Disability Is Not Scary!

Episode Transcript

Keith Casebonne  (00:00:00):

You're listening to You First: The Disability Rights Florida Podcast. In this episode, we discuss why (hashtag) Disability Is Not Scary. Hey, welcome to You First. I'm Keith.

Maddie Crowley (00:00:28):

And I'm Maddie. And today we have a fun episode for you. It's our very first Halloween special episode. Whoo.

Keith Casebonne  (00:00:38):

Yes. Don't be scared. It's all going to go fine. I think we're saying that mostly to ourselves than the listeners, but sure.

Maddie Crowley (00:00:45):

No, literally. No, but as we sit back and think about the topics that we've done so far, and just reflecting on how we are trying to reframe and re-center disability in a lot of popular conversations that haven't centered disability, one of the controversial topics is about Halloween. And boy oh boy, are we going to get into it. Literally, Keith, as I'm sitting here prepping and have my notes on my phone, I just happened to open Instagram and the very first video that comes up is a ad for... For folks that are listening, I'm from outside Philadelphia originally, so a lot of my awareness on this issue is rooted to that area because shocking, there is a lot wrong with this conversation that we're going to highlight.

(00:01:44):

So anyways, the examples I'm going to give are from, primarily, that area, specifically. And before we get started, we just wanted to add a little note regarding some of the content of what's going to be shared because we're discussing problematic things within disability history and the depiction of people with disabilities, and BIPOC folks, we wanted to share a content warning that there will be mentions of violence against these communities, including colonialism, institutionalization, eugenics, incarceration, and slavery.

(00:02:22):

So please take your time. Feel free to pause the show and come back. Feel free to not engage. Whatever you need, please center you and your needs. In Philly, there's a place called Eastern State Penitentiary, and it's like a old prison, and they do Halloween attractions there in scary-

Keith Casebonne  (00:02:44):

No, an old prison. What can go wrong? That sounds great.

Maddie Crowley (00:02:47):

Literally. And as we continue this conversation, this is going to be a bigger theme, but we're going to be getting into how a lot of the tropes used at these haunted attractions, or characters they have, actors run around and scare people with are primarily rooted in ableism, anti-Blackness, oppression of low income people, et cetera. So it's just like, oh, I'm looking at this ad, and it's, oh, someone with a disfigured face mask running after someone. This is one of my biggest pet peeves. I can't even call it a pet peeve, but it's one of the hills I will die on as far as just-

Keith Casebonne  (00:03:31):

That's a big difference, pretty pet peeve and the hill you will die on.

Maddie Crowley (00:03:36):

Yeah. But I think this is such a unique issue, and I don't mean to use unique in a way to sidestep how problematic it is. I mean to say that it's like, it really hasn't been investigated or talked about openly, I think, as much as it should be. And listen, I love Halloween. I like all things creepy. I like a good scary, little ominous moment, but I'm not like... As soon as I see that it's veiled or coded with ableism or racism, I try to clock it pretty fast because so much of these attractions are just rooted in so much just really violent and gross history. Anyways, I just got right off the bat and talking about this because I was like, you will not believe this reel is the first thing I see. I can't believe it.

Keith Casebonne  (00:04:39):

It couldn't have been more perfect to kick things off to see that-

Maddie Crowley (00:04:41):

Literally.

Keith Casebonne  (00:04:42):

... in my head, the way I compare this to other things that have happened in the real world, if you will, out there. So hopefully, everyone, I'm sure there's a few exceptions, unfortunately, still out there, but most everyone nowadays would not go out in a costume that included black face.

Maddie Crowley (00:05:03):

Literally.

Keith Casebonne  (00:05:04):

In other words, a white individual would not put black paint on their face and go out and do that nowadays. And again, like I said, there's probably some small group that sadly still do, but for the most part, we've all heard this. We know that, that is wrong and we all are of that mindset now that, no, that is insulting, it's demeaning, it's demoralizing, and you don't do it. That's the same thing that exists with portraying disability at Halloween or any time of the year, but it mostly happens at Halloween, with costumes and so on, events, like you mentioned, the prison having the haunted house and stuff like that. But for some reason, we haven't heard it the same way. And so people are still out there doing exactly what you're saying. They're portraying these hyper scary versions of mental illness or physical disability of some kind. And it just keeps happening because for some reason, as you alluded to it, it's not a talked about mainstream subject that we shouldn't be doing this. And that's a lot of the reason why I think we're putting this episode together.

Maddie Crowley (00:06:06):

Yeah. And I think that really just emphasizes how ingrained ableism is in our society and how quick we are to be cool with incarcerating people. When you say it out loud, it's, "Whoa, that is wild." But it's literally what-

Keith Casebonne  (00:06:27):

It is.

Maddie Crowley (00:06:29):

Anyways, we'll get into it. And then for those who are familiar with the term, ableism, just like, I could give a more large definition but for the sake of just plain language and ease, just think about it as the discrimination of people with disabilities. So you have all these kinds of isms, racism, sexism, et cetera, ableism is the discrimination and violence against disabled people.

Keith Casebonne  (00:06:56):

Yes, yes, exactly.

Maddie Crowley (00:06:58):

But there's a lot to cover, Keith.

Keith Casebonne  (00:07:02):

There really is.

Maddie Crowley (00:07:03):

Where should we start?

Keith Casebonne  (00:07:04):

I think it makes sense to dig into the background of some of this stuff and why is it the way it is. So if you want to start discussing maybe some of the history of... Let's dig in with the ugly law. Let's start talking about that. That sure goes way back and that kicks things off, I think.

Maddie Crowley (00:07:19):

I think that is a great place to start. And often in my research and in prep for this conversation, it's not something that I think is properly talked about or addressed. And for those that are listening, within the 1800s and until 1974... Write that down.

Keith Casebonne  (00:07:40):

I was alive-

Maddie Crowley (00:07:40):

Literally.

Keith Casebonne  (00:07:40):

... when these... Odd.

Maddie Crowley (00:07:47):

Cities in the United States basically pass these things that are now in common terms referred to as ugly laws. And these laws aren't exactly what they sound like. They are essentially saying that if you are, quote-unquote, "unsightly" or if you appear that you're going to be begging for money or have a visual difference than, quote-unquote, "what is normal or average". So these laws really targeted disabled people and low income people. So for example, in San Francisco, it was literally illegal for people who had diseases or chronic illnesses that were, quote-unquote, "mutilated", had facial differences, had limb differences, et cetera, to be in public. And I don't mean to laugh, and-

Keith Casebonne  (00:08:49):

Just absurd.

Maddie Crowley (00:08:49):

... I think it's so disgusting that this was ever a thing. But this is quite literally, I feel like part of why people with disabilities and those that experience impoverishment, which is a strong overlap between disability and being low income, et cetera, there is such a big overlap that this often targeted the same group of folks. And because these people were either imprisoned, sent to institutions, stayed in their family homes, there was this large perspective of shame, and people felt like they needed to hide one for safety of not going to prison or being charged with a crime, just because of how they look.

(00:09:48):

But it has contributed to how invisible the community has been writ large. And I think why we're also seeing such a lack of awareness or intention behind why these costumes, like at Eastern State Penitentiary, why those characters that actors play have deformed masks on. I don't mean to say we. During the time that ugly laws were enacted and enforced, people quite literally were not in public. So people were not around exposed and inviting and welcoming to people that, quote-unquote, "look different from them". And therefore, it really contributed to how there just wasn't any awareness.

(00:10:47):

There was a fear of these people when they were in the same space as you. And I think all of this comes back to just the overall theme that non-disabled people are scared of disability, and it's not necessarily that they're scared of someone with a disability in the present day. They're scared of it happening to themselves because there's this idea that disability is scary, that it is bad. We all can acknowledge that people with disabilities face discrimination, that they have to pay more money for healthcare, that they experience housing discrimination or have harder time in life. So we all acknowledge that the system is not set up for folks with disabilities, and that reinforces the fact that non-disabled people are scared of disabled folks. So I think this is just a core piece of how this whole conversation is going to explode from here.

Keith Casebonne  (00:11:51):

Yeah, no, that makes a lot of sense. And as I was reviewing some of the content about the ugly laws, I was shocked to see that in some places, if someone even had a limp, they would be kicked off the street. They would be shamed and unable to appear in public. So we're not even talking about, yes, there were the more extreme examples, but even just a limp. It's hard to even fathom that nowadays. But at the same time, knowing that place existed and knowing the context of it makes a big difference in seeing what's going on now. And while it's not as maybe overt as you can't be in public because you have a disability of some kind, it's still... like you said, it shaped people's thoughts and the way societies function. I will just quickly add that I noticed that in Pennsylvania, their law also included language that applied to cognitive disability, as well as physical disability.

(00:12:47):

So if someone had what we would probably now consider a developmental disability or intellectual disability, that would be a reason they couldn't even appear in public. And someone that grew up in Louisiana and now works in Florida, I'm always thinking of the south as having these kind of things. So sorry, it's Pennsylvania, but it is refreshing to see that this is not just a southern thing.

Maddie Crowley (00:13:09):

No, no. And I think that is really important to call out, because oftentimes, I think people poke at the south and go, "Oh, the south has all these problems. The south is the least accessible, or the, quote-unquote, "racist" place to live. But it's, no, we're not doing that. We're not going to excuse or have some level of, I don't know, moral hierarchy where the northeast is distinguished and all this stuff. Let's talk about what that means. Let's talk about what being morally distinguished means and how that's mostly because there's a lot of academic institutions and people of wealth in this area, but it doesn't mean that those things aren't happening or that they haven't happened. And I think that's a really important thing to note, especially when we talk about institutions and things like that. The most famous US institution for people with developmental disabilities was in New York, Willowbrook.

Keith Casebonne  (00:14:16):

Well, that's very true.

Maddie Crowley (00:14:18):

So it's not to say that wasn't happening in the south, because it was happening everywhere.

Keith Casebonne  (00:14:21):

Everywhere.

Maddie Crowley (00:14:25):

Oftentimes, the south is the scapegoat, and I don't think that's always fair because I think it chooses to push the conversation away from accountability in other parts of the country. Anyways, that was another-

Keith Casebonne  (00:14:41):

Nope, totally.

Maddie Crowley (00:14:41):

... dislike. Let's settle that right now.

Keith Casebonne  (00:14:45):

There you go. That's all good. No, and I agree, and you're right. It's a national, it's a global problem, if we're being honest. It's a global problem. Some places maybe deal with it better than others, but in the end, it's everywhere.

Maddie Crowley (00:14:58):

And I think, like you mentioned, with folks with developmental disabilities or intellectual disabilities being a part of that list, for example, in Pennsylvania, this time is exactly the time that institutions were still very much present in the United States. Willowbrook was still open in 1974. The expose, I think, came out the year before... in '73, if I'm right. And it was still open later in the '70s. And for those who are unaware, Willowbrook is like the, quote-unquote, "state school". It's not a state school. It was a place where they housed... which is not even the right word for the, basically, torture that happened there. But it was for, specifically, people with intellectual developmental disabilities and coincides with the ugly laws, coincides with this fear of disabled people, with the eugenicist movement to eradicate these things from the population. So it all weeds together.

Keith Casebonne  (00:16:15):

They're all feeding off each other. Yeah, exactly. And we're going to have a future episode soon about Willowbrook and more, and so make sure you subscribe to catch that episode when it comes out.

Maddie Crowley (00:16:21):

For sure.

Keith Casebonne  (00:16:21):

We're going to really do a deep dive and we've got a couple of great guests, so. It's all I'll say right now, but yeah.

Maddie Crowley (00:16:26):

It'll be good.

Keith Casebonne  (00:16:26):

You're going to want to hear it. Yes, Indeed.

Maddie Crowley (00:16:28):

It's a part of history, American history, not even disability history. It's a part of disability history that the disability community and folks that work to support or advocate for the disability community don't even know, let alone the broader American population, because it's insidious. It's a part of... Okay, I'll save that for the episode.

Keith Casebonne  (00:16:55):

That's right. It's the teaser for the episode. Definitely check it out. So let's talk about another aspect of some of the earlier things that were happening around the country that related to this idea that disability is something to be feared, or maybe more in this case, amused by. And so if you think of carnivals and circuses and those sorts of things, they would use that idea of disability as something that would bring people in. Look at this anomaly. We've never seen someone that looks like this, so come to our circus and come to our... So let's talk about that a little bit and what that looked like and how that further shapes society's view of disability.

Maddie Crowley (00:17:36):

And I'm just, I don't know, sitting with just the weight of that, that disabled people were and still are monetized by non-disabled people, aka, used as an object in order for non-disabled people to get money, because let's be honest, whether they joined willingly, whether they were excited to be a part, that's their choice. We're not saying, oh, people with disabilities were wrong for being part of the, whatever, carnival, or I don't know, different productions of that kind, because I'm not going to take their autonomy away. It's more about just how that was some of the only options for work that these people had, because if they weren't there, they were, again, either in hiding or in large scale institutions at-

Keith Casebonne  (00:18:37):

It could've been seen as a way of advocacy for some of those people to, like, look, I'm going to be seen now. It was the people's amusement. It was far from ideal, but we don't know the motivations that some of these people may have had to take these jobs and travel around the country. So like you said, we don't want to necessarily put that down.

Maddie Crowley (00:18:53):

What you do with your experience and your bodies is your choice. But I think the main thing is they were used as objects of amusement. So non-disabled people and their families would bring their kids and be like, "Ooh, let's point fun and throw things at the..." They were treated like animals, like zoo animals in a pen. And it is so much of an us versus them narrative of, we can go and view the conjoined twins, or the bearded lady, or different historically famous attractions at these kinds of things. But at the end, it really was that non-disabled people were going there to poke fun and prove their humanity as compared to the people that were objects of these carnivals and attractions of these shows. And that separation of humanity and the distance that people take from disability and difference is very stark, I think, in this specific example, and we'll continue to get into it, but those are costumes and non-disabled people dress up as for Halloween.

Keith Casebonne  (00:20:23):

That's right, that's right.

Maddie Crowley (00:20:24):

So it's like, I don't know, it definitely plays a part in the historical context of this conversation.

Keith Casebonne  (00:20:34):

And I would say, too, that this is another thing that I feel like to a degree, it's still happening. At the time we're recording this, I'm 51 years old, and I remember, as a kid, circuses would come in town and you would see those same... the world's smallest person, or the bearded lady or things like that. And as a kid, I wasn't taught anything different. I didn't know any better, and I thought that wasn't... "Oh, wow, it's amazing," because it wasn't explained. My parents didn't say anything about it. I don't know what they felt about it but it wasn't conveyed to me, other than, this is normal, this is an attraction.

Maddie Crowley (00:21:16):

Yeah, it reinforces difference. Sorry, go ahead.

Keith Casebonne  (00:21:19):

Yeah. Oh, no, that's fine. As you were talking about this, I remembered, not that long ago, I was definitely adult. I definitely had kids. So we're talking about maybe 10, 15 years ago at most, some state fair or something I went to had similar... No, it was an illusion. It was something with mirrors, and it wasn't a real person per se, but does it matter? It's the same concept. It's the same idea that this is some anomaly of a tiny person that exists and-

Maddie Crowley (00:21:51):

It's almost worse.

Keith Casebonne  (00:21:53):

... is still there.

Maddie Crowley (00:21:53):

I don't want to say it's worse because I don't want to negate what people with disabilities went through, but it's okay now if it's with mirrors to show that it's not... That person can walk away, or move away from that mirror and not have that experience. And that's where-

Keith Casebonne  (00:22:16):

Yeah, even less is... I get what you're saying.

Maddie Crowley (00:22:19):

Yeah. It's like, that's even more problematic in a way because it's like, you get to... And we'll talk about costumes, for example, if you wanted... for people that use a cane for a costume or a wheelchair for a costume, a non-disabled person using it, you're not then, November 1st, using that until next Halloween. You don't have the experience of what living with that is actually like, and you get to just put it on for a day, just for a costume for a character that may or may not be even played by a disabled doctor in the first place. Anyways, we'll save that-

Keith Casebonne  (00:23:05):

No, that's a perfect analogy.

Maddie Crowley (00:23:06):

We'll save that-

Keith Casebonne  (00:23:06):

Yeah, that's exactly right. I see why what you're saying being worse is that it's not even... At least before, it was a person with a disability making a choice. It was their own choice. It was exploitive. Again, this is an able-bodied, so-called individual, portraying an individual with a disability. And in that sense, it's worse.

Maddie Crowley (00:23:26):

It's a different dimension of ickiness.

Keith Casebonne  (00:23:30):

But it was still there. It was still advertised as an attraction to see this anomaly of nature or whatever. And I was appalled. I couldn't believe it. And I'm an adult. Years later, and I'm way more aware of this kind of stuff. And I just shook my head and I was like, my kids went to go see it, and I'm like, "We're not going to go see that. We're going to move on." And they're like, "Why?" "I'll tell you later." But it started a conversation, and we talked about it later, not at the fair, but later, we had a conversation and they learned a little something about it, which I didn't when I was younger.

Maddie Crowley (00:24:01):

And I think that's the difference, and that's what's important. I think in talking and researching about this episode, I was looking into the emotional violence that was done at these places too, because it's not that people were going and being like, oh, I'm going to shake this little person's hand. Thank you so much for being here, and sharing about your experience and showing us and informing us about what your life is. Especially the parents who willfully brought their kids to these things and then didn't have any kind of conversation about, some people are different, some people experience disabilities and their disability is okay, and it's nothing to poke fun at, and we won't be going back to a carnival ever again. And I think that probably is still happening today at that very same fair that you went to, that-

Keith Casebonne  (00:25:00):

Probably.

Maddie Crowley (00:25:01):

... parents brought their kids and were like, "Oh, look at this, look at this person, they're different," even if they're not actually someone with a disability, "Okay, let's move on and see the next ableist depiction of a person." I think your experience and what you showed to your children was incredibly valuable, and unfortunately, is probably not what's happening with the majority of folks that were attending.

Keith Casebonne  (00:25:31):

Unfortunately. You're right. So it's still going on. So other than these traveling carnivals and things like that, we've also got... There's even museums out there that are still portraying this stuff. So let's talk about the... is it the Mutter Museum or? Not sure.

Maddie Crowley (00:25:48):

I've heard people say Mutter. I've heard people say Mutter, Mutter. Anyways, it's a museum, quote-unquote, in "Philadelphia". And it's human and, I don't know, just all, quote-unquote, "oddities", whether it's specimens or bones, and it's like, I don't know, you have the... There's a core of people that like the creepy and scary stuff, whether they like to listen to scary stories on their favorite podcast, or they like to get really fascinated and fixated on differences. And one of these places that's actually under a lot of scrutiny at this present moment, they're considering going through and deciding what, quote-unquote, "specimens" they're allowed to keep is the Mutter Museum. So this museum has, I think, 10,000, quote-unquote, "oddities" and remains of people. And essentially, it's the skeleton of conjoined twins, or I don't know, a, quote-unquote, "deformed" X, Y, and Z part of the body. And the thing that is really telling about this place is that a lot of people within the disability community and those of indigenous and racial minorities have a lot of issues with it because a lot of these things that they have on display weren't ethically taken or ethically sourced.

(00:27:41):

So you're talking about remains that may be hundreds of years old that someone 100 or so years ago digged up from a ritual site or a burial site of someone of a different culture that they didn't have the permission of the person who they're taking up, obviously, because they're no longer with us, the family or extended family of that person, the culture of those people, potentially, the country of most people. So it just has a very strong colonialism and grossness to it, because a lot of these specimens were taken without people's consent. And again, it's in the same theme of what we're talking about. It is used to go in and view with medical curiosity and creepy intrigued about, oh, this person may have looked like this, or this is their remains. And it's just, can you all find a different hobby? Don't you have something better to do than ogle at what somebody looks like? Again, it's this frame of, oh, I can ogle at that, or I can... Is ogle a word? I can look at that.

Keith Casebonne  (00:29:09):

Ogle, ogle, I'm not sure.

Maddie Crowley (00:29:11):

I don't know. I can view that or perceive that and be like, "Oh, that's really cool and different and weird and strange and creepy." And I can say that because that's not me. And we, as people with disabilities, or indigenous folks, or folks of racial minorities, can know what that feels like and know that when something's happening, that's not okay. So that's what a lot of that museum is comprised of, and essentially, why it's experiencing current backlash. I read a piece in Disability Visibility, which is Alice Wong's collection of webs, podcasts, and blogs and books and everything by disabled folks, and someone recently wrote an article about this specific topic. So if anybody's interested in learning more-

Keith Casebonne  (00:30:06):

I see.

Maddie Crowley (00:30:07):

... definitely go check it out, because it definitely informed a lot of my perspective and my discomfort that I felt about it.

Keith Casebonne  (00:30:17):

Yeah, I bet. And I'm looking at their website right now, and I'm looking at some of the... There's current and past exhibitions on here. Some of the past exhibitions, first of all, so there's one that is, I'm quoting them, "Examining the shifting perceptions about abnormal human development from fear and wonder to curiosity and clinical science." The name of that exhibition is called Imperfecta. I mean, just, I know. And then there's some other things of tracing the remains and so on. There's a few broken body suffering spirits, is another name of a previous... But even their current ones, it's not as blatant as some of that, but there's a study about the anatomy of conjoined twins. There's something called Harry and Carol, which looks innocent enough, but when you open it up, it's regarding FOP, which is an ultra-rare disease that caused their bodies to grow bone where it doesn't really grow.

Maddie Crowley (00:31:18):

I have a friend with FOP, two people I know with FOP, which-

Keith Casebonne  (00:31:21):

Oh, okay.

Maddie Crowley (00:31:23):

... is very rare. And even the picture that's used on the website seems like, oh, this vintage person and et cetera, and it's like, you all, these people are still here. These experiences are still present, and you're not addressing-

Keith Casebonne  (00:31:42):

Exactly.

Maddie Crowley (00:31:42):

... what life is really like to live with these conditions. And you're only painting it as this oddity or weird or negative thing, when it's like, you all, they're doing good. They're here and they're not in a museum. I think, too, something that just came up for me is the idea that these things are past tense, oh, these remains and... what is that? X going of, or mummification of these... I'm looking at the conjoined twins on the screen. It's viewed as something that is past tense and, therefore, archaic and old and not happening.

Keith Casebonne  (00:32:22):

And we can look at that, it's fine, and it's history, it's old. We don't do that anymore.

Maddie Crowley (00:32:27):

I think-

Keith Casebonne  (00:32:27):

Really?

Maddie Crowley (00:32:28):

... it's, one, those people are still here, but two, it contributes to this idea that... and I know this is basically saying what I just said, but that these people aren't still here, or that they shouldn't still be here, which is a very eugenicist frame of thinking that I feel like is really important to call out when it subtly happens like this.

Keith Casebonne  (00:32:49):

Exactly. And speaking of things that are still here, we have plenty of institutions where people with disabilities, especially, there's so many institutions that are strictly for people with mental illness, they exist, they're existing today, they're there, and again, further perpetuating the idea that this person has some sort of disability. They should not be in the community, so let's put them in this institution. Over-institutionalization is a major issue, and it has been for a long time. And even though there've been lots of legislation and the laws and the passes that are supposed to start encouraging, bringing people back into the community and shutting down institutions, there are still plenty of them out there. And so that idea of these people are an institution because they are, quote, "locked away" because they have some reason to be locked away, again, adds to fears and stereotypes.

Maddie Crowley (00:33:41):

And I think the connection that's really important for folks to make is all we had... If you do know about Willowbrook, which is the most famous institution that created our network of protection and advocacy for people with disabilities, or you think about Jim Crow, even connecting this because it's all connected, thinking about the deinstitutionalization and, quote-unquote, "movement" away from slavery, and you talk about the carceral system, this is the same exact conversation because slavery didn't go away, it just changed. Institutionalization didn't go away, it just changed. So you have places like Willowbrook or in Florida, in Gainesville, which is now called Tacachale. I'm probably really not saying that appropriately.

Keith Casebonne  (00:34:38):

I think that's right, Tacachale, I believe.

Maddie Crowley (00:34:41):

Which I know maybe I'm getting slightly off-track, but that's an indigenous word, and it's just, you're on indigenous land, using an indigenous word to call an institution for people with disabilities. I'm like, okay, there's so many things wrong.

Keith Casebonne  (00:34:55):

There's just layers upon layers.

Maddie Crowley (00:34:56):

Yeah, there's layers and layers. So this place was originally called the Florida Farm Colony, which warehoused people with disabilities in the 1920s and through 40 or 50 years. And when you think about, we shouldn't be treating people with developmental disabilities, intellectual disabilities, physical, whatever, mental health disabilities this way, we shouldn't be warehousing them over drugging them, et cetera. And we'll, again, listen to the upcoming episode about Willowbrook to learn more about that.

Keith Casebonne  (00:35:30):

Oh, yeah.

Maddie Crowley (00:35:31):

But when no funding or energy or effort is put into meaningful home and community-based services, these people were deinstitutionalized or brought out of that very tragic and unsafe space and essentially, didn't have anywhere to go. And they became either unhoused, they got wrapped up in the criminal justice system because they didn't have the services they needed. So all of these pieces tie together. Anyways, I just wanted to lay that foundation before we got into talking about how these institutions are still around because they are, maybe not in the same exact way, but we still have mental state hospitals.

(00:36:21):

So because of that history and because of the way that people with disabilities or people with mental illness were treated in those places, again, not given proper resources, education, food, they were over-medicated, because of the environment, not their condition, they were changed and they were violated and had violence done against them in a way that made them appear or act in ways that maybe they wouldn't have otherwise. Sorry, I get choked up when I talk about this. What's so incredibly frustrating is not that, yes, institutions are still around and that they shouldn't be, but that the depictions of mental illness were literally created by non-disabled people, because of the harm that they put disabled people through.

Keith Casebonne  (00:37:33):

Yes.

Maddie Crowley (00:37:34):

So the stereotypes that exist are reinforced by non-disabled people, but they're also quite literally created through the harm that they did. It literally boils my blood whenever I talk about this with people, because you are scared about mental illness or disability, not because of what it actually is. It's what it was created to be by non-disabled people. And I think especially when we talk about places or attractions for Halloween, for example, outside Philadelphia, like I already mentioned, the Eastern State Penitentiary in Philly, or we have, quote-unquote, "Pennhurst Asylum", which is, again, one of these really famous institutions that housed and discriminated and, frankly, killed people with disabilities, and people with mental illness are now reopening their grounds and having actors dress up-

Keith Casebonne  (00:38:49):

Oh, God. I think I see where this is going.

Maddie Crowley (00:38:50):

... like, people with disabilities or people with mental illness, to scare people that go for a thrill for Halloween. And it's, how did we get here? How did this get so backwards? I could literally cry talking about it, but it's just like, people that go to these places too, they aren't informed about the history of that place. And even if they are, it's not to the full extent of what it should be. They could know that, oh, this was an institution or, quote-unquote, "asylum" or mental health hospital. Those places weren't meaningful places for anybody to live. Anybody even without a disability, without any condition, would go to those places coming out the same way that the stereotype depicts those people, they would be permanently changed for the rest of their life because of the dehumanization and harm and violence done to them.

(00:39:53):

So it's not even a conversation about, oh, this is like a stereotype, that's actually real about people with disabilities or mental illness. It was fabricated. And now you're quite literally doing haunted house tours with people dressed up in straight jacket, running after people. Are you serious? It's, one, not only offensive, but two, contributes and continues that violence against people with mental illness today. We scapegoat people with mental illness every single time there's a mass shooting in America, which literally doesn't happen anywhere else in the world because of our gun policy. Anyways, maybe I'm getting off-topic but it's-

Keith Casebonne  (00:40:39):

And there are people with mental illness around the world, and they are not-

Maddie Crowley (00:40:40):

Literally.

Keith Casebonne  (00:40:40):

... picking guns. That's not what it is. That's not what's happening. I know.

Maddie Crowley (00:40:47):

It's literally like you're scapegoating someone to ignore the problem at hand. And people with mental illness are more at risk for being incarcerated, more at risk for being institutionalized in psychiatric facilities that reinforce harm, are victims of interpersonal violence, et cetera, et cetera, et cetera. So it's-

Keith Casebonne  (00:41:11):

Way more likely to be a victim of violence than the perpetrator of it.

Maddie Crowley (00:41:15):

Yes. So it's like, how are these things even allowed to exist? How are people able to do these things? How are they able to have these haunted house tours or asylum tours of these places where eugenics literally was in formation and happening? I can't even wrap my mind around it.

Keith Casebonne  (00:41:35):

And like you said, they don't know the history. They don't know the reality. What they know is what they see in movies, TV, video games, things like that, that perpetuate those myths of what a mental hospital or, again, asylum. I hate the word, asylum. I hate saying the word, asylum. But that's to use the term that's portrayed, a very common franchise in comics and video games is the Arkham Asylum in Batman. And there's literally a video game that's all about dealing with mentally ill criminals, essentially. And so this is what kids learn and they play on, and adults too. Adults have video games, obviously. And all these things are just perpetuated. And so when someone turns an old facility like Pennhurst into an attraction, no one blinks an eye because it's like, this is what we all know. This is reality.

(00:42:27):

At the very least, I would be so impressed if you went through the whole experience of this big haunted house, I guess, essentially, what it really is, and then at the end, you have to sit down and have to watch a 10-minute video about the real history of the place and how it's damaging to people. And that would blow my mind if anyone actually did that. And even still, does that excuse what they're doing prior... I mean-

Maddie Crowley (00:42:47):

No.

Keith Casebonne  (00:42:48):

... I'm not opposed to a good haunted house. Again, I don't have a problem with-

Maddie Crowley (00:42:52):

There's ways to do with that aren't offensive.

Keith Casebonne  (00:42:54):

Exactly.

Maddie Crowley (00:42:54):

You can enjoy Halloween and not hate disabled people. I love Halloween, I'm disabled.

Keith Casebonne  (00:43:01):

Do we have to actually say that? But I think you're right. Sadly, we have to say that out loud.

Maddie Crowley (00:43:07):

Yeah.

Keith Casebonne  (00:43:07):

Oh gosh.

Maddie Crowley (00:43:09):

You can enjoy a scare. You can enjoy a jump scare. You can enjoy scary movies, but you can also acknowledge where some of those tropes come from. You can also acknowledge and not contribute to facilities or creators playing on tropes. We're not saying don't love Halloween or don't dress up as something for Halloween.

Keith Casebonne  (00:43:31):

Absolutely.

Maddie Crowley (00:43:31):

Literally just have a thought-

Keith Casebonne  (00:43:32):

Go out, take your kids trick-or-treating. It's a blast.

Maddie Crowley (00:43:34):

Have a though.

Keith Casebonne  (00:43:35):

Whatever. Do it. Yeah, have a thought, have a thought. That's a good segue though into something else, the idea of... the backstory of a zombie. We think of a zombie as just... Obviously, we know it's a undead... a human who has died and they're now reanimated and they live on human brains or whatever. That's what we know in the modern portrayal of a zombie, but you learn so much more about the background of that.

Maddie Crowley (00:44:01):

And this stemmed from about two or so weeks ago, I learned that the word spooky was not necessarily appropriate, or not even necessarily appropriate, it's so normalized that I think it's now starting to be discussed as, hey, maybe we shouldn't say this anymore because the word, spook, and I'm really sorry if me saying that is contributing to the problem, is actually a slur against enslaved folks in early America. So it started me going down this path of trying to understand, not only disability, but also other components of discriminatory tropes that are used during Halloween. And that's how I came across the history of zombies. There's a great article from NPR called Zoinks! Tracing the History of Zombie from Haiti to the CDC. I'm just going to read it, if that's okay, just a quick blurb from it because it lays it out perfectly, and I don't want to take credit for literally exactly what I learned.

(00:45:13):

So it reads, "While there's a long history and fascination with animated corpses in American literature and cinema, zombie aren't originally a product of the American imagination. The undead corpses actually trace their roots to Haiti in Haitian Creole traditions that have their roots in African religious customs. According to Haitian folklore, the book, Race, Oppression and Zombie, recounts that zombies are the product of spells by a voodoo sorcerer called bokor. The word is believed to be in West African origin and was brought to Haiti by slaves from that region. The concept of zombies would further evolve with the creation of the voodoo religion. In an essay for the New York Times, last year, University of California, Irvine, Professor Amy Wilentz called zombies a very logical offspring of new world slavery. According to Wilentz, 'Because slavery in colonial Haiti was so viciously brutal, death was the only real escape and seen as a way to return to Africa or Ian Guinee,' which translates to Guinee.

(00:46:22):

As she writes, 'Suicide was the slave's only way to take control over his or her own body, and yet the fear of becoming a zombie might stop them from doing so because of that religious context. The final rest in green, leafy heavenly Africa with no sugar cane to cut and no master to appease or serve is unavailable to the zombie. To become a zombie is a slave's worst nightmare, to be dead and still a slave, an internal field hand.'" And it's just like, whoa.

Keith Casebonne  (00:46:52):

What we watch is a scary movie now. I mean, that's sad. That's a sad-

Maddie Crowley (00:46:57):

It's incredibly sad.

Keith Casebonne  (00:46:59):

... history. And it's dark and it's just... But again, we don't get this context. We don't know this stuff.

Maddie Crowley (00:47:04):

No, we never get this context. And I think that is what the problem is. And again, it's not to say that people can't reclaim that experience or reclaim that word if your descendants of enslaved folks or experience being Black in America, that's not to say that. But as soon as the zombie was seen in American film or literature, it was a white person becoming a zombie to scare somebody, or however. It's always viewed as a violent perpetrator of harm or whatever. They're going after somebody, or World War Z, where all the zombies take over the world. It's like, whoa, whoa, whoa, let's talk about it. Again, there is moments in these conversations where people who hold the identity, whether it's people with disabilities, whether it's people like descendants of enslaved folks or Black folks living in America, that can lead the conversation and decide what's what.

(00:48:15):

But because we live in America and because we have these structures of power and oppression, there isn't a venue to adequately address these problems and assign what people shouldn't do. It's up to the individual to educate themselves to know about these things. And that's why we're having this conversation. But it's just, wow, the fact that... And I do my best to try to learn about things, like, I just learned about this, and this is obviously not commonly known to a lot of people.

(00:48:48):

So anyways, I really wanted to include that. We could continue to talk about the overlap of incarceration and institutionalization and how all of that forms to be a similar way to view ableism and how ableism was constructed from racism, et cetera, et cetera. But that's a whole other conversation that deserves much, much time. Now that we've addressed maybe a specific thing that someone might dress up as a zombie or do zombie makeup or whatever, for Halloween, I think we can probably get into a little bit more about, and close out with some notes about the dos and don'ts and why with people with disabilities in costumes.

Keith Casebonne  (00:49:39):

Yeah, for sure. I think that comes back full circle to the idea that this is a Halloween related episode, and we want to talk about how you can enjoy Halloween and still be respectful-

Maddie Crowley (00:49:53):

Yeah, exactly.

Keith Casebonne  (00:49:54):

... to others. Let's talk about that. When you think of costume ideas that are unsensitive to people with disabilities, what are some of the first things that come to mind for you?

Maddie Crowley (00:50:07):

Just before we hit record, we were looking at the Disability Is Not Scary thread on Twitter, and just one of them was... The meaning behind it was to show that, oh, a referee of a sports game is making bad calls, not seeing what's actually happening. That costume was a referee jersey, a blindfold and a white cane. It's like, none of that had to happen for you... A referee is still a referee, whether they're a good referee or a bad referee. You didn't have to do all that. So that is just a cut and dry first example as to using mobility aids as a prop for Halloween. And this goes back to something I mentioned earlier where it's like, with the carnivals, you can not use that the next day.

(00:50:59):

You can walk away from the fun house mirror to show that you aren't someone with short stature or incredibly tall stature, whatever. You can then not experience that the day after. But the difference is when you use a wheelchair or you use a cane or a walker or whatever it might be, an eye patch, whatever, to depict disability and only experience navigating disability in that way for that one night that you celebrate Halloween, or you dress up as that character. And the issue with that is not that like, listen, professor X could be your favorite character, you don't have to use the wheelchair because that isn't necessary because you are unable to understand what that experience is actually like. You know what I mean?

Keith Casebonne  (00:52:02):

It's temporary. You can stand up from the wheelchair anytime you want, so you're really not experiencing it. You're not experiencing it.

Maddie Crowley (00:52:06):

And as someone who is a part-time mobility user, I'm getting a new scooter soon, yay, but because I use it part-time because I have a chronic illness, so my energy levels and physicality and whatever, changes, honestly, every day, it's like, some days, I'd want to use it to help me out, and some days, I'd feel like I don't need it and I won't use it, and I'll walk around, whatever. This is exactly the point I want to make, is that Halloween, if you use a wheelchair for a day, you're contributing to that idea that... because you are faking the disability. You are quite literally faking it-

Keith Casebonne  (00:52:48):

Yeah, indeed.

Maddie Crowley (00:52:48):

... if you don't need to. That's what a costume is. But especially for part-time chair users or full-time mobility aid users, there's this idea that people with disabilities are faking it or seeking attention or whatever it is, that is actually harmful to disabled people, that actually impacts their day-to-day lives, not in the way that you'll experience the day after Halloween.

(00:53:21):

Sitting with that and also acknowledging any barriers that you face getting around Halloween night, wherever you're going using a wheelchair, somebody experiences that every day, and your one night of experience is no way to understand what disabled people experience to the point that would allow you to do so and allow you to use a chair to do so. I know Annie Segarra, who has tons of content about cool Halloween outfits and accessible outfits, and the ones that coincide with the wheelchair, et cetera, they have a lot of good videos about it on their YouTube. And one of the things that they talk about in this piece with Teen Vogue, they talk about, oh, I wanted to go to a Halloween party, but the place was not even accessible for them to go to the Halloween party, but yet people at the Halloween party were maybe using a wheelchair, or using a cane, and it's like, whoa, whoa, whoa.

(00:54:22):

It's like, the intentionality is not in the room with us right now. You can't be using these things and then not also be calling out like, hey, why isn't this space accessible, at the bare minimum?

Keith Casebonne  (00:54:35):

Yeah, right. That's a wonderful story, wonderful example.

Maddie Crowley (00:54:40):

Yeah. So it's just moments like that where all of these things play on depictions and stereotypes of, again, characters in film and TV shows that probably aren't even played or voiced by disabled people to begin with, which is, again, another conversation.

Keith Casebonne  (00:55:01):

We have some good episodes on that, too, if you want to go back and listen.

Maddie Crowley (00:55:05):

We know. But it's all just rooted in these stereotypes within film that aren't even true to form about what disabled people's lives are really even like.

Keith Casebonne  (00:55:16):

Exactly.

Maddie Crowley (00:55:17):

So when you dress up or wear a mask with facial difference or use a mobility aid and you're not interrogating other things that happen, it's a callback to exactly what you brought up in the beginning, which is we, as a society, have collectively... almost all of us, have collectively understood that black face is not okay, because there has been violence against Black people living in America from literally the creation of this country to literally present day.

Keith Casebonne  (00:55:49):

Present day, yeah.

Maddie Crowley (00:55:51):

So that's exactly the same situation with people with disabilities who have faced different violence in different ways, but because we don't talk about it, because we don't know about it, because disability is still... so disability violence and ableism is still so ingrained in our society to the point that the common person doesn't have the same understanding about not using a wheelchair as they do not using black face. And I'm no way saying that those are the same thing.

Keith Casebonne  (00:56:21):

Of course, of course.

Maddie Crowley (00:56:22):

I'm not conflating the two experiences whatsoever, but I am saying that there should be more awareness around what is appropriate and to ensure that people aren't contributing to those same stereotypes.

Keith Casebonne  (00:56:41):

Yeah.

Maddie Crowley (00:56:41):

Thank you for coming to my TED talk.

Keith Casebonne  (00:56:46):

Oh my gosh. But seriously, that's a perfect way to wrap it up. And I hope, if you've been listening to this and you've enjoyed this episode, that it also made you think, and made you aware of things that you didn't know before. And I'll be totally honest, as the research was done for this, there were two or three things that I learned that I had never known before.

Maddie Crowley (00:57:06):

Same.

Keith Casebonne  (00:57:06):

We went to the zombie example, it's just, neither of us had any clue that was rooted in something, essentially, racist and based on American slavery. So there was a lot we learned, and I hope you guys learned a lot too.

Maddie Crowley (00:57:21):

Thank you so much for listening. And we'll be sharing this podcast on our social media channel. So if you don't follow Disability Rights Florida on social media, please be sure to do so. We're on literally all of the platforms, so you'll be sure to find us wherever you like to be on social media. We're also on all of the podcast platforms, whether you're listening on Apple, Spotify, Google, YouTube, et cetera. And again, just a small plug for the Willowbrook and history of the creation of the National Disability Rights Network, this episode, obviously, is about Halloween in the context of costumes and the history that really sets the foundation for that. But if you're really interested in the history of places like Willowbrook and Cal, just how untold and not talked about disability history is, I really recommend that you all stay tuned to that, because it will help you further understand this conversation more. And it also just is really important history that I think every single person should know, that I'm still learning, that we're still learning. So-

Keith Casebonne  (00:58:37):

Same.

Maddie Crowley (00:58:38):

... whether you subscribe to the podcast or just check in, we'll have that episode out. And if you prefer to read as you're listening, or are deaf or hard of hearing, we have our transcript on our website at disabilityrightsflorida.org/podcast, so you can get it there.

Keith Casebonne  (00:59:00):

Don't forget to subscribe. Keep up with all the episodes that are coming, and also feel free to email any feedback or questions or ideas about this show you have to podcast@disabilityrightsflorida.org.

Maddie Crowley (00:59:13):

And again, this episode is really to give you the info and tools to start making decisions for yourself about how you want to approach these things. We're not telling you X, Y, and Z is the exact way to do it. Obviously, I'm very strong in my views about what I think is appropriate and not appropriate, but I think just starting the conversation from a lens that hasn't been told to the full extent that it should be is a great place to start and a great place to start learning. So we appreciate you listening and tuning in, and we hope you have a very creepy and fun October and a happy Halloween.

Keith Casebonne (00:59:55):

Yes, absolutely. Thanks again for listening.

Announcer (00:59:57):

The You First Podcast is produced by Disability Rights Florida, a not-for-profit corporation working to protect and advance the rights of Floridians with disabilities through advocacy and education. If you or a family member has a disability and feel that your rights have been violated in any way, please contact Disability Rights Florida. You can learn more about the services we provide, explore a vast array of resources on a variety of disability related topics, and complete an online intake on our website at disabilityrightsflorida.org. You can also call us at 1-800-342-0823. Thank you for listening to You First: The Disability Rights Florida Podcast.