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♪ Opening theme music ♪

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Hello, and welcome to this episode
of ArtsAbly in Conversation.

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My name is Diane Kolin.

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This series presents artists, academics,
and project leaders who dedicate their

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time and energy to a better accessibility
for people with disabilities in the arts.

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You can find more of these conversations
on our website, artsably.com

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which is spelled 
A-R-T-S-A-B-L-Y dot com

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♪ Theme music ♪

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Today, Artsably is in conversation with
Samantha Bassler, who is a musicologist,

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an adjunct professor in New York
City, and a multi-instrumentalist.

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You can find the resources mentioned
by Samantha Bassler during this episode

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on ArtsAbly's website in the blog section.

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Hello, everybody. Welcome to this new 
episode of ArtsAbly in Conversation.

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Today, I am with Samantha
Bassler, who is a musicologist

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living in Brooklyn, New York.

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Samantha, welcome.

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Thank you so much.

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Thank you for spending some time
with us for the conversation.

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I would like to start with
a question about yourself.

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Can you tell a little bit about you?

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Your background?

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I know you're a musician, you're a
teacher, you're a multi-instrumentalist.

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You do lots of different things,
and you're a scholar, also musicologist.

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Can you tell us where all that started?

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Sure.

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I started taking piano at a young age, 
and it was - I just really loved it.

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I connected with it a lot.

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I was born with several autoimmune
diseases, and so I spent

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the early part of my life
in and out of hospitals.

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I think that music was a way for me
to just be alone and connect and not feel

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like I had to perform able bodyedness.

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I understand that now, but at the time,
I felt a lot of responsibility for

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helping my family feel better about me.

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And there was just a lot of concern
about me and about my being sick.

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And so music was a retreat,
as were novels.

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So I spent the early part of my life spending 
a lot of time reading and playing a lot of music.

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And early on, I got really interested 
in a lot of instruments.

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So I had this kind of voracious 
knowledge for playing.

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And like I said,
I started with piano, but I quickly

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wanted to learn guitar, so I did that.

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I wanted to learn violin.

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And my piano teacher at the time,
who was a multi instrumentalist herself

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and a folk musician, she insisted that I
learned mandolin first instead of violin.

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I don't know, it was
some old school thing.

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And so I learned mandolin, and then I
learned violin, and then I learned Banjo.

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And I used to just go to her -

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They would have these jams
that her folk band would come together

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and they would play and improvise.

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And she let me come along
because I was so into all this.

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And so I did that from the age of eight.

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So it started just really into music,
but also really loving scholarship.

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And so that's what drew me
to musicology, because as I got older,

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being in the practice room 6 hours a day
was really isolating and exhausting.

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And I liked that I felt like I had
more control over my academic work,

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or at least that's what I thought.

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And then I went to grad school,
and I started having issues

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with being disabled at grad school.

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That's what got me
into disability studies.

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Because of my disabilities, I feel 
more comfortable being independent.

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I'm an adjunct, and I love teaching,
but I thought a lot about going into

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traditional academia, and it just seems 
like even with accommodations in place,

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it would be too difficult.

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There's something about people
that are sick, that don't look sick,

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the people that are able-bodied,
it really upsets them, 

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and they find it really difficult to work with.

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So that was my ultimate decision
was to continue to be an adjunct.

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And luckily, in New York City,
we have union protections here.

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I have health insurance, and my salary was
recently increased because of the union.

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So I'm not...

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Like most adjuncts, I'm actually making...

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I mean, it's still not the best
wage, but it's not as bad as it could be.

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A lot of adjuncts
in the United States really struggle,

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and they work for really peanuts,
but we have a lot more protection.

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So I decided that that would be better.

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And on the side, I have a lot of
private piano students,

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and private voice students, 
and private string students.

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And that has its own challenges,
but it allows me to be more -

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more in control so that I don't have to...

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I have less - I spend less time up against the 
bureaucratic machine demanding accommodations.

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And that's what really
I find to be very exhausting.

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And that was really the beginning
of my career writing about disability.

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I actually published something while I was
still in grad school about accommodations

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for scholars with invisible illnesses
because it was just -

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I mean when, in 2005,

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people didn't know what to do with me.

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I wasn't even like that. It wasn't really that difficult.

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But what they couldn't grasp was I
would just be sick at a drop of a hat

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because I was diagnosed with lupus
in my 20s, and I had a kidney infection.

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I was hospitalized.

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You know, it was just -

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It was just that they didn't know how 
to provide appropriate accommodations.

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You can provide adaptive
accommodations, 

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you can provide extra time if that's 
what somebody needs.

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But to accommodate a constant illness, 

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we're not really set up for that in academia.

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That's been my passion project since then,
it's trying to find a way forward

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for people that find themselves
to be chronically ill.

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That's me and that's where I came from
and what I'm doing, I guess.

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Yeah, okay.

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It's really important
because I think it's still not very well

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presented in academia,
at least in the musicological world.

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The impact of having
invisible disabilities as a professor,

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as a student, as a music practitioner
or someone who plays regularly.

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I hear a lot of feedback from people
who have invisible disabilities,

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and we still feel that the research
is not enough and that 

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there should be more discussions about that.

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Yeah, I completely agree.

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You were in grad studies where
you published this article.

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It was in 2005?

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No, the article didn't come out 
until 2009, August of 2009,

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but I started my research in 2007.

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So I started -

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Well, I did my first graduate degree
at the University of Oxford,

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where I did a master's degree.

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But that was actually not as hard
to navigate because Oxford

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has such an independent system.

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I don't know if you're familiar with it,
but you basically work on your own.

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You occasionally go to seminars.

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We went once a week.

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But it's not like in the United States,
and I think this is the same in Canada, 

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where you have to take all this coursework 

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and you have to go to class multiple times a week.

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Actually, it was fine.

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And I was dealing with some really serious
stuff at the time, but I was okay, and

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I managed okay without accommodations.

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But then when I went to the United States to do 
my PhD, I started out at Rutgers University.

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And that's where I came
up against the issue.

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The first two years were okay, I managed.

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But in 2007, I was diagnosed with lupus,
and that's when things got really bad.

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And I had to sit for my big doctoral
exams,

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the generalist exams that you take after
two years, or you have to take an exam

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to prove that you know everything about
the history of music,

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and you have to sit for hours, multiple
days, and you have to write by hand.

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So all of this was difficult for me
because I also have rheumatoid arthritis.

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It was just like that exam
is really impossible.

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I can't sit for that long.

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It was with a bunch of people, so it's not
like I could get up and move around.

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I can't write for that long.

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My hands would cramp.

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That's where the challenges
really started.

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That's when I realized
that there weren't any...

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I was the first person,
I guess, who had had an issue.

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Even in 2007, they were
like, What is this?

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I had to get my rheumatologist
to write a letter.

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Then I had to...

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That's when I got introduced
to the whole system of accessibility

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and disability accommodations.

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I found it to just
be just not really helpful.

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Basically, all they could do is say, 
Well, you can take it again, 

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and you can have a private room, 
and you can have more time.

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But none of this really addressed all of 
the systemic problems I was going through 

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because as a disabled person having
to constantly ask for help and the pity.

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Rather than the whole system
to be set up so that it

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was more accessible for everybody.

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And that's the crux.

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So at first, my research just simply
was like, there's got to be other people

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like me who are going through this.

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So I sent out - I did, I interviewed 
a bunch of scholars

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from around the world,
and that's how I I ended up switching

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my PhD and going to the Open University
in England to do my PhD

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because it's a university that was set up,
it was founded in the '70s to be

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accessible for non-traditional students.

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And I met the person who would
be my supervisor through that process

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because he was interested in my research.

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That's interesting,
the access needs part.

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You had to deal with that as a student,
but as a professor, how do you

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accommodate your access needs?

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Oh, no, I still have access needs.

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Yeah, it's absolutely...

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And it's worse now because at least when
you're a student, They're like, 

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You know, you're their student and you're paying 
tuition, and so they're beholden to serve you.

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But despite the Americans
with Disabilities Act, as an employee,

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and the fact that people say things like, 
Oh, we want to hire diverse employees, et cetera.

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They have a limit.

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And they're like, Well, you can only
be sick so many times in the year.

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And if you need more than that, then
we're just going to garnish your wages

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or you have to do makeup classes.

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I mean, it's this whole
complicated bureaucratic thing,

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but the main issue is we don't know how to
accommodate people that are sick a lot.

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I don't mean to deride
my department or anything.

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It's just that even working with
the offices that are set

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to serve people with diverse needs,
this is the only thing they can do.

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They only have what's described in the law 
and what's been negotiated through the contract.

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They have to follow our contract,
which is, of course.

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But the fact that there mustn't be 
disabled people involved in these contracts 

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or this would not be the case.

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I actually had a similar issue with being Jewish.
I wanted to have...

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That's a real problem, being disabled
and Jewish, because my holidays are not

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the same as other people's holidays.

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I'm then sick, but also trying
to be observant.

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So that's like a double whammy.

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So then they really don't know what to do,
because then they're saying things like,

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Oh, well, if you need to miss class
because of your Jewish holiday, well,

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you can just use a sick day.

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Well, no, I need all my sick days.

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So, yeah, the access needs
are still really complicated.

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And not to mention that
it requires a huge amount of work.

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I literally feel like
I have four jobs jobs.

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My main job, my musicianship
jobs, teaching private students,

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and then for my disabilities.

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They each have their own job
because I have to constantly

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document the fact that I've been sick,
despite that I have 41 years of this.

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You can see I have a lot
of feelings about this.

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Yeah, I also understand why.

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As the creator of your own school
with your own private students,

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did it make it easier to manage
your needs and your accommodation,

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I don't know, schedules, hours?

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Yeah, because I can
basically do whatever I want.

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It's my school.

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I actually have a contract
that my students sign every year, 

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and in the contract, it says...

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I just tell them this
because it makes it easier.

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I say, your teacher is disabled.

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We uphold disability rights in this
school, and this person will be sick,

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but we will make up whatever the lessons.

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Of course, this comes with its own
challenges, particularly since COVID.

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It wasn't as difficult before COVID.

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I don't have any research to back this.

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This is something I'm
really interested in.

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But there's this fatigue
surrounding disability and illness,

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particularly illness.

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Now, people just don't want
to deal with like, 

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Oh, well, I'm sick, I can't do this.

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I've also done a lot of reading about - 
there's a lot of problems with

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people - with attendance issues in schools.  

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I think parents,
their teachers are often absent.

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I just don't think that that's the I just
think that ever since COVID,

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our society has really changed in that
now we are less likely to go to work or

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00:16:49,441 --> 00:16:53,979
school when we're sick,

230
00:16:53,979 --> 00:16:58,951
which is good, I think, but we don't have
any fail-safe for how to deal with that.

231
00:16:58,984 --> 00:17:03,822
What do you do when you
have a teacher that is sick?

232
00:17:03,856 --> 00:17:06,592
There's a lot of sick students,
and you have a teacher that's sick.

233
00:17:06,625 --> 00:17:08,660
How do you deal with having substitutes?

234
00:17:08,694 --> 00:17:14,633
There needs to be more systemic
institutional ways of dealing with this.

235
00:17:14,666 --> 00:17:17,436
It filters down to me
as a private teacher.

236
00:17:17,469 --> 00:17:21,473
I think that people are just really tired
of having to accommodate

237
00:17:21,507 --> 00:17:24,676
constantly illness ever since COVID.

238
00:17:24,710 --> 00:17:28,814
There's more and more people that are ill.
But I do...

239
00:17:28,814 --> 00:17:33,952
I mean, obviously, it does give me
as the fact that I own my school,

240
00:17:33,952 --> 00:17:34,987
I can do what I want.

241
00:17:35,020 --> 00:17:36,321
I do have autonomy.

242
00:17:36,355 --> 00:17:40,426
I just have to find ways
of navigating that with these people

243
00:17:40,459 --> 00:17:48,801
that I love and respect,
and yet I need my accommodations.

244
00:17:49,902 --> 00:17:55,407
I want to go back to your research,
your research as a musicologist.

245
00:17:55,441 --> 00:18:01,113
You mentioned that you had to switch to
another university and also change topic.

246
00:18:01,146 --> 00:18:08,420
What's where your different
research fields in this research you did?

247
00:18:08,454 --> 00:18:13,592
My PhD was actually not at all
on anything with disability.

248
00:18:13,625 --> 00:18:15,761
It's about the London Madrigal Society.

249
00:18:15,794 --> 00:18:18,030
Like I said, I'm a Byrd scholar.

250
00:18:18,063 --> 00:18:24,203
I just published a book, co-edited volume
with some friends, but William Byrd.

251
00:18:24,236 --> 00:18:29,107
I was really interested in William Byrd,
and I went to the Open University,

252
00:18:29,141 --> 00:18:36,148
and one of my mentors, Kerry McCarthy,
recommended that I look into this

253
00:18:36,715 --> 00:18:40,452
London Madrigal Society,
which is just this big library

254
00:18:40,486 --> 00:18:44,156
that was donated in 1954
to the British Library.

255
00:18:44,156 --> 00:18:48,427
So like I mentioned before,
the podcast actually started.

256
00:18:48,460 --> 00:18:53,098
I also studied choral music,
so that was a natural fit.

257
00:18:53,132 --> 00:18:59,371
And at the time, I had some people
were recommending that I have a...

258
00:18:59,371 --> 00:19:01,206
For the people that don't
understand disability studies,

259
00:19:01,240 --> 00:19:08,914
I have a serious project,
more like traditional musicology.

260
00:19:08,914 --> 00:19:11,316
But I'm I'm really
excited about that work.

261
00:19:11,350 --> 00:19:15,387
I love it, and I still publish about it.

262
00:19:15,420 --> 00:19:19,491
I did that for my PhD, but
at the same time, I was still

263
00:19:19,525 --> 00:19:22,628
developing my disability research.

264
00:19:22,661 --> 00:19:27,933
I do work in early modern disability,
so I've written a few articles

265
00:19:27,966 --> 00:19:34,640
about how people can see disability
in the early modern era.

266
00:19:34,673 --> 00:19:39,945
That's interdisciplinary. I look at 
literature and music as well.

267
00:19:39,945 --> 00:19:46,585
Then I've continued to do
my more activist work where I try

268
00:19:46,618 --> 00:19:49,821
to bring awareness to accommodations.

269
00:19:49,855 --> 00:19:53,926
I published another article
that was similar to my first article

270
00:19:53,926 --> 00:19:59,398
about scholars with invisible illnesses.

271
00:19:59,431 --> 00:20:02,868
Now, I might be jumping the gun.

272
00:20:02,901 --> 00:20:05,904
I probably am talking too
much, but I'm more interested

273
00:20:05,938 --> 00:20:09,541
in trauma and the intersections
between disability and trauma.

274
00:20:09,575 --> 00:20:11,643
That's where I am at now.

275
00:20:12,444 --> 00:20:15,747
Tell me more about that.
We're never talking too much.

276
00:20:15,747 --> 00:20:17,549
Okay, good.

277
00:20:17,549 --> 00:20:24,122
So, based on my experience growing up disabled
and dealing with all of this, 

278
00:20:24,122 --> 00:20:28,126
I started to become really interested in trauma.

279
00:20:28,160 --> 00:20:32,130
But I also have some other traumas
that happened in my life.

280
00:20:32,164 --> 00:20:35,867
I just was really interested
in seeing what is the relationship

281
00:20:35,867 --> 00:20:38,503
between disability and trauma?
What is medical trauma?

282
00:20:38,503 --> 00:20:42,774
What is - What is chronic trauma?

283
00:20:42,808 --> 00:20:48,580
From chronically living in a society
that is not built for you.

284
00:20:48,614 --> 00:20:52,184
I got involved in trauma studies.

285
00:20:52,217 --> 00:20:54,987
I have a couple of friends
that also read about trauma.

286
00:20:54,987 --> 00:20:58,056
I started reading in trauma studies.

287
00:20:58,090 --> 00:21:03,128
I started with domestic violence,
and then I got into reading about 

288
00:21:03,128 --> 00:21:07,766
medical trauma, like I said, more specifically,
but also the intersections between

289
00:21:07,799 --> 00:21:12,337
disability and mental illness,
because there's a lot of co-curring

290
00:21:12,371 --> 00:21:14,172
disorders there, a lot of people.

291
00:21:14,206 --> 00:21:18,810
That was actually really obvious
in my early research that people that are

292
00:21:18,844 --> 00:21:23,382
disabled or chronically ill often also
have mental illness or mental difference,

293
00:21:23,415 --> 00:21:32,824
where people have a huge amount
of depression, anxiety, even PTSD.

294
00:21:32,858 --> 00:21:35,761
Then I got really
interested in what is PTSD?

295
00:21:35,794 --> 00:21:42,668
Because our understanding of it is all
based on veterans, but It actually

296
00:21:42,701 --> 00:21:47,639
happens to regular people.

297
00:21:48,407 --> 00:21:52,210
Then I got into neurodivergence
from there.

298
00:21:52,244 --> 00:21:56,982
That was actually the topic of 
my AMS (American Musicology Society) paper.

299
00:21:57,015 --> 00:22:04,456
I gave a paper about the intersections
between disability and neurodivergence

300
00:22:04,489 --> 00:22:12,130
and trauma, and I looked at
different examples in popular music.

301
00:22:12,964 --> 00:22:14,366
So...

302
00:22:14,633 --> 00:22:21,573
I would say my research is still
evolving, but I think that in order

303
00:22:21,606 --> 00:22:25,210
to really understand ableism,
we need to understand trauma.

304
00:22:25,243 --> 00:22:28,480
That's where I'm coming from right now.

305
00:22:28,513 --> 00:22:32,050
Yeah, I totally agree.

306
00:22:32,084 --> 00:22:36,588
There is the trauma that goes with
the disability, and there's the trauma

307
00:22:36,621 --> 00:22:40,292
that goes with the person,
which also intersects, right?

308
00:22:40,325 --> 00:22:42,294
Yes, exactly.

309
00:22:42,594 --> 00:22:44,296
That's a fascinating topic.

310
00:22:44,329 --> 00:22:48,333
I also wanted to know a bit more.

311
00:22:48,366 --> 00:22:51,937
You mentioned that you
co-edited the book about Byrd?

312
00:22:51,970 --> 00:22:52,971
Yeah.

313
00:22:53,004 --> 00:22:58,510
It was the anniversary of his death,
the 450th anniversary of his death,

314
00:22:59,211 --> 00:23:02,180
400th anniversary of his death.

315
00:23:02,214 --> 00:23:04,216
He died in 1623.

316
00:23:04,216 --> 00:23:12,691
And so in 2023, we put together a volume
from a lot of different scholars,

317
00:23:12,691 --> 00:23:20,966
looking at his instrumental music, some of his
secular music, his situation at court.

318
00:23:20,999 --> 00:23:22,067
But it was basically...

319
00:23:22,100 --> 00:23:24,970
It's called Byrd in the 21st century.

320
00:23:25,003 --> 00:23:26,905
Byrd Studies in the 21st century.

321
00:23:26,938 --> 00:23:33,578
So it's like an updated, how are people
looking at Byrd now and where

322
00:23:33,612 --> 00:23:41,253
have we come since the '90s,
which was the last edited collection.

323
00:23:41,653 --> 00:23:43,655
That was really fun.

324
00:23:43,655 --> 00:23:48,894
I did that with my colleagues
Katherine Butler at Northumbria

325
00:23:48,894 --> 00:23:51,897
in England and Katie Bank.

326
00:23:51,930 --> 00:23:58,203
Katie Bank put together this really cool
website because part of it is that 

327
00:23:58,203 --> 00:24:04,576
we're trying to also foster awareness
about choral music and try to...

328
00:24:04,576 --> 00:24:07,746
Because there's a large contingency
of public people that are just

329
00:24:07,746 --> 00:24:10,482
the public is interested
in Byrd, particularly in England.

330
00:24:10,515 --> 00:24:19,324
One of the writers in our collection
says that he's the Shakespeare of music.

331
00:24:19,357 --> 00:24:21,159
So we put together T-shirts.

332
00:24:21,193 --> 00:24:22,561
I've got my T-shirt on now.

333
00:24:22,594 --> 00:24:25,864
It's got Byrd, and it says Byrd Nerd.

334
00:24:25,897 --> 00:24:30,335
But spelled B-Y-Y-R-D-N-Y-R-D.

335
00:24:30,368 --> 00:24:31,636
So that's really fun.

336
00:24:31,636 --> 00:24:34,840
And then I have some leggings.

337
00:24:35,707 --> 00:24:41,179
So the whole thing was like, we put this
in a collection, but then Katie and

338
00:24:41,213 --> 00:24:46,051
Katherine, who are both in the UK, they
also did a conference, a mini conference

339
00:24:46,084 --> 00:24:53,558
at Lincoln, where Byrd was the organist
and where he is from originally.

340
00:24:53,592 --> 00:25:02,500
And then also they put together this website 
and this huge general public-facing, 

341
00:25:02,500 --> 00:25:07,372
This is Byrd. This is part of the 
British musical imagination.

342
00:25:07,405 --> 00:25:12,110
That was also something we were
really interested in was the relevancy

343
00:25:12,143 --> 00:25:15,480
of reception studies today.

344
00:25:15,513 --> 00:25:21,186
Why do we care about this dead white guy
from the Renaissance?

345
00:25:21,219 --> 00:25:24,990
That was really exciting.
It was a really fun thing to do.

346
00:25:25,724 --> 00:25:31,863
That's nice. I will publish the links to these 
websites and these projects on ArtsAbly.

347
00:25:31,897 --> 00:25:32,964
Oh, good.

348
00:25:32,998 --> 00:25:34,065
Awesome.

349
00:25:34,099 --> 00:25:38,503
I have a question about -

350
00:25:38,503 --> 00:25:46,545
what does it mean for you to work in the field of 
accessibility in the art, specifically in music?

351
00:25:47,479 --> 00:25:54,719
Well, I mean, mostly,
I would say my main focus now

352
00:25:54,753 --> 00:25:58,056
is accessibility in music education.

353
00:25:58,256 --> 00:26:04,796
I teach at NYU and at Rutgers Newark.

354
00:26:04,796 --> 00:26:10,035
In NYU, I teach a lot of 
oral skills classes.

355
00:26:10,035 --> 00:26:16,474
And oral skills is, for your listeners,
historically is a very...

356
00:26:16,775 --> 00:26:20,345
It can be a very stressful class.

357
00:26:20,345 --> 00:26:22,547
Some students come at it with...

358
00:26:22,580 --> 00:26:28,954
They didn't have a lot of really oral
training for some reason in high school.

359
00:26:28,987 --> 00:26:33,525
Maybe they know a lot about music
theory, music theory, visually

360
00:26:33,558 --> 00:26:38,630
or whatever, but they haven't
connected it so much to listening.

361
00:26:38,630 --> 00:26:41,967
And some people just don't have..

362
00:26:42,000 --> 00:26:43,935
Some people have really amazing ears.

363
00:26:43,935 --> 00:26:46,938
They just have a perfect pitch
or they have nearly perfect pitch.

364
00:26:46,972 --> 00:26:51,676
Other people just haven't had the ability
to really connect, like I said, their

365
00:26:51,710 --> 00:26:56,615
intellect and what they think about music
intellectually with how they hear it.

366
00:26:56,648 --> 00:27:00,018
I find that one of the first things
I noticed about oral skills 

367
00:27:00,018 --> 00:27:02,754
is that it creates a lot of 
anxiety for my students.

368
00:27:02,988 --> 00:27:07,692
Even able-bodied students,
even performers, people that

369
00:27:07,726 --> 00:27:11,529
perform all the time, they don't
want get up in front of a room

370
00:27:11,563 --> 00:27:16,634
of their peers and sing a solfege.

371
00:27:16,634 --> 00:27:21,473
So I started to become really interested
in this because it seems to be,

372
00:27:21,473 --> 00:27:25,010
even for the able-bodied people, inaccessible.

373
00:27:25,276 --> 00:27:29,147
Then when I started to do my research
on neurodivergence, I realized that

374
00:27:29,147 --> 00:27:33,985
for obvious reasons. I'm a 
late-diagnosed autistic person, and 

375
00:27:33,985 --> 00:27:37,589
I also have ADHD, also late-diagnosed.

376
00:27:37,622 --> 00:27:41,359
I realized that there's a lot
of sensory issues 

377
00:27:41,359 --> 00:27:48,867
so, for a lot of wide-ranging conditions.

378
00:27:48,900 --> 00:27:54,706
People who have autism, obviously,
have issues with sensory.

379
00:27:54,706 --> 00:27:59,377
They have sensory overload,
sometimes it's explained,

380
00:27:59,411 --> 00:28:01,746
but even people who have migraines.

381
00:28:01,746 --> 00:28:04,816
Also how those kinds of...

382
00:28:04,849 --> 00:28:10,488
When that happens, that will affect
their performance in their oral skill classes, 

383
00:28:10,488 --> 00:28:15,693
but it doesn't actually describe
their ability level in the class.

384
00:28:16,161 --> 00:28:21,933
My main focus right now, I'm working on a
chapter for a book on music and pedagogy

385
00:28:21,966 --> 00:28:24,569
and trauma, and it's all about this.

386
00:28:24,602 --> 00:28:28,773
It's about how we can create a more
accessible oral skills class that takes

387
00:28:28,807 --> 00:28:32,477
into account without penalizing people.

388
00:28:32,510 --> 00:28:36,281
Because I was working with students
who were just not going to class because

389
00:28:36,314 --> 00:28:41,052
they had so much anxiety around it,
because they couldn't control

390
00:28:41,086 --> 00:28:45,423
their disabilities
and how they might manifest 

391
00:28:45,423 --> 00:28:48,660
at any given point during 
the oral skills class.

392
00:28:49,294 --> 00:28:53,565
Then just generally,
I do a lot of my syllabus -

393
00:28:53,598 --> 00:28:58,770
My syllabi are very much organized
around universal design in learning,

394
00:28:58,770 --> 00:29:01,973
so they're set up so that 

395
00:29:01,973 --> 00:29:05,743
my students have accommodations, 
but they don't really need them in my classes.

396
00:29:06,311 --> 00:29:10,448
They're just set up to be accommodating.

397
00:29:10,482 --> 00:29:12,817
Does that answer your question?

398
00:29:12,851 --> 00:29:13,985
Oh, yeah, definitely.

399
00:29:13,985 --> 00:29:19,591
It's also this last point that
you talked about, it's really important.

400
00:29:19,591 --> 00:29:29,334
If you build your syllabus with the
universal design in learning in mind,

401
00:29:29,367 --> 00:29:35,273
then we don't need accommodations anymore
in the classical sense or term

402
00:29:35,306 --> 00:29:38,576
of accommodation in universities.

403
00:29:38,610 --> 00:29:44,315
That's a good lesson, a good lesson
for some teachers who are still following

404
00:29:44,349 --> 00:29:50,288
a very rigorous model for their courses.

405
00:29:50,321 --> 00:29:56,761
Yeah, because I know that in disability
studies, when we get down to the real -

406
00:29:57,195 --> 00:30:02,467
the really intellectualizing critical
disability studies, we have some...

407
00:30:02,634 --> 00:30:04,636
I've talked to my colleagues
about criticisms

408
00:30:04,636 --> 00:30:08,740
of the social model of disability.

409
00:30:08,773 --> 00:30:13,811
But generally speaking,
I find that this idea that

410
00:30:13,811 --> 00:30:20,852
to locate the problem in the person,
and that's really what accommodations do.

411
00:30:20,885 --> 00:30:23,321
They locate the problem
in the disabled person.

412
00:30:23,354 --> 00:30:26,457
So it really is the medical
model of disability.

413
00:30:26,491 --> 00:30:33,131
And so, of course, it doesn't serve
because each person is an individual.

414
00:30:33,164 --> 00:30:40,805
And how your disability manifestsests
is going to be so different.

415
00:30:40,838 --> 00:30:44,275
And the other thing is that these
accommodations,

416
00:30:44,275 --> 00:30:48,913
so many times the people working at these
offices or even the practitioners,

417
00:30:48,947 --> 00:30:54,652
like the doctors,
they're going by based on medical texts

418
00:30:54,686 --> 00:30:58,289
or intellectual understanding,
but they're not disabled and they don't

419
00:30:58,323 --> 00:31:03,261
really know how the disability
manifestsates in each individual person.

420
00:31:03,294 --> 00:31:09,067
And the focus is often on on access
needs, really obvious access needs,

421
00:31:09,100 --> 00:31:14,873
like physical access needs,
as opposed to emotional, intellectual,

422
00:31:14,906 --> 00:31:17,442
developmental access needs.

423
00:31:17,675 --> 00:31:22,947
And so that's why these cookie cutter 
accommodations that people

424
00:31:22,981 --> 00:31:29,454
reach for, extra time or even delays.

425
00:31:29,487 --> 00:31:32,957
Even if you have an accommodation
that you can turn work in late,

426
00:31:32,991 --> 00:31:38,129
there's always an endpoint
where that has to stop 

427
00:31:38,129 --> 00:31:41,199
because you have to fit in with the medical model.

428
00:31:41,232 --> 00:31:44,936
That's my real problem with it,
and that's how I started to really

429
00:31:44,969 --> 00:31:46,671
change my thinking.

430
00:31:46,771 --> 00:31:49,407
I see, yeah.

431
00:31:49,440 --> 00:31:50,775
Okay, thank you.

432
00:31:50,775 --> 00:31:54,812
I have a last question
before we conclude this conversation.

433
00:31:54,846 --> 00:32:02,453
It's about people who have worked with
you, influenced you, maybe inspired you,

434
00:32:02,453 --> 00:32:05,456
maybe guided you in your career.

435
00:32:05,490 --> 00:32:11,696
If you have one of these people
to think of, who would it be and why?

436
00:32:11,796 --> 00:32:15,933
Definitely Joe Straus from CUNY.

437
00:32:15,967 --> 00:32:20,438
He's the patriarch of music
and disability studies.

438
00:32:20,471 --> 00:32:22,807
He actually came to...

439
00:32:22,840 --> 00:32:28,713
I was involved
in the musicology Society at Rutgers

440
00:32:28,746 --> 00:32:32,984
when I was doing my degree there,
Rutgers University in New Brunswick.

441
00:32:32,984 --> 00:32:34,686
He was one of our invited speakers.

442
00:32:34,719 --> 00:32:35,887
We invited a bunch of...

443
00:32:35,920 --> 00:32:40,959
We got this musicology colloquia off the
ground, and we started inviting people.

444
00:32:40,992 --> 00:32:47,465
My friend Justin Burton, who was also
doing a PhD there, invited Joe Straus.

445
00:32:47,465 --> 00:32:51,135
I didn't know anything about
disability studies at the time.

446
00:32:51,169 --> 00:32:55,306
He gave his presentation, which
I think was, I don't really remember.

447
00:32:55,340 --> 00:32:58,109
He could probably correct me.

448
00:32:58,109 --> 00:33:01,980
I think it was about one of his presentations 
on modernism and disability.

449
00:33:01,980 --> 00:33:03,214
You know what it was?

450
00:33:03,214 --> 00:33:05,149
It was late style.

451
00:33:05,183 --> 00:33:07,785
He started talking about
critical disability studies,

452
00:33:07,819 --> 00:33:09,687
and he tells this story.

453
00:33:09,721 --> 00:33:14,258
He could see the light go on in my brain.

454
00:33:14,292 --> 00:33:17,795
I was just like, Whoa, what?

455
00:33:17,795 --> 00:33:19,864
Then I raised my hand.

456
00:33:19,897 --> 00:33:26,804
I remember raising my hand and saying,
So invisible illness is a disability,

457
00:33:26,838 --> 00:33:28,339
and it needs to be accommodated.

458
00:33:28,373 --> 00:33:31,175
And he was like, Yeah.

459
00:33:31,509 --> 00:33:34,946
So it's his fault.

460
00:33:35,513 --> 00:33:37,982
It's his fault.

461
00:33:38,016 --> 00:33:40,385
It's his fault for many of us, actually.

462
00:33:40,385 --> 00:33:42,353
I know.
Yeah.

463
00:33:42,387 --> 00:33:44,088
So he started the whole thing.

464
00:33:44,122 --> 00:33:49,761
And ever since, he's really
been a champion for me,

465
00:33:49,761 --> 00:33:50,995
and he's been very supportive.

466
00:33:51,028 --> 00:33:55,433
And actually now I'm also very interested
because he's been working on music

467
00:33:55,466 --> 00:33:59,203
in aging, in ageism and age studies.

468
00:33:59,237 --> 00:34:03,574
And now that's also a new interest of mine
because obviously the parallels between

469
00:34:03,574 --> 00:34:07,345
ageism and ableism are so apparent to me.

470
00:34:07,378 --> 00:34:09,547
And now I'm older, right?

471
00:34:09,580 --> 00:34:13,251
I'm in my 40s, I start to actually think
about getting older now 

472
00:34:13,251 --> 00:34:18,022
and what it would be like to age 
in this disabled body.

473
00:34:18,056 --> 00:34:21,325
I think sometimes people
that aren't chronically ill,

474
00:34:21,359 --> 00:34:24,996
they just take for granted aging.

475
00:34:24,996 --> 00:34:28,232
I've had friends say to me,
Oh, people are living longer now.

476
00:34:28,266 --> 00:34:31,702
We should really assume we're going
to live into our hundreds.

477
00:34:31,736 --> 00:34:34,872
I was like, What?
I mean, good luck.

478
00:34:36,207 --> 00:34:38,776
I'll be happy to live to 80, maybe.

479
00:34:38,810 --> 00:34:45,850
I'm fine with that. But anyway,
it's just, yeah, he really -

480
00:34:45,850 --> 00:34:48,586
He's a champion, like you said, for all of us.

481
00:34:49,520 --> 00:34:51,556
Well, thank you so much
for this conversation 

482
00:34:51,556 --> 00:34:55,526
and for taking the time to 
answer to these questions.

483
00:34:55,827 --> 00:34:59,197
and all the best with all your 

484
00:34:59,197 --> 00:35:02,333
current projects and everything that is 
happening in your life right now.

485
00:35:02,333 --> 00:35:05,303
Great. Thank you so much.
Happy to be here.

486
00:35:05,336 --> 00:35:07,505
Thank you.
Have a great day.

487
00:35:07,505 --> 00:35:08,539
You too.

488
00:35:08,539 --> 00:35:09,574
Bye.

489
00:35:10,475 --> 00:35:15,613
♪ Closing theme music ♪