First Look
Thank you for being here!
We are grateful for your interest in and support of this project! We’re excited to share an update on the project and give you a first look at how it’s coming together.
Shooting with Graham and Peter in Canada
One of our subjects, Graham, is a comedian based in New York. His brother, Peter, lives independently in Canada with support from their parents. We went to Canada when Graham was visiting Peter to get to know them both better and get a glimpse into Peter’s current living situation. While Peter is thriving today, Graham can’t help but worry about how things will change and what responsibility he has when their parents can no longer provide additional support.
Peter’s community support worker visited while we were in town. They chatted about how Peter has been a part of the organization for years and what impact it makes in his life.
Peter was eager to make sure Graham had a clear idea of the birthday gifts he wants this year! Here they are researching the exact model.
Graham and Peter went to dinner at their parents’ house and we tagged along. They discussed Peter’s vision for his future.
Peter gave us a tour of his apartment and showed off his extensive and meticulously managed collection of superhero figurines.
Shooting with Kirk and JJ in Sweden
Kirk, a comedian based in New York, is another one of our subjects. His adult son, JJ, lives in Sweden in a supported living community. We went along with Kirk during one of his visits to Sweden to spend time with him and JJ and understand how the long-term care system works in another country.
Kirk carries a lot of guilt that he’s so far away from JJ, but takes comfort in knowing that he is safe and cared for where he lives.
Kirk bought a car for JJ so his caregivers can easily take him on outings. It was time for a wash.
Kirk likes to get JJ out for fresh air when he visits. They enjoy taking in the beautiful scenery and wildlife.
JJ is nonspeaking, and Kirk constantly wonders how JJ thinks about his own life and his future.
Interviews with Subject Matter Experts
We sat down with two experts to better understand the current landscape of long-term care for individuals with disabilities and to trace how today’s policies evolved. Through their perspectives as experts, advocates and parents, they helped unpack how historical deinstitutionalization efforts, shifting models of disability, and modern policy decisions have shaped the situation families face today.
Dr. Amy S.F. Lutz is an author and Senior Lecturer at the University of Pennsylvania, where her work focuses on disability history and bioethics. We discussed the growing crisis facing families of individuals who require lifelong care, and the policy tensions between inclusion and appropriate support. She communicated the urgent need for a full continuum of residential options that prioritize safety, meaningful community, and individualized care.
Jackie Kancir, Executive Director of the National Council on Severe Autism, described the daily realities families face when caring for individuals with complex medical, behavioral, and cognitive needs. Jackie shared how many adults with profound disabilities remain at home because appropriate placements simply do not exist, and how current policies have restricted higher-support options in favor of smaller settings that often lack the capacity to provide comprehensive care. She emphasized that when families are not included in policy conversations, the individuals who cannot advocate for themselves are effectively silenced.
Behind the Scenes
The weather didn’t exactly cooperate in Canada, but we made it work.
Catching Graham in the green room before his show.
Graham getting ready to headline a show in Montreal.
Grabbing a quick skateboard break.
The sun doesn’t set until about 10:30pm in Sweden this time of summer. It’s quite disorienting and we accidentally worked way too late!
Kirk’s parents and daughter visited JJ while we were there, and we captured some great family moments.
Kirk wanted to swing but JJ wasn’t on board.
It takes a surprising amount of stuff to create a simple interview backdrop!
Everything comes together at the last minute before we start shooting.
