Amy: My name is Amy Amantea, I use she/her pronouns. I identify as a white settler. I live on the unceded, stolen lands of the Sḵwx̱wú7mesh (Squamish), the xʷməθkʷəy̓əm (Musqueam), and the səlilwətaɬ (Tsleil-Waututh) First Nations in colonial Vancouver. I’m actually in North Vancouver, so that’s specifically Sḵwx̱wú7mesh (Squamish) lands. I also identify as legally blind, I’m neurodivergent, and I have a collection of other invisible disabilities that are impactful on my day-to-day experience of life. I work in the arts, I am an artist, I’m an arts administrator, and I’m an accessibility consultant. I do that work more than full time as I’m also a self-employed person, mostly.

So it looks like various gigs. I do have regular part-time employment with The Arts Club, here in Vancouver, which is the largest theatre company in Western Canada. I work with them as their accessibility coordinator. I’m just newly announced the Associate Director of VocalEye Descriptive Art Society, which provides live audio description for arts and cultural events for blind and partially sighted folks in our community.

And I work with like-- it feels like every theatre company in town, on their festivals and making them accessible. And then I’m an artist, and I work with other artists. So, that’s what I do for work, and what I do for me, [for] play, what I’m all about—I’m also [laughs] just about art.

Q: [laughs]

Amy: As an artist, I’m a performing artist. I’m working on a couple of my own projects. I’m writing a script right now called Disability Tour Bus, set on a moving city bus. It’s a play that unfolds in the middle of a bus and the container of it is like you’re getting on a hop-on hop-off. We go through parts of Vancouver, and we talk about the sights, and then we relate them back to the disability experience, and then there’s a play that breaks out on a bus. It’s hopefully going to be performed Spring 2023, and that’s exciting. And I’m working on my own project Through My Lens—we can talk about that in a bit if you’d like.

I’m also a visual artist—what I call myself is an artist of opportunity. This really means that I’m open to any artistic medium. I love collaboration, and I love it when-- now that I’ve lost my sight, then, you know, another artist that’s really experienced in a certain medium is like, “hey, come work on this thing with me. And I’ll teach you how to do this thing.”

I’ve worked with artists who have done projections and that was really fun. I’m going to be doing some glassblowing at the end of the week, that’s gonna be interesting. I’ve never done that before you know. I’ve done some slam poetry stuff and some comedy stuff and some drama stuff and I also make beaded jewelry and accessories—I call myself the Blind Beader and-- Gosh, it doesn’t end.

Q: [laughs]

Amy: I just started improv classes. I’m trying to keep my life as rich as possible, knowing that my hobbies-- I’m also dragon boater. My team that I manage and am on—have been on for 12 years—is comprised of blind paddlers and sighted paddlers, and we’re happy to say we won a medal in every festival we participated in this year.

Amy: I came out of the womb being an artist. When I was a small child, my parents, I think, noticed that I had a lot of energy. Today, I’m kind of exploring an ADHD diagnosis, which I know is something that lots of adults are exploring. I’m also dyslexic, so learning some things as a kid was difficult. But it was never difficult to be the class clown. I wanted to be on stage, I wanted people to look at me—I had no fear of that.

So my parents chose to put me into acting—they met doing a play. One of the first performances we did was out of a local library. It was very serious for me. We were doing A Christmas Carol and we didn’t have any costumes, what we had were hats. If you were Scrooge you wore a top hat, if you were Tiny Tim you wore a little tam with holes in it—we all had the relevant hats for the characters. I was the only one who could memorize enough lines to be Scrooge and Tiny Tim, but [they] were in some of the same scenes, so when we were in same scenes together somebody else would be Tiny Tim and I’d be Scrooge. And I remember how devastated I was when I accidentally came on as Scrooge wearing Tiny Tim’s hat—devastated that I made the biggest mistake ever.

But that was how I started this love for theatre, and I just-- I grew up in theatre. Once I hit high school I had the most brilliant theatre professor ever, David Beare—I will shout his name to the rooftop as long as I live. He still teaches at the same high school I was at, and it’s been 22 years since I graduated, and [he] also teaches at UBC I believe it is. He leaves a legacy. He always reminds me—we’re still in touch today—that we started together at the same time. Awkward grade eight, awkward teacher coming in.

Q: [laughs]

Amy: He looked like Jesus Christ, long hair, goatee. He wore hearing aids because he is partially deaf, and has a little bit of a deaf accent, also is the kind of teacher who wore dress pants with running shoes, so he was ridiculed by a bunch of the kids. And I was like, in love with this man. And he also identified as gay. I was like, “This man is going to be my guiding star”—I was just enamoured with everything he could offer.  

Anyways, I digress into saying that, as part of my regular curriculum of taking drama, we had extracurricular drama club, for grades eight to twelve, where you learn things like stage management and lighting design. We put all of our shows together, we wrote a lot of our shows, we found our own costumes. It was like being in theatre school, in high school. And I did it for the whole five years that I was there.

I went on to study film and television at Capilano College [now University], and nothing actually really came of that. I got so absorbed in working in the background that I kind of let go of the foreground. I was competing against a lot of tiny, pretty, skinny, blonde girls that got all the parts, and I wasn’t that archetype. It felt non-inclusive. It felt devastating. I’m not afraid of rejection; I understand the realities of the industry, I understand that there’s always a best fit. But I’m also the kind of person that looks at what’s on our stages and on our screens, and I go, “Huh, that’s not representative of my life whatsoever.”

Q: Totally.

Amy: When I was 24, I experienced the first complications of my-- some people refer to type one diabetes as a disability, I never did, until I started experiencing complications. And then it became a list of things that were life changing. So that’s the before times, and through all of that I [was] doing visual arts and a whole bunch of other things. I [was] experimenting in a lot of things to find my niche.

It wasn’t until after disability, after I’d lost my sight-- it took a couple of years to sort of adjust to that—all the daily living stuff that you have to relearn. Then I went to a play that had audio described, that VocalEye was doing. It was my first introduction to VocalEye—they’ve only been here since 2009.

Q: Mm hmm.

Amy: So I experienced a play, and the play was all people with disabilities on a stage. And I was like, why am I not on that stage? How are these folks doing this and I don’t know about this? How is this possible? Because I had told myself that nobody wants a blind artist. You know, how am I going to read a script? How am I going to find marks on a stage? How am I going to do all the things that I was trained to do and could do before? I think that’s a natural thing you ask yourself, when you acquire a disability is who I was versus who I am, and how you try and get back to who you were, but there is no going back. And then I don’t actually want to go back, but that was where I was then.  

Q: Mm hmm.

Amy: I connected with that theatre company right away. It was at that time that I started doing productions with Realwheels [Theatre] and started seeing that being an artist again was a viable thing. I have probably had more interesting artistic experiences as a blind artist than I did before, because now I’m in a niche group. And you hate to say that disability is popular, because it’s not as popular as I want it to be—in terms of representation, we’re not there yet—but there is the sort of coveted niche, where people are looking to cast authentically. That actually puts me in a different position than it does competing against all the size zeros blondes archetype.

And then it just grew from there—it was just about seeking opportunity, and meeting people, and networking with other artists. I wasn’t thinking politically, and I wasn’t thinking about education, because I was just so new to disability that I didn’t have a vocabulary for those things yet.

All the able-bodied folks around me—TABs [temporarily able-bodied], non-disabled, whatever you call them, whatever terms you use—were looking at me as who I was then and who I am now with this, like, “Oh, my gosh, she could have really been something. What is she going to do with her life now? She was on a good track”. All of that weight that you have no choice but to kind of take in because it’s coming from your nearest and dearest. And I think they mean well but they’re new to this experience, too. All of a sudden, the expectations on me—of being married and buying a house and having a good job and having kids—had disappeared, and it actually gave me some freedom to not have to feel the pressure of those things.

So there was a certain amount of freedom in that. But this idea of who you were, who we were and who we are is who we is. I was an artist then, I’m an artist now. I just do things differently. I was a good human then, I’m a good human now. I just navigate the world in a different way. It’s a reimagining of how I do things on an everyday basis. That’s the difference.

I now look at my disability as a gift—it changed my mindset, you know. And I think not everybody gets there, it’s an oversimplification to say that people can do this. But I can tell you that if you get to that place, it really, really releases you to be able to do stuff that you want to do and that you enjoy doing, and also gives you the freedom to just say to folks, “hey, this is what I need,” which we’re also—for whatever reason—groomed to believe we can’t ask for assistance, or ask for support.

Amy: I would say that my first my first experience back on stage after disability was Comedy on Wheels in 2016/2017. Realwheels Theatre is an integrated theatre company. They do professional projects and community projects. With professional projects, they integrate their casts with disabled and non-disabled actors; with their community projects, it’s folks that identify with disability: we devise our own work from our lived experience under the guidance of a professional theatre-maker, a director and-- that kind of thing.

Q: Mm hmm.

Amy: [Comedy on Wheels] was a stand-up sketch comedy, almost like a Saturday Night Live kind of show. We had brought in a gent named David Granirer to teach us like, the blueprint of stand-up comedy. And so you know, as you do when you’re in groups of folks with disabilities, you do-- it’s like the disability shit session, where you just sit around and you talk about all the shitty ableist stuff that happens to you, and your barriers on transit, and you laugh about it, because you’re in your community. We take these experiences and turn them into comedy sketches—making fun of the transit system, making fun of ableism—we invited audiences to laugh with us, instead of laugh at us.

My pieces weren’t stand up—I wrote a piece that I called Snowy Days. We had a great big snowfall the year before here in Vancouver, and I was out in the world with my white cane doing my thing, and people would stop me left, right, and center and say, “Oh, gosh, it must be really hard for you to navigate, you should wear protective eye gear,” or “You should wear boots with spikes on them,” or “You should wear rubber pants.” People wanted me to put glow sticks on my cane, and one lady at a bus stop told me that when there was a shortage of salt in the city her and her husband couldn’t buy salt anymore for their driveway, so they put kitty litter on the sidewalk, so I should carry kitty litter with me [and] sprinkle it on the sidewalk so that I wasn’t going to trip as I was walking down city streets. So I took all of these ideas, at the end of it I kind of looked like some kind of mismatched Sasquatch with a construction vest and a bike helmet and a pair of snorkel glasses.

Q: [laughs]

Amy: And as I’m adding these things on one layer at a time, the audience is like, “Do I laugh? Don’t I laugh? Do I laugh? Don’t I laugh?”

They laughed, and that was the drug. It was the drug of hearing their laughter.

So I did that piece in that show, and I also wrote a parody on Anything You Can Do, I Can Do Better from Annie Get Your Gun with a friend of mine who’s a quadriplegic, using a large power chair, and it was Anything You Can’t Do, I Can’t Do Better. It all rhymed, and at the end Art says, “My dear sightless lass, I can’t wipe my own ass.”

That’s when I discovered that edutainment was going to be part of my artistic practice. I could go and lecture people all day long, and there’s some opportunities that I take that persona on, but I’ve found that many more people learn by watching what I do, or by this comedic disguise.

So Comedy on Wheels was great. A year later I was cast in Realwheels’ professional production called Sequence, which had a professor who was losing their sight. So I played a role in that. And then there’s been a ton of things: I [got] commissioned by the Vines [Art] Festival; CBC commissioned me to design the artwork for the podcast [Inappropriate Questions] and they said it’s usually a comic book kind of cover, and they said [they were looking for] audible artwork, so I decided to write a slam poem called Inappropriate Questions.  And I have to say, funny enough from a tax perspective, I was paid $300 to commission that piece, I had to pay $1,200 in taxes on that piece. And it’s like, disability experience 101: so grateful to get 300 bucks. What the f, I have to pay $1,200 in taxes?

Q: So you lost $900?

Amy: I lost $900.

Amy: The thing I’m working on right now is my personal project that I have been fully funded by the Canada Council and the BC Arts Council. It’s called Through My Lens, and it’s the intersection of my life as a photographer and blindness. I ask people to describe back to me my photos, but I’m not necessarily caring so much about what’s in the photo. I want to spark connection. I want to have a conversation about whether these photos remind them of something in their life, I want to go into memory. I want to take the premise of description and turn it into a pathway of memory.

We did a digital presentation in June, and I did a live presentation at the Vines Festival two years ago. I did another project with the Vines Festival called Oceans of Tears with three other folks about crying and how we’re made to feel ashamed for crying. In November I did a show called Emelia, which was one of the first shows that I had auditioned for that was outside of the disability theatre bubble. It’s an all female or non-binary cast. We have 17 of us in this cast, and the diversity of body shape and size and colour and ability—all of those things were so present on that stage. And people who saw it were like, “I’ve never seen such representation on stages before.” That was such a gift to be a part of.

Q: Absolutely.

Amy: [I wrote a] protest song, which is more of a disability justice thing that I wrote. I’m not a singer or songwriter. But we were challenged in a workshop that I did [in 2021] to write something. So I got together with two other folks, we each wrote a verse. They said, “What do you want the theme to be?” I said, “I have an idea. But I don’t want this to be all about me.” And they said, “What’s your idea?” And I said, “Nothing about us without us. That’s my idea.” In our little threesome, there was me, the white disabled girl, there was a Chinese Canadian, and then there was another white, gay-identifying woman.

So I wrote a verse about disability, my friend Jasmine wrote one verse from the perspective of the Chinese railroad experience of her family of immigrants, and Sarah wrote a piece about gay representation. Our chorus was “Nothing about us without us” and it was the idea that we each have a marginalized intersection and we want to be invited to the table for the conversations. And then, with their blessing, I took the musical phrasing of that piece, because I was so used to it, and I said, “How do you feel about me taking the musical structure and turning this into an entirely disability-related song?” I wrote four disability-related verses and built a whole new chorus and a bridge, [got a] musical director, and then performed that for an online piece.

It’s one of the pieces I’m most proud of, because it’s got just a little bit more of a disability justice tone to it. It’s still edutainment but the tone of it is like “Wake up and recognize, folks,” as opposed to “Here I am, I’m just living my life.” It’s my leap to try to get a little more political—trying to figure out what that political is.

Amy: A lot of my inspiration comes from artists that have come across my path. Anytime that I encounter artists with disabilities, I learn so much from them, even if it’s just a small-time encounter. I love what Persimmon Blackbridge does, especially with her Constructed Identities project. I think that is some of the coolest art that I’ve ever seen.  

When Geoff McMurchy passed there was a bunch of unfinished projects found in his house.

Persimmon was part of the curation team as well as Yuri Arajs. We brought that to the VocalEye platform and talked through the kind of art that he did with the found objects—how interesting these pieces are to look at because I don’t necessarily know how it translates to a blind audience who have never seen before, but for me, having an archival memory-- they’re talking about mixing hubcaps and I’m like, “Gosh, how does that look like art? Because to me, it sounds like a bunch of junk.”

Q: [laughs]

Amy: Right? It’s supposed to.

David Roche, who is a recent friend of mine is a lovely human who does lovely things with his performance art and his comedy—pretty much a classical performer.

The founder of Realwheels—James Sanders—and I are pretty close friends. These are all people that I met post-disability. I owe a lot to them by listening to what they’ve done, listening to how they’ve blazed a path that I could follow in.

The reciprocal is how do I do that for folks coming up behind me, who are artists or new to disability—or not new to disability, but just want to experience art. I have a podcast called Accessing Art with Amy, which is about the intersection of art and disability. I have learned so much and been in contact with so many artists around the world with disabilities that are doing their thing. Lisa Anita Wegner creates universes in her home as part of the Dada movement, and she is fascinating. She’s already been so impactful on the kinds of things I think about doing. Erin Ball out of Kingston, who does circus arts. Alex Bulmer, who’s a blind artist in Toronto. Like I said, Persimmon Blackbridge. I could go on and on about all the folks that I think have made me think about what I do differently.

Maybe differently is not the word, but taking what they can offer with what they do. “Oh, I didn’t even know that this kind of thing could be done. How can I experiment with something like that in my own artistic practice?”  

Q: Absolutely.

Amy: Talking with Lisa, I’m like, “Oh, my gosh, how can I create a universe? Can I create a universe? How would that exist in my world? I’d love to explore that kind of idea.” The stuff that I do has little pieces of all these people I’ve come in contact with. I’m a collection of collaborative memories of other disabled artists, in some kind of way.

There’s always an imprint. I hope that I’m the imprint on others. I hope people are like, “Hey, that’s a really cool thing. I’m gonna remember that.” And then, you know, when they do a thing, they’re like, “Hey, remember this thing?”

There’s a non-disabled artist that I love the bones of—a performance artist called Tania El Khoury, in New York. She’s a Lebanese transplant to New York, does a lot of academic [stuff] in the arts, but also does a lot of pieces. One of her pieces you’re in sort of like a fake cemetery, fake grass with headstones, and you lay on the ground and you’re listening to the voices coming through the graves. These are people who’ve died in war-torn parts of the world that she grew up in.

When I think about political art, I think of Tania. And I think, “How can I build to some of that stuff with disability justice?” So it is kind of the trajectory and how I’m planning to build. I’m constantly thinking about how I can incorporate more Disability Justice as I develop my artistic practice.

Q: That’s amazing. I love that you said you’re “a collection of collaborative memories”—I think it’s incredibly important that we name where we come from. Having all of these influences and being inspired by various pieces of art is how we all work. It’s important to name the fact that that’s our lineage—it’s part of having integrity as an artist.

Amy: When I started working with Realwheels Theatre and with VocalEye, I was introduced into this different world of theatre. VocalEye partners with theatre companies to be able to provide live description, and had partnered with the Arts Club way, way, way back when. In 2019, the Arts Club [and Bard on the Beach] did a symposium called [Theatre and] Accessibility in a Digital World.

I was a part of putting that symposium together, through VocalEye. I helped co-facilitate some of the sessions and was on some of the panels—that’s where I met Alex Bulmer. It was really exciting to bring some folks from the disability community together.

Then here comes 2020 with the pandemic, and they waited a year thinking the pandemic would go away,  and then—I think in the fall of 2020—realized that this thing was going to stick around, and [the Arts Club] put out an ad for an Accessibility Coordinator. I decided to go for it and they literally hired me on the spot. They were like, “We’re so glad you applied.” I thought, “Oh my gosh, I’m like way out of my depth here,” because I was intimidated by the big, powerful arts company.

Q: Mmm hmm.

Amy: I love what the Arts Club is doing. I love that they are now embracing changing the narrative, because largely, they’ve always had the same actors on their stages—they’ve always been a bunch of white folks. There’s a lot of criticism around that. Even the organization itself has got a lot of white folks in it. How do we have more representation of different stories on our stages? That’s hard to do when your main subscription base is the 65+ white haired, white person who gets mad because the von Trapp family in Sound of Music is cast with diverse children.

You’re like, “Okay, well, these are the people that purchase our tickets,” and it’s like, “Well, those people won’t always be purchasing your tickets—how do you bring in the next couple of generations who want to love theatre?” You only do that by inviting them—literally inviting them because there was a culture there of “Well, nothing needs to change.”

So there is a cultural change within the Arts Club—it’s slow moving, I will admit, but I think that any change is better than no change. Even if it moves slowly, there is change happening. My role there is to look at things as much as one person can on a part-time salary, part-time hours—to look at different parts of the organization in terms of accessibility, like hiring, physical environment, access to the stages, access to being an audience member, ASL interpreted performances, relaxed performances, those kinds of pieces.

And then I applied for a grant with Disability Alliance BC, and I was able to do a whole bunch of disability-centric workshops. Part of me [wondered] what the community wants in terms of-- for example, we have a whole bunch of workshops that you can be a part of at the Arts Club, and you don’t have to be an actor, you can be anybody to come and play. So do people with disabilities, disabled folks, want to be in programs where they are integrated with able-bodied folks? Or do they want programs that are their community, so they can go into a space and feel like, “I don’t need to justify my access need? I just get it.”

Q: Mm hmm.

Amy: I had talked to some folks in the community—because I don’t ever profess to speak on behalf of everybody—and said, “What is it you’re looking for?” Because specifically with a DABC grant, it is about access for people with disabilities in particular. And there was such a mixed response to that.

Some people were like, “Yeah, I want to be able to take any mainstream thing I can, anytime I want to, and feel like I belong there.” And I absolutely get that. But then there are some people who say, “Yeah, I love that. But I also would love to just be with my community and make connections and network with folks and be in an environment where I don’t have to justify my existence.” It was a reinforcement to me that access is about options, not about a one size fits all model.

So we have some programs that are specifically for folks with disabilities and some programs that are integrated programs. We did two workshops that were specifically for the disability community and one of the [pieces of] feedback that came through was, “So nice to see a disabled person leading a workshop.” There’s this need and this desire to see our people leading our workshops.

I put together a Deaf-led theatre workshop [for October 4, 2022], and I said, “You know what, Arts Club? No ASL interpreters allowed.” This is a space where we’re providing a space for the Deaf community with a Deaf-led theatre artist to do a workshop, whatever that workshop looks like for them. Let this be a Deaf friendly space. We have a Deaf staff member that works as a front of house person at the Arts Club who was helping facilitate this—being the voice of the Arts Club, doing the land acknowledgement, walking people to the group, that kind of thing. This is a Deaf-led space, we do not need to have hearing people interrupt this space. This is about representation. And so Deaf bartenders, Deaf ushers, Deaf ticket takers, those kinds of things—we’re building to that. It’s a different way of imagining a space.  

During the pandemic, everybody switched to a virtual vessel and they were all like, “How do we make this virtual?” “How do we make this accessible?” [Suddenly] access was on people’s radars. There is a way to conduct a Zoom meeting that’s accessible, and I can tell you how to do that—so that became a thing that I did. And then it was like, “Now you want to have ASL interpretation or audio description integrated into a video? Okay, I can put those pieces together for you.” It came to this point, Q, where I have more work than I know what to do with, but I’m one person.

Q: [laughs] Yes.

Amy: It’s a first world problem. It’s also a big disabled problem, because there aren’t enough specialists in a day to do everything, but the work is so valuable that a part of me works myself to exhaustion, knowing that if any of these people can at least learn some of these things-- like, you can’t have a show and expect ASL interpretation to happen in 24 hours of the show. You need to book that in advance. You can’t give an audio describer your tape and say “Here, can I have this tomorrow,” you need time to do it. You can’t throw relaxed performance together out of nothing. You can’t build relationships with the disability community without doing things in the right way.

My approach to access has been to look at this as a continuum. We’re all on a different line on this continuum. Some of us know a lot about access, some of us know nothing about it. Let’s figure out where we are on that continuum and make purposeful steps to move forward. My other catchphrase is that there’s no finish line in this work.

Work with communities, then you get buy-in, and then you build relationships, and you haven’t rushed to put something substandard into place, which sends the opposite message to a community. That sends the message that “We’re just ticking boxes, we didn’t actually care what your experience was, but woo! We’re accessible.” As opposed to “Hey, we really want to work with you all, because we’d like you to continue coming back to this festival. What is it you want? What is it you need?

Q: Mm hmm.

Amy: My highlight for some of this work has been putting together curated events specifically for the blind community, because the blind community does face some additional barriers that other folks with disabilities don’t necessarily face. That’s an oversimplification obviously. But, you know, 75% of the blind community doesn’t work, so you’ve got a lot of folks who are on disability income, and a lot of folks who are experiencing barriers to even just cooking their own meals or access to transportation, being able to afford tickets. Having to choose whether they feed their kid or go to a show—well, gosh, that choice is obvious, right?

So they’re not going to shows the same way as some wheelchair users that I know that are still working full-time jobs, so they’re earning an income but their barriers are different. I put together some curated events where we look at low vision-friendly programming, which is different than described programming. Low vision-friendly means we create some pre-show notes, which is like, “these are the two characters, this is what they’re wearing, this is likely what the set looks like, here’s a little synopsis of the show. And at one point in the show the main actor takes off his pants and moons the audience and they all laugh.” I would bring a group of blind people to the show, the tickets were free, we would feed them, we would bring them transportation, we would take them to two or three festival shows in the day, and then we would get them a ride home.

That would make it as barrier-free as possible. The flipside to that is that you can only bring in a small [group of] people because it’s much more expensive to be able to provide that. How do we open that up to a bigger scale? And these are great test audiences, because then you can go back to your grant funders and say, “We want to be able to invite more than 10 people to a show.”

Q: Totally.

Amy: In working with individual artists-- large theatre companies aren’t going to do integrated description in their shows. They’re just not. But individual artists are all over that. They’re all over, like, “how can I take access into my own hands?” This is what I call creative access. You’re not bringing in a third party to describe the show. You’re putting integrated description into your show. So instead of “here, take this,” it’s “here, take my umbrella.” You put in as much stuff as you can. Then if you have some pre-show notes that say, “here are our characters, here are our costumes, here’s a synopsis,” that should be enough information to make your show low vision-friendly.

If you’re an artist who’s writing their own show, you have full control over that—you can think about it from the very beginning. Another one of my catchphrases is, “access begins with A”—we think about it at the beginning of the process. You can grow and develop and bring in cultural consultants to be able to guide you in that process.

I’ve become kind of an expert in integrated description and creative access. Oftentimes I sit with an artist and I experience their show and I say things like “here’s where I’m confused.” You know, “there were two voices in a space and I didn’t know which voice was which.” Or “there’s a moment where something happened and I couldn’t figure out what the movement was.” I’ve worked with Erin Ball, Veronique West, and some other-- those are both disabled artists doing their thing and really interested in the creative access movement.

There’s not going to be enough describers in the world or ASL interpreters in the world to be able to offer access to everything that we do.

Q: Mm hmm.

Amy: There just isn’t capacity for that. So, what an artist can do on their own to integrate access in any way? Veronique for example is also working with a Deaf consultant on, you know, can we do captions and can we play with the captions that are in different colours to inspire different emotions of what’s happening. Are there coloured lights that we can use instead of the sound effects, so that there are enough things for Deaf audience to be like, “Oh, this is really visually interesting.” And she’s working with me on, what are the audio components that are coming in? What do these sounds mean? Is there a vocabulary that we can build with light and sound, looking at them like characters in this piece.

I do a lot of that work with independent artists. And, gosh, there’s been so much joy and so much value in all of this. The learning that I get to do from other folks—I get to spend time with Deaf folks and learn from them as much as they learn from me. Again, if you want to talk about collaborative collection of memory, you know, this is the impact that we make on each other.

The pandemic has been the two years that I’ve had solid work, which has been a gift for me and for other disabled folks that I know who were like, “Oh my gosh, I’ve been able to work.”

Q: [laughs]

Amy: The gift also comes with the curse. I just got a letter the other day that said-- I take 12 different medications a day and they’re all very expensive, and they have been mostly covered because I had low income—and now I’ve just hit the threshold, which is $42,000. Now I have to pay for them all, but $42,000 a year is not enough money to pay $3,500 a month for medications. They put you in this place where you’re disabled, but you’re not disabled enough. It’s not like I can put anything in the bank account because it all goes right out to medications and rent.

It’s not different from being on disability income, except that I’m doing more work. I’m not in a place where I could save for a holiday or you know, buy somebody a gift and not worry about how it impacts the rest of my budget. That’s a whole systemic thing but that really, really bugs me. Before I was working, I spent the last 12 years—from the onset of my disability—doing the work for free.

Q: Mm hmm, yep.

Amy: I’m the chair of the Northshore Advisory Committee on Disability Issues, which works with the three North Shore municipalities on built environment and all sorts of accessibility things. We look at blueprints and plans and talk about projects and try to integrate accessibility that is above and beyond building code, and that is freaking exhaustive.

For years I’ve been saying, “if I was a consultant, you’d be paying me $600 for this information,” but because I’m a community member, a volunteer, the emotional labor of being your teaching moment feels like a non-reciprocal relationship, because it’s an advisory committee so it’s not as if people were like, “Great, we’ll do this.” It’s like, “Well I see what you’re saying. However, barrier-free balconies means that the envelope of the building’s gonna leak.” And I say, “Screw you. That’s not what that means because we’ve seen barrier free balconies, it means you have to spend a little bit more money, but you do it upfront. Oh, and if you’re gonna be around for 75 years, that’s gonna benefit 75 years’ worth of people?”

The labor of being the teaching moment, especially with architects and folks in built environments—it’s like beating a dead horse. I hate that phrase, but that’s what it feels like.

Q: Yeah, truly.  

Amy: You just can’t get forward. Whereas in the arts, people are like, “Oh, I really want to know this information. I may not be able to move just yet on that but I’m going to think about how you get money to do that.” Things don’t move that fast, but people really want the information. They want to be able to incorporate the things that they can, so they look at this like, “Okay, what is the thing I can start with right now? What are the things I can build towards? What are the capital projects I need to find money for?”

I do a lot of presentations to a lot of organizations on what I call access 101, which is basically like an introductory to the disability experience. We talk about unconscious bias and performative allyship and a whole bunch of those other disability concepts—inspiration porn, guide and service animals, interacting with folks in a dignified way, language—and people are always like, “Oh, my gosh, I had no idea.”

Q: [laughs]

Amy: It’s like, “well, now that you know, it’s incumbent on you to make a decision to do better.”

[I tell] arts organizations, if your website has an accessibility statement, you know, “we value accessibility, we know we’re gonna get it wrong, and please join us in the work in in doing it and let us know what your experience has been, because this is ongoing work for us.” That’s one thing. If you tell me that you have accessible seating but you don’t have accessible bathrooms, I can make a decision. Let’s just be transparent about what we have—and what we don’t have, even more importantly—because then you give the autonomy to the individual to make the decision instead of hiding it, and me showing up and being like, “What, you don’t have an accessible bathroom?” or “You didn’t tell me there wasn’t an elevator, and I’ve got balcony tickets.” That’s when we do a lot of harm and we do the opposite of making relationships. I’m really an advocate for just being honest about where you are.

That’s what we can do to support people at the very, very, very entry level of our relationship. The very short-term is, “this is what we got, this is what we don’t got. What we don’t got, we’re working on building on and it’s going to take time.” And it’s going to take folks who come to our venues to say, “Oh, gosh, this bathroom is not as accessible as it should be.” Okay, “why and how?” And that does require a certain amount of emotional labor on an individual. And I think acknowledging that that is a thing is important. Like if somebody said to me, “The bathroom here, I know it says it’s accessible. I know that it’s built to BC building code, but that’s quite—” Like, that’s not all that should be, as we all know.  

Q: Yeah.

Amy: Perhaps you say to that person, “Thank you for giving your feedback. I’d like to offer you two tickets to an upcoming show.” We’re thinking about that, instead of just being like, “Oh, my gosh, I’ll just exploit all the information I can get from this person. Oh, and while you’re here, what do you think about this? What do you think about that?” I’m super conscious about that because I know what it feels like to just be the teaching moment and not having any idea what happens with the information you share.

Q: Yeah.

Amy: Right?

Q: Yeah, the relationship-building is absolutely key. Non-disabled people need to recognize and be mindful of the fact that it is constant emotional and intellectual labor to constantly be educating people on it in a way that they will be receptive to.

Amy: Come off sounding too hard, you’re a bitch. Nobody wants to listen to you. Right? People with disabilities-- This is another thing of my training is like, we’re allowed to have a bad day. We’re not all sunshine and roses all the time. It’s not about you when somebody says, “Fuck you. I don’t want any help today.” [laughs] You know? It’s not about you. It’s about the fact that they’ve been asked 9 million times today, because the world looks at them as not being able to be independent. Don’t let that stop you from interacting with the next person who is like, “Oh, my gosh, I really need a guide but nobody’s asking me and I can’t find anybody.”

Nuance is so important, because that means that people aren’t afraid to interact, or-- I mean, again, it’s like everybody’s afraid to make a mistake, especially with language. Just be gracious about it. Just say to somebody, “I’m new to this.” After I teach a two and a half hour sighted guide workshop, I say, “If you have forgotten everything you have learned in this workshop, know this: having a conversation with the individual about what they need in that moment, is going to save you every time.”

And the truth is, Q, I don’t know what anybody does with any of the information I share.

When I teach a workshop, I don’t know if people are like, “Huh, I’m gonna think about that,” or whether they go, “Well, that workshops done, I’ll go just back into my life.” What I do know is non-disabled people go home, and they’re like, “Oh, I don’t have to think about this disability thing.” When I go home, it’s with me all the time. It’s my everyday life.  

Q: Yeah.

Amy: I’m carrying those bags with me every day, every waking moment, every journey I go through. Whereas when you learn that in the workshop, and you come home, you set those bags down and you don’t pick them up until you need them again. That is part of the emotional labor—it’s every moment of every day. I have to justify why I need help finding the ketchup in the grocery store, whereas any sighted person walks up and says, “Where’s the ketchup?” And it’s no big deal.

That is part of the emotional labor. Even if I get what I’ve asked for, the way that I have been made to feel because I’ve asked for it, that I’m in some way a burden to them in that moment.

That carries a huge weight. And I experience that all day, every day.

That is my life. Those are the bags I don’t put down.

So anyways, I know that you know this stuff.

Q: It’s worth saying, as well. And it’s worth saying on the record.

Amy: It’s a part of the conversations that I have. I’ve chosen to be the teaching moment. I think that there are some folks in our community who don’t have the capacity or the stamina to do that work. How can I support the next person who’s like, “I don’t know, I don’t have the ability to ask. I’m not comfortable asking,” you know, because everybody’s in a different place in their disability journey, right? If I can offer to somebody who’s non-disabled a little bit of insight so that the next person that they see-- it’s a little less burdensome for them to do the emotional work to educate, that’s a win. It’s a slow win, with 8 billion people on the planet, but, you know, that’s the choice that I’ve made. There are moments where I’m like, “Why am I this—?”

Q: “Why did I do this?”

Amy: “Why did I do this?” because of that emotional labor.