Episode 28: Beth Haller
Interview Date | March 31, 2020
JILL: Welcome to the DisTopia podcast, where we look at Disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit.
What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with Disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of Disabled people, the core values of the Disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled Disabled life.
The second component of the My Dearest Friends project is created in partnership with Disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a Disabled community. Designed as an open invitation to the Disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.
As is true for many of you, our desire for this project is to share our experiences as a Disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of Disability necessitates flexibility and creativity, and to validate Disabled voices and perspectives in the midst of the COVID-19 pandemic.
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BETH: My name is Beth Haller. I’m professor of Mass Communication, and we have a new Disability Studies minor in the last few years, Applied Adult Disability Studies at Towson University, which is outside of Baltimore in Maryland. Been there since 1996. And I do research about media and disability, have a book Representing Disability in an Ableist World from 2010. My chronic illness is sometimes disabling, sometimes not. It’s asthma, respiratory allergies. I have some other allergy-related chronic illnesses too. I doubt I have the coronavirus ’cause I’ve been alone. It’s beginning to be pollen season. And so, you know, that was really kind of hitting me hard. I would only cough or sneeze if I was alone in my car. So, I’ve been trying to suppress any sneezes or coughs or anything. And I kind of have coughing asthma, so I don’t wheeze like some people with asthma do. I just start coughing a bunch. And so, it’s been really interesting to be aware of what sounds I’m making and trying not to make them, ’cause it’s really kind of difficult to suppress a cough or sneeze!
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CHRIS: So, Beth, how are things in Maryland?
BETH: Since we’re so tiny, it was kind of slow to start, but then everything kind of hit the fan on Saturday when 66 people in a nursing home got the virus.
BETH: And a 90-year-old from that nursing home has died. I was social distancing. I had to escape from Canada. So, when I got back, it was quite shocking ’cause I’d been out of the U.S. for 10 whole days, [laughing] and the world had changed!
BETH: They were very slow to, or they were slower to get the virus. So, it was interesting to watch the Canadians suddenly from going from no big deal to, oh my god! The Prime Minister’s wife has the virus!
BETH: So, anyway, Maryland didn’t have a ton of cases. We, at Towson University, they sent the students home several days early for our spring break, which was supposed to be the week of March 16th. Then they were dragging their heels about whether we’re fully going online. Actually, I was lucky because I’m teaching my Media and Disability class, and I had already put several weeks. In fact, this week and next week were supposed to be online!
CHRIS: Oh, good!
BETH: ‘Cause I was gonna go to SDS conference in Ohio State. Then I was gonna fly to Texas for Easter weekend. Well, that’s off. But this class only had two in-person lectures left. So, we really lucked out. But anyway, back to Maryland. So, things got really serious. And the governor has been really good. He’s actually a cancer survivor. I don’t know if that’s motivating him, but, you know.
CHRIS: Yeah, yeah.
BETH: I think he’s been really proactive and getting people to stay home. But then last weekend, it was very upsetting ’cause I could hear young people partying at the apartments that were a couple of blocks away. And it was making me very furious. I was getting very angry with people that weren’t social distancing. And I read this column in The New York Times this weekend that helped me a lot because there was a actually Q&A thing. And this guy was talking about this couple whose adult young 20-something son was not social distancing. And they’re like, “What should we do? Why can’t he understand?” And the columnist made a really great point. He said, “Look, we haven’t had to do self-sacrifice since basically World War II. You know, America, especially younger Americans that may not know anything about American history!” [laughs] I know from teaching college-age students that sometimes they don’t. “They don’t get it. They don’t know that this is something that affects everyone. They just think, oh, I’m healthy. You know, it doesn’t matter.” So, anyway, he talked about kind of the behavior being linked to kind of no historical context for what we’re doing.
And even like what was going on in New York City. So, I’m like, what’s going on? Why are people not doing anything in New York? It’s because when you live in New York, your living room is the city. Your kitchen is the city. The only thing use your apartment for is your bedroom. And also, you know, the kind of tough, gritty New Yorkers are used to some kind of crisis like September 11th, where they’re just gonna get on with life! [laughing] No, this is not getting on. This is staying home and being bored and doing nothing. And so, I think that’s really hard for like New Yorkers who are always on the go to deal with.
Our governor in Maryland issued a stay-at-home order yesterday. We were already supposed to be social distancing, and everything had been canceled and stuff. But what was really interesting, one of my Facebook friends said that she read a different article than me and fines up to $5,000 dollars in Maryland if you don’t social distance and stay at home. Whereas in New York, it was only $500 even though they’re going and grabbing people off the trains, if there’s too many people in a subway car. So, it’s just been really interesting to watch. And, you know, kind of my journalist brain, ’cause I was a journalist before I was an academic, has been an interesting brain to deal with because it’s very upsetting. I had to turn off a bunch of notifications because I was getting too much. I couldn’t turn them all off because I didn’t wanna feel ignorant, you know? Like I wanted to know. And the Baltimore Sun or the local TV station notifying me of what’s going on, yeah, it’s upsetting, but I feel like I have to know what’s going on.
And I feel like I’m doing that on my page ’cause I feel like there’s another issue going on with people gathering their news from social media is they’re not using legitimate sources. I’m trying to only post things that are from a legitimate source. And now apparently, the dolphins in the Venice Canal is a hoax! And the drunken elephants in India are a hoax or Singapore, where they were. But the penguins walking through the zoo, that’s not a hoax. [chuckles] And the coyotes coming back to San Francisco was apparently definitely not a hoax.
I just noticed when turn on the TV when I was having my breakfast, that Xfinity, which is the Comcast thing that I have here in Maryland, and so you can speak into the Xfinity remote and just say, “Coronavirus,” and it will click to all the stuff you need to know about the coronavirus. That’s, I thought, really awesome, especially for blind people. And then you could also just speak to the remote, and you can get all kinds of stuff for your kids to watch and educational stuff. So, you know, it’s been really interesting as a media person to start just watching regular TV shows and like, oh, this one’s gonna be canceled. If this was gonna be canceled. This one can’t jump ahead. ‘Cause I mean, all the narrative storylines of all these shows are gonna have to be able to jump ahead by a year and a half. Like, you can’t have a storyline where everyone’s sitting in their house [laughing] staring out the window. That’s not interesting! What’s gonna survive? You know, things like The Walking Dead are definitely going to survive. But I was watching it the other night, and they can’t have their finale because they only do a couple of weeks ahead. So, that really drove it home what the ones that are in production still. So, I think that’s gonna be a rude awakening for the entertainment folks out there that are like, wait, what? [laughs]
JILL: I really appreciate how you have a lot in your head, that’s for sure.
BETH: [laughing] Ah, yeah! And even just like when I’m watching a regular show or an ad, I don’t know how long ahead the ad buys are, but I’m now starting to see ads that have changed to address the coronavirus. Because before I was like, why are those people touching?! Quit touching! [laughing] Quit touching! Don’t hold hands! Or, you know, just like you realize how much intimacy is in TV and film because it’s all human stories. And there’s so many close ups, you know, like that’s how they convey emotion when it’s not in the dialogue. They’re so close, and people are close. And I’m like, it’s gonna be really interesting! Future world of media where people are standing really far apart, screaming across a lawn, “Yes. I love you. Yes, I love you!” [laughs]
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Especially blind people, I’ve seen a couple of articles about the coronavirus, you know, and I saw one from the UK just yesterday where this blind guy got kicked out of the grocery store because they’re like, “Oh, you’re blind. You don’t know where two meters are for distance. So, you can’t come in. You don’t know how.” I mean, this kind of prejudice is now coming from a whole different place because they see blind people as deficient. Late last week, I helped a visually impaired friend. She wanted me to have a bunch of her information in case it was an emergency to get her prescriptions possibly delivered to her house and to see what was going on with Amazon Fresh. Because that’s the other problem is people, especially people who are blind and had already been getting, or people with other disabilities had already been getting a lot of the services that are dropping things at their door. And now, like we put in, you know, a bunch of groceries she needed, and there were no windows to have it delivered.
So, I think things that disabled people have been using, you know, from the gig economy or whatever, is all kind of collapsing too, and that’s affecting disabled people. I mean, Uber and Lyft are not going. I don’t know what’s going on with cabs, but they don’t sound like a good idea right now. So, you know, for certain disabilities, the coronavirus has a whole different impact on just accessing food and accessing what you need to do. But I think it’s impacting people with physical disabilities and people especially who are blind or Deaf, too, because I noticed John Oliver, on his show, he showed I forget what governor or mayor this was. And the guy was trying to push the—I mean he wasn’t touching her—but he was trying to say, “You’re not six feet away” to the sign language interpreter. And I was like, no! You should not be in the shot. The shot should be of the sign language interpreter. But he was a politician who would never think that he shouldn’t be in the shot. And he kept trying to push her, not really, you know, with air push [chuckles] saying that she wasn’t six feet away. But, you know, just a politician who doesn’t realize that he’s cutting off information to the deaf community because he thinks the camera should be on him. And I’m not, you know, it’s just out of ignorance. It’s not that he’s a mean person or anything! Right before that, the person coming up to the podium, like passed this far apart from him, like a half inch away from him. So, you know, they weren’t doing what they were doing in terms of passing each other safely. But it was just shocking to see.
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CHRIS: I wanna go back, Beth, to something you said, and I think it’s really important. And that is that your friend who’s blind, and some of us who are reliant on things like Uber and gig economy and things like that, I wanna dig into that a little bit. How do you respond to that? ‘Cause I tend to be a little frustrated by it. But I’m also like, OK, we’re all in the same boat. But some of us need it more than others, and how should we sort of balance some of those reactions to that?
BETH: Right. Yeah, I mean, I was never a huge fan of the gig economy, [laughs] not because I didn’t think it helped a lot of people that needed work. But, you know, like take Airbnb. A hotel, if I go to a hotel, they have to comply with the ADA. You know, I tend to take cabs still, even though they’re way more expensive. And I know he’s been vetted, you know. They’re an employee of a company. Whereas I don’t know who [laughing] Uber drivers are. Their vehicles aren’t vetted for accessibility.
Actually, back to the food kind of thing, a couple of years ago, I was visiting a friend who lives outside of San Francisco. And she had ordered, I forget. It wasn’t one of the named food delivery sites. So, she just ordered it to see what it was like. And it tasted perfectly fine. But I have food allergies, and none of the stuff was labeled properly. You know, I have asthma and respiratory allergies and food allergies, nothing that’s life threatening. But we couldn’t find anything. So, she was upset that, you know, they just had this like sticky label that I could’ve printed out from my printer that said it had these things in it. So, we called the company, and then they were just clueless. And I’m not saying that it’s what made me sick, but I was very sick that night. But, you know, like just a little thing. People that don’t have food allergies don’t understand how important labeling is. So, you know, just little examples like that where the gig economy, it didn’t have accessibility and accommodation for all kinds of disabilities built in. And so, you know, I can’t say that I’m sad that it’s gonna have to be rethought.
Like I said, my friend, it was so great. She has a couple that helps her. I think the man will mow her lawn, and then the wife comes and helps her with anything she needs: house cleaning or groceries or whatever. And she doesn’t have much money to pay them. But they’re really important to her. You know, this is something she really relies on. And it’s great that they have the delivery, but they couldn’t seem to figure out how to have it set up on the phone for her, which is what she needed. She needed to be able to call that pharmacy and for them to set it up for it to be delivered to her door, except that she has one eye drop that has to be refrigerated. So, she couldn’t set that up ’cause somebody had to go pick it up. But anyway, and even me getting, I got it all set up on the CVS website. But then she decided not to go with the delivery just because we couldn’t tell when it was gonna happen. And it was still kind of confusing even for me that the CVS website wasn’t super clear about the home delivery. But at least now, I have all her information, so if there’s an emergency, I could make them [laughing] take it to her.
You know, it’s much more flexible. So, there have been way good benefits from a lot of things that’ve happened. I think that, you know, what CVS and other pharmacies were doing were trying to be part of the gig economy, that everybody was getting everything else delivered. I mean, now that [laughing] the whole world is getting everything delivered, you know, it’s really impacting people with disabilities who rely on getting things delivered. They’re now at the back of the queue instead of where they were kind of the pioneers of everything being delivered.
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JILL: Yeah, let’s think about the back of the queue and what you have been seeing in terms of social media in the news. Is that reflected in what you’ve been reading, that back of the queue idea?
BETH: I think a little bit at first in the kind of mainstream news media, but now I’m really pleased to see the disability community has really come out saying, look! Look to us. We’re the leaders. We’ve been dealing with this kind of life for a long time of not being able to go anywhere, trying to work from home. Oh, just as an aside, here’s the Baltimore Sun popping up with a notification: three more Maryland deaths! See, that’s what I live with. [chuckles] I’m trying to work on the computer, and I find out about death. [voice shakes] That’s really upsetting. Anyway. So, you’re seeing so much communication from the disability community about what we can learn from the community about staying at home, about kind of life hacks to make life OK when you can’t get out or when things are inaccessible out in the world. So, I think in some of the ways that they were at the front of the queue with using the gig economy and other kinds of newer things like ordering things through websites and things like that, now they’ve been pushed to the back of queue. And now we have to also be afraid about the things, you know, like people not touching the Amazon boxes for a day. They’re telling you, “Oh, keep it out on the porch for a day,” like what? You might live where there’s snow or brutal heat [laughing] or whatever. You know, people just aren’t thinking. They’re just thinking there’s a one solution for everything. And I think the disability community knows that there has to be a zillion solutions for everything. So, you know, I feel like there’s a big leadership role that the Disability community is now taking.
CHRIS: I think that the Disabled sort of media presence has been really encouraging. But what’s missing, Beth, from what you see from that mainstream media presence?
BETH: It’s just kind of, I think, dawned on the mainstream news media. ‘Cause I think they were doing a much better job in the last few years of basically hiring disabled people to write their own op eds and freelance articles, having things from a disability perspective. I think they’re finally getting that with the coronavirus coverage. But I think, you know, I will be very sympathetic to the news media. There’s a lot less of the news media than there was 20 years ago. So, they’re trying to work on a very global story with less people. And then they have an audience that still doesn’t understand kind of what they’re doing, and so doesn’t differentiate between The New York Times and The Washington Post and something else that is just somebody’s website and not even [laughing] a news source. And then, you know, there’s all the political biases that are still out there. I have a Facebook page for my book, Representing Disability in an Ableist World, and so I post a ton of news there, and of course, a lot of coronavirus stuff now. And this was an article from The New York Times about Trump not authorizing the trillion dollars or whatever it was for many more ventilators. And one of the people commenting said, [laughing] “This is fake news!” I’m like, what?!
But, you know, like I was in shock that I could see that. That was just a couple of days ago. That’s what is really scary if people are not believing the news. And I mean, some of the stories we’ve seen of these ministers that are still holding church. You know, one of them in Virginia that was arrested because he had church on Sunday with hundreds of people there. You know, he’s like, “Oh, it’s just like the media hype. They’re sensationalizing it.” So, there’s all this distrust of the media that’s been out there bubbling, and it’s gonna get people killed now because they’re not believing what the media is telling them. And this kind of siloed life that we had up until this point where, you know, people hated the mainstream media and other people thought it was giving them good, accurate information. And those people, a lot of times, [laughing] were not Facebook friends or Twitter followers. And so, there are often these silos that we found out during the election. You know, it’s gonna be really problematic when people aren’t believing this very accurate information.
But I think the local politicians, the governors and mayors and stuff, are doing a darn good job of believing the media. And even the Trump supporters, I’m glad that he’s pulling back some of the, you know, oh, we’re gonna be done by Easter. At least by pushing it to April 30th, that gets him a full month of everybody being stay-at-home. And then hopefully, he’ll push it later if need be. For some people, since they don’t believe in the mainstream media, they’re waiting for President Trump and other entities like National Fox News to tell them that it’s time to now stay at home. So, I can’t gripe about another part of the political spectrum [chuckles] if they’re finally doing the right thing and keeping people safe.
But they actually had a couple of hundred people call the cops on a church in Baltimore this Sunday who was having church against all the Maryland governor’s warnings that you’re supposed to stay at home and not a group of more than 10. The minister was trying to say, “Oh, no. We had hand sanitizer and stuff.” He didn’t understand that it wasn’t about just [laughing] holding hands or whatever, touching the hymnal. It was about how close people. He’s like, “No, it’s our freedom of religion is to have more than 10 people in a church service.” I’m like, no. [chuckles] If you really wanna preach on what your religion says, you should be [chuckling] caring for the people in your church! But, you know, it just shows how people’s minds are still trying to wrap around this very different crisis that is nothing like anything we’ve seen before. I happen to be reading this book about the pandemic of 1918, The Great Influenza by a guy named John Barry. I haven’t finished it yet, but it was on my driving to Canada and back, I was listening to it. And this is not as bad as that, but it was horrific. And a lot of the deaths were caused in that pandemic because of politicians not telling anybody anything. And I didn’t realize until I read this book that the reason it was called the Spanish Flu is because Spain was the only country that was giving accurate information about the flu. And all the other countries were either not covering it at all or putting out lies from governments that, “Oh, it’s OK. Just keep on doing what you’re doing.”
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The National Guard came to Baltimore, and they’re setting up a field hospital in the Baltimore Convention Center. And when I just saw the image of all these horrible cots lined up. And I say horrible because one of my friends saw the same thing, and she lives in Colorado. She’s like, “Oh, my god. I think I’d rather just stay at home than have to try to sleep on one of those.” I mean, like, where’s cot technology? Like it just looked like the same kind of images you saw from 1918 where people just like laying in these rows on these horrible canvas cots. And, you know, the cots of now have a mattress like an inch or two inches thick. And I mean, this one, this field hospital’s only gonna be for people that are recovering, so they don’t have to go back to their home if they’re still contagious. So, it’s not gonna be for anybody that’s very sick. But still, if you’re recovering from a illness, you don’t want to lay on a mattress that’s like two inches thick.
And I was thinking, what are they doing? What, do they have accommodation? Like where’s a cot for somebody who uses a wheelchair that could transfer into something, you know? Where are your Hoyer lifts? Where are your sign language interpreters? Where’s your Braille information? So, I think there’s still that forgetfulness about all the access needs of the disability community, even as they’re in the front lines, I think, on kind of social media and telling the local communities and the national communities what their experiences have been and how we can all get through it. And but then, they’re pushed back to the end of the line for when we’re actually doing something physical, like putting together a field hospital or not thinking about it. Or when a politician is pushing [laughing] the sign language interpreter off the screen. So, I think there’s still a lot of just common sense information about the Disability community that is not getting there.
JILL: What I’m processing this is that the Disability community is on the forefront in being listened to in terms of how to shelter in place, how to live a virtual, you know, maybe not physically connected, but socially, community connected.
JILL: But you’ve said it a few times is that you need accessibility and accommodations built in, that there’s a real need for education and awareness of how to incorporate, right, these needs and an understanding of why these needs are essential. It just seems like maybe the mainstream is gonna take as much from the Disability community as they want, like pick and choose what makes sense because it fits our lives for a new way of living. But how do we then think about this as a Disability community who’s really talking a lot more to say, “No, you need to build these things in?” That’s a bigger systemic transition.
BETH: Right. In terms of education, you know, now that I’m online teaching, our Blackboard technology, they claim, they always just say, “Oh, it’s accessible to blind people! I’m like, Yeah, but blind people come in all different accessibility needs.” And we also have a lot of autistic students because we have a center for adults with autism at Towson. You know, like they have all these programs for adults with autism, and some of them just cannot be done online. The whole point was to get somebody out in the community, you know, involved in the community and getting them desensitized to what some of the different community activities might be. Of course, all that’s off. And there’s not a way to recreate some of these things online. And, you know, a lot of families are relying on those kind of programs so that their loved one or child, adult child has some place to go and has something to do. And there’s been lots of articles about accessibility and accommodation for disabled students. And how is that working online? Is it at all? And I think teachers and professors and everybody that never taught before online is kind of overwhelmed. And then to say suddenly that they have to figure out also how to make this accessible, who’s gonna teach them that?! [laughs] Some of them barely know how to do the regular online teaching, much less making sure that it’s accessible.
And then my understanding for what a lot of kind of specialized education for students with disabilities is, a lot of it is very targeted. So, you know, your needs are different from somebody else. If you have cerebral palsy, you may have a certain specialty of kind of education, accommodation that you need. And then somebody who’s a Deaf student might need something totally different. You know, I don’t know what the income level is of their families, too. Do they have a computer at home that they can have video access? The socio-economic stuff is a whole big umbrella too about what people are/are not able to do in their own homes.
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CHRIS: Is there an opportunity here because of the pandemic to transition to a reality in which we are not only listened to a little bit more or that we can begin to model some of our Disability cultural values, but that, you know, some of the issues that you’re bringing up that, do you think things will be different now that we’re—
BETH: No. [laughs]
BETH: I hope so. [laughs] I’m on the planning committee. Do you know what Lights! Camera! Access! is that Tari Hartman Squire? So, we’re having one in Baltimore in the fall. And so, we had a meeting yesterday, and I said, “Look, we can look at this as a opportunity.” Before, it was gonna be at Loyola College in Baltimore City, and a certain number of students were gonna come. We might have to limit it because parking was an issue, whatever. All other classes would be on. So, it would’ve been like kind of, we would’ve been hemmed in a little bit because it would’ve been in-person. I said, “Maryland is a very tiny state, you know. Why don’t we just make it for the whole state?” And also, there was an article in the Sunday New York Times about how the virus is killing all the jobs for, you know, I mean, people have had all their internships are canceled. You know, I’ve even, one of my coworkers, her niece had her job rescinded. You know, people that’ve already been hired that are graduating seniors, they’ve been told, “Sorry. We don’t know what’s going on. Your job is no longer there.” I said, “But we can put this as a positive.” We have all these Disabled people that are very entrepreneurial. So, I think if we frame it as this is an entrepreneurial event. We’re gonna teach you how to make your own media, and here are the Disabled people making their own media.
And I’ve been saying it to the non-disabled students, too, that you have to—especially with media kind of collapsing in on itself in the last decade or more—that you have to learn how to do everything yourself, because that’s how you’re gonna get hired, is your own blog that you’re doing or your own podcast. You’re gonna find this niche. And Disabled people have been doing that like there’s no tomorrow. It’s awesome. You know, there’s all kinds of podcasts and blogs and social media pages and Twitter chats and Instagram feeds and everything, YouTube channels. So, I said, “We can see this is really a positive for the future.” And, you know, we’re probably gonna get gripes from non-disabled students that, why don’t we get that information, [laughs] that entrepreneurial idea? And we’ve been talking about it for a long time in journalism because of just kind of the collapse of traditional journalism. So, I think, you know, Disabled people have been showing us that path for a long time.
And also, I think finally, some people are getting paid for it. You know, I think of something like Rooted in Rights where, you know, that’s a kind of a subdivision of Disability Rights in Washington State. But it’s also teaching some Disabled people video skill. They have a storyteller program where people with disabilities are able to tell their own stories. And so, I think, you know, it’s all good. And I can’t wait to see some of the stories that are gonna come out of this pandemic from the Disability community. So, I think that’s another kind of component.
BETH: And I think people wrapping their head around the way the world is gonna change, it’s gonna take a whole mind shift, you know, that we’re gonna have the time before the pandemic and the time after the pandemic. And the world has changed completely. We’re never gonna go back to the way it was. And so, if we’re gonna change it, it’s gonna be changed completely, might as well do it right [laughs] this time and make it accessible. Learn from Disabled people. So, I think we can look at this as a major opportunity to remake the world. Yes, people are gonna die, and it’s gonna be horrific. I think we’re all gonna know somebody who died, even if it’s just several iterations away from us. And that’s gonna be horrific. But I think we can take this as a opportunity to make it a better place, all our societies a better place. And we can hold people accountable if they didn’t do it properly. I hope those ministers that were endangering their people will never be ministers again! Those churches, hopefully, the building will be taken over by somebody who actually cares for their congregation.
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And one last thing. This is kind of a personal note that I’ve been thinking about everything since everything got really bad, and I’ve been dealing with both my parents’ death in the last three years. So, my mom died at the end of September last year. She was in a memory care facility ’cause she had some fairly light dementia. And so, she’d gotten two septic infections in the course of the weeks that she was in the hospital, and then when I had her put into in-patient hospice. They really made her more comfortable than the hospital, and we’d had all kinds of problems with people in the hospital just wanting to throw her away because they saw she was, you know, close to death. But I hadn’t approved of them [chuckles] throwing her away. So, it was really upsetting.
The place where she was living, the memory care facility, was fantastic until June of 2019. It was very obvious to me that it came down from corporate that they were to make more money. So, suddenly, at this wonderful place, the best memory care facility in Ft. Worth, Texas, was suddenly turned to crap. And they took all the nursing staff and put them on 12-hour shifts, so suddenly, there was no consistency. These are people with dementia and Alzheimer’s, and it just kind of all went to crap. She saw how they did not know how to work with people with dementia and Alzheimer’s. So, they’re treating them like babies. But I was glad she was gone when all this started because I was like, if they gave her two infections, she would also have gotten this, and it would have been a nightmare. I couldn’t have visited her. I’m 1,100 miles away from her. She didn’t have a phone in her room. It would’ve been so traumatic.
You know, the other thing is, with her nursing skills, she would not have stayed in her room. She would’ve went out there to help. She would sit with people, you know, if they needed to be sat with before they died or whatever. She would hold people’s hand. She would watch people to make sure they weren’t getting up out of their wheelchair. She was great. Sad she’s gone. But I’m glad she doesn’t have to deal with getting the virus, ’cause I kind of know she would have. ‘Cause it’s now sweeping through all these facilities of all kinds now.
So, a friend of mine who’s a disability rights attorney and runs the Disability Rights Center in North Carolina, so she posted something on her Facebook page a couple of weeks ago about this Tennessee company that owned the nursing home where the first coronavirus cases were in Washington State. So, I’m reading this article. Second paragraph is the name of the company. It owns the memory care facility where my mom was! So, I wrote Virginia Knowlton Marcus, is the disability rights attorney in North Carolina. And she sent me the article about the billionaire who owns this company that has nursing homes in 28 states that, I’m sure are gonna be responsible for a lot of the deaths in this pandemic. So, you know, that’s the other thing is that these institutional spaces, I hope we can figure out a way not to have. I mean, I know that some of these kind of facilities have to exist because some people don’t have families, you know. Some people don’t have anything other than a facility to make stuff work. But imagine [laughs] a social distancing kind of facility where everybody has their own space. You know, everybody has their own studio apartment and gets all the assistance they need. I mean, there’s plenty of space in Texas. [laughing] They could do lots of things there instead of crowding people together. But, you know, the nursing home lobby has so much power in this country. These are places where hundreds of people are gonna die because of this institutional structure. So, I’m hoping that this blows apart the nursing home industry! How can we reconfigure this so that people are not isolated and not put in danger in these kinds of ways, you know?
CHRIS: And sorta, how do you fight for the transformation of culture that you’re talking about? You know, that’s been DisArt’s hope from the beginning. And now it just seems like there’s just a tad bit more urgency to that.
CHRIS: And so, we so appreciate you spending some time with us.
BETH: Oh, can I tell you one last thing?
BETH: I sound fine right now, but about a week ago I was pretty spiraling. All this news was hitting me, and I’d wake up the middle of the night and not be able to get back to sleep ’cause I was just like all this stuff was running through my head, and I was catastrophizing like I have wont to do. And I was like, what can I do to get rid of that? And I felt like doing something for others would be really helpful. So, I just started thinking about Helen Keller and the Helen Keller book that I edited of all her writings and stuff. And so, I just kind of like shot that little video and threw it out there that if any kids want a lesson about Helen Keller. And it’s been really fun. I’ve already talked to a kid last Friday that’s a local kid that has like six books about Helen Keller! I always tease her. She could be my research assistant. You know, and kids just wanna talk, and it gives them parents a break. I talked to my friends in Australia last night, this morning for them, and their kids are quite little. So, I sent them a picture of Auslan, the British, they use the British version of sign language in Australia. And then I had a picture of our finger spelling, American Sign Language. And so, they learned how to finger, to spell their name. And we looked at what the difference was. And she had on her Braille t-shirt, so we talked about Braille and how it’s the same everywhere in the world. And, you know, it was just great. It just it helps me a lot to be doing something. And it’s just fun to talk a little kids. So, it makes me happy to talk to kids, and then, you know, they’re getting a little bit of knowledge. That’s been really helpful to me. And I’d really never even thought about how I could do something that might help somebody else from my laptop here in my house, you know.
And also being that I’m a stay-at-home with nobody else in my house. I mean, sometimes I’ll go out into the yard and talk to my neighbors. We’ll talk to each other in the yard [laughing] and stuff. But, you know, it’s still like I don’t have anybody to talk to except Alexa here, so! [laughs]
CHRIS: I think the idea that you’re taking that moment not only to serve people, but to also help them think about the variety of experiences that disability brings. I mean, that’s just, that’s awesome.
BETH: But the other thing I was thinking about it, too. I’m trying to find if Helen Keller wrote anything about, because she was 38 during the 1918 pandemic. And so, I’m gonna try to dig into some of her writing, ’cause she wrote 12 books. And one of them was called Optimism. So, I actually think she has a lot to say about this time even if it’s not about this time because she was such a optimistic person and like, look on the bright side. But she would always sneak in her own agenda about you need to be caring about what happens to Disabled people. You need to be caring about what happens to poor people. You know, she helped found the ACLU.
JILL: Beth, I’ve just really enjoyed that you’ve shared all of your different perspectives, and you’re obviously a caring, passionate person.
BETH: [chuckles] Try to be!
JILL: And I— Well, it comes through, and it’s clear that you care about people and connections and that you’re doing everything you can to keep those connections, even though physically, you’re distancing.
CHRIS: Yeah, absolutely.
JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.
Beth Haller: “Speaker Joy” by Blue Dot Sessions. (Source: freemusicarchive.org. Licensed under a Attribution-NonCommercial License.)