Resources

Children’s books I recommend:

• You Are Special by Max Lucado — I STILL keep this book close by. Lucado skillfully teaches kids (and adults, let’s be honest) to look beyond what a person can do. He shows the harm and hurt in judging one another based off of appearance or talents. He ends the book by teaching his readers to seek the One rather than the many to teach us about our value and worth.
• Just Ask by Sonia Sotomayor — When I found this book, I cheered VERY loudly in the middle of Barnes and Noble. Sotomayor’s book introduces kids to a variety of conditions (diseases/disabilities) and helps kids understand some of the symptoms that occur with these conditions. I love that she not only encourages her readers to ask kind questions, but she also emphasizes that we’re all different and have different needs. With that said, there are some disability advocates that do not recommend this book because they do not like the premise of the book. I understand both sides of the debate; however, I think the book can be at least helpful for teaching kids that some of their friends, classmates, etc. may face different health-related challenges. I would advise parents to teach their kids to ask kind questions in the context of close friendships and relationships where there is space for the mutual exchange of personal information.
• We’re Different, We’re the Same by Bobbi Kates — When I respond to questions about my syndrome, my answers usually come from what I learned from this book. This Sesame Street book beautifully shows that we’re all different, but we’re all the same. (Yes, I just restated the title, but it’s SO worth restating!) The words and illustrations in this book help kids see that every person is a little bit different — and that’s okay!
• Shubert’s New Friend by Becky Bailey — My younger sister, a phenomenal Kindergarten teacher, read this book to her class to teach them about empathy, acceptance, and inclusion. This book teaches kids to embrace diversity instead of teasing those who may look a little different.
• Also check out out http://theablefables.com. Dr. Nicole Julia has penned two excellent children’s picture books that aim to decrease the stigma around differences and disabilities, helping promote inclusion. She donates money from book sales to build/support inclusive playgrounds.

Books for adults:

• Hope Heals by Katherine and Jay Wolf — My childhood pediatrician sent me this book, and I’m so glad he did. The Wolf fam beautifully writes about the stroke that nearly killed Katherine when she was 26. What I love about this book is that it illustrates the tension between heartache and hope. As both Katherine and Jay navigate this tension in their book, they help their readers #HopeWhileYouCope, as Katherine often writes on Instagram.
• Suffer Strong by Katherine and Jay Wolf — I haven’t read this book yet, but I’m so excited about it! In this book, they discuss lessons they’ve learned about redefining how they think about suffering. While still bravely writing about their struggles, they emphasize the strength they’ve found as they seek to thrive in circumstances they never anticipated.
• Embodied Hope: A Theological Meditation on Pain and Suffering by Kelly M. Kapic — I read this book for a theology class, and then I read it again and again and again. As a member of the Lifelong Sufferers Club, I have a great appreciation for Kapic’s emphasis on acknowledging pain and responding by lamenting. He helps his readers navigate how to faithfully live in the midst of suffering and care for those who suffer long term.
• Everything Happens for a Reason: And Other Lies I’ve Loved by Kate Bowler — Bowler doesn’t know this, but I’m pretty sure we’re meant to be besties. In this memoir, Bowler hilariously and honestly tells pieces of her story about being diagnosed with cancer and responding to such a grim diagnosis. I love Bowler’s honesty, and I often find myself relating to how she responds to suffering. Also, at the very end of the book, Bowler provides a list of things not to say and a list of things to say/do when someone is suffering. Her lists are GOLD. (Warning: Bowler’s book contains a little expletive language, but again, she’s honest.)
• By Faith, Not by Sight by Scott MacIntyre — In this former American Idol contestant’s story, you’ll find a young man with incredible talent chasing big dreams, a cure for an illness that rocked his world, and a young woman he loved. Like the Wolf fam, MacIntyre navigates the tension between heartache and hope. His book gives readers a behind-the-scenes look at what many of us endure: unanticipated health complications that are tough to diagnose and treat.
• Crippled Grace: Disability, Virtue Ethics, and the Good Life by Shane Clifton — This scholarly book by Clifton intertwines philosophy, psychology, disability studies, and Christian theology (…these are a few of my favorite things!). Clifton is a quadriplegic biblical scholar who focuses on what it takes to flourish. He explains that all bodies are fragile and impaired. To Clifton, disability is a symbol for the human condition. Therefore, this book challenges the stereotype that those with perceived disabilities cannot flourish or live “the good life.” If you want to be challenged and encouraged, I suggest reading Clifton’s work on flourishing in the midst of human fragility.
• Becoming Friends of Time: Disability, Timefullness, and Gentle Discipleship by John Swinton — Swinton’s book wrestles with questions that emerge from reflecting theologically on disability and time. Swinton challenges his readers to rethink how we often perceive time, discipleship, and care for those with neurological damage.

Podcasts I recommend:

• Once Upon a Gene, hosted by Effie Parks. Effie is an A+ storyteller and advocate for the disease and disability community.
• Two Disable Dudes, hosted by Kyle and Sean. They’re fun and pretty encouraging to listen to!
• Go Shout Love, a podcast by the organization of the same name, which beautifully tells and supports patients’ stories.
• Rare Cast, a podcast by Global Genes. This podcast includes episodes on science/research and episodes that focus on patients and their stories.
• The Rare Disorder Podcast, hosted by Shivani Vyas. I had the opportunity to chat with Shivani on her podcast, and I’m really excited about what she’s aiming to do with her series ‘Meet a Fighter’ and ‘Meet an Expert.’
• R is for Rare, hosted by Annie Watson. Talking with Annie is a BLAST. Her episodes tend to discuss the everyday life of those living with rare disorders.

*Also check out The Disorder Channel if you have access to Roku or Amazon Fire TV.

Do you have a book on disability/diversity you’d like to recommend? Send me a message on the “Just Ask” page!