A longer version of this article was originally published in the Canadian Lutheran.
As a family living with autism, we’ve experienced both pain and blessing through the Church, but overall I’d describe the Church’s attitude toward disability as “benevolent indifference.” There’s a general feeling of good will toward people with disabilities and their families, but not a lot of thoughtful reflection going on. When we think about marginalized people, we often think in terms of people “out there” who struggle with poverty; we don’t often consider the marginalized within our own congregations.
This has been matched by my own ambivalence. I am not sure what role the Church should play, or what I can ask of it. As I think about what I have needed, I realize it has changed over time and circumstance. Here are four windows into my world to give you a sense of what helped, what may have been helpful, and what I needed.
When the diagnosis first came, I was reeling. I felt inadequate and scared for what the future would hold.
I was marked as different and felt vulnerable. And I felt like a failure, because having a disability went against our church’s idea of prayer and God’s healing.
What I needed: I needed stability and inclusion. This wasn’t the time for people to helpfully suggest stepping down from committees because “you should focus on your son.” I needed the Church to remember who I was and what I could contribute, instead of kindly assuming I was too busy to be anything but a mom. I also needed people who would problem solve with me and help me figure out how to deal with specific behaviours. I appreciated small kindnesses, like a friend dropping off tulips, because there was nothing she could do, but she figured “beauty would help.”
One of the most important things I needed during this phase was dignity and confidentiality. When we shared the diagnosis with our church, we realized that one of the children’s ministry volunteers had already given him a diagnosis without our knowledge. The Church is a community, and people can sometimes feel like they’re just talking to “family,” but when it comes to personal health information, we do well to remember professional standards.
What I didn’t need: There is a time for thoughtful reflection on how God sees disability and how a person can grow through adversity. Here’s a tip, though: when a family is reeling from a diagnosis is not the time. It seemed like everybody wanted to explain God to me. We also had a lot of people talking about miracles: prayer, supplements, diets, etc. While I appreciate and have experienced miracles along the way, what I needed to get through the diagnosis was courage to lean into reality, not avoid it.
Times of Crisis
My son, Noah, was hit by a car when he escaped from the house in the middle of the night, almost drowned when he jumped in the river, and accidentally set our house on fire. During these times, the Church was at its best, delivering meals, offering compassion instead of judgment, and offering us furniture as we moved into temporary housing.
I needed to be able to receive meals without an expectation that I would send a thank you or remember which dishes went with which person, and not have to describe the trauma over again, with my child listening. I needed any kind of sign that we weren’t alone and, most importantly, someone to ask how I was doing six months later.
Noah isn’t going to celebrate many milestone events. There will be no marriage, no children, no job, and thus, no retirement. When my older son turned 13, we had a “transition to manhood” party, where he did one of the readings at church and had a dinner to celebrate his entry into adulthood. When Noah turned 13, I had a long talk with my priest to see how we could mark this very different entry into manhood. He said, “What’s important is that we claim him as part of God’s family. We can speak for him.” So we baptized him. It was incredibly powerful to have the Church stand around my boy and declare him to be part of us.
As the Church, we need to ask these questions: What can we celebrate? What modifications need to be made? What are the spiritual implications of our inclusion? (We were aware that Noah could not be baptized in our old Anabaptist church, because he would have had to give verbal testimony). Churches need to struggle with these questions, ensuring that each member feels seen, heard, and loved.
Into the rest of life
The Church is often able to rise to the occasion during short-term crises, but what happens when you are living with ongoing stress and constant need? The biggest gift the Church can offer is to see: to look for opportunities where my son can be involved, to notice my other son who tries desperately to not be a burden on anyone, to remember that my husband and I are individuals with gifts.
I need to know that Noah is a gift to the community, and when he is unable to be in church, it grieves more than just me. When I think about the role the Church has played regarding autism in my family’s life, the thing that has struck me most is the church’s silence. Autism has been a long trip in the desert for me and, for the most part, a solo journey.
Yet although it’s often been lonely, the gift that the Church has given me through its silence is that I’ve had to lean into God. Church didn’t buffer me from the deep and painful work of learning to forgive myself, let go of control, and receive love from friends, family, and strangers. That work has been transformational. Benevolent indifference, too, has been a gift.
Kalyn Falk is a spiritual director and former warden and artist-in-residence at st. benedict’s table. Her book, Mother of the Year and other Elusive Awards, was published in 2013. She is pictured here with her son, Noah.