Photos by Bryan Johnson
How Love Disrupts the Hierarchy
You may have noticed that I didn’t write a Substack last week. I took the week off because I was at Hope Heals Camp in Nauvoo, Alabama, with our family.…
Life, Animated
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 Over the course of the previous year, Owen had stopped talking and seemed more and more withdrawn from…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 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…
2013
Our daughter has Down syndrome. Can she live a full life?
Here's what I know... Penny has different capacities when it comes to learning, but she has no limits on her capacity to love, or to live a full life. Our…
Assumptions Without Curiosity
We just returned from two weeks in Italy as a family. It held all the things we had hoped for. We peeked into churches with some of my favorite Caravaggio…
The Big, Beautiful Bill?
As we return from vacation and I get back up to speed on the news, I’m trying to wrap my head around the implications of the “Big, Beautiful Bill” that…
Kids, Disability, and Relationships
Here’s what I wish parents of typically developing kids knew about disability and relationships: Disability isn’t a completely different experience. It’s often a magnified version of the human experience we all…
True Friendship Isn’t Built on Pity
Years ago, one of our kids came home from preschool and said, “She cries a lot and doesn’t share her toys.” Our child were talking about a classmate who had…
“You are a human. You belong here.”
I’ve been thinking a lot about belonging—what it feels like, where we find it, and how we create spaces that nurture it, spaces that say, "You are a human. You…
Photo Credit: © Camilynne Photography
S8 E20 | The Lucky Few: Finding Delight and Belonging in Disability with Heather Avis
Apple YouTube Spotify More! When Heather Avis says she’s one of “the lucky few,” she means it. In this episode, we talk about growing up with our children with Down…
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