What Families With Disabilities Wish Their Rabbis Knew

Ever read an article that just sticks with you? One that you are thinking about days and maybe even weeks after you read it?

That’s what the article What Special-Needs Families Wish Their Pastors Knew has been for me. It immediately and deeply resonated. Of course, I swapped “rabbi” for “pastor”, but yeah, it might as well have been written for synagogues.

Not all synagogues. Just as you can’t drape this piece like a blanket across all churches, neither can I make the broad statement that it would apply to all synagogues.

But it certainly applies to many.

I read this and I want to yell, “This is exactly the type of piece that must be required reading in our seminaries!” Because, really, don’t we want to get at the root of the issue and create caring, compassionate clergy who “get it” from the get-go – rather than spend so much time and energy later trying to help those same clergy members to adapt and change?

Here are highlights from the original piece, re-framed in the language of synagogue life and experience, with some of my own commentary tossed in:

“1. We are lonely. We often don't fit in with our peers with kids of similar ages. Our kids' needs keep us home more often (or at the hospital or at therapy appointments). But we long for community.” BINGO. This hits the nail on the head. So many of us in Jewish professional roles lament the woes of “Why won’t more people come to our events?” or “How do we get our religious school families to make synagogue and services more of a priority?” The answer is ALWAYS that there is probably so much more beneath the surface that we just don’t know. 

“2. We wish we could do more. Some [synagogue] activities just don't work for our families. Even when we want to be there, we may not be able to. (Personally, potlucks are the worst for us! James grabs fistfuls of food and has a hard time staying in his chair. He'll even drink from other peoples' cups or steal cookies if he gets a chance!)” How often are we asking families what they want? Or is it that we continue to plan things that we think they SHOULD want? How often do synagogue leaders think a potluck is the perfect way for a family to connect to the community? It’s critical for us to remember there’s always another point of view (and probably a few!).

“3. We know you can't control every [temple] members' reactions to our family, but you do set the example. How you talk about families like ours to your [colleagues], [lay leaders], and/or [staff] trickles down to how everyone treats us. If you welcome us with open arms and an accommodating spirit, the [temple] (for the most part) will follow your example.” Amen.

“4. How you talk about disabilities from the pulpit makes an impact on us. Are people with disabilities only talked about when they overcome obstacles or are healed? Do you use insensitive language like calling someone "crazy" or saying "there was something wrong with him" in your sermon? Your language can make us feel welcome or not. (And this includes the language of your staff.)” YES. Absolutely yes.

“5. The challenges we face as our children grow up change and evolve. What works for a three year old with autism doesn't work for a thirteen year old with Down syndrome or a thirty year old with cerebral palsy. We want to feel like a valuable member of the [synagogue] at each stage. We want our kids to be safe and loved, no matter their ages or abilities. We appreciate when you are willing to change and evolve with us.” Inclusion is ALWAYS a team effort. It’s a mindset and an attitude. It is a willingness to be creative and do what it takes to find success in each individual situation. 

How do we move toward the solutions? Can we get articles like this into the hands of clergy? Let’s move their thinking forward and give them the tools to effect powerful, lasting change.

And by the way, what’s missing? What do you wish your rabbi knew about your family with a disability?

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