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Hi, my name is Lisa, and I’m a storyteller. I am a Public Artist with ArtworxTO for The City of Toronto for 2021. I’ve worked as an actress, a filmmaker, and a theatre and film producer. Since my illness took over in 2008, I have been exploring my creative passions in the art world. I love fashioning immersive theatrical, multi-sensory universes for myself: as an escape, as therapy, as healing, as survival, and as a means of connection. The theme that runs through my work is Liberation Through Dreaming.
I was diagnosed with complex Post-Traumatic Stress Disorder (c-PTSD) in 2009 and Ehlers-Danlos syndrome (EDS) in 2018.
I stopped being able to function completely in May, 2008. At the time, I lost my production office and essentially went missing in action. I started to make art videos on my laptop to let my friends know I was ok. I started on Ontario Disability Support (ODSP) in 2011.
Ehlers-Danlos syndrome being an invisible disability made it confusing for me. My core muscles had seized up in childhood to keep me upright, and this left me with a constant feeling of being physically unstable. I couldn’t even sit properly, as my pelvis was seized so far under. In addition, I suffered from childhood migraines and stomach cramps, and spasms. Starting from the time I was three years old, I would collapse if I had to walk for any length of time.
Later, if I pushed myself physically, I would also have cognitive drop-outs, which were terrifying. Nausea and headaches continued, and I felt like I was drowning much of the time, but no one ever asked me if I was okay. My friends thought I was faking, and my pediatrician told me that I was lazy and obviously just didn’t want to participate in activities or I would. With no other options at the time, I sucked it up and started to block out the pain, and avoided activities where I was mocked. When my brain had a creative project to focus on, however, it was consumed with that, and the pain of living lessened.
In grade two, I got the idea that I wanted to mount a L’il Orphan Annie play, and I remember walking into the principal’s office and hearing myself say I wanted to put on a play. We never rehearsed to the end but we put on the show in the auditorium. And every kid wanted to be in it. I didn’t realize it then, but I’d found the thing I’d be doing for the rest of my life.
In grade nine, I got the lead role in my high school’s production of The Heiress, thanks to a new drama teacher who broke the rule of giving the leads only to graduating drama students. I kept doing a production or large art project every year. In grade twelve, I produced They Came From Denton High, a full musical with a live band.
In university, I called the 20th Century Fox Marketing department, told them we had a terrific Rocky Horror cast, and asked if they could support us. They arranged a People With AIDS (PWA) fundraiser with radio advertising support, and we performed to a packed house. Through that connection, we were booked to perform at the Toronto SkyDome. I realized by 17 years of age that I was a natural-born producer.
After leaving theatre school, I started acting in film, TV, and theatre. I worked for a few years and was successful with a string of bit parts. I did some good theatre but felt very unfulfilled creatively. In 1999, I produced Last Tango in Transylvania, an original play for The New York Fringe Festival, where I won my first Best Actress award.
In 2002, I made Bonded Pairs, my first film, and knew then that I would be a filmmaker for life. I have now produced over 40 films and more than 700 art videos that have screened all over the world. I run Mighty Brave Productions.
Since my 2018 EDS diagnosis and being seen by six different specialists at the Goodhope Clinic, I understand how serious my illness is. I am saddened that I didn’t believe myself and kept trying to force a different lifestyle. Now I take over twenty prescription pills a day and do a consistent 1-3 hours of daily bodywork. I get cabs to all my medical appointments. I budget in grocery delivery and do many things online. I rest as much as I need. Pandemic life has allowed me to teach and speak to communities all over the world. The new online life is great for those of us for whom getting our bodies around is hard.
I will end with the inspiration I have recently received from my curator, Sean Lee, who is the director of programming at Tangled Art + Disability. Sean has shared the concept of disability, art, and accessibility as the last avant-garde, one that reframes embodied difference as a means to resist traditional, aesthetic idealities. Orienting towards a “crip horizon,” we gesture towards the transformative possibilities of a world that desires the way disability can disrupt.
Let’s go disrupt!
See my work at www.mightybraveproductions.comTags: Ehlers-Danlos syndrome, film, pain management, theatre
Categorized in: Stories