'Isn't it enough for art to be joyful?'

By Louise Kinross

Julia Gray describes her work as a post-doctoral fellow at Holland Bloorview as “the humanities reaching into rehab.” Julia trained as an artist, playwright and theatre director and did her PhD in education at the Ontario Institute for Studies in Education (OISE) at the University of Toronto. Before coming here she worked with Ontario rehab researchers to write and direct a play called Cracked—about how we stigmatize people with dementia. “The researchers were interested in what they termed ‘the discourse of tragedy’ around dementia,” Julia says. We talked about how a similar devaluation happens to people in the wider world of disability.

BLOOM: How do you describe your research?

Julia Gray: I’m interested in thinking about what it means to be disabled and/or able-bodied, and how art-making comes into that conversation. For example, I’m working on a study about the therapeutic clowns.

BLOOM: I loved the research here that showed that children who can’t communicate conventionally respond at a physiological level to the clowns.

Julia Gray: Yes, research here and elsewhere shows tangible outcomes, but I’m interested in the art part. What techniques are the clowns using, and how does what they’re doing as artists link with those outcomes? What do kids with disabilities appreciate or value in that art part? This will be a pilot study where we observe 30 kids playing with the clowns, then debrief with the clowns on exactly what they were doing with the kids. We’re also hoping to interview three to five kids to ask them what is special about the clowns, and what helps them?

BLOOM: Why is there a need for this research?

Julia Gray: My research focuses on the humanistic side of disability and the humanistic side of care. As a critical researcher, I try to flip over assumptions that we have. For example, we often think art has therapeutic value—that it can help cure or fix something. And my thought is: ‘Really? Does it?’ Do we have to assume that it always has only medical outcomes? Can’t it just be part of being in the world? Isn’t it enough for art to be joyful? As humans, we create things and that includes art sometimes, and kids with disabilities do it, too.

Medical outcomes are like an awesome bonus. If a child’s anxiety or depression is reduced, or their functional movement is improved—awesome. But what about all of the other stuff we’re missing, like joy, expressing sadness, producing something, or playing?

BLOOM: It does seem like a lot of our outcome measures are related to function, not happiness.

Julia Gray: That’s rehab’s roots, and it makes sense that that’s the frame and the assumptions people bring to the work. We need to think beyond it. This is where my supervisor Barbara Gibson’s work is really critical in asking what the purpose of rehab is philosophically. How do we help people live their best life? What are the assumptions that we’re bringing about what we think a better life is? What are we valuing?

BLOOM: What do you love about working here?

Julia Gray: I really love working with my supervisor. Barb is genuinely interested in helping me learn things and build my skills. She has a wonderful balance between being genuinely kind and critiquing, challenging and pushing me in the most supportive way.

I also love the way Holland Bloorview is genuinely interested in improving the lives of kids with disabilities. Many clinical settings are not like that. Here, people are receptive to different ways of working and doing things. As an arts person, I feel people are genuinely curious about what I bring, in conversation with science.I’m humanities reaching into rehab.

BLOOM: What is most challenging?

Julia Gray: That cross-paradigmatic conversation!

BLOOM: Do you feel like you’re talking different languages?

Julia Gray: Completely. The ways things are measured, or your outputs as a researcher, are done in a different way. There are outputs that aren’t on the radar of scientific research—like artistic creation, which is a kind of exploration. We’re in the process of having a discussion about how do we value that in a scientific research institute? And what is it that is valued?

For example, a lot of humanities- and arts-related work will be published in journals that have a low impact factor. The impact is in concepts and ideas and criticizing cultural norms and assumptions, not objective research or technology. Of course, all of these things can impact services or how care is provided, but the impact is different. To try to assess humanities with a scientific impact factor is challenging. Barb and I, and lots of other qualitative and arts researchers, are working to find ways to value, frame and talk about qualitative work. But we want to have that conversation without trying to fit it into dominant forms or frames.

BLOOM: What did you do your PhD in and why?

Julia Gray: I did my PhD in education at OISE. In my practical work with health researchers, I felt I wanted the education degree to allow me to learn more about social sciences and qualitative research, since my background is as an artist.

BLOOM: Did you have experience with disability before coming here?

Julia Gray: Before coming here my research was in dementia, which is cognitive memory loss. As a teenager, I worked at a summer camp with kids with disabilities. I was a special-needs counsellor who worked to integrate kids with special needs into the program. The emphasis was on helping kids be kids.

BLOOM: How did your play Cracked come to be?

Julia Gray: I had worked on a previous play called After The Crash about brain injury, and one of the investigators told me there was a group of her colleagues interested in doing a play about dementia.

BLOOM: What did they hope to achieve with a play about dementia?

Julia Gray: They were interested in what they termed the ‘discourse of tragedy’ around dementia: That we value cognition so much that if you lose that, you’re devalued as a human being, and you could only be in the world in a negative, sad way.

They wanted to look at how assumptions about dementia being tragic affect how people are cared for, and the way long-term homes are built and run. They didn’t want to address policy alone, or only the way health care providers are trained, but to look underneath at cultural beliefs around stigma. Why do we have to assume that dementia is sad? It’s not to say it’s not difficult, but is it only sad? Why can't it also be about just being in the world, being in nature and enjoying the sunshine on your face?

BLOOM: What is the play about?

Julia Gray: It follows two characters who have dementia. With one character we see how her relationship with her children changes, and with the other we see how her relationship with her partner changes. We see both characters move from the initial diagnosis through to their life in long-term care.

Part of what we see is the way these characters thrive in their lives. We see them join a political activist group and work with their MP to develop a national dementia strategy. We see one move into long-term care and make new friends. So the care home isn’t just this dour, cavern of death. It’s vibrant, and the character grows and learns, which is not what we expect to see.

We see that the things that are causing this character to shrink are not related to her disease, but to the assumptions people bring, and the way people stigmatize her. Every single scene in the play, except for one, is based on stories we’ve heard from people living with dementia and their families and clinicians.

BLOOM: Where was the play seen?

Julia Gray: We’ve toured it to many conferences, long-term care homes and community settings. Several performances were for the general public. It was also filmed and is available on DVD.

BLOOM: So you were trying to tackle stigma on a broad scale?

Julia Gray: We wanted to look at the broad, underlying assumptions we have about memory loss, and how they manifest in the ways we stigmatize people with dementia. We wanted to show that life could be different, that full lives are possible.

BLOOM: Is this a model we could use here at Holland Bloorview?

Julia Gray: It is a model we could use with disability stigma. Social justice and reducing stigma are right in our strategic plan, and the arts are fundamental to addressing assumptions that we don’t even know we have. We assume that something is a normal way of seeing the world—but why? And how is this thought or assumption possibly harming people? Art can provide that kind of insight, in a way that being lectured to about 'not stigmatizing' can’t.

BLOOM: What did you learn from your work on Cracked?

Julia Gray: It’s very easy to get caught up in what it means to live a good life and to be successful. I’m always challenging myself to be aware of my own assumptions about what that means, and to reflect on assumptions that I bring to my work. It’s a constant. You never know enough. I learned that any social justice or anti-stigma work is about relationships—it’s not about you. It’s about listening and acting and doing things in ways that are as supportive as possible for everybody.

BLOOM: Did doing the play change how you feel about diagnosed with dementia yourself?

Julia Gray: Hugely. I thought a lot about it. The thing that scares me the most isn’t having dementia, but the way people will treat me, and going into care. I know I can live a good life. It’s whether other people will make assumptions about me, and treat me poorly when I’m completely reliant on them.