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deals in the Meijer app. Hello

0:43

everyone and welcome to Talk Nerdy.

0:45

Today is Monday, December 4th, 2023.

0:48

And I'm the

0:50

host of the show, Dr. Cara Santa Maria.

0:53

So weird to say that still. So

0:56

we've got a great episode coming up for you. Before

0:59

we dive into it, as always, I do want

1:01

to thank those of you who make Talk Nerdy

1:03

possible. Remember, the format of my show is that

1:05

it is and will always be, as long as

1:07

I make it, free, 100% free for anybody to

1:10

download. I want everybody to have access to the

1:12

show. But obviously it does cost

1:14

money to make. So I follow that sort

1:16

of television public radio model.

1:19

And the platform that I use is

1:21

Patreon. So that means that if you

1:23

are able to and willing to support

1:25

the show, you're basically offsetting it for

1:28

individuals who can't, but who still want

1:30

to benefit from it. And I've got

1:32

a bunch of patrons who do that

1:34

week after week, and I'm just super

1:36

grateful for them. So as

1:38

always, I want to give a

1:41

shout out to my top patrons

1:43

this week. They include Daniel Lang,

1:46

David J. E. Smith, Mary Neva,

1:48

Brian Holden, David Compton, Gabrielle F.

1:50

Jaramillo, Joe Wilkinson, Pasquale Gelati, and

1:53

Ulrika Hagman. If you are interested

1:55

in supporting the show, you can do it for as little as, I

1:57

don't even know what the minimum is, 25 cents an episode? I

2:00

mean, you could probably do one cent an episode, but

2:02

then I would think that fees would eat into your

2:04

one cent and it might not be worthwhile. But

2:08

yeah, any amount helps. All

2:10

you've got to do

2:12

is visit Patreon. That's

2:15

patreon.com/talknerdy. Okay, no

2:17

more business. I want to dive in because this is a

2:19

really good one. So I

2:21

had the opportunity to speak

2:23

with Dr. Ashley Hsu today.

2:26

So she's an associate professor

2:28

of science, technology and society

2:30

at Virginia Tech, and she

2:32

specializes in disability studies and

2:34

technology ethics. Her

2:37

past work was in philosophy of

2:39

technology and specifically focusing on like

2:41

animal studies, emerging technologies and technical

2:44

knowledge. So she

2:46

wrote a book previously called Technological

2:48

Knowledge and Animal Constructions, but she

2:50

is a new book out right

2:52

now, and that's what we're going

2:54

to dive into called Against Techno-Ableism,

2:57

Rethinking Who Needs Improvement.

2:59

It's a fascinating, important,

3:02

exciting conversation, and I'm so glad to share it

3:04

with you today. So without any

3:07

further ado, here she is, Dr.

3:10

Ashley Hsu. Well,

3:13

Ashley, thank you so much for joining me

3:15

today. Thank you so much for having me

3:17

on. Of course. I'm

3:19

so excited to talk about your new

3:21

book. It is

3:23

called Against Techno-Ableism,

3:25

Rethinking Who Needs

3:28

Improvement. And of course, you

3:30

are an expert in this

3:32

field. You're a bioethicist.

3:35

You're also a professor. And what

3:37

specifically do you focus on

3:39

in your academic

3:41

work? Yeah. So my background

3:43

is in philosophy of technology. I really enjoy

3:46

reading a lot of history of technology as

3:48

well. And I've

3:51

been teaching on technology

3:54

and disability for a long time.

3:56

I'm a disabled person, and I

3:58

have serious engagement with disability. studies

4:01

in academic field as well. So

4:03

sort of in this nexus of

4:05

technology, disability, and medicine,

4:07

and sort

4:10

of thinking about history

4:12

and philosophy really carefully around

4:14

these topics. I love it.

4:16

And so, you know, you are obviously

4:18

doing a lot of like, thinking a

4:20

lot of research, a lot of academic work

4:22

in this area, but you're also writing

4:25

books for a public

4:27

audience and doing a lot of kind of public

4:29

education. And I'm curious, you know,

4:32

your own experience, has this been what

4:34

inspired you to try and help

4:37

individuals kind of, you know, well-meaning people

4:39

know that they're sort of being assholes

4:41

sometimes? Like, how, like, what got you

4:44

to want to like, have these conversations

4:46

with the public? You know,

4:48

I'm really lucky that

4:50

I was actually approached to write this book

4:53

by, by North, by editors at Norton.

4:55

I'm, I'm incredibly grateful for the

4:57

opportunity to have sort of a

5:00

larger platform than I would usually have as

5:02

someone publishing in academic circles, to

5:05

talk about some of these topics. But I've

5:07

been talking about them, you know, with my students for

5:09

a really long time and, and trying to bring people

5:11

into these topics with understanding.

5:13

And, you know, a lot

5:15

of what we read is usually like, works

5:18

from disabled people, right? If I want you

5:21

to know what the experience of disability is

5:23

like, if I want you to think critically

5:25

about technology for disability, then a lot of

5:28

what you read sort of external to disabled

5:30

conversations is, has probably misled

5:32

you. So this is a thing I

5:34

encounter a lot in my teaching. And I am

5:36

really lucky

5:38

to get sort of a larger platform

5:40

with a trade publication, like

5:43

against techno ableism to, to have this

5:45

conversation, you know, more broadly, but I

5:47

think it's one that a lot of disabled people

5:49

in community, you know, are having together.

5:51

And I talk a lot about different

5:53

disability communities within this book

5:55

and, and sort of, you know, I'm

5:58

drawing heavily from things written by disabled

6:00

people. people and advocacy

6:02

by disabled people. I

6:04

think so often when we talk

6:06

about technology, we look to

6:08

sort of researchers and scientists as

6:11

experts, but

6:13

they aren't living with the technologies every

6:15

day in the case of disability technologies,

6:17

right? They're not grappling with how society

6:19

sees them and stigmatizes them for

6:23

being disabled. So they don't

6:25

really have the same experience of the technologies that

6:27

disabled people often do, although some

6:29

disability tech researchers are also

6:32

disabled. That's not to discount

6:34

their inputs there. Right.

6:37

And I guess before we even dive into sort

6:39

of this important, not

6:42

just philosophical, but practical conversation

6:44

about technology and

6:47

its promises, its

6:49

perils, its frustrations,

6:52

and kind of the places where it is really,

6:55

really helpful and beneficial and the places where it's

6:57

really, really overblown and there's sort of a,

7:00

I don't know, I don't know what the

7:04

right word I'm looking for is, but

7:06

sort of like a white knight effect

7:08

of technology. But before we dive into

7:11

that, I'm curious to maybe just talk

7:13

a little bit about the disability communities

7:15

that you've worked with, the research that

7:18

you did for this book, and

7:21

also your own sort of experience. I think the

7:23

thing that comes to mind for me, thinking

7:26

about my friends and my connections,

7:28

is the deaf community and the

7:30

big argument or the big

7:32

kind of conversation that's often had

7:34

about, let's say, cochlear implants in

7:36

the deaf community. And that there are

7:39

a lot of people in the deaf community who are, identify

7:41

as deaf, who

7:43

are proud to be deaf, who are not interested

7:45

in being hearing individuals that

7:47

have a culture and a language

7:49

and a really, really rich life

7:51

without the need for technology. That's

7:54

sort of what brings to mind when I see a

7:56

book like this, against TechnoA. ableism,

8:00

rethinking who needs improvement. Was that

8:02

part of the inspiration at all?

8:05

Absolutely. So

8:07

even before I was

8:11

a disabled person and I was teaching bioethics

8:14

type courses, we were learning what I wanted

8:16

to teach people when I was teaching, say,

8:18

a class on cyborgs or

8:20

a class in some topic in

8:22

medical dilemmas. I often use this

8:25

case study of cochlear implants in

8:28

deaf communities and had us read from

8:30

deaf scholars, from

8:32

deaf activists, about this

8:34

sort of conversation about

8:36

cochlear implants. So I don't spend a lot

8:39

of time in this book actually talking about

8:42

those cases. I have a couple pages that

8:44

I was asked to put in because

8:46

it was a noticeable, like in one of my

8:48

versions, like I just didn't include a lot on

8:50

this topic because I think there's so much that's

8:53

really good and written on this topic about

8:55

different perspectives on hearing aids and

8:58

cochlear implants within different segments of

9:00

the deaf community. So for me,

9:02

it's like, oh, yes, I agree.

9:04

This is really interesting.

9:08

And I point to some of

9:10

those conversations and just like a

9:12

longer history. So Jay

9:14

Preet Verde, who's at University of Delaware,

9:17

has this book, Hearing Happiness. And it

9:19

goes through all of these different hearing

9:21

cures throughout history, like in history. So

9:24

she takes the advertisements of all of

9:26

these cures for deafness, all of these

9:28

devices, all of this stuff

9:30

that is a little snake

9:33

oily and looks at how it's advertised.

9:35

And for so many of those conversations,

9:37

it's like, this will cure you, right?

9:40

That the answer to deafness is always a

9:42

cure if you look at sort of advertising

9:44

history, right? Like there's something wrong

9:46

with you that needs to be

9:48

fixed. Yes. And she even reflects on

9:51

this in the book that like, it

9:53

is something to always be scrutinized in that way,

9:55

to show up wherever you are. And people

9:58

like think you're deficient. or

10:00

think you need to be like think you need this

10:02

intervention, even if things are like going well in your

10:04

life and you're getting along fine, they

10:06

still think that there's this thing. When I see

10:09

that so many times with different types of technologies

10:11

as well, I feel like there's good literature, um

10:14

on this around deafness um,

10:16

and there's been like different like historical

10:18

episodes that we could talk about, um

10:20

in terms of um hearing technologies but

10:23

but I think there's a much broader

10:25

story about how we imagine

10:27

disability and how we imagine technology that this is

10:29

just like one example of. Yeah,

10:31

and I think for for many

10:33

people who don't have a lot

10:36

of experience with different disability communities,

10:38

my hope is that individuals listening to

10:41

the show have at least heard of

10:43

that conversation around, um around

10:45

the deaf community and like deaf pride, you

10:47

know, and and sort of the the

10:50

deep and rich culture that exists within the

10:52

deaf community or within many, I shouldn't say

10:55

the deaf community, but many deaf communities. Um,

10:57

my hope is that for a lot of people they've

10:59

at least heard of that and that's sort of like

11:02

a like an entree because the I think

11:04

the the sad truth of the matter is

11:06

the things that you cover in your book

11:09

may be very new to a

11:11

lot of people because culturally, sadly,

11:15

we have a very dark history of bringing

11:19

disability into the shadows and kind of keeping it

11:21

out of the light. And so a lot of

11:23

people just don't have exposure. Yeah,

11:26

I feel like a lot of times disabled, uh, people

11:29

are pushed out of the way in a lot of these

11:31

conversations. 100%. You know whether intentionally or not. I

11:35

mean, non-disabled people have usually and often

11:37

still are considered

11:40

experts about disabled people, right? So we talk

11:42

about sort of like diagnosis and sort of

11:44

like the systems that you're put through and

11:46

sort of like therapy professionals

11:48

and how they might look at you. Um,

11:51

you know this sort of longer

11:53

history of um, like paternalism, um,

11:56

that goes on in so many realms that. That's the word

11:58

I was looking for earlier by the way. I

12:00

was like, what? No, paternalism.

12:02

That's definitely it. People think that they

12:05

know best if you're disabled,

12:07

right? And they don't actually listen to you about

12:09

your experience. One of the things that I think

12:11

is really interesting about hearing technologies is

12:15

that so many

12:17

times when these conversations

12:19

are happening, if they're happening, we

12:23

don't even get a real story about what the technology

12:25

is like. So sometimes, if

12:28

you just listen to the advertising, oh, this

12:30

new hearing aid, this new gadget, cochlear

12:33

implants are just one example. But even when

12:35

we're talking about hearing aid advertising, and I

12:37

wear hearing aids, they're not bad, but

12:39

they're not everything everyone thinks they are. That

12:43

it's just I put them on, and all of a

12:45

sudden, everything is like it was

12:47

before. There are

12:49

issues of maintenance and where I,

12:51

even wearing my hearing aids now,

12:56

directionality is completely lost. I don't know

12:58

what direction any sound is coming from.

13:00

It's just in both my ears. I

13:03

remember when my mom started wearing hearing aids,

13:07

this idea of just

13:10

the calibration, the readjusting

13:12

to it, and also

13:14

going back into the audiologist over and over

13:16

to calibrate. I remember her telling

13:18

me I would have to take them out on walks

13:21

because just the crunching of the leaves under my feet

13:23

was so noisy, and I couldn't hear people's voices. The

13:27

stratification of sounds was completely

13:29

off, and it became very

13:31

overwhelming. Yes.

13:33

They don't tell you that. I think

13:35

about how cochlear implants got released, and

13:37

even all the videos we see of

13:39

kid gets their

13:42

cochlear implant turned on for the

13:44

first time, and then the

13:47

kid lights up and looks at their

13:49

mom. That's not

13:52

that common of an occurrence,

13:54

and we made you think that this is just

13:56

a narrative, but also it covers over the fact that

13:59

that kid... We'll

14:01

be going through a lot of speech therapy.

14:04

We'll be going through a lot of therapy

14:06

about how to listen through that

14:08

device. We'll be caught

14:10

up in a web of

14:12

insurance and audiology and

14:14

technology for the rest

14:16

of their lives. It

14:19

doesn't highlight the fact that they probably won't be able

14:21

to get an MRI because of the metal

14:23

pieces in that cochlear implant if they ever

14:26

need one. There's

14:28

all this, at least in the

14:30

early days, there are some that actually can go

14:33

through MRI machines now, but you should check beforehand,

14:35

obviously. Even the quality of

14:37

sound. I have a deaf

14:39

friend who has some implants, and I

14:41

can't remember the specific type of implant

14:43

she has, but she's like, everything sounds

14:45

robotic. It's not like you think it's

14:48

going to be. Sound

14:51

to me is different than sound is to you. No,

14:54

and a lot of times it feels like we're sold a

14:57

bill of goods. We're supposed to

14:59

be rejoicing about this technology, and we're

15:01

supposed to be very grateful. Often

15:05

when people critique disability-related

15:08

technologies, when disabled people say, oh, this

15:10

isn't as great as you think it

15:12

is, there's a

15:14

resistance against that. Oftentimes, disabled people

15:16

are painted as bitter if we

15:18

complain about something or not appropriately

15:22

grateful. We're

15:24

supposed to be representing the future in

15:26

the minds of many people, especially when we

15:29

have visible implants and things

15:31

like that. This is a futuristic look,

15:34

and for us to inform them

15:36

that the future isn't going to go as smoothly

15:38

as they hope. Ah,

15:41

yes, like an insult. Also,

15:43

right back to the paternalism you mentioned,

15:45

this idea of, you poor thing, I

15:47

gave you a thing that made you

15:50

better. Why are you complaining? It's

15:52

gross. It really

15:54

is. It's not just

15:57

that this happens in a clinic.

15:59

where I'm trying to get a better piece of

16:01

technology, right? Like where,

16:03

you know, I really like my prosthetist

16:06

because he always encourages me to complain

16:08

so that we can get it right, right? Like that is

16:10

a good attitude on the part of a provider. But even

16:13

if I go out in public, like, you

16:15

know, if I've fallen, which I've done, you

16:17

know, a number of times and I can't

16:19

wear my leg or if my limb is

16:21

swollen and I can't get it on and

16:23

I'm appearing in forearm crushes, like people

16:26

are a lot more unsettled by

16:28

my presence because I'm not

16:30

wearing a prosthesis. Like I'm

16:33

read differently, I'm checked out differently. People

16:35

may ask me why I'm not wearing

16:37

my leg. You

16:39

know, for some amputees who don't have prosthetic

16:41

devices because they're expensive and require maintenance and

16:44

not everyone's gonna want one. So there's like

16:47

that kind of thing that goes into it.

16:49

Like I think my leg is very convenient.

16:51

I like wearing it, but indeed there are

16:53

plenty of days, I might consider

16:55

not wearing it because of what I'm doing and

16:57

discomfort and things like that too. So

17:00

there's this like, you know, I

17:02

encounter people in the public and I know some of

17:04

my amputee friends who talk about this, like, you

17:07

know, not wearing what they want you to

17:09

wear, right? Is actually

17:12

like they ask you, yeah, why

17:14

aren't you wearing that or what's wrong or,

17:16

you know, invasive

17:18

questions sometimes about

17:20

your body and your choices and the tools

17:23

you would prefer to use. And,

17:25

you know, not every trip to the grocery store

17:27

is an interview opportunity. I'm

17:32

often when I'm doing this show, right? As the

17:34

sort of conduit between the audience and the individual

17:36

that I'm talking to, I'm always in

17:39

my head running through analogies,

17:41

comparisons, personal experiences. Like

17:43

I'm always trying to

17:45

find connections. And one of the

17:48

things that comes to mind, which is obviously

17:51

minimal, but hopefully for

17:53

individuals who have zero experience and who

17:56

are sort of lacking,

17:58

I think, in some. of the social

18:00

crisis that might be involved in this

18:03

kind of education, I think about

18:05

something as simple as glasses, right? A lot

18:07

of people wear glasses, and some people want

18:09

to wear contacts, and other people don't want to

18:11

wear contacts, and some people want to just wear their glasses, and

18:13

other people don't. And some people are

18:15

like, I don't feel like wearing either today because they're bothering

18:17

me, and other people are like, I'm really rigid about my

18:19

contacts, and I wear them every single day, and I take

18:21

them out every single night. And

18:25

that's a choice, because sometimes they

18:27

make your eyes itchy, and sometimes you're too tired, and

18:30

sometimes it just doesn't feel right. I wear glasses, I

18:32

don't like contacts, I can't stand the way they feel

18:34

in my eyes, so I've never worn them. I have

18:36

a friend who religiously wears her contacts.

18:38

She hates wearing glasses, she hates the way

18:40

they feel on her face. And

18:43

that's a kind of, it's

18:46

almost like a mainstream disability

18:48

light that almost a lot of people can

18:50

relate to, and I don't see how that's

18:52

any different than something like a prosthetic, but

18:54

for some reason, we magnify

18:57

and amplify and act

18:59

like your prosthetic

19:02

is, or your prosthesis

19:04

is somehow like has to do anything

19:07

to do with me. Yes,

19:10

no, I think that's a great

19:12

example. I mean, and part of it is just

19:14

we've come to view glasses

19:17

as fairly normal on a thing.

19:19

Yeah, we've normalized. They're ubiquitous enough,

19:21

everyone knows people who wear glasses,

19:23

and more than one. So

19:26

many times, if you are someone

19:28

who is an amputee, people might

19:30

only know you. Yeah,

19:32

I only have one kind of friend or colleague

19:34

that's an amputee that I know of. I

19:37

now know you, which is great, but we haven't met in

19:39

person. But yeah, I only

19:41

have one in my, and then that

19:43

becomes the token, right? That becomes the

19:45

example for every experience, and that's not

19:47

fair. Too much pressure. It's

19:50

a lot of pressure, right? If you

19:52

are the delegate from the amputee community

19:54

that they might know and talk to,

19:57

I mean, I think about

19:59

this quite often. because we

20:01

shouldn't have to be like model citizens

20:03

at all points in our lives just

20:06

to exist as disabled in public. Ending

20:09

an amputee isn't even that rare, right?

20:12

I can think about other disability

20:14

types that are far rarer, and

20:17

amputees come in all sorts

20:20

of different levels, different functionalities,

20:22

and different causes of amputation.

20:24

We're a pretty diverse set,

20:27

and it's still something

20:29

where people, what

20:32

I do, they will say this is how amputees are

20:34

even if it's just me. And

20:37

do you find that people, I mean, I see

20:39

this with my trans friends a lot,

20:41

or even my non-binary friends, where people

20:43

will ask the most probing questions, like,

20:45

well, how'd you lose your leg? I

20:48

don't know you, dude. You don't deserve

20:50

that information. Is that a common thing you have

20:52

to deal with? Oh, yeah. And

20:56

for me, I mean, I

20:59

lost my leg to bone cancer,

21:01

right? So it's like the answer

21:03

is not great, because they

21:06

want a manly story, right? You

21:09

were fighting a bear, yeah, shark bit it all. What

21:12

they want is something dramatic or cool, or they want

21:14

to find out that I was in the military so

21:16

they can thank me for my service. It's

21:19

a really common thing for amputees to be thanked

21:21

for their service, even though most

21:23

of us aren't losing our lungs that

21:25

way. And

21:28

then it's a really awkward conversation where you have to

21:30

say, well, no, I didn't lose it in the service,

21:32

and then, you know, what does that mean? But

21:34

my answer is like cancer. And I like

21:37

it because it's like I'm

21:39

not, and like, cancers make up

21:42

a very small percentage of amputees, so it's

21:44

not something that they have a canned answer

21:46

for. Except like sometimes it's very

21:48

confusing to them, like how do you lose a leg from

21:50

cancer? They

21:52

can imagine other body parts going,

21:54

like mastectomies and things like that. So

21:58

I usually just try to walk away quickly. quickly

22:00

after I say cancer and leave them

22:02

to puzzle. Right. But also

22:04

it's a thing, right? Obviously,

22:07

we all have our own experiences. Listeners know

22:09

that last year I lost my uterus to

22:11

cancer. That is so

22:13

personal that I chose to talk about it

22:15

on air, but I was the driver of

22:17

that conversation. I do not want anybody

22:20

to put me in a position where I

22:22

have to go there on

22:24

a grocery trip. That's just not, like

22:27

you mentioned before, that's maybe not the topic of

22:29

conversation you want to be having in the produce

22:31

aisle. No.

22:36

I always felt like I could talk about my

22:38

cancer pretty freely with my friends and family and

22:40

things like that because in some sense it's a

22:42

leg cancer. I know you talking about a reproductive

22:45

cancer. I

22:48

know a lot of people, especially with

22:51

reproductive cancers, but then also intestinal cancers,

22:54

colon cancer, I feel

22:56

like are harder topics

22:58

for a lot of people just because

23:00

of stigma and questions that arise from

23:03

these sorts of things. But they're also hidden. Good for

23:05

you. But I'm sorry that we're in this boat together.

23:08

Right. I think that opens

23:10

up a conversation about hidden

23:12

disability. I don't consider myself

23:15

part of a disability community and I

23:17

don't know why that is. Obviously, that's

23:19

something that I would need to dig

23:21

deep into. Maybe it's because it's pretty

23:23

new. Maybe it's because I am

23:25

missing an organ now that disallows

23:27

me from engaging in certain, like I

23:29

can't have a child. That's just part

23:32

of it. But I've

23:34

never really thought of it in that way. Maybe

23:36

just because that's not how society has often framed

23:38

it. But there are people

23:41

with hidden disabilities. We

23:43

see people walking around with a service

23:45

animal or utilizing a disabled

23:48

bathroom stall. Just because

23:50

they don't look the way you anticipate they

23:52

would look, they're not in a wheelchair, does

23:55

not mean that you

23:57

should be questioning the decisions they're making.

24:00

No, I mean, I feel somewhat lucky in

24:02

that I am like my disability

24:05

is a parent and it's

24:07

not stigmatized as heavily as some

24:09

other types of disability, which is

24:11

not to say that there's not

24:13

like there's weird social expectations, but

24:15

I'm not like demonized, right, for

24:17

being an amputee usually. And

24:20

I find like it's somewhat

24:23

a relief, like people can be mean mugging

24:25

me when I pull into disability parking, but

24:27

if I get out, and of course they

24:29

look me over very carefully if I get out of

24:31

my car and I've been in disability parking, like they

24:34

go, oh, like there's like an O in their head.

24:36

And then I'm not assaulted in a parking lot

24:39

like some disabled people are with

24:41

non-apparent disabilities who go out in

24:43

public. It's

24:45

heartbreaking to think that that happens

24:47

on the regular basis. Like, I

24:50

don't know, it just reminds me of this society's and

24:52

I know I'm going a little off topic, so I

24:54

don't have to spend too much time here, but it

24:57

reminds me of this very American individualist,

24:59

manifest destiny perspective that you sometimes hear

25:01

when people are like shit

25:04

talking homelessness or they're shit talking

25:06

individuals who use government assistance as

25:08

if it's like a gift, like,

25:10

oh, their lives are so easy

25:12

or oh, they're just taking a hand

25:14

out and you're like, do you don't want to be

25:16

in that position? Do you understand what

25:19

these individuals are dealing with? But no,

25:21

there's no empathy there. So it's almost

25:23

like, why is somebody mad that somebody

25:25

who has a disability that they can't

25:27

see is using a parking

25:30

space that's slightly closer? Because they want

25:32

to park there? Like, how

25:34

gross can you be? No,

25:36

I mean, absolutely. And I see this

25:38

quite often because people will want to

25:40

tell me about them protecting

25:43

disability parking because I'm a disabled person. So

25:45

occasionally I enter into these conversations where people

25:47

want to like tell on people

25:49

who have

25:52

non-apparent disabilities who are using

25:54

disability related things, like as

25:56

if they're champions for me.

26:00

And that's, I have

26:02

to like explain, non-apparent

26:04

disabilities are just as real. And

26:07

like a lot of people have pain

26:09

that you can't see or something like

26:11

COPD or will like become breathless. They

26:14

need that closer parking that

26:16

anyone would scrutinize someone using it is

26:19

really just absurd to me. But

26:22

there are people who consider themselves disability

26:24

allies who really want to get in

26:27

there and scrutinize other people for you.

26:29

And I find it really ugly actually.

26:33

It is, I agree. It is very ugly.

26:36

And I think it calls

26:38

for a lot of kind of

26:40

looking inside oneself and asking oneself,

26:43

why am I having this reaction in this moment?

26:45

Why do I feel this way? Why, if I

26:48

feel like I'm trying to be a champion, how

26:50

much of that is paternalistic of me? How

26:52

much of this like virtue, this thing that I

26:55

see as a virtue is actually a lot

26:57

darker than I want to admit. And I think

26:59

that's important work that we all have to do

27:02

on ourselves. Yeah, yeah. So

27:04

many narratives about disability tell us that

27:07

we should be helping disabled people, right?

27:10

Like this, this exists, yeah. It

27:12

exists in lots of different literature. I

27:15

mean, A, there's like a dearth of authentic

27:18

disabled representations. So when we do see

27:20

disabled characters, they're often

27:22

written by non-disabled people, imagining

27:25

non-disabled people, acted by

27:27

non-disabled people who aren't

27:29

like, who

27:31

often posit like helping disabled

27:34

people as like a nice thing for like a

27:36

main character to do to show that they're nice.

27:39

Right, yeah. Like all people with

27:41

disabilities are like damsels in

27:43

distress. And so, yeah, they

27:45

need to be like this virtuous person to help

27:47

them. Well, and we see this all the time

27:50

echoed in our media too. I loathe

27:52

prom season. And

27:55

I loathe it because a disabled

27:57

person getting a date to a school

27:59

date. dance is not remarkable.

28:02

Right. It's not charity. It's

28:05

embarrassing. I can't imagine being that

28:07

disabled person like 10 years later

28:10

going, oh, it was so

28:12

nice that they brought me to the dance and then

28:14

they did this whole story about how

28:16

nice this person was to ask me to

28:18

the dance. No, I mean, that's embarrassing, right,

28:21

to be the object of so much scrutiny and

28:24

to like, I

28:26

would like trying

28:28

to think back on being a teenager,

28:30

like the idea that it

28:32

was newsworthy, that someone like

28:34

pitied me and took

28:37

me a place and

28:39

that it was something like that the other

28:41

person was praised for. Like it's

28:43

really ugly to paint

28:46

that scenario that way. But we have like so

28:48

much literature that does this very

28:50

thing. I

28:53

think about Harriet McBride Johnson who wrote an

28:55

Accidents of Nature, this lovely

28:57

book about disabled kids at a disabled summer camp where

28:59

one says to the other, I wish there were just

29:01

one story in the Bible where the crypt didn't get

29:04

cured so that people would leave

29:06

me alone. Right,

29:08

with implication that like they've heard

29:10

all of these stories. So their

29:13

thought is that all disabled people

29:15

need help, need intervention, want a cure.

29:18

And that is like the end

29:21

goal for disabled people. Instead of

29:23

like having normal life, having

29:26

families, going

29:28

the same places everyone else does,

29:31

riding amusement park rides, whatever

29:34

your goal is, but

29:36

just to be included in normal things instead

29:39

of like constantly exceptionalized. The

29:43

word that comes to mind, like I'm

29:46

hearing these themes over and over, obviously

29:48

paternalistic is one that we've kind of

29:50

touched on multiple times. The

29:52

one that's coming to my mind right now, and it's

29:55

dark, but it's, I don't know,

29:58

it's what everything is pointing to. It's like

30:00

de-healing. humanizing. Like, it's really

30:02

deep. You know, I think

30:04

about the genocidal playbook. I think about

30:06

the historical wrongs and how

30:09

easy it is for a large group,

30:11

I think about what's going on in Palestine

30:14

right now, just how easy it is

30:16

for a large group of people to

30:19

sort of buy into

30:21

propaganda over a long enough time.

30:24

And all of a sudden, certain people

30:26

become less people than other people. And it

30:28

becomes easier to do certain things to them

30:30

or to treat them certain ways. And

30:33

I think that the disabled community

30:35

has, for a very long time,

30:37

maybe all of human existence, I

30:39

don't know, been just leveled

30:42

down, just dehumanized, just enough that

30:44

people look at them like

30:48

less than. Yeah. And

30:51

I, you know, thinking of all

30:53

time, I mean, our category of disability

30:55

is somewhat new. Right. So

30:59

it's actually a really interesting

31:01

question. I would say, like,

31:04

some types of disabilities were just not,

31:07

like, recognized or they were viewed

31:09

differently. Right. Sometimes maybe they

31:11

work. So that's why they have a category into

31:13

which so many people would fall until

31:16

we have, like, industrialization and

31:18

notions of work that end up making

31:20

it so that we gel together, like,

31:22

well, who can't stand at this

31:25

machine for 12 hours and make nothing

31:27

but widgets, you

31:29

know, in some sort of physically demanding conditions?

31:32

Well, then you start to form

31:34

a category of people that, like, often falls

31:36

around the lines of disability. So I think

31:38

about it like the creation in terms of

31:40

work. Yeah, it's interesting. I think

31:43

of, like, indigenous communities or individuals

31:45

who might have had, like, let's

31:47

say sensory disability, somebody who had,

31:49

like, a visual impairment and

31:51

they may have been viewed as an

31:54

individual because of, like, heightened senses in

31:56

other ways or because of different ways

31:58

of seeing as somebody with wisdom. or

32:00

as somebody that we would turn to as

32:02

an elder in the village to help us

32:04

make decisions because that capitalist

32:06

expectation wasn't necessarily there. So

32:09

it's interesting, yeah, thinking of

32:11

historically, there may have been

32:13

a dehumanizing category for certain people and there may

32:15

have been elevated spaces for other people. And then

32:17

other people, it might have just been like, Yeah,

32:19

there's this great book called, it is what it

32:21

is. Yeah, so there's this

32:24

really cool book called, this

32:26

is from a while back called The Social Lives

32:28

of Dwarfs. And it

32:30

is about how people have regarded little

32:33

people throughout history because we have records, and

32:36

it's something that you can track in the fossil record,

32:38

say if little people existed

32:41

in the society. And there

32:43

are, once we have

32:45

writing and pictures, the

32:49

sort of different views different societies had. But

32:52

not all of them were like along

32:54

the lines of disability that we see

32:57

today. So that's one category that has

32:59

some treatment. I also think about Kim

33:01

Nielsen's disability history of the United States,

33:03

where the sort of early chapters are

33:05

about pre colonization

33:07

United States. And

33:12

sort of like we don't have, there

33:15

might be terms for individual disabilities, but

33:18

they don't have the same connotations. And it's

33:21

not like, they don't have a word for

33:23

disability, as we think about it. And, you

33:25

know, some of their terms that we might

33:27

map on to some types of disability, they

33:29

don't come with the same negative connotations that

33:31

they might later on. Interesting

33:34

to think about like, disability is a

33:36

cultural phenomenon as well. It

33:38

really is. And I mean, I think

33:40

it's a good transition to the focus

33:42

of this book and the focus of

33:44

some of your work in bioethics about

33:46

technology and the role of technology and

33:48

sort of the promise and the peril

33:50

and the, like we talked about before

33:52

the who is at the sort of

33:54

helm, like who's making the decisions about,

33:56

you know, I want to make the

33:58

decisions about what what's best for me personally.

34:01

I don't want somebody else to tell me what's best

34:03

for me. And technology is,

34:05

obviously it's a category, right? It's

34:09

a tool, like anything else. My

34:14

glasses are a form of technology and

34:16

I'm really, really grateful that my glasses

34:18

exist. And so there

34:20

are technologies that are available that

34:23

are life-changing for people. I mean, you mentioned your

34:26

prosthesis, like you like

34:28

it, it makes your life easier at the same time,

34:30

there are days when you don't want to wear it.

34:32

And so I'd love to dive into this really complex

34:35

kind of world of disability

34:37

technology and really, what brought

34:39

you to the focus of this book? Why you

34:41

chose to write about it and kind of how it, I

34:44

don't know, I know that you were asked to

34:46

write about it, but what was it that told

34:48

you to be important? I mean, I

34:51

was asked to pitch, right? To

34:53

see if this was worth pursuing as a

34:55

popular book, but I had

34:57

a sort of another book project that was

34:59

centered in the same way that I sort of

35:02

moved over to talk

35:05

about and to fit in

35:07

this case. And I think, I

35:10

guess I'm a technologized disabled person. I

35:15

mean, I've talked about myself as a cyborg in different

35:17

contexts, I really like that. And

35:21

I'm also at the same time

35:24

being a disabled cyborg, being

35:27

a disabled person, someone who's

35:29

using technology, like none

35:31

of the stories I hear about

35:33

disability technology outside of the disability

35:35

community ring true. Right,

35:38

none of like, it

35:40

all seems like PR and advertising. And

35:42

even when there are like Ted talks

35:44

about disability technology, a lot of times

35:47

it's really to sell me something, right?

35:49

Like they're showing me like how great

35:52

something is, but then sometimes I experienced

35:54

those things and they're

35:56

never as great as everyone wants them to

35:59

be. or as advertised. So

36:01

I think there's this real disconnect where

36:04

where we're getting the story about technology

36:06

that's incorrect, right? We really want technology

36:08

to be a redemptive force for

36:11

disabled people, but for the world at large. And

36:14

I feel like that plays out in a smaller scale in

36:17

every single story told about disability

36:19

technology is that technology is

36:21

going to redeem us, cure us, help

36:24

us overcome that what

36:26

we need is more like venture capital in

36:29

different areas, constant research

36:31

investment in

36:33

ways that don't necessarily align with

36:36

community values that

36:38

continue to let infrastructure crumble and fail

36:40

us. It doesn't take account of

36:43

disabled people who exist today if the

36:47

project is so far away. And

36:49

we're asked to worship technology as

36:52

the road forward around disability

36:55

instead of talking about infrastructure,

36:58

which I think is also technology, but

37:01

is usually you don't see the

37:03

exciting news stories about oh,

37:05

they're going to make elevators cheaper. They

37:07

never do. But these

37:10

sort of infrastructure projects get

37:12

completely glossed over and you

37:15

know, so many technologies only make

37:17

sense within a particular social and

37:19

environmental niche. Right. You

37:22

know, what I need to do depends on the

37:24

environment I'm in. It's interesting

37:26

because I was thinking, you know, like this whole

37:28

time I've been thinking of infrastructure as a form

37:30

of technology. So there's always been this voice in

37:32

the back of my head that's like, yeah, but

37:34

ADA. Yeah, but ramps. You know, like,

37:36

aren't we happy about this stuff? But at the same time,

37:39

it's like culturally, we

37:41

do seem to and I didn't

37:43

even really think about this, but we do seem

37:45

to make a distinction between sort of like technology

37:47

for the individual versus Yeah,

37:50

infrastructure changes for all like accessibility

37:53

for all. Oh, and I think the

37:55

dream of people you know

37:58

in this space I think about some of like the

38:00

transhumanist rhetoric. I think

38:02

about, you know, some

38:04

people who just think the ADA

38:07

solved all of our problems. Right.

38:09

Everything's better now. Yeah. Yeah.

38:12

You know, that's not most

38:14

disabled people's reality. But

38:16

I also think there's this sense that we

38:18

really want to force disability

38:21

to be an individual issue when it is

38:24

one that is much more

38:26

attached to society

38:28

and environment in ways

38:31

that really are glossed

38:33

over for if the

38:35

account of disability is that

38:38

disabled people need

38:40

to get this one technology or

38:42

set of technologies for their own

38:44

body and bootstrap themselves up into

38:46

some sort of passing or more

38:48

typical existence. Making it

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And Duncan thinks you deserve a reward.

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Give now at

39:48

nationwidechildrens.org/give. Yeah,

39:52

yeah, this, you know, I think about

39:54

this is another weird, half

39:56

baked analogy that I'm coming up with.

39:58

So I might stop. myself halfway through if

40:00

I'm like, yeah, that doesn't work. But I

40:03

think about my friend Beth Pratt, who

40:05

is the California lead of the National Wildlife

40:07

Federation. She's been on the show a bunch of

40:09

times. She's sort of responsible for

40:12

our hometown hero in Los Angeles, P-22.

40:14

He's a Puma who recently

40:16

died. It's sort of responsible for his

40:18

fame, if you want to call it

40:20

fame, and raising

40:22

awareness and raising a lot of money

40:25

to build a wildlife crossing across some

40:27

of the busiest freeways in the country, so

40:29

that these animals who

40:31

are so majestic and incredible can

40:34

actually connect to other

40:37

pockets of animals and breed and

40:39

roam freely, instead of just constantly getting hit

40:41

by cars when trying to cross the freeway.

40:44

Okay, so the thing that really

40:46

strikes me when I think about

40:48

these wildlife crossings being built is that it's not

40:50

just the Pumas that use them. The

40:52

birds fly over the green belt. The

40:55

other mammals are

40:57

like, oh, this seems like a great way to go

40:59

over there, which is where I've always wanted to go, but I've

41:01

been too scared because of the cars. And what

41:04

ends up happening is this entire ecosystem utilizes

41:07

this infrastructure, and it

41:09

actually improves connectivity and the ecology

41:11

for the entire area. And you

41:13

think about infrastructure,

41:15

like disability-oriented infrastructure, ADA,

41:18

and like, okay, let's build ramps so

41:20

that people who use wheelchairs can

41:23

get up to the door. And now all of

41:25

a sudden, look at all the other people using

41:27

the ramps, because I didn't realize grandma's hips are

41:29

kind of sore, and it's kind of hard for

41:31

her to take the stairs. And now this baby

41:33

can learn how to walk more freely without mom

41:35

having to take her up every single stair. And

41:37

this dog that's getting

41:39

a little older, it's easier for him to use

41:41

the ramp. And all of a sudden, it's just

41:43

like, duh, it's better for the entire

41:45

community. Yeah, yeah, no,

41:47

I think the focus on these

41:50

sort of individualized solutions

41:52

without putting disability in context, like so many of the

41:54

barriers, I thought we were going to go a different

41:57

way with this example. about

42:00

it. Yeah. So I thought, so you're giving

42:02

an example of the curb cut effect, right? Like once we

42:04

build it for disabled people, lots more people enjoy it. And

42:07

that's great. But I thought you were going to say, That's

42:09

the name for that. See, I'm so out of the loop. I

42:14

thought you were going to say, we made

42:16

this problem. We built this highway. And

42:19

we're the ones who have caused this problem.

42:21

And when I think 100% That's

42:23

also true. Oh, that's yeah, glossed over that

42:25

completely. That is central to this issue. We

42:28

are killing these cats because we need to

42:30

drive our cars. Really? I do

42:32

think there's this like, I love the analogy

42:34

for both reasons, actually. So thank

42:37

you for that. So there's this

42:39

curb cut effect that people talk

42:41

about sometimes. You

42:43

know, people often posit universal design as

42:46

ways to, you know, overcome bad design.

42:50

But I also think about like, a lot of

42:52

times, like what we're setting up to begin with

42:54

is made hostile. I mean, I

42:56

think about this in terms of because I use universal

42:59

design for learning to create my classes,

43:01

you know, I think about sort of, you know,

43:04

what is unnecessary about how I used

43:06

to teach before about how I see

43:09

people, you know, how they structure their

43:11

classes can make it harder for some

43:13

people to participate can make

43:15

it harder. You know, I think

43:17

about different learning disabilities that sort of pop

43:21

out in the chaotic, like,

43:23

because of how we do education.

43:26

Right, because, oh, we need everyone to

43:28

sit still in a circle. You

43:30

know, we demand this in kindergarten, you know what

43:33

that means for students who can't. Right,

43:35

like how many of these barriers? Yeah,

43:38

are, are sort of just natural, and

43:40

there are natural barriers, you know, you

43:42

think about the natural landscape, like a

43:44

national park, for example, there are paths

43:46

for a reason, so that people

43:48

can see the beauty of the end, and

43:50

then all of a sudden, your car can't

43:52

make it off road, you know, like we

43:55

just can't pass there. And so there are

43:57

natural barriers, but there's so many creative barriers

43:59

self imposed. barriers. Like we built

44:01

it a certain way and very

44:03

often for the ideas

44:06

of what you know some like let's

44:08

say white, cis, het, male, Protestant, whatever.

44:10

I can list a million different intersectional

44:12

normative adjectives. You know it was built

44:15

by this person because that's what they

44:17

saw as what should be normative and

44:19

then everybody else was expected to sort

44:22

of like bend to it

44:25

and that's an unnatural barrier. It is

44:27

and I think about disability often as

44:29

being like what undergirds

44:33

a lot of ideas

44:36

around white supremacy, about racial

44:38

science, about like when we

44:40

talk about immigration conversations as

44:42

well. I mean the role

44:44

that IQ and intelligence

44:46

and ideas about that have influenced

44:48

like hierarchies we've set up around

44:50

people that have influenced our design

44:52

like even who we take as

44:54

people. We talk about like the

44:57

history of photography right like

44:59

which you know which people are easiest

45:01

to photograph even now right. You

45:03

know I love the video I don't know if

45:05

you've seen the HP is racist video. It's

45:08

from a while back but it

45:10

it was two co-workers Black Desi

45:12

and white Wanda and they

45:15

are they got a new

45:17

Hewlett Packard computer in and they're playing with

45:19

it and they you know are taking a

45:21

video and it keeps zooming in on white

45:23

Wanda every time she's in the frame because

45:25

it's like supposed to recognize faces and

45:27

every time every time Desi's there it just

45:31

doesn't recognize him at all and I think

45:33

about like this longer history of like who

45:35

we care to see that sort of plays

45:37

out in a longer history and I think

45:39

about this you know in terms of

45:41

you know who is

45:43

important who do we think we should listen to

45:46

who should we focus in on and like literally

45:48

focus in on if we're talking about

45:50

camera technologies but then

45:52

also you know who who

45:54

gets to set the conversation after

45:56

that. Yeah and

45:59

you know You also think

46:01

about what the future looks like for all

46:03

of us because of these decisions

46:06

that we've made, because of this sort

46:08

of intentional or

46:10

not consumption,

46:12

this intentional or not destruction

46:15

of our natural

46:17

infrastructure, right? We are facing

46:19

a future of aggressive

46:22

climate change. There are people who

46:24

literally think that we've got a

46:26

better chance going and terraforming

46:29

another planet than staying here, which

46:31

I have big issues with that

46:33

kind of rhetoric, but that's another

46:36

conversation. But the

46:39

same technologies or

46:42

more extreme versions of them, especially

46:44

if we talk about infrastructure change

46:46

that we are grappling with here,

46:49

would definitely have to be in the

46:51

conversation there. It's

46:54

amazing that I keep going

46:56

back to this idea in my head, and you

46:59

so beautifully point this out, that disability,

47:02

and maybe this

47:04

is just the problem with the

47:06

sort of American ideology,

47:11

is like it's not an individual issue.

47:13

No, no. So you're

47:15

touching on my favorite topic, which is disabled

47:17

people in space, so thank you for that

47:20

opening. But space

47:23

will surely disable us, right? Yeah, we will

47:25

all be like, I need technology to get

47:27

through this. I mean,

47:29

osteoporosis, all of the sort

47:31

of ways in which gravity

47:34

helps us reproduce and poop,

47:37

all of these things that are

47:39

going to become much more complicated, it just

47:43

points to how we could design

47:45

better, but also I think about

47:47

climate change as being one of these things that

47:49

disables people. We're going to

47:51

have more disabled people in the future,

47:53

not less, because of how we've set

47:56

things going forward, whether we get space

47:58

future, whether we get, you know, climate

48:00

change apocalypse future, we're looking at more

48:02

disabled people in our future, which is

48:04

why I think it's, you

48:06

know, way past time to start listening to

48:08

disabled people like in every area of planning.

48:12

Alice Wong calls us, Oracle's for the

48:14

future. Leah Laxmi Piapsna-Samarasina, you

48:16

know, says the future is

48:18

disabled. We have a

48:20

lot of, you know, poets and

48:23

writers and leaders within the disability

48:25

community who are saying really transformative

48:27

things about how we need to

48:29

organize ourselves for the future to come. And no

48:32

matter, like, you know, matter what

48:35

future that looks like, all of our

48:37

realistic futures are going to be disabled ones. Yeah,

48:40

yeah. And it's, you know, there's

48:43

just something about this mirror effect,

48:45

right? About kind of looking in

48:47

the mirror, stripping yourself down as

48:50

individuals and digging deep into your

48:52

own mentality and saying, you know,

48:54

I think just flexing, exercising your

48:56

empathy. You know, we

48:58

are talking about people. I am a

49:00

person. You are a person. We are

49:02

all people and we are intersectional people.

49:05

And, you know, there's this thing

49:07

that happens sometimes, and I think it's gross,

49:09

but I also commend these individuals. So I

49:11

struggle with this, but like, it's sort of

49:14

the Michael J. Fox effect,

49:16

which is kind of unfair for me to blame him

49:18

for it. But, you know, because

49:20

it happens all the time, but like, or

49:22

Bruce Willis, for example, Fronto Temporal

49:24

Dementia, like a famous person has

49:26

some sort of diagnosis and now there's like, they

49:29

dedicate their lives or their families dedicate their lives to like

49:31

raising awareness of that. Like I commend that. I think

49:33

that's really beautiful, but at the same time, like, why does

49:35

it only matter now? And

49:38

I think that it's a hard

49:40

thing for us, for any

49:43

of us, any intersectional person who

49:45

struggles with their own difficulties

49:48

to look in the mirror and say, like,

49:51

I have my shit. They have their shit.

49:53

Sometimes the shit is not the same shit. Sometimes other

49:56

people's shit is worse than my shit or my shit's

49:58

worse than other people's shit. But it's always... it

50:00

means to be human and why

50:02

do I need to have experienced something

50:04

myself before I'm willing to

50:06

just care about somebody

50:08

else's thing? No,

50:14

I mean, sometimes people talk

50:16

about non-disabled people, they use

50:19

the term temporarily able-bodied. Oh, I love

50:21

that. It's like maybe right now. Oh,

50:23

yeah. So,

50:26

yes, but I mean, I think what you're saying

50:28

is also we should care about it even if

50:30

it doesn't become us, even if we don't become

50:32

us. Yeah, exactly. And I really appreciate that. I

50:35

mean, I do like the

50:37

stick effects. If

50:39

you don't, you know, Anita Cameron has this

50:41

great quote. Anita

50:44

Cameron is this disability legend and

50:47

she's been arrested 140-something times with ADAPT

50:51

protesting for disabled people on

50:53

public transit and disabled people

50:55

getting medical care. She's

50:57

just amazing. And she has this great

51:00

quote and it is, you

51:02

erase us at your peril. Since

51:06

you like kind of dark things, I thought that would be a good

51:08

one for you. Yeah,

51:10

it's interesting because I think both

51:12

things can be true, right? Like

51:14

this idea that this could

51:17

be you, right? So, in a sense, like looking

51:19

in the mirror and saying, this could be me,

51:21

like I need to actually care about this because

51:23

it happens so often. Like you don't know, you

51:25

don't what you have until you've lost it or

51:27

you don't know how it is until it happens.

51:29

You're fine. But at the same time, it also

51:32

matters even if it never happens to you. Yes.

51:34

Like both of those things can be true. Absolutely.

51:37

Absolutely. No,

51:39

I love

51:42

thinking about the future, right? My training's in philosophy

51:44

of technology, right? I obviously want to think about

51:46

the future a lot and have for a long

51:48

time. And it's, I feel

51:50

like listening to disabled people reading memoir

51:52

and all of these things really helps

51:55

me think about the future in ways that no

51:58

other source of literature does. You

52:01

know, except, you know, I think

52:03

also about Afrofuturism and indigenous futurism in

52:05

this way, like these three sets of literature.

52:07

And of course, there's good overlaps, wonderful overlaps

52:10

between some of these things. You

52:12

know, really, like,

52:15

give us more realistic futures to

52:17

consider that aren't always thinking

52:19

that technology has somehow redeemed us

52:21

individually and then sort of as

52:24

a group of people as well. Absolutely.

52:28

There's just, you know, we're coming up

52:30

on the time that I've, on

52:33

having taken away enough time from

52:35

you, but there's obviously always so much more to

52:37

talk about. I'm curious, Ashley,

52:40

before I do want to ask you my

52:42

last two questions, because I ask, sometimes

52:44

I forget, but I just

52:46

feel like it's going to be important to hear from you. But

52:49

before I do, I'm curious, obviously, there's a million things

52:51

we didn't have a chance to talk about, but is

52:53

there anything that sticks out to you that you

52:56

feel like it would be kind of remiss

52:58

to not mention? Oh, no,

53:00

I think you're asking great questions, because a lot of

53:02

them aren't really ones I've been asked before. And I've

53:04

done it like a number of podcasts now. I'm

53:07

actually really excited about the conversation we're having.

53:10

It's not spreading over all the same stuff.

53:12

So I'm having a great time here. And

53:14

there's nothing like in particular that I feel

53:16

like a burning desire to talk about. I

53:19

feel like I should have said more about

53:21

eugenics at some point, but right,

53:23

we didn't even go there. I feel like it's,

53:25

it's weirdly sort of implied in a lot of

53:28

what we talked about. But you're right, we didn't

53:30

explicitly go there in the same way. But I

53:33

did appreciate that. And you do go there in

53:35

your book, like this is an important topic. Yes, yes,

53:37

yes. And so, you know, I

53:40

don't want to say on that note, because I don't want

53:42

to bias it or prime it. But I am really curious,

53:44

you know, my show covers

53:46

so many different topics, just scrolling

53:48

back to some of

53:50

the episodes that I did this

53:52

year, a fungal pandemic, investigative genetic

53:55

genealogy, gestures,

53:57

bluefin tuna, junk

53:59

science. women soldiers,

54:03

so many different than COVID pseudoscience. So

54:06

I love to get the

54:08

perspective of the experts, the

54:10

writers, the individuals that I talk to

54:13

about these two big picture questions and they have

54:15

to do with the future. And as a

54:17

futurist, I'm super curious about your

54:20

take. So here they are. When

54:22

you think about the future, in whatever context feels

54:24

relevant to you right now in this moment, so

54:26

this could be personal, it could be professional, it

54:29

could be familial,

54:31

communal, societal, global,

54:33

even cosmic. Number

54:35

one, what is the thing that's keeping you

54:37

up the most at night? Where are you really

54:41

struggling with pessimism,

54:43

maybe even cynicism? What's really

54:45

worrying you? And then on the flip side

54:47

of that, so that we do end up slightly more positive note,

54:50

where are you genuinely authentically

54:52

finding your optimism? Like what

54:54

are you truly looking forward to? Oh,

54:58

these are interesting questions. I have to

55:00

say, I probably have a weird sense

55:04

of the future. You

55:07

know, 10 years ago when I got my cancer diagnosis,

55:09

I thought I would be dead by now. And

55:13

I'm not super old yet. I

55:16

turned 40 this year. Me

55:18

too. Welcome to the club. Oh, congrats. Yes,

55:20

congrats to you too. Yeah, I love it. We

55:22

made it. Yay. And

55:24

my sense of my 40th birthday wasn't like,

55:26

oh no, I'm old now. It was just

55:28

like, oh wow. It's

55:31

like this is happening and I've had two recurrences

55:33

of my cancer, right? So this is not like-

55:35

What a prospective shift. Yeah. I've

55:37

had two little chunks of my lung removed. Shout out

55:40

to my surgeon. Love you, Betty. So

55:48

when I, like I don't, I guess I

55:50

don't stay awake at night. I think that's

55:52

a thing. I sleep really well and

55:54

it's not, and it's probably

55:57

because I take melatonin gummies. Love

56:00

that. I mean, like, they're

56:02

so delicious. I found a really good

56:04

brand and it's hard not to eat them

56:06

all day because it's so good. But

56:10

I've learned, you know, I've

56:12

learned some crib hacks about how to sleep, right?

56:15

So I'm not staying up at night.

56:17

It's not that I'm not racked with anxiety

56:19

all day every day. It's just night's not

56:21

the time for it. But

56:24

my anxieties, you

56:27

know, are more about, like,

56:30

how to,

56:32

you know, act locally in a lot

56:34

of these issues. Like, I live in

56:36

a pretty rural space, right? I live

56:38

in a college town that's surrounded, you

56:41

know, by pasture land.

56:44

And, you know, a lot of my current

56:46

efforts are about sort of, like,

56:48

regional work. I think there's a lot of

56:51

places that are sort of left out of

56:53

a lot of sort of the

56:55

latest thinking around disability, right? We have

56:57

some old systems in place.

56:59

We have some older thinking or

57:02

different thinking. Just, you

57:04

know, the sort of disability organizations

57:06

that exist in this space sometimes

57:08

are non-existent. Sometimes

57:10

we're hacking them together. Sometimes they used to

57:13

exist, but then people come and go in

57:15

the sort of longevity. You know,

57:17

I'm really sometimes jealous of people who live

57:19

in cities and can talk about public transit

57:21

in the ways that they do, right? When

57:25

I'm told our transportation system in my

57:27

small town is, like, the jewel

57:30

of our area in terms of

57:32

public transit and stuff, like, it's

57:34

great that we have it. But

57:36

I think about all of the people who are disabled

57:38

in our region who just don't have the same access

57:40

to anything. When we talk about sort of internet access,

57:42

when we talk about, like, access to

57:45

sort of public

57:48

infrastructure, access to other disabled people and

57:50

community. So a lot of what I'm

57:52

really interested in is building disability community,

57:54

where I am sometimes that's like telling

57:56

people they're disabled, which I know is like I'm

57:59

the disability I'm showing up and I'm telling

58:01

people. But there is

58:03

some of that where people get

58:06

their diagnosis and don't

58:08

necessarily have sort of a wider picture of

58:10

disability. So I think it's really important for

58:12

me to talk about disability history a lot

58:15

and for me to like invite other disabled

58:17

people into conversation. And not that I know

58:19

everything, like I know some things about the

58:22

history of disability, but I think there are,

58:24

I think it's really important to listen to other disability-related

58:28

themes like

58:30

I don't have all the disabilities. I mean, I'm working on

58:32

a list, but I don't have all of them. There

58:35

are things I can still learn. And it's

58:37

not even that having all of these disabilities means we have

58:39

the same experiences. So, and I

58:41

like being in groups of disabled people

58:43

where we're listening to each

58:46

other, learning from each other. You know, I

58:48

have a grant with some people on campus

58:50

here to bring in some disability justice,

58:53

education and arts programming. We're going to

58:55

have some like big names out in

58:57

the next few years. But then also

58:59

to have, to recruit within our

59:01

own community. And this is funding from

59:04

the Mellon Foundation, where

59:06

I can recruit disabled people from my

59:08

community to consult on

59:10

research and tech projects. So one of the

59:12

things that I think is really problematic is

59:15

that people often think about disabled people, even

59:18

if they're aiming technology at disabled people,

59:21

as human subjects. And I

59:23

really want us as high paid

59:25

consultants or as the researchers ourselves

59:28

rather than human subjects. Right. So I'm thinking

59:30

a lot about sort of how to set

59:32

that up in terms of bioethics. But

59:34

I'm also like getting to experiment a little bit

59:36

with what that might look like thanks to

59:39

this funding. And it's really wonderful to

59:41

be able to pay some

59:43

of our community members pretty well for

59:45

them to just come hear about a project

59:48

on campus or nearby and then provide their

59:50

feedback. And I insist on cross-disability groups, right?

59:54

We're not going to go in with all

59:57

the same disability type because we get much

59:59

more interesting conversations. and do a

1:00:01

lot more community building when we work across difference

1:00:03

too. So that's

1:00:05

what I'm working on, but I'm not

1:00:07

losing sleep. I'm just so grateful

1:00:09

and glad to be able to do some of

1:00:11

this work. Yeah, would you say that

1:00:14

that sort, that is your flip side of that question?

1:00:16

Like that is what you're looking forward to and

1:00:18

what you're really hopeful about? Yeah,

1:00:20

it is. I mean, there are like logistics

1:00:22

and anxieties around that. Like I gotta make

1:00:25

sure, you know, I have chemo brains so

1:00:27

like keeping things organized, you

1:00:30

know, bless my graduate research assistant

1:00:32

on this project, shout out to Lyndon, who

1:00:35

I will send random emails to and be like, hey, just put

1:00:37

this in a spreadsheet. I'm

1:00:40

going to forget all of it soon, you

1:00:42

know, these sorts of things. So also like

1:00:45

learning how to do some of the research

1:00:47

as a disabled person and setting up protocols

1:00:49

that other disabled people can engage in and

1:00:52

be researchers along these lines too. So

1:00:54

yeah, there's a lot of like threads to

1:00:56

that, but I

1:00:59

love being in disability community. I love

1:01:01

having conversations about technology and the future

1:01:03

and I get to do that. So

1:01:05

things are pretty amazing. Well,

1:01:08

gosh, I can't thank you enough for sharing your

1:01:10

story for A, for writing this book. Oh, thank

1:01:12

you. Because it's such an important piece of literature,

1:01:14

but also for sharing your story, for being here

1:01:16

with us for this hour, for answering like

1:01:19

just all of my weird questions and

1:01:22

sharing this time with us on the show.

1:01:24

I loved your weird questions. Thank you so

1:01:26

much for having me on and asking me

1:01:28

things that have gotten me thinking today and make me really

1:01:30

happy. Thank you. Oh, that makes

1:01:33

me happy too. Everybody, the

1:01:35

book is Against Techno-Ableism, Rethinking

1:01:37

Who Needs Improvement by Dr.

1:01:39

Ashley Hsu. And everybody

1:01:42

listening, thank you for coming back week

1:01:44

after week. I'm really looking forward to

1:01:46

the next time we all get together.

1:01:48

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else quite like it. Big

1:02:52

Sandy Superstore.