In times of stress one often turns to faith for guidance. But my connection to organized church was struggling. Peter could not handle the stimulation of church. When it came time for the bells to ring during Mass, Peter would cover his ears and scream. In an attempt to help Peter understand the bells, the pastoral associate let him touch them after Mass. But the next Sunday the fear response was the same. One thing was clear: The bells I heard in my ears were not the same sound Peter was hearing.
So we bought Peter a headset he could wear during Mass. It was not plugged into anything but something to dull the senses. We had many looks of disgust from parishioners who I can only assume thought Peter was listening to an iPhone. But I was not going to let other people’s unawareness keep my family from Mass; Peter’s fear, maybe. One Sunday we were in the car on the way to Mass when Peter started screaming, “Mommy do you have my headset?” On a scale of 1 to 100, his anxiety at that moment was a 99. I was forced to reflect. What was I doing? How is Mass helping Peter? What place of horror and fear is he associating with church? What was he learning about his parents and their ability to keep him safe? What was I really asking of him?
First, there’s the headphones and the states. I also noticed a similar situation in this piece on Judaism and special needs.
My own family left the first synagogue we joined because we felt unwelcome bringing a baby to Shabbat services (we got narrow-eyed old-lady hissy faces if Josie so much as clucked) and no one welcomed us to the cliquey family service. I can only imagine how much less welcoming the shul would have felt to a family who had an older child with special needs. In our current shul, however, such families are welcome, and the general vibe is infinitely more inclusive. Embracing difference benefits all Jews, not just Jews with disabilities.
Notice how the headphone issue and here the description of the “clucking” are both about using hostile stares to reinforce social norms, norms to which these children cannot conform. That’s the kind of microaggresion I wrote about for the New York Times. These little pains hurt, when stacked on each other.
Second, though, and back to Werdel, is the significant evolution of her thinking. She moves from trying to make it possible for her son to do the things she finds important, to trying to see the world through his eyes. This is vital and so hard.
Werdel ends with a plea for inclusion:
I no longer pray for normalcy. I am starting to believe that praying for and including that term sets up a system that by its nature demands exclusion. Instead I pray that Peter and I will grow more relational. I want Peter to feel love and express love. And I pray that one day Peter and others like him will be met by a living church that meets all with relational community and unconditional love.
I always like to talk about inclusion, not same-ness. That’s the pathway forward for churches that want to do better, and of course there are many people in all faiths who are, in fact, trying to do better.
In the meantime, though, I leave you with this: If your church is not explicitly and pro-actively (not reactively) inclusive, it is betraying any claims to universality.