Raining Revolution: JEDI in the Arts

Meharoona 0:05
You're listening to raining revolution Jedi in the arts. That's justice, equity, diversity and innovation in the arts. Tune in to hear conversations with various artists about these themes.

Brought to you from CFUV 101.9 FM and I'm your host Meharoona Ghani. Raining revolution is coming to you from the traditional territories of the Songhees, Esquimalt and WSÁNEĆ peoples whose historical relationships continue to this day.

I'm very excited to welcome my guest Jacqueline Ko. Jacqueline Ko is a Vancouver based soprano and the founding artistic director of Opera Mariposa.

Opera Mariposa is Canada's first fully disability led and run opera company. And this is something very beautiful that I've been wanting to talk to Jacqui about in the context of art, and accessibility and inclusion. And when I found out about this from a friend of mine, I just thought, I have to reach out and Jacqui kindly agreed to be a guest with me here today. I'd like to start off first by asking you a little bit about a little bit more about yourself and also for you to name which traditional territories you are calling us today from?

Jacqueline 1:59
Well, I'm joining you today from the traditional unceded lands and waters of the Musqueam Squamish and Tsleil-Waututh) First Nations. Thank you for having me. I am an operatic soprano, I started singing at the age of 10. And I just fell in love with it immediately. You know, my first teacher was an opera singer. And so she told me straight away that I had a voice that was suited to opera. That's just how I got into it didn't look back. I'm also disabled, and I have Myalgic encephalomyelitis, ME. Previously sometimes known as chronic fatigue syndrome or CFS, although some people feel that's a slightly dismissive name, I guess you could say, that doesn't really encompass the broad spectrum of the symptoms, and, basically what the illness is. I actually became disabled, I was already ill, but I became disabled by my illness. I think a few weeks after I started singing. So I've been disabled for my entire career, and obviously that's had a huge impact on how I have to practice my art. When I was 20, I founded Opera Mariposa with my best friend Robin Hahn, and a big part of the reason we decided to found a company was we wanted to make opportunities that were accessible to me and to my specific needs as a disabled singer.

Meharoona 3:41
It's beautiful how you moved through that space and wanting to make it accessible to yourself, and I'm sure to other people, what does JEDI in the arts mean to you?

Jacqueline 3:57
For me personally, it means feeling safe and protected in the practice of your art, being able to speak up without fear, and knowing you will be heard. For me on a personal level, it means that I am aware that I am always learning that things like obviously, as a disabled person, accessibility is something that means a great deal to me. And accessibility is a continuum. It's not an end result, necessarily. It's not we've checked this box. We are now accessible. There is, I think on an industry level, you know, looking at it from the perspective as a producer, it means ensuring that the incredibly diverse community of people who want to engage with opera and who are already engaging with opera can do so safely, can do so with room for and respect for their entire identity, with room for and respect for their physical and mental health.

Meharoona 5:09
Everything you're saying resonates so much for me with my heart. I hear words like feeling safe and protected, feeling heard. And with that comes feeling seen. And I think for those folks who have varying disabilities, there's often a need to feel seen and heard. And depending on the disability situation, sometimes folks feel isolated. And so the platform you've created is a platform where folks can feel seen and heard and feel safe to participate in all their layers of identity. And that's what I'm hearing this sort of intersectionality of identities going on. What is your definition of art?

Jacqueline 5:57
I think that art can be anything and that anything can be art. Everything you look at has an aspect of design of function. It is present everywhere. And you know, I'm a performer, I'm an opera singer, I don't write the music that I sing. My job is to interpret what's there on the page. So the music that is there that the composer and the librettist put together, as it exists there on the page that is already art, but also the act of reinterpreting it, to put it on the stage is also art. And I think, it's also putting it on the stage you have the aspect of engagement with the audience, especially, you know, depending on the type of show it is some types of performances have an element of audience participation, for example. And then I also, especially since the pandemic, I've pivoted more towards digital performance. I recorded a single and I put out a music video. And that's also has other aspects that aren't in a live performance, there's audio, video, editing, lighting, all of those aspects that I was suddenly dealing with all of those, all of those are also art.

Meharoona 7:28
Do you see the creation of Opera Mariposa as a form of art?

Jacqueline 7:38
Yeah. I mean, it started from us wanting to make art and wanting just yeah, we started actually, back then I wasn't using the term disabled about myself, I was chronically ill. But when we started it, our first tagline was by young artists, for young artists. And we wanted to make opportunities and give opportunities for people to make art.

Meharoona 8:09
I'm curious why you were not using the terminology disabled back then, and what led you to use it now. So one is personal for your personal self, but also in terms of Opera Mariposa, the word disabled, I read in the description of your website, but there I also read, there's people without disabilities and Opera Mariposa as well. So I'm, I'm curious about the use of the word disabled?

Jacqueline 8:38
Well, for me at the time I hadn't, I hadn't applied the term to myself yet at that point. So that's why it wasn't part of our tagline, and such. I just hadn't used it for myself yet. And I think part of that was having to sort of go on that personal journey where you realize that, I had to realize that, I guess you could say I counted as disabled. There is something that I find with a lot of people who have chronic illnesses who have challenges where there's a point in where they are disabled, and they haven't necessarily realized that they have to struggle with the idea of am I disabled enough to call myself disabled. It's especially hard for people I think, who have dynamic disabilities which can change from day to day. You know, for me, for example, I have used a wheelchair. Most of the time, I don't, but I have. And so there's that idea that disability is much narrower than it is that if you don't look like the little figure on the sign with the wheelchair that you're not disabled and I think it is one of those things that you just have to think through yourself and decide whether that is how you identify, and it's also, for me, it was kind of difficult because my illness, ME, is somewhat stigmatized to this day. In that it was, there are a lot of people who've, who have been diagnosed with ME were initially dismissed as, basically as hypochondriacs or, the sort of, it's all in your head. Or it's in quotes, "just depression", which is problematic on several levels. And so I had to sort of struggle with a little bit of that. And, the thing that a lot of people with, it's sometimes called an invisible illness, in the sense that you can't necessarily see it when you look at someone, and also that some, some people with this illness if they're entirely house bound, or bed bound, you don't see them anymore. But the people who are out and about with an illness, like ME, frequently hear the phrase, but you don't look sick. And, yeah, one of the reasons that I am so open about being disabled, is I sort of wanted to challenge that idea that disability has to look a certain way, that chronic illness has to look a certain way. And that I can stand on a stage for the length of a performance. But I'm still disabled.

Meharoona 11:52
Yeah, and that takes courage and strength and inspiration for yourself and for those who are watching you. And everything you're saying resonates with me too. I've always wondered about the word disability, and I go back and forth in terms of when I'm using it and when I'm not. It's been a conscious decision on my part of using it and being very visible in the sense of being open about it, so that others can speak to it and learn from it. Learn about disabilities and people with disabilities. But then there's other times where I don't use it because there's a part of me that wants to protect myself. And sometimes I just don't want to talk about it anymore because I want to take a break.

Jacqueline 12:51
Yeah, that is such a thing that it's a bit of a chore really to have to continue educating people over and over and over.

Meharoona 13:01
Yeah. Yeah, and I've often wondered at some point is there you know, for lack of a better word, quote, unquote, "a line", where one needs to also focus on self care, and to ensure not triggering oneself by bringing attention to the disability, either in discussion or through the art, what do you think around that if you feel comfortable talking about it?

Jacqueline 13:27
I mean, for me, my illness is part of every second of every day of my life because one of the hallmark symptoms of ME is called post exertional malaise, or post exertional neuroimmune exhaustion. And what it means is that any exertion physical or mental causes a sort of flare up of the illness, causes a worsening of all symptoms. And for me, what that means is that I spend all of my time thinking about basically can I afford to do this? Can I afford to read this short story? Can I afford to watch an episode of a TV show? Can I afford to have a shower today? And so like it informs every second of my life. So there is a point where I mean sometimes you do just want to not think about it for a second, that's completely understandable. And, yeah, I made the choice, like I said, I made the choice to be very visible, very open about my disability to bring awareness to it. And to bring awareness to the fact that this is something that is this major in my life. And this is the experience, you know, and I wouldn't say that my experience is necessarily everyone's experience even with this one illness, it is a spectrum illness, there's mild to moderate to severe to very severe, and so two people don't necessarily experience the illness in exactly the same way. But, I wanted to talk about the fact that this is what my life is like, this is what it is like to have a chronic illness and to be disabled. And I've had people reach out to me because I've talked about this on stage before, I've talked about this in interviews, and I've had people reach out to me, basically, to share their stories with me because they felt seen by me talking about this.

Meharoona 15:50
That's beautiful that that touches into one of the other questions I had, it was around how does your art connect with people or bring them into a conversation about the themes that are important to you. And so what I hear is, you know, the area of disability and chronic illness is very central and integral to you and to your well being, and also to communicating with others through your art. And, it is about talking to people so that they are aware of what it is and creating this open, visible environment through yourself and through your art. I'm going on 20 years with MS. But only in the last few years, I'm in this progressive situation, and I've been saying a lot lately, I'm learning to be disabled, actually. Meaning I'm navigating all these systems trying to figure out what does this word mean to me now that it's even more visible? There's a lot of navigating of my mind I have to do.

Jacqueline 16:57
Yeah, I mean, like I said, even just identifying as disabled is its own journey. And, I made a very conscious decision to be public about being disabled and about having ME, and I made those based on having to navigate the rest of the world, as someone with ME and as someone who is disabled.

Meharoona 17:23
When I hear you say thatI feel this energy of empowerment and courage coming from you. I feel it. I want to come back to a question I had, how is art relational to yourself and to others? I feel like you have touched on it. But if you feel like you'd like to add a little more, I welcome you to do that.

Jacqueline 17:49
Yeah, there has always been in Mariposa a bit of a focus on sort of community building. Like I said, we originally billed ourselves as by young artists, for young artists. So we were connecting with other people in our peer group in the opera community of Vancouver. And we still work with some of the same people who we worked with in our very first season so there is a real sense of community building. I always knew when we started the company that I wanted to do shows that would be used to, that would, I wanted to raise awareness of my illness, I wanted to raise money for charities that support research and community resources and such for people with my illness. So every year we've done a benefit and awareness show. We've raised, I've raised, I believe, at this point over $125,000 for charity over the past decade.

Meharoona 19:08
Wow. Congratulations on that.

Jacqueline 19:09
Thank you, yeah, every May which is the international awareness month for ME, and fibromyalgia, and I think several other chronic illnesses. One of the first benefit and awareness shows we did, when we were selling tickets, we had phone calls from people who were just so excited because they're people with the illness who had never seen an awareness event or had never seen one that was somewhere they could go, never seen one in their area or one in the present. They'd looked online, they'd seen an event that had happened but several years ago somewhere on the other side of the world. They were just so excited that someone was doing something. And yeah, we've made a lot of connections through that through just being open and finding other members of community.

Meharoona 20:12
This is amazing, what you've done, and your focus on community building, and your focus on charity, and fundraising and awareness around ME. What does community building look like, who is the community, and how has there been an evolution of the organization and the work that you do?

Jacqueline 20:37
There has been an evolution, I'd say, like, we started it just as an opera company for young, professional singers. And over time, as we built our audience, we did build an audience that was both sort of invested in us. You know, we, I guess you could say, we gained fans. But also because we always done benefit and awareness shows we did gain an audience specifically in that community. And of course, since 2020, we've had to pivot more towards online output. And yeah, and we specifically have focused more on community building with other chronically ill and disabled artists.

Meharoona 21:35
And I would imagine pivoting to online, it must have been even more global, I'm guessing. Have you attracted international audiences?

Jacqueline 21:47
Well, yeah, we were actually in the planning stages of our may show when we went into lockdown back in 2020. And so we had to pivot that to an online benefit and awareness campaign where we did sort of like a prize raffle that was all hosted online, and I released a single instead of a live performance. And I remember when I put out a single, I actually got messages from people from the other side of Canada and from people with the illness saying - I used to be in opera, thank you for bringing awareness, thank you for raising money, and I'm happy to support. This May, I put out a music video, so it's up on YouTube now, and I'm not sure how wide our audience is. I'm not sure if I can check, if I can see who's been watching where.

Meharoona 22:52
That's so cool. I'm so excited for you. I would guess by putting it through the online digital platform that you are tapping into a broader audience. It'd be interesting to know who they are. And I think there there probably is a way to find out. Just going forward a little bit about what do you dream for - it could be through either your art or more broadly, but what is your big dream?

Jacqueline 23:28
In general, my dream is to continue making art, to continue singing, and for opera to be accessible to me, and for it to be more accessible for people like me.

Meharoona 23:44
I'd love to know who's your most favorite opera singer?

Jacqueline 23:50
I'm gonna have to say Virginia Zeani.

Meharoona 23:54
And do you have a favorite opera?

Jacqueline 23:59
I feel like the answer to that changes regularly. I've done productions were going into it I didn't think I'd be that crazy about the opera. Maybe I was interested in the specific role I was doing but I ended up absolutely loving the show like falling in love with the music falling in love with the character or just the specific production or whatever. At the moment I'm very into "Turandot."

Meharoona 24:28
Nice. Beautiful. In terms of your dream - a dream about continuing to make art and singing and continuing opera to be accessible. I think this is a beautiful dream to have and something that can be driven by somebody like you and people like yourself who believe in making something like this a reality. And it is a reality. It is happening. Are there new projects or a project you are thinking about?

Jacqueline 25:02
There are things I'm thinking about. I don't think there's anything that I can announce publicly yet. I will say that I am currently looking at a lot of different music. I'm looking at new repertoire. I just I've been looking at

some Lucrezia Borgia...bit of Norma...my last voice lesson, I just started looking Il trovatore.

Yeah, so there's no announcements to be made. I'm looking at things.

Meharoona 25:39
That's great. Have you ever thought about writing your own opera? Have you ever thought about writing your own music and have you?

Jacqueline 25:47
I don't think I have the technical capability to write my own music. The thing that I have done is frequently for benefit and awareness shows, I make what we call a musical review, where I take existing pieces and put them together to basically to tell a story, and I would use the music and I would also speak between the pieces to tell the story of my illness and to talk about my experience as being a person whose disabled, a person with chronic illness. So I would take pieces from a whole variety of genres. So I'd do opera, and art song and musical theater, and even I think I've done some pop music and country songs in some of those shows all mixed together to tell the story and to talk about what my life has been like and what my experience of becoming disabled was like. Yeah, and those were honestly some of my favorite performances I've ever done.

Meharoona 26:54
Is that something that you do in Vancouver? Where can people get to one of your shows if this is something that you continue to do, and how can they find out more about this?

Jacqueline 27:09
At the moment those were for our May benefit and awareness shows. At the moment, given the pandemic, we are not doing live performances. Still, I am high risk. A lot of people involved in Mariposa are at high risk. But we do have the content that we've put out online for our May benefit and awareness campaigns that we've done since 2020. You can head to operamariposa.com and you'll find the links to all of our channels, Twitter, Instagram, YouTube, etc., as well as links to my own personal Twitter, Instagram, etc.

Meharoona 28:02
So is there anything els you'd like to share anything that we might have missed, or any questions you might have of me, it's free flow form here, if anything you'd like to add?

Jacqueline 28:15
Just thank you for having me.

Meharoona 28:18
Sure, no problem. I'd like to really thank Jacqui for being a part of this program and for just sharing so much valuable information, making herself visible, making Opera Mariposa a space of safety and for folks to feel seen and heard, and a place to create awareness through the art practice of what accessibility and disability and chronic illness is like, and what folks are doing through that. But not only just if we take away the disability side of things just this evolution of art and how it can be used innovatively to create empowerment and inspiration and courage and strength for all kinds of people, those with disabilities and those without. So I'd like to really thank you, Jacqui, for being a part of Raining Revolution. And I really would like to thank you and your team of people who are doing this work in all the avenues that you're trying to create awareness and I hold you with great gratitude for doing this and thank you again for being being with me today.

Thank you for listening to Raining Revolution: JEDI in the arts. For contact information of the guests or to listen to other podcasts, please visit CFUVpodcast.com

Unknown Speaker 29:55
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Transcribed by https://otter.ai