Jacqueline Ko and Opera Mariposa are back to support British Columbians living with chronic illness (Photo: Stephanie Ko)
May 16th, 2022
Canada's only opera company run entirely by persons with disabilities, Opera Mariposa uses opera to promote inclusion and support charities working for change.
Until June 1st, you can join them online for music, videos, shopping and a LOT of prizes in support of the ME|FM Society of BC.
We spoke with performer Jacqueline Ko and Opera Mariposa manager Stephanie Ko.
What's Opera Mariposa been up to in the last year?
Jacqueline: Our last annual benefit and awareness event raised over $10,000 for the ME|FM Society of BC, bringing our fundraising total to over $100,000!
Since then, we've been hard at work on a few different projects - all digital, due to the pandemic and the fact that so many of our team members are immunocompromised or medically high-risk.
For example, we've been releasing a video series called Opera Treats, which offer bite-sized opera performances that are free, accessible and online. Folks can find those on YouTube, or on our website.
Stephanie: We also teamed up with a Toronto opera company called Loose Tea Music Theatre to present a series called 'Holding Space for Disabled and Chronically Ill Opera Artists in Canada'.
And from November through February we held online sessions connecting with amazing folks across the country - offering peer support, building community, and fostering dialogue about the barriers we face and the changes we want to see in the Canadian opera sector.
What's being featured this May?
Stephanie: Our tenth annual Benefit + Awareness event runs until June 1st - all month, all online, and all for charity.
Performers Robin Hahn, Christina Baltais, and Jacqueline Ko
It also includes a shop-to-give event, where folks can check out exclusive merch that supports the charitable cause through Mariposa's new online shop. And as the pièce de résistance, we have a giveaway with over $3,500 in prizes donated by local businesses!
Like last year, the event honours the International Awareness Month for Myalgic Encephalomyelitis (ME) and Fibromyalgia (FM). All the proceeds support the ME | FM Society of BC, with every cent being tripled due to matching donations.
It's a cause that's very close to our hearts, since Jacqui and I have both lived with ME since childhood. We know how life-altering this illness is, and it's one that affects over half a million people in Canada.
How do you do all this while also living with a debilitating condition like ME?
Jacqueline: Opera Mariposa was built on the idea of making shows that it was possible for me to do. So even in the planning stages of every production, we’re looking at, “Is this possible? How do we make this possible? What is needed for this to happen?”
At the beginning we’ll discuss what's doable in terms of scheduling, how many rehearsals are possible per week for example. Then during the rehearsals, I might bring up something like, “I’m having trouble lifting this prop by myself due to pain in my hands”.
Opera Mariposa manager Stephanie Ko (Photo: Diamond's Edge Photography)
Stephanie: One of the key things is that we don't do it alone. We have a lot of great people involved in every project, a team that contributes their time and energy year-round behind the scenes, and the support of colleagues throughout the indie arts sector.
We try to divide up tasks based on each person's aptitudes, access needs and current bandwidth - we have a very interdependent model in that respect. So I'm always looking for ways to collaborate or delegate.
There's also a lot of adaptation - finding hacks to make things more efficient and accessible. These days I have a reduced capacity if I'm upright, like if I'm standing or even sitting up. So we've adapted things so I can do them lying down. It's unconventional, but it works.
How can people with chronic illness find the energy to pursue their creative goals?
Jacqueline: Each person’s experience can be quite different. I think the most important thing to remember is that there's no one right way to be an artist, or to engage with an art form you love - and there's no shame in needing access measures to do so.
Engaging with art while managing disability or chronic illness is a learning process. There’s trial and error, and each person must discover what's possible for them, where their limits are, and what can be done to help them not overextend themselves.
I also think it’s important to remember that there's no arbitrary level at which you are “disabled enough” to ask for accommodations - everyone should be able to ask for their access needs to be met.
there's no arbitrary level at which you are “disabled enough” to ask for accommodations - everyone should be able to ask for their access needs to be met.
Stephanie: The reality of living with an illness like ME is that not only is my capacity different than it was before I developed ME, but that it's changed over time. I'm cautious about generalizing my experience to others, because my own needs can fluctuate day by day.
I try to focus on things within my current capacity, adapt things to make them more doable, and find substitutes for things I really miss. And I remind myself that rest can be productive too - that it's essential for incubating ideas, and gathering the energy needed for creation.
How can people support Opera Mariposa?
Stephanie: We'd love it if folks would check out our current Benefit + Awareness event! There are both paid and free ways to join in, and of course sharing is a wonderful way to help us raise awareness.
To learn more about Opera Mariposa, visit their website: OperaMariposa.com
Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to firstname.lastname@example.org!