Miggy's Guide to Navigating The Disability World
photo credit: Momoko Fritz Photography.
Not long ago, I received an email from a publicist asking me to review a children's book and post it on my blog. I generally delete these requests as quickly as I receive them because my blog is not "consumer-oriented" -- I long ago decided that I didn't want to use the space for any commercial reasons. I scanned the email, though, and saw right away that it was a book that I'd very much be interested in reading and perhaps even promoting because of its subject matter.
When Charley Met Emma, written by Amy Webb and illustrated by Merrilee Liddiard, is a children's book about a boy named Charlie who goes to a playground with his mother and has an encounter with a girl in a wheelchair -- a girl named Emma with limb differences. It's a beautiful book -- so beautiful that I asked the publicist whether Amy might want to be on the podcast and tell our audience (you!) about her family, her life as a caregiver and artist and advocate for children with disabilities. Amy graciously agreed and here we are with a wonderful and wide-ranging discussion about Amy's family, her changing perceptions on disability and her life as a creative woman balancing her art and writing with family.
Amy and her husband have been married for fourteen years and have three young daughters who are referred to, online, as Big Sister, Lamp and Zuzu. Their middle daughter was born with a condition called microgastria and limb reduction complex, or more simply, "limb differences." Amy, aka Miggy, is perhaps best known as the creator of "This Little Miggy Stayed Home," a family + lifestyle blog that shares crafts, recipes, and lifestyle inspiration from the unique yet relatable perspective of a special needs family.
A writer and artist, Amy is also a passionate advocate for disability rights and writes about the issues her family frequently faces. She interviews other special needs' families and individuals with the hope of changing the perception of disability one story at a time. I found myself lost in her blog, particularly in the "About" pages that detail the family's journey from learning about their daughter's congenital issues during a routine ultrasound to the beautiful and often deeply humorous way they've coped with others' behaviors and stubborn beliefs.
In today's podcast, Jason and I delved into that journey and learned that Amy's life as an artist is what sustains her, what gets her out of bed in the morning and persists despite the challenges and joys of parenting in general. Amy agreed that one of the biggest transitions she faced as a parent was the "idea of time being chopped up all the time, being interrupted at any moment and not ever feeling like you have a chunk of time to do anything." As a painter, Amy says that inspiration ebbs and flows. She and her husband decided early on that they would support her art by doing what they called an "Artathon," where he would take the kids for twenty-four hours and during that time, Amy would challenge herself on what she was going to do, what themes she would explore and then just go for it. "It's not like I stayed up for 24 hours straight," Amy explained. "I usually start in the afternoon. So I'd go from that rest of the evening, as late as I wanted -- wake up in the morning and start again till the 24 hour mark was up." Amy confirmed that it was a great way for her to create, to "get something out of me just when I began to feel really fidgety."
Amy shared the genesis of her children's book When Charley Met Emma, a creation that grew out of a blog post that she's written for years called Miggy's Guide to Navigating a Special Needs Encounter. She would share the post during back-to-school time, hoping that it would teach people how to respond to children like her own daughter who "presents very differently and never flies under the radar." Amy spent many years navigating these interactions with kids who had clearly never met anyone like her and never seen anyone like her, along with parents who didn't know what to do. The blog post helped people know how to navigate this, was shared widely, and people loved it, so Amy decided that it might be shared even more widely as a children's book.
We've come full circle here, I think, with the initial random request to promote a children's book turning into a stimulating discussion with a dynamic artist and disability advocate. The book is extraordinarily beautiful in spirit and design, a must-have in any children's library and a testament not only to the inherent dignity and beauty of all people, no matter their differences, but also to the life of a caregiver who persists in creating art.
We know you will enjoy the show!
Favorite Purchase < $100
Guzzie and Gus Cup Holder for the wheelchair or stroller
Far From the Tree by Andrew Solomon
No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro
If At Birth You Don't Succeed: My Adventures with Disaster and Destiny by Zach Anner
Most Inspirational Group or Person
Rebekah Taussig -- She has an Instagram @sitting_pretty that is "Mini memoirs and photographs narrating life from my ordinary, resilient disabled body."