This is What the World Looks Like When You're Gone

Steen (Christina) Starr was born in Hanna, Alberta. Now based in Toronto, Starr is an accomplished writer, editor, performer, and filmmaker, whose work primarily focuses on LGBTQ visibility, gender identity, sexuality, and social justice.

Starr's sister Daphne passed away in 2019, four years after being diagnosed with early onset dementia and atypical Parkinson's disease. Starr channeled her reflections on her relationship with her sister and their experience of her illness through a poetic short documentary, This is What the World Looks Like When You're Gone.

Steen was in Calgary recently as her film (and other dementia-related short films) is being showcased by THIRD ACTion Film Festival. We took the opportunity to ask her a few questions:

‍Your film reflects on your relationship with your sister, who passed away from early onset dementia and atypical Parkinson in 2019. What do you want the world to know about your sister and your own experiences as her sibling and carer during her illness?

My sister was a vibrant person who also struggled during her life. We were never close but after she was diagnosed, I was the one (out of her 4 sisters) with the best ability to be her legal guardian and decision-maker. It meant we reached a closeness and love we never had in our lives, even as she grew more diminished. One way I like to describe the film is to say it's about the resolution that's possible when you step up for someone who needs you.

‍You describe your film as a poetic reflection. What made you decide to take this approach? How does this film connect with (or perhaps is different from) your other body of work?

I'm primarily a writer at heart and expressing the loss of my sister came most naturally in writing. I literally sat beside the ocean one day (on a trip to the coast not long after her death) and observed the world carrying on as it would whether or not my sister had died. I realized this was a core contradiction of grief: we feel the world is irrevocably changed and yet it's exactly the same as it would have been. I developed this into poetic text and began to see the visual images that could enrich the message. I also wanted to give the experience of grief more visibility, and film is a good way to do that. My previous short films are lighter, with lots of humour, so this work is more serious, evocative.

‍What would you want viewers (or article readers) to know about you and your work?

I'm not a trained filmmaker or director, so I tend to feel my way through what I'm doing to hopefully arrive at a good outcome and my works are not quite as "polished" as if I had some serious training. But I've worked with some really good people. I identify as queer and as feminist, so I have an interest in and a perspective on depicting and centering experiences that are often overlooked. This film also encompasses disability, not only because my sister became disabled but so it holds relevance for and is accessible to those who view films differently. I worked with both an Accessibility Advisor and a Disability Depiction Advisor (jobs I created) on how the text is embedded in the film and on how my sister is depicted.

‍What would you say to others who are going through a similar experience as you?

It's not easy to see your family member or loved one go through such a drastic change and lose so much of themselves. Find support and resources to help you; there are many out there who share these experiences. And try to meet your person where they are — being with them in the moment, with what they can do, is a lot less stressful than trying to live with who you wish they still were.

To learn more and to buy tickets to THIRD ACTion's Dementia Care Package short film series, click here.

To find support, visit here.