♪ Opening theme music ♪
[Diane:] Hi, everybody!
Thank you all for coming, sorry we were a bit delayed. I hope everybody's fine.
Okay, so… Um.
Thank you for being with us. We… this is a very… promising conversation,
it's the first time we are doing a livestream, and we have a lot of topics to cover, so this is exciting.
And, uh, before we start, this event is recorded and livestreamed, so, if you don't want to appear on the video,
please deactivate your camera. Also, you're all muted right now, or at least most of the people in the room are muted.
so, please, if you're not speaking, stay muted. Also, we have chat options. The chat conversation will go to me directly.
and you can also ask. There will be a Q&A at the very end, so you can use that option. This event will run until 7.30pm Eastern,
and, what else? My name is Diane Kolin. I'm your host today.
I'm the founder and director of ArtsAbly, which is based in Toronto in Canada, but we really work with people
in different parts of the globe, and for those who don't know.
ArtsAbly is a company supporting the work of artists and arts professionals with disabilities in all kinds of domains.
And one of our ongoing projects is a podcast called ArtsAbly in Conversation
that can be found on all streaming platforms. And really, the aim is to let artists or artist professionals tell the audience
what they do, and to talk about their journey in the arts, whether it's academically, as a performer,
as a composer, a dancer, singer, painter, photographer,
a theatre artist, cinema. So, a lot of domains.
And today we celebrate our 50th episode of ArtsAbly in Conversation.
And we are lucky today to have a panel of 13 guests who all have been individually interviewed in the past.
And you can find their episodes on our website. Our guests today
represent many of these domains I just talked about, and they're based in Canada,
in the United States and in Turkey. And before presenting them to you.
I just wanted to say a word about someone who cannot be here today, but she does a lot for ArtsAbly.
and it's our social media manager, Alexia Vassos. We post content during the week, every day, almost every day,
and she's the one behind these posts, and I wanted to recognize the good job that she's doing.
Okay, so let's hear about our guests. So I will start... I will call everybody by their names,
and I will start by Alex Bulmer, can you present yourself, please?
[Alex:] Hi, Diane! Can you hear me?
[Diane:] I hear you fine, yes.
[Alex:] Yes, you can. Good. Hi, my name is Alex Bulmer. I use pronouns she, they.
I have a kind of scruffy-ish, shortish light brown hair.
I'm, um, a female-presenting human in their late 50s, and I am wearing kind of a multicoloured,
kind of… cozy top, it's oversized, and there are big paintings behind me that my grandfather painted.
[Diane:] Thank you.
[Alex:] Oh, do you want to know what I do? Is that part of our introduction?
[Diane:] Yes, okay. I work as an actor, playwright.
[Alex:] Yes, okay. I work as an actor, playwright,
screenwriter and director.
[Diane:] Thank you. Emily?
[Emily:] I just had to unmute there, all right? I'm Emily Schooley. I use generally she, her pronouns.
I'm a light-skinned adult woman with long red hair and green eyes.
I'm currently sitting on my couch in my living room, coming to you from Tkaronto,
which is traditionally Treaty 13 territory, and also covered by the Dish with One Spoon Covenant.
So I'm a multidimensional artist. I'm primarily actor, filmmaker, voiceover artist.
I both direct and produce my own work, producing only of necessity.
And as well, I am more recently a psychic oracle as well, so I've started doing
readings for people alongside my more traditional artistic work.
[Diane:] Thank you. Very interesting, I didn't know that.
Kemal.
[Kemal:] Hello everybody, my name is Kemal Gorey, he, him. I have brown, gray hairs and glasses.
I am a media composer, I identify as blind. And I am also serving
as an accessibility advocate at RAMPD, I'm currently serving as the Secretary, I'm so glad to be here.
[Diane:] Thank you, and for those who don't know, RAMPD is Recording Artists and Music Professionals with Disabilities.
We have a few people from RAMPD today.
Malicious Sheep.
[Malicious Sheep:] Hello, everyone. I am Malicious Sheep. I'm a multidisciplinary artist, photographer, vocalist, poet, voice actor,
community organizer, all the hats. They then pronouns.
I am to you from rural Canada, specifically in Anishinaabeg territory.
And super pleased to be here. Multiply disabled, immunocompromised, neurodivergent,
chronically ill and disabled. The whole combo. But yes, glad to be here.
[Diane:] Thank you. Laura.
[Laura:] Hello! I am Laura Brody, and I am a middle-aged woman with brown hair, shoulder length, with turquoise headphones,
and a slightly blurry background of my living room slash work area. And among many other things, I'm an artist and curator
and the founder of Opulent Mobility, which is an exhibit that reimagines disability as opulent and powerful.
I'm in Monrovia, California, also known as Tongva Land, and I'm really pleased to see you all.
Thank you. Rory?
[Rory:] Hi, I'm Rory McLeod. I use he, him pronouns. I'm a light-skinned man with
short brown hair and glasses, and you can't tell on Zoom, but I'm also very tall.
Um, I am the executive and artistic director of Xenia Concerts,
which is an organization that works with the neurodiversity and disability communities
to redesign concert experiences and make them more accessible
both for the artists and for audiences.
[Diane:] Thanks.
Stefan.
[Stefan:] Thanks, Diane. My name is Stefan Sunandan Honisch,
and I'm joining you today from the traditional ancestral and unceded territory of the Musqueam Nation,
where the University of British Columbia, the Point Grey campus is located.
I'm a sectional lecturer in the theatre studies department
at UBC's Point Grey campus, and I'm a scholar in residence at St. John's College,
which is also on UBC's Point Grey campus.
[Diane:] Thank you, Andrew?
[Andrew:] Hello, I'm Andrew D'Antonio and I'm joining you from Round Rock, Texas, which is the unceded territory of the Tonkawa,
and I am a music historian. I teach at the University of Texas at Austin.
I have an ADHD diagnosis and have an interest in disability studies and access for quite some time, and my…
I'm helping my daughter here, so I'm going to go off-screen briefly, but thank you all for being here. I'm delighted to be here.
[Diane:] Thank you.
Elizabeth.
[Elizabeth:] Hi, I'm so excited to be here with so many incredible people.
A lot of you I've been dying to meet, so this was a great opportunity. Thanks for inviting me.
I'm Elizabeth McLain. I am Assistant Professor of Musicology and Director of Disability Studies at Virginia Tech.
I'm also a member of RAMPD, and I'm the founder of Open the Gates Gaming,
which empowers everyone to tell their stories through tabletop role-playing games,
to try to make that more accessible and inclusive.
I'm autistic. I also have mobility disabilities.
Right now, it's a lot of collators, but also canes, crutches, whatever's gonna work on that particular day.
And I have chronic health disabilities. Most of my work focuses on disability culture and the arts.
And trying to move towards a more ethical model of scholarship, where we're truly
partnering with artists and communities and helping them tell their stories.
instead of… kind of making their work our own.
I cannot remember if I… did I give a visual description at the beginning?
I get very distracted, so I have notes that I'm working off of,
but I'm a white woman in my 30s with longish blonde hair and glasses.
Um, yeah.
[Diane:] Thanks. Robin.
[Robin:] Hi, my name is Robin Hahn, my pronouns are she, they. I am a white femme person with light brown hair
and a big ol' pink headband coming to you from my voice studio
on the unceded occupied lands of the Musqueam,
also known as Vancouver.
I am an opera singer, a stage director, a vocal coach, an actor, and a content creator in the Um, making content on YouTube and…
about the intersections between opera and disability, and I co-founded Canada's first 100% openly disability-led and run opera company
in 2012, ooh, 2011? Ooh, that's a date I should know.
Um, but yeah, that's me. It is so lovely to be here and to speak with all of you wonderful, wonderful humans.
[Diane:] Thanks. Deshaymond.
[Deshaymond:] Hello, everybody. I am Deshaymond. I answer to pronouns, he, him, his.
I am a very handsome Black gentleman with curly, tight curly hair, and light brown skin,
and I am an R&B music artist, singer-songwriter, composer, producer, and CEO and founder of Deshaymond Media. Um, it's a platform,
not only will I run my music business, but I also provide visibility to people with disabilities and
all of the intersections. So, I'm so happy to be here.
[Diane:] Thank you. Heather?
[Heather:] Hi, my name is Heather White Luckow. My stage name is Heather Feather.
I have a PhD in music theory, and I'm on my second career, which is working as a children's musician.
I am a middle-aged white woman with brown hair, shoulder length.
pale skin, green eyes. And I'm currently sitting in a room here on the island of Montreal, where I keep a lot of books.
And somebody mentioned a painting by a grandparent, and I actually have paintings by my grandma up behind me.
Oh, and I have multiple sclerosis. This is my disability. And I'm a speaker for RAMPD as well.
[Diane:] Yes, great community. Well, thank you all for being here. Malicious Sheep, did you want to
provide a visual description of your… uh, your visual right now?
[Malicious Sheep:] Yeah, sure, I also get distracted, so I missed that part.
[Diane:] No worries.
[Malicious Sheep:] I am mostly known… well, fully known as an artist
with my disembodied voice, as well as my profile picture, which is a photograph of a bristly floral protrusion
from a Red-rooted pigweed, which is a wildflower, and nestled in there is a Phidippus audax juvenile
who is perched, just tucked in the flower of that plant.
And the photograph is mine, yours truly.
[Diane:] Yes. Well, thank you so much for this introduction, and thank you for everybody joining us
also, a few people joined us from our audience members, so welcome.
Um, I will start immediately with the first question, which is for some of our music performers here,
Deshaymond and Heather. Can you share an experience of performing in a venue that were inaccessible to you?
And also, how did you cope with this situation? And were you able to speak with the venue, give feedback after the performance?
And I will start by Deshaymond.
[Deshaymond:] Thanks, Diane. I also forgot to mention that I am an ambassador on deck for RAMPD,
Recording Artists and Music Professionals with Disabilities, and I'm an advocate, a disability rights advocate.
Um, you know, my first festival that I did, you know how there's, like, multiple stages, and they're all, you know,
made for the event. Well, there were no ramps, there were no, like… it was, like, this huge step up.
And I literally had to have two people from my team kind of hoist me up
in order for me to get up on the stage, and then head to the front. So I definitely did have a conversation with
the people that were managing the stage afterwards, and,
you know, I asked them, like, if they knew that I was a disabled artist when they booked me, and
you know, what a… if they even thought about accommodations, and just gave them a little bit of advice on for future,
how to, um you know, accommodate blind people.
Oh, and I identify as blind. I don't think I said that either.
[Diane:] Okay, and so… so what… what were their feedback? What were their response?
Did they contact you back and say, we need advice, or did they just say, okay, we will do better next time, or what?
[Deshaymond:] No, well, in that moment, they told me that they'll do better next time, and they said that, you know,
normally, they have this and that and this and that, but, you know, they… what I will say is that they were…
they tried to work around not having accommodations.
They really were… definitely nice people, and they treated me human, and made sure
that I had everything that I needed outside of the accommodations that I needed.
[Diane:] How was the concert?
[Deshaymond:] Oh, I killed! I definitely killed!
[Diane:] Okay, thanks. Heather, what about you?
[Heather:] I've had a number of experience with stairs in dark rooms and flashing lights, and none of which I can handle.
So, uh, stairs are tricky. Sometimes, well. Generally, my balance is poorer than the average person.
And often, I find myself, when I'm tired, it gets even worse.
So, part of what helps us balance, when we have balance issues, because we have, like, 13 centers in our brain,
and some of mine don't work anymore, is our vision. And when it's dark, I also can't see.
I'm wearing shoes, my feet can't feel, so I don't have that,
you know, I'm losing that sensation as well in my feet with neuropathy.
Peripheral neuropathy. So, yeah, it's the access to stages. So I find that a lot of them have kind of these rickety stairs.
Often it's dark, especially, like, awards ceremonies, which tend to be in dark rooms.
And then you have black stairs with a makeshift railing that isn't the most stable.
And then the stair is a big step up. So, it's always like, will I use a cane? Won't I use a cane?
Is this gonna hold me if I fall? So this, this is the question.
I've only once had an experience with lights. I have, like, pupil issues, where
one kind of dilates and the other one is doing the opposite. It's called Marcus Gunn pupil,
related to MS as well. And so I find flashing lights, strobe lights, it's all just completely…
discombobulating, so whenever I've mentioned bright lights or that, always taken care of. Never a problem.
Really good experience. And… In general, whenever I ask about stairs, I've only had one experience
where they were really unable to accommodate, and it was very much last minute.
It would have preferred not to have to use a very long set of outdoor stairs with no rail.
That was nerve-wracking, and I was also by myself, I didn't know anybody, I didn't feel comfortable asking somebody for help
to get up those stairs, so I was just super cautious. I did actually talk with somebody recently about it,
where I did a performance, and accessed a few different parts of their venues.
And it was a really productive conversation. And… it was, uh, yes, we realized.
And at the last minute, it was very difficult to try to do, but next time we're definitely gonna do better.
And we recognize that this is an issue. And we're putting a team together to address this in our organization in the future.
So, it was a very positive response, and… I couldn't ask for better.
[Diane:] Oh, well, that's great, because sometimes we don't even know who to speak to, or we don't…
They will say, okay, I will report that to my direction, and then you never hear from… Uh, from… from anybody.
[Heather:] Well, this was a group and a festival that actually gave participants a chance to debrief with the head of the organization.
And everybody had that opportunity. And it was just a quick, like, if you wanted to talk about your experience.
And it wasn't specifically about accessibility, it was actually about, you know, the festival itself, but I brought up the accessibility, and…
Yeah, it was super productive. And a very positive response, honestly, as somebody who identifies
as having accessibility needs, I honestly couldn't ask for better. It was… it was great.
[Deshaymond:] That's awesome, Heather, and you know, even when, you know, that railing is rickety,
I mean, at that first festival that I did, it was literally just a crate.
And then a huge step up to the stage. So, it was… it was crazy, but they… they really… they got me up there.
but I found that… My problems are with accessibility, getting to the stage. They're lesser now, because I'm advocating beforehand.
I always call the venue and let them know what I need. And they're usually pretty good about it.
[Heather:] I did have the opportunity as well to signal beforehand. There was just one thing that once somebody couldn't fix recently
because they just said, well, we… don't… like, the elevator's broken.
[Deshaymond:] Right.
[Heather:] You know? We can't do that. But, like, we… there's some things we could do, but yeah.
[Deshaymond:] That's awesome.
[Diane:] Okay, thank you. I have a related question to that, but for the direction side, or the curators, or the artistic directors, so,
I have a question for Laura, Rory, and Tracy.
When it comes to, like, organizing events, whatever the event is, what do you have to consider? What challenges did you face
in some venues that might not be entirely fit for your organization or your event?
And also do you work with venues to improve their accessibility, or do you tend to go back to those you know are accessible?
And I will start with Laura.
[Laura:] Hi, and thank you. Um, I didn't mention it before, but a lot of my chronic issues are the more invisible kind.
They're, like, chronic PTSD and Hashimoto's and other such things.
But because my artists all have access needs, and because I am actively working with people
that I want to be able to come in, who, for example,
might use wheelchairs or walkers, I need to find places that are accessible in a variety of ways.
And I find that inevitably, I'm doing a certain amount of educational work
with every venue that I work with. That is just part of the process. That's okay.
Sometimes that's turned out really poorly. I've really actually run into situations where
people didn't understand that, for example, having a bathroom in a separate building
far away from the site might be an issue.
You know, that… Really basic things. There are a lot of supposedly set into law
from the Americans with Disabilities Act about staircases and access
that they have many properties that are so-called grandfathered in, that they are not actually accessible, and
finding ways to work around that can be a real challenge.
Some people are very open to it, and you can always find ways to make it more accessible,
including videotaping or photographing the work,
and showing it on the side of the building. There are a lot of ways we can get around that.
But some people are open to it, and some people get really cranky.
[Diane:] Yeah, I had a…
I imagine that when you invite people to exhibit their piece of art,
you also need to attach them on the, you know, on the walls and things like that.
And I always… when I go to these exhibitions and I see that everything is high, or
the lights are not correctly set, and you have them in… if you're lower, you have them in the face, things like that.
So, do you have that kind of conversations with the venue?
[Laura:] All the time. sometimes I'm the one hanging, so that's less of an issue,
but otherwise, that's… it is a real conversation to have each time, of trying to set things a little bit lower, so that,
a wheelchair user isn't necessarily going to have to strain their neck
looking up at it. That everyone has to do a certain amount of adjusting,
which is actually really, I think, beneficial, and it really starts a great conversation.
I will usually advocate for American Sign Language on associated talks and other things.
I will, wherever possible, have Braille signage and detailed art descriptions for all the pieces.
Sometimes it's a real challenge juggling all of that, and sometimes funding is a real problem.
That's just often a problem. But there are ways.
So, it depends on the venue, it depends on what budget is available,
but trying to find ways to make things more accessible to as many people as possible is always an educational experience.
Both for me and the venue, and usually for the audience members,
since I work with both disabled and non-disabled community members.
[Diane:] Rory, what about you? I know you are doing a lot of...
You're dealing with a lot of venues, because you change, uh, you do some collaboration with venues,
with some organizations that have their own, so what… how do you deal with all that?
[Rory:] Yeah, thanks. You know, I was reflecting on this and thinking about the fact that
the accessibility of a venue doesn't just come down
to the physical accessibility of the space, it also comes down to the people running the venue, and
so we've heard some really good stories from
Heather and Deshaymond about good, positive experiences they've had when they gave feedback.
And we found that to be the same thing, that sometimes what seems to be a barrier can actually be
overcome if you have the right team and they're offering the right kinds of support.
Um, but we do, you know, so… just to put things in context,
we present adaptive concerts at Xenia Concerts, and so we have partnerships with presenting organizations.
One of our big partnerships is with TO Live here in Toronto, but then we also work with other theatres.
And then we also have partnerships with other music festivals,
so we're, in those cases, using whatever venue they have available to them,
and then we also go and do on-site concerts at places like specialized schools,
care facilities, children's hospitals, that kind of thing. So…
One of the good things about working with disability support and service organizations is that
they usually have those supports in place already,
and we can just go in and bring them a great musical experience.
When it comes to venues, it depends a lot on when the building was built,
what the standards were when it was built,
and whether it's been renovated, and whether the organization has had the budget to renovate
for physical access, but just to give an example of, you know, unexpected opportunities for problem solving.
One of the theatres that we've worked with has, you know, pretty typical standard seating that's fixed to the floor.
And any wheelchair or mobility device users in this call will know that
those places often have maybe three seats that are accessible for accessible seating.
They're often at the back of the hall, or off in the corner.
They often don't have a seat next to them where, you know, a companion can sit.
So that was a pretty major accessibility concern for us, with our audiences.
But we discovered from talking to the venue that the stage was accessible.
So we were able to set it up so that we had some seating with, you know, just
fold-out chairs on stage, and some space for people who are wheelchair users or mobility device users on stage.
And we just reoriented the performers a little bit, and made it possible
for some of the attendees to be on stage with the performers,
and some in the theatre, in the audience.
So it's just one example of when you think you might have a venue that's
not gonna work based on what you see when you walk in,
but because of the collaboration with the team, it actually ends up working out
pretty well. But then we've also had
kind of the opposite experience, where we've walked into a space and thought, oh, this is perfect.
The floor is completely flat, there's natural lighting,
you know, we don't have to worry about stairs or physical access.
And then it turns out that… they don't use that room often enough
to have all the technical capabilities to offer closed captioning,
and screens, and all of the other access supports that we like to offer our audiences.
So, it's always a constant learning process, but we found that,
usually the venues that we work with you know, they're choosing to partner with Xenia Concerts for a reason.
And that's because they want to do their best to make
an event as accessible as possible. So,
generally, we've had positive experiences, and
if we walk into a space that's clearly unusable, we just won't do our concert there.
[Diane:] Yeah, for sure. And also, it's a learning curve for everybody.
[Rory:] Right, yeah, for us, for the production team, for our artists,
for our audiences, too, sometimes.
[Diane:] Well, I have this question for people who are acting, whether it's theatre performance or opera,
when you're working on a theatre. And this is a question for Alex, Emily, and Robin.
When you're working in this theatre company settings, or a film production settings,
then how do you ensure your access needs are met, and how do you
and how do you work with also the rest of the team, we were talking about the learning curve for everybody.
So do you have examples of productions that worked for you,
that are accessible, that you worked with the team to make it as accessible as possible?
And I would like to ask Alex first.
[Alex:] Yeah, I mean, um, well, I think…
it might be helpful to share just some of the strategies that I always have ready to go,
whether it's theatre or film, and I sort of go through this kind of checklist, and it's like, transparency about
my access needs, and making it really clear that the word needs, I use that for a reason.
It's not wants and hopes, it's needs. Real, real transparency about what I need in order to do my work.
Included in that is I always ask, if it's theatre, I always ask to have access to the costume designers and the set designer,
just to make sure that I understand, you know, what they're thinking, and make sure that it's in line with my access needs.
I place really clear boundaries on the fact that I am employed as an artist.
And if I… if I'm being pushed to start to serve as, like, an access consultant
or a trainer or educator for the team, then I make it really clear that I expect to be paid for that work,
or to be prepared that I may not have the capacity, and they'll have to
address those issues with someone else.
But I just… I really… I try and keep that boundary very clear.
I put it all in a rider so that it's part of my contract, everything I need, so it's all signed off.
We all… I always set up a review process throughout, a process,
throughout a rehearsal and performance process so that…
because you can't always predict what you're gonna need, because you don't exactly know what's gonna come along. So we have a review.
So we have a review.
And I like to give feedback right immediately, whether it's positive or
where improvement is needed, because I think that's how we all learn, so…
That's the process, and I actually just got off an amazing experience with a film production,
shooting "Being Heumann," the Judy Heumann story. It's a feature film that is being shot in Toronto.
It was just the best. They had an access coordinator, they had an access team,
they had access documents that everybody got with their sides and their call.
They had a language document. So, accessible language, as well as a sustainability document.
And if somebody had to leave my side,
there was always somebody else right there. And they used my name, they were all…
They understood how to describe what was going on around me. It was an excellent, excellent experience.
That's what you get when you get a really good access coordinator, you know, it's part…
it's embedded in the project, it's not just an add-on.
[Diane:] Well, this is fantastic. We are all waiting for this movie to come.
[Alex:] It's gonna be good!
[Diane:] Yeah. Emily, what about you?
[Emily:] Sure, so I'm gonna start by preface this... Or, sorry, prefacing this by saying that
for a long time, I was not aware that I was allowed to have needs.
I think that might be relatable, especially to women, or especially to other people that are…
Especially underserved, but it's… for me, I'm… I just realized, too, I don't think I shared this when I introduced myself.
But I am primarily invisibly disabled. So, I present as an abled person.
Among some of the other things I deal with are chronic pain, you know, food issues,
complex PTSD, as well as neurodivergence.
So, you know, for me, I also, I deal with a lot of anxiety, just kind of based on
a number of things, but…
Yeah, I think the only project I've ever worked on where I was specifically asked for access needs was
when I did, um, my guest spot on "The Squeaky Wheel," which I think, as anybody
may know, it is a disability-led production, so of course they had an access coordinator.
But, you know, something else, and this is kind of…
tangentially related to access that I want to mention, two things, actually, is that
even with "The Squeaky Wheel," just in many other productions I've been on, for myself, just because I am
a mid-sized actor, like, I'm probably about a size 12, give or take,
I've had to start bringing my own wardrobe to a number of sets, because even…
You know, if there's no wardrobe fitting beforehand...
Like, I've had more than once where, you know, I was told, oh, there'll be wardrobe for you on set.
If they didn't even just take my measurements just as
someone living in mid-sized body, I've often found that they're still kind of a very implicit fatphobia
that pervades in the industry, where wardrobe would still not fit me.
And just it, you know, it becomes really… honestly embarrassing for the production that they were not
better prepared to accommodate a professional.
But, yeah, kind of beyond that, it's like, with my own journey, with even just learning more about my invisible disabilities.
I was also very late diagnosed as neurodivergent, so
for a long time, I just thought I was just a little bit quieter than normal theatre kids.
But something else that I think we're still working on in terms of just getting better access in terms of the industry is even, like,
the audition process now. So, for myself, you know,
I live in a very tiny Toronto apartment, where every time I need to self-tape as an actor,
and this is even just to audition to get parts,
I'm now spending at least half an hour kind of setting up a backdrop, setting up lighting, setting up cameras, setting up audio…
And for me, with my neurodivergence, like, it just… it adds
a lot of extra emotional labor on that.
Where, you know, even the audition process itself, like, step one in getting work as an actor,
is not very well accommodated for those of us who are neurodivergent or have other needs.
Something else I want to mention, too, and this is just… has, unfortunately, has been my own
experience with the industry is that,
the way that specific film unions respond to reports of predators.
So people that, you know, men that sexually harass women, things like that.
They're still very, very poor support there, where
if you're not a union, if you're not covered by a specific union, like DGC or ACTRA or Whatnot,
and if you're assaulted by someone in the industry who may be a member of there, but if it did not occur on a union-led set.
just in terms of, like, you know, gender justice, justice for survivors, the union is still also, like,
the film industry is also very poor at
actually giving a damn in those cases, where even if it's reported,
they're hesitant to do very little unless that there's a liability on them. So
this is a little bit outside of the realm of, kind of, traditional accommodations, but
one of the reasons I personally don't audition for more projects now are...
I see, you know, I see men out there who have sexually preyed on women,
and they're being supported with excess.
They're still getting certain projects where
those of us who are survivors are not accommodated in the same way.
And so, and that can also lead to, you know, more trauma, more invisible disability.
So that's something where…
You know, I've made reports about certain people, and I have not...
Those reports have not been acted on. So,
that's something where I would like to see increased support for survivors down the road.
But kind of outside of that, like,
circling back to, like, being on set or being in, you know, being in the rehearsal hall for theatre,
one of the other kind of important accommodations that I've needed are, you know, certain food accommodations, where…
if I have sensitivities, if I have allergies.
I have to make, you know, certain requests. It's like, oh, I need low-carb, I need this, I need this,
so that my body doesn't fall apart while I'm in the process of making this work.
And I find that professionally run sets are a little bit better at that, but
as you're kind of an actor within that indie space, sometimes,
you're not accommodated in the ways that you need to be, so…
They're still kind of a balance to, like, finding a way to be able to ask
like, for me to ask for what I need… you know, even to, like, help mitigate some anxiety that I feel.
Sometimes it's successful, sometimes it's not, but
I think it's still very much a work in progress there.
[Diane:] Yeah, and I guess... Robin, I will ask you the same question.
But I guess it will be the same.
Whether you are on stage for theatre production, opera, or film, you will find these kind of similar issues. So,
Robin, can you also give us your side of it?
[Robin:] For sure, yeah, I mean, uh, to start, as you might imagine, opera is not exactly
a super forward-thinking art form in,
in the grand scheme of things, it's a little bit… it's a wee bit traditional.
It slightly has to be dragged kicking and screaming into the new millennium.
Still. So there's a lot of work to be done, and, like,
I'm in a very privileged place in opera, because I live in and work around
a space where this work has been being done for the last, like, decade.
So, for example, I'm able to go into an audition for an opera using my, like,
concert canes. For reference, I am holding up a sparkly ombre, pink to Diamante cane.
So they're not, you know, subtle in any capacity, and I auditioned with them,
where a lot of opera singers might hide their disabilities if they could.
Which is really, really common in the operatic space.
And I go into those auditions, and I will talk about my needs right away,
and if they are not willing to play ball, then that's their loss and not mine.
And again, I am very lucky to be able to create
an artistic career that is multifaceted, and I have the opportunity to do things like direct operas.
Where I can create accessible spaces and set that precedent
that not only is more inclusive of other disabled artists
around me, but also, like, I directly benefit from that precedent if I am
directing an opera, and creating a space within the operatic world where that's expected,
the next audition I walk into may be more affected by the space that I have just, that I've created.
For example, we've… I've created, you know, masking policies in operatic spaces,
which, again, you might imagine the operatic world would be pretty reticent to do any masking,
you know, given that we expectorate loudly
upon each other for money.
And many people experience that it could be limiting for singing.
Which is true, but we can… but it turns out that masking policies are still,
you know, of course, beneficial in any space that they can be used.
And make that space more accessible for immunocompromised folks.
And, you know, if you just set the precedent of coming into a show
with, as a director, for example, with, hey, you know, here's my…
here's the masking policy I used in the last show.
Then this new company can go, Oh, that was actually not that hard! You know?
And is more likely to use it, as well.
So it, like, it… it happens bit by bit over time in the operatic world, particularly
when shown that access can be easy.
That it's not that hard. You can do little tiny things, cheap, even free.
And they make their spaces so much more accessible.
I've also, like, within the, sort of
film acting space, I've been
partnering with my agency. I work with Kello Inclusive, which is a
disabled talent agency across Canada,
and we've created with
the agency examples of access riders that are
video format, that are easier often for film actors to create.
Because video access riders are more commonly used in the UK,
certainly, than they are in North America right now, and if we can
set a little bit of a precedent that this is something that, in the film industry, people might expect,
we'd love to see that! So yeah, that's been a really wonderful partnership to create, and of course,
to have, because now I, you know, when I book a role,
It's real easy. And it frames it to, again, as easy.
Because it turns out, making spaces just that much more accessible is… not hard.
[Diane:] It's just a matter of, you know, finding things to do before that.
And working together so that it's done.
And sometimes, as you say, it can be free, it can be…
You know, masks, there are masks for singers, why not try, right? There are things to do.
Yeah, thank you.
I have a question for the people who work in university, so professors or lecturers.
And this would be for Stefan, Andrew, and Elizabeth.
How do you… how is accessibility seen from this academic point of view?
And when you think of that academic point of view,
what needs to be considered? For example, when a conference is organized.
Or, either as an organizer or as a speaker.
And also, as a classroom, right? When you have a classroom in a… where you're teaching.
What are these good practices of accessibility in academia? And I want to start with Stefan.
[Stefan:] Thanks very much, Diane. From my perspective,
I think the… some of the insights that Jay Dolmage offers in his 2017 book,
"Academic Ableism: Disability and Higher Education." Some of those insights remain deeply relevant.
In particular, what he has to say about neoliberalism, and the ways in which neoliberalism
turns everything, including access, into a commodity.
And, related to that, there are two further problems. The first…
Both of which are connected to the commodification of access, if I can put it like that.
So the first has to do with the resulting appeals to budgetary constraints
and appeals to limited resources. In some cases,
those justifications for the lack of access might be
in some sense, true, or plausible.
But that such justifications, that access is missing or inadequate because of budgetary constraints,
that doesn't deal with the fundamental question of why those
budgetary limits exist as a way of signaling the relative unimportance of
disability access. I think,
to some extent, this is grounded in my perspective, in my
individual perspective, but I think it ultimately goes beyond that.
When we're asking the question about what access is like within a university setting,
I think that we… that it's also important to think about
the cost of living crisis more generally, both for students,
for students, staff, and faculty,
within the university, which of course tracks the cost of living outside the university.
I don't think that the two worlds are separate.
And, more specifically, in terms of accessibility,
what are the constraints that contingent faculty, for example, or graduate students, or anybody,
employed in precarious work,
low-wage work, or having to work multiple jobs.
How do their, our experiences navigating access, and trying to secure access
with limited resources, limited time, limited energy,
ultimately highlight the extreme economic inequality in which struggles over access take place.
And that's the end of my thought.
[Diane:] Yeah, that's very interesting, because when you're…
it's such a complex environment, sometimes academia.
And so, if you think of… all these… and also it depends, so you're in lecturer,
and then Elizabeth and Andrew have other positions.
I think you… we all, uh… have so many things to integrate to make sure that
these students and ourselves are safe and work in a good environment.
So I want to ask the same question to Andrew.
[Andrew:] Yeah, so I really appreciate Stefan's perspective, because,
I don't think I fully described myself earlier, so I am a middle-aged white man wearing glasses, gray hair.
Today I'm wearing a white polo shirt.
And so my position is much more stable. I am a full professor at a university, in the School of Music at a U.S. University.
What I would say about access, now from a teaching and student perspective.
is that… I'm sure in Canada the situation is somewhat different, because the laws are somewhat different.
But the United States, with the American Disabilities Act, there is nominally the idea that
reasonable accommodations should be offered to anybody in a particular situation.
And so those who are employed, you all know that it is the employer who defines reasonable.
And in an academic environment, it is ultimately the instructor
who has that opportunity to do so, and can say, well,
in order to succeed in my class, you need to be able to do X, Y, and Z.
If your body-mind is not capable of doing that, then tough, right? You don't belong in my class.
Most people aren't quite that brutal about it, but, in the end, music programs,
performance programs in general, by and large, are dependent on hyperability.
In fact, on the… on individuals damaging themselves in the course of
working so hard that they burn out and harm themselves.
I hope none of the musicians on this panel have experience this personally,
but I know many musicians who have, regardless of their identity.
And so, the question of access to musical training
is one that is really difficult for many of us to manage. So, I'm a historian, I teach classes that are about music and culture. It is…
I've been interested in the Universal Design for Learning for a while, and similar kinds of access matters, and I'm
committed to being radical in the access that I provide to students,
and I don't want to go into it, but that's something that I think about a lot, and
I'm able, I think, to bring along many of my fellow academic colleagues
in that way of thinking. But for the performance colleagues, the idea that somebody who's studying an instrument
could be understood if studying it properly, if the technique is non-standard,
if their body needs a particular version of an instrument that's modified,
if they're blind, and therefore they need a different way of accessing certain kinds of training.
You know, we have very few disabled students
and, you know, the argument is always, well, we don't need to spend all that money, so back to Stefan's point.
We don't need to spend all the money for access because we don't have any students.
Well, guess why you don't have all the students? Because
the word gets around that it is not accessible to study in that place. So,
connecting, then, this idea that I think Stefan puts very well about the precarity of many people in the system,
even for those of us who are privileged, blessed,
whatever adjective you want to use to have, you know, to be able to do
good work, and we hope work for greater access. The premises of access in academia,
where you need to be excellent according to certain criteria that are non…
You know, non-negotiable and also arbitrary, created by, you know, white, non-disabled men, right?
I mean, as we've… as people legitimately discussed. So,
this is something that I find really very important as well, is
how we think of access for younger people into the discipline.
And I'm really delighted that RAMPD now is there as something to point to, to say, okay,
we're going to do a… I'm going to do my best to help you get through this program, which doesn't give you access.
And there are mentors who have managed to make it despite the fact
that training and opportunities were limited,
and now there are people who can model what it means to be a successful disabled musician.
So, I guess I'll leave that there.
[Diane:] Elizabeth.
[Elizabeth:] Thank you so much. I… I look up to both Stefan and Andrew a great deal.
So it's absolutely wonderful to be able to follow both of you answering this question, because
you've laid the groundwork really beautifully.
I say groundwork, but that's really a very deep analysis with also, like, practical tips.
And kind of going back to what… I want to also echo what Stefan said, like Andrew did, I mean.
At the end of the day, budgets are expressions of priorities.
If you don't have enough money for access, and you're refusing to get creative about how you pursue access,
you do not value us as human beings.
That's it. And I know you can be nice, and you can smile, and you can wish me happy birthday,
and you can remember my cat's name, and all these lovely things.
But that doesn't take away from the fact that if you are refusing to provide basic access,
if you're refusing to prioritize that, you are dehumanizing me and my community.
For better or worse, I tend to take the dehumanizing my community one a bit harder than me personally, but…
Hey, musicians were trained to have thick skins, aren't we?
For better or worse.
Budgets, when I say they're expressions of priority,
this concept of priority and values is something that
I think is going to apply within academia and without.
But when you're talking about access,
academia, classical music, a lot of these spaces I've inhabited are terribly… conservative institutions,
in the sense of they've been around for a long time, they do not like change, they like tradition.
The idea that universities and academia are these ultra-progressive spaces
is very bizarre propaganda that came out of the Vietnam protests in the United States.
I just want to be… clear about this, they are very conservative, old institutions
who like doing things the way that they have done.
So when we ask for access, we're asking them to change.
We're asking them to abandon a lot of the eugenics-based principles
that Jay Dolmage points out in "Academic Ableism" undergird
the ridiculous number of steps that it takes to physically get into the university.
They also undergird a lot of the conversations around which bodies should and shouldn't be acting.
Which voices should and shouldn't be heard on stage,
which techniques should and should not be allowed on an instrument, or whatever your discipline is.
So, fundamentally, when you're hitting up against an access issue, you need to stop and evaluate.
What are my actual values? What are my actual priorities in this experience?
Where can I be creative? How can I work with other people to highlight those?
My team, we named our group Open the Gates Gaming because we felt like all of us
had been able to sneak into these highly gatekept areas of academia,
tabletop role-playing games, and now that we're in there,
we want to kick open the gates from the, you know, from the inside. We're kicking them out in this case.
To try to let more people in, and I'm so deeply honored to be part of this project that you've been building, Diane,
to get so many of these folks who have very, very similar values to it. And I think, at the end of the day,
for us, for those of us who are in this access work, and those of us who are impacted by the lack of accessibility,
the way that they hold us back is by making us afraid,
and making us feel alone, and making us feel like we don't belong.
They do that by not paying us enough to survive. They do that by
working us until we're about ready to collapse from exhaustion just trying to advocate for our own support needs.
If I hear one more time that students need to be self-advocates for their legally given rights,
I'm gonna lose it on someone, but that's okay, it wouldn't be the first time.
But they do this also through hiring practices. Um.
I don't want to put anyone on the spot, but some of the people that I most deeply admire in my field, in musicology,
people that are working on music and disability and incredibly innovative stuff,
who are getting book contracts and doing amazing work,
cannot secure full-time, like, employment in academia because it is ableist.
Because the hiring practices are ableist.
And to pull back to something that Emily said,
I'm so grateful for you for sharing this idea that sexual assault, sexual harassment, that this is an access issue.
Right? Because this is also intersecting with gender, it's intersecting…
intersecting with sexual orientation, with with race, but all of these together are the access issues that we're having to dominate.
And as long as they keep us afraid, as long as we're too scared to challenge hiring processes or
promotion and tenure, or audition guidelines. They make us feel like we don't belong.
Those are the things we actually have to go after. And we also have to
lift each other up in a system that isn't just capitalism.
They're not paying us what we're worth. So let's remind each other every day what we're worth.
We can build things. We have more power than we think we have.
So, for whatever I can add to this conversation,
I think whether it's academia, whether it's, you know, music broadly, the arts
more broadly, we're a lot stronger together, and every time we choose not to be afraid,
and we choose to love ourselves, and love each other, and honor the ways we can show up,
and give each other grace for the ways we can't,
this idea of access, it's really not so scary.
As Robin was saying, a lot of times it's actually free.
A lot of times it's a mindset and it's a willingness, and it's
doing what the ancestors and elders in disability justice have taught us, and moving together.
So, yeah.
[Diane:] Well, yes! Yes to everything!
I mean, we are here as a great community, right? We are here, like, all working together
and trying to build a better world together, so I'm thankful for all of you!
Really, like, all of you who are here today.
Thank you. I have a question for…
We all, since the pandemic, we all use
a lot of digital tools also, and we all use tools that now digitally has opened some possibilities.
And I have a question for those who tend to work with these tools on computer, like the digital
platforms, and also the production side, and this would be
a question for Malicious Sheep and for Kemal.
So, both of you, you mainly use digital tools, like, for the production side of your work.
and also the final products that you produce.
At the final product, you will have some contents that needs to be
accessible, and that needs to be shared in these either digital exhibition or movies, or whatever you're doing.
And I wanted to know how your access needs are met when you're working in these digital tools.
And I want to start with Malicious Sheep.
[Malicious Sheep:] Yeah, sure. A lot of what I have been working with,
as a lot of my health issues have progressed, I've switched to photography.
and my photographs are not digitally altered at all, they're not staged or artificially lit,
or go under any sort of post-production. So within that realm,
within my art practice, it's not much affected.
But the ways in which that I can access community and to share my work is deeply technical,
where I am an immunodeficient person.
I have been in permanent lockdown for 5 years, and that will go on for the rest of my life.
And the way in which I am able to engage with community, and for the first time ever
with an art community is through an ecosystem,
a blockchain ecosystem called Tezos, particularly through Teia.
I am a co-founder of this, one of 20 global community volunteers who,
through open-source software, have created a digital art marketplace.
And so, a lot of what we do there is create avenues for different types of files to be
crafted into something that is transactable,
and to provide space for, like, creative coding. So many various mediums are available within Teia.
And a lot of what we do there, because everybody who works at Teia,
20 core members, where all volunteer artists as well, globally.
So we do a lot of,
you know, troubleshooting and education and assist with all of the tech needs of everyone.
One of the things that I'm super proud of as a disability justice advocate, can't help myself,
when I got there, I was like, listen, the site is not accessible. We need to work on this.
I know it's open source, I know we're all community volunteers here.
You know, we're doing this part-time, but let's focus on this as a priority, and thankfully, the team was
happy to do so. They were unaware that it was inaccessible.
And once I explained it to them, they're like, oh, we need to solve this, like, tomorrow. Let's work on this. So,
it's been great to, and within that, and within metaverse spaces in the ecosystem,
all of the devs are really happy to put that work in.
I, myself, am trying to train as one so that I can do a lot of this work too, because it is
you know, we're building everything from scratch within this community, which is really fun.
One of the features that we implemented a couple years ago, and we're
working currently on screen reader capability. It is a work in progress, because
our code is a hot mess in the back end.
It's getting tidier with time. But we have two elements.
Any new user who goes to Teia, which is teia.art,
if they have not signed in with their wallet yet, then they see the site in an accessible way, which
blurs any not-safe-for-work material, as well as any photosensitive material. And once users are able to
sign-in, then they are able to select that within their settings to disengage that if they choose to view it.
So, not safe for work is specifically for nudity or violence, for folks who have PTSD or complex PTSD.
And for photosensitive folks,
any moving, undulating, flashing GIFs or videos,
anything like that, for folks who have vertigo or migraine, or epilepsy,
so that the experience of the art community members is a safe one.
And we want to make sure that everybody is...
Even if they're just accessing it for the first time, we're not putting them in a position of potential crisis.
So doing that work is really important.
I know, to the team members there, which has been great, and as community organizer there, I love that.
I also do a lot of
curation and hosting within that ecosystem of over 10,000 artists globally.
And so, a lot of... When I am hosting and designing events and things,
I'm making sure to provide materials in as accessible a way as possible, hosting events.
I serve as a reader for those who are non-speaking or phased-speaking
or require a reader for any other reason.
We do active translation, either live or through our documentation,
as best as we can with volunteer power, so…
And Teia being a non-profit, Dow LLC, which is volunteer-powered and community-owned.
I think it's core to our values, so…
But having access to that community has been beautiful for me. I've grown substantially as a person.
And now taking on a leadership role within that community has been very beautiful, so…
Yeah.
[Diane:] Thanks. It's a lot! It's great.
Kemal, what about you? You are… can you also tell us a little bit of what you do?
[Kemal:] Yes, thanks, Diane. Actually, when it comes to work in business-to-business area,
so you are the one who is supposed to be finding the solutions, rather than asking for solutions.
And when it comes to access needs,
from a media composition perspective, there are its own advantages and disadvantages.
First, you have your own studio, so you can calibrate it, fine-tune it, as the way you want.
But when it comes to working for a production team, a production company working with a director,
it's a difference… difference, sorry. Because at the same time, you're… you're working for a client, and your job is creating solutions for that client, so… And at the same time, you may need your accessibility needs, but When it comes to that, you can… you can always…
at the same time, you're working for a client, and your job is creating solutions for that client, so…
And at the same time, you may need your accessibility needs, but
when it comes to that, you can always
ask questions, or give some guidelines or directions.
But it really depends on the, on the project, really depends on the team, the company you're working with.
But it may come down to this. You have to… you already…
declared, so acknowledged that you are a professional. So, if you're a professional,
You're supposed to be the one, you have to find your own solutions, and since we all here in this room, we are all…
There's no rulebook, there's no handbook to make everything accessible,
to redesign the work from scratch and make it good for all of us.
Because nobody, nobody, uh, spent any time to think that before, but now we,
as the members of the disability community, we are greatly forcing
the world to rethink, reconsider their decisions and their mental processes, their mindsets.
So, that makes us… That particular mindset, that particular movement makes us one of the frontiers
in this matter. So, which means there's no considered, retried, examined,
correct way to go. When it comes to… when we're talking about the media industry,
this situation is a lot more tricky, because the media industry can be really conservative, in a way.
It shouldn't be that way, because, you know, the media
should be the industry, should be the inventive one, because, you know, the media includes
video games to all the way to the streaming platforms, and go much on TV Networks, social platforms like YouTube and,
and such. But from a business perspective, that can be really conservative, so you have to find your way,
and you have to open doors for yourself, for the other fellow disabled professionals in different,
working in different areas. It can be a… it can be video editing, through the media composition, through the cinematography, and other stuff.
But being an inventor, since all of us, all of our natural quality,
it can be done easily. Maybe not easily, but it can be done anyway. And, yes, it requires a lot of work.
But since it's a natural quality for all of us, it's not that hard for us, actually.
Not actually as hard as a regular… another person who doesn't carry that quality naturally.
But I can share a story about that. Most recently,
not most recently, but a couple of months ago, I got hired by a… by a cinema base director
for scoring an Arthouse short movie about disability culture and
how medical practitioners and medical professionals treat the disabled individuals, disabled persons.
The thing is, the movie was originally created as a silent movie, then they created an audio description.
And the director required a score for the audio description.
And I was like, okay, then I can… then I will score music for the audio description.
And that was right, but the director informed me that she also wants to combine everything after I finish score the movie.
And I requested to see the picture, so I can make a better job.
Sync the picture with score, but, uh, she asked me to do this without seeing the picture because,
first, she wanted to prioritize audiences without sight, blind and visually impaired,
and second, she wants to… She wants to experiment a concept if a
blind composer can score music for a motion picture project without seeing the picture, obviously,
and whether or not that score still can serve to the picture.
And it turns out it did. Without any timecode.
Without anything, just with the audio description, the music served to the picture really well.
So, and now we understand that, thanks to this project,
now we understand that if the production companies can…
can put the audio description into the core production budget,
a blind composer can perfectly score a music
for that particular motion picture project, with the audio description,
and maybe with some important timecode information.
With that, a blind composer can score something, will perfectly work,
work perfectly with the picture, and it opens a new… millions of possibilities
for the media industry, for the audiences, for the creators,
and for the composers who are blind or visually impaired. So,
in this regard, I can easily argue that
if you're just finding our ways with innovating, inventing, experimenting, trying stuff,
and writing the handbook of accessibility, working in the digital era, and
digital world and working for the media industry.
[Diane:] Very good point. Yeah, I love the… it's a good point that,
with the proper adaptation, well, we can do anything, right?
It's just a matter of figuring how, and with what tools and what medium.
[Kemal:] Yeah, it's just accommodation matter. because, you know, when we look at that, okay, we need… we need some some stuff because… Uh, of our conditions.
Because, you know, when we look at that, okay, we need…
we need some some stuff because of our conditions.
It's not that accurate. It's not quite accurate.
We need accommodations, just like every living thing needs in this really big universe,
and on the face of the Earth, obviously. And the accommodations must be fulfilled.
The only issue is here, I think, the only important issue is here.
Sometimes, maybe most of the times, we just don't know that accommodations, because we…
We haven't had the chance to work on that before. Now, since we have, if we have,
we can set that accommodations correctly and accurately.
And the problem, the issue about the mindset you know, that's the issue about the mindset.
Everybody experiences it all the time.
It's not limited with the disability culture.
But it's really harsh on the disability culture. So,
we need to work on that as well. Even though it's not our fault, or it's not… but we are the architects.
So, if you want to build the future, yes, we also have to work
on the mindset, the other people's… the other's mindset. That's the thing.
[Diane:] Yeah. Well, thank you. Um, that's… yeah, that's a great answer. I really like that.
I'm conscious of the time, and we are almost at the end of our conversation. I want to know if…
to open the floor to our guests today, and attendents, people in attendance.
Does anyone have a question for one of our guests? We have only a few minutes, unfortunately.
[Kemal:] Oh, Diane, I have one… not one question, but I… at the very first… at the very beginning of the streaming, Elizabeth
just told that she is running a tabletop RPG, and I'm just begging her to give me more information about that.
[Elizabeth:] Yeah, so, we have a website, it's OpenTheGatesGaming.org.
And we… it started with our local disability community during the real height of the pandemic,
wanting to play Dungeons & Dragons with other people, because that was getting really popular.
But it's not super accessible. So, we were developing tools so that they could play
with everyone else. So we don't change the rules, they can just take our tools and play at any table anywhere.
But then it's also expanding into making sure that the stories we're telling and the adventures that we're telling…
that, you know, that are happening and unfolding are allowing people to explore any part of their identity.
So things set in Mesoamerica,
we've got, like, a Mesoamerican campaign setting in development that is,
like, if the… if colonialists didn't win, right? Um, but it's also a little magical, so it's a little Wakanda feeling.
And there's a project where we're taking operas, and you get to play Dungeons & Dragons inside of an opera,
and push back against,
and really experience the consequences of sexism and ableism and settler colonialism and racism, like,
in these operas. So we have Tosca, Alcina.
Um, oh my goodness, uh… Poor Chris Campo-Bowen is gonna be on my case.
We're actually, next month, gonna be streaming "The Invisible Island of Kitezh"
with some celebrities. So, I'll make sure Diane gets that information, but…
[Diane:] I think what we will do is to publish all the resources that we discussed, like a regular episode, right?
A lot of things were shared that are really important, so I will publish a a resource page with everything, so that we know...
Okay, Carly, I see your hand is up.
[Carly:] This is sort of a general one for the whole group, is sort of…
how do you overcome some… when you're on, like,
say, for instance, social assistance in that, having to deal with some systems that can be…
from stone tablet style to quill and parchment.
in modern versions?
To encourage them to sort of upgrade to more modern, I mean.
[Diane:] Emily?
[Emily:] Yeah, I'll jump in here. Something that I think is important for us to keep in mind is that
a lot of these systems are working exactly as they were designed to.
Which means that they are intentionally creating more barriers for us to get the access and the support that we need.
And that, you know, there are people within the system that want to help change it.
So, this is… this is kind of one of the things I call using, you know, using my Karen powers for good.
Where, you know, you just, you bring that energy to finding legal ways to complain or circumvent.
Things that are giving you barriers to access.
So, you know, if it's, you know, is there something that's, like,
human rights adjacent, where you can complain if you're not getting the support you need.
You know, can you complain, like, AODA if you're in the States, in terms of accessibility needs,
things like that, where… Sometimes you have to be the squeaky wheel to get the attention in terms of…
Pun not intended, but yeah, like…
It's basically, if you can learn to use their own language and their own systems against them,
when they're intentionally putting barriers in your way, like,
cite the laws back to them, figure out what laws or what… what ombudsperson, organizations, what other places, like.
You know, if you can go around them to a group that has higher… Or, like, an organization that has, kind of, jurisdiction over them?
Being able to do that as much as possible, but it's…
But again, too, it's like, remember that they're putting these barriers in place so that
we will get tired, we will give up on advocating for ourselves.
So, sometimes a little spite and a little resilience goes a long way, too, I will say, where…
you know, if you're gonna make things difficult for me, I will make things just as difficult for you.
And, like, and also having that self-assurance, that self-confidence to say, you know.
Yes, I need this. Yes, I'm going to advocate for myself.
And the more that you throw at me, the more I'm gonna put right back at you, because I deserve to have
the same chance to thrive that those with more privilege do.
So, being able to be your own cheerleader. While also navigating the systems goes a long way as well.
[Diane:] Are you all fine to stay a little bit more and chat a little bit more? Because I think we have a great question here.
Malicious Sheep, I saw your hand up when we were talking about that topic.
[Malicious Sheep:] Mm-hmm, yeah… I love what was covered
within, like, the institutional layer, but also within, like, materials layer for creatives,
depending on what medium is your speciality.
Getting creative with what you do have, and then seeking grants.
I know grants aren't always accessible if you're on supports, but seeking honorariums
is a way around that, especially in Canada.
So if you're able to access honorariums through programs for funding for materials or technology upgrades,
because one major thing, especially for digital artists, that they come across is technological cascades, especially if a lot of
the... your budget is already allocated for devices that require
technology, technological cascades can really impact, you know, either your quality of life or your access to community.
So if you're able to access honorariums or other programs which may be in your community where there are donations of
older devices, this is not just for artists, but there can be artists-specific ones.
But there's also ones for older devices as donations, or new devices as donations as well,
for seniors, you know, screen readers for folks who need that.
Yeah, all sorts of different types of technology. It is
mostly just seeking that out, but most folks don't know that that is a potential,
so I wanted to flag that as an avenue.
[Diane:] Thank you. Tekla.
[Tekla:] Thank you all for this wonderful conversation. I appreciate how a number of you mentioned that access needs
aren't only physical, they can also be emotional, social, psychological.
So my question is whether any of you have worked with performers who have anxiety disorders,
especially around performance anxiety.
And if you have that kind of experience, either with
working with performers who have those issues, or if you yourself have that kind of anxiety,
what sorts of accommodations have you found might be helpful
to accommodate disabling performance anxiety disorders,
so that those performers could still get on stage
and feel relatively comfortable, or get on stage and be visibly nervous,
but ways that you've facilitated that process for them?
[Diane:] Alex? Oh, sorry, yeah. Go ahead. Yes.
[Alex:] Me? Okay. It's Alex speaking, and I think I have…
I keep forgetting to say that I am blind. I have worked with many companies, both… well,
mostly, actually, in the UK, but, certainly, I'm hoping to implement this here.
Where we have created video. We've come up with an alternative character, so
let's just say, I'll just be specific. In "Mother Courage," we had an actor who
has exactly what you are speaking about.
And we created a character for her to be a journalist reporting
on what was happening to Mother Courage. So, if she had that kind of anxiety on that performance day,
or nights, then we flipped to the video version of their participation.
And when they were able to participate, we adjusted, we adapted to the live
performance. And, you know, just getting everybody, getting everybody on board,
like, right from the beginning, that is what… that is how we're working here.
This is a great… what a wonderful opportunity for all of us, and…
And I think if you… if you present these adaptations as creative opportunities,
that's… that's… you're halfway there. Because they are, you know? Actors like to stay fresh.
So, that was one technique, and it worked incredibly well.
So, I'm just sharing that. End of thought.
[Tekla:] That's so helpful! Thank you.
[Diane:] Go ahead, Tekla. Sorry.
[Tekla:] Oh, I was just thanking Alex for that very helpful reply.
[Alex:] You are welcome. It's just one, you know, it's just one adaptation, but I'm sure there are many more.
[Diane:] Before I gave the microphone to Alex, someone else, I cut someone else, and I wonder who it was? Someone wanted to reply.
someone else, I cut someone else, and I wonder who it was. Someone wanted to reply.
[Deshaymond:] Oh, it was me, it's Deshaymond. I just wanted to add that
I have extreme social anxiety and performance anxiety,
but I put it in my rider that I always need a quiet space.
Even if it's, like, in the basement of the venue or something, I always have…
I need at least 30 minutes before I go on stage to be very, very quiet and still,
just so everything around me, you know, calms down. You know, backstage can be
chaotic sometimes, and sometimes really loud, and all of that craziness.
So, how I manage and how I deal with it is
I automatically request what I need, and I take my candle down there,
and I do my meditation, and all of that stuff to get mentally prepared
to go out on stage and give a good performance. So, you know, it's definitely…
I advocate. I try to always advocate for myself. I don't… I try not to be a Devo
and say, I need, you know, only yellow M&Ms or something like that.
But I definitely require a few things to give a good show,
and quiet time and quiet space where I can kind of isolate a little bit
really helps to calm my social anxiety and performance anxiety.
[Diane:] Thank you. Mary, I saw your hands up, and I will
give the word to you soon, but I…
Rory, did you want to add something?
[Rory:] Yeah, thanks. I'll be brief.
I love the solutions that Alex and Deshaymond already presented.
I love the idea of having just an alternative backup plan
for the performance, and also a quiet space,
which is one of the things that our artists sometimes request of us.
We always ask… we always have an accessibility meeting with our artists
and ask them what their needs are.
And that's one of the most common requests, is just a quiet space.
But the other thing I wanted to say is that a comment that we get frequently from our artists,
and I can't say that they necessarily have anxiety disorders, but…
But many of our artists have just said that performing in an atmosphere where all expressions are welcome
and where the audience's access needs are being met and prioritized,
helps them to just relax into the moment, and realize what the purpose of the event is,
which is not to be on display as a perfect performer,
but to engage with the people in the room.
And that's been really magical to see in many, many contexts.
[Diane:] Yes. Absolutely, and we're… the most… the more…
It's very helpful to have a set where people are welcoming, and,
you know, and respectful, and everything.
Laura, did you want to add something?
[Laura:] Yes, thank you. Hi. Speaking as somebody who's done
a lot of work with people who have riders, including the green M&Ms one,
there's a reason for that.
And I think that actually it'd be a terrific way to start thinking about our access needs as riders in our contract.
The reason why performers will say things like, these green M&Ms
is because then they know that the microphones will work.
They know that the speakers will be appropriate.
They know that the stage will be set in the right way. So if they followed and paid attention
to the terms of the rider, they're safe.
That's, I think, what all of us are looking for.
And I've really experienced great things when people have been made to feel more welcome.
The quiet space also works really well for people with a variety of neurodivergencies.
So, these are… it's valuable across the board. End thought.
[Diane:] Mary, I will take your question.
I'm conscious of the time, and I don't want to spend hours and hours,
but I love this conversation, I would love to stay more, but yeah.
Mary, go ahead. Yes.
[Mary:] Mary, do you mean me?
[Diane:] Yes.
[Mary:] Hello, my name is Mary, Mary Kelly.
I'm perhaps coming at this from a different perspective.
I just discovered the ArtsAbly group yesterday through LinkedIn
where I'm very active. I think I'm probably older than most of you. I'm 73.
I did have a very active career in the performing arts, visual arts, etc.
Mostly behind the scene. I was a co-producer for a theatre company in Montreal.
I also had my own communications company. I did a lot of that.
At the Saidye Bronfman Centre, and any number of other,
and as well as in Toronto at the Royal Alex Theatre a number of years ago,
it's Centre Stage Magazine. So,I'm very grateful to be here and learn about all of you.
Your experiences, and those of you that have formed companies and groups, etc.
Love to connect with you through social media.
I've been housebound disabled, often bedridden, for the past 26 years.
So, like, I believe… one of the other persons this evening, spoke to the issue
that they're mostly have to deal with things virtually. I'm very grateful for social media.
I'm very active in terms of social determinants of health,
disability rights, just across the spectrum, most of the things that I post about through LinkedIn, Facebook,
X-Twitter, Bluesky… I'm not really active on Instagram, but I follow other people there.
All have to do with trying to make
our world a much better place for us all. It's sort of been a lifelong passion
of mine, a driving force, and… And certainly in terms of the arts, so I just want to thank you
all so much for what you're doing. And you can find me on any of those platforms,
either under my name, Mary C. Kelly, and my handle is at Astute Citizen,
or under my former company name, it's not active,
but May Communication, Mary Kelley Communication Services.
I'd love to keep, particularly those of you, well, in every realm.
where I can help to promote informally, because,
I am often veteran, so my reality is very constrained,
but if I know about you, including ArtsAbly, I shared that on LinkedIn,
then I'd love to do that, and just thank you so much for letting me be here,
I'm not going to be an active participant in the way that the rest of you are.
But, um, I've been doing my thing championing this in disability rights, and including even earlier today,
for at least the past 26 years, if not much longer than that. So, thank you.
[Diane:] Thank you for sharing. And, before giving the word to Elizabeth,
maybe Malicious Sheep, do you want to…
I know that some problematics are also yours.
But you just showed that, you know, so many things where possible
with, a community. And I wanted to give the… briefly the word back to you, Malicious Sheep.
What are your… When you are searching for the community to come to you,
what were your strategies? What… how did you start that, and where did you dig into that?
[Malicious Sheep:] Mm-hmm. I appreciate this question a lot.
So, while... A little bit of a backstory.
For 10 years, I was completely immobilized due to a series of cascading health issues.
And slowly re-emerged after a decade.
And just prior to COVID lockdowns, I started re-emergence. I started to look for a community.
I had been looking for community previously, but I found a lot of it to be inaccessible
or ableist, or otherwise prejudicial.
So it was really difficult to really find myself there.
And then any physical locations that I was able to access at the time.
I wasn't able to access. A lot of the spaces around me, regionally, are,
historical buildings, so not up to code.
And they did not have the budgets to upgrade, so I moved digitally, thankfully, with...
One of the benefits of lockdown was that everybody learned how to use Zoom,
and that's how I started to integrate,
after 10 years. And I spent some time exploring
accessible events. So there was an event for Pride, which was an accessible Pride event that was done virtually, which I attended,
as well as a… accessible curation, which both were done through Zoom.
Those were fabulous. And then I came across a community called Creative Connector.
I recommend that for anybody. That is how I found ArtsAbly.
It's a community network that is powered by disabled community members.
It is all across Canada, but they are expanding.
They are wonderful. You can make yourself a little profile.
And I've had a couple opportunities through that, which has been great.
But then, accessing the blockchain community, which I mentioned earlier, Tezos,
I came across it through a music community, the…
you know, the musician, at the time was exploring it,
and I ended up being in there, and now I'm, like, a leader in that community. So, it's been very fun.
And it really is, like, the first time that I've actually felt,
like, community support. I was always,
like, in my previous experiences, like, I even served before I got really sick, I served as a curator in Toronto for a year,
but even in the spaces that I could access before my health dissolved,
devolved, rather, um… I was treated like an imposition, and not as a person.
And that only got worse with time, until I had digital access. And because I have been locked down,
and will be for the rest of my life. I have one of the rarest
immunodeficiencies on record. It's me and one other person
who has since passed. So
my entire social existence is digital, and so because of that,
and that inaccess that I've faced elsewhere, I aim to build spaces
in which that doesn't occur. So removing lateral structures,
or removing hierarchical structures, rather, and moving to lateral structures,
for organization. And decentralized
community-driven mutual aid groups and grassroots supports in education.
So that's definitely a priority for me, because I have seen it work,
and have felt the impact of institutions who… their aim is to preserve.
They do not want to move forward actively. They need to be shown that it can be done easily, cheaply,
and that they will not be punished for those transgressions
in order to actually adopt things often. So…
I'm trying my best to provide a space in which I can provide that evidence
in a new way, with folks who are... I consider my family within the ecosystem. We're all
a wonderful, happy, global family of artists and developers,
and so we want to support one another.
and removing barriers in a way that an institution doesn't want to, so…
I hope that covers it. I think it does, but yeah.
[Diane:] Yes, thank you. Jessica, I saw your hand. I will come back to you.
But before, Elizabeth, do you want to add something?
[Elizabeth:] Oh, only that… I just wanted to affirm that…
and I'm not going to do as good a job with this as Malicious Sheep just did, that's wonderful
how you put it, but for Mary, like, online organizing is organizing.
Online community is community. The work that you're doing is incredibly important.
Amplifying other people's voices is very important.
What both of you were saying brought to mind someone else's work,
Dom Evans, who is a filmmaker, and directed an award-winning music video
for James Ian, another RAMPD member, a couple of years ago, and Dom directed the entire thing
from bed in Michigan. And it was filmed across the country.
Dom does amazing, amazing work.
and is one of those examples of once you let go of the old rules and you really prioritize access,
some cool, creative things can happen, so I just wanted to make sure I lifted up Dom's work.
But thank you both.
[Diane:] Thank you. Jessica, do you want to ask your question?
[Jessica:] Hi. Yeah. I wanted to ask...
I should have to get my words. How is… how do we find…
I know there's a lot of people here from, like, music academia.
How do you find that academia is changing music education?
And I kind of wanted to specifically ask as well,
like, are people taking a more multidisciplinary approach,
to music education and in, like, the academia spheres?
[Diane:] Who wants to take that?
[Elizabeth:] I'm wondering… I'm waiting for Andrew to take it.
[Diane:] Yes. Andrew, are you still here?
[Andrew:] Yes, hold on, yes.
[Elizabeth:] I'm so sorry, Andrew. I could have just vamped for a minute.
[Andrew:] Exactly, you're the best vamper.
So, what I'll say is, maybe
kind of, I think it depends on what you mean by music education. My sense is that
the field of music education, choir music education, K-12 education.
is still working on very special education kinds of frameworks, for the most part.
I know there are people out there, but I...
Because that's not my playground, I don't know… to who...
I mean, there's Elizabeth, right there.
You know, she's drinking right now, but, I mean, there are…
a handful of people.
[Elizabeth:] It is tea, okay? The way you said that. Some people are not gonna see the tea mug.
[Andrew:] No, no, I'm sorry. No, um, it's tricky, because structurally, academia is still
impossible, because it's so conservative, again.
Malicious Sheep put it, as Elizabeth said,
better than any… I can ever put it.
So the structure of the academia is still a really dangerous place for anybody.
It is possible to find mentors who will make things less troubling,
and there are people who make it through these networks of mentorship.
And get breaks sometimes, and some people don't get breaks. I mean, again,
Elizabeth was saying earlier, we have a number of really extraordinary scholars in higher education music who
have been left out, who have been purposefully boxed out specifically because of the ableism and structure.
And we have a few rising scholars who are kicking ass in intersectional way,
and ain't gonna be stopped by it because they've found the right kinds of trajectories.
So, what I would say is, is it better than 10 years ago? Absolutely.
Is it straightforward? No. But I know
I am always ready to talk to people about what the least worst paths might be,
and I know Elizabeth is,
with the reality that it's a gamble, because academia is a terrible place.
I mean, I hate to put it that way, but… it kind of is...
[Elizabeth:] There's something you told me years ago,
which is that, like, you've got to be really clear that you're not letting
any of this defined your self-worth and how you understand yourself as a person,
because it's already built
to tear you down. And that idea of being more flexible and multidisciplinary is key.
I mean, if there's one thing people with disabilities can do better than anyone else,
it's creative problem solving and pivoting and adapting, and that's what you have to do to succeed
in these careers, too. I mean. I have no idea
why I have a research project with Dungeons & Dragons. I mean, I am a nerd, but that's...
I didn't even play D&D that long ago.
It's... If you're pivoting there, great people help there
But it is tricky, and that idea of being flexible multidisciplinary is very important.
[Andrew:] This is Andrew again, I'll jump in very briefly to say,
there are more people and it's worth finding them, or finding the networks.
And some of them are within systems that are themselves problematic.
But that doesn't mean that we need to give up on the system. I'm a systems kind of guy.
So, I mean, opposite to, or maybe not opposite to, but complementary to Malicious Sheep,
whose work I find just stunningly awesome, and I'm gonna have to track down everything that you're doing,
I am where I am, I've gotten to where I am, and so it's similar to Elizabeth's whole point about you open the gates from the inside.
But getting people inside the gates, and then… and then it is a boss battle. Right?
So the boss battles are still there. But we need people to help us with the boss battles.
And some of us are really eager to build those communities. So,
yeah, I mean, it's great to have everybody here. I've been so awed by everyone here, frankly.
Such a badass team here. Anyway, I'll shut up now.
[Diane:] I'm sorry, I know you all want to react, but um… I will have to wrap up, because it's been almost 2 hours, and I guess we need the 2 hours!
[Diane:] I'm sorry, I know you all want to react, but I will have to wrap up, because it's been almost 2 hours,
and I guess we need the 2 hours!
For the next live episode, episode 100, right? We will have a live.
So, I will give you a little conclusive words, and then,
I just wanted to thank everyone for being here today.
I... For those in attendance, thank you for staying.
and being there, chatting and conversing.
And, ah, I wish we had that more frequently, and I… it will…
it makes me think now.
So, as a brief conclusive chat,
support your communities of artists and art professionals with disabilities around you, right?
We need to have more access to performing and educational spaces and have these conversations.
As you heard tonight, we need advocates and supporters, so,
you know, listen, go and check the work...
I will, we will publish this resource page on ArtsAbly's website.
We will, like, connect with these people. I will publish
the profile for all the people who participated tonight.
So, yeah, I hope you enjoyed this conversation today.
It will be published as a special episode number 50,
as an usual podcast episode, and also the YouTube video.
And… yeah, thank you all, everybody, thank you, and enjoy the rest of your day or night!
And, uh, yeah, talk soon, everyone. Thank you.
[Alex:] Thank you, Diane. Thanks, everyone.
[Multiple speakers:] Thanks, Diane. Bye, everyone.
[Andrew:] Thank you Diane, thank you everybody, it's been a joy.
♪ Closing theme music ♪