I was a fulltime photojournalist for 20 years, from 1988-2008. I loved the profession.
But the birth of our son Samuel in 1999 changed our family’s life dramatically. His birth also changed the trajectory of my career, and led me to start LikeRightNow Films.
Samuel has cerebral palsy caused by a genetic disorder called GNAO1 Neurodevelopmental Disorder.
In 2004, Samuel lay in a medically induced coma. He was four years old and had developed pneumonia from complications following a tonsillectomy surgery. As I waited by his bedside, one of his doctors, Dr. James Filiano, encouraged me to photograph the experience, to use my background as a photojournalist to tell the unvarnished story of parenting a child with a disability.
In that hospital room, taking pictures was a way for me to do something other than freak out with fear.
That moment was the catalyst for creating my first film, Including Samuel, which focuses on our efforts to include Samuel in all aspects of life – especially education. My wife Betsy McNamara and I couldn’t imagine him feeling like he truly belonged in our community, alongside his non-disabled brother Isaiah, unless he felt fully welcomed into our own local elementary school.
The film was broadcast nationally on public television in 2008, and has been translated into 17 languages, and continues to be used worldwide to support inclusive education and disability rights. That film was a catalyst for my career change to fulltime filmmaking, and it has led to the production of dozens of additional films, including three more films broadcast nationally on public television: Who Cares About Kelsey? (2013), Mr. Connolly Has ALS (2017) and Intelligent Lives (2018). My experience as Samuel's father also led to my TEDx talk, "Disabling Segregation."
Samuel is now 22, and an aspiring filmmaker in his own right. He and I are co-directing our current project, the Disability Rod Map (working title).
We chose the name LikeRightNow Films because it reflects urgency. Truth be told, the name originated with Samuel’s urgency on car trips, as he would shout from the back seat, “I need to pee LIKE RIGHT NOW!” But now we see the title as a different sort of urgency – the need to make our society more inclusive of people with disabilities.
LIKE RIGHT NOW.