The title of the book Gary Dietz has tirelessly been working on is called Dads of Disability, but on the cover, the “dis” has been bolded in blue; this distinction, Dietz said, is meant to highlight what the book is really about.
“This book is not about the children. This book is about the fathers,” Dietz said in a phone interview. “It’s meant to read Dads of Ability.”
The Brookline dad has been spending the better part of two years working on the collection of stories for, by and about fathers of children who experience disability. It’s been out for about two months, and just in time for Father’s Day, the book has begun to generate what Dietz hoped it would when he began the endeavor in 2012: conversation.
He’s been talking about the project at local press events, in radio interviews and with other dads — and moms — like him who felt there was a void in literature on this topic.
“There are many great books about men who have children with disabilities, but they’re usually first person, single diagnoses cases. Those are great books. I love those books,” Dietz said.
Those books guided him through the sometimes rough road that comes with being a parent of children with genetic disabilities. His now-14-year-old son Alexander was diagnosed with interstitial deletion of the lower arm of chromosome 13 as a baby. The rare condition means that genetic material is missing between chromosomes.
But in 2012, his son went into a residential placement facility. All of a sudden, after 12 years of cacophony, his house was empty and quiet. The change was hard, and he had time to fill.
Sinking into a depression was out of the question; he’d had enough of that after a bought when his son was first diagnosed. He wanted to create something that would help other dads experiencing the same struggles as he, something more conclusive than the first-person memoirs.
His idea was a Chicken Soup for the Soul kind of book, comprised of essays about dads whose children experience disabilities. There was a definite void of something to that magnitude in the market, he said; more often than not, books are aimed not at fathers, but at parents in general or mothers specifically.
So in 2012, he began to research.
“I wanted to know if a book like this would be worth the effort of doing — not financially, but I wanted to know if it would be useful for people,” Dietz said. “I emailed 100 genetic counselors. … I got a 30 percent response rate within 24 hours. If you’re in marketing or sales, that’s just unheard of.”
Dietz is in marketing; he worked for many years in educational technology and performed quite a bit of academic-style writing. But when he ultimately decided to devote himself to the idea, he left his job and threw himself into the project full time.
He started with a Kickstarter campaign, which failed; he raised $10,000, but his goal was $15,000. So he went to Indiegogo, where he raised almost half of what he needed.
“One mistake that most people make while thinking about crowdfunding is that it’s all about the money. But it wasn’t; I gathered a lot of authors from the publicity surrounding the crowdfunding,” Dietz said.
Some of the essayists featured in Dads of Disability had written stories that were already finished. Dietz helped others with their submissions. The stories spoke of joy, fear, anger, transformation, faith and transition.
“There were ... people who told me their stories over the phone. With their permission, we worked together on building the story through telephone recordings,” Dietz said. “I think we got quality stories that way, because I’m a dad, and we understood each other immediately.”
It was a lot of work. Dietz did everything in the book’s publishing, from the gathering, editing and transcribing to the layout, cover and press tour designing.
“I think my naivety about how long a book should take helped me get it done quickly,” Dietz said. “When I needed to get something done, I just did it.”
For Dietz, just hearing these stories helped him heal. It helped him move on, too; this interview happened over the phone while he was in San Diego on his first commercial business trip in two years.
“I knew at the beginning, I was also doing this project for me,” Dietz said.
As seen in the June 12, 2014 issue of the Hippo.