Navigating Life as we Know It

9. Ableism, The Media, & You with Prof. Beth Haller!

October 21, 2020 Envision Media Group Season 1 Episode 9
Navigating Life as we Know It
9. Ableism, The Media, & You with Prof. Beth Haller!
Chapters
2:15
Ableism & Inspiration Porn
20:50
Changing Landscape of Disability News
37:48
Understanding Media Models and Ableism
53:44
Representation of Disability in Media
Navigating Life as we Know It
9. Ableism, The Media, & You with Prof. Beth Haller!
Oct 21, 2020 Season 1 Episode 9
Envision Media Group

When discussing Ableism, Media, and how they interact, there are few people as qualified Dr. Beth Haller, so of course we went and got ahold of her and from that comes an episode in a slightly different format than our usual style


Support the show (https://www.patreon.com/NLAWKI)

Show Notes Transcript Chapter Markers

When discussing Ableism, Media, and how they interact, there are few people as qualified Dr. Beth Haller, so of course we went and got ahold of her and from that comes an episode in a slightly different format than our usual style


Support the show (https://www.patreon.com/NLAWKI)

Steve:

Hi, this is Steve. When you put the letters is m after a word you modify the word to represent a distinctive doctrine, cause or a theory. Often the word comes to represent an oppressive and especially discriminatory attitude or belief. For example, take the word age at ism, and you have ageism, which is defined as prejudice or discrimination on the grounds of a person's age. you achieve similar results when you add ism to the word race. Racism exists in culture throughout the world as well as in the USA and manifests itself in society in many different ways explicitly and implicitly, there is structural racism, institutional racism, and racism practiced on the level of the individual. When I first heard the word ableism, I thought it was something admirable After all, the root word is evil, and it sounds positive. In fact, the word ableism is anything but positive and ableism follows the same path as racism and that it has structural, institutional and individual. Today we visit with Dr. Beth Heller of Towson University in Towson, Maryland. Due to its length and diversity of topics our podcast is divided into four segments. The first segment defines the term as ableism, and a specific type of ableism called inspiration porn. The second section delves into chapter one of Dr. Heller's book representing disability and enable this world where we discuss the changing landscape of disability news section three, it looks at media models that have been developed to identify how disability is represented to society, and how some of those models highlight the structural and institutional nature of ableism. At our final section, we speak with Dr. Beth Heller about the changes taking place in the representation of disability and movies, television and streaming platform. I hope you enjoy this longer than normal episode and gain some insights that will help you navigate life as we know it. Now on to our interview with Dr. Beth Heller. Today, our guest is Dr. Beth Heller, Professor of journalism in the mass communication and Communication Studies Department at Towson University in Maryland. Dr. Heller has conducted research on the topic of media images of people with disabilities, and disability issues since 1990. Her research has been published in several academic publications and as book chapters. She is also the former co editor of disability studies quarterly, the Society for Disability Studies academic journal, Dr. Heller holds a PhD in mass media and communications from Temple University in Philadelphia. She is also the author of representing disability and an ablest world essays on mass media. Welcome, Dr. Beth Heller, and you have indicated I can call you Beth, thank you very much for the familiarity. When I first heard the term ableism I thought it was something admirable to be an herbalist, and then I found out that it was just about the opposite. How would you explain the term ableism to our listeners?

Unknown:

Yeah, it's basically discrimination and prejudice against disabled people and post some more to racism. It's embedded in our society, and both overt and covert ways. And it kind of colors everything that we're doing in our society, but people don't know it exists, they're still so kind of stuck in like a medical model that they don't see disability as a identity group or community or political group. And they don't believe that this could exist, but it does exist and people are openly ablest when they're discriminating against people with disabilities, or covertly they have structures like, you know, they didn't want to spend the extra money to put a wheelchair ramp in or they didn't want to spend the extra money to make their website accessible. Even though it wasn't probably extra money to make their website accessible. It wasn't that expensive to put

Steve:

a wheelchair ramp in. And that's kind of the ableism that's out there in our society at all times. Why would you say that it's important for families of young children or teenagers or even adult children with disabilities to be aware of ableism

Unknown:

because it's what your family member is going to experience in their doctor's office in the teachers lounge in the gas station attendant, you know, mind, they don't know that they're being able to but your loved one is going to have to deal with that forever. And it gives you a way to explain it to them and also a way to kind of identify what's been going on. I had a student A few years ago, who ran was a manager of a group home for people with intellectual disabilities. And she told a story about having a older woman was Intellectual disabilities in her group home. And they tried to get the doctor who was, I guess, would come to the group home if they needed one. To understand that he needed to come something was wrong going on medically with this woman, this older woman who would have actual disability at the group home, and he was like, Oh, no, it's just her disability, you guys know where to well, or whatever, like, finally got into come and check on her. It turns out, she had a stroke. And then after that, they had medical stuff that she had to be doing, taking her to physical therapy and to doctor's appointments, and then they would go to these appointments. And now that she is the wheelchair, they wouldn't be able to get in because it was inaccessible. And you know, she came to class. And the reason she told that story, she said, I have a word for what was happening to her. And it was ableism. And I thought that was the best example ever of somebody who had never heard the word ableism before. This is a loving, caring person who was running this group home that really cared about her residents and want to make sure that they were safe. And you know, she was trying to advocate for this woman and you know, was hitting a brick wall. And now she knows what she was hitting the doctor was being able to the structures of society once the woman was using a wheelchair was able to and you know, people are just defining everything that was happening to this woman to her disability when she was having something that a lot of older people have, which was a stroke. And that is a perfect example of how ableism and kind of embedded into the ether of our society and as affecting people like seven a non disabled woman, somebody who cared about or would have rushed her to the ER and now there's medication where they can actually stop a stroke if you get somebody because the hospital fast enough, and because she has a disability that wasn't available to her, I think the other kind of ablest issue, and it has nothing to do with the student group will manager but you know, I was thinking what happens if she tried to call an ambulance, she wouldn't want the resident go into the hospital alone. There's other residents of the group home, I don't know how many staff were there, but I don't, I think you'd think long and hard before you call an ambulance, you don't have enough people to have somebody ride to the hospital with the person going in the ambulance, which has been necessary, especially if somebody might be nonverbal and have intellectual disability, and just for safety sake, so you could advocate for them. And other enough people left behind to make sure everybody in the group home is still safe with enough staff around that is a whole other structure, you know, like are these groups that take care of people with disability, have all the contingencies taken care of like, what if there's an emergency, if there's only two staff in the group home, you know, what can you do? How do you call an ambulance,

Steve:

I have a 31 year old son with disabilities is not verbal, and he's got autism, and he has cerebral palsy, he uses a wheelchair, he happens to love wolves. And he has got this one shirt that has graphic on the front where you can see the picture. And you have to kind of find out where the different faces are. But there's 20 wolves represented on the shirt. And at first you don't see the walls, you see a mountain. But then when you actually see the wolves, you can't unsee them, it becomes much more obvious in what you just described, I think for people to become aware of ableism they're able to spot it and you're able not only to explain that to your son or daughter, but you're able to help them cope with that type of mentality later on in life. Because it's going to be around, we cannot get rid of it. But we can learn to work around it.

Unknown:

And I'll call people out on that too. Yes, absolutely. Fabulous people and there was a study done not that long ago of doctors offices and Boston, I think it was like 70% of them were inaccessible. 70% about that a lot of people with disabilities don't get medical care that they need, like even a flu shot. Because why go someplace where somebody's not going to see you they're just gonna see your disability and not be what you need not have a exam table that's going to be accessible to you. If you're deaf not going to have a sign language interpreter. This is going to be a situation where people will go untreated. I mean, there's been many instances of men and women with disabilities not getting treatment for things because they don't want to go to this inaccessible able or safe, which is a lot of doctors offices are having our advocate call out what's going on. And you know, making any a lot of people who are able to might change if they knew they were able to if you told them this is unacceptable. You know what you're doing? There are jerks out there, but I think that some people would want to change. Oh, wow, I never thought of that. We can figure out I'll rent a space and we'll have clinics that are in an accessible building or something, you know, they will figure out a way to work with people. You know, a lot of times you're in like historic. I mean, my student was in New York City. So that was the reason for some of the inaccessibility you're dealing with older buildings. Some of what built before elevators existed that can be a problem and for the rest are very high. So people are looking for things that are Lower rents, and so they get lower rent places that are inaccessible, but they can't afford the building that has the good elevator. Not that that's okay. But I think ableism needs to be pointed out to everybody, including abled. So they're in violation of Americans Disabilities Act, somebody can just call the Department of Justice or whatever federal agency is over that area of the ADA. And they'll have to fix they're able to, because their, their violation is actually a violation of the law. You know, there's other things that are grandfathered in, or they're a small business or whatever, like, you know, Ada doesn't cover businesses that are in 12. employees. So that would be most doctors offices probably don't have 12 employees. There's a, you know, like, you're saying, there's a diplomatic way to point this out. And I think, you know, now we have a lot more awareness of disability rights issues, because of, I think social media and the internet, you know, I think people do want to

Steve:

do better, I hope, because in your book, you're talking about the business opportunities that are lost because of ableism. And it actually makes sense, a good business decision is to create a better environment, whether it's a physical environment, or an emotional environment for people to be able to interact and become a customer.

Unknown:

So I say people with disabilities have the same color money as everybody else. Exactly. Exactly the same as everyone else. So people are like, Oh, well, they all live in poverty, they don't have any money, but they have loved ones and family. And people do have jobs, and everybody needs, you know, breakfast cereal, or whatever. You know, shoes are stuff that the whole world just can't get along without. And so they buy that stuff with money. And it's the same money. Everybody

Steve:

else. That's 20% of our economy.

Unknown:

Yeah, thinking about 54 million. And then the legal definition under the ADA,

Steve:

one of the term I want you to define here that came up in a previous conversation, you and I had had inspiration porn, which does get your attention, but could you describe what inspiration porn means.

Unknown:

So these are the kind of care quote, uplifting stories that non disabled people think are so special, like the church, ladies. You know, there's like a kid with down syndrome, running a fake touchdown, a meme of a little girl painting with a paintbrush between her lips, because she doesn't have arms or whatever. And these like phrases, your excuses, invalid, or whatever. And it's fairly young, the person who kind of coined this in her TED talk, you know, it's basically a way for non disabled people to feel better about themselves or objectifying a disabled person thinking that, Oh, isn't that special with their like getting on with their life, even though it's such a tragedy, so I can't complain about my life, when in fact, people with disabilities are just as happy as everyone else. In fact, I think happiness studies has shown there sometimes happier, non disabled people, because most people with disabilities have a lot of resilience. They've been through the wringer and come out the other side, you know, they've had to deal with ableism every single day in their life, people with disabilities have quite a good sense of humor, because they see the absurdity of the horrible ablest world we live in, and that they're having to try to swim against the grain of this ableism. Yeah, there are reasons that people should be lauded, but they shouldn't be put up on a pedestal just from getting up and going to work that day. Because why shouldn't they, you know, that's what they want to do. But we'll sing this silly young talks about in her TED talk is that she was doing like student teaching. And so she was giving a lecture in the class, and one of the kids raised his hands and he's like, um, why don't we go into the big hall so you can talk like you're supposed to? And she's like, What are you talking about? Like, well, when disabled people come here, it's always in the big hall. And they tell us the inspirational story. And you know, her TED talk is about that problem of here's a high school kid that believes that the only use of disabled people is to be sitting in front of him, telling him something inspiring so he can feel better, not about disabled people, but about himself. They're using disabled people to be motivated in their own life, backside of it is that they're pitying disabled people, and they feel like their lives are tragedy because they think they're worthless. You know, when you put it in those terms, it's really very negative. But people like oh, no, it's okay. It's nice to see that kid with down syndrome doing that or that person in a wheelchair doing, you know, sports event or whatever, I'm like, why shouldn't they, you know, maybe they want to be a Paralympian someday. Like, it is not a big deal, but to them, they just feel it makes them feel good, but basically what they're doing and that's why she called inspiration for their objectifying people with disabilities for their own purposes to feel better about themselves, just like porn objectifies. Typically women. The average person like what did you see in an airport terminal? Oh, good for you. Taking a wheeling luggage to the terminal waiting. Like no people gonna look at you like punch Being so ridiculous. It's also kind of an adjunct to it, it's kind of giving unwanted help. I had two students when I was teaching in New York that were both blind, and they were like, you know, knew each other. So they were crossing the crosswalk crossing a street in New York City several years back. And they both lived in New York a long time and knew how to get around this guy, like came up to them. And it's, like, insisted on grabbing their arms and helping them across. And they're like, No, no, it's okay. You know, like, we know where we're going. And he's like, still trying to push them and pull them and do his what he thought was helping, probably just had to kind of, like, get loud with them and say, you know, we're okay, we don't need your help. So then he turned on them and got really furious, like, start screaming at them. They're the worst blind people ever. And, you know, we were all laughing in class when we heard this story, because they're like, we should, you should get t shirts. They were the worst people ever, you know, you can see what's in that guy's head. And it's a little bit related to inspiration for he wanted to feel good about himself for the rest of the day, because he helped me for political blind people right across the street, you know, and I think he was older than them, they were probably in their, like, mid 20s at the time. And you know, I don't know how he was, but he was probably older than les ruin his day by not letting him feel good. But he has helped blind people across the street really is all about it's a very selfish kind of thing is all about making yourself feel good. You know.

Steve:

We talked about definitions in this first part ableism, and inspiration porn. ableism was something I didn't quite understand. What did you ever hear the term ableism before? And what is your reaction to what she had to say about that?

Kerry Johnson:

Oh, you introduced me to that word. And like you when I first heard it, I thought, Oh, that's a good thing, right? Yeah, I want somebody who is able to help my child, when in reality, it's not one of the things I like about learning these kind of terms is I am very much like Star Trek, and that I go where no one has gone before in my family, I don't have that close connection with anybody in my immediate family, who has grown up or raise a child with a disability. So I'm the forerunner in this. And so sometimes I'm struggling with an issue or a situation. And I don't know what the terminology is for it. And when I learned the word, it's so wonderful to be able to say, that's the only one, there's actually a word for this. And learning the word then helps the definition of it become more obvious. It helps

Steve:

you attune to what it is, like I said, with Liam and his wolf shirt, if you see something, you know, you can identify that. And you can know what it is, I love the fact that she calls people out on it. Because if they're not aware, it doesn't mean you're scolding them necessarily, you start out by saying this is not very easy to get in or manipulate with a wheelchair, or this is this could be made easier if you were able to do this other people with wheelchairs could then access it. Also, it's important to do it that way. And if you have to take it to the next level, but it's it's good to start off with a suggestion.

Kerry Johnson:

Absolutely. And oftentimes out again, I use my family will be invited to go to a celebration or an event. And I have to ask the questions.

Steve:

And I know we have to haul upstairs and stuff. And nobody thought about that. Even family. They don't even think about the fact that Oh, yeah, well, there are some steps. Well, you take 140 150 pound kid in a wheelchair, and you got to hold them up backwards. It's not that easy. No, no. And you know, we're not spring chickens

Kerry Johnson:

anymore. So even when I was not that much fun for me, or him, you know, so and then that gets me over to you know, we also want to work really hard at keeping him safe. Yeah, you know, that's, that's another piece of all of this. You know, I think about the story she said about that calling the ambulance and is there something in place for if you have to call an ambulance? How do you go about that? And it's like Tang, and think of that ahead of time. I'm gonna have to put down my list

Unknown:

and then write that down

Steve:

so that I don't forget it. What is your emergency plans?

Kerry Johnson:

What are the emergency plans? How do you do this if you have to call an emergency because you can't just send my non verbal kid off to the hospital, especially when he has issues with hospital people,

Steve:

inspiration porn, I have to admit, your heart warms and you see that kid running the fake touchdown, but it really does not necessarily benefit that individual as much as it does the people watching to feel good about it. We're like, man trying to help the two blind young ladies across the street, and they knew they could take care of themselves.

Kerry Johnson:

Right? And it's funny because sometimes I'm very uncomfortable. When somebody says, Oh, look at this heartwarming story about little Johnny. He has Down syndrome and look at what the community did to come together. And it's like, I don't know if I should feel happy or really, really sad. And

Steve:

you know what's amazing? It comes a little bit later in the interview but she's says that people have Down syndrome and particularly have a very high degree of emotional intelligence because they've been watching. They know who the people are that treat them fairly. They know what is honest. And you know what is dishonest. And so this inspiration porn stuff, if the kids running the fake touchdown, he might know that it's a fake touchdown, he probably understands that. And he might think it's nice that people are deferring to him. But it's like, I would like to really earn something, it doesn't have to be a touchdown, it could be something else, it could be what he contributes to the team. Well, now we get into part two, or which actually chapter one of her book, which is the changing landscape of disability news, let's get back and join the conversation with Beth Heller. Chapter one of your book is about the changing landscape of disability news. And I love one quote you have in there, and I just these numbers are actually 11 years old. So they're even more at this point. There are 1.7 3 billion with a B internet users worldwide as of September 2009, there are 1.4 billion email users worldwide. And on average, we collectively send 240 7 billion emails per day, then you say, unfortunately, 200 billion of those are spam. I don't know if that's accurate, or you're just

Unknown:

tongue in cheek, gotten lesser, but people aren't using email much now. They're posting right media and texting and messaging. And

Steve:

it's amazing what happened in 11 years. So a lot has changed in terms of the landscape for disability news, how have the changes and the way Americans resource, their news reflected or affected? reporting on disability issues?

Unknown:

Yeah, I think it's actually been a benefit to the disability community because the car was a vacuum created when traditional journalism started going away more. I think the statistic that I heard back in the day was around the recession of 2001, a lot, especially the internet became much more of a player. And there's about a third less journalists in the United States as there was in 2001. So that's like, over 20,000 people that practice journalism, that traditional, you know, they went to school, they know how to interview people and look at government records, that people don't even understand what real journalism is. So it kind of like all the people left newsprint news and TV stations and radio journalism, you know, like NPR stuff, the only thing left some public radio stuff, but it for a while, it was kind of a nightmare, like, Where are people gonna get their news. And then people were so reliant, they all moved over to the internet, where they air quote, got it free, they didn't understand that when they were paying their 25 cents for a print newspaper that was barely covering anything, that what the newspaper was really making their money from was the advertising and their eyeballs on those advertisements. So the whole business model of journalism fell apart. And they're still figuring out how to make money in online publications. But what it did happen is what social media came in, it really gave a platform that you didn't have to know anything about computers. And that's like, kind of like dawned on me when things like Facebook came along with it here was a platform that you didn't I mean, even like blogging, you had to know enough to be able to use blogging software, even if it was free to start to know a little bit about like how to design something even It was like a template that you were used to have to select the template and figure out how to upload a picture and text and things like that. Whereas with Facebook, all you have to know how to do is copy and paste. And a lot more people knew how to do that once Facebook came around, and there was a fixed kind of structure to it that you couldn't touch. And you didn't have to know anything about how anything works, all you had to know is how to dump something into this little rectangle space where it says post that I think benefitted lots of people that were not that computer savvy. I mean, you know, it's hard for people this generation to understand, but computers are really scary. And lots of people left their jobs if they were close to retirement because things became computerized. And that was a whole like going to college again suddenly in your 60s. And a lot of people didn't transition well. And the younger generation doesn't even know what it was like for so they don't understand what's up with these older people. But what I think happened is that the craziest kind of vacuum of information, the disability community had never been covered very well or at all. Then when all these journalists go away, then there's even less people to cover the disability community. But then suddenly, here's a platform that anybody can be on. You don't have to leave your house. You don't have to know anything. And you can actually kind of hide your disability initially if you want to, and people don't know potentially that you're disabled like get to know you without having disability in the mix. And so The kind of ableism we were talking about may not be there. And then so they get to know you through a social media platform. And like what you're posting and like what you're talking about. And then maybe like six months or a year later, they find out, oh, yeah, cerebral palsy, or, oh, you're a deaf person. I mean, the deaf community really started using Twitter when it first came out, because this is a way to have a conversation with the whole world in text alone. And you didn't have to have a telecommunications device for the deaf or have their phone number, even to text them. You know, I think it really became a platform and the disability rights community saw through blogging and through social media, that they can really leverage the 54 million people with huge groups of people and talk about the issues that were important to them, and get that in front of the eyes of all these readers. You know, when I think of like, I was a print journalist back in the 80s. And I look at some of my Facebook pages and Twitter feed, sometimes just for the fun of it, I kind of count up. So my book has a Facebook page. So that's like, I think about 7000 people have liked that my personal Facebook page, I think I have like, I don't know, two or 3000 friends that have a Twitter following. I don't know how many people over 1000 people follow me maybe 1500 or something. He doesn't think that like that much in terms of, you know, like a small town newspaper, or small city newspaper circulation figures, but the power of social media is not in that one time thing. It's about five posts something in 158 people repost it, or share it, then that 7000 people who liked my page can very quickly triple, quadruple, though tenfold and then suddenly something is going viral. And I don't usually have things going viral with the disability community has been very savvy, especially disability rights activists, have been very savvy about figuring out ways to make things go viral. And one disability activist in New York that I quoted in my book said he felt like social media was like Gutenberg and bidding the printing press, because it revolutionized the way people are communicating. And so here's a group that was isolated and not being covered, to suddenly have a platform to tell not just America, but the whole world. What's going on. I mean, there was an incident, I think it would be for social media. In New Zealand, where a member of their Parliament or Congress, I forget what the government structure is in New Zealand was elected and she happened to be a deaf woman, and the became part of the news. And now the internet exists. And you know, we can easily read the news from New Zealand, on our computers, the New Zealand government was like, Oh, she has a paper on sign language interpreter, even though she is a member of our federal government, the whole world shouted down New Zealand, which is a very nice country that usually does very nice things and not known for being evil. But it only took three weeks before the New Zealand government said, okay, we hear you world, we're going to pay for the fine language interpreter for her while she's member of federally elected government. So you know, I think that's very powerful. I may have contacts all over the world from different disability rights groups, and I worked with a disability organization in Serbia a few years ago. And, you know, they look to I mean, they don't even have an airport in the city where the disability organization is, so you can't even fly there. I mean, they're still recovering from the Balkan Wars in that part of the world, but they can get on social media. And if they read English, they can get information about what's going on. And all these countries that do have disability rights, Say what you will about America, we do have some of the best disability rights laws in the world. And even though they don't get enforced, as well as we would like, at least they exist as laws. So they actually that particular person from Serbia, she was very impressed. He came over in 2013. And we did some projects together. And the State Department or sponsor of this program, had a big screening for all the participants of the film that came out in 2012, called lives worth living. And it's a documentary about the disability rights movement in America. She was so impressed when she went back to Serbia, she was able to contact the US embassy and get a grant to show the film in Serbia and get it translated. She translated the whole thing into Serbian. And we had a big screening of this Disability Rights documentary in this she said the reason they wanted to do that was so that people with disabilities in Serbia see that there was hope, like, here's what they did. A bunch of people with disabilities got laws change in their country. I mean, they didn't even have attendance services. This friend of mine is the one who pioneered attendant services. She has cerebral palsy as a wheelchair user, when I think 2004 when she was an undergrad, her mom had been giving her attendant care and her mom got sick, so she was gonna have to drop out of college. If she couldn't figure out a way to have somebody help her get ready to go in the day and pulper with just things that she needed as a wheelchair user, so she went to a bunch of her friends in college and said, if we got an apartment together probably rotate you guys if you would work as my attendant, so they figured out and so they kind of like she pioneered attendant services. In her college years, it became more formalized where you could actually hire people and get people trained, but and she was practically in tears. We took a tour of Gallaudet University's University for deaf people when she was here, because I live near DC. And she was like hallowed ground for her because she remembers even though she's younger than me, she remembers the Deaf President Now move but and that really was kind of a call heard round the world when Deaf college students took over their university for deaf people, because I said, we're not going to have hearing people telling us what to do. We need somebody from our community running our college, and they had a perfectly excellent candidate that they rejected in favor of a hearing person. So you know, they shut down the university for six days and got some international coverage, especially since Gallaudet's in DC. So all the major news media were there in 1988. And so you know, they got actual traditional old school media coverage. And you know, around the world, people saw what deaf people could do. And they always talk about, it's not a coincidence that that happened in 98. And then two years later, the American Disabilities Act passed suddenly the disability community, the Deaf culture movement, everybody was on the same page that we have to have a federal law that protects everybody. And what lives worth living the documentary talks about is that yes, there were blindness organizations, there were deaf organizations, there are organizations for wheelchair users. We're an organization for disabled veterans that hadn't really come together as a cohesive movement until kind of the 70s and then into the 80s. And there was an earlier version of that they tried to get past of Ada in the late 80s. And then, you know, 1990, it finally all coalesced. And they were able to get Congress to understand what they needed and able to get the law through. There actually is a book that's coming out next week about the full girl who was at a Capitol, US Capitol crawl. And all these people got out of their wheelchairs and crawled up the steps of the Capitol trying to dramatize to the world and to the especially the Congress that Yeah, you're inconvenience for a few hours while people are crawling up this app worried convenience all of our lives because the wall is not accessible to us. And so there's a little girl that got a lot of media coverage, she was about eight or so has cerebral palsy, and she likes green to do the camera climb. As long as it takes me if it takes me all night, I'm doing it. You know, it's just like, a little headband on here looks like a little like blond headed warrior princess. Like, I always thought that there should be a children's book about Jennifer keel, and this little girl who's now an adult, and now it's coming out on March 10 2020. I think things have changed enough. And when I posted on my Facebook page yesterday, one of my former students, she has like a one year old baby. And she's like, this is awesome. I'm getting that book for my son, you know, and also like non disabled people understanding Yeah, it's great for your non disabled kids to have like children's book about disability rights. And my friend, Xhosa back to the autistic advocate, you know, he was like, This is fantastic. We have a lot of children's books about how wonderful people like Helen Keller, you know, they're so inspiring. This is about a kid who is part of a disability rights movement was more about the larger movement, which is a great message for kids to read about to back to our conversation about social media, I think that is an Alternative Press. Now,

Steve:

it's interesting that social media received a lot of criticism, it's really good to hear the positive side of what it's done

Unknown:

is bad bullying, and you know, like lots of bad facts and Russian hacking and all kinds of horrible things. But I think from the disability community, you're getting a real positive because they're also able to tell their own stories without any kind of filter or middlemen. You know, before when they did get coverage, they had to rely on the journalists to get it right. And last time, they didn't did I'm a former journalist, and I'm sure I got it wrong, as well. Now they can tell their own stories. And because that space is opened up in kind of traditional legacy media, a lot more people with disabilities are writing for the media is not just posting In fact, there's a book that came out last year called about up and it's this weekly columns at the New York Times started that was all columns, from people with disabilities. And the first one who wrote a column was RoseMarie garland Thompson, who's a big disability studies scholar and English professor. And so after she saw the kind of quality that was happening every week, and then you know, they had more than they could actually publish and even though it was supposed to be like a year long thing, they They'll publish when they have somebody submits a, you know, guest column, who's the person with a disability. So they're still publishing them. But anyway, she went to the New York Times and said, You should compile these into a book, this is something that people would want to read. And so the book came out of the columns from the New York Times to have all these disabled people telling their own stories. And you know, a lot more memoirs are coming out a lot of like, we're just talking about Forbes magazine has a very vibrant online site that has a dedicated section for disability related stories, and they publish them almost weekly Teen Vogue, Who would have ever thought Teen Vogue would be kind of the best place you can find some really good writing about disability by disabled riders, and a lot more other publications that are online are fine with having a disabled person who writes the story as opposed to sending you know another Freelancer because there's a lot of freelancers with disabilities out there now, and people that actually have the same journalism school training as any other journalists.

Steve:

In this section of our interview, we talked about the changing landscape of disability news. And before the internet, before things began to change in terms of reporting, people with disabilities were at the mercy of journalists telling their story, they maybe had some other print media to be able to communicate with each other, but they didn't have any way to actually have their voice to the larger world.

Kerry Johnson:

And the journalists were interpreting, okay, now you're talking about a translation, that's not necessarily going to get my message across. When somebody's translating by message.

Steve:

It's like a bunch of men sitting around trying to write about women, or vice versa.

Kerry Johnson:

Yeah, that'll never happen. Anyway.

Steve:

And I think it's probably the same if you took a look at other communities like the gay community, the Hispanic community, the black community, they all had their own ways to communicate through print media, but they didn't have quite the conversation going on that is possible with with electronic media.

Kerry Johnson:

Exactly. And this is now opening it up for people to actually get out there and say how I want to live my life, I'm going to tell you how I want to do that.

Steve:

I think this is a very different landscape than Walter Cronkite, whatever recognize, but it really is a healthy thing.

Kerry Johnson:

Absolutely. Because I'm, as I'm mulling this over, it's, this is also a way for your neuro typicals to come in and see how somebody with disabilities navigate their life.

Steve:

Now let's rejoin the conversation with Dr. Beth Heller about media models in disability. You along with john clugston, had developed media models of disability.

Unknown:

So john became disabled when he was in grad school and got interested, he was a type one diabetes, and then had a car crash that left him a wheelchair user after the surgery. So he was in grad school and start thinking about what he was going to do his dissertation on. And so he thought there wasn't as much research about disability on the media. So his dissertation looking at how the news media was covering disability. So we did a big content analysis of a bunch of different publications and newspapers. And while he was doing that, he kind of saw these narratives came up with names for them, you know, like there's a medical model, there's the super print model, there's the minority civil rights model. So those were the kinds of things that he saw the progressive ones were things like the minority civil rights model, the cultural pluralism model where somebody was treated, just like any other person will be treated in the news story. I started doing my research. And when I was in my master's program was right after a Deaf President Now, I ended up doing my master's thesis looking at how the New York Times and Washington Post covers the deaf community before, during and after Deaf President Now. And then I went to grad school at Temple University in Philly, and decided to do my dissertation on how the media covered the mess with Disabilities Act, because I started a year after the Add pass at Temple. And so I started using John's models within after the ADA, I saw that things were starting to change and the coverage was starting to change. Because, you know, having a major Disability Rights Law, like the ADA shows the journalist that Oh, look, here's a political movement. And here's the legal cases that can happen because the law now exists. So I came up with some more progressive models, like the legal model and the consumer model. And then one traditional model, which is the business model, because what I was seeing with a lot of media coverage that came from the perspective of business community that thought the ADA was going to cost them a lot of money, and it was an unfunded mandate that they weren't going to do this and not have a bunch of people with disabilities. They're like we don't have any people with disabilities coming into our store and I was like, Yes, reason inaccessible. But you know, they just have this mentality that Oh, We're a business and a lot of the traditional journalists didn't know how to reach out to the disability community, really, they didn't know about really disability organizations and disability led organizations and independent living centers and things like that. So they were just kind of letting the business community dictate the direction of a story. And another thing and the disability community back then admit this, and they were kind of pitched at the journalism world, and they'd gotten it wrong for so many years that they thought, Well, we've got the ADA pass, we don't need to talk to journalists anymore, you know, everyone's gonna follow the wall. They didn't realize that by not talking to the media after the ad, a path, they weren't really available to the journalist. And what happened was all the business people were able to just write about how much it was gonna cost them when it actually most accommodations under the ADA were like less than $50, especially in employment, a lot of them were not that expensive, as long as you're building out an elevator. So you know, a lot of things were very inexpensive, and even ramps are not that expensive. And the ADA covers any problems of historic buildings, they don't have to comply with the ADA, you know, businesses that have less than 12. People don't have to comply with the ADA, churches, synagogues, all those religious institutions don't have to comply. So there's a whole big loophole there anyway. But the businesses were really all they could talk about was like, it's going to cost us a bunch of money, why they didn't understand that they were not going to be getting the business of disabled people, they were basically rejecting money from the disability community. The few that did understand that one of the money and disabled people was what I call the consumer model. This were the parts of society that understood that, hey, making your site and society accessible is good for business, because we'll get more customers, and that will be more money and our kills. I came up with those kind of models, because of the changes that the ADA rot and change, as I was saying in the journalistic coverage to

Steve:

the traditional models are less and less prevalent now. And you're seeing more and more of the progressive models in the media?

Unknown:

Well, I'd say it's still a kind of a mixed bag. I think that medical model is still very kind of in the brain of everybody, including journalists. I'll give you example, years ago with a 25th anniversary of the ADA and President Obama had a big celebration in the White House and the deafblind attorney Haben Girma was this, or she was the person that was introducing the president and vice president of big celebration. And so there's a picture that ran from the celebration of her talking to President Obama, because she uses a wireless keyboard, so people can talk to her by typing on the keyboard, and then it'll pop up on her Braille keyboard, and then she can type back, you can ask her questions on the keyboard, and then she will answer verbally, they did a story about her because her family is from an African country and you know, kind of the immigrant parent story, as well as though she grew up in California. And so you know, here's a great story about the celebration of I think it was on the NPR website, a picture of President Obama typing on the keyboard with Pavin Girma. And here's the story about mostly her and like what the ADA means to a younger person like her. And up above the headline, is the word help they put this story about the 25th anniversary of the ADA, in the help section. Does this story have anything to do with health? No, it's because the medical model is in the brain of whoever was putting that on the page, I believe it was NPR of their website. And they're just like they see a disabled to a disabled person in this picture. And like pop the health label on the top of that, I mean, just shows you how hideous this kind of like belief walked into people, minds, and brains. And this is very traditional that that would happen. You know, a story about politics and Disability Rights might end up in the health section of an old print newspaper, you could pretty much guaranteed I would

Steve:

probably limit the number of people that will read that

Unknown:

with online stuff. It's a little bit different, because it's not as prominent, I don't think people go and look for sections when they're doing online reading. Whereas Yes, it was probably more problematic when it was a print section, and you're mislabeling the stories in those sections. You know, to me, that is the ultimate example of how the medical model is ingrained in people's brains. And they can't separate people with disabilities from kind of a diagnostic category. And we talk a lot about that in my median disability class, because it was really hard for people that don't know anything about disability, the older generation, I would say, people like 35 and older, especially people that you know, may not have been educated about disability stuff. to them. It's like disability is diagnosis and they don't understand the bigger cultural, political identity picture. And that's journalists too, you know, for we kind of all went onto the internet and social media, though very vibrant disability publications, you know, full color magazines like mainstream knowability still exists. It's owned by the United spinal association which I think is a spinal cord injury group, but still for color magazine. And then there were very vibrant kind of disability publications that were having more rights orientations, the disability rags, its origin 1980. And mouth magazine started by somebody with a brain injury. And so these were like not for color magazines, but more like newsprint kind of on the less expensive side, but you know, before the internet, that's what, where you could get disability information. And my first exposure to the disability rag was, I was working as a copy editor when I was in grad school at the Baltimore Sun. And this story came across the wire service about this publication called the disability, right, it was like the AP, I think did a feature story about Mary Johnson, who started the disability rag and said about this vibrant disability publication that was kind of the way everybody could talk to each other and the disability rights movement and write about the issues they have, we've had a media call on where they talked about the bad media coverage. So I started subscribing to it, and that I saw this little ad in the back that was about disability disability studies conference, which was going to be in Rockville, Maryland, which was near me when I was in Maryland, that print publication is what led me to kind of the disability community. But this is part of a very vibrant tradition in US media history, where a lot of groups that haven't been covered by what we call the mainstream press, usually, like the white people of a major city or whatever, you know, have to start their own publication, because no one's covering. I mean, we have Native American press, we have African American media, because Chinese American media or Asian American media, like you know, media or Spanish language media, and then you know, in 1980, which there was a lot of disability rights stuff happening in the 1970s. That was when the Rehab Act was passed, but not enforced. And when disabled activists took over the federal building in San Francisco for 22 days, which is still the longest takeover of a rights group in American history. You know, when Mary Johnson started it, she was saying that there needed to be a place where this community of disabled people had a space where they could talk to each other and write about what was going on. And part of the Alternative Press that existed in our country since its beginning. And the people with the most money to buy the printing press kind of define what's news in the olden days. And then when things like desktop publishing made publishing our own more easy than like, the deaf community has always had its own publications because deaf schools around the country and every state had one back in the 1800s and early 1900s. They trained the deaf kids or the deaf men to be critters. The Deaf community has kind of the longest life of having their own publications. So you know, they wrote about things that were of interest to the deaf community, and they shared stories among all the deaf school. And then when those kids graduated, a lot of them started their own newspaper on their own. A lot of them went to work for mainstream newspapers. I mean, still in the 80s, a lot of the press office of a printing press section of the washington post was staffed by Deaf men. Remember, one of my professors in grad school, we're talking about that issue, because of my master's thesis was on the deaf community. And she's like, she used to work for The Washington Post, like, yeah, there's all these Deaf guys that work in the print room. I'm like, yeah, that's famous been happening for 150 years. So that was kind of what was going on in the print version of the world. And everything, you know, moved online, the disability rag became the ragged edge online. And I think they were still publishing stuff online until like, 2004. Now we have a big archive, I think they've given to one of the educational groups so people can use that stuff for their classes or whatever. But Cindy Jones, the publisher of mainstream magazine, is the one who got Wheaties to put the first Olympian or para athlete who's like, you should have a disabled athlete on there. So she kind of led the charge in the 80s. And then we finally put a disabled athlete on the Wheaties box. So you know, these are people that have been changing our kind of representation of disability all long and nobody knows who they are, but very powerful when somebody with a disability or disabled athlete is now on the Wheaties box, like all the non disabled athletes, and that starts changing our culture when people with disabilities are in these mainstream venues and being represented there.

Steve:

Yeah, I can certainly see a lot of people been doing a lot of work behind the scenes over the years.

Unknown:

And the internet, you know, it collapsed traditional journalism as well, and people are still trying to recover. But like I said before, it's still it created this kind of base for the disability community to like, really burst into the mainstream of the kind of media use now, which is social media and online media. I always say that everything comes with good and bad, your shortage, right? There was a good part of this as well.

Steve:

Dr. Heller talked about several different media models. In that that whole concept was very strange to me to begin with, because that was not trained in journalism. But it seems that when people are writing the subject about their writing has to fit into some sort of model. And it's not that they're prescribed to these models, they kind of develop when people start putting different articles together and saying, well, that belongs with this one that belongs under this kind of topic. The interesting thing is how everything with disability seems to fall into the same category, whether the person's a scientist or whatever, if you're in a wheelchair, you're disabled, and it kind of falls under one topic. If it was disability, it was a diagnosis of it's a diagnosis, it's a health issue, or a medical issue,

Kerry Johnson:

walking around with this label, no matter what your accomplishments are, right, you're

Steve:

gonna be put over here, you already seen one way is not an exact comparison. But if you had read here, and everybody interpret everything about you about your read here, instead of listening to what you had to say, or what you did, you might get really upset about the fact that you have red hair after a while. And it's the same thing people see the chair first, or they see the disability first, instead of seeing the person. And then the reporting seems to follow that too, is that if they're in a wheelchair, that is an object of pity, or they are defined a certain way, but they're not listening to what the person has to say, the different media models put things into categories, not just for disability, but in this case, we're talking about usually the medical model, other models that they had, she had several of them. The other two that I thought were quite significant was the business and the consumer model, the business model of being that the ADA came out and said that access has to be provided for people with disabilities. And a lot of goodnesses began to say, well, that's going to cost too much I don't have number of people coming in here that are disabled anyway. And of course, is Bethel or points out that they weren't there because they can't get into your office or your business.

Kerry Johnson:

So it's a matter of the businesses are interpreting the law then.

Steve:

Yeah, well, the problem is, she said, what happened is that the disability community figured when they had the ADA, they no longer had to talk to her journalists, because the law was gonna make everything right. And of course, it didn't. So who talked to the journalists, the business people, then they said, I have to widen my doorways and do all this kind of stuff in a push back against the law. And that would made it difficult. But then there was the consumer model, which is the reporting that of businesses that said, Yes, we're going to market toward people with disabilities, because they saw there was a money incentive there. This is a part of the market, they were losing. And so they adapted to it. But it's interesting how these articles fits into different categories. And it's got to be frustrating because with with the disability category, it seems like people never really, really listened to their own story. They were categorized because of disability. I think one of the ones that she brought up, it was quite interesting was happened to the 25th anniversary of the ADA act when having garema, who is a person I did not have heard of before, but she is an individual, an American citizen, born of immigrant parents, and she is blind and I believe that she is also deaf, and she was at the White House meeting President Obama and then what is it? What does it show up? The whole article shows up in the health section of the newspaper, because why? Because she has a disability. So it has to be health. It can't be anything about the ADA. It's not talking about this wonderful gifted human being but it ends up in health because that is the medical model of reporting. We will be posting on our Facebook page, photos of Haben Girma meeting brock obama and also a small video we found in an archive and their interaction they had so we hope you'll look that up. And now back to our interview with Beth Heller. Let's end on a humorous note. on chapter eight, you talk about the new phase of disability humor on TV, and you had one quote in there from Gary olbrich disability studies scholar that disability humor raises a hidden paradox that make people feel uncomfortable. What is so funny about having a disability when others think it's a tragedy, I talk about disability humor on TV and how that's evolved to our current state.

Unknown:

I did a research on this TV show that the quadriplegic cartoonist john Callahan had on Nickelodeon for a season called pelvic that like a kid's cartoon show that had the main character was a kid with who used a wheelchair. And so I thought that was kind of the beginning of a much more kind of inclusive view of disability and humor. And I think it has continued and again, just like we were talking about with kind of journalism, style media, I think now with YouTube and Netflix and streaming and things like that disabled comedian, disabled writers a lot. The people that are actors are now kind of being able to get into the world of air quote, television, it might be on Netflix, it might be on YouTube, it might be on some other streaming cloud. form or maybe on network TV, you know, we had beefless for several years that had a character with cerebral palsy played by disabled actor, we have a show everything's gonna be alright that has a first autistic actor. It's a comedy. We have these fantastic web series, I highly recommend Skillshare My Gimpy wife, she did two seasons, short episodes. You know, she's a disabled actor who was trying to get more work. And so she does end up shooting her own web series, crowd sourced it. And so she has to, to have her web series might be live, or several other web series. Now they're streaming series, a Ryan O'Connell, who's a young man with a gay man with cerebral palsy, but kind of very semi hidden cerebral palsy. So what's really interesting about Ryan theory special, which is on Netflix also has short episodes, like about 15 minutes each of about his own journey against what we call internalized ableism. So because he can kind of hide his disability, he affected I think, one of his hands and one of his legs, but then he had a car accident. And so then he explained away his disability, because people were much more air quotes, sympathetic or didn't see him as a disabled person. And when they thought that, oh, he was hit by a car, there was always an expectation that he, you know, wouldn't lamp or wouldn't have a disabled hand for that long. And so, you know, just kind of the nightmare that was that was to a psyche. When he was basically closeted as a disabled person. He was out and proud as a gay man, but he was closeted with his disability. And it's kind of his journey. And I read an interview with him in the Hollywood press, and he wrote a series he been a writer on, I think, Will and Grace and some other sitcoms, we have the writing chops. And actually, he became a writer because he was a blogger before. So his writing ended up getting him to be a TV writer. And then he wanted to explore his own experience. And he said, the reason he ended up playing the ryan character himself, even though he's not really trained as an actor, was because he was so afraid that a non disabled actor would get hired. So it's a very funny theory that I think it's almost ahead of the curve, because people are not that aware of ableism. So now they're learning about this old other thing that affects disabled people, which is called internalized ableism. And then this person in the series two, he can't stand that he thinks he hates them. And really, she doesn't really hate him. She is very honest, and brutally honest. And she just kind of confronts him at one point, and says, You need to do a story about your internalized ableism if you're very ashamed of being disabled, because she had set him up on a date with her cousin who happened to be deaf. And he was very offended that she thought he should only date somebody who had another disability. She was like, Did you see him? He's very attractive. Like, I wasn't putting you together for that reason. And she just kind of told him, You need to like deal with us internalized ableism Benioff has a very kind of dysfunctional relationship with his mom and very codependent, she kind of didn't want him to grow up. And you know, with affecting her relationship with other people, we get into some really interesting issues. And it's kind of like you kind of cringe at some of them that he can be that brutally honest about his own wife, not that great of a person early into the theory mom is like blowing up her own relationship just because she can't seem to let go of her son. And she's kind of infantilizing him. And he's like, happily keeping the infantilization liking it, you know, like her coming to his rescue with everything. And you know, it's affecting his friendship with people who want him to just be his authentic self. And when I find out he hasn't been as authentic self, he almost loses his friends. And so it really gets into a lot of nuance that, you know, people are getting this extra level of somebody's life now with a disability. And so I think we really can't even you know, pals with was like a very first early step. And now we're getting into like, the middle ground of people getting into really wonderful kinds of explorations of the psyche of somebody who can hide their disability and the problem is when they're trying to hide it and all this kind of thing and now we're kind of I think we're kind of hitting a golden age of a lot of disability representation on television and a very feel very confident about the future of film as well because I think film studios are finally understanding that nobody wants to see an authentic casting you know, they don't want to see non disabled people playing disabled people. And you know, especially the younger generation that's not going to wash they feel like they've been scammed or have the wool over their eyes if they've you know, invested this time and watching this and they find out what that wasn't an actual disabled person. No less. Yes. So YMCA studio, which I happen to do some consulting for over the last few months has three Films coming out in 2020 that have disabled actors, one of which is called run. And it's a suspense thriller. And it is how I mean like it has two stars. So there's a mother daughter thriller, and the daughter is played by wheelchair users to her Allen. And she is fantastic. And and this is her first movie role. And she is so good at that doesn't have a lot of characters in it. He's in almost every scene in the movie, but there's not even any dialogue. She's just having to act with it not any other person have dialogue with. And I won't explain what it's all about, because I don't want to ruin it for anybody. But spoiler alert yourself to the theater, if you'd like thrillers, especially if you can't say anything scary, just be certain to close your eyes a bunch when you're watching it. I mean, this is like fantastic. And you know, when I was talking to Lionsgate, because I did a presentation to them in January of 2020, it was clear this is the motion picture group of Lionsgate film studio. And all the people there were on my side, they wanted to have authentic representation, they wanted to not have people protesting their movies for you know, having fake disability in their films, they got it. I mean, it was very eye opening to me to to now see people in the film industry wanting to move to there the same kind of crisis that hit journalism, and that hit television and now hitting film. There's not too many people go to the theater anymore. And the people that do go to the theater in the 12, to 25 demographic, and these younger people are not going to put up with fake stuff anymore supposed to be like sci fi, or whatever they want the best CGI and the best computer graphic ever. And they want authentic performances. And the next I think they're coming out with Avatar to be in 2020. And a lot of complaints about avatar. First one, the James Cameron sci fi film was that they use a fake disabled person. So the actor who played the disabled wheelchair user, and that version was non disabled. But in this version, they have the deaf actor CJ Jones, who was going to be in that he was in baby driver and some other films. So they have African American deaf actor and the new avatar. So I think we're now seeing the corner being turned even with the film industry, which I knew was going to take a long time for them, because unlike television, which can change their direction really easily because they have so many episodes to create, like the TV show Switched at Birth that had number of deaf actors on it, you know, like that they originally had one of their main deaf actors was only going to be in a couple episodes. And but he was got so popular so fast that they made him a main character. You know, the story, even though it was about these two teenage girls, the teenage Deaf teen boy became one of the major characters. And because he got so much, they got so much good feedback from their audiences. And film doesn't really have that luxury to have to be so super secret until the film's you know, on streaming or in a theater that they can't write the ship that they've taken in the wrong direction. So now they understand that they need to be thinking about good disability representation from the beginning, or they're just going to, you know, have an abysmal failure at the box office, when it comes out very optimistic about some of the entertainment media going in the right direction. Because, you know, I was talking to one of my cousin's who's an English English instructor, but doesn't really have any connection to disability now telling her about the changes. She's like, I don't think people today and she's a few years younger than me, and she, I think she just turned 50. But anyways, she, you know, was used to the student population, because she teaches at a university. And she's like, No, we still put up with that fake fake disabled people anymore. You know, everybody wants a real if they're spending the time and money to go to the movies, and she still goes to a lot more movies than I do. Like, people don't want it in authentic representation. They don't want to feel like they saw this great movie. They're really excited about the acting of this particular character, and they find out, oh, yeah, that person wasn't disabled, they're gonna feel like not have good feelings about that movie or that studio that did that action. Hopefully, we're going in the right direction.

Steve:

Maybe that's an offshoot of reality TV, they want to see the real thing. I don't know,

Unknown:

right? Yeah, maybe. So I mean, a lot of people gripe about reality TV, but that's been another venue where people with disabilities can kind of get power and tell their own story. I mean, the one of the first big ones with little people, big world about parents that were little people. And they have four kids, one of their four kids who was also a little person. And you know, you can tell the difference between the first season and the second season. The first season, they got very high ratings, it was on a TLC channel on the network. And they're one of the first shows to get such good ratings so fast that they greenlit the second season really fast. And by the second season, they're producers on the show, so they have a lot more control. And also for a lot of reality TV that features disability. The Disability themes run out really fast, then it's just a reality show where there's doing regular stuff. And you know, I love the show born this way, I'm very still very upset that it got canceled. It was on the a&e network and it was about Young adults with down syndrome. And I think it was revolutionary as well, because you're just seeing young adults with down syndrome is getting on with their life, you know, they go do different activities, but because of people with Down syndrome who aren't going to be inauthentic, they're just who they are, you know, one of my friends who doesn't like reality TV, but has a brother with intellectual disability, she loved that show. She's like, it's just so honest and genuine, you know, like, it's just people being themselves, and you're getting to see into their lives. And because if you don't have somebody with down syndrome in your life, you don't know how people with Down syndrome, live their life, and you find out they live their life, just like everybody else. But more intuitive. I think watching the show, one thing that I thought about is I think a lot of people with Down syndrome have a lot higher emotional intelligence than people without that disability. And also, because they've been educated their whole life and been talked to about how things work. They're a lot more savvy than a lot of non disabled people, because they've been told I mean that, you know, we usually stop talking to like older elementary school kids, we want things to them to figure things out on their own, which I think is a really bad idea. Because a lot of people like, you know, when they're teenagers, like have all these wrongheaded things that they don't really learn on their own, where people would downtime, I think people have been talking about how things work into their adult years. So people have also treated them badly and ignored them. So they also can like gauge who people are better than other people and have a, like I said, a lot of emotional intelligence. And I think they're really savvy, evaluating who was good and who's bad. And, and, you know, like, also the things that they're facing are kind of different than other young adults sometimes. And then sometimes they're exactly the same. Like, you know, they had a big wedding on the show, and people were navigating romantic relationships. So that kind of thing. I think that is very empowering for audiences, television audiences to see what cheers some adults with down syndrome, their lives are just like everyone else's. And it's a reality show that doesn't have a bunch of fake drama on it, too. We're not like, causing fake fight, like a lot of the reality show, you know, people all know, it's kind of like, like more scripted and scripted TV. And, but you know, with a bunch of adults with down syndrome, it's really, truly kind of unscripted. And just people being there kind of honest, authentic selves

Steve:

that was born this way.

Unknown:

Yes, we're on a network. Yeah, the other thing, that's the power of where everything is, I want to fly to Australia. And they have these like entertainment centers that are on the back of every seat. And so you know, you've got hundreds and hundreds of movies and TV shows to choose from, from flipping through the TV offering. And therefore in this way, you'll hear on a quantum flight to another country is the show and think about how powerful that is. Now the other countries get Netflix, they're able to watch special, they're able to watch, you know, all these shows coming out of American Hollywood, about disability, I think we have the second largest after India, we have the second largest entertainment industry in the world. And think about how many countries all they're watching is American content from our Hollywood's or some British content. Or if they're in a country that like bollywood movies, a lot of Indian content, that stuff is on TV and film is going to go to export it, you know, we're always exploiting American culture everywhere because of our entertainment industry. But finally, good disability representation and our entertainment content, which is going to you know, mean, in Nigeria, on Nigerian television, someday, they're probably going to be more open to having disabled people in their shows in New Zealand television, they're going to have more openness to having disabled people in their shows, you know, which is this kind of stuff spreads, I think a lot of good information to other countries, not just about disability representation, but about the fact that audiences like this. And so it's not taking a risk to put a disabled person in your show. Cuz I think that, you know, money drives a lot of almost everything we do in America 100%, of what we do in America, and you know, so Hollywood would not do this, if it was gonna turn people off, and they weren't gonna watch this. And it's the same with advertising. If they thought that this was going to not sell the product, they wouldn't include a person with a disability on their ad. But think we've talked about before, a lot of companies that start including people with disabilities can actually point to products that sold better because it had a disabled model of advertising it and under our truth and advertising laws, advertising already had to use people with disabilities in their ads, all this authenticity, I think is gonna be a snowball effect of not just affect better representation in America in the future, but better representations all over the world. I hope in the future,

Steve:

if you had a time machine, and you could sit in that time machine and like HG Wells go, let's say 50 years into the future. Yeah. What would you like world to be, let's say the optimistic view of the world for 50 years from now.

Unknown:

Yeah, but people with disabilities have an equal status to everybody else. There's not really this kind of separation, it's just what I would like for the whole of our diversity, especially on a state that, you know, we have one of the more diverse countries, in terms of people having all different kinds of ethnic backgrounds, and racial categories and disability categories and gender, and, and for everybody to continue to up themselves and have their own community and identity because I don't think like, let's get it all gone. We don't acknowledge any of this. That's not okay, either, because the disability community still needs their community and to have the experiences like the African American community still needs African American community, the Asian community, the Chinese community and the Cuban communities, these communities and these identities still need to exist, but they're honored equally to everybody else's. And they're not like, oh, diversity, is everybody non white, we're No, it's not that it's just we value everyone equally. And everyone can have their own community and identity. And and they're creating, you know, they're part of the world. And so I think that is really, I mean, there's a show on the free forum channel called good people. And it's really nice to see all young people is the spinoff from a show called The Fosters, which was to lesbian moms who had a bunch of foster children and one bio child. And so now, to the foster children, or adults, they're raised as sisters. So they're now on their careers as adults in Los Angeles, one of the sisters was Caucasian wanna Latina they now live in this, like group housing scenario in Los Angeles. And you know, like, with all this group of young people, some are bisexual, some are trends. Some are lesbians, some are straight, some are African American, some are Latino. And it's what the world looks like, you watch that show, you're like, finally a show set in Los Angeles that actually looks like Los Angeles. And it's not like 10 white people living together, you know, we've gone away from a friend's show, that is not reality. And so you know, that's my version of the future is that we have, you know, representation that looks like the country that we live in the community that we live in. And, and you know, we'll be a lot less ableism, obviously, in this future world as well. A big part of this, but ableism is not there, no more racism, either or sexism too. Let's get rid of it, all the bad stuff,

Steve:

get rid of all the isms just be people,

Unknown:

right? People are still gonna have pride in their, their identity, and they'll have their own community, because that's what you heard when, you know, like, there was a lot more African Americans only kind of shows that you'd hear like more bigoted, racist, people talk about why do they have a show that has only black people, like, there's a white person not understanding that they've always watched shows that only have white people, and they finally see, you know, like, back in the 80s, or whatever, they finally shoot a show that only has black people. And they're like, what, what, why is that, like, they don't even see their own, like racism, I think, you know, there's a lot more awareness, people are understanding their own white privilege, their own class privilege. And I think that's also a good thing to have in the future as people understanding what they have. And also just to shut up and keep quiet, if it's not who they are, you know, because you have a lot of people saying, you know, back to the guy trying to help my blind students across the street, I think some people like go the wrong direction, they don't realize that they're able to just or racist, or sexist or whatever. So they try to prove themselves that they're not, and they end up making everything worse, because they don't understand the issues as much. They don't even understand how to be an ally. And I think, you know, the kind of the concept of ally, which I think comes mostly from the LGBTQ community, you know, the most people will understand that sometimes being an hour. And I mean, just supporting somebody through kind of osmosis that you might not need to be in somebody's face that have a bunch of people want to get together with just their community. No, that might not be a place that you need to be as we're ending one of my African American Facebook friends, like, Yeah, why do we have to stop having budget free? Must we get one more day because today is Leap Year day. But why stop? And the same kind of thing has happened with October for disability representation, October has become like Disability Awareness Month. So why are we only talking about the issue in one month of the year? Why are we only highlighting contributions of African American community in one month, the shortest month of the year? Why are we not just enjoying the information about everybody, this contribute to our wonderful world all the year long, and that's the white people.

Steve:

What a novel idea to get over the idea that cultural identity of one group comes at the expense of another group doesn't.

Unknown:

Right. And I think Finally I think that's coming. There's still a lot from a folk out there, but I think the gay rights movement has helped that Oh, lot when people finally recognize that what is gay marriage have anything to do with a straight couple, it doesn't have anything to you know, it doesn't affect your marriage or your church activities or anything. So I mean, I think hopefully when people start understanding that, like you're saying the rights of one community does not take away the rights of another community, and we shouldn't be fighting against each other, we should be uplifting everybody, everybody has a contribution. I think that's another horrible kind of narrative that happens around the disability community is that people just believe they have nothing to contribute, you know, that tragedy, pity medical model, really horrific consequences of no to low expectations from the whole community. And that is devastating. And it causes what we're talking about, like internalized ableism, affecting people's psyche.

Steve:

Well, it sounds like we're heading in the right direction, the movie studios are being more aware televisions, being more aware of society seems to be heading in the right direction, that we might hit that goal in 50 years where people can be celebrated for what they have to offer and not be judged again, and another group that has some reason to believe they shouldn't have rights,

Unknown:

right? I think the biggest the biggest issue, or the nefarious, evil uses of all the things we've talked about, I mean, not okay, if Russia hacking our social media to change our election and all the kind of ways that we're being manipulated with these new sources of media and not even aware that things are happening. And people that are anti social media will sometimes ask me, why are you still involved with it? I said, I'm involved with it. Because this is where the disability community is. And as many bad things I know are coming off of social media that I just see all these positive that we're not there, because you know, I was alive before the internet existed. And I knew how things were one last story. When I was a journalist in the 80s, I did a series for a newspaper in Texas where I worked on people with Down syndrome and what was going on with john, so I don't remember why it is a story. But I think the reason I did it probably like in 86 or 85 is because about that time in the mid 80s was when they started understanding they should be doing early intervention with people with Down syndrome, and not flowing into institution. And I will never forget all the interviews I did for that, especially one I was telling my class about this interview with this older gentleman and his son, his son was now an adult probably in his like late 30s, maybe even early 40s. Dad was like 16. And the mom had died. They had three other kids, the young man with down syndrome was named within him was his oldest child, they had three other kids that didn't have disabilities, they will often so you know, there was a nice relationship because they were kind of supporting each other's roommates now, but dad was older. And you know, he needed to be in a supportive environment because he can live alone, and the bomb had died and kind of a joy for them to be together. Because the son was born in the 50s with 85 father relays a story to me personally about you know, the day his son was born, he was so excited that you know, back in the olden days, so he was on the birch room or the rave or anything and his wife give birth, he goes into fear the doctor and they're like, okay, we're not going to give you your son, there's something wrong, he has something called Down syndrome, we're just going to take him and put him in an institution that's going to be best for him. And his father was like a like hell you are. He really literally walked into the nursery to which one of my son You know, we saw the little placard card thing. So his name was at least on this fun, like bassinet or whatever it goes to the nursery picks up his son, the back into his wife room said, got to get dressed, we're leaving here. They're trying to take our son away from us. So she gets dressed and they leave. I mean, like, tell my students that story and research that shows the more educated you are actually the less accepting you are of your disabled family member. And I'm like, that's fun, was very lucky that he had a working class dad, but all he cared about was first child, why calco is going to drag them out of the nursery and never let him see him again. Especially since you know, there was like no medical reason he was just diagnosed with down syndrome at birth, you know, it wasn't like he was on any tubes are needed any surgery or anything at that time. And the doctor was just saying he has Down syndrome, we're taking him off to an institution, we don't recommend you even seeing him. And he was like, what world was that? Okay, so he just marched into the nursery, and but can you imagine like college educated parents? Okay, Doctor, is that right? Oh, this is so traumatic for us. It's horrible. But we'll do what you say. I mean, think about all the educated families that were scammed by these doctors that actually thought they were doing the right thing because they didn't know that people are better off with their family and that these institutions were not helping anybody. I mean, there's been actually several memoirs by siblings, sometimes they don't even tell the other children that the baby live and that goes off to an institution and the family finds out later. You know, these things Talk about trauma these siblings want to be with their family. You know, they're still people. I've a friend who has a 10 year old with down syndrome without doing any test, the doctor told her that he was blind, zero medical reason. He didn't have to start wearing glasses early, but he was not blind at all. I mean, you're already being given this diagnosis and then use like, non facts. I think doctors are getting better about how they communicate with people. There's still that trauma that was caused, it's going to be going on for decades and possibly even generations.

Steve:

humor in TV and movies and all the entertainment that has come out that supports disability and represented in an authentic manner,

Kerry Johnson:

authentic manner. I

Steve:

thought that is that is the big difference. It's very important that we're seeing more and more of it. I love it. In the fact that people can do this on YouTube and Netflix and streaming didn't catch the name of the actress who crowdsourced her own series and ran a series on that

Kerry Johnson:

the series as My Gimpy Life, and I give you Google it, it will show that how interesting we're going to do. In the future. This is a con No kidding. A lot of stuff to look at it, put it on the list, put it on the list. It just I mean, I looked really quickly here is a beautiful young woman aspiring actress, but she's in a wheelchair. My Gimpy Life. There you go. And she couldn't get hired.

Steve:

And she couldn't sell the same. So she did herself. Yes, that is the definition of gumption right there.

Kerry Johnson:

Right. And Ryan O'Connell writing and then acting in

Steve:

and that is called special

Unknown:

special. And it's

Steve:

on Netflix. Yeah, I haven't seen that yet. But I do want to see that. It's really pretty cool.

Unknown:

I mean, the

Steve:

the, the complexity of that, okay, that he's got this, he's gay, and he can accept that. But he can't come out as a disabled person, interesting able to fake it. And so you got this internalized ableism. I never heard of that term before. But I can understand I can see that. The complexity of that I think it's gonna be very educational to watch it and very entertaining, because obviously, he's being very honest and transparent.

Kerry Johnson:

I mean, I really like that so often. Now we're moving into an area where the authenticity is going to be

Steve:

there. Now. I hope you all enjoyed this interview with Beth Heller, I think was very educational for me and I have a lot of things to watch. Now. We have movies and TV series, and some of them are been cancelled, but they're always playing the old parts of it

Kerry Johnson:

bunch of information and encouragement that Dr. Beth Heller had to share it with us. And yeah,

Steve:

as we bring another episode to its end, we want to thank all those who work behind the scenes to put this all together. First of all, this Alex, our producer, and Holly, our web designer and guru of all things technical and artistic. And Daniela, our intern who does a lot of work behind the scenes also. And I want to thank Carrie my co host, most of all, we want to thank you our listeners. Now please visit our website and our Facebook page for resources mentioned in this program and the names of some of the TV shows and movies that you might want to watch. Also, we definitely appreciate it if you would tell your friends about our navigating life as we know it and leave comments on Facebook suggesting topics for future episodes. Thank you and be well.

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