

I did not know that Rabbi Mates-Muchin had planned a Hakafah (procession with the Torah) in celebration of a year with our new Torah scroll.  I could hardly believe it when she handed me the sefer Torah; I wept as I carried it around the congregation. I had not held a Torah scroll in years, since I couldn’t climb the stairs to the aron [cabinet] where it is kept and could not lift it down, much less walk with it.

So in addition to a public statement, leading this service was a private healing for me. I hugged the Torah and shared it with the congregation – a physical metaphor for my life’s work. The scooter did not detract from it in any way; instead, it made the moment possible.

There is no rule against leading a service on wheels. In a Reform congregation, the electricity for the scooter is not an issue. I had been my own oppressor, trying to hide my disability because I feared discrimination.

That night, with the Torah in my arms, singing with the congregation, I felt healed and whole.