Books, essays, podcasts episodes, and more that I think are worth your time, plus recent cultural news that I’m paying attention to…
BOOKS
BOOK: The Hospitality of Need by Kevan Chandler and Tommy Shelton
This book was the perfect companion for my time at Hope Heals. Kevan Chandler lives with spinal muscular atrophy, so he uses a wheelchair to navigate the world. He tells the story of admitting his own need and recognizing how that need can serve as a way to welcome others in need. Kevan’s friends have cared for him in ways most of us fail to imagine. They arrange their schedules to help him use the toilet, bathe, eat, and travel (including a two-week trip to Europe without his wheelchair).
Kevan reflects beautifully on the universality of need as well as the universality of being ones who are needed. He writes:
“Needs shake us, whether they belong to us or to someone else. If we’re in proximity, they can change us. They can cause us–force us–to slow down or keep up, to think and act differently from our norm. They can pull us out of our comfort zones and disrupt the ideal rhythms by which we usually function. They can either set right the broken or break the too-perfect.”
NOVEL: How to Read a Book: A Novel by Monica Wood
One of you recommended this to me, and I loved it, so thank you! It tells the story of a women’s book club—in prison. You can probably imagine the humanity that comes forth in this setting, so I won’t say anything more except to commend this book as a sweet, thoughtful story about reckoning with our mistakes and bad choices and living with hope and forgiveness.
NOVEL: Hello Beautiful by Ann Napolitano
This story spans decades in the life of a family of four girls in Chicago. It deals with topics of love and loss and misunderstanding and the need for hope and forgiveness and the unrelenting desire of the human ego to run away from who we really are and the unrelenting desire of the human soul to show up as we really are. The writing is beautiful, the characters are infuriating and delightful all at once, and I did not want this book to end.
Memoir: Life, Animated by Ron Suskind
Journalist Ron Suskind’s son Owen was diagnosed with autism at age three. Over the course of the previous year, Owen had stopped talking and seemed more and more withdrawn from the world. It felt to his parents like they were losing him. Owen remained interested in Disney movies. He watched them over and over. He recited lines from the movies. He learned to draw his favorite characters. Eventually, his parents wondered whether Owen might be using the films to communicate. He wasn’t simply mimicking lines. He was using lines that applied to how he was feeling, even if he didn’t have the words to say it. He was connecting, and communicating, and engaging purposefully with the world around him, albeit in an unusual way.
Suskind tells the story of their family in his 2016 book Life, Animated. Their journey to connect to Owen and provide the support Owen needs to learn and have friends and work all springs from this love of Disney. Instead of focusing on Owen’s deficits and all the ways he deviates from typical kids, they leaned into and celebrated what he loved most. Disney became the language through which they could understand and support Owen, and through which Owen could express his love in return.
The Suskinds started with delight on their autism journey. There was hardship along the way. They experienced grief in all the ways so many parents do—both the grief we don’t want to feel about kids who don’t meet our expectations and the grief of watching our kids endure rejection and misunderstanding and bullying. But love and celebration of who Owen is became a container that held the grief and hardship. Starting with delight gave them a place to return that honored their son and gave them a vision for a good future.
Suskind is a Pulitzer-prize winner, and he connects his tremendous writing skill and his deep love of his family together to tell a story of honesty and hope.”
In our own family, we’ve also learned to start with delight. Penny is 19 years old now. We still have a lot to navigate, but we’ve also learned some general principles about how to be parents of a child with a disability. We’ve learned to start with delight, connect to community, and take the next step towards a good future.
FILMS/MOVIES/DOCUMENTARIES
TV SERIES: Andor
We just finished season 1 of Andor, and it lived up to the hype. I am not a big Star Wars fan, but this prequel to the Star Wars franchise offers a thought-provoking meditation on human freedom. There’s complexity in the characters—the bureaucrats working for the Empire sometimes think they are doing everything in the name of what is good and true, and the rebels run the gamut from quiet resistance from inside the system and those seeking to overthrow it from the outside looking in. I started watching Andor on Jemar Tisby, PhD’s recommendation, so read his Substack here for more on why this show matters in our time.
TEDx | I’m not your inspiration, thank you very much | Stella Young
As I work on this next book, I’m returning to some resources from a while ago, including this Tedx talk by Stella Young. Young explains the idea of “inspiration porn,” images that objectify disabled people for the benefit of nondisabled people. As she says, “Disability is not a bad thing. And it doesn’t make you exceptional.” She says she envisions a world in which disability is not the exception, but the norm.
RESOURCES
RESOURCE: How to Slow Down and Be a Peaceful Presence When Tensions Are High
This short, thoughtful guide is all about how to slow down and stay grounded when tensions run high.
RESOURCE: DIGNITY TRAILER
I love seeing organizations use their imaginations to create a world of welcome and belonging. Watch this short video from Certain Hope Community in Michigan about the dignity trailer. “Designed exclusively for special needs families, this fully accessible mobile restroom is equipped with features built upon the beacon of inclusivity and compassion.”
PODCAST
EPISODE: Xavier Le Pichon — The Fragility at the Heart of Humanity
This conversation (from a while ago) was so fascinating and encouraging. Le Pichon is both a geophysicist working on plate tectonics and a practicing Catholic living among people with intellectual disabilities. He contrasts “systems that incorporate fragility and evolve” with those that “reject fragility and become rigid,” like the tectonic plates that cause earthquakes. And he says, “When you put the weakest at the center of the community they become the ones who are going to regulate the life of the community.” Thank you to Andrea Bobotis for this recommendation—it is a lovely conversation about why we need one another and how honoring our common fragility makes us human.
ESSAYS
ATLANTIC ESSAY: “Why Evangelicals Turned Their Back on PEPFAR”
I am still saddened by the Trump administration’s decision to effectively end PEPFAR, the program that saved tens of millions of lives in this century. And after reading Peter Wehner’s account of why evangelical Christians have failed to protest its demise, I’m not only saddened but angered. We don’t want to be the ones who walk to the other side of the road when we see our brothers and sisters in need.
NYT ESSAY: “Autism Rates Have Increased 60-Fold. I Played a Role in That.”
I appreciated this succinct history of the way clinicians diagnose autism spectrum disorder and how these changes have led to the increase in both helpful and false diagnoses.
ESSAY: “Inclusive Worship Shouts, Shushes, and Sings to the Lord”
I hope more and more churches consider what it looks like to create welcoming spaces for all sorts of people. This essay offers some suggestions on how and why we can
“The Work of Caring for My Daughter Will Never Be ‘Efficient’”
I am very grateful to Julie Kim for writing about the importance of the Department of Education—and her concern over the Trump administration’s cuts to that department and the recent Supreme Court decision that allows those cuts to continue. She writes about the significance of a whole network of people who not only care for and teach her daughter Izzy but also care for and teach her how to be Izzy’s mom. She writes that she looks
“For bodies and minds filling school hallways and classrooms; for trained administrators, teachers, aides, and therapists who do the slow, important work of meeting children where they are, while modeling for those students’ parents how to do the same. This is the hard work of building a more accommodating society. It will never be efficient.”
I agree with all of Kim’s points about how important it is to keep the civil rights protections and additional funding for special education. Such protections are a matter of both compassion and justice. But Kim takes it a step further. {Read more of my thoughts here.}
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