Exploring (Dis)Ability and Connecting with the Arts with Jesse Rathgeber
In this interview with Jesse Rathgeber, we discuss what educators should know about (dis)ability culture and research, person-first language vs identity-first language, suggestions for combating ableism through anti-ableist practices, how the arts and CS can come together and learn from each other (great for sharing with arts educators who might be interested in CS), and much more.
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Welcome back to another episode of the
CSK8 podcast my name is jared o'leary
this podcast includes solo episodes
where i unpack scholarship in relation
to computer science education
and episodes where i interview a guest
or multiple guests
today's episode is an interview with
jesse rafgeber who is somebody that i
met in grad school and have been
friends and colleagues with ever since
today's episode centers around two main
ideas one is on disability research and
culture and then the other is on
the potential for connecting with the
arts in cs education
so in this podcast we discuss what
educators can know about disability
culture and research
we discuss what person first language is
in comparison to identity first language
we also discuss some suggestions for
combating ableism
through anti-ableist practices and how
the arts and cs can come together and
learn from each other so this episode is
not only great for cs educators in terms
of learning more about disability
culture and research but it's also great
for sharing with
arts educators who might be interested
in learning more about
cs and the potential for its connections
with the arts
now we mentioned many different
publications podcasts and scholars
throughout this particular episode and i
include direct links to all of those
in the show notes which you can find by
clicking the link in the app that you're
listening to the song or by simply going
to jaredoleary.com which has
nearly 100 podcast episodes and hundreds
of
resources relevant to cs educators and
researchers
including a link to bootuppd.org which
is where i create
a 100 free coding curriculum for scratch
and scratch jr
one quick disclaimer before we begin
jesse mentions the product sound wave
but actually meant to mention
sound beam so just fyi that's the actual
name of it it's sound beam
with all that being said we will now
begin with an introduction by jessie i'm
jesse rathgiver
i'm an assistant professor at augustana
college in rock island illinois
i specifically do music education
classes around general music
i also have an assessment class i'm
originally from central illinois so i'm
back here at home i used to be at james
madison university
where i helped co-found the center for
inclusive music engagement
prior to that i was at arizona state as
a doc student with
jared o'leary here so so on your website
you describe yourself as a maker
educator researcher with like a hyphen
in between
each of those i'm curious can you tell
me the story behind why you describe
yourself that way
the maker aspect or at least the label
came probably around from
time of being in arizona right with the
group of us who were there at the time
who were all tinkerers right that's what
i would have called myself beforehand
from a young age i tinkered i just
played around with stuff i
opened up toys and put them back
together my grandfather had a
woodworking shop and so i
learned how to make stuff there and play
around with things
i remember actually was going and
searching for this but i remember when
we first got our computer in 95 or 96
it was a windows machine as almost
everyone who was getting a twitter at
the time
and i found out about sound editor and
so i remember as
like a sixth grader playing around with
this cheap microphone i bought at
officemax
i'm saying all these things that don't
exist now it makes me feel super old
i remember like singing into it and it
recording and you could
adjust a couple different things on
sound editor but you could also
incorporate
other tracks and i just got a cd player
at the same time and all i had was the
pocahontas soundtrack
and the forrest gump soundtrack and so i
made a whole bunch of weird what would
be called not like remixes
using that and then i remember redoing a
lot of them when
audacity first came out before it was a
you know fishing
spyware application as it is now and
living writing songs
it pretty much any chance to create was
always where i
did better at than other stuff i was
never very good at
setting and recreating stuff for someone
who became a music teacher
i was had to been the bane of the
existence of my banded choir directors
because i just had so little interest in
recreating stuff
i'd rather write my own song than
anything like that so when i
went into gone to college and went on to
teaching i was constantly creating and
tinkering with stuff when especially
when i was an elementary music teacher
i was building set design stuffs with
students i was
eventually creating concerts with the
students
so when i came to asu we're all studying
about maker
culture and what it meant to be a maker
that word finally like made sense to me
it made sense in a way that
there was a movement there were other
people who had that i could never really
explain it to
my friends you know the things i was
really interested in wasn't necessarily
you know x y and z it was kind of
creating messing around
things that would fit under maker and i
think that like that aspect of
my life of that kind of make something
new or
i'm too you know in a pre-collage kind
of sense like draw from all the things
you have
has just become like central to me as a
teacher me as a researcher i mean my
scholarship
looks like a weird mix between
phenomenology
case study narrative work sometimes i do
a lot of mixed methods stuff my teaching
is kind of antagonistic to method
and more about creating pedagogy that is
in line with
who you are and who the students are
that you're working with and so i just
think that those terms like i've always
seen myself as a teacher
educator facilitator sometimes i flip
between those words
depending on how i'm feeling in the
moment the needs of the space
the aspect of being a scholar or
researcher has just become
quintessential
part of who i have been i mean i write
but i do that
because i'm interested i've always been
kind of curious anyway it's almost as if
like maker would fit all those two other
things
quite easily in my mind because to be a
teacher you
often need to create you often need to
play around with and mess with what
already exists
and to be a scholar it's the same way i
mean the scholars that i
respect and that i constantly go back to
have that same kind of zeal of
playfulness and
zeal of combining new ideas in different
ways
yeah very lifelong kindergarten approach
mitch resnick and
very much so yeah i'm curious like so
you actually started
dabbling in the intersection of the arts
and cs before i ever even considered it
what made you go huh i want to try out
scratch
and create something that's music
related there's another thing that
happened kind of in early doctoral work
and i was antagonistic to it
to be completely honest when you know
one of our mutual friends isaac nick
moore and also ryan bledsoe
showed me scratch and they were building
video games i was like
okay and
at that time i could have grappled the
idea of okay then we're gonna make a
soundtrack for it
but my brain wasn't quite ready with the
notion that no this by itself could be a
device a musical experience
i had volunteered for three years at
higher octave healing in the rock band
program
and we used a lot of colors to signify
different fret positions the guitars and
keys had stickers on them
and i realized that i was having a
really really hard time
saying the colors correctly and playing
and also helping because i was also
playing guitar and so
i went home one night and it's like i
bet i could make a controller
that i could like just program which
colors it is and just move
through and i did i made it out of like
a spongy board
like a knee plate for a garden and big
washers
and i took it in and that's how i did it
for a while and then i started
getting really interested in like well
wonder if i could create something in
scratch that
was interactive with the video aspect of
it because i'd been really interested in
not only leap motions a big sound wave
where you you know you can
move your hand through a field and it'll
play different kinds of things well
sound waves are really expensive
i mean like thousands of dollars at
least when i was looking into it last
and i was like i wonder if i could
create something that was a facsimile of
that
that would work on scratch and so i
created something that was just like
i think i called it sound field
generator that was just random sounds
that would play over each other and then
learning that oh well i could easily
have
like students or community members
change the sounds
i think the thing that really bit me
that got me super
into all of this was when i combined
kind of
the notion of having something that's
interactive with the community and also
something that's tangible like something
you can hold
was when a bunch of us created like a
musical potluck
okay i remember that yeah we connected
a bunch of spoons and pie plates to a
makey makey and then hooked it up to
ableton and made different sounds and so
when people were scooping up like
strawberries out in front of the union
they could hear these sounds that
was probably like the big aha moment for
me of like this actually can be a part
of who i
am and who you know contemporary
students might want to do because
there's this notion of like
playing with this stuff it's not
necessarily learning how to use making
me
or learning how to use scratch and
learning how to use ableton
for the purpose of learning those things
but it is to do something cool with it
do something that made me and made
others feel part of the musical
experience i mean then just from there
it moved on to
adaptive instruments that's become kind
of a core part of me as a teacher is
we often do a lot of projects around
creating adaptive instruments either
via case studies versus my least
favorite way of doing it or with actual
people that which is my absolute
favorite way of doing it
but because the coding the physical
making of stuff
becomes this labor of empathy rather
than this
intellectual pursuit of coding you learn
how to code through
this trial through this challenge i
think your answer to that question
is something that cs educators should
share with their arts colleagues
it's there's a lot of great nuggets in
there that
i think would be very beneficial for
like the
not just music education but the arts as
a whole to see oh this is how somebody
who's from the arts
applied and explored et cetera but i'm
curious in your explorations
of like these intersections and whatnot
was there anything that surprised you or
stood out it was unexpected well i mean
there's always lots of things unexpected
right i mean
just like the pragmatics of day-to-day
playing with stuff and like
dealing with changing platforms
especially when you make tutorials for
them
and stuff like that but the things that
really stand out to me
have been buy-in or push back
to be completely honest is there's a
buy-in when you show people
things that looked really far outside of
their normal
day-to-day lives right so either people
tend to i mean there's there's lots of
perspectives but the two perspectives
that always stick out to me are the ones
who
want to buy into it immediately and even
if they don't grasp
why they want to buy into it they just
want to try it out which that's cool but
it's also problematic right like you
have to think about
does this fit within the needs of the
students there does it fit within the
needs of you
how do you tinker with it or the people
who are just all and out resistant
and i can see myself having maybe even
embody that as
even someone who would have been
considered more progressive as a music
teacher
had i experienced any of this stuff
around coding
around computer science integrated
work earlier i don't know how i would
have grappled with it right because
it does like the stuff that i've done
has really dismantled
in my mind any sense of hierarchy of
what music is supposed to sound like
because it's not necessarily in about
the end product
as much as this is the doing of it so
like to me it's less about
recording someone performing on one of
these things that we've created
as it is someone actually creating
something and if it sounds
bad to me i don't really care because if
it makes sense
to that person and it's meaningful to
that person that's pretty awesome it's a
great place to start
so yeah those two perspectives are
always interesting to me then you have
people who do buy into it but do them
really
like the thoughtful work like what i
tend to feel like i here i am i'm making
the things that i would do sound like
they're the right things
they're not but the thing that makes
sense like that being more
thoughtful and critical so i've got a
colleague named abby blair
and abby saw one of the earlier tech
based things that i had done
at illinois music educators conference
and abby is a teacher up in the chicago
suburbs and
she immediately wanted to apply some of
these things and she
was really critical and thoughtful about
how she integrated she was a very like
dwarf inspired but not like not or
beholdened
classroom and she started finding ways
to play around with making makeys and
coding
in her classrooms and she would share
things with me according to him i would
try something new she'd be like well
what about this and she'd always add to
it finding people who do that thing
that the more critical kind of thing is
interesting and i'm always
stoked about that because that adds a
back and forth
of we created something have here can i
show you
mine instead of the people who just are
just straight adopters again which is it
oftentimes you adopt something you
figure it out and
then you can unpack it but like yeah
that's cool like i showed you that two
years ago
like i'd love to see something different
show me how you're playing around with
it maybe that's judgey on my part
it's definitely one of those things like
that can be tricky to respond to
because you don't want to just be
flippant just like people who are really
anti-adopting things other things that
stand out to me
the collaborations that these things
open up so i was lucky enough that
my second or third year at country
meadows elementary school
in long grove illinois which is where i
had taught before i did my doctoral work
we had a brand new tech coach and we
were starting to move away from having a
tech teacher into the coach position
and i had this wonderful guy named bob
handrahan who is now a principal
actually in the same district
and bob hung out in my room a lot when
people weren't asking for
coaching he would just hang out in my
room in fact the drum sets that are
still
in that room i think in that classroom
were his he donated them
and bob would like i would try to figure
something out and he'd be like hold on
one second i think i can figure this out
we had once had these students who
and this is going a little bit further
away into just tech in general but like
we're doing recorders right and many
people use
recorder karate or other kinds of
behavioralist things
and i did as well but i made it so that
it was unending belts
so people could just keep pushing and i
found that there's a lot less
competition but
students didn't want to just test in
class they wanted to be able to send us
stuff
which in 2011 that wasn't easy
and so i remember bob he was in there he
found out about 20 minutes after the
student
suggested it we'd figured out a way of
doing it we did an 80s concert
and the art teacher really wanted to do
something in the background of the
concert like some backgrounds that were
not just like
picture backgrounds but like
movement-based backgrounds and so she
decided she was going to do something
with is it keith herring
the artist from the 80s who did all the
dance
kind of form people 80s and early 90s so
bob found a way to have them animate
these kinds of structures and we created
them in the background
and so the kids were in art class
learning basic
computer animation effects that they
were connecting to the music
stuff that we were doing and then when
the parents saw it it was just a
it was this aha but like because bob was
there
bob made a connection between myself and
the art teacher
to do something new that we would never
have done and i think that that's what i
found consistently
about exploring the kind of
intersections of
art and technology or specifically
computer science it just opens up a lot
of
opportunities like a former colleague at
jmu that he and i and dave stringham are
trying to
figure out a way of facilitating ukulele
jams around the country asynchronously
in allowing for social connections
again something that wouldn't have
happened had i just stayed really well
within my boundaries
those are the things that probably stand
out the most to me so i've
only dabbled a little bit in like
disabilities research and whatnot i'm
curious
because you have a much more extensive
background and experience with it
what do you wish more people understood
about disability research
that it just like disability itself and
the experiences of disabled people slash
people with disabilities
is way more complicated than that they
probably assume to that kind of end
like disability studies based research
is kind of where
most of my stuff resides is not about
special education and it's not about
finding specific
treatments or specific adaptations based
on specific diagnoses
at least the stuff that i'm doing is a
lot more about what is the experience of
being disabled
to be in this identity and lived
experience place what does it mean
to disable how do we create disabling
structures and institutions and
practices that we may not
intentionally want to be harmful
that notion that things are way more
complex i think it's probably the most
important thing because like
i think about diagnosis so many times
especially music educators i can only
speak from that because of the students
and the folks in the world that i tend
to speak to can get really wrapped up in
worrying about the diagnosis rather than
meeting the child
because the sense of need for
medicalized expertise
well this person has down syndrome so i
need to know all the things about
down syndrome that's a part of some of
this stuff but like
what dylan is doing in class and who
dylan is wanting to be and their and
dylan's goals matter
almost actually i would easily say more
they matter significantly more than that
diagnosis
now if that diagnosis matters to dylan
then you need to understand the identity
aspect of it
but just knowing that children with down
syndrome
tend to have on larger hearts that
doesn't do anything for you and it can
get people
to move away from meeting people it can
cause teachers to see
cases rather than people cases that they
need to treat
whether it be treat through remediation
or accommodations it can just really
quickly dissolve
the real teacher-student relationship
or just human-human relationship that in
a classroom i think is essential to
kind of the liberatory that martin
erbach had talked about and so many of
the other people you've had on here have
talked about
that communication that relationship i
think that sometimes
a misunderstanding of the complexity of
disability and her over reliance on
medicalized expertise
can be the biggest impediment to having
a real relationship
and everything for me falls from that
relationship
yeah that actually i just had an aha
moment
where i don't know what a few years ago
you wrote a paper when you were
describing the participants in it it was
the most beautiful narrative
i've ever heard ever read in any paper
and i'm not just
giving you that praise because you're
here like i genuinely mean that like
when i read through it i was like wow
they didn't just describe like
and bob who has down syndrome it was and
bob who is really interested in sports
and loves to
like saying rock music as loud as
possible like it was a very
rich description and it was very
humanizing which is often
like the opposite of what tends to
happen in disability research is very
dehumanizing
which when you first started talking the
way that you phrased it was like
disabled person slash people with
disabilities like
you were very careful with your phrasing
of that i'm wondering if you could talk
a little bit about
that debate about the language around
what i just mentioned certainly well
number one thank you that really means a
lot to hear that
finding ways in general to describe
people
is way harder than i think anyone ever
discusses
yeah right i'm surprised i didn't say
this when i was describing myself but
like i'm bipolar
and so like that's a pretty important
part of my identity
but that doesn't mean that i know all
disabilities right and so like i'm
describing people whose
lived experiences embodiment and
mindment
are not mine so i can't know how they
would say i can ask them which is what i
tend to do
and i tend to try to replicate that as
much as possible but to try to parse out
the complexity of it is really important
now when i use disabled person persons
with disabilities
that's kind of my somewhat non-committal
way of dealing with the
person first versus identity first kind
of controversy
so the person first language which is
now like the
main language in educational law and
educational policy
is the notion of like it's a person with
a disability so the person is always
first
this thing falls through when you start
using any other identity category
because we would never say like a person
with
female i mean you could say a person
with female genitalia that's really
strange
you know what why would you need to know
that or a person with blackness or a
person with african-american heritage
like
you don't often hear those kinds of
things so that falls apart in that and
that person first was actually
originally suggested because people were
using a lot of other really dehumanizing
language right like handicapped cripples
and they were using these things as
nouns instead of descriptors
so it became really common in fact
somewhere in my dissertation i
found one of the professional journals
that said like no we're going to use
this language from now on
the issue is is that not everyone buys
into that language
because many people in the disability
studies or disability community
as like a body of political ideology
political body
say well but that's kind of really like
i don't carry my bipolar disorder around
in a bag with me
like it's in me it's me i can't parse
that out
and so a lot of them especially moving
out of the disability civil rights
movement
really embrace the notion of identity
based
so disabled i'm a disabled person and
from a disability studies perspective
that means i'm a person who lives within
a
state where my body and mind somehow do
not fit within the social expectations
of who i am and because of that
not who i am but who people are and
because of that i am disabled because
the
social setting is not set up for me it
keeps me out
when i was working on one of my first
publications actually
the chapter i wrote with adam bell we
were trying to deal with this
and like i really uncomfortable about
telling anyone
how they need to identify i tend to use
identity first
when i'm talking about myself or when
i'm talking about theoretical
things i tend to use person first
slightly when i'm talking educationally
although the students do know that i
tend to bring this up this notion of
the parsing out of the different verbage
but really i default to whatever the
person actually wants to be called
because it's so much easier just to ask
them yeah
so i tend to try to be really careful at
least once or twice to use this
big complex thing because it does
require people to slow down their
thinking
and again if we think about disability
as more complex it should require more
thinking and so
i remember the first editors were first
reading that adam and i
they're like well this is really long
and complex to hit even when you just
use the letters and it's like that's the
point
and i guess it's just the notion that
again things are more complex than we
realize
there isn't one settled term and it's
the worst thing that any of us can do
any person is to when someone is telling
you
how they want to be identified is to go
well that's not how you say that
it's different when you make a mistake
right it's different when you use a
different term because
you messed up and you correct those
mistakes but it's completely different
like if you go on
twitter there are sometimes
conversations especially in the hashtag
actually autistic community where there
are people
and there are scholars who are
complaining to these people who have
very specific lived experiences that
they do not get to name their experience
and that to me is like
number one hypocrisy number two it is a
definition of oppressiveness that is
your worldview doesn't matter
mine does my power matters my
perspective matters my way of
identifying
you matters my voice matters my
embodiment matters my
mind matters i consistently try to
remind students
and anyone i work with that this thing's
way more complex and so the first thing
you should do is find out what people
actually want to be called
it's become actually a lot easier that
conversation is less stressful since
people have been using pronouns and
their identification
because pronoun identification has
forced people to slow down
and force them to not center their
subjectivity
and specifically you know any kind of
notion of binary subjectivity
so now students are like oh yeah why
wouldn't you just ask them
but like had you told me that as an
undergrad i would have been like but
what am i supposed to say before then
you know such a concern of what do i say
right now
and so much of it is things are way more
complex than you realize
so how about you get to know the person
before you make those decisions and
you're just always going to have to wait
your comfort of being prepared does not
trump
the personhood of the people that you're
working with and for a very concrete
like an example of
like person first would be like a child
with autism as opposed to saying an
autistic child etc and what i
am wondering out loud is there might be
some people who would be listening
like yeah but the intent is what matters
and what i'm trying to just
say is i'm trying to identify somebody
you're over analyzing language
which yes i do that like that was my
dissertation
you also do that you you think very hard
about your language
but there are terms within disability
scholarship in particular that are
important to know like tiny timing
or supercrip if you're unfamiliar with
those you should look them up but
there's also the
hidden unconscious biases and
problems or isms that come with the
things that
are said but are unsaid or implied
and so i'm curious if you can kind of
unpack the label for that which is
ableism
and what the opposite of that is with
anti-ableism or
non-us listeners disableism is often
used in the uk specifically in other
european nations
they mean similar things but not exactly
the same but
their difference would require way more
than this podcast
but in some respects you can't
understand them similarly so simi linton
who in 1998 wrote a really
a monumental book called claiming
disability talks a lot about disabled
identity
and also ableism and linton says ableism
includes the idea that a person's
abilities or characteristics
are determined by disability or that
people with disabilities
as a group are inferior to non-disabled
persons
so just like in race and racism
often when we think about racism we
think about the notion of white
supremacy based
racism which is really the thing that
we're talking about right where you know
one positionality is seen as higher than
another right so like
being white versus being black in
disability it's similar
it's the non-disabled person being held
above the disabled person
and this is a nice language thing like i
tend to use non-disabled because i don't
like the word typical
i don't like the words normal and i like
to center marginalized
positions as much as possible and so
saying non-disabled
in this situation is linton's way of
pushing the center into disability and
making
people who are often seen as being on
the inside
become outsiders in this conversation
another really great thing i think this
comes from campbell
said from the moment a child is born she
emerges into a world that she receives
messages
that to be disabled is to be less than a
world where disability may be tolerated
but in the final instance it is
inherently negative we
are all regardless of our subject
positions shaped
and formed by the politics of ableism
this thing impacts all of us and
there's a notion of internalized ableism
which is often
seen in conversations with disabled folk
with disabilities who
are almost policing each other or
suggesting very non-disabled
centric ideas onto others the notion
that oh you know what if you can't do it
you shouldn't ask the world to
accommodate you because the world's not
going to do that so just get the deal
with your own position
even when the accommodation is like what
if we had ramps
what if we had asl interpreters like
those are easy enough
solutions that these shouldn't be
discussions but like so
if ableism is this negation of
disability and personhood of
folk with disabilities anti-ableism is
kind of a it's relatively newish i know
that
there's only a few references to this
specific word formation in the
literature
it's essentially an intentional
act of dismantling ableism it is not
being inclusive in fact in disability
circles the notion of being inclusive
has often been seen as a good enough
stance but really what disabled folk and
people with disabilities often want are
not just inclusion but full
actualization and that might require
dismantling policies or physical
situations or
practices that put the non-disabled
person as central
and no other bodies and minds as being
possible what's important though is that
anti-ableism just like
many of these antis like anti-racism
does not swap the marginalized category
with the powered category
that's not the intent of any of this
stuff it's meant to
say that all these ways of being and
perceiving and
doing are valid are valued
and can add to the complexity of human
experience
and non-human experience so like for me
at least in my work i've used a lot of
notions of by martin buber
philosopher one of his not necessarily
students but someone writing alongside
his stuff named kramer
who talked about the inclusive mindset
which is this notion of
knowing people so well that their
personhood is almost manifest in your
consciousness so that you can really
draw on
complex thoughts rather than just your
own assumptions
and so some of the things that i
borrowed from cramer through my
dissertation talked about as being
core of anti-ableist is this notion of
building relationships
first right i would never tell someone
to not look at
a iep but i can say that sometimes
looking at an iep and only concerning
the iep and never really developing a
relationship with that person before
making plans
is really problematic because it does
dehumanize and it loses their chance to
be part of
your consciousness too this notion of
concrete representation
really having a deep sense of who we are
and a deep sense of who people can be
out in the community so this could be
just getting to know people really well
in their eccentricities it could be
representing lots of things in your
classroom so if you're a
music teacher not just picking
non-disabled folk
to highlight also encouraging
reciprocity this notion that
we should have reciprocal relationships
all of us it shouldn't just be
a service or a caring to relationship a
one directional thing we should find
ways of learning and drawing from each
other
creating sustaining openness so that we
can actually say when problems are
bothering us like
in some respects we often draw on
other disability like like medicalized
expertise
because we either don't know how to
communicate with people
or we feel really uncomfortable
communicating but this suggests that we
need to kind of lose those
feelings of discomfort to be actually
open so that
students can say hold on this is
actually really tough for me and i can't
do this now
because that might not be fully realized
in an iep
right or hold on i don't want to do that
like one of the things that students
here at augie caught on when we had our
disability
studies in music education symposium was
the notion that
accommodations are great but if they're
forced upon someone
they're no more empowering than doing
nothing sometimes
and so having this openness of being
able to say no or yes
in my dissertation work the number one
theme
of so many of the participants was i
just want to be able to self-accommodate
i want to personalize this myself i want
to
create a new way of inputting this data
i want to find a new way of fingering
that
i want to find a new way of representing
this and allowing folks
that personhood and that sense of agency
and then
developing some sense of trust through
that right actually trusting each other
when we say like no i'm just too tired
for this
isn't like a call of being laziness it's
just like i'm fatigued and i have to
deal with that
and then finally just going back to this
notion of concreteness is this
more representation right representing
not only disabled people but the
processes
that disabled folks and folks with
disabilities might be using
as normal right so like as a normal
expression of human diversity
so that could be when we're talking
about instruments
showing the accommodative versions of
the instruments from the get-go
not making them some secret thing or
treating instruments that can do
multiple things as being pretty cool
like what if a student learned flute and
all of a sudden couldn't use their mouth
and jaw
what do they do well i mean like a
digital input kind of thing is a
different approach to it but it still
were
if that's what they want to do so
showing that there's these different
representations these different
approaches different options
i think beyond those specific kinds of
things i think about the breadth of
teachers really probably need to embrace
the notion that disability is just more
complex
and identity is more complex than we
often know
i think about alex lubit who's a
musicologist and composer at university
of
minnesota wrote a book where he talks
about the social confluence
model of disability which is the notion
that our identity
and our embodiedness the extent to which
is seen as being disabled
changes radically with time space and
activity
and to know that is to me is super
freeing and also super challenging
because it makes me realize that when a
kid comes in to a classroom that i'm
working in
and they're struggling i can't just
brush it off
as being perhaps their disability not
that i would want to do that but
i have to notice that okay how are they
doing the last class what was working in
those last classes
what about this space or maybe in this
space they're feeling very
empowered or actualized how can i help
other people realize
and help this person be able to advocate
for themselves those things to me
are really central to breaking down
ableism
in the classroom i think you can expand
this beyond i mean
being active at school board meetings
being active at any kind of place that
policy is written in and asking
how is disability included or not and
why looking into books and reading into
the books and noticing when disability
is left out
and why it's left out or why it's used
and when and why it's used just becoming
more critical
it doesn't necessarily mean like uh oh
this
movie has a really bad representation i
should never watch it and i have to like
beat myself up for watching it well
that's not the point the point is
to sit there and go why is this and why
did before
why did i get such joy out of this you
know
why is this problematic what can i do
about it like just being conscious some
respects it's becoming more
uncomfortable
right consistently becoming more
uncomfortable with certainty
that is freeing in some respects and
allows you to see the people around you
and actually engage with the people
around you knowing that you don't have
to have all the expertise
if anti-ableist pedagogy is to ableism
as
anti-racist pedagogy is to racism i
see many great examples that you just
gave for
educators who want to learn more about
this or ways that they can explore
anti-ableist practices but
getting to the idea of a person is not a
label
especially not a medical label that is
applied how
do you recommend that people understand
and kind of uncover those ableist
assumptions that they might have
so for example when i did the podcast
with andreas stefik like
we were talking about people without
sight or blind individuals and some of
the ableist assumptions that would come
with that
would be oh well they can't program
because they can't see the screen
so how would they become a computer
programmer but how would you recommend
people kind of uncover some of those
ableist assumptions
i mean one of them is just to actually
talk to people
who've lived these experiences so
remembering that
one person with a disability is one
person with disability one person who's
disabled is one person who's disabled
in the autistic community there's this
notion that if you've met one person
with autism you've met one person with
autism
so like no one can be the gatekeeper for
an entire
embodiment or diagnosis because these
things don't function that way right
but finding some people if you are
non-disabled finding some disabled
colleagues or friends
to chat with that would be some stuff
but also knowing that their job is not
to teach you
so you have to like you should never go
into a relationship
with that intent but like having
conversations
it's useful to look at research look at
who's talking about these things
i think about one of the ways i
connected earlier on in
my career with people who are thinking
about similar-ish stuff was number one
joe obrama published an article that
said the social model of disability in
music educators journal
that told me that i could talk to joe
because i wasn't knowing that that word
was something or like i read something
and i realized that like adam patrick
bell was someone that i could contact
and actually talk to
and they would be able to point me in
the right direction for resources
in some respects that's the connection
here is finding resources yeah
if we're talking about specifically
controllers or
things that there is an identifiable
creator like you can't talk to sax
right like you can't email him he's been
dead for a while all right
but like you can email the team at
apple that does garageband and ask them
about their accessibility
you could ask them about how do screen
readers work i mean you're going to
develop your
language and the things you're going to
become
more conscious about through engaging i
mean you can buy
or engage with really simple disability
studies introductions like i've got one
next to me because i'm using a project
called disability studies a student's
guide by colin cameron
it's a really short kind of thing those
things would give you ideas
for where to go next we live in a time
when youtube exists
and there are plenty of if you type in
disabled
and something and critique you could
probably find it
so that's helpful to me in the same kind
of respect even if it's not about your
field
finding any time that disabled folk or
folk with disabilities are talking about
their lives
using this so alice long has a book
called disability visibility
and it's stories of disabled folk read
things like that their stories which is
really really fun
in some respects right because you can
actually get a sense of these things
through lived experience rather than
through like dissected analysis
use social media if that's the kind of
person you are
and like twitter actually autistica
is a really helpful feed to me because
it's often people talking about stuff
that i would never have thought of
because i don't live
in that same kind of body or mind like i
remember when cognitive behavioral
therapy
first was starting to become critiqued
in more public spaces
well the actual autistic community have
a lot to say about that
finding that stuff out i mean you can
just as simple as as you're starting to
grow your
consciousness about things that related
to disability take
a word and search it in one of the
social media feeds just see how that
word comes up
see if there's been debate about it
looking into professional
and scholarly work is also really
helpful like whatever field you're in
i'm sure there's some kind of
publication and
it either has spoken about these things
or not and if it hasn't then you should
be one of those people who requests
a commentary on it if you are in
computer science and you don't think
that they've talked enough about
disability studies based notions of
education
you need to be the one who asks for it
it's unexhaustible the options you have
right
but i would also say like don't just
limit yourself to
things about disability because things
about race
and disability are hyper-connected
things about
ethnicity and race and disability are
hyper-connected especially in education
so like if you look in the history of
special education a lot of it
came about to deal with people whose
body minds did not fit the
english-speaking white expectations of
schools
right and that's not a critique on
special educators that are out there
i don't want that to be seen as that but
we look at the history of things
finding that out makes you go okay so if
i study a little bit more about
anti-racism i bet i'm gonna probably
also get a broader understanding of
anti-oppressive education right which i
mean at least in
my experience that's how it's been like
when i look at this i think about race
and then i think about
other intersections of oppression and it
makes me go okay what would the analog
be for
disability in this situation okay well
what that would look like if i plugged
it into
computer science i think the last little
thing is just have conversations
with your colleagues about this stuff
yep and don't let it get pushed off
it's not okay to have a conversation
about disability that is just
that kid has adhd and they're really
hyper and
that's all we're going to talk about
disability no like talk about
accessibility and
equity for disabled folk and folk with
disability like
talk about how can this thing be
perceived and
manipulated visually how can it be done
orally how can it be done
kinesthetically how can it be done just
about any other ways that we proceed
and can articulate information and it's
not good enough to just do
one you need to have multiple and so
talking to your colleagues about ways to
create
multiple lines of access does a lot for
everyone it does a lot for broad notion
of diversity of thinking and
embodiment it does a lot about helping
you think through
multiplicity of teaching strategies and
it starts good conversations
yeah and for anyone who's interested so
some people that you could look into for
cs education
might be like andre steffek who i
mentioned the podcast that i did with
him
but also like richard ladner my israel
todd lash so these are all individuals
who are discussing this and i'll include
some more in the show notes so you can
all check that out
so thinking broadly back to where we
were
like at the start of this conversation
so like your intersections and
experiences with
cs and the arts is an interesting topic
to explore
what i'm curious is if you could share
some of the ideas
of what practitioners and scholars
etc in both fields could kind of learn
from each other
the worst thing i've found in my life is
when i put up a wall
to cordon off certain kinds of thinking
or certain kinds of doing or even person
itself
it impoverishes me as much as it also
impoverishes the experience
around us so like i know that many arts
educators can feel marginalized in
school spaces
there are actual reasons for that and
there are imagined reasons for that we
won't get into that right here
i've seen arts educators be leery of
computer science educators
because often there may be concern that
they're going to take over the time and
space that i have
well my thought is number one don't be
antagonistic because it's not that
person's
choice it's not like if bob if he had
been a you know tech teacher
specifically teaching coding
he and i we couldn't have been
antagonistic to each other we could have
been but there would be no reason for it
because he
like literally doing the job he's been
hired to do it's more of an
administrative kind of thing so having a
conversation with administrator
i would say just finding any chance to
collaborate
is going to give you chances to make
from artistic standpoint
maybe new ways to express artistic ideas
right so even if you're thinking from a
formalist kind of standpoint right
like the elements like there are ways to
express the elements of art
that are also coded and also like
thinking about i think about things as
codes anymore i mean like i remember
as i didn't mention this but like as a
little kid when we first got the
internet
gosh that seemed so long ago i went to
barnes noble and
bought this huge book of html code
because to make a website you had to
know
some kind of html code and i remember
coding my first website and i think it
was a review of the phantom menace
which of course i'd have to be that guy
right
but i now think about what are the codes
or at least the repetitions
in art that exist because of that
structure right
that's more of a metaphorical notion but
i also think you could do that same kind
of metaphorical way of understanding
computer science i mean like i know
there is a notion of the elegant code
i know i've heard people talk about that
well what makes it elegant
right like it's often only because it
doesn't have extra stuff right it has
just its bare essentials
it also has this certain kind of
different aesthetic like why not
discuss things that are about computers
using the same
artistic phrases and metaphors that we
use i mean those are ways that we can
share
language and then broaden our language
other things i think they would get out
of
these kind of collaborations or these
intersections i mean for me
there's also this notion of just less
boredom of repeating the same thing over
and over again
and there's a worry of like oh i'm now
gonna have to learn all this stuff
it's like well i mean if you're
collaborating with a colleague
like they're gonna probably take care of
that stuff you're probably gonna learn
incidentally
about this stuff so like you need to not
worry about that because that's that
whole like
expert mindset thing that i know you
have quite a
theoretic conversation around of like we
need to bust down this notion that
we can be experts in everything or the
experts in general
but like just noticing like i've got
some ideas that i can bring
and they can have some ideas to me
though
probably the biggest thing is that we're
talking about kids
education and their lives right and
humans education in their lives
right we owe it i think to
the people that we get the opportunity
to get paid to work with
to show them the way that the things fit
together
instead of just showing the these
isolated disciplines
and showing them the ways that they can
prep for
xyz job or xyz next class
like i remember leaving like sixth grade
and
thinking i knew a whole lot of stuff i
mean i didn't think specifically about
all this stuff but i don't actually
remember
knowing how any of it fit together like
i didn't know how writing an essay fit
together with reading
a book about the civil war those didn't
make sense to me why i was learning
these things together or
how music class fit into any of this
stuff or even when we had computer class
like we played a whole lot of oregon
trail and otter lake
i learned how to use the hardware
but like if we can even these two areas
that are seen
to be somehow so disparate or so
disconnected if we can come together and
show
how these things make holistic things in
people's lives
then just about everyone else in the
school can too and like
often at least for me my partnerships
with other areas
art and computer science as well as in
the writing the teachers were teaching
my music class became the center of the
school for months on end when we were
doing big projects
it's not because of power that was cool
it was cool because there were kids
coming to school and working
chunks of their day to do something they
thought was really neat
and that all came together any chance
that we can give
more opportunities for that we should go
for you've mentioned
many things that could be holding back
either individuals or
like the field etc or very least things
that we need to consider but if
i were able to grant a magic wand and
you could change one thing
what would that thing be that you would
want to change well i'm going to go
radical then
i would probably dissolve discipline
specific classes
i would create an education experience
where
students could create their own projects
where teachers could create projects
where we would learn all the same
somewhat like the basics that we need to
learn
that you would be expected to learn so
that you could carry on but that
isn't just going to music class for 30
minutes every other day
or every other week you know it's
actually that like music could
ingrained into freaking everything right
like
arts could be integrated into everything
if we are doing things in
these broad project-based things i also
get to collaborate with my colleagues in
a way that i never was able to
i mean like we were a very collaborative
school but i could imagine
had that not been the case how isolated
i would have felt at the end of the
hallway
and getting rid of some of these things
i think would change a lot number one it
would change a lot of the chances for
collaboration because we have it
going back to disability it would
require accommodation to be the central
aspect of the teachers do
is accommodating the needs and the
specific interest of
students if it's in a project-based
space where everyone's operating that
way
you can't not do that because there
isn't a specific
objective criteria of what this success
is in this
that has some problems and there's
definitely things that would have to
be figured out but to me that would
probably be the biggest thing i think
that sometimes disciplinary
boundaries do way more to
separate people not just ideas but
people and ways of doing things
then they are often worth and if that
sounds too radical for people i'll
include a link to
the sudbury schools which is a model
that does that and like
literally the kindergartners get a vote
on like budget
concerns with the same amount of weight
as the so-called staff members etc so
like
i highly recommend checking it out i'll
make sure to include a link to that so
it's not as radical as that sounds
it's possible it's such a possible kind
of thing
even if that was like the inspirational
goal
any work that you did between where
we're at and there i think would make
a school more interesting engaging than
it might otherwise
yeah so you had mentioned like some
experiences with bipolar
i have mentioned on this podcast with my
experiences with depression and
suicidality and whatnot
and then you and i one on one have had
many conversations about mental health
over the years
i'm curious if you could share some
of the advice or things that you do
to try and stave off like the burnout
that can come with
working in education especially working
as a researcher in education
the thing that i probably should have
learned earlier on is that having some
way to separate
my work thoughts even if it's not just a
work life
like and it's never going to be 100
balanced all the time in fact that's not
how balance works
right but it's the notion of being
conscious
of having time to unplug and having time
to be
fully um plugged in and not necessarily
being halfway
during the summer right now i've made it
that generally most afternoons i don't
do a lot of stuff
i'm now on the ramp up towards school so
i'm doing more afternoon kind of things
but
i needed that during the school year
i've done a lot better about
unless i have an ex required thing at
seven o'clock
everything shuts off i don't check email
anymore
that's it i tell the students that as
well and i tell them like hey if
something's due the next day
you're probably not going to email me
the night it's due
and i put it in the syllabi just so that
they all know like
and it's all as much just me trying to
model for them that you need to do this
you need to have some unplugging time i
have a couple activities that i really
love doing that i can
get and completely engrossed in that
will force me to not think about
most educational or most of my
professional work number one is
rebuilding guitars and like messing
around with their wiring i have a strat
in the other room
that i have rewired four times in the
last week and a half
and it still doesn't play and i don't
know what it is but when i'm working on
it
hours pass and i listen to a podcast and
i
not once do i think about other stuff i
also i've
gotten really deep back into my vinyl
collection well my vinyl
i'm searching specific things i'm trying
to not be a like a big collector i have
tons of stuff a specific album so i'll
come down here and
i'm lucky i have an office space that's
kind of nice and cool archives are down
here and
i'll just sit and listen to an album and
i do the whole album
just to kind of take a break those
things have been really really important
and i think the last one is i'm trying
to
differentiate like when i'm at work i do
work stuff
so like when i'm at my school office
which i can't right now they're they're
renovating it
but like that's where i get all my
school work done so this space that
we're talking i actually don't do a ton
of school work at anymore because i try
to do it at work
the notion of separation having
something else to do
and also having kind of a musical thing
to do has been helpful
i mean our dogs are always like
they make you do something right and
then i also have recently invested in a
hammock
so when it's not rainy i go out and lay
in the hammock for an hour or so just to
kind of clear my mind
yeah sounds nice yeah it has been it's
been one of the best investments i mean
the fact that i have multiple things
to share now i think when you and i met
i would not have had anything
that i could have shared that would have
been my relaxation because i didn't
value relaxation and then i had a mental
breakdown
so you know that's what happens i'm glad
that you asked that because like i try
really hard
in my classes anymore even freshmen
because i teach a
freshman intro to college class i really
try to
impress upon them that also the notion
of valuing rest
and that rest is as central to getting
things done
as just trying to work on it and so like
we talk about like
okay you have this essay to write and
how do you break it up
okay well well i've got three hours to
write right now i was like no no
no that's good but like you might try
that but your brain might not work that
way
and some peoples do but you should test
out a couple different ways of
approaching it because i think having
these conversations is important
it does break some of the stigma of
talking about mental health
it also breaks the stigma of feeling
like you're selfish for
taking care of yourself like i did i
often felt like
i should be doing this i should be doing
that i should be doing that but the only
person who thought i should be doing
that was
my brain that didn't want me to relax i
don't know about for you
but at least for me especially in the
doctoral program
there were so many high achievers in the
program that
even if one person was taking a break i
would not be looking
at that break i'd be looking at the
other person who happened to not be
taking a break at that time so it always
just felt like well
somebody out there is working really
hard so i also need to be doing that
yep it's almost that fear of missing out
but in working
there's some right now i see so many
people who are like well i just
published this i just published this
like that's great for them that's really
great for them i used to go like oh that
sucks that i didn't do that
and maybe that's one of the mental
health secrets is
knowing how to celebrate others and not
to see their successes
somehow tied to your failure all right
so here's a quote that i like to
review is from lao tzu so it's people
don't get tired of enjoying and praising
one who
not competing as an all the world no
competitor and that is a quote that like
really sits with me and kind of
resonates with what you were saying
that's great
so what do you wish there's more
research on that could inform your own
practices
i mean i would love to see more research
in music ed and
in computer science in many educational
fields that is informed by disability
studies
rather than just being informed by
special education and i don't want to
set up an inherent binary between those
two things but they look at things
differently
and i don't think that we see the full
nature of stuff by looking at one
so i'd love to see more things i'd also
just love to see these more
intersectional or interactive
approaches to disability to be used more
often i mean we often still i mean i
said
social model and there's medical model
but like those that binary is really
problematic and it's
been pretty much like discussed to death
at this
disability studies and everyone has
their own model i mentioned alex lubitz
social confluence approach which sees
ability disability and even identity
change
at the moment of the space-time
encounter
and activity i think about patrick
hupper's rhizomatic approach to
disability that sees disability
in a very intersectional kind of way
that is never repeatable and always
becoming
and then also tom shakespeare's critical
realist approach that
he talked about whereas the medical
model said
my body disables me and social model
says society disables me he says both my
body and society can disable me
that is interesting i think more things
in those worlds would be helpful and
then finally i think
more pedagogical work that is based off
the narratives first-person narratives
of disabled folk
folk with disabilities i think that
we're beyond where
an expert needs to explain what to do
and we're at a good point where
a good scholar can sit down with someone
and craft something together
and that person doesn't necessarily need
the scholar but the scholar
probably most likely needs that person
so like maybe
for reciprocity sake we do things where
we are teaching each other and rather
than just going and
collecting data but like yeah i mean i'd
love to see a
thing about coding from a blind coder
like
i'd love to hear a conversation about
that not necessarily about the
accommodations they need but what they
do
right we don't need to sit and ask about
accommodations
from someone who's doing it right now
just ask them how they're doing it
that will show you their approach that
is
probably accommodative but i think more
things like that would be very helpful
and
it wouldn't have to be speculative you
know some of the wider disability theory
stuff
seems speculative when you don't have as
many people
sharing firsthand accounts yeah
definitely plus on everything that you
just said the only thing that i might
add from a meta level is
it would be nice if disability was like
a demographic category that was
normalized and discussed
in research because it's often oh well
here's the gender here's the race
here's the etc of the population we were
studying but it does not mention
disability at all
well the trick would be and this is
actually something i would love to see
as it is having being disabled
demographically
is different than being disabled in a
lived experience way
it's the same thing for race gender
ethnicity our social categories our
social identities
are often run slightly different than
our our personal identities and
our embodiment in mind we could do a
whole podcast episode on socially
situated identities but that's for
another time
yes is there anything that you're
working on right now that you could use
some assistance with right now not so
much pretty
soon i will be i'm going to be working
with a couple
larger institutions as a disability and
inclusion
consultant on some large
technology-based computer science
adjacent
projects i'll definitely share them your
way whenever things come up
i'm pretty excited about those but i
can't even guess at what the things that
would arise
but i'm very excited to actually be in a
large group and hopefully these grants
get funded because we just need to do
these cool big massive things
where we're integrating a lot of
different approaches and having people
who
can speak to different issues of
representation
and oppression do you have questions for
the field or for myself
i guess i have two kind of broad
questions for you could really replace
any discipline
or field here but like how can and have
disabled persons or persons with
disabilities impacted computer science
specifically computer science pedagogy i
think if someone can't identify
the way that those things are it might
be something to have a conversation with
themselves right
disabled people are everywhere persons
with disabilities are
impacting lots of fields so it might
behoove someone who is a cs teacher
or a scholar to know the ways that
disabled people people with disabilities
have impacted their work and i also
think about how might
centering disability reframe computer
science practices and assumptions
like if we centered the notion of
disabled
embodiment and enlightenment as the main
position
what things would be identified as
problematic what things would be
identified as
really probably not necessary because
they're really holding up people doing
important work and that could be
anywhere from words
to literal approaches to the metaphors
we use
i think those two things are the
questions i ask myself related to almost
any area that i'm in because it does
help me
rethink things right i mean like if i
don't know i'm doing something and i
don't know how
disabled folk people with disabilities
have impacted that i probably should
know
and if i don't think about what it might
do to centering then
i need to do that thought experiment and
it can also be done more
scholarly based right like a full-on
critique i like that
so the last question then is where my
people go to connect with you
in the organizations that you work with
i could be found on facebook and twitter
jesse rathgipper also could contact me
at email which is
j-e-s-s-e-r-a-t-h-g-e-b-e-r
at a-u-g-u-s-t-a-n-a
dot e-d-u so it's jesse rathgiver at
augustana.edu
you also might follow the james madison
university center for inclusive music
engagement
something that i helped found and still
intentionally connected to
work that dave stringham who's the
director there is doing is just really
phenomenal
and finally just might keep the
disability studies and music education
symposium
as well as the disability studies and
music education working group
on your list of things to search out
we're about to start this working group
and i'm really excited about it but
trying to be more coordinated about
bringing disability studies into the
field of music education
and hopefully being able to share beyond
that i think about like our colleague
who we've brought up a couple times adam
patrick bell
his life is connected to technology and
computer science
almost equally as it is to music and so
i'm certain that his contribution
through this would probably have some
useful things for
folks in the cs field and with that that
concludes this week's episode of the
csk8 podcast
i hope you enjoyed listening to this
interview and i hope you learned
something new about disability culture
in particular
something we haven't talked about enough
on this particular podcast friendly
reminder that the show notes includes
many links to
the resources the scholars and the
publications that we mentioned in this
particular episode
so make sure you check that out at
jaredelery.com if you be so kind please
consider sharing this with somebody
who'd be interested in learning more
about disability culture and research
or even the connections with arts and cs
thank you so much for listening i hope
you are staying safe and are having a
wonderful week
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Publications and scholars we mentioned
Scholars we mentioned
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