Dementia
When my Mom was diagnosed with vascular dementia in 2012, I felt a great amount of instability and struggle enter our lives. At the time my work was focused on my film, Control. Control explores ways systems of incarceration metastasize and erupt into people’s personal, everyday, spaces. My projects around policing and incarceration examined the mechanics of dehumanization and marginalization. I was shocked to find the themes, institutions, and dysfunctions that are present in systems of mass incarceration also tearing apart the dementia community. People living with dementia are systematically dehumanized, alienated from their communities and public spaces, denied critical resources, and quickly become subject to hyper-institutionalization. People living with dementia have a right to their voice, expression, body, and autonomy.
Chris with his Mom, Joyce, and nephew, Sayer.
As I engaged more with people living with dementia, I became very interested in how people living with dementia, and the communities built around these diseases, experience forms of social violence and repression much in the same way incarcerated and policed communities do. I also remembered that our modern systems of mass incarceration were first formulated as an attempt to criminalize mental illness. People living with dementia struggle to lay claim to their basic rights to humanity and personhood. I began to develop projects to better find the voice of people living with dementia, and to help build platforms to facilitate engagement with this hyper-marginalized community.
Sum of My Parts (film)
Sum of My Parts documents the ways that dementia has shifted the terrain of my relationship with my mother. Over the course of about a year, I recorded my conversations with my mother. She is a very communicative person and has always been interested in expressing her ideas and feelings with me. I feel that in these recordings is a powerful statement about the experience of dementia. I think that she is trying to describe what it feels like to lose parts of yourself, and to witness that loss. I think she is trying to describe a kind of disorientation that is hard for us without dementia to imagine. I think finding ways to better hear this story is an imperative first step towards healing the divisions which further isolate people with dementia in our culture.
watch: Sum of My Parts
Make Space (creative engagement)
Make Space is a movement based creative engagement project for people living with dementia. Make Space is an open framework that uses dance, movement and narrative building to develop and enhance modes of expression and communication. Make Space builds tools that allow people living with dementia more effective and robust connections to the people and spaces around them.
Most basically, Make Space is a program that makes connections between movement and meaning. Many people living with dementia describe experiencing an increased sensitivity to emotional language and non-linguistic forms of communication. The Make Space framework is designed to support and enhance this developmental direction, and help people living with dementia explore options for expression beyond the dominant language-centric models. The program helps people gain comfort and security in the broad range of resources available to them in their bodies, minds, and voices. People living with dementia inevitably experience shifts in their modes and capacities for expression. Make Space provides tools that can help participants maintain meaningful engagement, community and connection regardless of their disease progression.