An interactive storytelling project explores memory and the meaning of family.
In 2009, Banker White’s mother was diagnosed with early-onset Alzheimer’s disease. The filmmaker moved home with his family to take care of her. Over the course of the next four years, they recorded the conversations, the big events, the little things: their changing reality and the shifting landscape of memory.
The Genius of Marian debuted in 2013 of Tribeca. For the filmmaker, it was only the beginning of a journey to better understand the illness, and to provide a network of support for those affected. The Genius of Caring is an interactive documentary project that shines a light on those living with Alzheimer’s. It offers an intimate look at the caregiving experience; a community connected by compassion. You can support The Genius of Caring on Kickstarter. And you can go inside the project here, on BitTorrent Bundle.
More than memory: words with Banker White.
BitTorrent: Where did the idea for this project begin?
Banker White: This project started off as a very personal project between me and my mother. In 2008, about a year before my mother’s diagnosis, she announced to the family that she was going to write a book about her mother, the artist, Marian Williams Steele – it’s titled The Genius of Marian. I was incredibly close with Marian, the only grandchild who was a practicing artist. Naturally I started helping my Mom. In the beginning I acted as kind of the family archivist, organizing her paintings, scanning images, and digitizing old film reels of Marian’s.
When she was officially diagnosed in 2009, I moved back to the Boston area full time to help out, and working on this project with my mother became a daily activity. Marian had also passed of Alzheimer’s in 2001 so this project also gave us an ability to talk about Alzheimer’s and how it affects families at a time when my Mom was not yet comfortable talking openly about her own diagnosis. After about a year of talking regularly in front of the camera, my Mom opened up about her own experience with the disease and what it felt like. I think she had incredible presence on camera and what she was saying was powerful. I proposed the idea that this project could be a documentary and she liked the idea. She was a gifted social worker in her professional life, and I think this felt like an important continuation of that work. As we started to share the film people reached out to us sharing their own both heartbreaking and beautiful stories. The Genius of Caring is our response to this, and feels like a very natural and necessary extension for the film.
BitTorrent: The Genius of Caring takes a non-traditional approach to exploring the caregiver role within the the community of those affected by Alzheimer’s, and beyond it. What informed this approach?
White: The Genius of Caring is an interactive documentary that presents portraits of caregivers and invites the audience to contribute stories and pictures to a community archive. One of the things that I found most profound in watching the progress of the disease on our family is how isolating it can be. Isolating at a time when you need the most support. Many people did not know how to react to my mother’s diagnosis: it was like they lost at least half of their friends when ‘word got out’. People just did not know what to do. And because my Mom was so traumatized by the stigma surrounding the disease, we did not ask for help or really communicate well at all with our network of friends. Eventually many of these people did come back into their life and still today are a big part of how we are supported. Some of that support is as simple as still including them in their life, coming by to have lunch with my mother and giving my father a couple hours off. I think one of the reasons for the change is that we became more vocal – actually moved from a place of secrecy to public advocacy. And by sharing so publicly people maybe understood what we were going through better and reached back out. The site provides a space for people to share, but hopefully also for people to learn, so our understanding as families, as communities, and as a country of what this experience is like becomes much deeper.
BitTorrent: The project is anchored by documentary portraits; film, photos, and submitted text fragments. Is preservation part of the story you’re trying to tell?
White: What I think is most terrifying to us about dementia is that it robs you of your memories and your identity. I have talked to so many people, in the early stages of the disease especially, who start family archiving projects or scrapbooking, or they begin a book much like my mother did. There is a real desire to hold on and preserve. As time goes on this becomes more important to the caregiving team and the family than it does to the person experiencing dementia. Remembering is such an important part of the grieving process, and in time these memories are no longer about just grieving. They become how we keep people alive and how we maintain a relationship with those who we have lost.
BitTorrent: The project extends the story started in The Genius of Marian. It makes us all part of it. Was that the goal? In what ways do you hope to see the conversation around disease and community change?
White: The goal was absolutely to create a project that moved from an intimate look at our families experience to one that could tell a story about the millions of other families touched by Alzheimer’s disease and who tirelessly give of themselves as caregivers. We also know that everyone’s experience of dementia and being a caregiver is unique and we are choosing stories in an attempt to reflect the diversity of experience in what it means to be a caregiver. We also wanted to share them on a platform that made people feel safe sharing their experiences, and facilitated making connections and building community with others going through the same thing.
BitTorrent: How can we help?
We are really trying to build a community with this project, so sharing the campaign with anyone who you think would find value in it would be amazing.
A beta version of the site is also now live and you can share stories and join the community now. If you know a caregiver who you think would be open to sharing their experiences please have them reach out to us directly at email@example.com
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