God Can See My Son, Can You?
by Nina Mogilnik
I wrote God Can See My Son, Can You? for a presentation to congregants of my then-synagogue. It was February 2019, the calendar month designated as Jewish Disability Awareness and Inclusion Month, or JDAIM. I appreciated having been asked to speak, and shared my honest reflections about our family, our autistic son, our other children, and the Jewish community. Having had some time to reflect on that experience, I've come to several conclusions. One is that I hate "designated months." There are so many, it's nearly impossible to keep count. Hispanic Heritage Month; Black History Month, Breast Cancer Awareness Month, and on and on. What bothers me is the whole notion of confining issues and constituencies to a spot on a calendar, like reserving spaces in a parking garage. Communities, individuals, and diseases do not belong in reserved spots.
I understand the intention to focus on a given community or issue for a finite period of time, in order to highlight it and bring attention and often money to bear. The problem is that it gives us a false sense of engagement with the community or issue. Once month X is past, we can forget about Hispanic Americans or breast cancer. Or, to bring it back to my particular experience, disabled Jews. And that's the core problem. People listened attentively to my remarks, and shared generous praise with me afterwards. None of which made a difference in my son's life, or in our family's life. In fact, we left the synagogue not long after, because we felt it was not a place that genuinely wanted to make space for my son and others like him. Shine a spotlight on us for a few minutes, sure. But do the real work of valuing our families, understanding our wants and needs, and trying to adapt and include us? Nope. We were a flavor of the month, and that was all.
Congregants got a sampling of autism, mental health, and other challenges from parents during JDAIM, but were not obligated--or even asked--to engage in any kind of soul-searching or change. I don't want JDAIM. I don't want Autism Awareness Month. I want a world--and specifically a Jewish community--that doesn't look at families like mine as a curiosity, but as integral and fully equal members of both the human and Jewish communities. That will take real work. And too few Jewish institutions seem willing to take it on. So listen to my talk. Feel moved, even. But know that your feelings change nothing in my son's life, or in his ability to be part of an embracing Jewish community. The same way endorsing a hunger charity on Facebook doesn't put food in anyone's mouth, watching the video of my remarks won't move the dial for my son, or others like him. Life happens in the real world. And real people need to make a real effort to change things for the better there. And not one month a year, but every day, for 365 days, every year.
Nina Mogilnik worked for decades in non-profit, government and philanthropy settings, doing work she believed did some good and no harm. She moved with her family from the suburbs to NYC after her autistic son graduated from high school at age 21. She continued to do some work remotely, but then realized that her real job needed to be (re) constructing a life for her son in his new home and city. She continues to write--as a blogger for The Times of Israel, for Medium, and occasionally for other publications. This is how she records/accounts for/shouts about/expresses and otherwise communicates the challenges and joys of living a complicated, sometimes heartbreaking, but always true, life.