November 18, 2025 • 45 mins
As medical advancements continue to shape the detection, diagnosis, and treatment of disability and illness, technology is often presented as a path to autonomy. Rebecca Monteleone shows how such technologies contribute to a cruel double bind, forcing disabled people to be accountable for adapting to a world built by and for nondisabled people while dismissing their lived experiences in favor of medical expertise. In the new book The Double Bind of Disability, Monteleone explores anecdotes about prenatal genetic screening, deep brain stimulation, and do-it-yourself artificial pancreas systems, exposing new relationships among disability, authority, knowledge, and responsibility. Monteleone is joined here in conversation with Ashley Shew.
Rebecca Monteleone is associate professor of disability and technology at the University of Toledo and author of The Double Bind of Disability: How Medical Technology Shapes Bodily Authority.
Ashley Shew is a professor of science, technology, and society at Virginia Tech and author of Against Technoableism: Rethinking Who Needs Improvement.
EPISODE REFERENCES:
-Ally Day
-“Transmobility: Possibilities in Cyborg (Cripborg) Bodies,” Mallory Kay Nelson, Ashley Shew, and Bethany Stevens / Catalyst: Feminism, Theory, Technoscience
-Jackie Leach Scully
-Dana Lewis
-Biomedicalization: Technoscience, Health, and Illness in the U.S. / Adele E. Clarke, Laura Mamo, Jennifer Ruth Fosket, Jennifer R. Fishman, Janet K. Shim, editors
Praise for the book:
"A generous, timely, and essential contribution to understanding the current politics that shape medical technology and disability in the context of neoliberal ableism. A book that I will be thinking-making-feeling with for many years to come!"
—Laura Forlano, Northeastern University
The Double Bind of Disability: How Medical Technology Shapes Bodily Authority by Rebecca Monteleone is available from University of Minnesota Press. Thank you for listening.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Becca Monteleone (00:04):
And in fact, you know, the DIY APS community,
the artificial pancreas systemcommunity, has a hashtag
WeAreNotWaiting.
Ashley Shew (00:13):
Definitely, there's this idea that the cure is
always coming is really nothelpful to disabled people who
currently exist.
Becca Monteleone (00:22):
There is this joke in the diabetes community
of everybody's always telling methat it's two years away. One of
my informants was told thatfifty years ago when she was
diagnosed. Hello, my name isBecca Monteleone and I am an
Associate professor ofdisability studies at the
(00:42):
University of Toledo and theauthor of the book The Double
Bind of How Medical TechnologyShapes Bodily Authority. And I
am so excited today to be inconversation with Doctor. Ashley
Hsu.
We're going to chat all thingsdisability, med tech, authority,
ableism, and so on. And so justas a kind of brief overview of
(01:05):
what the book is about, itreally is looking at this
relationship between people andmedical technologies that are
made to detect, mitigate,prevent, or cure disability. And
I'm really, really interested inthese questions about how these
technologies change how we framedisability and the kinds of ways
(01:28):
that they articulate disabilityas a problem. And then,
consequently, kind of who getsto decide what we do about that
problem, and then who isresponsible for enacting those
interventions. And what I find,I look at three different
medical technologies,specifically prenatal genetic
testing, deep brain stimulationfor motor conditions like
(01:51):
Parkinson's disease, and then doit yourself artificial pancreas
systems created by people withtype one diabetes.
And while those feel like theydon't have anything in common at
all, what I find is that acrossthese technologies, these users
get stuck in this double bindwhere they are both expected to
(02:11):
be responsible for taking careof the quote unquote problem of
disability. And at the sametime, their lived experience,
their embodied expertise is nottaken seriously at all. And so
they're both expected to beresponsible, but not able to be
authoritative and instead areexpected to always defer to what
(02:33):
a clinician or what laboratorymedicine says is the way that we
manage disability. That soundsbleak, right? But talking to
people, you find all of theseways in which kind of within
this really restrictivesociotechnical system, these
users are finding new kinds ofsocial, political and material
(02:54):
arrangements that can resistsome of that kind of
individualization and controland move toward a sort of a
politic that embraces thatembodied knowledge.
So that's a big picture of whatwe're talking about today. But I
want to give a chance forDoctor. Shu to introduce herself
(03:14):
and kick us off.
Ashley Shew (03:16):
Hi, I'm Ashley Shew. I'm super excited to be in
this conversation. I'm aprofessor of science,
technology, and society atVirginia Tech, and I'm also
really interested in pretty mucheverything in this book. The
experiences of disabled techusers and their thoughts about
technology are central in my ownwork. And it's an honor to read
(03:39):
this book early, the best partof scholarly life, and to be in
this conversation with Doctor.
Monteleone. Is it okay if Istart in on questions?
Becca Monteleone (03:49):
Yeah, let's get to it.
Ashley Shew (03:52):
So first of all, I am a fan of this work and I've
read some of your other workprior to this point. And you
even talk about in this book,your earlier work with Ali Day
on quantified healthism. I'mwondering about the origin
stories of this book withrelationship to all of the other
(04:12):
things that you've worked on andhow this book came to be in the
context of your other work.
Becca Monteleone (04:17):
Yeah, thank you for that. I think I have
been interested mostly inquestions about knowledge,
right? How do we make knowledgeabout disability? And why is it
so often that that knowledgedoesn't include disabled people?
Right?
And you find yourself, I think,in the spaces that we run-in in
disability studies and STScoming back to technology over
(04:40):
and over and over again. And Ithink often when we think about
technology or we critiquetechnology in disability studies
or in STS, we can often treatthe technology itself like
that's the most important thing,this very kind of socially
deterministic approach, and belike, all of this, you know,
this new technology isexceptional because it's suing X
(05:01):
or Y. And that's where a lot ofmy work started is critiquing
these technologies. And thinkingthrough, you know, like the work
I do with Ali Day on quantifiedhealthism, the way that we kind
of measure and visualize bodyminds through these technologies
and the consequences of that.But then when I kind of came
(05:23):
into this work, I wanted toexplore more nuance, right?
I wanted to get back to kind ofthe human, the mundane. And in
fact, actually a piece that youco wrote was part of that
inspiration that you wrote withMallory K. Nelson and Bethany
Stevens, where you talk aboutexperiences of technology as
(05:45):
disabled women. And there's aline in there where you say,
none of this is super, all ofthis is every day. And it made
me think about kind of themundanity of technology instead
of refocusing on the humanexperience.
And so in this book, I reallywanted to focus on that kind of
qualitative human experience oftechnology and learn what we
(06:09):
could from that. And so that'skind of how those pieces came
together.
Ashley Shew (06:15):
Yeah. And so what you're doing in this book is
methodologically reallyinteresting. So we have very
different methods, even though Ithink we agree on a lot of the
fundamental problems and issuesand questions of knowledge and
expertise being really, reallyinteresting. So I feel like I
learned a lot from your book.You were very good at
referencing what your informantswere saying about technology in
(06:39):
a way that flowed really wellwith your case studies.
I'm wondering about sort of howyou thought about methods and
how you thought about doingthese, like, three very
different sorts of technologycase studies. Well, I wanna ask
you about the choice of those ina second, but but first I'd like
to ask you about the methodsthat you're using in this book.
Becca Monteleone (07:00):
Sure. Yeah. I mean, I'd love to talk about
methodology. I describe myselfas a bit of a scavenger in that
I'm taking a lot of things froma lot of different disciplines
and practices, in part because Icome from kind of just an anti
disciplinary mess of abackground. But I really drawing
(07:21):
kind of methodologically fromqualitative sociology more
anywhere else.
And so the cases are builtaround a series of semi
structured and unstructuredinterviews with users of these
technologies. And then each ofthe cases has some additional
input from an additional kind ofsecondary source that changes
(07:42):
depending on what the case is.And then also doing qualitative
analysis of different kind ofmaterial things that exist
around these technologies,whether that's what a hospital
system presents to patientsabout deep brain stimulation or
a commercial website for aprenatal genetic screening
(08:03):
technology, right? And so usingthat as a piece of evidence
rather than as presenting kindof factual information, but also
being like an interview, a kindof value laden, positioned piece
of evidence that I can thenbuild into this argument. And so
I use a lot of kind of inductiveanalysis.
(08:24):
I'm laser focused on what it isthat my informants are saying
rather than trying to kind ofimpose a theoretical framework.
So doing a lot of kind of groundup building in cases. And I take
a lot of inspiration frommethodologists who talk about
approaching empirical work withhumility. I recognize the power
(08:46):
of the informants offering metheir stories. I'm really
careful to try not tooveranalyze or over abstract or
overdetermine what it is thatthey're sharing with me.
And so there is a lot oftheoretical stuff at the
beginning and the end of thebook, but the case studies
themselves, I really try to kindof cue very closely to what it
(09:07):
is that informants arepresenting me with and trying to
kind of honor that in theprocess.
Ashley Shew (09:15):
No, I love that. And I feel like there's so much
work in the area of disabilitythat could use more humility as
someone who studies some ofthese things as well. That's a
lovely, observation. I'mwondering now, you have these
three very diff very, verydifferent case studies, prenatal
genetic screening, deep brainstimulation, and DIY artificial
(09:37):
pancreas systems. I imagine atsome point you were writing an
IRB for each one of these andmapping out the scope and a
proposal for how to do Did youknow when you started writing
this book that it would be thesethree cases?
Or what was your choice in termsof thinking? Because I can
(09:57):
imagine other types of systemsand technologies thread through
the same framework and with somesimilar methods to what you're
doing. What made you choosethese three? What was
interesting about them to you?
Becca Monteleone (10:08):
Yeah, thank you. Mean, write at the very
beginning of the book, I thinkit's like the third paragraph,
I'm like, these things seem likethey don't have anything in
common, so let's talk about whatthey have in common. But I mean,
I came to the three casesseparately, right? So I was kind
of doing work in each of thesespaces when I started to kind of
draw them together. And in fact,with thinking about prenatal
(10:30):
genetic testing before kind ofmoving into these other spaces.
And you know, there are a coupleof reasons why I think that they
work together. But I think toyour point, you know, one of the
points that I am trying to makehere is that these are not
exceptional technologies.They're certainly indicative of
(10:51):
what I'm seeing as this kind ofstrengthening moral and material
regime around how we think aboutdisability and technology. But
this could be done with a casestudy on cochlear implants or
neuroprosthetics or, you know,pacemakers, right? I believe
that you would kind of yieldsimilar results within this
(11:11):
framework.
But I do think there are somethings that make these cases
interesting to put intoconversation, and I think it's
because a lot of them deal withthese issues around control,
right? And control looksdifferent in the different
cases, but there are certainlykind of resonances around, what
(11:32):
it is that we're supposed tocontrol about how we present
ourselves as good, responsiblecitizens in the world, right? So
with prenatal genetic testing,prospective parents are expected
to make the responsible choicenot just for themselves, but for
their societies. This comes upin the interviews around, you
(11:53):
know, it is costly to raise adisabled child, and so therefore
you have to think about thatwhen you're making a choice. You
know, in deep brain stimulation,many of my informants spoke
about a desire to return to paidemployment or a desire to
alleviate some of the caregivingthat those being done by, you
(12:14):
know, a spouse or a familialcaregiver, and the ways in which
they felt they were responsibleto do that.
And so therefore, that's whythey adopted deep brain
stimulation. Or in theartificial pancreas system case,
many people with type onediabetes talk about the blame
they are assigned all the timebecause the kind of daily burden
(12:35):
of management of chronic illnessfalls on to the user, right? And
so they are kind of constantlyconfronted in the clinic by a
non disabled clinician about whyaren't you trying hard enough?
Why aren't you doing enough? Whyare you failing?
And so this idea of kind ofresponsibility and control sort
of bleeds through all of these,I think.
Ashley Shew (12:57):
Yeah. And some of the language that you use around
responsibility and control, someof which comes from your
informants and some from youranalysis. I was really struck by
the term that you use, epistemicinvalidation. Can you tell us a
little bit more about epistemicinvalidation as a concept?
Becca Monteleone (13:14):
Sure. Yeah, absolutely. I mean, so this is
what I'm seeing as the kind ofrejection of that experiential
and embodied knowledge thathappens in the clinic. So this
idea of an epistemicinvalidation comes up, I think,
most strongly in the chapteraround deep brain stimulation,
in which we have these userswho've received this brain
(13:37):
implant, which if you're notfamiliar with deep brain
stimulation, you're receivingkind of a constant electrical
charge that is in a targetedarea of the brain that is meant
to mitigate some of the symptomsof movement condition like
Parkinson's. And so often therewill be associated side effects
with this, some of them are kindof well researched and some of
(13:58):
them are less well researched,but there are other things that
people experienced in that deepbrain stimulation.
So for example, I had aninformant who talked about
developing depression after theyhad had an adjustment made to
their deep brain stimulator, andthey brought that to their
clinician and their cliniciansaid, No, that isn't related,
(14:20):
right? Because the psychiatricand the neurological are
completely different and theseare completely dissociated from
each other. And so she went toanother clinician. That
clinician also said no. And thenshe turned to a community of
other people who had receiveddeep brain stimulation, and she
was able to connect with someonewho was across the country who
was like, That exact same thinghappened to me.
(14:43):
I had a clinician who workedwith me. Here's the evidence
that they presented. Bring thisto your clinician and move
forward that way. And so thisis, I think, just one example of
kind of when your embodiedexperience comes into conflict
with kind of what the clinicianor the laboratory medicine,
(15:03):
right? So sometimes it's aboutlike, well, I looked at your
brain and I didn't see anything,right?
So the visualization piece ofit. So when there's some kind of
tension or conflict between thatembodied experience and the
tools that a clinician or amedical establishment has
available to it, that embodiedexperience is going to get
dismissed. Right? And this linksto all sorts of ways in which we
(15:27):
see this happening to disabledpeople everywhere. Right?
I think it's Jackie Leach Scullywho writes about how disabled
people are often met withsuspicion when they share things
about their lives that goagainst kind of what the
prevailing hegemonic discourseis, because there's an
assumption that there is somekind of self interest there. And
(15:50):
so I think that links to thisepistemic invalidation in
similar ways that we just don'tbelieve disabled people when
they say things.
Ashley Shew (15:58):
No, I mean, this is so true. You know, experienced
this my own life. I've witnessedit with other disabled friends.
And it like this book gives mesome language about it that's
really, I think, really helpful.There will be a couple of times
during the semester I teach ontechnology and disability where
we read lots of disabled peoplestories and things.
And there'll be a couple oftimes in the semester where,
(16:21):
like, the only conclusion isthat there's no good way to be
disabled. Right? Like, no matterwhat you do, like, it doesn't
fit into the script and having,like, the language of the double
bind, like that is the very,front piece with your title is
actually really, really usefulbecause explains why there's no
good way to be disabled in in ashorter way than it is. Like,
(16:42):
you know, just look, look at allof these like here, collect all
of these stories. Like sometimesconcepts help us replace the
need to write a dissertation.
These sorts of things like canbe shorthand conceptually. So I
really, really appreciate thatlanguage of the double mind and
what you do around likeepistemic invalidation and the
(17:05):
community part I wanna ask youabout too. So with deep brain
stimulation, this example thatyou're giving with someone
experiencing depression who hasgotten a modification on their
deep brain stimulator, you know,they get validation within their
community. And we hear aboutthis with all sorts of
(17:26):
technologies. I think about itsometimes in terms of this like
DIY, like, what are we going todo if they don't believe us?
There are lots of ways that cango very wrong, right? Sometimes
medical supervision is useful sothat you don't like poison
yourself, convenient things likethat. But the sort of disbelief
that's involved that, can yousay a little bit about the
(17:47):
importance of community fromthis research?
Becca Monteleone (17:51):
Yeah, absolutely. Actually, to your
first point, the ways in whichit's like, there's no good way
to be disabled in the world. Iwas just thinking, so in the
conclusion of the book, before Ikind of pitch this, like, new
embodied knowledge politic, Isay explicitly, like, it just
seems like there's no good wayto exist in a non normative body
mind without being accused oftransgressing some authoritative
(18:14):
boundary or knowledge boundaryor boundary around kind of what
constitutes acceptableembodiment, right? Because
something I write about in thebook quite a lot is the
different ways that disabledpeople understand risk versus
how nondisabled peopleunderstand risk. And so that's
often viewed as you're making achoice, you're transgressing a
boundary around what'sacceptable to do or not do to
(18:35):
your body, which I think relatesto these questions around
community, right?
Especially thinking about the doit yourself artificial pancreas
system and that community, thatmovement that has sprung up
around people with type onediabetes, which to just kind of
give a brief overview of whatthat looks like, a do it
yourself artificial pancreassystem is essentially hacking
(18:58):
some of these diabetestechnologies that are
preexisting, like insulin pumpsand continuous glucose monitors,
in order to create a system thatrelieves some of that kind of
everyday management of bloodsugar by shifting some of that
over to an open sourcealgorithm, as opposed to you
having to make those kind ofminute by minute decisions about
(19:18):
whether you're going to doseadditional insulin and how
you're measuring what you'reeating and those kinds of
things. And that has been viewedvery differently by different
groups of people, right? Themedical technology company
Dexcom originally called theseDIYers rogue cowboy hackers.
Right? And so this thispresumption that these are
(19:39):
people who sort of wobbled outof this passive patient role and
now into this kind ofauthoritative, agential role are
doing so without anybody'sauthority, who are just kind of
wilding out and going off.
And kind of universally, what Ifound from people who are part
of that movement is that theyare getting benefits from being
(20:00):
in the community that extend farbeyond the benefits that they
get from kind of using thetechnology itself. And so much
of that has to do with theseshared priorities, right? So
there is both this kind ofepistemic invalidation that
you're experiencing this blame,this guilt in the clinic, but
there's also people were talkingabout the kind of just apathy
(20:22):
that they were feeling from themedical companies, for example.
So Dana Lewis, who is one of thefounders of the first of these
artificial pancreas systems thatwas made available, she talks
about her experience quitepublicly. She originally started
doing this because she neededthe alarm on her CGM to be
louder.
She was sleeping andexperiencing really bad blood
(20:45):
sugar lows that can bedangerous. You can die from
those. She wasn't able to hearthe alarm and wake up in order
to manage it. And so she hadreached out to the company and
she was like, Is there anythingthat I can do about this or that
you can do about this rather?And they're like, We'll get
around to it.
And she's like, Well, I coulddie in the meantime. And so that
kind of like apathy is what sortof stirred her to kind of see if
(21:10):
there was some way that shecould adjust this alarm, which
then led to this kind oftechnology afterward. But this
lived experience as beingvaluable is central to how these
communities exist. And also, Ithink this movement away from a
curative logic, which so much ofthe kind of medical
establishment rhetoric aroundtype one diabetes is like, we're
(21:34):
going to cure it, right? Don'tworry about it.
Two years, five years, tenyears, whatever. We're going
cure it, so don't worry aboutit. That kind of logic isn't
helpful in your day to daymanagement. And so moving over
into this DIY space, it's like,I need to get through tomorrow,
right? I can't get through twoyears from now, five years from
now.
And then finding people who arelike, Well, here's how I got
(21:55):
through yesterday, is itselfkind of very rewarding.
Ashley Shew (22:00):
Definitely, there's this sense in which this idea
that the cure is always comingis really not helpful to
disabled people who currentlyexist. And it's so deeply
entrenched in the way we talkabout a lot of different types
of disability, especially withthis idea of techno optimism.
All of your sort of disabledcases are read, Oh, in the
(22:24):
future, everything will be fine.In the future, we'll figure out
the genetic fix. In the future,We'll have the right technology
that you won't even feeldisabled or whatever that
amounts to.
It's deeply unreassuring. Wehave lots of examples where they
keep saying there will be a curefor something. And we're like
twenty years into the cure isthe cure is any time. And I
(22:45):
don't think people outside ofthe world of disability have any
appreciation of how obnoxiousthis is. You talk to a lot of
different people on the way tothis book and through this book.
And I'm wondering about some ofthe patient reactions to, I
don't even like the word patienthere because we're outside of
the clinic usually when we'retalking, like reactions to
(23:07):
techno optimism as a theme thatthey encounter.
Becca Monteleone (23:10):
Yeah, I think this idea of impatience, or if
you just sit back and don'tworry, clinicians are going to
take care of it, right? I dothink that that is threaded
through an awful lot of this asa way to keep people in that
compliant patient role. Just sitback, just follow the
directions, and eventually we'llcure this. And in fact, the DIY
(23:34):
APS community, the artificialpancreas system community, has a
hashtag WeAreNotWaiting,essentially getting at that
point because there is this jokein the diabetes community of,
Everybody's always telling methat it's two years away. It's
two years away.
It's two years away. In fact,one of my informants said that
she was told that fifty yearsago when she was diagnosed. And
(23:55):
she says the thing that hasdrawn her into this DIY
community here, I've actuallygot a direct quote from her she
says, I'm hooked to thiscommunity, and I'm so beyond
grateful for what people do init. I don't even know how to
describe how amazing it is. Theblessing of the do it yourself
community is it's impatient.
It's like, okay, don't tell usto wait. And so I think it's
(24:16):
kind of the both end ofrecognizing and valuing and
uplifting lived experience andrecognizing that what we've got
right now in the medicalestablishment is not sufficient.
And so, the kind of blame thatcomes in the clinic is in part
because what we've got availableto people through these
sanctioned channels isn'tsufficient.
Ashley Shew (24:38):
No, no, I really appreciate that. And then the
idea that this sort of rhetoricis supposed to put people in
this passive space where theylisten to clinicians. It serves
to actually exert medicalauthority or to discount
patient, like, immediate worriesif the cure is supposed to be
out there in two years, which issuch a fine amount of time.
Becca Monteleone (25:00):
It's just far enough away, right? I remember
at Coramette who talked aboutcure as being inaccessible, so
it creates this, I believe theterm he used was like a gilded
priesthood, right? And so it'slike the cure is for the experts
to worry about. You don't needto worry about it. It's
essentially kind of anadditional way of gatekeeping
(25:21):
that authority.
These questions around authorityare so interesting and around
what it is that we're supposedto be intervening on. This comes
up a lot in the deep brainstimulation case as well,
because deep brain stimulationdoesn't cure anything. It's a
mitigation of symptoms, andthose symptoms are often for the
kinds of conditions that myinformants had are things like
(25:44):
tremor, things that are veryvisible. And so there's often
this relationship between like,Well, you don't want to stand
out as having this kind ofvisible difference, and so you
want to use this intervention sothat you're not making a
spectacle of yourself. And infact, one of my informants in
that case didn't care about hertremor at all.
She was one of the fewinformants that I talked to in
(26:07):
that case who had been born withher disability as opposed to
acquiring it. There were otherthings that interested I in
addressing, like she was havingkind of increasing difficulty
breathing. So theseconversations around getting
this intervention were initiallyaround like, these are the
things that I care about. Isthis going to address this? And
she was under the impressionthat it was, and then it didn't.
(26:30):
And her clinician was veryfocused on kind of limiting her
tremor. And she says, it waslike he was somehow trying to
conquer my brain. He was sofocused on the mitigation of
this visible symptom that hewasn't listening to the things
that I was actually interestedin addressing, and it eventually
led to she had the implantremoved.
Ashley Shew (26:50):
I love the way in which you use informant, like,
testimony as part of this in allof these different cases. As you
were trying to find folks tointerview as your informants in
this, were there any strategiesthat you used? Because you have,
like, a diverse representationof feelings about the technology
and experiences with thetechnology. And I feel like that
(27:12):
would be really hard to likerecruit for in terms of a study
like this. I'm wondering aboutsome of the like behind the
scenes logistics of how did youget such good information from
the people that you talk to?
Becca Monteleone (27:23):
Well, thank you very much for saying that.
And I think a lot of it is luck,right? And a lot of it is
casting a very, very wide net ina lot of different places. And
so I recruited through a wholerange of different methods, and
a lot of it started with thesecommunities that exist outside
(27:44):
of the clinic, right? So whetherthat's a Facebook group for
folks who've gotten DBS or thereare quite a lot of kind of
online spaces for thisartificial pancreas system.
And some of it happened throughsnowball recruitment because
these are communities, right?And so I would interview
somebody and they'd go,Actually, I know somebody else
(28:05):
who had this experience and youshould talk to them, and that
kind of network. I was justlucky that those things existed
because going into this, it'snot always easy to see that
those things exist. I was veryfortunate to have informants who
were both kind of very openabout their own experiences and
very willing to share where theyhave found resources that then
became a kind of place where Iwas able to do some additional
(28:28):
recruitment.
Ashley Shew (28:30):
I really appreciate the sort of brilliance of how
you did this book. I think a lotof people who would initially go
to study any one of these thingswould start in the clinic and
then talk to clinicians and whothey would recommend talking to.
And I think about how sort ofrecruiting for studies around
disability, especially by peoplenot in disability studies, often
(28:52):
doesn't capture the sorts ofthings that you've captured here
that I think are way moreimportant. You know, people
always wanna send you to theirlike best patients and best
patients, people who are Youknow, people who are compliant
and people who are doing thethings that the clinicians like
are what you end up gettingthrough those recruiting
methods. And that's reflected inways that I think end up
(29:14):
invalidating actual wider andcommunity based experiences in
ways that are really, reallytricky.
Becca Monteleone (29:20):
Yeah, I will say I think that is a lesson I
am grateful to have learned fromdisability studies. That is
coming directly out of having abackground in disability
studies, because I think thoseof us who have done kind of
empirical work in this spacehave all been subject to that
cherry picking. In other studiesI've done, not in clinical
settings, but in social servicesettings, for example, where you
(29:41):
have to go through thegatekeeper to get access, and
the gatekeeper's like, Let mepresent the person who's going
to give you the brand pitch formy social service organization.
And so because I was alreadyaware of some of those dynamics,
there was kind of an intentionalchoice to kind of skirt that
sort of recruitment.
Ashley Shew (29:59):
-No, and especially in the world of technology,
people, Oh, we talk to thesepeople who use it the best, use
it in the ways we expect. Peoplehave, like, the brand
ambassadors coming out to tellyou about this technology. Not
that I think those experiencesare bad or wrong, but they're
just so shiny and corporatized.I feel like this book should be
read by everyone who doessociological research. Like,
(30:22):
about how you're going to, like,even talk about, like, who are
the people you're going to talkto just because,
methodologically, you're doingsomething that is such a better
representation.
I see so many calls forparticipants where, as someone
from disability studies, I lookat this and I go, oh, oh, you
know, what's gonna like, yeah,you'll get some interesting
information, but it's not gonnabe what you think because you
(30:44):
don't see the people quite aswell. So I really, really
appreciate the way in whichyou've approached this topic.
It's so refreshing. I'm sorry.I'm just fan girling.
I really wanted actually ask youabout some of your favorite
pieces in this book where youmight wanna give us a little
reading, a little flavor.
Becca Monteleone (31:02):
I would love to I mean, so I am at heart like
a fan of stories, and so myfavorite parts of the book are
the vignettes that I've beenable to construct with some of
the informants. In projectsaside from this one, I spend a
lot of time thinking aboutstorytelling and how people
express themselves that way andhow that's a form of knowledge
(31:23):
production. And that's somethingI try to kind of build into the
book too, to show through theformat of the book the argument
that I'm making around kind oflived experience as a valid form
of knowledge. I think there area couple of vignettes that I
really like, but maybe I'llstart with this one from Mary,
who was one of my informants inthe deep brain stimulation case.
(31:46):
Mary and I sit in a publiclibrary chatting about brain
implants.
She's an author living in theSouthwest, writing about her
experiences with early onsetParkinson's disease. In 2012,
she underwent surgery for deepbrain stimulation in which
electrodes were implanted thatnow send electrical impulses to
the areas of her brain thatcontrol gait, balance, and
tremor. During our two and ahalf hours together, Mary shares
(32:09):
both the joys and frustrationsof her device. She's pleased
with the implant overall, butshe also expresses disbelief at
how disconnected the designersof these devices and clinicians
who oversee their use are fromthe disabled people who use
them. For example, her implantis powered by a battery pack
that rests just under herclavicle.
Because the battery pack has asquare edge, when she raises her
(32:30):
arm, it juts out. Quote, Theydon't think about how you're
going to shave your underarm.She laughs. She and her husband
Barry, who joins us for theconversation, lament that there
are so few opportunities forpeople with Parkinson's to share
their knowledge with cliniciansand designers. Mary tells me,
When you go to a conference,you've got 500 people with
Parkinson's, and you've got twopeople, two experts up there on
(32:53):
the stage with their PowerPointgoing blah blah blah blah blah.
I've often said if you could get500 medical professionals and
force them to sit and listen to20 Parkinson's patients up there
on the stage, the amount of infothey would learn would be
amazing. But Barry quicklyfollows up with, except none of
them would come. Near the end ofour conversation, Mary shares
(33:13):
her thoughts on a new device indevelopment. It's an updated
version of a patient remote, acontroller that allows the user
to adjust the level ofstimulation from an implant
within certain parameters. Whereprevious models have used
buttons, this design features asleek touchscreen.
Mary rolls her eyes. For manypeople with Parkinson's, tremors
and fine motor dexterity meanthat touchscreens are difficult,
(33:35):
if not impossible, to use. Theirony is palpable. The sole
function of this piece oftechnology is to enable user
control over a medical device,and it's unusable by its
intended audience. Barry says,quote, If they had talked to the
patient first, they would havepointed that out right away.
You're going in the wrongdirection here. People with
Parkinson's should be the onesdesigning these things.
Ashley Shew (33:57):
I mean, all the vignettes that you use are so
good, but that one makes mescream a little bit because I,
as someone who hates touchscreens, they're bad for all
sorts of populations. So thisis, you know, Mary's experience
is in the context ofParkinson's. But there are some
really interesting studies aboutinstallations about touch
screens in hospital context forchecking in and how this
(34:21):
actually discourages some peoplefrom getting medical care and
the ways in which people end upneeding more help to use the
touch screens. You're actuallycausing them to lose
independence.
Becca Monteleone (34:35):
But touchscreens are sleek and
modern and cool, right? And Ithink this is all kind of
embroiled in this conversationaround, if we just have cooler,
better technology, then thatmeans that things have improved
in some way, right? And I thinkthat's part of this kind of
pressure that we're seeingapplied to even the informants
(34:56):
and the cases that I talk about.We just make this assumption
that better technology equalsbetter society. And that
includes things like replacingbuttons with a touchscreen.
Ashley Shew (35:07):
I hate it so much I tried to buy a car without a
touchscreen in it. I just wantto go on a whole thing about
touchscreen sucking right now,trying to put that beside so
that we can move forwardConversations. On this But this
idea of things being sleek andshiny, I think of the cyborg
Jillian Weissach quote, Theywant a shiny and metallic and in
(35:27):
their image. That this is theaesthetics of these things end
up. And I think that's why someof the DIY stuff ends up.
DIY things are not always themost beautiful, right? Because
they're not like And like thesort of revulsion that people
end up feeling like is aroundthis sort of techno optimism.
Anyway, I want to ask you aboutYou mentioned it in the context
(35:48):
of talking about the artificialpancreas DIY systems, but I want
to ask about it in the contextof prenatal genetic screening,
about the role of corporationsproducing these technologies and
what corporate ownership meansfor disabled people.
Becca Monteleone (36:06):
Yeah, I mean, that's a great question, and
it's one that I don't know thatwe know the kind of full scope
of the consequences of this yet.So in the context of prenatal
genetic screening and testing,increasingly these tests are
being distributed by privatecorporations into clinics. So
then also your results are oftencoming through these private
(36:30):
corporations as opposed there'sthis whole infrastructure that
seemingly exists in the prenatalclinic where if you get a
prenatal genetic screening ortesting done, then if there is
something to discuss, you willoften be referred to a genetic
counselor who is meant toprovide you with your quote
unquote non directive care asthey kind of talk through what
(36:52):
the results are. But at leastwhat I found overwhelming with
the folks I talked to, thatthat's not the pathway that
they're moving on at all. One ofmy informants talked about, I
just got a PDF from a randomcompany that said, nothing found
or whatever it was, right?
It was like a big rubber stampthat was like, all good, which
(37:12):
in itself is misleading, talkingabout what it is that prenatal
screening measures or doesn'tmeasure. But there's both the
increased pressure to adoptprenatal genetic screening and
testing because of the existenceof these private corporations.
And there is also this newrhetoric around it, right? That
(37:34):
you must adopt this in order tobe responsible because there is
an invested interest in youadopting these tests, right?
Because there is profit nowassociated with them in
meaningful ways.
And also then each of thesecorporations has their own
narrative around kind of whatthese tests do and do not do.
And so part of the evidence thatI looked at in that case was
(37:57):
what these privates were sayingabout what their tests and
screens do and do not do. Andthat rhetoric changed depending
on what the site was, dependingon who they were trying to
capture, right? Because they arealso trying to publicly solicit
the endorsement of clinicians toadopt their specific brand of
screening and testing. I thinkit certainly kind of complicates
(38:20):
things.
I think Adele Clark andcolleagues kind of model of
biomedicalization talks aboutthe sort of privatization of
health care and some of theimplications of that. But it
certainly reinforces andstrengthens these narratives
that associate the adoption ofthese kinds of screens and tests
as necessary for yourresponsible parenthood, which
(38:42):
then extends to your responsiblecitizenship.
Ashley Shew (38:46):
That's right. I'm wondering about this is a really
good book that's really wellresearched. How much of your
life have you spent on this? Didthis snowball into a project?
Were you going to write anarticle about one of these
things?
I'm just wondering about thetimeline.
Becca Monteleone (39:03):
I think I did my first conference presentation
about these issues and prenatalgenetic testing specifically in
2017. I think that's when I putin that first IRB to start
collecting some of thisempirical data. And what's
actually been reallyinteresting, and I think you
(39:25):
probably understand this as anSTS scholar and really
frustrating, is that when youwork on a project for this long
about technology, the technologyhas changed completely and the
landscape has changed completelysince then. So, for example,
right, I started interviewingpeople about artificial pancreas
systems in 2018. The firstartificial pancreas system had
(39:48):
only been made kind of publiclyavailable in 2015.
Right? And so that has changedenormously. That landscape has
changed enormously. There hasbeen a pretty concerted push to
try to move some of thesetechnologies that have been
developed in these DIY spacesthrough FDA approvals. There has
been a hybrid closed loopinsulin pump that has become
(40:12):
available commercially.
And there have been lots ofreactions to that, which I'm
happy to talk about, but arekind of irrelevant here. The
ways in which the technologieshave absolutely transformed in
that almost a decade has beeninteresting. It's been
interesting to see that. Andsomething like the prenatal
genetic screening, particularlythe noninvasive prenatal genetic
(40:35):
screening, which are these kindof blood tests which change
people's risk calculus, whichmeans that they're kind of being
introduced into the clinic on amore regular basis because there
is, quote, no risk in gettingthese tests done. The
proliferation of those in theclinic has been pretty universal
in The United States, right?
And so that has changed thelandscape, that has changed
(40:57):
attitudes. The overturning ofRoe v. Wade in 2022 has also
changed that landscape in somepretty significant ways. It's
been a long time and things havechanged quite a bit. And I
wonder if I started this projectnow, how it might look
different.
But I do think kind of some ofthe root social narratives that
emerged are absolutely stillthere, if not strengthened.
Ashley Shew (41:19):
Well, no, and the concepts that you get to
introduce through this work arelong standing ones. I want to
ask, what did you have to takeout of this book that you would
really like people to know? Orwere there any things that
didn't make it into this book,but that you've been thinking
about, like, since the editingprocess, the bonus tracks?
Becca Monteleone (41:38):
What a good question. I mean, I think there
are so many kind of individualvignettes or beautiful quotes or
things like that, but that justkind of sometimes fall out in
the editing process. I try notto be, like, too precious with
these kinds of things. Myinstinct as a qualitative
(41:58):
researcher, particularly one whohas really been committed to
this kind of inductive approach,kind of ground up approach, is
that everything is important. Aperson wouldn't say something to
me if they didn't think it wasimportant.
And so sometimes it's just thatprocess of being like, Yes, this
is an important thing, but it'snot important for this argument,
(42:19):
or It's not part of this piece.In general, I really try to hold
that value that people'spersonal narratives are
important. Whatever it is thatthey're telling matters. So
having to make some of thosehard choices of, you know, this
is what I can present in thischapter because this chapter
needs to be not 200 pages long.It's an ongoing process, and
(42:43):
this book went through quite atransformation.
Ashley Shew (42:45):
I mean, you've done in this book is so monumental to
make these chapters so readable,but also keep voices alongside
the sort of theoretical andconceptual work that's
happening. It's very exciting.Do you have projects that
dovetail from this one?
Becca Monteleone (43:01):
-Yes. Yeah. Thank you for asking that. Yes.
My my next project is one thatdirectly relates to kind of this
issue of knowledge productionand authority, particularly
credibility.
And so I am currently in theprocess of drafting a proposal
for a book around the productionof knowledge about intellectual
disability in public discourse.And so that is being done in
(43:24):
collaboration with a number ofprojects and partners I have
working directly with peoplewith intellectual disabilities.
While it doesn't deal with themedical technology piece of
this, it absolutely deals withthe authority piece of this. And
in this space, we can't thinkabout authority over disability
without also thinking about themedical establishment, right?
And so it is a kind of series, apatchwork of different projects
(43:47):
around how people withintellectual disabilities create
kind of authority aroundknowledge production and what we
need to do kind of toepistemically embrace different
kinds of knowledge production.
How do we move away from thisexpectation that knowledge must
look like a certain kind ofthing? We must use certain kinds
(44:08):
of language. We must, appearcertain kinds of ways and have
certain kinds of credentials. Sohow do we challenge that and
resist that? Which is very muchin line with kind of what comes
out of the conclusion of thisbook, That there are other ways
that we can think and be.
And so what do those look like?
Ashley Shew (44:26):
Oh, I am so hyped about your next project. I
cannot wait. On that note, doyou have any other things that
you want to tell us?
Becca Monteleone (44:34):
No, I don't think this was an absolute
pleasure. Thank you so much. Ireally want to reiterate that
your own work has been reallyinstrumental in the formation of
this work. And so drawing a loton your work on techno ableism
particularly really informed somuch of kind of how I structured
this book and also just thehumane way in which you write
(44:57):
and think about technology anddisabled people has been really,
really influential in my ownwork. You know, it is all
ambivalent, right?
It is all gray area. And givingdisabled people the grace to
adopt medical technologies toalleviate the ableism that
exists in the world while alsorecognizing that these systems
(45:17):
are oppressive. That's not easyto do, and I've drawn a lot of
inspiration from your own work.
Ashley Shew (45:22):
Oh, thank you so much. I'm super hyped about your
work and learning from it andcan't wait to take it into my
own next project. And I honestlyam so excited about your next
set of work on credibility andintellectual disability. It's so
exciting to see where this isgoing, and thank you so much.
Narrator (45:39):
This has been a University of Minnesota press
production. The book, The DoubleBind of How Medical Technology
Shapes Bodily Authority byRebecca Monteleone is available
from University of MinnesotaPress. Thank you for listening.
And in fact, you know, the DIY APS community,
the artificial pancreas systemcommunity, has a hashtag
WeAreNotWaiting.
Ashley Shew (00:13):
Definitely, there's this idea that the cure is
always coming is really nothelpful to disabled people who
currently exist.
Becca Monteleone (00:22):
There is this joke in the diabetes community
of everybody's always telling methat it's two years away. One of
my informants was told thatfifty years ago when she was
diagnosed. Hello, my name isBecca Monteleone and I am an
Associate professor ofdisability studies at the
(00:42):
University of Toledo and theauthor of the book The Double
Bind of How Medical TechnologyShapes Bodily Authority. And I
am so excited today to be inconversation with Doctor. Ashley
Hsu.
We're going to chat all thingsdisability, med tech, authority,
ableism, and so on. And so justas a kind of brief overview of
(01:05):
what the book is about, itreally is looking at this
relationship between people andmedical technologies that are
made to detect, mitigate,prevent, or cure disability. And
I'm really, really interested inthese questions about how these
technologies change how we framedisability and the kinds of ways
(01:28):
that they articulate disabilityas a problem. And then,
consequently, kind of who getsto decide what we do about that
problem, and then who isresponsible for enacting those
interventions. And what I find,I look at three different
medical technologies,specifically prenatal genetic
testing, deep brain stimulationfor motor conditions like
(01:51):
Parkinson's disease, and then doit yourself artificial pancreas
systems created by people withtype one diabetes.
And while those feel like theydon't have anything in common at
all, what I find is that acrossthese technologies, these users
get stuck in this double bindwhere they are both expected to
(02:11):
be responsible for taking careof the quote unquote problem of
disability. And at the sametime, their lived experience,
their embodied expertise is nottaken seriously at all. And so
they're both expected to beresponsible, but not able to be
authoritative and instead areexpected to always defer to what
(02:33):
a clinician or what laboratorymedicine says is the way that we
manage disability. That soundsbleak, right? But talking to
people, you find all of theseways in which kind of within
this really restrictivesociotechnical system, these
users are finding new kinds ofsocial, political and material
(02:54):
arrangements that can resistsome of that kind of
individualization and controland move toward a sort of a
politic that embraces thatembodied knowledge.
So that's a big picture of whatwe're talking about today. But I
want to give a chance forDoctor. Shu to introduce herself
(03:14):
and kick us off.
Ashley Shew (03:16):
Hi, I'm Ashley Shew. I'm super excited to be in
this conversation. I'm aprofessor of science,
technology, and society atVirginia Tech, and I'm also
really interested in pretty mucheverything in this book. The
experiences of disabled techusers and their thoughts about
technology are central in my ownwork. And it's an honor to read
(03:39):
this book early, the best partof scholarly life, and to be in
this conversation with Doctor.
Monteleone. Is it okay if Istart in on questions?
Becca Monteleone (03:49):
Yeah, let's get to it.
Ashley Shew (03:52):
So first of all, I am a fan of this work and I've
read some of your other workprior to this point. And you
even talk about in this book,your earlier work with Ali Day
on quantified healthism. I'mwondering about the origin
stories of this book withrelationship to all of the other
(04:12):
things that you've worked on andhow this book came to be in the
context of your other work.
Becca Monteleone (04:17):
Yeah, thank you for that. I think I have
been interested mostly inquestions about knowledge,
right? How do we make knowledgeabout disability? And why is it
so often that that knowledgedoesn't include disabled people?
Right?
And you find yourself, I think,in the spaces that we run-in in
disability studies and STScoming back to technology over
(04:40):
and over and over again. And Ithink often when we think about
technology or we critiquetechnology in disability studies
or in STS, we can often treatthe technology itself like
that's the most important thing,this very kind of socially
deterministic approach, and belike, all of this, you know,
this new technology isexceptional because it's suing X
(05:01):
or Y. And that's where a lot ofmy work started is critiquing
these technologies. And thinkingthrough, you know, like the work
I do with Ali Day on quantifiedhealthism, the way that we kind
of measure and visualize bodyminds through these technologies
and the consequences of that.But then when I kind of came
(05:23):
into this work, I wanted toexplore more nuance, right?
I wanted to get back to kind ofthe human, the mundane. And in
fact, actually a piece that youco wrote was part of that
inspiration that you wrote withMallory K. Nelson and Bethany
Stevens, where you talk aboutexperiences of technology as
(05:45):
disabled women. And there's aline in there where you say,
none of this is super, all ofthis is every day. And it made
me think about kind of themundanity of technology instead
of refocusing on the humanexperience.
And so in this book, I reallywanted to focus on that kind of
qualitative human experience oftechnology and learn what we
(06:09):
could from that. And so that'skind of how those pieces came
together.
Ashley Shew (06:15):
Yeah. And so what you're doing in this book is
methodologically reallyinteresting. So we have very
different methods, even though Ithink we agree on a lot of the
fundamental problems and issuesand questions of knowledge and
expertise being really, reallyinteresting. So I feel like I
learned a lot from your book.You were very good at
referencing what your informantswere saying about technology in
(06:39):
a way that flowed really wellwith your case studies.
I'm wondering about sort of howyou thought about methods and
how you thought about doingthese, like, three very
different sorts of technologycase studies. Well, I wanna ask
you about the choice of those ina second, but but first I'd like
to ask you about the methodsthat you're using in this book.
Becca Monteleone (07:00):
Sure. Yeah. I mean, I'd love to talk about
methodology. I describe myselfas a bit of a scavenger in that
I'm taking a lot of things froma lot of different disciplines
and practices, in part because Icome from kind of just an anti
disciplinary mess of abackground. But I really drawing
(07:21):
kind of methodologically fromqualitative sociology more
anywhere else.
And so the cases are builtaround a series of semi
structured and unstructuredinterviews with users of these
technologies. And then each ofthe cases has some additional
input from an additional kind ofsecondary source that changes
(07:42):
depending on what the case is.And then also doing qualitative
analysis of different kind ofmaterial things that exist
around these technologies,whether that's what a hospital
system presents to patientsabout deep brain stimulation or
a commercial website for aprenatal genetic screening
(08:03):
technology, right? And so usingthat as a piece of evidence
rather than as presenting kindof factual information, but also
being like an interview, a kindof value laden, positioned piece
of evidence that I can thenbuild into this argument. And so
I use a lot of kind of inductiveanalysis.
(08:24):
I'm laser focused on what it isthat my informants are saying
rather than trying to kind ofimpose a theoretical framework.
So doing a lot of kind of groundup building in cases. And I take
a lot of inspiration frommethodologists who talk about
approaching empirical work withhumility. I recognize the power
(08:46):
of the informants offering metheir stories. I'm really
careful to try not tooveranalyze or over abstract or
overdetermine what it is thatthey're sharing with me.
And so there is a lot oftheoretical stuff at the
beginning and the end of thebook, but the case studies
themselves, I really try to kindof cue very closely to what it
(09:07):
is that informants arepresenting me with and trying to
kind of honor that in theprocess.
Ashley Shew (09:15):
No, I love that. And I feel like there's so much
work in the area of disabilitythat could use more humility as
someone who studies some ofthese things as well. That's a
lovely, observation. I'mwondering now, you have these
three very diff very, verydifferent case studies, prenatal
genetic screening, deep brainstimulation, and DIY artificial
(09:37):
pancreas systems. I imagine atsome point you were writing an
IRB for each one of these andmapping out the scope and a
proposal for how to do Did youknow when you started writing
this book that it would be thesethree cases?
Or what was your choice in termsof thinking? Because I can
(09:57):
imagine other types of systemsand technologies thread through
the same framework and with somesimilar methods to what you're
doing. What made you choosethese three? What was
interesting about them to you?
Becca Monteleone (10:08):
Yeah, thank you. Mean, write at the very
beginning of the book, I thinkit's like the third paragraph,
I'm like, these things seem likethey don't have anything in
common, so let's talk about whatthey have in common. But I mean,
I came to the three casesseparately, right? So I was kind
of doing work in each of thesespaces when I started to kind of
draw them together. And in fact,with thinking about prenatal
(10:30):
genetic testing before kind ofmoving into these other spaces.
And you know, there are a coupleof reasons why I think that they
work together. But I think toyour point, you know, one of the
points that I am trying to makehere is that these are not
exceptional technologies.They're certainly indicative of
(10:51):
what I'm seeing as this kind ofstrengthening moral and material
regime around how we think aboutdisability and technology. But
this could be done with a casestudy on cochlear implants or
neuroprosthetics or, you know,pacemakers, right? I believe
that you would kind of yieldsimilar results within this
(11:11):
framework.
But I do think there are somethings that make these cases
interesting to put intoconversation, and I think it's
because a lot of them deal withthese issues around control,
right? And control looksdifferent in the different
cases, but there are certainlykind of resonances around, what
(11:32):
it is that we're supposed tocontrol about how we present
ourselves as good, responsiblecitizens in the world, right? So
with prenatal genetic testing,prospective parents are expected
to make the responsible choicenot just for themselves, but for
their societies. This comes upin the interviews around, you
(11:53):
know, it is costly to raise adisabled child, and so therefore
you have to think about thatwhen you're making a choice. You
know, in deep brain stimulation,many of my informants spoke
about a desire to return to paidemployment or a desire to
alleviate some of the caregivingthat those being done by, you
(12:14):
know, a spouse or a familialcaregiver, and the ways in which
they felt they were responsibleto do that.
And so therefore, that's whythey adopted deep brain
stimulation. Or in theartificial pancreas system case,
many people with type onediabetes talk about the blame
they are assigned all the timebecause the kind of daily burden
(12:35):
of management of chronic illnessfalls on to the user, right? And
so they are kind of constantlyconfronted in the clinic by a
non disabled clinician about whyaren't you trying hard enough?
Why aren't you doing enough? Whyare you failing?
And so this idea of kind ofresponsibility and control sort
of bleeds through all of these,I think.
Ashley Shew (12:57):
Yeah. And some of the language that you use around
responsibility and control, someof which comes from your
informants and some from youranalysis. I was really struck by
the term that you use, epistemicinvalidation. Can you tell us a
little bit more about epistemicinvalidation as a concept?
Becca Monteleone (13:14):
Sure. Yeah, absolutely. I mean, so this is
what I'm seeing as the kind ofrejection of that experiential
and embodied knowledge thathappens in the clinic. So this
idea of an epistemicinvalidation comes up, I think,
most strongly in the chapteraround deep brain stimulation,
in which we have these userswho've received this brain
(13:37):
implant, which if you're notfamiliar with deep brain
stimulation, you're receivingkind of a constant electrical
charge that is in a targetedarea of the brain that is meant
to mitigate some of the symptomsof movement condition like
Parkinson's. And so often therewill be associated side effects
with this, some of them are kindof well researched and some of
(13:58):
them are less well researched,but there are other things that
people experienced in that deepbrain stimulation.
So for example, I had aninformant who talked about
developing depression after theyhad had an adjustment made to
their deep brain stimulator, andthey brought that to their
clinician and their cliniciansaid, No, that isn't related,
(14:20):
right? Because the psychiatricand the neurological are
completely different and theseare completely dissociated from
each other. And so she went toanother clinician. That
clinician also said no. And thenshe turned to a community of
other people who had receiveddeep brain stimulation, and she
was able to connect with someonewho was across the country who
was like, That exact same thinghappened to me.
(14:43):
I had a clinician who workedwith me. Here's the evidence
that they presented. Bring thisto your clinician and move
forward that way. And so thisis, I think, just one example of
kind of when your embodiedexperience comes into conflict
with kind of what the clinicianor the laboratory medicine,
(15:03):
right? So sometimes it's aboutlike, well, I looked at your
brain and I didn't see anything,right?
So the visualization piece ofit. So when there's some kind of
tension or conflict between thatembodied experience and the
tools that a clinician or amedical establishment has
available to it, that embodiedexperience is going to get
dismissed. Right? And this linksto all sorts of ways in which we
(15:27):
see this happening to disabledpeople everywhere. Right?
I think it's Jackie Leach Scullywho writes about how disabled
people are often met withsuspicion when they share things
about their lives that goagainst kind of what the
prevailing hegemonic discourseis, because there's an
assumption that there is somekind of self interest there. And
(15:50):
so I think that links to thisepistemic invalidation in
similar ways that we just don'tbelieve disabled people when
they say things.
Ashley Shew (15:58):
No, I mean, this is so true. You know, experienced
this my own life. I've witnessedit with other disabled friends.
And it like this book gives mesome language about it that's
really, I think, really helpful.There will be a couple of times
during the semester I teach ontechnology and disability where
we read lots of disabled peoplestories and things.
And there'll be a couple oftimes in the semester where,
(16:21):
like, the only conclusion isthat there's no good way to be
disabled. Right? Like, no matterwhat you do, like, it doesn't
fit into the script and having,like, the language of the double
bind, like that is the very,front piece with your title is
actually really, really usefulbecause explains why there's no
good way to be disabled in in ashorter way than it is. Like,
(16:42):
you know, just look, look at allof these like here, collect all
of these stories. Like sometimesconcepts help us replace the
need to write a dissertation.
These sorts of things like canbe shorthand conceptually. So I
really, really appreciate thatlanguage of the double mind and
what you do around likeepistemic invalidation and the
(17:05):
community part I wanna ask youabout too. So with deep brain
stimulation, this example thatyou're giving with someone
experiencing depression who hasgotten a modification on their
deep brain stimulator, you know,they get validation within their
community. And we hear aboutthis with all sorts of
(17:26):
technologies. I think about itsometimes in terms of this like
DIY, like, what are we going todo if they don't believe us?
There are lots of ways that cango very wrong, right? Sometimes
medical supervision is useful sothat you don't like poison
yourself, convenient things likethat. But the sort of disbelief
that's involved that, can yousay a little bit about the
(17:47):
importance of community fromthis research?
Becca Monteleone (17:51):
Yeah, absolutely. Actually, to your
first point, the ways in whichit's like, there's no good way
to be disabled in the world. Iwas just thinking, so in the
conclusion of the book, before Ikind of pitch this, like, new
embodied knowledge politic, Isay explicitly, like, it just
seems like there's no good wayto exist in a non normative body
mind without being accused oftransgressing some authoritative
(18:14):
boundary or knowledge boundaryor boundary around kind of what
constitutes acceptableembodiment, right? Because
something I write about in thebook quite a lot is the
different ways that disabledpeople understand risk versus
how nondisabled peopleunderstand risk. And so that's
often viewed as you're making achoice, you're transgressing a
boundary around what'sacceptable to do or not do to
(18:35):
your body, which I think relatesto these questions around
community, right?
Especially thinking about the doit yourself artificial pancreas
system and that community, thatmovement that has sprung up
around people with type onediabetes, which to just kind of
give a brief overview of whatthat looks like, a do it
yourself artificial pancreassystem is essentially hacking
(18:58):
some of these diabetestechnologies that are
preexisting, like insulin pumpsand continuous glucose monitors,
in order to create a system thatrelieves some of that kind of
everyday management of bloodsugar by shifting some of that
over to an open sourcealgorithm, as opposed to you
having to make those kind ofminute by minute decisions about
(19:18):
whether you're going to doseadditional insulin and how
you're measuring what you'reeating and those kinds of
things. And that has been viewedvery differently by different
groups of people, right? Themedical technology company
Dexcom originally called theseDIYers rogue cowboy hackers.
Right? And so this thispresumption that these are
(19:39):
people who sort of wobbled outof this passive patient role and
now into this kind ofauthoritative, agential role are
doing so without anybody'sauthority, who are just kind of
wilding out and going off.
And kind of universally, what Ifound from people who are part
of that movement is that theyare getting benefits from being
(20:00):
in the community that extend farbeyond the benefits that they
get from kind of using thetechnology itself. And so much
of that has to do with theseshared priorities, right? So
there is both this kind ofepistemic invalidation that
you're experiencing this blame,this guilt in the clinic, but
there's also people were talkingabout the kind of just apathy
(20:22):
that they were feeling from themedical companies, for example.
So Dana Lewis, who is one of thefounders of the first of these
artificial pancreas systems thatwas made available, she talks
about her experience quitepublicly. She originally started
doing this because she neededthe alarm on her CGM to be
louder.
She was sleeping andexperiencing really bad blood
(20:45):
sugar lows that can bedangerous. You can die from
those. She wasn't able to hearthe alarm and wake up in order
to manage it. And so she hadreached out to the company and
she was like, Is there anythingthat I can do about this or that
you can do about this rather?And they're like, We'll get
around to it.
And she's like, Well, I coulddie in the meantime. And so that
kind of like apathy is what sortof stirred her to kind of see if
(21:10):
there was some way that shecould adjust this alarm, which
then led to this kind oftechnology afterward. But this
lived experience as beingvaluable is central to how these
communities exist. And also, Ithink this movement away from a
curative logic, which so much ofthe kind of medical
establishment rhetoric aroundtype one diabetes is like, we're
(21:34):
going to cure it, right? Don'tworry about it.
Two years, five years, tenyears, whatever. We're going
cure it, so don't worry aboutit. That kind of logic isn't
helpful in your day to daymanagement. And so moving over
into this DIY space, it's like,I need to get through tomorrow,
right? I can't get through twoyears from now, five years from
now.
And then finding people who arelike, Well, here's how I got
(21:55):
through yesterday, is itselfkind of very rewarding.
Ashley Shew (22:00):
Definitely, there's this sense in which this idea
that the cure is always comingis really not helpful to
disabled people who currentlyexist. And it's so deeply
entrenched in the way we talkabout a lot of different types
of disability, especially withthis idea of techno optimism.
All of your sort of disabledcases are read, Oh, in the
(22:24):
future, everything will be fine.In the future, we'll figure out
the genetic fix. In the future,We'll have the right technology
that you won't even feeldisabled or whatever that
amounts to.
It's deeply unreassuring. Wehave lots of examples where they
keep saying there will be a curefor something. And we're like
twenty years into the cure isthe cure is any time. And I
(22:45):
don't think people outside ofthe world of disability have any
appreciation of how obnoxiousthis is. You talk to a lot of
different people on the way tothis book and through this book.
And I'm wondering about some ofthe patient reactions to, I
don't even like the word patienthere because we're outside of
the clinic usually when we'retalking, like reactions to
(23:07):
techno optimism as a theme thatthey encounter.
Becca Monteleone (23:10):
Yeah, I think this idea of impatience, or if
you just sit back and don'tworry, clinicians are going to
take care of it, right? I dothink that that is threaded
through an awful lot of this asa way to keep people in that
compliant patient role. Just sitback, just follow the
directions, and eventually we'llcure this. And in fact, the DIY
(23:34):
APS community, the artificialpancreas system community, has a
hashtag WeAreNotWaiting,essentially getting at that
point because there is this jokein the diabetes community of,
Everybody's always telling methat it's two years away. It's
two years away.
It's two years away. In fact,one of my informants said that
she was told that fifty yearsago when she was diagnosed. And
(23:55):
she says the thing that hasdrawn her into this DIY
community here, I've actuallygot a direct quote from her she
says, I'm hooked to thiscommunity, and I'm so beyond
grateful for what people do init. I don't even know how to
describe how amazing it is. Theblessing of the do it yourself
community is it's impatient.
It's like, okay, don't tell usto wait. And so I think it's
(24:16):
kind of the both end ofrecognizing and valuing and
uplifting lived experience andrecognizing that what we've got
right now in the medicalestablishment is not sufficient.
And so, the kind of blame thatcomes in the clinic is in part
because what we've got availableto people through these
sanctioned channels isn'tsufficient.
Ashley Shew (24:38):
No, no, I really appreciate that. And then the
idea that this sort of rhetoricis supposed to put people in
this passive space where theylisten to clinicians. It serves
to actually exert medicalauthority or to discount
patient, like, immediate worriesif the cure is supposed to be
out there in two years, which issuch a fine amount of time.
Becca Monteleone (25:00):
It's just far enough away, right? I remember
at Coramette who talked aboutcure as being inaccessible, so
it creates this, I believe theterm he used was like a gilded
priesthood, right? And so it'slike the cure is for the experts
to worry about. You don't needto worry about it. It's
essentially kind of anadditional way of gatekeeping
(25:21):
that authority.
These questions around authorityare so interesting and around
what it is that we're supposedto be intervening on. This comes
up a lot in the deep brainstimulation case as well,
because deep brain stimulationdoesn't cure anything. It's a
mitigation of symptoms, andthose symptoms are often for the
kinds of conditions that myinformants had are things like
(25:44):
tremor, things that are veryvisible. And so there's often
this relationship between like,Well, you don't want to stand
out as having this kind ofvisible difference, and so you
want to use this intervention sothat you're not making a
spectacle of yourself. And infact, one of my informants in
that case didn't care about hertremor at all.
She was one of the fewinformants that I talked to in
(26:07):
that case who had been born withher disability as opposed to
acquiring it. There were otherthings that interested I in
addressing, like she was havingkind of increasing difficulty
breathing. So theseconversations around getting
this intervention were initiallyaround like, these are the
things that I care about. Isthis going to address this? And
she was under the impressionthat it was, and then it didn't.
(26:30):
And her clinician was veryfocused on kind of limiting her
tremor. And she says, it waslike he was somehow trying to
conquer my brain. He was sofocused on the mitigation of
this visible symptom that hewasn't listening to the things
that I was actually interestedin addressing, and it eventually
led to she had the implantremoved.
Ashley Shew (26:50):
I love the way in which you use informant, like,
testimony as part of this in allof these different cases. As you
were trying to find folks tointerview as your informants in
this, were there any strategiesthat you used? Because you have,
like, a diverse representationof feelings about the technology
and experiences with thetechnology. And I feel like that
(27:12):
would be really hard to likerecruit for in terms of a study
like this. I'm wondering aboutsome of the like behind the
scenes logistics of how did youget such good information from
the people that you talk to?
Becca Monteleone (27:23):
Well, thank you very much for saying that.
And I think a lot of it is luck,right? And a lot of it is
casting a very, very wide net ina lot of different places. And
so I recruited through a wholerange of different methods, and
a lot of it started with thesecommunities that exist outside
(27:44):
of the clinic, right? So whetherthat's a Facebook group for
folks who've gotten DBS or thereare quite a lot of kind of
online spaces for thisartificial pancreas system.
And some of it happened throughsnowball recruitment because
these are communities, right?And so I would interview
somebody and they'd go,Actually, I know somebody else
(28:05):
who had this experience and youshould talk to them, and that
kind of network. I was justlucky that those things existed
because going into this, it'snot always easy to see that
those things exist. I was veryfortunate to have informants who
were both kind of very openabout their own experiences and
very willing to share where theyhave found resources that then
became a kind of place where Iwas able to do some additional
(28:28):
recruitment.
Ashley Shew (28:30):
I really appreciate the sort of brilliance of how
you did this book. I think a lotof people who would initially go
to study any one of these thingswould start in the clinic and
then talk to clinicians and whothey would recommend talking to.
And I think about how sort ofrecruiting for studies around
disability, especially by peoplenot in disability studies, often
(28:52):
doesn't capture the sorts ofthings that you've captured here
that I think are way moreimportant. You know, people
always wanna send you to theirlike best patients and best
patients, people who are Youknow, people who are compliant
and people who are doing thethings that the clinicians like
are what you end up gettingthrough those recruiting
methods. And that's reflected inways that I think end up
(29:14):
invalidating actual wider andcommunity based experiences in
ways that are really, reallytricky.
Becca Monteleone (29:20):
Yeah, I will say I think that is a lesson I
am grateful to have learned fromdisability studies. That is
coming directly out of having abackground in disability
studies, because I think thoseof us who have done kind of
empirical work in this spacehave all been subject to that
cherry picking. In other studiesI've done, not in clinical
settings, but in social servicesettings, for example, where you
(29:41):
have to go through thegatekeeper to get access, and
the gatekeeper's like, Let mepresent the person who's going
to give you the brand pitch formy social service organization.
And so because I was alreadyaware of some of those dynamics,
there was kind of an intentionalchoice to kind of skirt that
sort of recruitment.
Ashley Shew (29:59):
-No, and especially in the world of technology,
people, Oh, we talk to thesepeople who use it the best, use
it in the ways we expect. Peoplehave, like, the brand
ambassadors coming out to tellyou about this technology. Not
that I think those experiencesare bad or wrong, but they're
just so shiny and corporatized.I feel like this book should be
read by everyone who doessociological research. Like,
(30:22):
about how you're going to, like,even talk about, like, who are
the people you're going to talkto just because,
methodologically, you're doingsomething that is such a better
representation.
I see so many calls forparticipants where, as someone
from disability studies, I lookat this and I go, oh, oh, you
know, what's gonna like, yeah,you'll get some interesting
information, but it's not gonnabe what you think because you
(30:44):
don't see the people quite aswell. So I really, really
appreciate the way in whichyou've approached this topic.
It's so refreshing. I'm sorry.I'm just fan girling.
I really wanted actually ask youabout some of your favorite
pieces in this book where youmight wanna give us a little
reading, a little flavor.
Becca Monteleone (31:02):
I would love to I mean, so I am at heart like
a fan of stories, and so myfavorite parts of the book are
the vignettes that I've beenable to construct with some of
the informants. In projectsaside from this one, I spend a
lot of time thinking aboutstorytelling and how people
express themselves that way andhow that's a form of knowledge
(31:23):
production. And that's somethingI try to kind of build into the
book too, to show through theformat of the book the argument
that I'm making around kind oflived experience as a valid form
of knowledge. I think there area couple of vignettes that I
really like, but maybe I'llstart with this one from Mary,
who was one of my informants inthe deep brain stimulation case.
(31:46):
Mary and I sit in a publiclibrary chatting about brain
implants.
She's an author living in theSouthwest, writing about her
experiences with early onsetParkinson's disease. In 2012,
she underwent surgery for deepbrain stimulation in which
electrodes were implanted thatnow send electrical impulses to
the areas of her brain thatcontrol gait, balance, and
tremor. During our two and ahalf hours together, Mary shares
(32:09):
both the joys and frustrationsof her device. She's pleased
with the implant overall, butshe also expresses disbelief at
how disconnected the designersof these devices and clinicians
who oversee their use are fromthe disabled people who use
them. For example, her implantis powered by a battery pack
that rests just under herclavicle.
Because the battery pack has asquare edge, when she raises her
(32:30):
arm, it juts out. Quote, Theydon't think about how you're
going to shave your underarm.She laughs. She and her husband
Barry, who joins us for theconversation, lament that there
are so few opportunities forpeople with Parkinson's to share
their knowledge with cliniciansand designers. Mary tells me,
When you go to a conference,you've got 500 people with
Parkinson's, and you've got twopeople, two experts up there on
(32:53):
the stage with their PowerPointgoing blah blah blah blah blah.
I've often said if you could get500 medical professionals and
force them to sit and listen to20 Parkinson's patients up there
on the stage, the amount of infothey would learn would be
amazing. But Barry quicklyfollows up with, except none of
them would come. Near the end ofour conversation, Mary shares
(33:13):
her thoughts on a new device indevelopment. It's an updated
version of a patient remote, acontroller that allows the user
to adjust the level ofstimulation from an implant
within certain parameters. Whereprevious models have used
buttons, this design features asleek touchscreen.
Mary rolls her eyes. For manypeople with Parkinson's, tremors
and fine motor dexterity meanthat touchscreens are difficult,
(33:35):
if not impossible, to use. Theirony is palpable. The sole
function of this piece oftechnology is to enable user
control over a medical device,and it's unusable by its
intended audience. Barry says,quote, If they had talked to the
patient first, they would havepointed that out right away.
You're going in the wrongdirection here. People with
Parkinson's should be the onesdesigning these things.
Ashley Shew (33:57):
I mean, all the vignettes that you use are so
good, but that one makes mescream a little bit because I,
as someone who hates touchscreens, they're bad for all
sorts of populations. So thisis, you know, Mary's experience
is in the context ofParkinson's. But there are some
really interesting studies aboutinstallations about touch
screens in hospital context forchecking in and how this
(34:21):
actually discourages some peoplefrom getting medical care and
the ways in which people end upneeding more help to use the
touch screens. You're actuallycausing them to lose
independence.
Becca Monteleone (34:35):
But touchscreens are sleek and
modern and cool, right? And Ithink this is all kind of
embroiled in this conversationaround, if we just have cooler,
better technology, then thatmeans that things have improved
in some way, right? And I thinkthat's part of this kind of
pressure that we're seeingapplied to even the informants
(34:56):
and the cases that I talk about.We just make this assumption
that better technology equalsbetter society. And that
includes things like replacingbuttons with a touchscreen.
Ashley Shew (35:07):
I hate it so much I tried to buy a car without a
touchscreen in it. I just wantto go on a whole thing about
touchscreen sucking right now,trying to put that beside so
that we can move forwardConversations. On this But this
idea of things being sleek andshiny, I think of the cyborg
Jillian Weissach quote, Theywant a shiny and metallic and in
(35:27):
their image. That this is theaesthetics of these things end
up. And I think that's why someof the DIY stuff ends up.
DIY things are not always themost beautiful, right? Because
they're not like And like thesort of revulsion that people
end up feeling like is aroundthis sort of techno optimism.
Anyway, I want to ask you aboutYou mentioned it in the context
(35:48):
of talking about the artificialpancreas DIY systems, but I want
to ask about it in the contextof prenatal genetic screening,
about the role of corporationsproducing these technologies and
what corporate ownership meansfor disabled people.
Becca Monteleone (36:06):
Yeah, I mean, that's a great question, and
it's one that I don't know thatwe know the kind of full scope
of the consequences of this yet.So in the context of prenatal
genetic screening and testing,increasingly these tests are
being distributed by privatecorporations into clinics. So
then also your results are oftencoming through these private
(36:30):
corporations as opposed there'sthis whole infrastructure that
seemingly exists in the prenatalclinic where if you get a
prenatal genetic screening ortesting done, then if there is
something to discuss, you willoften be referred to a genetic
counselor who is meant toprovide you with your quote
unquote non directive care asthey kind of talk through what
(36:52):
the results are. But at leastwhat I found overwhelming with
the folks I talked to, thatthat's not the pathway that
they're moving on at all. One ofmy informants talked about, I
just got a PDF from a randomcompany that said, nothing found
or whatever it was, right?
It was like a big rubber stampthat was like, all good, which
(37:12):
in itself is misleading, talkingabout what it is that prenatal
screening measures or doesn'tmeasure. But there's both the
increased pressure to adoptprenatal genetic screening and
testing because of the existenceof these private corporations.
And there is also this newrhetoric around it, right? That
(37:34):
you must adopt this in order tobe responsible because there is
an invested interest in youadopting these tests, right?
Because there is profit nowassociated with them in
meaningful ways.
And also then each of thesecorporations has their own
narrative around kind of whatthese tests do and do not do.
And so part of the evidence thatI looked at in that case was
(37:57):
what these privates were sayingabout what their tests and
screens do and do not do. Andthat rhetoric changed depending
on what the site was, dependingon who they were trying to
capture, right? Because they arealso trying to publicly solicit
the endorsement of clinicians toadopt their specific brand of
screening and testing. I thinkit certainly kind of complicates
(38:20):
things.
I think Adele Clark andcolleagues kind of model of
biomedicalization talks aboutthe sort of privatization of
health care and some of theimplications of that. But it
certainly reinforces andstrengthens these narratives
that associate the adoption ofthese kinds of screens and tests
as necessary for yourresponsible parenthood, which
(38:42):
then extends to your responsiblecitizenship.
Ashley Shew (38:46):
That's right. I'm wondering about this is a really
good book that's really wellresearched. How much of your
life have you spent on this? Didthis snowball into a project?
Were you going to write anarticle about one of these
things?
I'm just wondering about thetimeline.
Becca Monteleone (39:03):
I think I did my first conference presentation
about these issues and prenatalgenetic testing specifically in
2017. I think that's when I putin that first IRB to start
collecting some of thisempirical data. And what's
actually been reallyinteresting, and I think you
(39:25):
probably understand this as anSTS scholar and really
frustrating, is that when youwork on a project for this long
about technology, the technologyhas changed completely and the
landscape has changed completelysince then. So, for example,
right, I started interviewingpeople about artificial pancreas
systems in 2018. The firstartificial pancreas system had
(39:48):
only been made kind of publiclyavailable in 2015.
Right? And so that has changedenormously. That landscape has
changed enormously. There hasbeen a pretty concerted push to
try to move some of thesetechnologies that have been
developed in these DIY spacesthrough FDA approvals. There has
been a hybrid closed loopinsulin pump that has become
(40:12):
available commercially.
And there have been lots ofreactions to that, which I'm
happy to talk about, but arekind of irrelevant here. The
ways in which the technologieshave absolutely transformed in
that almost a decade has beeninteresting. It's been
interesting to see that. Andsomething like the prenatal
genetic screening, particularlythe noninvasive prenatal genetic
(40:35):
screening, which are these kindof blood tests which change
people's risk calculus, whichmeans that they're kind of being
introduced into the clinic on amore regular basis because there
is, quote, no risk in gettingthese tests done. The
proliferation of those in theclinic has been pretty universal
in The United States, right?
And so that has changed thelandscape, that has changed
(40:57):
attitudes. The overturning ofRoe v. Wade in 2022 has also
changed that landscape in somepretty significant ways. It's
been a long time and things havechanged quite a bit. And I
wonder if I started this projectnow, how it might look
different.
But I do think kind of some ofthe root social narratives that
emerged are absolutely stillthere, if not strengthened.
Ashley Shew (41:19):
Well, no, and the concepts that you get to
introduce through this work arelong standing ones. I want to
ask, what did you have to takeout of this book that you would
really like people to know? Orwere there any things that
didn't make it into this book,but that you've been thinking
about, like, since the editingprocess, the bonus tracks?
Becca Monteleone (41:38):
What a good question. I mean, I think there
are so many kind of individualvignettes or beautiful quotes or
things like that, but that justkind of sometimes fall out in
the editing process. I try notto be, like, too precious with
these kinds of things. Myinstinct as a qualitative
(41:58):
researcher, particularly one whohas really been committed to
this kind of inductive approach,kind of ground up approach, is
that everything is important. Aperson wouldn't say something to
me if they didn't think it wasimportant.
And so sometimes it's just thatprocess of being like, Yes, this
is an important thing, but it'snot important for this argument,
(42:19):
or It's not part of this piece.In general, I really try to hold
that value that people'spersonal narratives are
important. Whatever it is thatthey're telling matters. So
having to make some of thosehard choices of, you know, this
is what I can present in thischapter because this chapter
needs to be not 200 pages long.It's an ongoing process, and
(42:43):
this book went through quite atransformation.
Ashley Shew (42:45):
I mean, you've done in this book is so monumental to
make these chapters so readable,but also keep voices alongside
the sort of theoretical andconceptual work that's
happening. It's very exciting.Do you have projects that
dovetail from this one?
Becca Monteleone (43:01):
-Yes. Yeah. Thank you for asking that. Yes.
My my next project is one thatdirectly relates to kind of this
issue of knowledge productionand authority, particularly
credibility.
And so I am currently in theprocess of drafting a proposal
for a book around the productionof knowledge about intellectual
disability in public discourse.And so that is being done in
(43:24):
collaboration with a number ofprojects and partners I have
working directly with peoplewith intellectual disabilities.
While it doesn't deal with themedical technology piece of
this, it absolutely deals withthe authority piece of this. And
in this space, we can't thinkabout authority over disability
without also thinking about themedical establishment, right?
And so it is a kind of series, apatchwork of different projects
(43:47):
around how people withintellectual disabilities create
kind of authority aroundknowledge production and what we
need to do kind of toepistemically embrace different
kinds of knowledge production.
How do we move away from thisexpectation that knowledge must
look like a certain kind ofthing? We must use certain kinds
(44:08):
of language. We must, appearcertain kinds of ways and have
certain kinds of credentials. Sohow do we challenge that and
resist that? Which is very muchin line with kind of what comes
out of the conclusion of thisbook, That there are other ways
that we can think and be.
And so what do those look like?
Ashley Shew (44:26):
Oh, I am so hyped about your next project. I
cannot wait. On that note, doyou have any other things that
you want to tell us?
Becca Monteleone (44:34):
No, I don't think this was an absolute
pleasure. Thank you so much. Ireally want to reiterate that
your own work has been reallyinstrumental in the formation of
this work. And so drawing a loton your work on techno ableism
particularly really informed somuch of kind of how I structured
this book and also just thehumane way in which you write
(44:57):
and think about technology anddisabled people has been really,
really influential in my ownwork. You know, it is all
ambivalent, right?
It is all gray area. And givingdisabled people the grace to
adopt medical technologies toalleviate the ableism that
exists in the world while alsorecognizing that these systems
(45:17):
are oppressive. That's not easyto do, and I've drawn a lot of
inspiration from your own work.
Ashley Shew (45:22):
Oh, thank you so much. I'm super hyped about your
work and learning from it andcan't wait to take it into my
own next project. And I honestlyam so excited about your next
set of work on credibility andintellectual disability. It's so
exciting to see where this isgoing, and thank you so much.
Narrator (45:39):
This has been a University of Minnesota press
production. The book, The DoubleBind of How Medical Technology
Shapes Bodily Authority byRebecca Monteleone is available
from University of MinnesotaPress. Thank you for listening.
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