In a Nutshell

https://catherinedianashullklatzker.medium.com/am-i-in-the-right-place-f2fbc64bf359

Am I in the right place? Do I belong here?

Rabbi P spoke Sunday about his older sister, born with Leigh Syndrome, a neurological disorder, apparently involving mitochondrial dysfunction. He mentioned her, not to appropriate her story, but to reference his own “lifelong journey of figuring out what it means to be her sibling,” to constantly relearn who she is, always curious about his own biases and assumptions.

It was a way in to introduce Rabbi Julia Watts Belser and her presentation on Jewish Disability Wisdom. (Loving Our Own Bones).  He caught me, though, because he wasn’t talking about his disability, he was talking about living with and loving a disabled someone that he deeply identified with, and there has seemed little enough space for us, the able bodied others who live and love them so deeply.

At first pass, it isn’t clear what draws me to disability awareness at all—I’m a pro at dissociation. Then I remember my blind baby.

When I wrote Range of Vision in 2013, it was clear that her blindness was hers and my experience was mine, a necessary distinction for both of us. I was careful to respect our boundaries, to report only what I could see and feel, how that bled into my own larger story.

Parents identify so strongly—we open our mouths when we spoon feed our babies, we hold our breath when they perform at school, we feel their fear and their joy, it’s in our bodies, our able-bodies.

I learned soon enough to run the gauntlet of the supermarket every week: all the unwanted, thoughtless comments, “What’s wrong with your baby?” Rude. Well-intentioned hostility. She hears you.

After her surgeries, our baby was a partially sighted child among many blind and partially sighted toddlers at the Blind Children’s Center, her preschool. I didn’t even think so much about disability in those years, other than her graceless exclusion from a little synagogue summer program, where she was too “different” from the other preschool kids. Then I remember photocopying all her schoolwork in extra-large bold print, including her cello sheet music. Then I remember her Orientation & Mobility Training so she could cross streets safely, find her way to classrooms. I noticed she was memorizing everything.

It was secret for a long time, that she was trying to “pass” for sighted to avoid being bullied.

Then I remember not getting it, her world.

A lot followed that. Ask me about her bat mitzvah. Oh! I thought as I saw her face looking out at the congregation, not down at the Torah scroll in front of her. Of course. She had studied from the large print, but couldn’t see the actual Torah. She had memorized everything, all of it.

It’s still not clear what draws me to disability awareness. Then I remember how our family friend Jerry W ז״ל asked me to co-chair his Federation agency’s commission on Jews with Disabilities, and I said a conditional yes. I had zeroed in on accessibility. I wanted to have sign language interpreters at services at Valley Beth Shalom and somehow did put it together, coordinating with contacts established with Temple Beth Solomon of the Deaf in Arleta, California. (We especially loved Art, don’t know if he still interprets.) This was in the 80’s. I’m not an organization person, but I did want to see that one thing. We had a limited budget that finally allowed us to schedule sign language interpreters for bar and bat mitzvot, offering families the option to donate and defray that cost.

At some point, since I was in Nursing School, I asked my husband to attend some of my Disability meetings for me, and when I was studying for my RN Boards he officially took over that committee position at VBS while he was also volunteering at Shaare Tikvah on Sundays.

I anticipate accompanying my husband as caregiver on his dementia path, our next disability challenge.

I don’t think about my own disability at all. It’s simply a way of being, and maybe many walking-wounded feel this way, maybe many former Dissociated, complex PTSD women and men just figure out how to “pass,” to memorize how to appear normal. It’s invisible. I think we are mostly quiet and work on finding compassion for ourselves. On loving our own bones.