November 29, 2024 • 45 mins
In this episode, ArtsAbly is in conversation with Elizabeth McLain, Assistant Professor of Musicology and Director of Disability Studies at Virginia Tech.
During the interview, Elizabeth McLain mentions a certain number of resources that are listed on ArtsAbly’s website, in the Blog section. Access Elizabeth McLain’s resources
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(00:01):
♪ Opening theme music ♪
Hello, and welcome to this episodeof ArtsAbly in Conversation.
My name is Diane Kolin.
This series presents artists, academics,and project leaders who dedicate their
(00:26):
time and energy to a better accessibilityfor people with disabilities in the arts.
You can find more of these conversationson our website, artsably.com,
which is spelled A-R-T-S-A-B-L-Y dot com.
♪ Theme music ♪
(00:55):
Today, ArtsAbly is in conversation withElizabeth McLain, an assistant professor
of Musicology and Directorof Disability Studies at Virginia Tech.
You can find the resources mentioned byElizabeth McLain during this episode
on ArtsAbly's website in the blog section.
(01:15):
Welcome to this new episodeof ArtsAbly in Conversation.
Today, I am with Elizabeth McLain, who is Assistant Professor
of Musicology and Directorof Disability Studies at Virginia Tech.
Welcome, Elizabeth.
Thanks.Thank you for having me.
Thank you for taking the timein your busy schedule.
I know you are very, very busy.
(01:36):
Yeah, thanks for working around that.
I really need to work on my schedule.
It's a bit much.
I always like to knowa little bit more about my guests.
I wanted to know a bitabout your background, who you are,
what made you start in music,things like that,
How I got started in music.
(01:57):
I grew up in a familywhere music was very important,
but it wasn't anyone's day job.
So all of my family members played brassinstruments, and they did it just for fun,
but I was the first one to wantto go to music school and pursue that.
I was working on a degreein trumpet performance
when more of my disabilities manifested.
(02:20):
I'm autistic, but didn't reallyget a formal diagnosis until my 20s.
I also have Ehlers-Danlos syndrome, whichcauses all of my joints to dislocate
when they want to, among other fun things.
When I was in undergrad,
I think my second into my third year,
(02:43):
my ribs started dislocatingwhile I was playing trumpet, especially
when I was playing piccolo trumpet,which requires just a lot more force.
It was very confusing for doctors.
They didn't immediately catch that that'swhat was happening, and it still took,
I mean, almost another decadeto know why it was happening.
In fact, if I hadn't gotten the autismdiagnosis, I don't know
if I would have gotten the diagnosisfor Ehlers-Danlos syndromes.
(03:06):
And these two thingsseem to both correlate with each other.
If you have one, you'remore likely to have the other,
but also the other way around.
So on top of just asthma and other thingsthat were putting pressure
on my lungs and on my rib cage, very clearly this became
not a viable career path, let me put it that way.
(03:27):
I explored orchestral conductingfor a while, which I liked
and I think I was pretty good at.
But after going on some auditions,I realized that the path
to get there was just odd.
It was very much based on personalcharisma, and there's a lot
of obstacles to navigate.
I was used to the sexismfrom being a trumpet player
(03:50):
where women are still a minority.
But it really did not seem likea viable path in terms of,
Oh, if I put the work into it, I will end upbeing able to make a living off of it.
It was a lot more confusing than that, andespecially with my health falling apart,
I didn't know if I could count on it.
I met a professor, his nameis Michael Saffle,
(04:13):
at Virginia Tech, where I did my undergrad.
And he just needed a research assistantto work on a book about Liszt
and some letters between Liszt and D'Agoult.
And I could step in and help withmy background in French.
And that's when I learnedthat I was musicologist.
It just seemed to fit.
A lot of the skills that I had, whetherit was learning different languages or
(04:36):
I had been also working on a bachelor'sin history the whole way along
and things like that, everything fell into place.
So then I did my graduate workat the University of Michigan,
where as I acquired more of mobilitydisability side to my chronic health
disabilities and really got the namefor why my brain was so different and why
(04:58):
I was struggling,got that autism diagnosis
I became involved in disability organizingfirst at the local level,
things that needed to get doneat the University of Michigan,
and bringing the knowledge I hadand the knowledge I was gaining every day
to the the Schoolof Music, Theater and Dance.
(05:19):
I don't want to forget Theater and Dancejust because I'm not talented in either.
But the School of Music, Theaterand Dance at the University of Michigan,
Musicology Department.
It was a gradual thing.
I was doing a lot more on theactivism side than getting into pedagogy.
It took many years before I realized thatdisability was infiltrating my research.
(05:43):
I came to Virginia Tech in 2019to be an instructor full-time
while I was finishing up my dissertation.
That timing will probably bring a lot ofbells for folks because then the pandemic
hit and everything became a lot trickier.
But I finished upand defended my dissertation
and graduated in August of 2022.
(06:06):
I defended my dissertation, I think
it was less than a week before I had major surgery
to have a spinal fusion, and I had to do allof my revisions and all of the submission
and paperwork and stuff in the first weekthat I was out of the hospital for that.
So it's a bit of a blur,but it's very nice to have it done.
(06:27):
I'm very grateful to Mark Clagueand everybody else at Michigan
that helped me cross the finish line.
So yeah, this year I started asmy new role, as you mentioned,
Assistant Professor of Musicologyin the School of Performing Arts
in the College of Architecture,Arts and Design here at Virginia Tech.
But then I'm also Director ofDisability Studies in the Academy of
Transdisciplinary Studies in the Collegeof Liberal Arts and Human Sciences.
(06:52):
That's a lot to say.
I did it without notes this time,so I'm very proud of myself.
Yeah, that's a bit of how Igot from where I was to here, I guess.
Yeah, and which explainsthe busy schedule.
Yes.
I'm straddling two colleges, twounits, two completely different lives.
Frankly, learning about disability studiesas I go, I didn't have access
(07:15):
to being able to take classesin disability studies.
And that's not unusual.
A lot of professors of disability studieshave to add this knowledge on
after they're done with their coursework.
So I do my best to read onechapter, one article in the realm
of disability studies, but alsodisability activism and arts and all
(07:36):
of that, disability culture every day.
And I fail a lot of times,but I do succeed a lot of times.
I'm hoping eventually - my lived experience is at one level, and I'm
hoping the academic knowledgeto talk about it, they'll meet soon.
That's my hope.
But you're also the co-chairof the Music and Disability Study Group
(07:58):
at the American Musicology Society?
I was until recently.
I did step down last year,which was a year early, and
that's why it looks like I still am.
I stepped on a year early because my co-chair, James Deaville, and I
had talked about the needfor the co-chairs to overlap
so that we don't lose two at the same time.
(08:19):
Because I had such a busy scheduleand so many research projects going,
I offered to be the one to step down first.
But I'm really proudof the work that we did there.
It was wonderful to be able tostep down and walk away and know that
everything I wanted for the group
was going to manifest with or without me.
(08:42):
We'd made several gains, but I could justsee the that we're on and I think
bringing new energy in has beenreally helpful in continuing that.
This group is really fantastic.
It's really a good group of people
who really are activists in their field,
try to make things happen, you including.
(09:05):
I'm really happy to have been ableto work with this group also and with
different people from this group.
I think you can be really proudof what you've accomplished in that.
Yeah, my big goals for the group,I love seeing that they're happening
even when I'm on the sidelines.
Making sure that we're collaboratingwith people from different fields,
(09:29):
centering the experience of disabledartists, which may sound like
a no-brainer, but when you're in thiswork, it's very common for stuff to slide
into music studies of disability.
We're talking about disabled composersor disabled performers performers
or whatever, but we're not reallyapplying a disability studies lens.
(09:49):
And a lot of times, maybe the peoplestudying it aren't themselves disabled
or aren't in communityor don't have that background.
And there's a lot of great workthat falls into that category
that I use every day, and I love.
It's fantastic work.
But I wanted to make sure we were growingthis segment of music studies
surrounding disability that really was bringingdisability studies to the table and
(10:12):
trying to find ways in which our academicwork could have a real-world impact.
So, yeah, it's been really coolto watch the group do that.
I go on record all the time,so I'm not afraid of doing it here,
that I'm very disappointedin the lack of access in our society,
in the American Musicological Society.
I think we've actuallytaken some steps backward
(10:33):
when it comes to access in recent years.
And that's the one thingthat I'm nervous about.
It's not the future of the group.
It's whether people like me can continue to be a part
of this society, whether this society will continue to serve us or let us serve them even,
or if one day we end up either needing to strike off on our own
(10:53):
or find another organization likethe Society for American Music or RAMPD
or something like that that wecan take this fantastic work to.
Yeah. And recently, there has been conversationabout someone we know that who is part
of a group and who had to step downfrom presenting because there were a lot
(11:15):
of access needs that were not met.
And so it's sad.
Especially when you see a smaller societylike the Society for Music Theory
offering a significant amountof their programming online, not just for
people who have gone through this onerousaccommodation process, but for everyone.
(11:36):
I love the curb-cut effect, and it'san example of that, where disabled people
needed to be able to access the societyremotely for presenting and for attending.
But doing that also benefited parentsof young children who couldn't travel,
people who are in employment situationswhere they're not getting any funding
for traveling or they can'tget their teaching covered.
(11:57):
It ends up helping a wide rangeof people, including people who are part
of our society but can no longertravel to the US with visa restrictions
or all sorts of things like that.
The fact that, again, a smaller societylike SMT has been able to accomplish it,
I feel like that should bean example for AMS.
Although when it comes to curb cuts, I'm…
(12:19):
This is completely off topic, butI'm having a lot of frustrating feelings.
When we're taping this, it isa week after the US election.
I was thinking about the fact thatwhen we talk about disability and access,
this idea of curb cuts as a metaphor, thefact that when you give disabled people
(12:41):
access, many people benefit from it.
Coming from when we've had to retrofitsidewalks to have that little cut
in the curb so you can go up there in a wheelchair,
well, that's also going to help people pushing around grocery carts
or strolers or just all sorts of folks.
The thing that makes me furious aboutcurb cuts is when disabled people fight
(13:03):
for them alone, and then they benefiteveryone, and then disabled people
have to fight to keep them because we'realways in danger of losing our access.
It's Anita Cameronwho reminds minds everyone.
You have to fight for your rightsand then fight to keep them.
You can't let off the pressure.
But then on top of that, there are timeswhen it feels like in the United States,
(13:28):
we're gearing up for a lot more fights.
We're gearing up to try to keep Medicaid.
We're gearing up to try to keep access to our health care,
a lot of things that have been threatened.
And it's been infuriatingto see people I know who benefited
from the work disabled activistsdid, from disability legislation.
I mean everything from caps on Insulinto the Americans with Disabilities Act
(13:50):
to infrastructure changes like curb cuts.
And not only are they not in the fightwith us, but they try to tell us
everything's going to be okaybecause they've never had to fight for
this thing that they take for granted.So I don't know.
When I think about curb cuts, I thinkabout the fact that that should produce
more solidarity with disabled people.
And instead, too often it'sinterpreted as, Okay, we can give you
(14:13):
this cookie because it will alsobenefit benefit other people.
I don't know if that makes sense.
Yeah, it makes sense.
Yeah, I've been perseverating on it a little bit.
But in a way, we are both partof an organization called the RAMPD
that you mentioned briefly, and RAMPD is doing
that work inside the music community.
(14:35):
I wanted to know a little bitabout your arrival to RAMPD
and your work with people in RAMPD.
Yeah, I came into RAMPD.
I was not in the founding cohort,but I think fairly quickly,
definitely within the first year.
(14:57):
It was Gaelynn Lea, who's oneof the cofounders of RAMPD, as you know,
who really encouraged me to join.
It's a little interesting.
Unlike you, I'm not currentlyperforming as a musician.
At first, I thought, Well,this isn't quite for me.
I'm happy to support it,but it's really only for artists.
(15:17):
It really hasn't been the case, though.
I've had the goodfortune at Virginia Tech.
My colleague Ashley Shew and I,and some other folks here
and at the University of North Carolina,Charlotte,
received a grantfrom the Mellon Foundation for what we're
calling a Disability Community TechnologyCenter that's really trying to bring
disability culture and artsand folks that talk about
(15:40):
disability justice to Appalachia.
Working with RAMPD,it's been fantastic to then be able
to connect with artists and start buildingthese residency programs, which
have been delayed significantly becausewe've lacked accessible infrastructure
when it comes to venues, especially.
We had to put things on holdand then try to get venue problems
(16:02):
fixed and raise funds for thatand then find alternate venues.
Now we're gearing back up.
But it's been really nice developing that project in partnership
with all of the folks at RAMPD who are doing this work.
I've been able to serve mostlyon the membership committee.
I think I was on PR for a hot minuteand then jumped over to membership
(16:25):
or engagement is what we call it.
But a lot of the stuff we're dealing with is membership, and then some of them planning.
I had the opportunity to speak tothe National Independent Venue Federation
a while back, I think almosta year ago now, about trying to improve
accessibility for their venues and waysthat you can do it, even on a low budget.
(16:45):
I was able to go to the White Housewith some folks from RAMPD.
There have been a lotof terrific opportunities.
So much of it is just community building.
I'm hoping that in the coming years,we can build up even more on the side
of people who are behind the line,
academics, industry professionals,
(17:06):
because I think right now there's a lotof burden on artists to run everything.
That can be really tricky becausethey have tour schedules and their lives
are just a little less predictablethan those of us who are fortunate
to have more or less a 9:00 to 5:00.
I'd like to get a lot moreof us represented there.
Yes. And there is a new musicologistalso right now who is also a performer,
(17:28):
but it's nice to see that We are moreand more to consider, Okay,
let's join that and try to work onthe connections and the community.
Absolutely.
I think a lot of folksend up feeling like they're alone.
We're also pushed to speak on things
as experts that we're not 100% experts in.
(17:50):
This is something I've only been thinkingabout a lot in the past year.
How often disabled folks go from diagnosisor realizing they're disabled
or identifying as disabled to having tospeak for the community and being treated
as an expert on accessibility.
And then all of the education you mightlack while you're trying to do that,
like you just kind of...
(18:10):
Now I'm thinking about the factthat there are a ton of us.
We can specialize.
We can share opportunities around.
We don't have to carry that alone becausethat pressure to be the ambassador
for disabled musicians or disability inthe arts or to say that,
Yes, I can solve all of your accessibility in the arts.
I mean, that's how questions,that's how we get burn out.
(18:34):
Whereas RAMPD is increasingly, I think, and I hope,
helping us see that no one of us has to be an expert on everything.
We can work together, we canmove together, where we can build
the world that we want to see together.
Yes.
Recently, Lachi has organizeda meeting to explain to pro members
(18:55):
what is the social model of disability,
what are - What is a possibility of
talking about people with disabilities?
What are things that wehear in our society all the time
and that bother us, but why?
(19:17):
It was a one-hour conversation.
She presented things and thenshe launched the conversation.
It was very nice to have thatbecause, one, it's important.
Two, some people who just joinedthe community and say, Okay, so I'm now
part of the big family of musiciansor performers with disabilities.
(19:42):
Now what?
Exactly. Just being disabled or being autisticdoesn't mean that you know anything.
I've been autistic my whole life.
It took me a long timeto really understand that.
But even after getting a diagnosis,it's like, Okay, Go on your way.
And of course, the person whodiagnosed me, it was a horrible process.
(20:06):
He just told me to goon the Autism Speaks website.
That was the only resource he gave me.
That was the only follow-up.
And I was moving to France for a research year.
To compound it further, I also ended up with an emergency surgery
in Roanoke, Virginia, when I was visiting my brother.
It was a nightmare time.
But I'm just in France by myself,trying to do my archival work
and function in a different language.
(20:28):
And...
Oh, yeah, you're also autistic.What on earth does that mean?
It wasn't until I came back from France,and I joined a support group that
I think it was supposed to be very muchled by someone at our counseling center
at the University of Michigan.
But the autistics justtook over every single week.
She was so sweet.She's wonderful.
(20:49):
She'd come in and she'd have a planagenda, and she'd distribute poker chips
that had a specific meaning.
So we had some nonverbal communication.
And then we would just dowhatever we wanted to do every week.
And she let us.
She did let us guide it.
So it turned more into,She has a plan if we don't have one,
and then we just took off.
But anyway, that's where I met a friendof mine named Luke Kudryashov, who's now
(21:11):
at the University of Minnesotaas an accessibility specialist.
And Luke really brought mein and helped me understand
how to survive as an autistic adultand what I was experiencing
and connect me with community.
I think when people are tryingto learn more about disability,
if you're on social media or you're looking at going to a presentation,
(21:33):
there are some questions you have to ask yourself.
All disabled people canspeak about their own experience.
That is true.
But the minute we go beyondour own experience, you do have
to wonder what our credentials are.
And it's not just professional training.
I could get a psychology degree, but that doesn't actually mean
(21:53):
that I know much about mentalhealth-related disabilities.
The thing that I'm really interested inis who is in community with other people?
Because either I'm speakingabout my autistic experience
or I am able to start pointingtowards, You should read this person.
This person says this.
This is how it's differentfrom what I hear to be autistic.
(22:13):
And there are some great peoplewho are Indigenous and autistic.
I learned so muchfrom them on social media.
Folks who are Black and autistic.
Autistic parents of autistic kidsare some of my favorites in the universe
because they just understand things muchmore holistically than the rest of us.
So yeah, checking out and seeing, is thisperson in community with other people?
(22:34):
Are they readingand referencing other stuff?
It's funny because in one sense...Okay, yeah.
Common sense.Of course, we know to do that.
But on the other, we almost never do.
It's really tricky.
But yeah, that being in community partof RAMPD is really important.
I think the fact that we're continuing to educate each other
(22:56):
and learn about these things, yeah, that can only help.
For sure.
Well, we talked a little bitabout that, but what is it for you,
what does it mean for you to be in anenvironment that promotes accessibility
in the arts or disability culture?
The most important thing for meis if disabled people are in charge.
(23:19):
I think I used to be a lotmore forgiving about this, but now
that is almost my bare minimum.
My armor is up, and I almostassume that I'm not going to be included.
If I see disabled people not justwith a seat at the table,
but a position of power.
Because a seat at the tablewithout power or agency is tokenism,
as Leah Lakshmi Piepzna-Samarasinhatells us, in care work.
(23:44):
I hope I didn't butcher that.
I love them, so I apologize if I did.
But that idea is definitely in there.
Accessibility for me is not just beingable to get into a space, it's being able
to have agency and power in that spaceand being able to transform it.
So are they advertising in advancewhat access they do have?
(24:05):
And are they providing a way foryou to ask about other access you need?
I think that's really important to me.
Disability culture is something that...
I have a class called Disability Cultureand the Arts that I teach every year.
It's very, very important to me.
When I say disability culture, it'simportant to know it's not a monolith.
You're trying to talk about an aggregateknowing that every individual within it
(24:28):
probably doesn't fit whatever definitionyou come up with, and that we have
subcultures based on types of disability,but also on how disability intersects with
things like race and gender, because
although ableism, and sexism, and racism, transphobia,
all of are interlockingand interdependent systems of oppression.
(24:48):
They all reinforce each other.
They all shape your experiences.
The way I experience ableism as a white autistic woman is going to be
different than a black trans autistic woman, for example.
But disability culture, to me,it's about the things that we care about.
(25:10):
It's about how we understand ourselves.
In some sense,it's the language that we use.
I think increasingly valuesassociated with disability justice
are playing a bigger and bigger rolein how we understand disability culture.
Not that everyone's informed on the topic,but a lot of things that are articulated
in the principles of disabilityjustice, like interdependence
(25:34):
and intersectionality.
A lot of these things come out ofthat culture that we've created.
It tends to be a culture thatprioritizes care and that understands
the value value of everyone, no matterwhat they can and can't contribute.
It's still a culture that's problematicand exclusionary because it exists
in the framework of other cultures.
(25:55):
But I think it's often at its best,
it's a space of trust where you don't feel any shame
for having needs and where people will help you get those needs met.
I think a lot about fictional characterswhen I teach my students, in part
because I don't want to call out realliving human beings if I don't have to.
(26:20):
I'm going to have to update my references,though, because they're already getting too old.
But I think about in Parks and Rec,the character of Ron Swanson, who was
cutting down a tree and making a he knewand paddling in himself,
he still spent this tiny amount of money,like less than $50 a year buying clothes
because he couldn't make clothes.
He was still driving on roads other people had paved,
(26:41):
even if he did sometimes step in
and fix the potholes for folks.
We all have needs, and it's fairly
arbitrary which ones are acceptable
and unacceptable on a social level,which ones get met and which ones don't.
I think about the number oflife skills that a lot of my friends
with intellectual disabilitieshave and skills that oftentimes
(27:06):
my non-disabled friends, especiallymy friends who are men, might not have.
We expect peoplewith intellectual disabilities to be able
to cook and clean and take careof their own homes. But
grown non-disabled men, that for some reasonis not the same expectation all the time.
I think disability culture is also aboutexposing that and about challenging that.
(27:29):
Yeah.
Yes. So, you mentioned you're
teaching a class about disability culture,
but you're also doing other projects.
Can you talk about some ofyour projects or at least one that
counts right now that you're doing?
(27:50):
Yeah. I'll mention one briefly, and thena lot more detail about another.
We're in the middle of putting together
an alt text music notation working group.
This is going to be really focused onEuropean-American Western art music style
notation at first, just because that'sthe source material and the team
(28:13):
that I've been able to put together.
I I had to pause everythingwhile I bring my graduate student worker
up to speed, gettingaccessibility certifications to help us
make sure all the PDFs are accessible.
But we're trying to devise a way to help
blind folks access music notation
apart from just Braille or just transcribing Braille, because there's some limitations with
(28:38):
the current most popularsystems of Braille music notation.
So that's one thing that ifyou're interested in and you have time
and energy to put into it,would love to hear from you.
You can email me directly.I'm easy to find.
One of my projects, though, that's quitedifferent and has surprised me because
was basically a footnote in a grantapplication, and now is
(29:02):
causing me to write a lot of other grant applications, is called Open the Gates Gaming
This is a project that grewout of a very local need.
Here in Southwest Virginia, during thepandemic, we had a lot of disabled folks
who wanted to play Dungeons & Dragons.
Dungeons & Dragons is the most populartabletop role-playing game in the world.
(29:22):
It's not even close.
It's a little embarrassinghow much of the market share they have.
But it exploded in popularity during thepandemic, again, thanks to being shown
on television, like with Stranger Things on Netflix, or
the fact that you could play it on Zoom, so you didn't have to be in the same room to play.
(29:43):
And there were all these digital toolsbeing created like D&D Beyond
and stuff like that that helped people playit online and helped get players going.
But it's also a systemthat has a huge cognitive load.
It's, unfortunately, a subculture thathistorically has been quite exclusive.
I know as a woman, I didn't getinto this hobby for a long time because
(30:06):
if I had to go to a gaming store and play with strange men,
I was often just subjected to a lot of sexismor shady behavior, and I wasn't included.
I think people of colorhave experienced much worse here.
But it also has a lot of progressive,
radically inclusive potential.
There's no reason that wecan't all play together.
(30:29):
It's a game that develops a lot of empathybecause you're creating a character
and stepping into their shoes for hours,but sometimes years, if not decades.
There are games that have beengoing on for decades,
which is wild to think about.
The local disability community wantedto play, and they didn't just want us
to create a separate set of roles so theycould play by themselves
(30:51):
or to play different games becausethere are other games like D&D
that are much more cognitively accessible.
Kids on Bikes is wonderful.
There's a lot of great systems out there,but they wanted to play this one, and
they wanted to play it with everybody.
They didn't want a segregated table.They wanted an integrated table.
We started developing cognitive accesstools to help bridge that gap,
(31:13):
initially with a decision guide becauseafter you sit around a table
and after the world is explained to you,
the person running the game will lookat you and say, What do you want to do?
And you can do anything.
You can say that you wantto jump off of a cliff.
You can say that you wantto open a pottery studio.
You can try to seduce a goblin.
(31:35):
Anything you can try to do in this game.
But that by itself can actuallybecome an obstacle.
So our decision guide wasjust prompting players.
Here are questions you can askor things you can think about
to help focus them in.
We also created spell cards becausethe magic system is really complicated.
So we created easier reference spell cardsin larger print that had information
(31:58):
presented in a standardized way.
And we made a class selector, a toolthat helps you build your character
because building the characteris often enough to scare people off.
It's a huge, complex processwith books that have hundreds of pages.
So we tried to simplify that and make itstorytelling from the beginning.
(32:20):
It was so exciting for peoplethat the demand for what
we were doing skyrocketed.
And once we started tryingto implement these three tools,
we realized we needed other stuff.
Now we're making videosthat explain concepts in
social media length, 90 seconds or less.
Here's what the concept is, and here'san example of people actually
(32:40):
playing with that concept.
They're multiple actors at a tablewith the dice, with all the things.
We also have a sample adventurenow, so you'll be able
to watch an entire session,so you know what to expect before you go
if you really want to do this.
We have ability cards,and we also have character sheets.
Our group eventually coalesceda couple of years ago around
(33:05):
this name, Open the Gates Gaming,because there's another side of it
that is creating more inclusive stories.
It's not just this fantasy realm builtaround around what European cis-het,
able-bodied white men would want.
We're trying to open up other stories,like other realms of storytelling, other possibilities
around disability and raceand gender and sexual orientation.
(33:30):
An idea for us is that playis a human right, and yet
it's something that's denied to a lot of people.
We believe that everyone is a storyteller,but not everyone is having the chance
to tell their stories, that systemsneed to be flexible to be accessible.
We're pulling that all togetherto then create these open access tools.
We are in the last stagesof prototype development.
(33:53):
We'll be doing play testing in early 2025, and everyone that comes and play tests with us
gets free custom dicethat have our logo on them.
They're very cute.
But this will all be open access.
We have a website, openthegatesgaming.org.
If you mess up and say, openthegatesgaming.com, it will redirect you.
So just minimal pressure there.
(34:14):
And we're on social media, although we'rejust slowly building those channels.
So we'll be releasing stuff as it's ready.
Currently, it's all 2014 rules because that's the set we can work with
where the free rules are publishedand on a Creative Commons license,
and we won't upset anybodyat Hasbro or Wizards of the Ghost.
(34:34):
But it's been a really coolproject because I've been able
to see that cognitive accessibilitycrosses so many barriers.
I mean, one of our most populardemographics now is parents,
people who don't get a lot of I am off in a way to just
be separate from the kids and do something fun.
So they don't want to spendthe whole night just learning some rules.
They want to get in and play.
(34:56):
But we're also seeing a rise in a needfor this, even from experienced players
after COVID, because long COVID oftenhas a lot of neurological manifestations.
So we've got things for experiencedplayers and new players, and we have
a commitment that it is always going tobe open access, free for everyone to use.
(35:17):
Our team...
Everyone in our team has a reasonwhy they would not have been able to
get past the gatekeeping, but we've allbeen able to leverage some aspect
of our privilege enough to get inside.
So now we're trying to kick Open the Gatesfrom the inside to let everybody in.
Wow, it's a fascinating project.
Yeah, it's a lot.
(35:39):
It's not where I thoughtI was going to be.
I never thought I was going to be doingthis, but it's really, really cool.
We will share all these linkson ArtsAbly so that people can have a look.
It's great.
I also read somewhere that if wewant to challenge you with another game,
which is the Star Wars game,if we fight with you, we will lose.
(36:01):
Is that right?
Probably. I don't know.
I mean, there are some people that getreally into the mechanics of the ships
that will lose me for a second.
But I have been a deeply devotedStar Wars fan from my earliest memories.
I love Star Wars.
In fact, the very firsttabletop role-playing game
(36:23):
I played was a Star Wars one.
It was the Fantasy Flight Edge of the Empire.
Yeah, Star Wars is the best.
And I am one of those people...I love The Last Jedi.
This is going to get you hate, but that's engagement, right?
The Last Jedi is one of the bestStar Wars movies ever made,
and I think people are going to get there.
(36:43):
You got to remember, peoplehated Empire Strakes back when
and now it's universallyheld up as one of, if not the best.
I think The Last Jedi is the same way.
People were disappointed becausethey had ideas of what it should be,
and it wasn't those things.
But I love Star Wars and this age ofStar Wars storytelling we're getting in.
That's far more inclusive,far more people's stories.
(37:07):
It's not just Joseph Campbell'smonolith anymore.
Yeah, it's a really exciting time.
Fortunately, we learna lot from the Andor show.
That's all I'm going to saya week after the election.
Sorry, I didn't get that.
The Andor show, it's fromthe early days of the Rebellion.
(37:28):
It's got some of the bestacting, writing, directing.
Even if you don't know anythingabout Star Wars, it's on Disney+,
but Andor is a good one to watch.
It's intense, though.
It's the most intense of any of them.
It's the only one I don't havemy niece's nephew's watch right now.
But whoever, somebodybehind the scenes did their work
(37:51):
on what resistance movements are like.
As somebody who wrote a dissertationset in 1930s France and was following
some people's stories into the '40s,it's intense.
Well, I have a last question for you.
Apart from George Lucas, who were
(38:12):
the people who really motivated you
to work in your field right now?
If you had some people to think ofwho really counted in your career,
who would it be and why?
I think there's a lot of folksthat I could name here.
The big caveat is this is what'spopping in my head in this moment.
(38:32):
And if I don't mention you,it's just because my brain
is not great on the spot sometimes.
I think about the fact that I would not have the job I have
or be doing what I'm doingif it wasn't for Andrew Dell’Antonio.
I know he's been on your show before.
He tends to undersell the rolethat he has in our community because it's
(38:52):
one that's a little hard to put on CVs.
But when I first started needingto use a cane all the time,
I've got my cane today.
Normally, I've got a rollator or crutches,whatever my body wants to do that day.
But when I first needed to use a caneand I realized that I couldn't
hide my disabilities anymore, Iexperienced a lot of ableism in graduate school.
(39:17):
I'm still processing that.
There are news articles about some ofmy professors in graduate school.
I'll leave it there.
But I experienced a lot.
When I realized I couldn'thide it anymore,
then the question came up of, What do you want to say?
As an autistic person, I have a hard timelying or even telling half-truths.
(39:39):
It's all or nothing with me, usually.
But I also didn't know whatthe implications would be.
I reached out to Andrew Dell’Antoniobecause I noticed that he was
also friends with Amy Sequenzia,who's an incredibly important
non-speaking autistic person.
(39:59):
Amy's work is so, so important.
I cannot emphasize that enough.
But I thought that was odd.
I'm like, There's a musicologist here.
What is going on?
I reached out to Andrew,and he met up with me.
I think it was AMS in Rochester.
I was on medical leave, but I was withfamily in upstate New York, so I went.
And not only did he introduce meto a network of neurodivergent academics,
(40:24):
so not just autistics,but also people with ADHD, other things,
many of whom are not out publicly orThey're out about other identities,
so they can't take the hitfor being out about everything.
Me being out as an autistic personis rough.
I don't want people to ever come outbecause they think that they should.
(40:45):
You don't owe anyone anything.
Your safety and well-beingis the most important.
I can be out because I'ma white, cis-het woman.
That's why I can be out.I had some privilege to leverage.
But anyway, Andrew introduced meto a lot of people who told me the truth.
I learned the good, the bad, the ugly.
I was pretty prepared, I will say,when I made the decision to be open
(41:10):
about this and to do this work.
Because to me, it's also really importantthat if you're doing disability work,
you don't need to share everything aboutyourself, but you do need to share
your relationship to the community,because that's an important way
for us to understandand evaluate what you're saying.
It's just a really importantpiece of the puzzle.
Andrew helped me thinkthrough all of those things
(41:31):
for a very long period of time.
And without him, I either wouldn'thave been out and working in disability,
or I might have done it very wrong.
It might have been more dangerous.I wouldn't have been prepared.
I wouldn't have felt like I had a network.
And to this day, he's still justan incredibly essential part
of my support system,and I'm very, very grateful for him.
(41:52):
And his work also helps meunderstand what I wanted to do
with pedagogy in the classroom.
He's been very encouragingof a lot of my adventures.
I did make him play D&D at least once.
He played when he was a kid,but I brought it back.
I think that it's hard to underestimatehow important that was.
(42:15):
I think about everyone who has beenor is in Disability Culture
at the University of Michigan.
This is an organization that, kind of like RAMPD,
I wasn't in it at the very beginning,but I was there very near the beginning.
There are so many folksat DC@U-M, Luke Kudryashov,
(42:35):
Jeffrey Edelstein, Ashley Wiseman,
Solomon Furious Worlds, best name ever.
Just so many people thatI met through that organization
and working together who taught me.
The first time I learned whatdisability justice was, it was from them.
The first time I learned to be comfortableexplaining my access needs or what
(42:55):
access intimacy was, it was them,and their fantastic Halloween parties.
That was really, really important.
Even today, folks like Ashley Shew,for example, here at Virginia Tech,
I don't know that I wouldhave lasted without her.
I had long phone call with herthis morning, and I'm sure
(43:18):
we'll be texting all day.
She is marvelous, and I owe her a lot.
I think I wouldn't have gotten involvedwith RAMPD, if not for Gaelynn Lea.
The first time I called her,I was so star struck.
I was trying to book her for an event.
It's adorable to think aboutbecause now
she's one of my first calls after the election.
(43:39):
Now it feels like we're comrades in arms,but back then I was terrified of her.
Yeah, there's so many folks.
And I love that I've gotten to a point where - My Open the Gates Gaming team,
I joked to one of my student workerswho is neurodivergent that
every one of my team is neurodivergent.
(44:01):
They just don't all know it yet.
And then it became a gameof trying to spot who knew it.
That's probably a bit of an exaggeration.
But the fact that I have so many peoplewho are different than me, but just
believe me if I need something,and then they're there for it,
that think about my access needs in advance.
(44:23):
I remember the first time I walked intoa room and they turned off the lights
that sometimes set off my migraine, andI didn't even know that they knew that.
Just all the little things,like the fact that I have
chosen family that will be there.
It's just remarkable.
Yeah.
I should stop naming people because I'monly going to miss more and more of them.
(44:46):
Well, thank you so muchfor this time together.
It was a great conversation.
I'm sure we're going to see each otherin another - one project or another.
I hope so.
I'm so excited that you're doingthis because I think ArtsAbly is really
helping connect people and fill this gapthat everybody has talked about,
(45:09):
but nobody's done something about.
I'm really glad that you're doing it.
Thank you for the opportunityand your persistence.
Even as my schedule just kept saying no,I'm glad that you kept saying yes,
so we can make it work.
Thank you.
Yeah, have a great day and talk soon.
Awesome. Thank you. Bye.
(45:29):
Bye.
♪ Closing theme music ♪
♪ Opening theme music ♪
Hello, and welcome to this episodeof ArtsAbly in Conversation.
My name is Diane Kolin.
This series presents artists, academics,and project leaders who dedicate their
(00:26):
time and energy to a better accessibilityfor people with disabilities in the arts.
You can find more of these conversationson our website, artsably.com,
which is spelled A-R-T-S-A-B-L-Y dot com.
♪ Theme music ♪
(00:55):
Today, ArtsAbly is in conversation withElizabeth McLain, an assistant professor
of Musicology and Directorof Disability Studies at Virginia Tech.
You can find the resources mentioned byElizabeth McLain during this episode
on ArtsAbly's website in the blog section.
(01:15):
Welcome to this new episodeof ArtsAbly in Conversation.
Today, I am with Elizabeth McLain, who is Assistant Professor
of Musicology and Directorof Disability Studies at Virginia Tech.
Welcome, Elizabeth.
Thanks.Thank you for having me.
Thank you for taking the timein your busy schedule.
I know you are very, very busy.
(01:36):
Yeah, thanks for working around that.
I really need to work on my schedule.
It's a bit much.
I always like to knowa little bit more about my guests.
I wanted to know a bitabout your background, who you are,
what made you start in music,things like that,
How I got started in music.
(01:57):
I grew up in a familywhere music was very important,
but it wasn't anyone's day job.
So all of my family members played brassinstruments, and they did it just for fun,
but I was the first one to wantto go to music school and pursue that.
I was working on a degreein trumpet performance
when more of my disabilities manifested.
(02:20):
I'm autistic, but didn't reallyget a formal diagnosis until my 20s.
I also have Ehlers-Danlos syndrome, whichcauses all of my joints to dislocate
when they want to, among other fun things.
When I was in undergrad,
I think my second into my third year,
(02:43):
my ribs started dislocatingwhile I was playing trumpet, especially
when I was playing piccolo trumpet,which requires just a lot more force.
It was very confusing for doctors.
They didn't immediately catch that that'swhat was happening, and it still took,
I mean, almost another decadeto know why it was happening.
In fact, if I hadn't gotten the autismdiagnosis, I don't know
if I would have gotten the diagnosisfor Ehlers-Danlos syndromes.
(03:06):
And these two thingsseem to both correlate with each other.
If you have one, you'remore likely to have the other,
but also the other way around.
So on top of just asthma and other thingsthat were putting pressure
on my lungs and on my rib cage, very clearly this became
not a viable career path, let me put it that way.
(03:27):
I explored orchestral conductingfor a while, which I liked
and I think I was pretty good at.
But after going on some auditions,I realized that the path
to get there was just odd.
It was very much based on personalcharisma, and there's a lot
of obstacles to navigate.
I was used to the sexismfrom being a trumpet player
(03:50):
where women are still a minority.
But it really did not seem likea viable path in terms of,
Oh, if I put the work into it, I will end upbeing able to make a living off of it.
It was a lot more confusing than that, andespecially with my health falling apart,
I didn't know if I could count on it.
I met a professor, his nameis Michael Saffle,
(04:13):
at Virginia Tech, where I did my undergrad.
And he just needed a research assistantto work on a book about Liszt
and some letters between Liszt and D'Agoult.
And I could step in and help withmy background in French.
And that's when I learnedthat I was musicologist.
It just seemed to fit.
A lot of the skills that I had, whetherit was learning different languages or
(04:36):
I had been also working on a bachelor'sin history the whole way along
and things like that, everything fell into place.
So then I did my graduate workat the University of Michigan,
where as I acquired more of mobilitydisability side to my chronic health
disabilities and really got the namefor why my brain was so different and why
(04:58):
I was struggling,got that autism diagnosis
I became involved in disability organizingfirst at the local level,
things that needed to get doneat the University of Michigan,
and bringing the knowledge I hadand the knowledge I was gaining every day
to the the Schoolof Music, Theater and Dance.
(05:19):
I don't want to forget Theater and Dancejust because I'm not talented in either.
But the School of Music, Theaterand Dance at the University of Michigan,
Musicology Department.
It was a gradual thing.
I was doing a lot more on theactivism side than getting into pedagogy.
It took many years before I realized thatdisability was infiltrating my research.
(05:43):
I came to Virginia Tech in 2019to be an instructor full-time
while I was finishing up my dissertation.
That timing will probably bring a lot ofbells for folks because then the pandemic
hit and everything became a lot trickier.
But I finished upand defended my dissertation
and graduated in August of 2022.
(06:06):
I defended my dissertation, I think
it was less than a week before I had major surgery
to have a spinal fusion, and I had to do allof my revisions and all of the submission
and paperwork and stuff in the first weekthat I was out of the hospital for that.
So it's a bit of a blur,but it's very nice to have it done.
(06:27):
I'm very grateful to Mark Clagueand everybody else at Michigan
that helped me cross the finish line.
So yeah, this year I started asmy new role, as you mentioned,
Assistant Professor of Musicologyin the School of Performing Arts
in the College of Architecture,Arts and Design here at Virginia Tech.
But then I'm also Director ofDisability Studies in the Academy of
Transdisciplinary Studies in the Collegeof Liberal Arts and Human Sciences.
(06:52):
That's a lot to say.
I did it without notes this time,so I'm very proud of myself.
Yeah, that's a bit of how Igot from where I was to here, I guess.
Yeah, and which explainsthe busy schedule.
Yes.
I'm straddling two colleges, twounits, two completely different lives.
Frankly, learning about disability studiesas I go, I didn't have access
(07:15):
to being able to take classesin disability studies.
And that's not unusual.
A lot of professors of disability studieshave to add this knowledge on
after they're done with their coursework.
So I do my best to read onechapter, one article in the realm
of disability studies, but alsodisability activism and arts and all
(07:36):
of that, disability culture every day.
And I fail a lot of times,but I do succeed a lot of times.
I'm hoping eventually - my lived experience is at one level, and I'm
hoping the academic knowledgeto talk about it, they'll meet soon.
That's my hope.
But you're also the co-chairof the Music and Disability Study Group
(07:58):
at the American Musicology Society?
I was until recently.
I did step down last year,which was a year early, and
that's why it looks like I still am.
I stepped on a year early because my co-chair, James Deaville, and I
had talked about the needfor the co-chairs to overlap
so that we don't lose two at the same time.
(08:19):
Because I had such a busy scheduleand so many research projects going,
I offered to be the one to step down first.
But I'm really proudof the work that we did there.
It was wonderful to be able tostep down and walk away and know that
everything I wanted for the group
was going to manifest with or without me.
(08:42):
We'd made several gains, but I could justsee the that we're on and I think
bringing new energy in has beenreally helpful in continuing that.
This group is really fantastic.
It's really a good group of people
who really are activists in their field,
try to make things happen, you including.
(09:05):
I'm really happy to have been ableto work with this group also and with
different people from this group.
I think you can be really proudof what you've accomplished in that.
Yeah, my big goals for the group,I love seeing that they're happening
even when I'm on the sidelines.
Making sure that we're collaboratingwith people from different fields,
(09:29):
centering the experience of disabledartists, which may sound like
a no-brainer, but when you're in thiswork, it's very common for stuff to slide
into music studies of disability.
We're talking about disabled composersor disabled performers performers
or whatever, but we're not reallyapplying a disability studies lens.
(09:49):
And a lot of times, maybe the peoplestudying it aren't themselves disabled
or aren't in communityor don't have that background.
And there's a lot of great workthat falls into that category
that I use every day, and I love.
It's fantastic work.
But I wanted to make sure we were growingthis segment of music studies
surrounding disability that really was bringingdisability studies to the table and
(10:12):
trying to find ways in which our academicwork could have a real-world impact.
So, yeah, it's been really coolto watch the group do that.
I go on record all the time,so I'm not afraid of doing it here,
that I'm very disappointedin the lack of access in our society,
in the American Musicological Society.
I think we've actuallytaken some steps backward
(10:33):
when it comes to access in recent years.
And that's the one thingthat I'm nervous about.
It's not the future of the group.
It's whether people like me can continue to be a part
of this society, whether this society will continue to serve us or let us serve them even,
or if one day we end up either needing to strike off on our own
(10:53):
or find another organization likethe Society for American Music or RAMPD
or something like that that wecan take this fantastic work to.
Yeah. And recently, there has been conversationabout someone we know that who is part
of a group and who had to step downfrom presenting because there were a lot
(11:15):
of access needs that were not met.
And so it's sad.
Especially when you see a smaller societylike the Society for Music Theory
offering a significant amountof their programming online, not just for
people who have gone through this onerousaccommodation process, but for everyone.
(11:36):
I love the curb-cut effect, and it'san example of that, where disabled people
needed to be able to access the societyremotely for presenting and for attending.
But doing that also benefited parentsof young children who couldn't travel,
people who are in employment situationswhere they're not getting any funding
for traveling or they can'tget their teaching covered.
(11:57):
It ends up helping a wide rangeof people, including people who are part
of our society but can no longertravel to the US with visa restrictions
or all sorts of things like that.
The fact that, again, a smaller societylike SMT has been able to accomplish it,
I feel like that should bean example for AMS.
Although when it comes to curb cuts, I'm…
(12:19):
This is completely off topic, butI'm having a lot of frustrating feelings.
When we're taping this, it isa week after the US election.
I was thinking about the fact thatwhen we talk about disability and access,
this idea of curb cuts as a metaphor, thefact that when you give disabled people
(12:41):
access, many people benefit from it.
Coming from when we've had to retrofitsidewalks to have that little cut
in the curb so you can go up there in a wheelchair,
well, that's also going to help people pushing around grocery carts
or strolers or just all sorts of folks.
The thing that makes me furious aboutcurb cuts is when disabled people fight
(13:03):
for them alone, and then they benefiteveryone, and then disabled people
have to fight to keep them because we'realways in danger of losing our access.
It's Anita Cameronwho reminds minds everyone.
You have to fight for your rightsand then fight to keep them.
You can't let off the pressure.
But then on top of that, there are timeswhen it feels like in the United States,
(13:28):
we're gearing up for a lot more fights.
We're gearing up to try to keep Medicaid.
We're gearing up to try to keep access to our health care,
a lot of things that have been threatened.
And it's been infuriatingto see people I know who benefited
from the work disabled activistsdid, from disability legislation.
I mean everything from caps on Insulinto the Americans with Disabilities Act
(13:50):
to infrastructure changes like curb cuts.
And not only are they not in the fightwith us, but they try to tell us
everything's going to be okaybecause they've never had to fight for
this thing that they take for granted.So I don't know.
When I think about curb cuts, I thinkabout the fact that that should produce
more solidarity with disabled people.
And instead, too often it'sinterpreted as, Okay, we can give you
(14:13):
this cookie because it will alsobenefit benefit other people.
I don't know if that makes sense.
Yeah, it makes sense.
Yeah, I've been perseverating on it a little bit.
But in a way, we are both partof an organization called the RAMPD
that you mentioned briefly, and RAMPD is doing
that work inside the music community.
(14:35):
I wanted to know a little bitabout your arrival to RAMPD
and your work with people in RAMPD.
Yeah, I came into RAMPD.
I was not in the founding cohort,but I think fairly quickly,
definitely within the first year.
(14:57):
It was Gaelynn Lea, who's oneof the cofounders of RAMPD, as you know,
who really encouraged me to join.
It's a little interesting.
Unlike you, I'm not currentlyperforming as a musician.
At first, I thought, Well,this isn't quite for me.
I'm happy to support it,but it's really only for artists.
(15:17):
It really hasn't been the case, though.
I've had the goodfortune at Virginia Tech.
My colleague Ashley Shew and I,and some other folks here
and at the University of North Carolina,Charlotte,
received a grantfrom the Mellon Foundation for what we're
calling a Disability Community TechnologyCenter that's really trying to bring
disability culture and artsand folks that talk about
(15:40):
disability justice to Appalachia.
Working with RAMPD,it's been fantastic to then be able
to connect with artists and start buildingthese residency programs, which
have been delayed significantly becausewe've lacked accessible infrastructure
when it comes to venues, especially.
We had to put things on holdand then try to get venue problems
(16:02):
fixed and raise funds for thatand then find alternate venues.
Now we're gearing back up.
But it's been really nice developing that project in partnership
with all of the folks at RAMPD who are doing this work.
I've been able to serve mostlyon the membership committee.
I think I was on PR for a hot minuteand then jumped over to membership
(16:25):
or engagement is what we call it.
But a lot of the stuff we're dealing with is membership, and then some of them planning.
I had the opportunity to speak tothe National Independent Venue Federation
a while back, I think almosta year ago now, about trying to improve
accessibility for their venues and waysthat you can do it, even on a low budget.
(16:45):
I was able to go to the White Housewith some folks from RAMPD.
There have been a lotof terrific opportunities.
So much of it is just community building.
I'm hoping that in the coming years,we can build up even more on the side
of people who are behind the line,
academics, industry professionals,
(17:06):
because I think right now there's a lotof burden on artists to run everything.
That can be really tricky becausethey have tour schedules and their lives
are just a little less predictablethan those of us who are fortunate
to have more or less a 9:00 to 5:00.
I'd like to get a lot moreof us represented there.
Yes. And there is a new musicologistalso right now who is also a performer,
(17:28):
but it's nice to see that We are moreand more to consider, Okay,
let's join that and try to work onthe connections and the community.
Absolutely.
I think a lot of folksend up feeling like they're alone.
We're also pushed to speak on things
as experts that we're not 100% experts in.
(17:50):
This is something I've only been thinkingabout a lot in the past year.
How often disabled folks go from diagnosisor realizing they're disabled
or identifying as disabled to having tospeak for the community and being treated
as an expert on accessibility.
And then all of the education you mightlack while you're trying to do that,
like you just kind of...
(18:10):
Now I'm thinking about the factthat there are a ton of us.
We can specialize.
We can share opportunities around.
We don't have to carry that alone becausethat pressure to be the ambassador
for disabled musicians or disability inthe arts or to say that,
Yes, I can solve all of your accessibility in the arts.
I mean, that's how questions,that's how we get burn out.
(18:34):
Whereas RAMPD is increasingly, I think, and I hope,
helping us see that no one of us has to be an expert on everything.
We can work together, we canmove together, where we can build
the world that we want to see together.
Yes.
Recently, Lachi has organizeda meeting to explain to pro members
(18:55):
what is the social model of disability,
what are - What is a possibility of
talking about people with disabilities?
What are things that wehear in our society all the time
and that bother us, but why?
(19:17):
It was a one-hour conversation.
She presented things and thenshe launched the conversation.
It was very nice to have thatbecause, one, it's important.
Two, some people who just joinedthe community and say, Okay, so I'm now
part of the big family of musiciansor performers with disabilities.
(19:42):
Now what?
Exactly. Just being disabled or being autisticdoesn't mean that you know anything.
I've been autistic my whole life.
It took me a long timeto really understand that.
But even after getting a diagnosis,it's like, Okay, Go on your way.
And of course, the person whodiagnosed me, it was a horrible process.
(20:06):
He just told me to goon the Autism Speaks website.
That was the only resource he gave me.
That was the only follow-up.
And I was moving to France for a research year.
To compound it further, I also ended up with an emergency surgery
in Roanoke, Virginia, when I was visiting my brother.
It was a nightmare time.
But I'm just in France by myself,trying to do my archival work
and function in a different language.
(20:28):
And...
Oh, yeah, you're also autistic.What on earth does that mean?
It wasn't until I came back from France,and I joined a support group that
I think it was supposed to be very muchled by someone at our counseling center
at the University of Michigan.
But the autistics justtook over every single week.
She was so sweet.She's wonderful.
(20:49):
She'd come in and she'd have a planagenda, and she'd distribute poker chips
that had a specific meaning.
So we had some nonverbal communication.
And then we would just dowhatever we wanted to do every week.
And she let us.
She did let us guide it.
So it turned more into,She has a plan if we don't have one,
and then we just took off.
But anyway, that's where I met a friendof mine named Luke Kudryashov, who's now
(21:11):
at the University of Minnesotaas an accessibility specialist.
And Luke really brought mein and helped me understand
how to survive as an autistic adultand what I was experiencing
and connect me with community.
I think when people are tryingto learn more about disability,
if you're on social media or you're looking at going to a presentation,
(21:33):
there are some questions you have to ask yourself.
All disabled people canspeak about their own experience.
That is true.
But the minute we go beyondour own experience, you do have
to wonder what our credentials are.
And it's not just professional training.
I could get a psychology degree, but that doesn't actually mean
(21:53):
that I know much about mentalhealth-related disabilities.
The thing that I'm really interested inis who is in community with other people?
Because either I'm speakingabout my autistic experience
or I am able to start pointingtowards, You should read this person.
This person says this.
This is how it's differentfrom what I hear to be autistic.
(22:13):
And there are some great peoplewho are Indigenous and autistic.
I learned so muchfrom them on social media.
Folks who are Black and autistic.
Autistic parents of autistic kidsare some of my favorites in the universe
because they just understand things muchmore holistically than the rest of us.
So yeah, checking out and seeing, is thisperson in community with other people?
(22:34):
Are they readingand referencing other stuff?
It's funny because in one sense...Okay, yeah.
Common sense.Of course, we know to do that.
But on the other, we almost never do.
It's really tricky.
But yeah, that being in community partof RAMPD is really important.
I think the fact that we're continuing to educate each other
(22:56):
and learn about these things, yeah, that can only help.
For sure.
Well, we talked a little bitabout that, but what is it for you,
what does it mean for you to be in anenvironment that promotes accessibility
in the arts or disability culture?
The most important thing for meis if disabled people are in charge.
(23:19):
I think I used to be a lotmore forgiving about this, but now
that is almost my bare minimum.
My armor is up, and I almostassume that I'm not going to be included.
If I see disabled people not justwith a seat at the table,
but a position of power.
Because a seat at the tablewithout power or agency is tokenism,
as Leah Lakshmi Piepzna-Samarasinhatells us, in care work.
(23:44):
I hope I didn't butcher that.
I love them, so I apologize if I did.
But that idea is definitely in there.
Accessibility for me is not just beingable to get into a space, it's being able
to have agency and power in that spaceand being able to transform it.
So are they advertising in advancewhat access they do have?
(24:05):
And are they providing a way foryou to ask about other access you need?
I think that's really important to me.
Disability culture is something that...
I have a class called Disability Cultureand the Arts that I teach every year.
It's very, very important to me.
When I say disability culture, it'simportant to know it's not a monolith.
You're trying to talk about an aggregateknowing that every individual within it
(24:28):
probably doesn't fit whatever definitionyou come up with, and that we have
subcultures based on types of disability,but also on how disability intersects with
things like race and gender, because
although ableism, and sexism, and racism, transphobia,
all of are interlockingand interdependent systems of oppression.
(24:48):
They all reinforce each other.
They all shape your experiences.
The way I experience ableism as a white autistic woman is going to be
different than a black trans autistic woman, for example.
But disability culture, to me,it's about the things that we care about.
(25:10):
It's about how we understand ourselves.
In some sense,it's the language that we use.
I think increasingly valuesassociated with disability justice
are playing a bigger and bigger rolein how we understand disability culture.
Not that everyone's informed on the topic,but a lot of things that are articulated
in the principles of disabilityjustice, like interdependence
(25:34):
and intersectionality.
A lot of these things come out ofthat culture that we've created.
It tends to be a culture thatprioritizes care and that understands
the value value of everyone, no matterwhat they can and can't contribute.
It's still a culture that's problematicand exclusionary because it exists
in the framework of other cultures.
(25:55):
But I think it's often at its best,
it's a space of trust where you don't feel any shame
for having needs and where people will help you get those needs met.
I think a lot about fictional characterswhen I teach my students, in part
because I don't want to call out realliving human beings if I don't have to.
(26:20):
I'm going to have to update my references,though, because they're already getting too old.
But I think about in Parks and Rec,the character of Ron Swanson, who was
cutting down a tree and making a he knewand paddling in himself,
he still spent this tiny amount of money,like less than $50 a year buying clothes
because he couldn't make clothes.
He was still driving on roads other people had paved,
(26:41):
even if he did sometimes step in
and fix the potholes for folks.
We all have needs, and it's fairly
arbitrary which ones are acceptable
and unacceptable on a social level,which ones get met and which ones don't.
I think about the number oflife skills that a lot of my friends
with intellectual disabilitieshave and skills that oftentimes
(27:06):
my non-disabled friends, especiallymy friends who are men, might not have.
We expect peoplewith intellectual disabilities to be able
to cook and clean and take careof their own homes. But
grown non-disabled men, that for some reasonis not the same expectation all the time.
I think disability culture is also aboutexposing that and about challenging that.
(27:29):
Yeah.
Yes. So, you mentioned you're
teaching a class about disability culture,
but you're also doing other projects.
Can you talk about some ofyour projects or at least one that
counts right now that you're doing?
(27:50):
Yeah. I'll mention one briefly, and thena lot more detail about another.
We're in the middle of putting together
an alt text music notation working group.
This is going to be really focused onEuropean-American Western art music style
notation at first, just because that'sthe source material and the team
(28:13):
that I've been able to put together.
I I had to pause everythingwhile I bring my graduate student worker
up to speed, gettingaccessibility certifications to help us
make sure all the PDFs are accessible.
But we're trying to devise a way to help
blind folks access music notation
apart from just Braille or just transcribing Braille, because there's some limitations with
(28:38):
the current most popularsystems of Braille music notation.
So that's one thing that ifyou're interested in and you have time
and energy to put into it,would love to hear from you.
You can email me directly.I'm easy to find.
One of my projects, though, that's quitedifferent and has surprised me because
was basically a footnote in a grantapplication, and now is
(29:02):
causing me to write a lot of other grant applications, is called Open the Gates Gaming
This is a project that grewout of a very local need.
Here in Southwest Virginia, during thepandemic, we had a lot of disabled folks
who wanted to play Dungeons & Dragons.
Dungeons & Dragons is the most populartabletop role-playing game in the world.
(29:22):
It's not even close.
It's a little embarrassinghow much of the market share they have.
But it exploded in popularity during thepandemic, again, thanks to being shown
on television, like with Stranger Things on Netflix, or
the fact that you could play it on Zoom, so you didn't have to be in the same room to play.
(29:43):
And there were all these digital toolsbeing created like D&D Beyond
and stuff like that that helped people playit online and helped get players going.
But it's also a systemthat has a huge cognitive load.
It's, unfortunately, a subculture thathistorically has been quite exclusive.
I know as a woman, I didn't getinto this hobby for a long time because
(30:06):
if I had to go to a gaming store and play with strange men,
I was often just subjected to a lot of sexismor shady behavior, and I wasn't included.
I think people of colorhave experienced much worse here.
But it also has a lot of progressive,
radically inclusive potential.
There's no reason that wecan't all play together.
(30:29):
It's a game that develops a lot of empathybecause you're creating a character
and stepping into their shoes for hours,but sometimes years, if not decades.
There are games that have beengoing on for decades,
which is wild to think about.
The local disability community wantedto play, and they didn't just want us
to create a separate set of roles so theycould play by themselves
(30:51):
or to play different games becausethere are other games like D&D
that are much more cognitively accessible.
Kids on Bikes is wonderful.
There's a lot of great systems out there,but they wanted to play this one, and
they wanted to play it with everybody.
They didn't want a segregated table.They wanted an integrated table.
We started developing cognitive accesstools to help bridge that gap,
(31:13):
initially with a decision guide becauseafter you sit around a table
and after the world is explained to you,
the person running the game will lookat you and say, What do you want to do?
And you can do anything.
You can say that you wantto jump off of a cliff.
You can say that you wantto open a pottery studio.
You can try to seduce a goblin.
(31:35):
Anything you can try to do in this game.
But that by itself can actuallybecome an obstacle.
So our decision guide wasjust prompting players.
Here are questions you can askor things you can think about
to help focus them in.
We also created spell cards becausethe magic system is really complicated.
So we created easier reference spell cardsin larger print that had information
(31:58):
presented in a standardized way.
And we made a class selector, a toolthat helps you build your character
because building the characteris often enough to scare people off.
It's a huge, complex processwith books that have hundreds of pages.
So we tried to simplify that and make itstorytelling from the beginning.
(32:20):
It was so exciting for peoplethat the demand for what
we were doing skyrocketed.
And once we started tryingto implement these three tools,
we realized we needed other stuff.
Now we're making videosthat explain concepts in
social media length, 90 seconds or less.
Here's what the concept is, and here'san example of people actually
(32:40):
playing with that concept.
They're multiple actors at a tablewith the dice, with all the things.
We also have a sample adventurenow, so you'll be able
to watch an entire session,so you know what to expect before you go
if you really want to do this.
We have ability cards,and we also have character sheets.
Our group eventually coalesceda couple of years ago around
(33:05):
this name, Open the Gates Gaming,because there's another side of it
that is creating more inclusive stories.
It's not just this fantasy realm builtaround around what European cis-het,
able-bodied white men would want.
We're trying to open up other stories,like other realms of storytelling, other possibilities
around disability and raceand gender and sexual orientation.
(33:30):
An idea for us is that playis a human right, and yet
it's something that's denied to a lot of people.
We believe that everyone is a storyteller,but not everyone is having the chance
to tell their stories, that systemsneed to be flexible to be accessible.
We're pulling that all togetherto then create these open access tools.
We are in the last stagesof prototype development.
(33:53):
We'll be doing play testing in early 2025, and everyone that comes and play tests with us
gets free custom dicethat have our logo on them.
They're very cute.
But this will all be open access.
We have a website, openthegatesgaming.org.
If you mess up and say, openthegatesgaming.com, it will redirect you.
So just minimal pressure there.
(34:14):
And we're on social media, although we'rejust slowly building those channels.
So we'll be releasing stuff as it's ready.
Currently, it's all 2014 rules because that's the set we can work with
where the free rules are publishedand on a Creative Commons license,
and we won't upset anybodyat Hasbro or Wizards of the Ghost.
(34:34):
But it's been a really coolproject because I've been able
to see that cognitive accessibilitycrosses so many barriers.
I mean, one of our most populardemographics now is parents,
people who don't get a lot of I am off in a way to just
be separate from the kids and do something fun.
So they don't want to spendthe whole night just learning some rules.
They want to get in and play.
(34:56):
But we're also seeing a rise in a needfor this, even from experienced players
after COVID, because long COVID oftenhas a lot of neurological manifestations.
So we've got things for experiencedplayers and new players, and we have
a commitment that it is always going tobe open access, free for everyone to use.
(35:17):
Our team...
Everyone in our team has a reasonwhy they would not have been able to
get past the gatekeeping, but we've allbeen able to leverage some aspect
of our privilege enough to get inside.
So now we're trying to kick Open the Gatesfrom the inside to let everybody in.
Wow, it's a fascinating project.
Yeah, it's a lot.
(35:39):
It's not where I thoughtI was going to be.
I never thought I was going to be doingthis, but it's really, really cool.
We will share all these linkson ArtsAbly so that people can have a look.
It's great.
I also read somewhere that if wewant to challenge you with another game,
which is the Star Wars game,if we fight with you, we will lose.
(36:01):
Is that right?
Probably. I don't know.
I mean, there are some people that getreally into the mechanics of the ships
that will lose me for a second.
But I have been a deeply devotedStar Wars fan from my earliest memories.
I love Star Wars.
In fact, the very firsttabletop role-playing game
(36:23):
I played was a Star Wars one.
It was the Fantasy Flight Edge of the Empire.
Yeah, Star Wars is the best.
And I am one of those people...I love The Last Jedi.
This is going to get you hate, but that's engagement, right?
The Last Jedi is one of the bestStar Wars movies ever made,
and I think people are going to get there.
(36:43):
You got to remember, peoplehated Empire Strakes back when
and now it's universallyheld up as one of, if not the best.
I think The Last Jedi is the same way.
People were disappointed becausethey had ideas of what it should be,
and it wasn't those things.
But I love Star Wars and this age ofStar Wars storytelling we're getting in.
That's far more inclusive,far more people's stories.
(37:07):
It's not just Joseph Campbell'smonolith anymore.
Yeah, it's a really exciting time.
Fortunately, we learna lot from the Andor show.
That's all I'm going to saya week after the election.
Sorry, I didn't get that.
The Andor show, it's fromthe early days of the Rebellion.
(37:28):
It's got some of the bestacting, writing, directing.
Even if you don't know anythingabout Star Wars, it's on Disney+,
but Andor is a good one to watch.
It's intense, though.
It's the most intense of any of them.
It's the only one I don't havemy niece's nephew's watch right now.
But whoever, somebodybehind the scenes did their work
(37:51):
on what resistance movements are like.
As somebody who wrote a dissertationset in 1930s France and was following
some people's stories into the '40s,it's intense.
Well, I have a last question for you.
Apart from George Lucas, who were
(38:12):
the people who really motivated you
to work in your field right now?
If you had some people to think ofwho really counted in your career,
who would it be and why?
I think there's a lot of folksthat I could name here.
The big caveat is this is what'spopping in my head in this moment.
(38:32):
And if I don't mention you,it's just because my brain
is not great on the spot sometimes.
I think about the fact that I would not have the job I have
or be doing what I'm doingif it wasn't for Andrew Dell’Antonio.
I know he's been on your show before.
He tends to undersell the rolethat he has in our community because it's
(38:52):
one that's a little hard to put on CVs.
But when I first started needingto use a cane all the time,
I've got my cane today.
Normally, I've got a rollator or crutches,whatever my body wants to do that day.
But when I first needed to use a caneand I realized that I couldn't
hide my disabilities anymore, Iexperienced a lot of ableism in graduate school.
(39:17):
I'm still processing that.
There are news articles about some ofmy professors in graduate school.
I'll leave it there.
But I experienced a lot.
When I realized I couldn'thide it anymore,
then the question came up of, What do you want to say?
As an autistic person, I have a hard timelying or even telling half-truths.
(39:39):
It's all or nothing with me, usually.
But I also didn't know whatthe implications would be.
I reached out to Andrew Dell’Antoniobecause I noticed that he was
also friends with Amy Sequenzia,who's an incredibly important
non-speaking autistic person.
(39:59):
Amy's work is so, so important.
I cannot emphasize that enough.
But I thought that was odd.
I'm like, There's a musicologist here.
What is going on?
I reached out to Andrew,and he met up with me.
I think it was AMS in Rochester.
I was on medical leave, but I was withfamily in upstate New York, so I went.
And not only did he introduce meto a network of neurodivergent academics,
(40:24):
so not just autistics,but also people with ADHD, other things,
many of whom are not out publicly orThey're out about other identities,
so they can't take the hitfor being out about everything.
Me being out as an autistic personis rough.
I don't want people to ever come outbecause they think that they should.
(40:45):
You don't owe anyone anything.
Your safety and well-beingis the most important.
I can be out because I'ma white, cis-het woman.
That's why I can be out.I had some privilege to leverage.
But anyway, Andrew introduced meto a lot of people who told me the truth.
I learned the good, the bad, the ugly.
I was pretty prepared, I will say,when I made the decision to be open
(41:10):
about this and to do this work.
Because to me, it's also really importantthat if you're doing disability work,
you don't need to share everything aboutyourself, but you do need to share
your relationship to the community,because that's an important way
for us to understandand evaluate what you're saying.
It's just a really importantpiece of the puzzle.
Andrew helped me thinkthrough all of those things
(41:31):
for a very long period of time.
And without him, I either wouldn'thave been out and working in disability,
or I might have done it very wrong.
It might have been more dangerous.I wouldn't have been prepared.
I wouldn't have felt like I had a network.
And to this day, he's still justan incredibly essential part
of my support system,and I'm very, very grateful for him.
(41:52):
And his work also helps meunderstand what I wanted to do
with pedagogy in the classroom.
He's been very encouragingof a lot of my adventures.
I did make him play D&D at least once.
He played when he was a kid,but I brought it back.
I think that it's hard to underestimatehow important that was.
(42:15):
I think about everyone who has beenor is in Disability Culture
at the University of Michigan.
This is an organization that, kind of like RAMPD,
I wasn't in it at the very beginning,but I was there very near the beginning.
There are so many folksat DC@U-M, Luke Kudryashov,
(42:35):
Jeffrey Edelstein, Ashley Wiseman,
Solomon Furious Worlds, best name ever.
Just so many people thatI met through that organization
and working together who taught me.
The first time I learned whatdisability justice was, it was from them.
The first time I learned to be comfortableexplaining my access needs or what
(42:55):
access intimacy was, it was them,and their fantastic Halloween parties.
That was really, really important.
Even today, folks like Ashley Shew,for example, here at Virginia Tech,
I don't know that I wouldhave lasted without her.
I had long phone call with herthis morning, and I'm sure
(43:18):
we'll be texting all day.
She is marvelous, and I owe her a lot.
I think I wouldn't have gotten involvedwith RAMPD, if not for Gaelynn Lea.
The first time I called her,I was so star struck.
I was trying to book her for an event.
It's adorable to think aboutbecause now
she's one of my first calls after the election.
(43:39):
Now it feels like we're comrades in arms,but back then I was terrified of her.
Yeah, there's so many folks.
And I love that I've gotten to a point where - My Open the Gates Gaming team,
I joked to one of my student workerswho is neurodivergent that
every one of my team is neurodivergent.
(44:01):
They just don't all know it yet.
And then it became a gameof trying to spot who knew it.
That's probably a bit of an exaggeration.
But the fact that I have so many peoplewho are different than me, but just
believe me if I need something,and then they're there for it,
that think about my access needs in advance.
(44:23):
I remember the first time I walked intoa room and they turned off the lights
that sometimes set off my migraine, andI didn't even know that they knew that.
Just all the little things,like the fact that I have
chosen family that will be there.
It's just remarkable.
Yeah.
I should stop naming people because I'monly going to miss more and more of them.
(44:46):
Well, thank you so muchfor this time together.
It was a great conversation.
I'm sure we're going to see each otherin another - one project or another.
I hope so.
I'm so excited that you're doingthis because I think ArtsAbly is really
helping connect people and fill this gapthat everybody has talked about,
(45:09):
but nobody's done something about.
I'm really glad that you're doing it.
Thank you for the opportunityand your persistence.
Even as my schedule just kept saying no,I'm glad that you kept saying yes,
so we can make it work.
Thank you.
Yeah, have a great day and talk soon.
Awesome. Thank you. Bye.
(45:29):
Bye.
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