Disability Sociology (DISABILITY PRIDE) with Guinevere Chambers 01:35:38

I know I usually save my secrets for the end of the episode, but I'm going to tell you my secret favorite candy. It's Reese's Peanut Butter Cup.

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Oh, hey, it is last week's conference lanyard. I'm at the bottom of your luggage, Allie Ward. Here we are. It's July in America and in other parts of the world. Guess what? It's Pride Month.

It's Disability Pride Month. Did you know that? I did, which is why we're doing this episode. This episode, it's one that was recorded months back, but I've kind of kept it tucked in my pocket waiting to bust it out on this occasion. This guest, Simply Wonderful, a professor of sociology at the University of Colorado, Colorado Springs, and they specialize in applied sociology and intersectional research in the areas of disability and gender and pop culture and social constructs and medicine.

in. They got a bachelor's in psychology and sociology, a master's in sociology, and they also conduct research and they do outreach. They are very smart. They are very cool. And this was a great talk. But before we get into it, a quick thanks to all the patrons who support the show for a dollar a month and submit your questions for Theologist via patreon.com slash ologies.

Thank you to everyone who's out there in Ologies merch from ologiesmerch.com. We got hats, totes. We have swimwear for your bod. Also, thanks to everyone who leaves us reviews. They help the show reach more people and I read them all.

Even the rare mean ones, like this week, we got a one-star review from Van Veltzer, who didn't like that I said the F word in the Puffin episode and said that I have a limited vocabulary in my little brain. But Van, sweet, delicate Van, that's exactly why we make Smologies episodes, which are kids safe and available in their own show feed. Smologies is its own show now. We just launched it. Find it wherever you get podcasts.

You can subscribe at the link in the show notes. It's free. Also, thank you to everyone else who left nice reviews, like Allison Eldridge, who wrote, every episode teaches me something new and in unexpectedly fun ways. Okay, thank you all so much for all your kind words. I read them all. And let's get into the celebration and exploration of an ology you may not have known existed. And I'd like to say, we covered a lot in this episode, but there's so much more to learn. It's not even funny. There are so many individual experiences

experiences, and disabilities. So in one episode, we can't touch on every facet. This is a really, really interesting and broad field. So instead, I approached this as an overview, and I tried to address as many questions from y'all as we could get to that could apply to folks in and not in the disability community. I really hope that it helps spread the word about Disability Pride Month and about ableism in general, and also

sparks some curiosity to go research more in terms of what interests you. So do enjoy as we chat about everything from the history of ableism to sign language to invisible illnesses, eyeglasses, research methodologies, getting it on with a disability, the criminal justice system, internalized ableism, the intricacies of caregiving, how to ask for what you need in anything in your life.

handling curious strangers, disclosing disabilities, how many of us are disabled, where ADHD and autism come into play, how to follow this study path, language, inclusion, finding community, and why July is Disability Pride Month with professor, researcher, activist, and disability sociologist, Guinevere Chambers. ♪

So my name is Guinevere or Gwen Chambers and my pronouns are they, them. Let's dive right in. How did you get into the sociology of disability? Did you have to design your own program? Are these programs that exist already? That's a great question. So I...

originally started in kind of the social psychology realm and then added sociology in as another interest kind of during undergrad. There are disability studies programs out there, but a lot of the time you're going to be looking at disability from like the lens of other fields. So I kind of got interested in it through personal experience. I became disabled or acquired my own disabilities when I was about

19, 20 years old. So kind of in the midst of undergrad and that sort of started to shift my perspective and add to my interest in that part of the field since I was kind of doing a lot of gender and sexuality stuff at that time. And I still do that too, but

I kind of wanted to dive deeper into that topic and was lucky to have faculty who kind of knew about the topic already so I could go down that avenue. So is that kind of rare to have that available? And does the disability sociology community tend to know each other because it's a rather small field? It is a pretty small field. That's why it's pretty hard to find like graduate school programs that focus on disability studies or disability sociology.

you're really just going to have to find a person who focuses on it and hope that you can work with them.

a lot of the time you're kind of going to be trailblazing a little bit on your own. And yeah, we do all kind of tend to know of each other. So it's a small world, but a wide range of specialties. And what would those niche interests be? Like, what are some of the flavors that one could study in this field? So depending on, you know, whether you're looking at sensory disabilities or intellectual and developmental disabilities, perhaps like mobility disabilities or chronic illness, chronic pain,

You can look at all these different kinds of identities and experiences. And some people will focus more on like those structural things, like how healthcare systems function. Some people will look more at that like interpersonal experience and relationships of disabled people to their loved ones or within the workplace. And really you can go kind of anywhere with it, which is really cool. It's kind of like a joke in sociology that if you can think of it, sociologists study it.

So when you get like kind of down that rabbit hole of disability or medical sociology, there's a lot of different branches you can go down.

My interests tend to focus kind of, again, on that gender and sexuality stuff in combination with disability. So looking at like queer identities of disabled folks and that intersection, particularly with sexuality and like interpersonal experiences with partners. And there's just not a ton of research on that yet.

And you published a paper on this specifically about disability status and getting it on. Yes. Correct? Yeah, very recently. Actually, earlier this year that came out and super pumped about it. That was a big study. It was actually my master's thesis. It was looking at a lot of different things, but how disabled people, you know, choose their partners, how they vet people to be sexual and or romantic partners, and

what the kind of daily lived experience looks like being a sexually active disabled person, the pros and cons and difficulties, challenges and benefits to having like a disabled sex life and just all the ins and outs of that topic. That's something that's really

really personal to me. It's really interesting to me. And for more on this, you can see their paper, Disabled Sexuality and Negotiations with Sexual Partners, which was published last year in the journal Sexuality and Disability, which one exists?

Amazing. And two, it names itself as a journal devoted to the psychological and medical aspects of sexuality in rehabilitation and community settings. But the paper opens, "...past research, media, and pop culture, and the medical field have largely overlooked the sexual lives and stories of disabled adults."

This research used a long response survey methodology to collect the stories of over 300 physically disabled adults regarding the interaction between their disability and sexuality and their experiences navigating sexual partnerships. And it went on to say data showed that there were a variety of challenges sexually active disabled adults faced, but numerous benefits were also described. But

But wait, back to that methodology. How is it collecting research for that? Because I feel like two things people often don't want to talk about are their disclosing medical conditions that they might find are stigmatized and also...

what's going on in the bedroom. So how did you find sample populations that are like, all right, I got info for you. Yeah, no. So absolutely. It's something that a lot of people struggle to talk about for either the disability reason or the sexuality reason or both.

So I did use like a survey methodology for that research. I got about 500 responses and I found people through like social media, Reddit, all kinds of different like online platforms and just distributed that survey as a LinkedIn survey.

And got people with all kinds of different experiences all over the world to talk about kind of what their sex lives were like and kind of bust some myths about disability and sexuality because there are a lot of them out there. It was really, really fascinating to go through. I still have all that data and I couldn't include everything in that paper, but there were so many interesting perspectives and people were really, really vulnerable, which was awesome to see, but

I don't know if I would have gotten that if I had interviewed people. I don't think I would have been able to interview 500 people. And I don't know if people would have been as open to sharing those like personal details and experiences if they were actually talking to somebody. And of course, there are like other kinds of barriers that you might deal with for a variety of reasons and trying to schedule those interviews and

And, you know, with like sensory disabilities and like hearing loss and stuff like that, it can be difficult to have that kind of interaction depending on the population. So survey methodology kind of gets you that far reaching, sometimes less in-depth approach. But in that case, I think it actually got me a little bit more detail and vulnerability, which was really cool.

Oh, it's so much easier to talk to a cursor than a person sometimes. Yeah, for sure. What about some of that flimflam? What do you think people do not know about

about that subject or things that you learned that gobsmacked you? I think the biggest thing that a lot of people believe, the biggest misconception would be that disabled people are either like not sexually active or not interested in sexual activity or that they shouldn't be engaging in those kinds of activities or having sexual relationships.

There's this really big stereotype that just, you know, desexualizes the disabled population, especially people who have like visible physical disabilities or people with like intellectual and developmental disabilities. There's a lot of like infantilization of that community.

And so all those stereotypes kind of coming together, what we really do see in reality is that people with disabilities are having, you know, awesome sex lives and they're engaging in all these kinds of relationships and experiences. And it's not like this taboo thing. It's not something that shouldn't be happening. It's something that is very much normal. I think related to that, there's a huge misconception that disability is like this thing that only affects like a very small group of people.

And it's actually about one in five people worldwide. So like 20% of people have some kind of disability. And according to the World Health Organization, in countries with life expectancies over 70 years, people spend on average eight years or 11.5% of their lifespan living with disabilities. And 80% of people with disabilities live in developing countries, according to the UN.

Numbers are going up as well, and medical advances increase lifespans, but there's newsflash in a global pandemic that's also contributing to those higher numbers. But more on that later. But yeah, the World Health Organization notes that people living with disabilities are the world's largest minority. It's tricky because when we have that many people in the community, but a lot of people have invisible disabilities, and a lot of people are just...

have such a variety of different identities, it's hard to have this clear idea of what the whole community looks like because it is so diverse. So there's a lot of misconceptions because that diversity is not really acknowledged. It's just like a very dehumanizing and kind of missing the details sort of perspective that I think a lot of people are going through the world with when it comes to their thoughts about disability.

Right. I think some people have this old stereotype that if you use a mobility device, then you have a disability. If not, you're fine. Right. Yeah. The only visible disabilities count or something. And yeah, so we can get into that as much as you'd like here. But there's a lot more to it than that. That's a big misconception. Well, one thing I want to talk about a little bit first is language, person first language.

old terms that have run their course and are not preferred or are even seen as a slur or insulting everything from differently able to special needs to some people still use the word handicapped. Like these are all words that are not looked on favorably. And

Where do you find that the education lies? Where are people getting their information to either whether they're in the community or not to being sensitive to that and also just being accurate? Yeah.

Yeah, so language is huge when we're talking about anything identity related, any marginalized community. And so coming back to what you mentioned about person first language, an example of that could just be saying like person with a disability or a person with autism. And on the flip side, we have our identity first language where we could say like disabled person or autistic person, for example.

There's a lot of debate about which of those is correct or right, but it kind of depends on who you talk to. A lot of people will use one or the other or will use them interchangeably. And my perspective is that it's really kind of

Whatever is personal preference for someone, you can always ask them what's okay as far as if they prefer that person first or identity first language. A lot of disability rights activists and people who feel that disability is really like central to their daily experience and their identity, they'll use that identity first language and they'll say like, I'm disabled instead of I have a disability. So yes, it's really a personal preference and respecting that once you know matters to people. But coming to those other terms,

Yeah, things like handicapped, special needs, differently abled, all of those terms. Some people do use them. Some people are okay with them. But a lot of people feel that they are kind of like euphemisms, like they're sort of filling in for the language of disabled as if disabled is a bad word.

And kind of trying to like skirt around the topic or act like it's this taboo thing that maybe we shouldn't talk about or we need to kind of use coded language because it's uncomfortable. And when we do that and we use that kind of euphemistic language, we're uncomfortable.

perpetuating this idea that disability is something that we should be afraid to talk about or that it's not something that you should take on as an identity, that it's something that needs to be kind of like spoken about in code words. And it can also be kind of infantilizing in a lot of cases as well, like saying that someone is

special needs. You know, they may have different needs than somebody who is not disabled, but you know, what's really special about that. And we do also hear things like the word special being used kind of in a derogatory way, like as a slur in some cases and,

One of the big things that the field is really passionate about is like getting that word disabled to not be seen as a bad word, to just be kind of like a matter of fact kind of term. It just is what it is. It's just part of the human condition. Disability is just disability. And so whatever somebody wants to use to describe themselves is totally fine. Like it's not

my place to say like you cannot call yourself differently abled if that's a term that's comfortable for you. But when talking about a community that you're not a part of, you are a non-disabled person talking about disabled people, you want to be careful about why you choose the language that you choose.

And really just think about, you know, is this the language that the person or community that I'm talking about would prefer? And if you don't have the opportunity to ask those individuals, you might want to think about, okay, why am I talking about this community? What is the goal of that conversation? And how do I want to frame disability in this conversation?

And perhaps avoiding that kind of euphemistic language and just using the term disabled could be a way to start to destigmatize the term a little bit. And remember, it's a huge and very diverse community. So even if you're a part of it, you may want to address a different community within it with respect.

The Americans with Disabilities Act has a language sheet that lays out a lot, including staying away from terms like wheelchair-bound or confined to a wheelchair, and rather simply say person who uses a wheelchair. Handicapped parking, it's a bit outdated. Accessible parking is more accurate.

And a person who's, say, had a stroke doesn't need your editorializing of suffering a stroke or being a victim of a stroke. Terms like blind or low vision and deaf or hard of hearing are widely preferred in advocacy circles over visually impaired or hearing impaired. Although you may find that it varies with individuals.

Again, respecting preferences is just the best way to not be a turd. I think that's really the best way to go is just to listen to disabled people about, you know, how they want to be spoken about, the issues that matter to the community, current events and stuff like that.

And I think it's really good to have like a diverse group of content creators that you're following as well, like not just people who are wheelchair users or just people who are deaf, but having like a good combination of that community to really get a bigger picture of what those issues look like. Yeah.

Reddit is also a really good place for community organizing and sometimes on like a more anonymous level, just supporting each other within a similar community. If you're saying like a chronic illness or chronic pain, subreddit kind of finding other people with similar experiences. And I found those kind of forums to be really, really useful places like as a disabled person, but also as a researcher, because people are sharing so much about what they're going through in those places.

It is tough to get people together, especially when a lot of disabled people are not able to organize in person, perhaps for transportation or financial or mobility reasons.

And so those online spaces are really, really crucial. I will say that in researching terminology of visually impaired, big air quotes there, in the subreddit called Blind, I happened upon a non-disabled person asking for advice on phrasing. And the consensus there was to quote one user, for me, you could use shit at seeing and I would chuckle.

but I'm sure not everyone is quite as live and let live on this issue as I am, they say. But I can be pretty certain that people who would get annoyed by something as well known as visually impaired are a very small minority. And then another person chimed in saying, overthinking this shit is how you end up with differently abled or handy capable. Again, others may very much disagree with those users.

But the point is, it can be really individual. And Guinevere makes the point that disability is such a social construct and that many folks wearing hearing aids might be considered to have a sensory disability, but all the time, every day, so many of us are out wearing glasses for correcting our vision, but it's not received the same way socially.

So evaluating stigmas and looking at how everything from gender diversity to socioeconomic status, minority status, and access is essential to the field of disability sociology. But when it comes to finding communities, they say that Reddit forums are very robust.

There's 60,000 people in the disability subreddit, 70,000 people in chronic illness. There's a group called Wheelchairs. 1.9 million folks are in the ADHD subreddit. There's nearly 10,000 in the amputee subreddit and another 372,000 on the autism subreddit.

But that might bring up more questions for you. And I'm wondering, too, that stat was really astounding. One in five of us are disabled. And I'm wondering, what is the scope? And we had so many people, patrons who wrote in, who wanted to know if they, let's say they have ADHD or partial hearing loss. Where is the line between identifying as disabled and asking for accommodations and

How is that decided? That is a tough question. So disability is a lot of different things, right? It can be like that medical legal definition where perhaps you can get like disability benefits through the government or social security, but there's also identity aspects to it. There's also social aspects to it. And it kind of is a messy category or a messy label.

But as far as who can identify as disabled, that's going to be on a really person-by-person basis.

Disability can be defined in a lot of different ways, but part of it can be that lived experience of facing challenges, whether they're related to mental health or bodily functioning or experiences of things like pain. All of that could really affect the way that you show up in the world, the kinds of things that you're able to do, those daily life skills, things like driving, things like reading. There's so many different things that all kinds of different disabilities could impact, and

And so if someone is having this experience where they feel like the way that they're able to go about daily life, you know, the experiences they have as far as completing tasks or they're experiencing a lot of physical symptoms that are kind of disrupting their day-to-day experience, that's definitely somebody who could say that they're disabled, regardless of whether they have like an official piece of paper medical kind of label from a doctor or some kind of specialist.

There's a lot of privilege wrapped up in being able to access those labels and access those diagnoses. And so I think a lot of people feel like self-diagnosis is not as valid, but that's definitely something that we kind of push against from the identity perspective of saying, no, you can absolutely take that label if you feel like that's your reality.

People could argue with you about it, but it's a really fluid identity category. And the experience of disability is also pretty fluid. It can be really kind of an individual decision, sort of what I'm getting at there. What about historically? How has...

The outlook on disability changed. And was there a moment in history, was the ADA a big moment in terms of advocacy and access? How far have we come? And is it even remotely enough? We have come far, but it is definitely not enough. There's a lot of work left to be done. Yeah, I figured.

A lot of people don't know about the disability rights movement, but it happened in the 1960s and 70s, kind of the same time as like the civil rights movement.

And there were a lot of, you know, like large scale sit-ins, a lot of really intense protest and activism work happening during that time. But then it took about another 30 years before the ADA, the Americans with Disabilities Act, was actually passed. One demonstration that sparked change took place in the 1990s when a group of disability rights activists fighting for accessibility laws. So they gathered at the foot of Washington, D.C.'s Capitol steps.

And they set aside their mobility aids to make what is now known as the Capital Crawl. This was an arduous, exhausting, and in many cases, impossible journey, scaling all 100 of the steps forward.

to the United States Capitol before cameras and lawmakers. And this demonstration also featured a then eight-year-old wheelchair user, Jennifer Keelan Chaffins. And this whole demonstration

was so visceral to watch and so impactful to people that it's been credited with really that final push to pass the Americans with Disabilities Act, which was passed on July 26, 1990, which further cemented July as Disability Pride Month and a time for exposure and education and continued advocacy. And the passing of the ADA.

prohibits discrimination based on disability and it mandates reasonable accommodations to employees and accessibility standards that must be met for public areas. And I was reading that leading up to the ADA, some activists

Calling out the lack of accessible public transportation were arrested, but the cops' patrol wagons were not accessible for their wheelchairs. So the police had to track down, with great frustration, accessible buses in which to toss disabled people advocating for accessible buses. So the ADA, July 1st.

worth celebrating? That didn't happen until 1990. And so there's been a lot of pushback from so many directions, but especially within government to actually recognize the disabled community as, you know, this identity community and this marginalized community that, you know, does deserve rights and access to opportunities and protections in a way that a lot of other oppressed groups do have access to through legislation.

We could talk about how, you know, the legislation, even from like the civil rights movement, how there's still so far to go for so many communities. But even, you know, leading up to the 1960s, there is a really, really dark history of the way that disability was seen and treated within like the Victorian era, like the late 1800s into early 1900s.

All over the U.S., there were these pieces of legislation that were kind of nicknamed the ugly laws. Pardon me. And essentially, they were legislation that disallowed anybody with visible, especially facial differences from participating in the public sphere.

And it's really horrible, right? And that on top of things like, you know, the institutionalization of people with mental health struggles into really, really abusive, unsanitary, crowded facilities like those, you know, so-called insane asylums and just, you know, outright torture practices being used against those communities and

So we've come pretty far from those kinds of things, but those things are not completely gone either. And that's the really tricky thing with disability activism right now is it's kind of in the background for a lot of people, but there are still some really big abuses happening, just really egregious things, you know, in that realm of literal eugenics that are still happening today and happening.

It's horrifying. It's really just disheartening to see those things happening, especially when they don't get very much attention. I hate to make you talk about them if you don't want to, but given a lot of people probably are ignorant of that, do you want to shed some light on that? For sure. Sure.

So kind of coming back to that eugenics topic and eugenics for anyone who's not familiar would be this kind of ideology or practice of kind of trying to shape what the population of people looks like in a society.

So trying to either increase the amount of people with so-called desirable traits or decrease the number of people with so-called undesirable traits, that perspective is really wrapped up in a lot of problematic things, right? Classism, racism, queer phobia, ableism, all of these sort of oppressive views.

But what we've seen throughout a lot of history, but even right now, is things like the way that people respond to prenatal genetic testing and what people choose to do in the instance that that testing shows, but the possibility of a disability for a fetus. A lot of the time, genetic counselors or people kind of working in those fields, especially like

the fertility industry, there's a lot of push to terminate pregnancies where there's a possibility that the baby could be born with a disability. And the tricky thing about that is, you know, what do we value more in this case? Is it the parental autonomy or is it avoiding what looks like a eugenics practice? It's like a really tough moral question because

A lot of people will go through that testing and they'll find out that, say, their baby is going to be born with Down syndrome. There are a lot of very real concerns that that family or the pregnant person or a couple might be dealing with in that instance, because it is just our reality that there's not a lot of support for disabled children or their families. There are a lot of reasons that that could be very, very difficult. And some people in the disabled community will say, well, you shouldn't have children, period, if you couldn't handle having a disabled child, right?

Some people will say that we should not do any prenatal genetic testing because people knowing about the possibility of a disability is problematic because if those abortions occur, then that's a eugenics practice. Other people will say, well, it doesn't matter if it's eugenics because it's more important that people have autonomy over their own lives and reproduction and family.

And so it's a really complicated question. And I was talking to systems biology guest, Dr. Emily Ackerman, and a little bit about the eugenics of gene editing and CRISPR and things like that. And the notion of curing a disability or preventing it. This is like something that I try to be vocal about whenever I can. The pervasiveness of genes.

Eugenics in disease research can be very tough to be a disabled researcher and human and be exposed to. There's a lot of assumptions that go into biological work as far as that people with diseases would not like to be the way that they are. And so it's tough to watch people who do disease research and have

probably not much exposure to those people who are affected. It's just such a harmful mentality to think that people would be better off without their genetic disorders. And obviously there are things about it that are valid to think about, like life-threatening illnesses and things like that. That's a conversation that should be had by the people with

those disorders. You know, there's, it's great. I love being disabled. And I know that everyone doesn't and I fully respect anyone's right to say that they do or don't. But too often we don't hear the voices of people who love being disabled.

And so what is the outlook on that within disability communities of stop trying to like fix us for your convenience or comfort? Yeah, absolutely. So that is a big issue. And it's this perspective that looks at disability as like a pathology or that the primary issue is like there's something wrong with the person's body or mind and we need to use medical intervention to fix or cure that person.

perspective, when we kind of look at identity or disability as not an identity, but just like a medical diagnosis, then we do come to this place where we're diminishing a person to just that so-called pathology. And a lot of people don't feel like their identity or their experience or their body is pathological. And so I'm

process of medicalization, of turning human experiences into this issue in need of fixing can be pretty dangerous for a lot of reasons because we've seen that used against people, especially like Black and Indigenous and people of color. The BIPOC community has been medicalized and attributed to having disability throughout a lot of American history and just history in general.

And the queer community has had the same thing happen to them as well. This idea that especially like the trans community or gender nonconforming folks have some kind of like mental illness or, you know, psychological pathology at play.

And those ideas, just like any idea about disability, they're all social constructs. And we're kind of creating these labels and creating these understandings as a culture. And a lot of people who have what we would understand to be disabilities today would say, I don't want to be cured and I don't want to be fixed. And a lot of people will kind of reject that disabled label because they don't want to be seen as something that needs to be cured or fixed.

It's really tricky because if we only see disability as this problem with the person or this issue with the body or the mind, then if the only solution is to cure it, get rid of it, erase it, prevent it, then there's not a lot of room to have pride in one's identity or to feel happy about being a disabled person in the world when the whole world kind of sees you as this pathology or this problem, right?

That's a really painful place to be, and it makes it really difficult for a lot of people who acquire disabilities to kind of adjust to that new life or that new reality, because we only see these very negative ideas over and over and over. And how does that intersect with folks who are struggling financially?

and have a different viewpoint of it. Like my mom has MS, but from a physical standpoint, she is very frustrated. So where is the line there? And how do sociologists sort of approach people who are saying, this is my identity, I'm proud of it, and others who are saying, this is really hindering me, and I want...

some sort of cure for this. For sure. And a lot of people will feel that way. I know I've felt that way for sure myself. I deal with pretty severe chronic pain and that's not something that I dealt with until I acquired my disability in about 2018. And so that is very real, right? Like the lived reality of experiencing symptoms that gets in the way of you being able to do those daily living tasks. That is a really, really difficult transition that is

in a lot of cases, really traumatic, right? Like losing some freedom, losing some independence. A lot of people really, really, really struggle with that. And that's not a bad thing, right? Like that's not something that we should just expect people to, you know, just like suck it up and move on. Like it is really difficult. Not everybody has to have that disabled pride, right? Not everyone has to be like, this is an identity that I'm really happy about.

Sometimes it can just be, you know, it just is. It doesn't have to be a positive thing for everyone. And in the cases of, you know, those experiences that are very difficult or people who are living with symptoms that are very like life altering or activity hindering, we absolutely do still want to be looking for cures and we want to be looking for ways to make life better and easier and more fulfilling for people who are in those situations.

I think the tricky thing is when groups like, if we want to talk about like Autism Speaks or, you know, groups that are kind of considered like hate groups or eugenicists. Just a side note, if you are not hip to this info, yes, the organization Autism Speaks is widely considered by the autistic community to be trash for the way that it

seeks to just eliminate the very things that make autistic people who they are. Also, some of the Autism Speaks officers were making like well over half a million dollars a year, and they were funding vaccines cause autism research long after that one shitty study had been debunked.

But yes, the notion of curing or eliminating people who don't fit in, let's just say it's chafing. The issue with that perspective is it like takes it all the way to like

the, you know, furthest end of that perspective of like, we need to get rid of disability. We need to eradicate autism. Right. And that perspective is very problematic. But then if we take a couple steps down from there, we do have a lot of people that are in that place where they're like, well, I do really want to cure. I don't want to experience this. I don't want to feel this way.

And I think it can coexist when people have disability pride and people also want a cure or they want things to be alleviated. It can be a spectrum and you can change the way you feel about your own situation or that identity or that label like from a day-to-day basis. And that's also totally okay. Speaking of labels, let's talk about emotional support peacocks and the

The abuse of vests that you can buy off Etsy that make your dog an emotional support animal. I feel like thankfully this has been cracked down on a little bit, but can we talk a little bit about accommodations that perhaps abled folks take advantage of?

Yeah, so that is a big problem. Unfortunately, it kind of adds fuel to the fire of people thinking that those with invisible disabilities might be faking it or pretending that they have a disability or that it's not a real disability. Because a lot of people who do have service animals or who do use those kinds of resources and accommodations, they are kind of lumped into that same group of people who are doing it for clout or for their own personal convenience or for reasons like that.

and it is a big issue. So a good thing for anybody to know if they're working in retail or food service or anywhere where you might encounter people who are coming in with service animals, the ADA does protect the use of service animals and bringing them into spaces where you can't bring pets. And so you can always ask, is this a service animal? And then you can ask what the animal is trained to do. You can't ask somebody for their diagnosis or anything like that, but

There are some kind of clues that will key you into whether an animal is actually a service animal or not. If you're in like a work situation where you might have to make those kinds of determinations. A lot of the time you'll see those, you know, fake vests or those fake placards or people trying to park places that they shouldn't be in like accessible parking. And before you're like, Allie, stop being a dick. Maybe that lady who got banned from flying on United for trying to bring a large emotional support peacock named Dexter...

actually did need Dexter for support. Well, hang on and trust me, all right? I looked into it and yes, she's a performance artist who adopted the peacock and kept it after her installation was done. And at first, she just tried to straight up buy a seated ticket for this large bird.

But United was like, we're not going to sell you a ticket for that large bird. And she was like, well, he is an emotional support animal, so you must. And United was like, sweetheart, don't give me that horse shit. And later, yes, Dexter's owner did say on record that he doesn't even usually go on public transport because she doesn't want to traumatize him. So the likelihood that Dexter, the emotional support peacock, was actually emotionally supporting her and not the other way around is...

pretty dicey. Now, other non-trained emotional support service animals have included a pig named Hobie who screamed and took a dump on the plane. Meanwhile, countless wheelchair users will tell you that airline handlers are not well-trained on how to handle their mobility devices. Check Twitter. If you

countless times breaking really expensive chairs that mean life or death to the people who own them. So folks, let us not abuse accommodations that others have spent their life fighting for just so that you don't have to pay a pet fee or you think you can skip a line. And...

I really wish people wouldn't do things like that, but I understand why people do. They want that convenience or they want to bring their chihuahua with them to the grocery store. And I get it, but I would really encourage anyone who's considering doing those kinds of things to not do those kinds of things. And for the people who do have actual service animals to just...

Try to tough it out and, you know, make sure that you're self-advocating as much as you can if you deal with those situations where people might question if you do have a service animal or not.

Try to keep in mind the way that those laws do protect those animals or the use of those animals and try not to give into that pressure to share unless you want to. Things like your diagnosis details or anything like that. Because there is a lot of pressure. There's a lot of hype, especially on social media, about those instances where people with genuine service animals are dealing with discrimination and not being taken seriously.

There have been instances of people faking their animal's credentials and then their untrained pet has attacked a service dog, which can have far-reaching consequences for that person's life. So... It's good to be aware of what service animals really are, what they're for, and who, you know, should or should not be kind of engaging in those conversations or practices. Right. Also, so expensive. Yes. I mean, a service animal is like...

20 grand. Yeah. Like you're talking 20, 30 Gs. Yeah. There's a lot of training. Yeah, absolutely. And it's really important that, you know, if there are animals who are not service animals, that we're not bringing them into those spaces because of those kinds of issues. You mentioned something about disclosing and asking, and I know we have so many listeners who are really curious and want to do the right thing. And also who are disabled, who want advice on this.

When someone asks you out of warmth or genuine curiosity or out of aggression, you really kind of don't know when someone asks you, what happened to you? Why do you use that? What is your invisible illness? Or if you're asked that and you don't want to disclose it, you don't want to talk about it, you don't want to re-traumatize yourself if that's the case, that disclosure and that asking and being asked, what's a sociologist's perspective on that?

Yeah, so that is a big topic. With the first topic there, kind of asking strangers about their medical history. Most people don't appreciate that. So even if you're burning with curiosity and you really, really want to know if you see somebody with a visible disability and you're just like, oh my gosh, I'm so curious what their story is.

it's usually best not to ask. There's not really any good reason that you need to know why somebody uses a wheelchair or a cane or a walker or anything like that. If someone has scars or facial differences or anything like that too, if you're not personally close with that person, you probably don't need to ask.

And it's tricky. You know, I know humans, we're curious creatures, right? And what if someone asks and you don't want to tell them? That is tough, right? That's kind of a confrontational sort of interaction, which a lot of people are not going to be comfortable with. But you can be respectful about it and just say, you know, hey, I'm not comfortable sharing my personal details with a stranger. If you want to kind of educate the person, you can say something like, hey, it's really not cool to ask a disabled person that kind of question.

You can also just make up a story if you'd like. I know a lot of people who do that. And especially if you take it to like a really just absurd level and, you know, make up something that they absolutely know that you're lying. Yeah.

make them think about what they asked a little bit. So make something up. Say you were struck by lightning while riding a hippo. Tell them it's your fifth life and these are battle scars from a fight in Mesopotamia. Or some people say that the best response to a thoughtless intrusion is just to pause and then volley back the question, why do you feel like you need to know? So trying to kind of prepare those responses ahead of time can be useful.

especially, you know, in workplace contexts where people will feel like they do have some kind of right to know. Your co-workers might think that it is an issue that affects them or that they have some kind of right to that information. And it can be challenging to deal with. It's something that I deal with a lot actually in teaching because I'll self-disclose that I'm disabled to my students and all the time they'll ask, you know, well, what is wrong with you?

And I like when they ask that question because then I can kind of answer why we shouldn't ask that question. Yeah. What is wrong with you is such a...

I mean, you should either ask that to every single person you encounter or absolutely none of them. And yeah, you don't ever ask, you know, non-disabled people that kind of question on a day-to-day basis, right? If you see any old person walking at the grocery store, you're not going to go to them and be like, what's wrong with you? What happened to you? You could ask me that any day out of the year and I'd be like, well,

Okay, I got a list for you. I mean, we all do, right? We all have our list of all the things that are wrong with us. But that's the interesting, you know,

issue with that question is that when we're only directing it towards visibly disabled people most of the time, that's really just kind of rooted in ableism or rooted in this like objectification of disabled people, which we see a lot in the medical field, right? Turning people into like these medical marvels or these spectacles to be, you know, photographed and poked and prodded. And

That's a really traumatizing position to be in. Definitely, I would recommend avoiding asking people that question. They'll share with you if they want to. And if you're the one being asked that question, being prepared to shut it down and say that you're not comfortable answering or give them some kind of silly answer to kind of get them off your back as well. I love a silly answer that you can, if you wanted, you could have several of those and just depending on the day. Yeah.

But make sure it's a real fuck you, though. A real amusing fuck you. There should be an app for that where you can just generate different responses. Or at least a Reddit sub-thread of your best responses. I have a friend who's great, David Radcliffe. He's the disability chair for the Writers Guild of America West. And he is collecting just a list of things people say to him that are absolutely bananas. Yes.

He uses a wheelchair, but, you know, things where people will pray for him and try to push him in his chair when he does not want that. He tends to advocate for the thought that everyone is temporarily abled. And at some point in your life, especially if you live long enough, you'll experience disability. A really common, I guess, motif that we see in the field is this concept of the anyone, anywhere, anytime threat concept.

I don't like calling it a threat because that sounds very negative, but it's essentially the idea that any person at any time in any place can become disabled. Like obviously you can be born with disabilities, but you can acquire them through injuries or illnesses or accidents and things like that. But it can also just happen because of aging and the passage of time. And so, yeah,

We kind of have this fear as a society that, you know, we think becoming disabled is this like really tragic, horrible outcome that we want to avoid at all costs.

And a lot of people who are disabled in the moment right now would say, no, that's not really the whole story. Again, becoming disabled and acquiring a disability can be a traumatic and very difficult experience. So not to diminish that, but this idea that a disabled life is a negative thing is kind of this fear that's held over us. And so if you're not disabled, thinking of yourself as temporarily abled is a way to bridge that distance of, well, this doesn't apply to me.

But an additional mindset change can be to move away from catastrophizing disability. And David, as a co-chair of that Disabled Writers Committee for the Writers Guild, works with that team to change the lens that's applied to disability in entertainment. For that reason, too, when we see media representation of disability, if you think about, you

you know, the characters you've seen in movies and TV shows with disabilities, how many of them are villains? A lot of them, right? Especially burn injuries, facial differences, amputations, things like that. A lot of that representation where disabled characters are the bad and evil and one dimensional characters, right?

And we don't see a lot of the flip side where disabled characters are the heroes or people who have like a good life or good relationships. It doesn't mean it's the end of the world, right? It's not a death sentence. It's something that people do adjust to and you can still have a kick-ass life regardless of what your disability looks like. You mentioned representations too. And I'm wondering if there's any current media that you feel like

does a good job of that, that has writers who come from a perspective of inclusion and understanding and anything that actually gets it right? I mean, I've been looking for representation that gets it right for a long time. There are examples that are very close, but then the caveat that we keep seeing time and time again is that non-disabled actors are playing disabled characters. And that's kind of a tricky situation because even if

It's a very complex and humanizing representation if the character being played is not played by someone with that actual disability.

Some people within the field will say that that's kind of like the disability version of blackface where that non-disabled actor is trying to, you know, kind of make a profit, make a living off of exemplifying an experience that's not their own. And so we really push for, you know, hiring disabled actors to portray those characters because that's just going to get you the best representation. And if for some reason you can't do that, if you can't hire someone who is say like actually a wheelchair user for that role, then,

Having people on the writing team, people involved in the creation of that media who do have that experience is really important. That's at David Radcliffe on Twitter or David.Radcliffe on Instagram. Emmy nominated TV writer managed by Entertainment 360. Just saying. There is some, you know, really great, like very entertaining, very humanizing, very complex representation out there.

Like there's a movie called Margarita with a Straw, which is about like a young woman kind of, it's like a coming of age story, sort of exploring her like sexuality and queerness and college as a person with cerebral palsy. Margarita with a Straw

There are some other characters with disabilities in that movie as well, but none of the actors actually had those disabilities. So that's kind of a little downside there. We also have movies like The Theory of Everything. Obviously, Stephen Hawking is like a really big name as far as pop culture and media, as well as in the disability community. So we have these interesting and entertaining and humanizing representations out there, but

What I tend to gravitate towards even more than those potentially kind of inspiration porn sorts of stories, we have something called incidental representation.

which is my personal favorite kind. It's where disabled characters or storylines are kind of just there. And it's not really meant to be like a plot point or this inspirational thing. It's just like, it just is. And a really good example of that is, I don't know if you've seen the movie Luca, but it's fairly recent. It's a kid's movie that is about like these young boys who are like mermaids or mer people. There's a character whose dad is missing one of his arms and,

And at one point in the movie, one of the boys asks him, you know, what happened to you? And he's just like, the sea monster aided. What? No, this is how I came into the world.

Oh, a mermaid bit it, you know? And then later he's like, oh no, I'm just kidding. Like I was just born this way. And that's the only time in the entire movie it comes up. Like he makes a little joke about it because he's talking to kids and then he's like, no, I was just born this way. And then they just move on. And it wasn't like this, you know, big plot point, this big dramatic moment. It was kind of just, you know, a disabled person being included in that story. And so that kind of representation is really awesome, but it's also like,

Not super common. A lot of the time disability is used as a plot device. Yeah. I understand why writers do that, but it can create some issues. So another one of those big tropes in representation, we have this kind of trope of a super crip. Yeah.

That, hmm, that does not sound good. Probably. That's yeah, what we've kind of termed that type of representation. I'm not a fan of the name. I would not recommend that people really go around repeating it either. But it's essentially the idea of like when a disabled character has like superpowers, there's kind of a trend with blind characters of this kind of

second sight sort of power where a lot of like superheroes will have like, you know, super senses in some place other than where they have their sensory disability. And,

So if they're a blind character, they have like supersonic hearing or they're like really amazing at fighting or they've got, you know, like this earth tremor sense or things like that. And we see just time and time again, these examples of people who are, you know, they can't just be people. They have to be way better than a typical person and have these just superhuman abilities because they have a disability. And it's really interesting. It could be for some people kind of,

fun, entertaining representation. Obviously, if you are growing up as a blind child and you see representations of Daredevil or Toph in Avatar, that could be positive for a lot of reasons. But again, it doesn't really paint a real picture of what disability is like in real life.

Right. It's like if you're disabled, you better have something cool to make up for. Right. You're like, fuck you, man. Yeah. Yeah. And we'll see like, you know, representation of like savants, people with autism who are just like incredibly intelligent. Like there's that show, The Good Doctor. I mean, Rain Man, anyone? Yeah, exactly. Take him to the casino. You got an ace in your pocket right here. Like, how can you use him to make money? You're like, geez.

Jeez Louise, you know. Yeah. So we see a lot of that. And then again, like using disability as a plot device that can work in that space, you know, as like the super crip trope, but it can also work with the disabled villains trope where we'll see characters like Two-Face in Batman, you know, Harvey Dent is like this character

in character, two-faced person, right? He's like a lawyer who's really kind of shady with the things that he does. And so he's punished with a disability that makes him literally two-faced. Like he's burned on half of his face and he becomes...

through that experience that disables him, he becomes a literal villain. And so, you know, it's really on the nose there. They're like, you know, we're going to call him Two-Face. He's got these two different sides to his face. He's got this character trait where he is Two-Faced. And we see a lot of examples of, you know, like Darth Vader is another good example there of disability as a punishment for being a bad person. And, yeah.

That was how a lot of humans thought about this. A lot of societies thought about disability for so long was if a baby was born with a disability, it was because of something horrible that, you know, their parents had done or that they were being punished for. A lot of the time it was like ideas like sin. This would come back to like religious sort of beliefs.

that disability was a punishment and it was something that you did wrong or something bad about you or it's your bad character as this visible mark of stigma.

And obviously that's really unfair. That's really untrue. But that same stigma kind of still persists today. And our media really doesn't help too much in issuing those kinds of ideas. We're making it worse. Can I ask you questions from listeners? For sure. We have so many good questions.

So many good ones that I sang to you, which is rare, and you're welcome. I'm sorry. But before we get into your questions, we'll toss a little cash to a cause. And this week, Guinevere asked to split it between HERD, which stands for Helping Educate to Advance the Rights of the Deaf, which is an organization that fights ableism and racism, particularly within the criminal justice system. Some of Guinevere's research focuses on police violence against deaf people, and this overlooked issue is really close to their heart, they say.

They'd also like a donation to go to the Trevor Project, which focuses on preventing suicide among LGBTQ plus youth. And they say that the Trevor Project provides a lot of mutual aid and mental health resources. And those causes will be linked in the show notes. So thank you to sponsors of the show who make those donations possible. When U.S. Bank says they're in it with you.

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because together they're proving day in and day out that there is nothing as powerful as the power of us. Visit usbank.com to get started today. Equal housing lender, member FDIC, copyright 2024, US Bank. This show is sponsored by BetterHelp. And as I record this, my dog, Gremmy, is snoring.

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This episode is brought to you by Merrick Pet Care. And y'all know I have a little dog named Gremmy, which is short for Gremlin. And y'all helped me name her. And there's nothing that we like more than seeing her happy, which means tasty dog foods. And Merrick has been crafting high quality dog food for over 30 years. They were founded in Hereford, Texas.

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Okay, so think about your childhood and think about some highlights. I bet they were probably out essentially tinkering. This is why I love KiwiCo. Each month, they send a kid a crate. It's packed with these engaging hands-on activities. They introduce them to science and technology and art concepts.

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such a good gift for them because it can cultivate their natural curiosity all while doing things like discovering the science of magic or engineering a domino machine and more this is why I get KiwiCo for friends kids for nieces for nephews I love that there's a ton of different types of crates to choose from and then I love when I get like pictures and videos of the kids who are like playing with them they're always having such a good time so help kids make mems redefine learning with

They're going to dig it. Trust me.

So Amy Martin asked, please, please, please discuss invisible disabilities. Linda Geffen said disability and invisible injuries is an important topic in general for me. Scarlett P asked, do you have any advice for people with invisible disabilities who struggle with imposter syndrome or gaslighting? And other patrons, including Crystal Mendoza, Emily B. Wilson, Linda Brodsky, Matt Sicato, Amelia Phillips, and Sir Shakes-A-Lot asked about advice for those who have them or from people who want to be better allies to those who have invisible disabilities.

What is invisible illness and how do those with it navigate in a way that they get accommodations again without having to disclose or having people question them?

Yeah, so that is one of those really interesting things that kind of visible versus invisible. So for people with visible disabilities, there is usually a lot more experiences of like ableism from strangers because people have all kinds of thoughts and questions when they can see your disability. And they might obviously be like, oh, that person might need or want accommodations because they can just see it right then and there.

But for people with invisible disabilities, getting accommodations can kind of necessitate this process of like coming out as disabled and can be up to the individual how much they want to disclose, depending on the context. If it's like a workplace situation, you don't necessarily have to talk to HR about all the details of your experience.

But some places they might want doctor's notes, even just in, you know, day-to-day life with like friends and family. If there's something that would make things easier for you, you might have to share a little bit about, you know, what you need or why. And hopefully people will be accepting and open to that. But invisible disabilities are kind of a whole thing.

unique beast of their own because when people can't see what's going on, they might have assumptions that there is nothing going on or that it's something that you're making up. There's a lot of gaslighting that people with invisible disabilities might go through, even in medical contexts, like medical gaslighting on the part of doctors. There

there's gendered and race elements to that as well. I know, especially like in the dating sphere, coming out as disabled over and over and over to potential partners is something that a lot of people struggle with because it's again, kind of taboo. It's something that if people can't see it, they don't always believe it. And so it's tricky to navigate, but kind of

Thinking to yourself and figuring out for yourself, you know, what you're comfortable sharing and what you're comfortable asking for, what you might need. Having those questions answered for yourself can make those conversations easier. So if you anticipate tough conversations or questions, it may help to ask yourself what you need in advance so you can better answer the question if it comes up. Like having a little plan so you just don't sit there thinking like, uh...

And then once you're home, you have a bunch of examples that you didn't think of in the moment, which happens to me constantly. Are there any examples of invisible illness that people should be aware of if they're unfamiliar with what that means? Yeah. So basically that could be any kind of like illness, pain or disability that's not immediately apparent like upon looking at somebody. This could be like mental health for one, like all kinds of different mental disorders and

I don't always love the language mental disorder because I think, again, the social construction of these categories and these labels can be kind of messy and tricky and problematic. But if someone's dealing with, say, you know, depression, anxiety, ADHD, bipolar, schizophrenia, like any of these kind of mental health diagnoses.

Things like chronic pain or chronic illness, like if someone has, say, chronic back pain, you might not be able to tell just by looking at them. If somebody is dealing with maybe chronic migraines, that could also be chronic pain, and that would also be what we would call a dynamic disability. These are things that will look different from one day to another.

And that can be tricky, too, because sometimes people will think, well, I, one, can't see your disability and two, sometimes you look fine. And so is it really there? And so those dynamic disabilities, those ones that really fluctuate that are also invisible can kind of be their own sort of experience in category two. But across the board, to really simplify it, if it's not visible right when you look at that person, we could consider it an invisible disability too.

So we have some episodes that have addressed these before, like the fearology episode about stress and anxiety, the traumatology episode about PTSD. We have an episode on addictionology. Dolorology is about pain. And then, of course, the attention deficit neuropsychology three-part episode about ADHD.

in the case of this next question asked by Lil MC, Char Harrison, Olivia Parkinson, Alana Wood, Ava, Nar, Alyssa Simmons, first-time question asker, Lindsay Burke, Teddy Egelhoff, and Emily. We had a lot of folks ask about their ADHD and whether or not that includes them in the disability community.

to what extent accommodations are, you know, to be expected, things like that. So I think a lot of folks are curious about that. Like, am I in or am I...

a charlatan. Yeah. I mean, I think a lot of people see it as like the secret club that you have to be like disabled enough to get in. And again, like it can be just that self-chosen identity. If you feel like your ADHD or whatever it is that you're dealing with affects your day-to-day life or your relationships or your experiences of the world and of your body and of your mind.

If you feel like you're experiencing challenges or barriers or this fluctuating nature of my needs are higher on some days and lower on others, or if accommodations would benefit you, then you can absolutely take that label. You can absolutely say that you're disabled. You also don't have to. A lot of people who have various mental health diagnoses, or this is a big thing within the deaf community, a lot of people will say, no, I'm not disabled.

And again, that's totally up to the individual person. But you can get accommodations for ADHD as well as a lot of other diagnoses, whether that's in the workplace or at school or wherever you might be.

There are a lot of things that can help people with ADHD. Things like having clear directions written down instead of just verbal directions can make a big difference. Having flexible deadlines sometimes can be really useful for people. Extended periods of time to work on something, perhaps. This is really broad because I'm trying to talk in general, like workplace, school, everywhere. Yeah.

But, you know, in relationships to like people being patient and comfortable and flexible with communication, not always being perhaps consistent, you know, just give some grace to their friends and loved ones with ADHD and say like, hey, not a big deal that you didn't text me back for a couple of weeks. Like, I know you got stuff going on. I'm sure like you got your reasons and not taking that kind of stuff super personally. That can go really far. So if you're in that situation where you're kind of self-advocating,

As a person with ADHD or really any other kind of situation or diagnosis, even if you're self-diagnosed, it doesn't really matter either way. Having those conversations can be hard, but it can go a really, really long way. And I think a lot of people get so used to kind of like playing the game of life on hard mode. And then when you get those accommodations, it's like, okay, maybe now it's on like medium difficulty. And that can make a huge difference, but it's also hard to ask for it.

One patron, Charlie, asked about deaf communities and the learning of sign language as being deaf or hard of hearing can be an invisible disability that can easily lead to unintentional social exclusion. And Maria Schoener, Scala Borealis, and Alex Joseph also asked about deaf culture. And I wanted to share here a recent chat that I had with Ologite Quinn, who wanted us to mention the century-long battle about teaching deaf children sign language.

especially wherein cochlear implant technology has created this ableist assumption that there is no need for sign language and that families and hard of hearing or deaf adults would no longer need it. And Quinn told me that without signed language, deaf kids often suffer language deprivation, including myself, they say. There's a lot of research currently in the psychological field on the adverse effects of language deprivation, such as mood disorders, anxiety,

sequencing and memory impairments, delayed cognitive function, and so much more, they say. And they continue, this topic is one that my community continues to bring awareness to. We have a lot of issues we fight for, but this one is the most prevalent and long-lasting one. And

Quinn said that though deaf researchers have been pointing out the benefits of sign language for decades, this is only now gaining traction after hearing scientists have conducted studies. And Quinn told me, I'm just hoping this won't be another case of my community being left behind and forgotten. And Guinevere also recently published an article titled Police Interactions with the Deaf and Hard of Hearing Community, Abuse, Autism, and Accessibility, which

opens acknowledging that police brutality is a salient issue in recent years, especially in the United States, and that Black, Indigenous, and people of color, as well as disabled people, experience higher rates of police violence than white and non-disabled people.

individuals. And research findings indicate that the deaf and hard of hearing community faces unique challenges when interacting with police, they write. And these include difficulties communicating, hearing status, misinterpretation of communication, the intersection of race and disability and accessibility concerns.

And they write that the consequences of these issues can be dire, often deadly. And police need thorough intersectional training on how to work with disabled people. And there need to be standardized, effective means for communication with disabled people. And that police must be held accountable for establishing this communication environment.

the use of force should be avoided at all costs and punished if used inappropriately. And I think another great point in their paper they mentioned is that a critical issue to consider is the role of police officers and that often police are dispatched when other social services are more appropriate or beneficial to the situation. So one of your research papers

talk about so many different facets of disability sociology that we couldn't tackle it all in one interview, but they have a really great YouTube channel with their different lectures that cover more on disability and the criminal justice system, pandemics, inequality in the distribution of illness and disability, dilemmas of medical technology. There's another lecture called Health and Political Economy and

and a full lecture on sexual health and sexuality. And on that note, you mentioned relationships, you mentioned dating earlier, and Molly Rupp wrote in saying, "'Dating with disability, is there a trick to navigating it without feeling shitty about myself or too needy? Right now, it's a great barometer to weed out the terrible people, but as a fat woman, dating can already be a nightmare. Adding on and needing some accommodations and generally constantly navigating rocky health things is daunting to trying to find a partner.'"

She says, yeah, I know this is maybe going to sound a little bit funny, but when I was doing my research on disabled sexuality, a lot of people saw that exact experience as kind of one of the positives, right?

because you can sort of weed out the people who are not going to be a good partner by how they treat you with that initial information. So if someone is really dismissive right off the bat about your disability, or they think that you're clingy or needy, or they want to write you off because of something like that very early on, that's probably not a good person for you. For real. And it sucks because if it happens over and over and over and over, and that absolutely can, that's really tricky to navigate and

It sucks, but sometimes what it tells you is like you kind of just have to keep trying, keep waiting until you find those people who are willing to be flexible, who are willing to accommodate and be respectful of those things and try to learn about you instead of putting you down for those things.

Because that's what a good partner should do is support you through that stuff, even if it is difficult. Because if someone cares about you, they will, right? Even if you're visibly disabled, a lot of people are just so unfamiliar with disability that they might have all these assumptions about what that means for, you know, what does it make me look like if I'm in a relationship with someone disabled? Like, what will my friends and family think? Or am I going to need to be this person's caretaker? Or just, you know, this whole thing.

messy storm cloud of questions and assumptions that can kind of really get in the way of getting to know somebody. And so if you can tough it out and, you know, have those hard conversations, that can be really, really helpful and that can go a long way. But I think we also have to realize that not everyone will be open to learning and being accommodating and being respectful. But yeah, dating can be really, really hard as a disabled person because of all that, you know, ableism and assumptions and just

people's fears and worries and misunderstanding. And having to be an educator about those things all the time is also exhausting. Right. Some people will kind of deal with those challenges by looking for other disabled people

That was a pretty common trend amongst a lot of the people that I talked to or that I surveyed was, you know, finding people with similar experiences. That can be a really, really good way to go. But you absolutely don't have to do that, right? That can be a personal choice. But I think it's really comes back to, you know, like finding people who treat you the way that you want to be treated in the way that you deserve to be treated and caring.

If you're somebody with marginalized identities, whether it's disability or any other marginalized identity, finding people who are going to be accepting is really, really crucial. If you're like, why isn't there a dating app just full of people who get it? And there is one and it's called Dateability, which as far as we could find, it's the only dating app for disabled and chronically ill communities. And it was founded by a disabled woman to create...

a safe space and an accepting space to create good connections for people with physical, intellectual and psychiatric disabilities. And I checked into the reviews of this datability app and a few folks said that they wish more people were on it and knew about it. So the datability app is free. So feel free to

Spread the word. Speaking of costs, patron Conchetta Gibson shared, can we talk about the additional social expenses and complications that come with being disabled? The extra time, appointments, phone calls, et cetera. And Conchetta writes, I've been dealing with chronic disease and brain fog my whole life. And suddenly when quote healthy people experience it from long COVID, it's now a national conversation and a thing worth researching.

I'm glad it has attention, Conchita writes, but it's absolutely not a new phenomenon. So yes, folks who have lived with disabilities for years and years have paid these longstanding prices, socially, financially, effort-wise, to navigate a society that was not built with them in mind.

And on that note, you know, a lot of folks asked about newly acquired disabilities. Lena Brodsky, Max Gutman, Bea, and first-time question asker Lindsay Burke all asked about COVID. Max asked, what have you seen about how COVID is influencing the sphere of disability sociology, both as a mass disabling event and an airborne illness that has been downplayed by those in power, they ask.

Yeah. So COVID has been a really, really interesting example of a lot of the things that the field was already looking at. Of course, we've seen a lot of people acquire disabilities or things like long COVID or post-viral illnesses. And I would have loved to see a lot more of those accommodations stick around, a lot more support for the people going through that. But

Unfortunately, we're not seeing too much of that happening. We are seeing a lot of people kind of getting back to business as usual, which puts a lot of people in a very difficult situation.

especially like our immunocompromised folks, like there are a lot of people that are still living in isolation. And that's just kind of their reality right now, because the rest of society is kind of, you know, like, no more masks, no more social distancing, people aren't really keeping up with their boosters all the time. And that creates a really difficult situation. But yeah, we saw a lot of issues, especially at the beginning of the pandemic, you know, as this started, where I'm

Very eugenicist attitudes of like, oh, well, it's only like old and sick people who are going to die. So I'm not worried. And, you know, just very problematic ideas about, you know, okay, do we just not value the lives of people who are older adults or people with preexisting conditions? Like, are they just collateral damage and that's fine?

And obviously that's, you know, really hard to deal with if you are in that community and you see society at large kind of having this attitude of like, well, those lives don't matter, right?

And what we did see also with medical triaging practices in ICUs and stuff, a lot of people with visible disabilities were being kind of turned away or shunned by those institutions, those healthcare institutions, because their lives were seen as less valuable. And so a lot of the time people who were prioritized in those triage situations are going to be like younger individuals, people without visible disabilities, people

And so a lot of people, especially like wheelchair users were really scared, you know, at the beginning of COVID people with chronic illnesses and preexisting conditions and older adults were really scared of, you know, what does this mean? What's going to happen? And unfortunately we did see kind of what we expected, kind of that worst case scenario where a lot of people did die. And a lot of people were permanently disabled and are permanently disabled because of the pandemic and the

It's really tragic to see that with that outcome, a lot of people's lives are changed in a way that is very difficult to deal with. And then the support is still kind of not there. And accommodations are still kind of not there. We're kind of back to normal, back to business as usual and back.

A lot of people are still struggling. People are still getting COVID. You know, the pandemic is not over. Just a heads up, the so-called flirt strains of COVID very much want to be intimate with you. And they have fun little features that help them evade antibodies and become more resistant to existing vaccines. But for the fall wave of booster shots, vaccine experts are recommending tailoring them to these new variants for some extra protection.

Now, how many people have COVID? I don't know. It's a great guess. The CDC no longer bothers tracking infections anymore. What we don't know can't not kill us, but there are wastewater epidemiologists who are testing for spikes in the poop in the sewers. And yes, we have a really great episode with Dr. Amy Kirby, who heads that program of environmental microbiology at the CDC, and we'll link in the show notes. Meanwhile, if you don't want to risk an infection...

or the chance that you might develop lasting or long COVID symptoms or giving them to others or killing others, you can still mask up. Oh wait, actually, no, shoot, you can't. Okay. According to this recent Forbes article titled, From Mask Mandates to Bans, Some Jurisdictions in the U.S. Are Doing a 180, There's a Movement to Ban Face Masks Indiscriminately.

In an ongoing pandemic, because the Forbes article says that advocates for bans say face coverings make it impossible for law enforcement to identify people who break the law, and that supporters of the ban say that it would help law enforcement crack down on pro-Palestine protesters who wear masks. For more on that...

Palestine and Gaza, you can see our recent Genocidology episode with the world's leading expert on genocide, Dr. Dirk Moses. But yes, roughly 5.3% of people are estimated in the U.S. to have long COVID symptoms, which occurs more often in people assigned female at birth, people of color, folks over 65, or people with underlying health conditions. Okay.

What is long COVID, right? The CDC says the most common symptoms of long COVID are fatigue, brain fog, and something called post-exertional malaise. But there are over 200 other symptoms and associated conditions like myalgic encephalomyelitis or chronic fatigue syndrome. And that's abbreviated to ME slash CFS, which can be absolutely debilitating.

And if you're familiar with other psychomers, Physics Girl, whose name is Diana Cowern, she contracted COVID right after her honeymoon in the summer of 2022. And she has scarcely left her bed since, if you've been following her story. And actually, coincidentally, or not coincidentally, because it is Disability Pride Month, this Saturday, July 6th, Diana is doing a live stream. She probably will not be talking. It's sort of a day in the life of what her life with

This condition is like our friends Simone Yetch and Vanessa Hill and Derek Muller of Veritasium, as well as Diana's husband, Kyle, and Ian Hecox are raising awareness and funds for long COVID research and ME-CFS. So you can look for Diana's handles at ThePhysicsGirl for more on that type of disability, and you can join the livestream.

And as someone who is immunocompromised myself, I do hope that we all just try to mask up and get vaccinations and try to keep ourselves and others safer. Now, many people wanted to know about allyship, but on a more personal basis. Andrew Stone had a question. How do you keep a relationship healthy when...

You're a caregiver, talking boundaries, not forgetting about oneself and the things that you want to do, but also being available for them. If someone's found themselves in a situation where they are now disabled or they have a partner, did any of your work look at that?

Yeah. And I also I have a little bit of personal experience with that kind of thing as well. That is a really challenging situation, especially if it's like a transition or a change that you go through with your loved ones where you become a caregiver when you previously were not one.

It's really important to prioritize your self-care and to make sure that you're still taking care of your own needs and not sacrificing too much or taking on too much in that situation, which is obviously easier said than done, but using as many resources as you can. So you'll last longer and be better at caregiving if you make sure to get the sleep you need, the help you need, and to do things for your own mental health to prevent a burnout.

But what are those resources to help out? Like there are a lot of government resources, a lot of mutual aid and community care resources that people can make use of. And it's kind of like the idea of how like every therapist has a therapist and that therapist has a therapist, like it goes up the chain. You absolutely need to rely on other people for social support to step in and provide care and resources to the person that you're doing caretaking for.

and try not to be everything for that other person all the time. Obviously, there are a lot of reasons why it's not always possible to have other support or other people in that situation. And so in that kind of situation, if you're the sole caregiver for someone and you don't really have any other help and you don't really have access to that mutual aid or community resources or government resources, if you're kind of running like a one-person show, try

Trying to take that time to do self-care and take care of your own needs and not neglect those needs is really, really important.

again easier said than done but depending on what works for you like you can do journaling to deal with if you've got like difficult thoughts and feelings to work through you know do some stretches like move your body if that's something that helps you feel good you can take a bubble bath like read a book that you like watch a show like whatever it is that makes you feel like yourself and to take care of yourself there's only so much time in the day and so whatever you can do to kind of

Band-Aid, deal with those individual instances of hurt or stress or frustration and then having those bigger moments to decompress as well. Time block, like three hours on Saturday, I'm going to do absolutely nothing or whatever it needs to look like for you.

And then also having those conversations, if you're able to with the person that you're a caretaker for, I think it's really good to be open and say like, hey, you know, like I'm really struggling right now with the amount of things that are on my plate. Is there anything that we could do to kind of compromise a little bit here? Like, is there anything that maybe I can take a break from doing for a little while and

It'll depend on kind of what the person's needs are, but if they're able to kind of take care of some of those daily living tasks themselves once in a while, and you can kind of step in here and there, perhaps that's a possibility. If it's kind of round the clock, like complete total care, then in that case, I think it's really important to have other people to step in as well. So you're not doing absolutely everything for yourself and another person, but it's

Even in that case, again, like trying to prioritize self-care wherever you can can make a really big difference. But it is a tricky situation to be in and it's okay to just acknowledge that sometimes too. And on the topic of what to acknowledge, Megan Lynch, our guest for the Carabology episode about not chocolate trees, wrote in,

But because systemic oppressions create a category and they other you, you identify by the category imposed by the oppressor, even when you're trying to dismantle the systemic oppression, in this case, ableism.

So Megan writes, we want to dismantle ableism and I'd like it if disability were eventually just seen as part of being human. Like some folks have brown hair, some don't. Not othered, not punished, not stigmatized. And Megan's episode on eating your local street trees is amazing. We're going to link that to the show notes. We talk about ableism and disability in that episode as well.

Now, in terms of identity, Addie McBaddy asked, how do we work through internalized ableism? And Addie writes, I have chronic pain from hypermobility EDS, and occasionally it's bad enough that I need a cane, but most days I look fine on the outside. So I have a hard time claiming I'm disabled.

Kyle Christensen wrote in and said, I live with type 1 diabetes. I try to live my life in a way that makes people think I have no extra limitations, which I obviously do have. In our society, Kyle writes, should I get over it and admit when I'm not functioning at 100% or keep pushing through it so no one thinks I'm less capable than others?

And other folks, Alana Wood, first-time question asker, Katie Dee, Ashley Oakey, Kelly B., Char Harrison, Olivia Parkinson, and Joe Ferentino also asked about owning a disabled identity when, in Joe's case, their partial hearing loss doesn't feel central to who they are. Bea Wilson and first-time question asker Ellie Drys also asked about living with chronic illness and disabilities here in our society. And any advice for disabled people about...

making sure their needs are met or dealing with just the sort of day-to-day crush of ableism or anything that you wish you knew? Yeah. I mean, again, the lived reality of being a disabled person can be really, really tricky. There are a lot of challenges that

non-disabled people might not understand and that especially like a person who's just acquired a disability might still be working through and discovering. And so trying to take care of your needs, obviously first you need to kind of know what they are. That can be a really great thing to work through in therapy or through journaling or meditation or whatever it is that kind of helps you process your own thoughts and feelings. If you're going through something difficult or what life practices make you feel fulfilled,

So for a lot of people, that could be things that they do work-wise, that could be spending time with loved ones, it could be hobbies, and just trying to really lean into those things that make your life feel worth living. Because if you don't have those things, then you're going to end up in a really difficult situation. That's great advice. I have a lot more advice for people with acquired disabilities. I think when people are born with disabilities, that can be a whole other kind of experience. And I actually don't personally have that experience. So-

I've learned a lot from other people who have gone through that. And a lot of the advice that individuals in that situation might give would also be useful to people with acquired disabilities.

But I think another really crucial thing beyond that stuff that you can do for yourself is surrounding yourself with people who not only encourage you to do self-care, but who also participate in your well-being. So people who, you know, listen to you and try to understand you and your disability and whatever it is that you're facing, that support and that understanding and empathy and sympathy can go a really, really long way.

Because if you're kind of dealing with it all on your own, that can be really isolating. They say that keeping the good people in your life and meeting new ones in places like support groups and online forums can help so much. Really just leaning into that support and cultivating healthy relationships with yourself and with others is kind of at the core of well-being in general.

And especially as a disabled person, it's really, really important to take the time and the space that you need, even if it's more than you think that you should need. We like to shit ourselves all the time in the disability community. So yeah.

You know, trying to avoid doing that if and when you can, you know, just giving yourself grace and being like, hey, this is actually really hard and that's okay. I'm going to deal with it. I'm going to, you know, ask for help. I'm going to do things that make me feel good and sometimes kind of letting go of responsibilities and, you

Saying no to things, even if you might not want to, can also be really good for your well-being. You know, we're all living in this late stage capitalist hellscape together. So we know it's hard. It's easier said than done to do things like take time off work. We can't always do that. But, you know, looking for those opportunities anywhere and everywhere that you can find them to increase your well-being is important.

really the best thing that you can do. This is good advice for literally every person. So every person listen to that. Last listener question. I feel like on a lot of people's minds, only a brave one person asked Becky, this assy seagrass scientist wants to know, okay, to use the big bathroom stalls. I'm overcome with guilt and decision every time. What's the word on this? Also a very good question. So in general, I would say if it's not for you, then you probably shouldn't use it.

just on the chance that somebody does come into that bathroom and they do need that stall. And there are, you know, three, four, five other stalls that you could have been in instead.

It's a little cramped and like bathrooms are kind of gross in public, but you know, the harm that it does to someone who tries to go to the restroom and then they can't use that stall, the one stall that is for them, you know, they're inconvenienced, they have to wait. And depending on what their disabilities look like, that might actually be a medical issue for them as well to have to wait, especially for like an extended period of time. So it's a little bit more respectful to leave those things for the people that they're designed for. Smart. I'm sure there's a lot of other people who are like, oh,

Good to know. I wasn't sure. Yeah. What about the hardest thing about what you do? I imagine ableism, ignorance, funding, so many challenges. Yeah, definitely just dealing with, you know,

fighting against those misconceptions and educating people on, you know, like the reality of disability. There is a lot of pushback on a lot of these topics. There's such a huge diverse variety of perspectives and experiences within the disability community. So that can be challenging. You know, I think

A lot of the time when I'm teaching, people have so many misconceptions that they come in with. So it can be kind of an uphill battle to get to that point where we're on the same page now. We're not using words that are slurs anymore. We've kind of gotten rid of some of those misconceptions that we're getting a little bit more open-minded about these topics. But interestingly, that same challenge is the reason why I like this kind of work. When we get to that point where people kind of

see that it's not that way and that they don't have to think about it in this very black and white, like disability is bad, non-disability is good kind of way, that is really fulfilling. So it's challenging to work through those conversations, but it's also what I'm really passionate about. So kind of a mix for sure. Is that your favorite thing about the work? That kind of intrinsic fulfillment? I think...

It's a big one. Another one would also just be understanding myself better. That's a big reason why I kind of went into the field. And I think learning about all these things, it's made it a lot easier for me to advocate for myself and to help other people in my life advocate for themselves too.

Being able to support people and understand these experiences better and understand myself better has made my own life a lot better. And so I think that ties in with, you know, being a sociologist and doing work within the field, but it always spills over into like every other part of life too, which is, it's really cool, but yeah.

It also makes me really annoying because I can't watch movies or TV shows or anything without just, it's like always in the back of your mind. So yeah.

Yeah, you're always thinking about it. It's wonderful that you can highlight these things and have other people look for them. For sure. Yeah, it's everywhere. So once you start seeing it, you really can't stop seeing it. It's everywhere. And that's true for everything in sociology. Sociologists, we're some of the most annoying scientists, for sure, because...

Like we're living in society all the time. We're studying society. And so it's kind of like if you talk to a fish that's like a little too aware of the water. So it's definitely interesting, but that can be like a challenge and kind of a bonus all in one. Well, thank you for educating me and us so much. This has been great. Thank you for answering some of the questions that are

hard to ask, but the more we learn, the better, you know? Yeah. I'm happy to be here.

So ask expert people earnest questions, but not strangers, the intrusive ones. So follow Gwen on social media at the links in the show notes. Definitely check out their lectures and slides on YouTube, which we'll link right in the show notes. There's so much more to cover and consider this an intro to the topic or kind of a free Costco sample into their work. Much more inventory online. Their YouTube channel is awesome. You can find us at Ologies on X and Instagram. I'm Allie Ward on both. So if you're interested in learning more about the show notes,

Smologies are their own show now. You can subscribe for weekly Kids Safe episodes that are shorter anywhere you find podcasts. Look for the colorful new logo art that was designed by Bonnie Dutch. Aaron Talbert admins the Ologies podcast Facebook group. Aveline Malik makes our professional transcripts. Noelle Dilworth is our scheduling producer. Susan Hale manages to be a managing director every week. Kelly R. Dwyer is on top of the website. Jake Chafee edits beautifully in the very empathetic Mercedes Maitland of Maitland Audio is our lead editor. Nick

Thorburn of the band Islands made the theme music. And if you waited out until the very end of the whole episode, I tell you a secret. And this week, I was walking Grammy in a park near where I'm staying and I looked up and there was a mulberry tree.

full fruiting-ness right above my head. So many mulberries and I quickly Googled, "Do mulberries grow in Chicago? Are there any poisonous berries that appear to be like mulberries?" No, good to go. So I just started picking these mulberries and eating them as the sun was going down. It was me and Grammy in the park. And then I saw a couple of fireflies and I was like, "Heaven, heaven. Sometimes everything around you sucks."

And then sometimes you go, well, look at that. There's a mulberry tree. That's pretty good. Okay. Bye-bye.

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