Accompanying disability

LOUISVILLE — The Rev. Dr. Topher Endress, author of a book published last month by Westminster John Knox Press, “Accompanying Disability: Caretaking, Family, and Faith,” made a recent appearance on “A Matter of Faith: A Presby Podcast,” hosted each week by the Rev. Lee Catoe and Simon Doong. Listen to their hour-long conversation here.

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Endress said he switches his language sometimes from “person who has a disability” or “living with a some ailment or chronic language” to “disabled person.” “A lot of autistic people name themselves as autistic as opposed to ‘person with autism,’” he said. “To name our identity first is to say, ‘without autism, I wouldn’t be who I am,’ or ‘without Down syndrome, I wouldn’t be who I am.’”

“I think we’re at a point in a lot of our denominations where we’re doing a much better job of believing people’s stories,” said Endress, the associate minister at First Christian Church in Columbia, Missouri. “I’m going to trust that you know yourself best and what you’re sharing with me is what I should reflect back.”

“But I don’t know that we always do a great job of letting that [perspective] reshape and reform ourselves in a deep and meaningful way,” he said. “I think if we don’t have that, I’m not sure that we’re nurturing a relationship as much as we are welcoming people and still keeping them at arm’s length.”

To “truly love” those with a disability is “to let them disrupt our lives,” he said.

“I have family members who were or are disabled. I have lots of friends who have identified as disabled or a person with a disability,” Endress said. “I know I would not be who I am today if they were not in my life.”

In churches and in other spaces, Endress sees “a helpful understanding of the innate diversity we all carry. It’s becoming more positive and welcoming,” he said. As that understanding and welcoming grows, “we become more in tune to being reshaped by our friends with disabilities” and “being more willing to be called out and named: ‘Your behaviors are problematic in these ways. Can you adjust and say, yeah, I will acknowledge that and repent of that?’” We can respond with, “that was an oversight” or “that was a failing,” and “I’ve got to do better or be different,” he said. “Being shaped and reformed by those relationships is such a key aspect, especially for those of us on the ally side.”

“I think when we do that, that’s what love is,” he said. “We love each other by giving ourselves away, letting ourselves just be made anew, just as we might hope they might do for us,” Endress said.

There are practical things we can do, including:

• Being willing to adjust our communication strategies. Many of Endress’ friends with disabilities are active on social media “during a time I don’t want to be on social media,” and yet “it’s a safe place for them to organize” without worrying about being exposed to Covid and other dangerous viruses.
• Allies and friends can adjust the pace of their life. “A lot of my friends with disabilities are incredibly accomplished and fantastic and witty,” he said. Others have to live their lives at a pace “the world is unaccustomed to.” The desire “is ingrained in the American culture to rush around everywhere. You just need to die to that and accept rest and slowness as part of the natural ebb and flow of life.” There’s “something moving and powerful about walking slower than you want to and going at the other person’s pace. It builds trust” and says, “this person knows me. I can let my guard down and tell this person when I’m in pain.”
• We all can learn more about disability history. “In the first century of the church, disability was an opportunity for charity and for giving,” he said. “The church organized itself around caring for the outcasts of society in these really powerful ways that modeled their dying to the empire and dying to this desire to horde all their wealth. They gave it away to people who could not respond in kind.”
• Where needed, interrogate scripture, Endress suggested. “That gives space to let the disabled friends among us rebel against some of these scriptures and say, ‘I don’t know why blind Bartimaeus had to be healed of his sight. I’m blind and I’m not healed of my sight.’” For Endress, one of the worst things we can do with scripture is “to read it and say, ‘I don’t understand it and I’m not going to deal with it,’ and then walk away.” The way disability is sometimes catalogued as punishment in scripture, “if we just leave that and let it ride, then we’re just perpetuating those same notions. We’re not helping the people in our communities and ourselves move forward and dive deeper into what it meant back then and how it developed that significance.”

Endress co-wrote “Accompanying Disability” with his disabled father, who died in 2020, just before the onset of the Covid pandemic. “Every other chapter is my dad’s reflection, written almost exclusively by him,” Endress said. “There’s not enough first-person narrative in disability theology and in the church. That’s where this book came from: his newfound appreciation for the way his story could impact other people.”

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Had he lived to see the end stages of the book, “it probably would have taken on a more didactic feel, where we were teaching the church, ‘hey, here are five steps for someone using a wheelchair’ or ‘here are eight steps to make your church more accessible.’”

“When we were talking about disability theology,” Endress said, “I had the training but he had the lived experience.”

Sharing our stories can be important, he said, “but at the end of the day, we’ve got to break down some curbs. We’ve got to build auto-captioning for our [church] service. We need to set out noise-cancelling headphones if we’re going to be playing the organ real loud because we’ve got sensory-sensitive people. There’s a lot of important work to do, and a lot of it is low-hanging fruit.”

People may “feel lost” as they care for a friend or loved one with a disability, he said. “They just want somebody to say, ‘I don’t know what you’re going through, but you’re not alone.’ Share the book widely,” Endress told the hosts, “or share another book, or share a cup of tea. Just share something.”

New episodes of “A Matter of Faith: A Presby Podcast” drop every Thursday. Listen to previous editions here.