How do we live, transform and grow with loss in our lives?
Christine Jonas-Simpson studies the experience of transforming and growing with loss. Her arts-based research focuses on dementia and bereavement, and seeks to bring these experiences out of the shadows by focusing on the possibilities for growth and change, for persons, families and for health professionals. Jonas-Simpson’s growing list of credits includes a children’s book, music, dramas and films.
They say you teach what you need to learn… and maybe you research what you need to understand. I find different experiences of loss fascinating in terms of how we grow as human beings. It’s also a personal endeavour. After the death of my own baby, I was determined that I would grow through that experience and reach out to help others. With the research-based documentaries and dramas I create with my colleagues, we try to make the invisible, visible. We try to break down the perception that loss can only be sad, and focus on possibilities, transformation and growth.
I’m researching lived experiences that are universal. We all live with loss and death at some point in our lives. At that level, people can usually connect in some way to my work even in different contexts. For example, my film, Nurses Grieve Too, supports nurses who grieve when a baby dies; it is also used with nurses and other healthcare professionals in different settings beyond labour and birth given the universal nature of grieving.
I see the power of arts-based research. When a woman with dementia says to me after seeing our play, “I will no longer hide,” or when people tell me they feel their experience of loss is acknowledged after seeing my films, that’s what I want my research to do: to touch people so they feel less isolated and to bring about understanding and new possibilities for entire communities.
Research-based art has the power to shift how people with dementia and the bereaved are viewed and understood. I hope that my research opens up spaces for conversations that inspire new relationships and life-changing possibilities.
My colleagues and I created a research-based drama called “Cracked: New Light on Dementia.” We are evaluating the influence of the play on people who see it, and are hoping to change the tragedy discourse of dementia. The way people view dementia tends to only be negative. Of course there are challenges, but we are trying to shift the conversation to look at possibilities, growth, and transformation. During the development of our play I held a focus group with seven people living with dementia about what they wanted the world to know about them. They told us about living their “bucket lists,” being valued members of society, making a difference, and having fun. You don’t normally hear these kinds of stories about dementia. We performed this play in Stratford at the SpringWorks Festival, and one of our audiences included close to a hundred high school students. We want to shift society’s views about aging and about dementia – where better to begin than with youth?
We are piloting research on intergenerational learning where high school students will meet with people living with dementia and together create an artistic expression of the person’s life. We are hoping to encourage new understanding in the youth, but also for older persons about young people. We are also planning an intergenerational symphony project for persons with mild to moderate dementia, their families, and staff along with young musicians who perform with youth orchestras.
Another exciting new research project will explore teen grief when a sibling or friend dies during high school. This project is in collaboration with Carleton University and Bereaved Families of Ontario. We plan to create short videos for YouTube and social media so that teens can speak directly to teens about their experiences of grieving.