Every Sunday afternoon, my daughter and I join a Zoom call with her friend and her friend’s mother, who live a few hours away, for a special moment we’ve come to call “God Talk.”
My daughter Penny, 17, and her friend Rachel, 18, have Down syndrome. A while ago, Rachel saw us praying before meals and asked if she could join us. This led to some conversations about what it’s like to follow Jesus. And finally, as Rachel’s mother, Ginny, told me a few weeks later, every night Rachel would hold out her hands and say, “Thank you, God, for having us.”
That’s when the four of us decided to start reading The Jesus Storybook Bible together via Zoom. In our first talk, I asked the girls how God sees us, and without hesitation, Rachel said, “God loves us so much.” The truth of God’s love and welcome seemed to sink into her being, as if we had simply given words to something she had unconsciously known all along.
I am a 46-year-old woman with a master’s degree in theology and credentials as a pastor, and I learn something new every week by reading and praying with Penny and Rachel. They have taught me a broader way of encountering God through the Bible.
I think about the time Penny hid her face when we moved from the story of the Crucifixion to the Resurrection because, in her words, she didn’t want to reveal “the best part.” Or when we read about Jesus asleep in the boat during the storm, Rachel related the chaos of the raging waters of the sea to Pharaoh in Egypt and the serpent in the garden.
At the time, I was listening to a podcast with BibleProject’s Tim Mackie, who underscored Rachel’s spiritual vision in seeing the serpent, Pharaoh, and the sea as symbols of chaos.
Mackie mentioned that most Westerners do not have a very developed symbolic imagination. Having been raised and trained in an analytical exegetical framework, I am familiar with the historical context of the Bible and its hermeneutical and theological truths. Rationalistic thinking helps and hinders our reading of Scripture. But this approach can miss some of the more intuitive ways to approach Scripture and prevent you from making these kinds of connections.
I thank Penny and Rachel for increasing my ability to understand the emotional and symbolic power behind the words on the page.
In the early days of Penny’s life, I remember a friend telling me, “I can’t wait to see the ministry Penny will have.” It hadn’t occurred to me that Penny would have her own ministry. Her words helped me look for her gifts and not just her needs as she grew.
But “God Talk” with Penny and Rachel has helped me recognize that their spiritual lives themselves are a gift. While I can identify ways and places where these two young women could minister to others, I can also simply receive grace, truth, and wisdom from who they are.
My experience with Penny and Rachel made me wonder about the spiritual lives of other people with intellectual or developmental disabilities. So, I set out to interview several other people with Down syndrome, autism, and similar conditions.
Image: Courtesy of Amy Julia Becker
rachel and penny
I had a brief conversation on the phone with Marcy Lesesne, a 54-year-old woman who lives in Durham, North Carolina. Marcy has ataxia, which in her case includes intellectual disability. She had heard that Marcy loves to pray and read the Bible and she wanted to ask her about it. While I did not receive a coherent story or portrait of her spiritual experience, Marcy told me pieces of her life: that she had an accident and uses a walker, that she needs to wait on the Lord, that she has not experienced answers to prayer, that she feels anxious and desiring healing.
I also met over Zoom with Josh Catlin, a 42-year-old man with a dual diagnosis of Down syndrome and autism. He told me that he feels good when he reads the Bible and, as we talked, Josh read me Isaiah, the Psalms, and the Gospel of Matthew.
That was about the extent of Josh’s description of his own spiritual life, and then his family members helped fill out the rest of the picture. According to his father, Pete, the only book Josh reads is the Bible, and he reads it daily with devotion and passion. He described entering Josh’s room and finding him with his hands raised in a posture of worship.
At the end of our call, his brother Scott said, “Josh is the most spiritual person. Not like a pat on the head from the special person.” Scott asked me if he knew the Proverbs 3:5–6 passage about one who trusts in the Lord in everything. He continued: “Josh is the epitome of that. “His ways are straight.”
I began to recognize how difficult it is for me to articulate something true about the spiritual lives of people with intellectual disabilities and capture those truths in their own words. Many express themselves with minimal or no spoken words. And even among those who could communicate verbally, asking them to reflect and put into words their lived experience over Zoom was nearly impossible. Online interviews weren’t going to give me quotable phrases or concise explanations.
I called John Swinton, author of Become friends of time and professor of theology at the University of Aberdeen, who helped me consider the root of this problem. He explained that the difficulty with trying to collect stories like these is that we run the risk of imposing or projecting meaning onto the experiences of others. And yet, we also run the risk of denying or ignoring those experiences if we don’t try to convey them at all.
Swinton suggested that the best way to learn about the spiritual lives of others (especially when they cannot use words to convey their experiences) is to form what he calls “narrative communities.” We may impose or project meanings incorrectly, but we can bear witness together to the life of the Spirit among us when we tell the story of God’s activity in community.
Swinton and other leaders in disability theology also point out that spoken language is not the only way we can communicate our spiritual lives. Paul even writes that the Spirit of God groans without words for us (Rom. 8:26). How might we receive the silent groans of our fellow human beings as an expression of a deep knowledge of the Spirit of God?
I realized that I can’t convey much about Marcy and Josh’s spiritual lives, at least in part, because I don’t live in community with them. The truth I can offer comes not only from them but also from the people around them who can speak from their lived experience together.
Most of us live in spaces (and worship in churches) apart from people with intellectual disabilities. Even within churches that intentionally include people with IDD, they are often placed in special programs rather than being welcomed as full participants within the church.
In other words, most of us do not form narrative communities that welcome and reflect the gifts and abilities that neurodivergent or non-verbal people offer. The problem is not in the limitations of verbal or intellectual expression but in the restriction of our relationships.
I receive the gift of being in community with Penny and Rachel, as well as other people with intellectual disabilities who are members of our own local church. Knowing them, as well as watching them grow spiritually, has expanded my awareness of God’s tender care and loving kindness.
They have offered me simple expressions of faith. They have challenged me to live in love. And they have helped me see that I cannot write about the gift of their spiritual lives unless I know them intimately, a much deeper knowledge than a 30-minute phone call or Zoom call can allow me.
These types of relationships will occur only when local churches seek out families and individuals affected by disabilities and “compel them in” (Luke 14:23), with a stance of receptivity and trust that they are equal and crucial members of the body. of Christ.
In her sermon on 1 Corinthians 12, the passage where Paul says that God has given more honor to the parts of the body we consider weaker, disability theologian Jill Harshaw speaks to our need to recognize the importance of all members of the body of Christ: “What if we have excluded ourselves from a way of doing church in the kingdom? What if we need [people with disabilities] To include us?
Jesus anticipates Harshaw’s questions when he is invited to dine at the home of a “prominent Pharisee” (Luke 14) for what is supposed to be a celebratory meal. As soon as Jesus sits down, among a group of other religious people, he begins to criticize everyone present. He tells the other guests that they chose the wrong seats and tells the host that he invited the wrong people.
Jesus exhorts the host to invite “the poor, the crippled, the lame and the blind.” He goes on to portray the kingdom of God as a meal at which those most likely to be excluded from our religious communities are offered an intentional invitation to take a seat at the center of those communities.
The religious elite of Jesus’ day did not recognize the importance of sharing the Sabbath meal with those who were on the margins of their social groups. Likewise, many believers today do not recognize the beauty, love, and testimony of people with intellectual disabilities in their local churches.
We need these same people at our table. With them and through them, we can all better grasp the expansive welcome of God’s love.
Amy Julia Becker is the author of four books, including her most recent, Being healthy: an invitation to wholeness, healing and hope.
