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The Backstory of Dads of Disability

Why me? My son has a rare genetic disorder. When he was 12, after exhausting many other options, he entered a residential school. At that point, my depression and guilt could have gone in many bad directions. Instead, I chose to research the need and develop a book of essays by and about fathers to help professionals, parents, and caregivers build empathy and see the worldview of our special band of fathers.

How it came about? I made about 100 phone calls to genetic counselors, and found out that almost without fail, they wanted additional resources for them and their clients to help fathers and those that support them. So I spent the next 18 months in an odyssey of crowdfunding, emails, phone calls, book layout, working marketing contracts to pay the mortgage, and at the same time managing my son’s placement and caring for him.

Success! The book was published. I ended up being the subject of many podcasts, articles, and even coordinated and ran a speaking tour which led me, among other places, to speak to Masters in Genetic Counseling Students at Tufts, Brandeis, Johns Hopkins/NIH (where a White House representative attended and had tea with me after!) and lead a fathers storytelling group for the Williams Syndrome Association. I was also privileged to be asked to write many guest blogs for amazing organizations, including an Easter Seals home page essay.

Who it’s helped. The book has been useful for genetic counselors, social workers, special education teachers, physicians, psychologists, and parents and caregivers. It’s about empathy. The book has even saved a life (I am not ready to tell that story yet, but it’s true!).

Now, a few years later… Now, I have built a set of writing and conversation prompts workbook for the book, and have packaged it with a digital copy of the book as a departmental license for college and university programs. As of January 2025, the project book and workbook are “pay what you like!”

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Testimonials

Columbia University

“As the director of the Columbia University Genetic Counseling Graduate Program I recognize the importance of providing our students with real world examples of the challenges of integrating fathers into the circle of care. The “Dads of Disability” department license provides an inexpensive way to share these lived experiences with my students which both raises their awareness about this important component of providing clinical care and allows them to consider how they want to engage their future clients to best promote a therapeutic working alliance with all clients.

The associated conversation prompt workbook is a helpful adjunct, supporting faculty in creating challenging and useful class discussions and individual writing prompts that deepen students’ understanding of the material and allow for self-reflection. I would recommend the department license and workbook to colleagues educating future practitioners in various fields, including genetic counseling, special education, and social work.”
– Amanda Bergner Director, Columbia University Genetic Counseling Graduate Program

Brandeis University

“One of the pillars of the Brandeis University Genetic Counseling Program is the theme “Everybody Has a Story.”  Learning from families who live with a disability or genetic condition allows our students to gain insight into what the patients they will see in clinic may be experiencing during their own journeys. Hearing from Dads, who are often overlooked, adds an important perspective that enriches their learning. 

Gary Dietz has come to speak to our students at Brandeis a number of times, most recently as part of our Personal Narratives Series in January, 2021. Our students took Gary’s message, “don’t forget the Dads” to heart, with two now considering doing their thesis projects on the perspectives of fathers. Having the “Dads of Disability” department license and accompanying workbook with question prompts will allow our program to make sure Gary’s words will continue to be heard loud and clear by future generations of genetic counselors. We are grateful to have this as an educational tool for out students.“
– Gretchen H. Schneider, M.S. LCGC, Professor of the Practice, Director, Master’s Program in Genetic Counseling, Brandeis University

“…Our program places a strong emphasis on learning from a wide variety of personal narratives, particularly with parents of a child with a genetic condition and/or disability. His presentation broadens our understanding and challenges our thinking, revealing the biases we often hold towards fathers.“
– Gayun Chan-Smutko, MS, LCGC

Amazon Reviews of the Book

“I enjoyed the stories of fathers who looked back and saw so much joy and love from their children with disabilities and I loved the quite honest and sometimes hilarious, sometimes heart wrenching stories.“
– Spring McDonald (from Amazon review)

“Being able to read short accounts of various perspectives is a great way to help another person feel like they aren’t on their own in this journey through life.“
– Joanna Keating-Velasco (from Amazon review)