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1:33

Oh hey, it is last week's

1:35

conference lanyard. I'm at the bottom

1:37

of your luggage, Allie Ward. Here we are, it's

1:39

July in America and in other parts of the

1:42

world. Guess what? It's

1:44

Pride Month. It's Disability Pride Month. Did you know that? I

1:46

did, which is why we're doing this episode. This

1:48

episode, it's one that was recorded months back, but

1:50

I've kind of kept it tucked in my pocket

1:53

waiting to bust it out on this occasion. This

1:56

guest, simply wonderful, a professor of sociology

1:58

at the University of Colorado. in

30:00

a lot of problematic things,

30:02

right? Classism, racism, queerphobia, ableism,

30:04

all of these sort

30:06

of oppressive views. But

30:09

what we've seen throughout a lot

30:11

of history, but even right now, is

30:13

things like the way that people respond

30:15

to prenatal genetic testing and

30:17

what people choose to do in the

30:19

instance that that testing shows the

30:22

possibility of a disability for a

30:24

fetus. A lot of the

30:26

time, genetic counselors or people kind of

30:28

working in those fields, especially like the

30:31

fertility industry, there's a lot of push

30:34

to terminate pregnancies where there's a possibility

30:36

that the baby could be born with

30:38

a disability. And the tricky thing about

30:41

that is, you know, what

30:43

do we value more in this case?

30:45

Is it the parental autonomy or is

30:47

it avoiding what looks like a eugenics

30:49

practice? It's like a really

30:51

tough moral question because a lot

30:54

of people will go through that testing and they'll find out

30:56

that, say, their baby is going to

30:58

be born with Down Syndrome. There are

31:00

a lot of very real concerns that that family

31:02

or, you know, the pregnant person or a couple

31:04

might be dealing with in that instance, because

31:07

it is just our reality that there's not

31:09

a lot of support for disabled children or

31:11

their families. There are a lot of

31:13

reasons that that could be very, very difficult. And

31:16

some people in the disabled community will say,

31:18

well, you shouldn't have children, period, if you

31:20

couldn't handle having a disabled child. Some

31:23

people will say that we should not

31:25

do any prenatal genetic testing because people

31:27

knowing about the possibility of a disability

31:29

is problematic because if those

31:32

abortions occur, then that's a eugenics practice.

31:35

Other people will say, well, it doesn't matter

31:37

if it's eugenics because it's more important that

31:39

people have autonomy over their own lives

31:41

and reproduction and family. And so

31:44

it's a really complicated question. And I

31:46

was talking to systems biology

31:48

guest Dr. Emily Ackerman, and

31:51

a little bit about the

31:54

eugenics of gene editing and

31:56

CRISPR and things like that, and

31:58

the notion of curing. a disability

32:01

or preventing it. This

32:04

is like something that I try

32:07

to be vocal about whenever I can.

32:10

The pervasiveness of

32:13

eugenics in disease research

32:16

can be very tough to

32:18

be a disabled

32:21

researcher and human and be

32:24

exposed to. There's a lot

32:26

of assumptions that go into biological

32:28

work as far

32:31

as that people with diseases would not like to

32:33

be the way that they

32:35

are. And so it's tough to watch people

32:37

who do

32:39

disease research and

32:43

have probably not much

32:45

exposure to those people who

32:48

are affected. It's just

32:51

such a harmful mentality

32:53

to think that people would

32:55

be better off without their

32:59

genetic disorders.

33:01

And obviously, there are things about it

33:03

that are valid

33:06

to think about, like life threatening illnesses

33:08

and things like that. That's a conversation

33:10

that should be had by the

33:13

people with those disorders. It's

33:19

great. I love being disabled. And

33:24

I know that everyone does.

33:26

And I fully respect anyone's

33:28

right to say that they do or don't. But

33:31

too often, we don't hear the voices

33:34

of people who love being disabled. And

33:37

so what is the outlook on

33:39

that within disability communities of stop

33:43

trying to fix

33:45

us for your convenience or

33:47

comfort? Yeah, absolutely. So

33:49

that is a big issue. And

33:52

it's this perspective that looks at

33:54

disability as a pathology or that

33:56

the primary issue is there's something wrong

33:59

with the person. body or mind that

34:01

we need to use medical intervention to

34:03

fix or cure that person. That

34:06

perspective, when we kind of look

34:08

at identity or disability as not an

34:10

identity, but just like a medical diagnosis,

34:12

then we do come to this place

34:14

where we're diminishing a

34:16

person to just that so-called

34:19

pathology. And a lot

34:21

of people don't feel like their identity

34:23

or their experience or their body is

34:25

pathological. And so that

34:28

process of medicalization, of turning human

34:30

experiences into this issue

34:32

in need of fixing, can be

34:36

pretty dangerous for a lot of

34:38

reasons because we've seen that used

34:40

against people, especially like Black and

34:42

Indigenous and people of color. The

34:44

BIPOC community has been medicalized and

34:47

attributed to having disability throughout a

34:49

lot of American history and just

34:51

history in general. And

34:53

the queer community has had the same

34:55

thing happen to them as well, this

34:58

idea that especially like the trans community

35:00

or gender non-conforming folks have some kind

35:02

of like mental illness or psychological

35:05

pathology at play. And

35:08

those ideas, just like any idea

35:10

about disability, they're all social constructs. And we're

35:12

kind of creating these labels

35:14

and creating these understandings as a culture.

35:17

And a lot of people who

35:19

have what we would understand to be disabilities today

35:21

would say, I don't want to

35:23

be cured and I don't want to be fixed.

35:25

And a lot of people will kind of reject

35:28

that disabled label because they don't want to be

35:30

seen as something that needs to be cured or

35:32

fixed. It's really tricky

35:34

because if we only see disability as

35:36

this problem with the person

35:38

or this issue with the body or

35:40

the mind, then if the

35:43

only solution is to cure it, get rid

35:45

of it, erase it, prevent it, then there's

35:48

not a lot of room to have like

35:50

pride in one's identity or

35:52

to feel happy about being a

35:54

disabled person in the world when

35:56

the whole world kind of sees

35:59

you as this pathology or this.

36:01

problem. That's a really painful place to be

36:03

and it makes it really difficult for a lot

36:05

of people who acquire disabilities to kind of adjust

36:08

to that new life or

36:10

that new reality because we

36:13

only see these very negative ideas

36:15

over and over and over. And

36:17

how does that intersect with folks

36:19

who are struggling and

36:22

have a different viewpoint of it?

36:24

Like my mom has MS but

36:26

from a physical standpoint she is

36:29

very frustrated. So where

36:31

is the line there and how

36:33

do sociologists sort of approach people who are

36:36

saying this is my identity, I'm proud of

36:38

it, and others who are saying this is

36:41

really hindering me and I want

36:44

some sort of cure for this. For sure

36:46

and a lot of people will feel that

36:48

way. I know I felt that way for

36:50

sure myself. I deal with pretty severe chronic

36:52

pain and that's not something that I dealt

36:54

with until I acquired my disability in about

36:56

2018. And so that is very real.

37:01

Like the reality of experiencing

37:04

symptoms that gets in the way of you being able to do

37:06

those daily living tasks, that

37:08

is a really, really difficult transition that

37:10

is in a lot of cases

37:12

really traumatic. Like losing some freedom,

37:14

losing some independence. A

37:17

lot of people really, really, really struggle with

37:19

that and that's not a bad thing. Like

37:21

that's not something that we should just expect people

37:24

to just like suck it up and move on.

37:26

Like it is really difficult. Not

37:28

everybody has to have that disabled pride,

37:30

right? Not everyone has to be like

37:32

this is an identity that I'm really

37:35

happy about. Sometimes it can

37:37

just be, it just

37:39

is. It doesn't have to be a positive

37:42

thing for everyone. And in

37:44

the cases of those experiences

37:46

that are very difficult or people

37:48

who are living with symptoms that

37:50

are very like life altering or

37:53

activity hindering, we absolutely do

37:55

still want to be looking for cures and we want

37:57

to be looking for ways to make

37:59

life better. and easier and more fulfilling

38:01

for people who are in those situations. I

38:04

think the tricky thing is when groups like,

38:06

if we want to talk about like Autism

38:08

Speaks or you know groups that are kind

38:10

of considered like hate groups or eugenicists. Just

38:13

a side note, if you are not

38:15

hip to this info, yes. The organization

38:17

Autism Speaks is widely considered by the

38:20

autistic community to be trash for the

38:22

way that it seeks to just eliminate

38:24

the very things that make autistic people

38:26

who they are. Also, some

38:29

of the Autism Speaks officers were making

38:31

like well over half a million dollars

38:33

a year and they were

38:36

funding vaccines cause autism research long

38:38

after that one shitty study had

38:40

been debunked. But yes, the notion

38:42

of curing or eliminating people who

38:45

don't fit in, let's just say

38:47

it's chafing. The issue with

38:49

that perspective is it like takes it

38:52

all the way to like the you

38:54

know furthest end of that perspective of

38:56

like we need to get rid of

38:59

disability. We need to

39:01

eradicate autism, right? And

39:03

that perspective is very problematic. But

39:06

then if we take a couple steps down from there,

39:08

we do have a lot of people that are in

39:10

that place where they're like, well, I do really want

39:12

to cure. I don't want to experience this. I don't

39:14

want to feel this way. And

39:16

I think it can coexist when

39:18

people have disability pride and people

39:20

also want a cure or they

39:22

want things to be alleviated. It

39:25

can be a spectrum and you can change the

39:27

way you feel about your own situation or that

39:30

identity or that label like from

39:32

a day to day basis. And

39:34

that's also totally okay. Speaking of

39:36

labels, let's talk about emotional support

39:38

peacocks and the

39:40

abuse of vests that you can buy

39:43

off Etsy that make your dog an

39:45

emotional support animal. I feel like thankfully

39:49

this has been cracked down on

39:51

a little bit. But can we

39:53

talk a little bit about accommodations

39:55

that perhaps abled

39:57

folks take advantage of? Yeah,

40:00

so that is a big problem. Unfortunately,

40:02

it kind of adds fuel

40:05

to the fire of people thinking that

40:07

those with invisible disabilities might be faking

40:09

it or pretending that they have a

40:11

disability or that it's not a real

40:13

disability because a lot of people who

40:15

do have service animals or who do

40:17

use those kinds of resources and accommodations,

40:20

they are kind of lumped into that same

40:22

group of people who are doing it for

40:24

clout or for their own personal convenience or

40:27

for reasons like that. And

40:30

it is a big issue. So

40:32

a good thing for anybody to know if

40:34

they're working in retail or food

40:37

service or anywhere where you might encounter people

40:39

who are coming in with service animals, the

40:42

ADA does protect the use of service

40:44

animals and bringing them into spaces where

40:46

you can't bring pets. And

40:49

so you can always ask, is this a service

40:51

animal? And then you can ask what the animal

40:53

is trained to do. You can't

40:55

ask somebody for their diagnosis or anything like that.

40:58

There are some kind of clues that will

41:00

key you into whether an animal is actually

41:03

a service animal or not. If you're in

41:05

a work situation where you might have to

41:07

make those kinds of determinations, a

41:09

lot of the time you'll see those fake

41:12

vests or those fake placards or people trying

41:14

to park places that they shouldn't be in

41:16

accessible parking. And before you're like, Ali, stop

41:18

being a dick. Maybe that lady who got

41:20

banned from flying on United for trying to

41:23

bring a large emotional support peacock named Dexter

41:25

actually did need Dexter for support. Well

41:28

hang on and trust me. All right.

41:30

I looked into it and yes, she's

41:32

a performance artist who adopted the peacock

41:35

and kept it after her installation was

41:37

done. And at first she

41:39

just tried to straight up buy a seated

41:41

ticket for this large bird. But United was

41:43

like, we're not going to sell you a

41:46

ticket for that large bird. And

41:48

she was like, well, he is an

41:50

emotional support animal. So you must. And

41:52

I was like, sweetheart, don't give me that

41:54

horse shit. And later, yes, Dexter's owner did

41:57

say on record that he doesn't even usually

41:59

go on transport because she

42:01

doesn't want to traumatize him. So the

42:03

likelihood that Dexter, the emotional support peacock,

42:05

was actually emotionally supporting her and not

42:07

the other way around is pretty

42:10

dicey. Now other non-trained

42:12

emotional support service animals have

42:14

included a pig named Hobie

42:17

who screamed and took a

42:19

dump on the plane. Meanwhile

42:21

countless wheelchair users will tell you

42:24

that airline handlers are not well

42:26

trained on how to handle their

42:28

mobility devices. Check Twitter if you

42:30

don't believe me, check TikTok. Countless

42:33

times breaking really expensive chairs that

42:35

mean life or death to the

42:37

people who own them. So folks

42:40

let us not abuse accommodations that others have

42:42

spent their life fighting for just

42:44

so that you don't have to pay a pet

42:46

fee or you think you can skip a line.

42:48

And I really wish

42:50

people wouldn't do things like that but I

42:53

understand why people do you know they want

42:55

that convenience or they want to bring their

42:58

chihuahua with them to the grocery store and

43:00

I get it you know but I

43:03

would really encourage anyone who's considering

43:05

doing those kinds of things to not do

43:07

those kinds of things and

43:10

for the people who do have actual service

43:12

animals to just you know try

43:14

to tough it out and you know make

43:16

sure that you're self-advocating as much as you

43:18

can if you deal with those situations where

43:21

people might question if you do have a service

43:23

animal or not try to keep

43:26

in mind the way that those laws do protect

43:28

those animals or the use of those animals and

43:31

try not to give into that pressure

43:33

to share unless you want to things

43:35

like your your diagnosis details or anything

43:37

like that because there is a lot of

43:40

pressure there's a lot of hype especially

43:42

on social media about those instances where

43:44

people with genuine service animals

43:46

are dealing with discrimination and

43:49

not being taken seriously. She

43:51

says that there have been instances

43:53

of people faking their animals credentials

43:55

and then their untrained pet has

43:58

attacked a service dog. which

44:00

can have far reaching consequences for that

44:02

person's life. So. It's good to

44:04

be aware of what service animals really

44:06

are, what they're for and who, you know,

44:09

should or should not be kind of engaging in

44:12

those conversations or practices. Right, also

44:14

so expensive. Yes.

44:17

I mean, a service animal is like 20 grand. Yeah.

44:20

Like you're talking 20, 30 Gs.

44:22

Yeah, there's a lot of training.

44:24

Protective. Yeah, absolutely. And it's really

44:27

important that, you know, if there are animals who

44:29

are not service animals that we're not bringing them

44:31

into those spaces because of those kinds of issues.

44:34

You mentioned something about disclosing and asking. And

44:36

I know we have so many listeners who

44:38

are really curious and want to do the

44:40

right thing. And also who are

44:43

disabled, who want advice on this. When

44:45

someone asks you out of

44:48

warmth or genuine curiosity, or out of

44:50

aggression, you really kind of don't know

44:52

when someone asks you, what

44:54

happened to you? Why do you use that?

44:57

What is your invisible illness? Or

45:00

if you're asked that and you don't want to

45:02

disclose it, you don't want to talk about it,

45:05

you don't want to re-traumatize yourself if that's the

45:07

case, that disclosure and

45:10

that asking and being asked, what's

45:12

a sociologist's perspective on that? Yeah,

45:15

so that is a big topic. With

45:17

the first topic, they're kind of asking

45:20

strangers about their medical history.

45:22

Most people don't appreciate that.

45:24

So even if you're

45:26

burning with curiosity and you really, really want

45:29

to know if you see somebody with a

45:31

visible disability and you're just like, oh my

45:33

gosh, I'm so curious what their story is,

45:36

it's usually best not to ask. There's

45:39

not really any good reason that you need

45:41

to know why somebody uses a wheelchair or

45:43

a cane or a walker or anything like

45:45

that. If someone has

45:47

scars or facial differences or anything like

45:50

that too, if you're not

45:52

personally close with that person, you probably don't

45:54

need to ask. And

45:56

it's tricky. I know humans

45:58

were curious creatures. is right. And what if

46:00

someone asks and you don't want to tell

46:02

them? That is tough, right? That's kind

46:05

of a confrontational sort of interaction, which a

46:07

lot of people are not going to be

46:09

comfortable with, but you can be respectful

46:11

about it and just say, you know, Hey, I'm

46:13

not comfortable sharing my personal details with a stranger.

46:15

If you want to kind of educate

46:17

the person, you can say something like, Hey, it's really

46:20

not cool to ask a disabled person that kind of

46:22

question. You can also just make

46:24

up a story if you'd like. I know a

46:26

lot of people who do that. And especially if

46:28

you take it to like a really just absurd

46:30

level and, you know, make up

46:32

something that they absolutely know that you're

46:34

lying. Think about what they asked a

46:36

little bit. So make something up. Say

46:38

you were struck by lightning while riding

46:41

a hippo. Tell them it's your fifth life.

46:43

And these are battle scars from a fight

46:45

in Mesopotamia. Or some people

46:47

say that the best response to a

46:49

thoughtless intrusion is just to pause and

46:51

then volley back the question. Why

46:54

do you feel like you need to know? So trying

46:56

to kind of prepare those responses ahead

46:58

of time can be useful, especially,

47:01

you know, in workplace contexts where people will feel

47:03

like they do have some kind of right to

47:05

know. Your coworkers might think that

47:07

it is an issue that affects them or that

47:09

they have some kind of right to that information.

47:11

And it can

47:13

be challenging to deal with. It's something that

47:15

I deal with a lot actually in teaching,

47:17

because I'll self disclose that I'm disabled to

47:19

my students. And all the time they'll ask,

47:22

you know, well, what is wrong with you?

47:24

And I like when they ask that question, because then

47:26

I can kind of answer why we

47:29

shouldn't ask that question. Yeah.

47:31

What is wrong with you is

47:33

such a, I mean,

47:35

you should either ask that to every single

47:37

person you encounter or absolutely none of them.

47:42

Yeah, you don't ever ask, you know, non disabled

47:44

people that kind of question on a day to

47:46

day basis, right? If you see any old person

47:48

walking at the grocery store, you're not going to

47:50

go and be like, what's wrong with you? What

47:53

happened to you? You

47:55

can ask me that any day out of the year. And

47:57

I'd be like, okay, I got a list for you. And

52:00

I'm wondering if there's any current media that

52:02

you feel like does a

52:04

good job of that, that has writers

52:06

who come from a perspective of inclusion

52:09

and understanding and anything

52:11

that actually gets it right? I

52:14

mean, I've been looking for representation that gets it right

52:16

for a long time. There are

52:18

examples that are very close, but

52:22

then the caveat that we keep seeing

52:24

time and time again is that non-disabled

52:26

actors are playing disabled characters. And

52:29

that's kind of a tricky situation because

52:31

even if it's a

52:34

very complex and humanizing representation,

52:37

if the character being played is

52:39

not played by someone with that

52:41

actual disability, some people

52:43

within the field will say that that's kind of

52:45

like the disability version of blackface where that

52:49

non-disabled actor is trying to kind of make a

52:51

profit, make a

52:53

living off of exemplifying an experience that's not

52:55

their own. And so

52:57

we really push for hiring disabled

52:59

actors to portray those characters because

53:02

that's just going to get you

53:04

the best representation. And if

53:06

for some reason you can't do that, if you

53:08

can't hire someone who is say like, actually a

53:10

wheelchair user for that role, having

53:12

people on the writing team, people

53:15

involved in the creation of that

53:17

media who do have that experience

53:19

is really important. That's at David

53:21

Radcliffe on Twitter or David.Radcliffe on

53:24

Instagram. Emmy-nominated TV writer, managed by

53:26

Entertainment 360, Justine. There

53:28

is some really great, very entertaining,

53:31

very humanizing, very complex representation out

53:33

there. There's a movie

53:35

called Margarita with a Straw, which is about a

53:37

young woman, kind of like a

53:39

coming of age story, sort of exploring

53:42

her sexuality and queerness and college as

53:44

a person with terrible polity. I

53:47

said I have Margarita with a straw.

53:50

Look at this straw. There

53:53

are some other characters with disabilities in that

53:55

movie as well, but none of the actors

53:57

actually had those disabilities. So that's kind of...

1:00:00

violence against deaf people. And

1:00:02

this overlooked issue is really close to their

1:00:04

heart, they say. They'd also like a donation

1:00:06

to go to the Trevor Project, which focuses

1:00:08

on preventing suicide among LGBTQ plus youth. And

1:00:10

they say that the Trevor Project provides a

1:00:12

lot of mutual aid and mental health resources.

1:00:14

And those causes will be linked in the

1:00:16

show notes. So thank you to sponsors of

1:00:19

the show who make those donations possible. The

1:00:22

show is sponsored by BetterHelp. So is

1:00:24

my brain. Hey, are you messy? Aren't

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45 minutes before I'm out

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the door for a trip that I have not

1:03:19

yet packed for. You know what's going in my

1:03:21

luggage? One of my favorite new dresses from Quince.

1:03:23

I've treated myself, got myself a little navy summer

1:03:25

dress I'm very excited for. But if you need

1:03:28

some basics that are high quality and always stylish,

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dresses, they have blouses, they have shorts from $30,

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1:18:00

to be treated. And if

1:18:03

you're somebody with marginalized identities, whether it's

1:18:05

disability or any other marginalized identity, finding

1:18:07

people who are gonna be accepting is

1:18:09

really, really crucial. If you're

1:18:12

like, why isn't there a dating app

1:18:14

just full of people who get it?

1:18:16

And there is one, and it's called

1:18:18

Dateability, which as far as we could

1:18:20

find, it's the only dating app for

1:18:23

disabled and chronically ill communities. And it

1:18:25

was founded by a disabled woman to

1:18:27

create a safe space and an accepting

1:18:29

space to create good connections for people

1:18:32

with physical, intellectual, and psychiatric disabilities. And

1:18:34

I checked into the reviews of this

1:18:36

Dateability app, and a few folks said

1:18:38

that they wish more people were on

1:18:40

it and knew about it. So the

1:18:43

Dateability app is free. So feel free

1:18:45

to spread the word. Speaking of costs,

1:18:47

patron Conchetta Gibson shared, can we talk

1:18:49

about the additional social expenses and complications

1:18:51

that come with being disabled? The extra

1:18:54

time, appointments, phone calls, et cetera, and

1:18:56

Conchetta writes, I've been dealing with

1:18:59

chronic disease and brain fog my

1:19:01

whole life. And suddenly when quote,

1:19:03

healthy people experience it from long

1:19:05

COVID, it's now a national conversation

1:19:07

and a thing worth researching. I'm

1:19:09

glad it has attention, Conchetta writes, but

1:19:12

it's absolutely not a new phenomenon. So

1:19:14

yes, folks who have lived

1:19:16

with disabilities for years and years

1:19:18

have paid these longstanding prices socially,

1:19:21

financially, effort-wise, to navigate a

1:19:24

society that was not built

1:19:26

with them in mind. And

1:19:28

on that note, a

1:19:30

lot of folks asked about newly

1:19:32

acquired disabilities. Lena Brodsky, Max

1:19:34

Gutman B, and first time question asker

1:19:36

Lindsey Burke all asked about COVID. Max

1:19:39

asked, what have you seen about

1:19:41

how COVID is influencing the sphere

1:19:43

of disability sociology, both as a

1:19:46

mass disabling event and

1:19:48

an airborne illness that has

1:19:50

been downplayed by those in power, they ask.

1:19:53

Yeah, so COVID has been a really,

1:19:55

really interesting example of a lot of

1:19:57

the things that the field was already

1:20:00

looking at. And of course, we've seen

1:20:02

a lot of people acquire disabilities or

1:20:04

things like long COVID or post-viral illnesses.

1:20:08

And I would have loved to see

1:20:10

a lot more of those accommodations stick around, a

1:20:12

lot more support for the people going through that.

1:20:15

But unfortunately, we're not seeing too

1:20:18

much of that happening. We are seeing a lot of people

1:20:20

kind of getting back to business

1:20:22

as usual, which puts a lot of

1:20:24

people in a very difficult situation, especially

1:20:26

like our immunocompromised folks, like there are

1:20:28

a lot of people that are still

1:20:30

living in isolation. And that's just

1:20:32

kind of their reality right now, because the rest

1:20:34

of society is kind of, you

1:20:36

know, like, no more masks, no

1:20:39

more social distancing, people aren't really keeping

1:20:41

up with their boosters all the time.

1:20:43

And that creates a really difficult situation.

1:20:45

But yeah, we saw a lot of issues, especially at

1:20:48

the beginning of the pandemic, you know, as I started,

1:20:50

where very eugenicist attitudes of

1:20:52

like, oh, well, it's only like old and

1:20:54

sick people who are going to die. So

1:20:56

I'm not worried. And,

1:20:59

you know, just very problematic ideas

1:21:01

about, you know, okay, do we just not

1:21:03

value the lives of people who are older

1:21:05

adults or people with pre-existing conditions? Like are

1:21:08

they just collateral damage and

1:21:10

that's fine. And obviously,

1:21:12

that's, you know, really hard to deal with if you

1:21:14

are in that community. And you see society

1:21:16

at large kind of having this attitude of like,

1:21:18

well, those lives don't matter. And

1:21:21

what we did see also with

1:21:23

medical triaging practices in ICUs and

1:21:25

stuff, a lot of people with

1:21:27

visible disabilities were being kind of turned

1:21:30

away or shunned by those institutions, those

1:21:32

healthcare institutions, because their lives were

1:21:34

seen as less valuable. And so a

1:21:36

lot of the time people who were

1:21:39

prioritized in those triage situations are

1:21:41

going to be like younger individuals, people

1:21:43

without visible disabilities. And

1:21:45

so a lot of people, especially

1:21:47

like wheelchair users were really scared, you know,

1:21:49

at the beginning of COVID, people with chronic

1:21:52

illnesses and pre-existing conditions and older adults were

1:21:54

really scared of, you know, what does this

1:21:56

mean? What's going to happen? of

1:24:00

the ban say that it would

1:24:02

help law enforcement crack down on

1:24:04

pro-Palestine protesters who wear masks. For

1:24:07

more on Palestine and Gaza, you can

1:24:10

see our recent genocidology episode with the

1:24:12

world's leading expert on genocide, Dr. Dirk

1:24:14

Moses. But yes, roughly 5.3% of people

1:24:16

are estimated in the US to

1:24:21

have long COVID symptoms, which

1:24:23

occurs more often in people assigned female

1:24:25

of birth, people of color, folks over

1:24:27

65, or people

1:24:30

with underlying health conditions. Okay,

1:24:33

what is long COVID, right? The

1:24:35

CDC says the most common symptoms

1:24:37

of long COVID are fatigue, brain

1:24:39

fog, and something called post-exertional malaise.

1:24:42

But there are over 200 other

1:24:45

symptoms and associated conditions,

1:24:47

like myalgic encephalomyelitis or

1:24:49

chronic fatigue syndrome. And

1:24:51

that's abbreviated to ME

1:24:53

slash CFS, which can

1:24:55

be absolutely debilitating. And

1:24:58

if you're familiar with other psychomers,

1:25:00

physics girl whose name is Diana

1:25:02

Cowern, she contracted COVID right

1:25:04

after her honeymoon in the summer of 2022.

1:25:08

And she has scarcely left her bed

1:25:10

since if you've been following her story.

1:25:12

And actually coincidentally, or not coincidentally, because

1:25:14

it is Disability Pride Month, this Saturday,

1:25:16

July 6th, Diana is doing a live

1:25:18

stream. She probably will not be talking.

1:25:21

It's sort of a day in the

1:25:23

life of what her life with this

1:25:25

condition is like our friend Simone

1:25:28

Yehch and Vanessa Hill and Derek Muller

1:25:30

of Veritasium, as well as Diana's husband,

1:25:32

Kyle. And Ian Hecocks are raising awareness

1:25:34

and funds for long COVID research and

1:25:36

ME CFS. So you can look for

1:25:39

Diana's handles at The Physics Girl for

1:25:41

more on that type of disability, and

1:25:43

you can join the live stream. And

1:25:46

as someone who is immunocompromised myself, I do

1:25:48

hope that we all just try to mask

1:25:50

up and get vaccinations and try to keep

1:25:52

ourselves and others safer. Now, many

1:25:54

people wanted to know about allyship, but on

1:25:56

a more personal basis, Andrew Stone had a

1:25:59

question. how do you keep

1:26:01

a relationship healthy when you're a caregiver,

1:26:04

talking boundaries, not forgetting about oneself and the

1:26:06

things that you wanna do, but also being

1:26:08

available for them? If someone's found themselves in

1:26:10

a situation where they

1:26:12

are now disabled or

1:26:15

they have a partner, did any of your

1:26:17

work look at that aspect

1:26:20

in relationships? Yeah, and I

1:26:22

also, I have a little bit of personal experience with that

1:26:24

kind of thing as well. That

1:26:26

is a really challenging situation, especially

1:26:28

if it's like a transition or

1:26:30

a change that you go through with your

1:26:33

loved ones where you become a caregiver when

1:26:35

you previously were not one. It's

1:26:37

really important to prioritize your

1:26:39

self-care and to make sure that you're

1:26:42

still taking care of your own needs

1:26:44

and not sacrificing too much or taking

1:26:46

on too much in that situation, which

1:26:49

is obviously easier said than done, but

1:26:51

using as many resources as you can.

1:26:53

So you'll last longer and be better

1:26:55

at caregiving if you make sure to

1:26:57

get the sleep you need, the help

1:26:59

you need, and to do things for

1:27:01

your own mental health to prevent a

1:27:03

burnout. But what are those

1:27:06

resources to help out? Like there

1:27:08

are a lot of government resources, a lot

1:27:10

of mutual aid and community care resources that

1:27:12

people can make use of. And

1:27:15

it's kind of like the idea of how like every

1:27:17

therapist has a therapist and that therapist has a therapist,

1:27:19

like it goes up the chain. You

1:27:22

absolutely need to rely on other

1:27:24

people for social support

1:27:26

to step in and provide care

1:27:29

and resources to the person that you're doing caretaking

1:27:31

for and try not

1:27:33

to be everything for that other person

1:27:36

all the time. Obviously

1:27:38

there are a lot of reasons why it's

1:27:40

not always possible to have other support or

1:27:42

other people in that situation. And

1:27:44

so in that kind of situation, if

1:27:46

you're the sole caregiver for someone and you

1:27:48

don't really have any other health and you

1:27:50

don't really have access to that

1:27:53

mutual aid or community resources or government

1:27:55

resources, if you're kind of running

1:27:57

like a one person show, trying

1:27:59

to... take that time to do self-care

1:28:02

and take care of your own needs

1:28:05

and not neglect those needs is really

1:28:07

really important. Again, easier said

1:28:09

than done, but depending on what works for you,

1:28:11

you can do journaling to deal with

1:28:13

if you've got like difficult thoughts and feelings to work

1:28:15

through. Do some stretches, like move

1:28:18

your body if that's something that helps you feel

1:28:20

good. You can take a bubble bath, like read

1:28:22

a book that you like, watch a show, like

1:28:24

whatever it is that makes you feel like yourself

1:28:27

and take care of yourself. There's

1:28:29

only so much time in the day and so whatever you

1:28:31

can do to kind of band-aid,

1:28:33

deal with those individual instances of

1:28:35

hurt or stress or frustration and

1:28:37

then having those bigger moments to

1:28:39

decompress as well. Time block

1:28:41

like three hours on Saturday, I'm going to

1:28:43

do absolutely nothing or whatever it needs to

1:28:45

look like for you. And then

1:28:48

also having those conversations if you're able to

1:28:50

with the person that you're a caretaker for,

1:28:52

I think it's really good to be

1:28:54

open and say like, hey, you know, like I'm

1:28:56

really struggling right now with the amount of things

1:28:58

that are on my plate. Is there anything that

1:29:00

we could do to kind of compromise a little

1:29:02

bit here? Like, is there anything that maybe I

1:29:04

can take a break from doing for a little

1:29:06

while? And it'll depend on kind of what the

1:29:08

person's needs are. But if they're

1:29:10

able to kind of take care of some of

1:29:13

those daily living tasks themselves once in a while,

1:29:15

and you can kind of step in here and

1:29:17

there, perhaps that's a possibility. If it's

1:29:19

kind of round the clock, like complete

1:29:21

total care, then in that

1:29:23

case, I think it's really important to have other

1:29:25

people to step in as well. So you're

1:29:28

not doing absolutely everything for yourself and

1:29:31

another person. But even

1:29:33

in that case, again, like trying to prioritize

1:29:35

self care wherever you can, can make

1:29:38

a really big difference. But it is a tricky

1:29:40

situation to be in. And it's okay to just

1:29:42

acknowledge that sometimes too. And on

1:29:44

the topic of what to acknowledge,

1:29:46

Megan Lynch, our guest for the

1:29:49

caribology episode about not chocolate trees

1:29:51

wrote in, I think disability is

1:29:53

just a regular part of being

1:29:55

human. But because systemic oppressions create

1:29:57

a category and the other you

1:30:00

you identify by the category imposed

1:30:02

by the oppressor, even when you're

1:30:04

trying to dismantle the systemic oppression,

1:30:07

in this case, ableism. So,

1:30:09

Megan writes, we want to dismantle

1:30:11

ableism, and I'd like it if

1:30:13

disability were eventually just seen as

1:30:15

part of being human, like some

1:30:17

folks have brown hair, some don't.

1:30:19

Not othered, not punished, not stigmatized,

1:30:22

and Megan's episode on eating your local

1:30:24

street trees is amazing, we're gonna link

1:30:26

that to the show notes. We talk

1:30:28

about ableism and disability in that episode

1:30:30

as well. Now, in terms of identity,

1:30:32

Addie McBaddy asked, how do we work

1:30:34

through internalized ableism? And Addie writes, I

1:30:36

have chronic pain from hypermobility EDS, and

1:30:38

occasionally, it's bad enough that I need

1:30:40

a cane, but most days, I look

1:30:42

fine on the outside. So, I have

1:30:44

a hard time claiming I'm disabled. Kyle

1:30:46

Christensen wrote in and said, I live

1:30:48

with type one diabetes, I try to

1:30:50

live my life in a way that

1:30:52

makes people think I have no extra

1:30:54

limitations, which I obviously do have. In

1:30:57

our society, Kyle writes, should I get

1:30:59

over it and admit when I'm not

1:31:01

functioning at 100% or keep

1:31:03

pushing through it so no one

1:31:05

thinks I'm less capable than others?

1:31:07

And other folks, Alana Wood, first

1:31:09

time question asker, Katie D., Ashley

1:31:11

Oakey, Kelly B., Shara Harrison, Olivia

1:31:13

Parkinson, and Joe Ferrantino also asked

1:31:15

about owning a disabled identity when,

1:31:17

in Joe's case, their partial hearing

1:31:19

loss doesn't feel central to who

1:31:22

they are. B. Wilson and first

1:31:24

time question asker, Ellie Dreyes also

1:31:26

asked about living with chronic illness

1:31:28

and disabilities here in our society.

1:31:30

And any advice for disabled

1:31:33

people about making sure

1:31:35

their needs are met or dealing

1:31:38

with just the sort

1:31:40

of day-to-day crush of ableism or anything that

1:31:42

you wish you knew? Yeah,

1:31:47

I mean, again, the lived reality of being

1:31:49

a disabled person can be really, really tricky.

1:31:51

There are a lot of

1:31:53

challenges that non-disabled people

1:31:56

might not understand and that, especially

1:31:58

like a person who's just acquired. I

1:36:01

imagine ableism, ignorance,

1:36:03

funding, so many challenges. Yeah,

1:36:08

definitely just dealing with fighting

1:36:11

against those misconceptions and educating

1:36:14

people on the reality of disability.

1:36:16

There is a lot of

1:36:18

pushback on a lot of these topics.

1:36:20

There's such a huge diverse variety of

1:36:23

perspectives and experiences within the disability community.

1:36:25

So that can be challenging.

1:36:27

I think a lot of

1:36:29

the time when I'm teaching, people have so many misconceptions

1:36:31

that they come in with. So it can be kind

1:36:33

of an uphill battle to get to that point where

1:36:35

we're on the same page now. We're

1:36:38

not using words that are slurs anymore. We've

1:36:40

kind of gotten rid of some of those misconceptions that

1:36:43

we're getting a little bit more open-minded

1:36:45

about these topics. But interestingly, that same challenge

1:36:47

is the reason why I like this kind

1:36:49

of work. When we get

1:36:51

to that point where people kind of see

1:36:54

that it's not that way and that

1:36:56

they don't have to think about it

1:36:58

in this very black and white, disability

1:37:00

is bad, non-disability is good kind of

1:37:02

way, that is really

1:37:05

fulfilling. So it's challenging to

1:37:07

work through those conversations, but it's

1:37:09

also what I'm really passionate

1:37:11

about. So kind of a mix

1:37:13

for sure. Is that your favorite thing

1:37:15

about the work, that kind of

1:37:18

intrinsic fulfillment? I think it's

1:37:20

a big one. Another one

1:37:22

would also just be understanding myself better. That's

1:37:25

a big reason why I kind of went into the

1:37:27

field. And I think learning about all these things, it's

1:37:29

made it a lot easier for me

1:37:31

to advocate for myself and to

1:37:33

help other people in my life advocate for

1:37:36

themselves too. Being able to

1:37:38

support people and understand these experiences better

1:37:40

and understand myself better has made my

1:37:42

own life a lot better. And

1:37:45

so I think that ties in with being

1:37:47

a sociologist and doing work within the field,

1:37:49

but it always spills over

1:37:51

into every other part of life too.

1:37:53

Which is really cool, but it

1:37:56

also makes me really annoying. like

1:38:00

I can't watch movies or TV shows or

1:38:02

anything without just it's like always in the

1:38:04

back of your mind, so Yeah,

1:38:09

you're always thinking about it. It's it's wonderful

1:38:11

that you can highlight these things and have

1:38:14

other people look for them, you know? For sure. Yeah,

1:38:16

it's really it's everywhere. So once

1:38:18

you start seeing it, you really can't

1:38:20

stop seeing it. It's everywhere. And that's

1:38:23

true for everything in sociology. Sociologists were

1:38:25

some of the most annoying scientists for

1:38:27

sure, because like we're

1:38:29

living in society all the time. We're

1:38:31

studying society. And so it's

1:38:33

kind of like if you talk to a fish that's like a little

1:38:35

too aware of the water. So

1:38:39

it's definitely interesting, but that can be

1:38:42

like a challenge and kind

1:38:45

of a bonus all in one. Well,

1:38:47

thank you for educating me and us so

1:38:49

much. This has been great. Thank

1:38:51

you for answering some of the questions that are

1:38:55

hard to ask, but the

1:38:57

more we learn, the better, you know? Absolutely.

1:38:59

Yeah, I'm happy to be here. So

1:39:03

ask expert people earnest questions,

1:39:06

but not strangers, the intrusive ones. So

1:39:08

follow Gwen on social media at the

1:39:10

links in the show notes. Definitely check

1:39:12

out their lectures and slides on YouTube,

1:39:14

which will link right in the show

1:39:16

notes. There's so much more to cover

1:39:18

and consider this an intro to the

1:39:20

topic or kind of a free Costco

1:39:22

sample into their work, much more inventory

1:39:25

online. Their YouTube channel is awesome. You

1:39:27

can find us at Ologies on X

1:39:29

and Instagram. I'm Allie Ward on both.

1:39:31

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1:39:34

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1:39:58

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