Monday, February 16, 2015

Is Church Only for the Neurotypical?

In America, an English-language Jesuit magazine, Mary Berth Werdel (a prof at Fordham) has a powerful essay about church and her autistic son. She begins with diagnosis and all its complexities, a story I've heard many times from many parents (which doesn't make this story less important or well-written!), but I really want to focus on the church issues.
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.

4 comments:

Janice said...

Autistic Youngest developed an aversion to one stained glass window at our church. Even maneuvering our arrival and seating to never see it failed to assuage her panicked response. We gave up going to church. I regret that but nothing else seemed to work, so we sit down frequently for thoughtful exchanges about theology and ethics: subjects about which she'll happily converse at length.

David Perry said...

Thanks Janice. Exactly.

Luna said...

I have a lot of feelings about this one. Most of 'em painful. :(

One of my kids was too anxious for church. Mostly because I couldn't get it through people's heads that they MUST NOT touch her. Very kind, well-meaning old women were the worst. They'd touch her shoulder, her hand, whatever, and being social enough to know she shouldn't scream at them, she'd freeze up and refuse to talk. Over and over, I would tell people not to touch her. And they'd "forget". So I stopped making her go.

My middle child has severe autism. He's non-verbal, highly noisy, and very hyper. He's also allergic to a LOT of foods. Despite his disabilities people would shush him (good luck with that), cluck at me, give me dirty looks, or pointedly suggest we'd be more comfortable in the cry room. One church was kind to us. Until he nearly knocked over the Christ candle during a service. But he was not included. He was tolerated.

My youngest is on the spectrum too, but very high functioning. He doesn't tolerate noise well (so coffee time is out of the question). He's allergic to many foods. One church made Sunday School food-free for him. That was lovely. Then they changed things up and there was food everywhere, for every service. Tried a new church, things were going well. They knew about his allergies. Then I found out they use food for a lot of things, and just tell him not to touch it. Seriously? That's their idea of inclusion? Making one kid sit alone while the others eat M&Ms? And when I broached the topic of bringing my other son, it was pretty clear he was completely unwelcome. Which is truly pathetic, because I found out that the minister I mentioned it to also has an autistic son. :(

I just want to take my kids and go worship with other people. Is that really too much to ask?

David Perry said...

Thanks Luna. So challenging when our communities, whatever they are, secular or sacred, close themselves.