The Story 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 an (almost done!) set of conversation prompts and writing 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. The departmental license allows the purchasing department to distribute their digital version of the book and the workbook to any registered students and teaching faculty in any number for two years.