Back in 2001, my sister Autumn and I decided to create a documentary film about our younger brother Adam’s life as an offbeat, often hilarious, young man with developmental disabilities living in Iowa. Our goal wasn't to make a film about autism or developmental disabilities, but rather to tell an honest, firsthand story about the real challenges and humor within a family that happens to include a child with a complex mix of disabilities (autism, ADHD and mental retardation).
Flying by the seat of our pants, we started following Adam’s life and digging into his --and our-- history. Adam came to our home as a newborn foster child and it was clear from the start that he had disabilities of some kind, although they were not officially diagnosed. Our family's decision to adopt Adam shortly after his first birthday was largely guided by Autumn's insistence (at the age of 5) that no other family should be allowed to adopt her baby brother. From these early years up through his high school graduation, we began piecing together Adam’s history, uncovering things we were not aware of as siblings growing up alongside our brother.
We had the idea of putting together a one-woman stage play (performed by Autumn), a comedy about Adam’s childhood experiences in our family, and then filming this live show so that we could incorporate key scenes into the documentary. We started making regular trips from Los Angeles to Iowa to capture events that were happening in Adam’s life, while simultaneously developing and eventually producing Autumn’s one woman show. To maintain the integrity and authenticity of family interactions, we decided early on that we wouldn’t operate the cameras – a decision that allowed us to organically be a part of the verite moments at our family get-togethers. We brought on a DP (Paul Mayne) and hired other camera operators along the way who we felt would click with Adam's personality and appreciate his flamboyant but sometimes challenging idiosyncrasies. We always shot with two cameras and kept a mic on Adam at all times to make sure we captured his spontaneous reactions and mannerisms, as well as his off-hand jokes and commentary. We filmed this way off-and-on for six years, and eventually shot interviews to complement the narrative threads of the verite footage as the film started to come together.
Throughout the filming process, I collaborated with a talented editor (Emmy nominee Andrew Ecker) and we began crafting a story that highlighted Adam’s unique charisma and entertaining spirit, while also revealing the very real challenges the family struggled with. We focused on the powerful relationship that grew between Adam and Autumn, and how their bond dramatically impacts both of their adult lives. We also zeroed in on the story of two parents who have been beaten down by a flawed system of care that they resent yet rely upon, raising important issues about how our society treats people with disabilities and their families. Weaving together verite video, interviews with family members, photos, and home movies, we also added filmed scenes from live performances of Autumn's award-winning solo play (shot in both Los Angeles and New York City), bringing to life the stories of Adam's youth and his transition into adulthood.
Our greatest artistic challenge was trying to capture Adam’s side of the story when his particular disabilities prohibited us from interviewing him in a conventional way. Our attempts to interview him always failed because he was (in his words) “preoccupied with other shit.” But, in the end, it seemed entirely appropriate that we could not get inside the mind of Adam even after many years of filming with him.
We began with the germ of an idea and absolutely no money, driven mostly by our passion for our brother's inimitable spirit, and yet we managed to create a 94-minute rough cut. We called the film “GORK!”, which was a somewhat derogatory name that my father (who is a physician) used in reference to the mystery of Adam’s mind and behaviors . We came up with the tagline: “Defying definition. Defining a family” and started to pursue post-production funds. But as it happened, this was right before the Great Recession hit. We were honored to be finalists for a grant from Chicken & Egg Pictures, but as their funding pool dwindled in the aftermath of the economic crisis, our little film didn’t make their final cut. We were finally able to secure finishing funds through a successful crowdfunding campaign (in the early days of Kickstarter) and, six months later, we completed the film.
With an estimated 1 in 68 children in the United States diagnosed with an autism spectrum disorder (and millions more parents, siblings, relatives, educators, caregivers and friends affected by these and related disabilities), “GORK!” opens a very personal window on the real experiences - warts and all - of one family living with and loving a developmentally disabled family member. “GORK!” went on to screen at festivals around the country, winning several awards. It has been acquired by libraries and educational institutions across the U.S. and is currently distributed exclusively on Amazon.
My mother cried after watching the film for the first time – and in fact she has cried every time she has seen it. For years, she didn’t want me to show the film publicly for fear of judgment from other parents or professionals who wouldn’t appreciate her very raw honesty expressed in the film. And my brother Adam, even with his limitations, was moved to tears after seeing the film, in a way that surprised my whole family. I don’t think my sister and I anticipated how deeply the process of making this film would impact us – and how difficult it would be to accept the feelings of all of our family members after seeing themselves on screen. Despite the reactions we received from audiences, who laughed and cried and told us that they had never seen a movie quite like ours, I had some tough work to do to convince myself that the truth of our family’s experience is worth sharing.
I have gone on to produce other documentaries that have enjoyed a lot of success, reaching millions of viewers on premium cable networks and earning me an Emmy nomination. But I think the process of making GORK!” –examining the life of my incredibly unique brother and exploring my family’s history in such a personal way—has proven to be one of the most rewarding experiences of my filmmaking career.
TOTAL RUNTIME: 1 HR 24 MINS
SHOOTING FORMAT: MiniDV (STANDARD DEFINITION, NTSC)
ASPECT RATIO: 1.33 (4x3 VIDEO)
EXHIBITION FORMAT: Color, Stereo (DIGIBETA, DVD, .MOV)