Hi Friends Tim Villegas here, think inclusive is off this week as we prep for the homestretch to season 11. So, instead of an episode we have a feed dropped for you from our friends at AMI in Canada. It's called the pulse. In this episode, journalists Amy Silverman and Rebecca monta Lyon discuss ableism journalism and intellectual disability. They explore the importance of plain language and news reporting and the need to include the voices of people with intellectual disabilities themselves. The guests share their experiences working on a pilot project that focused on cognitive accessibility in journalism, and highlight the lack of scholarly research in this area. They also discussed the challenges of navigating relationships with caregivers and parents when covering stories about people with intellectual disabilities. Enjoy the feed drop from AMI the pulse, and learn more about making journalism more inclusive and accessible. We will see you back in our feed next week.
I'm Joey the Gupta and this is the pulse. People with intellectual disabilities are often left out of the news. When there is coverage, it is often dependent on popular stereotypes. People with intellectual disabilities are thought of as tragic dependent, desperate for a cure or alternatively as super Crips, overcoming the odds. It's not often that we hear from people with intellectual disabilities themselves, especially in the news. We instead hear from their parents or caregivers, speaking for the person with an intellectual disability. So people with intellectual disabilities remain unknown and unknowable, even to themselves. Good journalism, though, can change how we think about intellectual disability, but only if journalists have the courage to confront internalized ableism. Today we discuss ableism journalism and intellectual disability, it's time to put your finger on the pulse.
Hello, and welcome to the pulse on AMI audio. I'm Julia Goethe. And I'm joining you as I always do from the Accessible Media Studios in Toronto. My hair is an Ubuntu day as it is on most days when I go to record, and I'm wearing my purple sweater, it's got about three fourths length sleeves, a V neck and it's an a dark purple. I hope you'll take a couple minutes to subscribe to our channel if you haven't already done so I want to welcome the many new subscribers we've had in the last couple of weeks. It's so great to have you join us and be a part of the pulse of family as it were. And I hope you'll tell your friends and family about the program and encourage them to join the YouTube channel by subscribing so you'd be notified about future videos. If you're catching the podcast. You can also subscribe to the podcasts wherever you might get those. And again, you'll be notified when future shows come on. We have we have a number of really exciting programs lined up in the next six to eight weeks. Been busy pounding the pavement, looking for interesting people to talk to. So I hope that you will take a couple of minutes to subscribe and join us as we explore interesting topics in disability studies. I've got two guests today that I'm really eager to speak to. Amy Silverman is an investigative journalist and with her today is Rebecca Monty Lyon, who is Assistant Professor in disability and Technology at the University of Toledo. They along with Bina Raghavendra them are the co authors of an article that was recently published in the Canadian Journal of disability studies. The article which really piqued my interest is called intellectual disability and epistemic justice in journalism, reflections from a pilot project. While that's quite a mouthful, but let me first welcome in Amy Silverman, and Rebecca monta Leon. Hello to both of you and welcome to the program. Thanks for speaking to me today.
Thank you for having us.
Thank you. Rebecca, let me start with you. Can you describe the project briefly for us? So you said it's a pilot project? What were you trying to accomplish with it?
Well, so I actually think that the history of this project actually might be better if Amy gives us the context and then I can tell you about where we are now in the the research part of it. So I might pass it over to Amy for the history. Sure. Well,
we all know what happened in 2020. I had A really interesting journalism you're planned I was, I did a local reporting network project with ProPublica. And the Arizona Daily Star, which is the daily newspaper, in Tucson, Arizona, near near where I am. And the entire project, the whole year was devoted to reporting on the challenges with getting services for people with intellectual and developmental disabilities in Arizona, which has a reputation for being really the best state in the US for services. But just because it looks that way on paper doesn't mean that it's, you know, that it's actually the case. And so I was, you know, all ready to dive in. And I had, you know, a lot of traditional journalism plans, I had a bunch of public records requests I wanted to make. And I really was excited to be able to travel around the state, and spend time in person with people with IDD as we call it. Because that seemed to be, you know, really the best way to get to people's stories and in a meaningful way. And which sounds kind of obvious. But of course, you know, by March of that year, we were not going outside, let alone meeting people whose health might be more vulnerable than that than the average person. So I talked to the folks at ProPublica. And Bina was on their audience engagement team at the time. And we started brainstorming ways to engage with our audience that were creative and different. So actually, the first thing that we came up with, even before plain language, was the idea of doing a storytelling event. And Becca and I had already collaborated earlier on some storytelling work, we're kind of in the early stages of thinking about it. And so as a way of reaching out to the audience, and getting pro publica really likes to do that, you know, as a way to, to build sources and to get interest, we did the storytelling project. So Becca was already part of kind of part of our team. And then as the pandemic continued, and we realized, you know, again, that we were not going to be able to meet with people in person, we thought, again, like, this is a really great opportunity to have this whole year to look at this, how can we, again, better engage with our audience and some really important translations, plain language translations had come out that summer, and I started talking to Becca about it, and she is truly like, my, my guru on all of this and, and knows so much and has taught me so much. And she said, Well, yeah, there's this whole plain language thing I didn't, I had not really known about it, I kind of thought of it as sort of dumbing things down. And then I also thought, you know, in journalism, we should really be speaking plainly and clearly, no matter what we're doing. And I remember, you know, in these early discussions about doing these translations, I said to somebody, can I just not use words like a femoral and we'll be good. And you know, of course, that's not the case, as Becca will explain, I'm sure. And so we brought Becca, we were able to bring Becca in to do plain language translations of our work, which was really great. We also did some work with graphics. And, you know, we weren't sure, but we thought we were the first mainstream media outlet to do this. In fact, we were, and the accolades and the and the retweets from fancy journalists and the articles and, and we were lucky enough to win some awards. And we're truly grateful for that. But at the end of the day, I said to Becca, do you think a single person with an intellectual disability actually accessed this project? And we both had to say, we're not so sure. And we had to stop and ask why. And that's what led to the plain truth project.
Yeah, I'll just I'll just follow up on that, if that's all right. Because I think, you know, as Amy describes, this was this pilot project was really just a series of opportunities that kind of fell into our lap. And so we were creating these methods both around, you know, community access, which we talked about in the article, as well as plain language as a mode of cognitive access to the story itself. We were going to building these tools as we were implementing them. And you know, as a researcher, my immediate instinct is to take a step back and think about how we can move forward with this work rather than just reproducing it because that's what we did when we had this opportunity to do it. But figuring out what is actually going to be the most impactful to people with intellectual and developmental disabilities. As consumers of news from here on out, Rebecca, how much
scholarly interest is there in people with intellectual disabilities not just sort of as being the subject of new stories, which we see a lot of, but do people actually think actively about people with intellectual disabilities also being the consumers of news, or were you sort of blazing a bit of a trail when you said that we need to emphasize Sighs Clean Language and and deal with some of those issues around cognitive accessibility. So
there is very, very little scholarly work in this space. There's almost no research that exists in this space. But I also want to acknowledge there has been work by disabled activists for many years in this space. Right. So I think, you know, there are a number of projects in the US, the Autistic Self Advocacy Network has done a ton of work on plain language and cognitive access in their, their materials. And in the UK, there is an organization that does something called Easy news, where they translate the top news stories into into an easier to read format. But there's almost no scholarly work on this to say, to see if these materials are actually getting into the hands of the people who want and meet them. Or if the way in which they are being created and used is the the best way to do it for the the the end user. And so that's where we've kind of developed this new pathway into doing some additional now qualitative research in in this space to really figure out we need a foundation here before we determine what the best practices are. And
we realized we had never stopped to ask people with intellectual disabilities, what they want to read about or where they access the news, like just the most basic questions, we learned some stuff that was pretty surprising. And we kind of thought, you know, we knew everything. That's
really interesting, because one one gets the the impression, Amy that journalists are very busy, they're always running around chasing stories, they have deadlines to meet, when you try to have conversations about this with editors and, and other people who had to assign stories, who were accepting pitches, how much interest was there, not only in covering stories around people with intellectual and developmental disabilities, but in really taking a deeper look at how we do journalism, and revisiting some of the accepted practices in journalism? Well,
we're not working with a news organization on this, we're doing it on our own. And we haven't really presented I mean, except for this academic paper, we haven't presented our work to the journalism community. So it'll be interesting to see how they respond to it. You're right, there's not a lot of space, particularly these days in journalism, for this kind of work. And that's why I really admire ProPublica, and was so lucky to get to work with them, because they they give community journalists the time and space to do more and to work on a topic for a year. And this was kind of an unusual approach, but they have gone on to do more plain language translations, and Becca has has done them, for them. And for other organizations, other media outlets as well, is that gonna happen on a on a whole scale level, unfortunately, I mean, just the resources are tight. And, you know, just because you have the idea that something like this is really important, doesn't mean you're going to be able to replicate it on a, you know, say on a daily news, breaking news, you know, scale, I've got it, that would be hard, we did have to
pitch this idea to pro publica, in the beginning to I mean, there was there was quite a lot of effort that we had to make to just explain what plain language is or what accessible writing is, and why it matters, and why it's different than having something be screen reader accessible or something like this, that it's a whole different kind of avenue of access. And, you know, to to ProPublica as credit, they were willing to engage, you know, there's extra coordination, there was extra time, there's extra legal review, that made it possible to create a plain language version of something that has the same kind of journalistic integrity as the formal text. And you know, they're right, they had to
fit the lawyer in. Yeah,
I think it might be really good at this point in the conversation to give the audience a sense of why plain language is so important. And one of the things that's really interesting and cool in the article is you have an excerpt from one of your articles Aney. And then it's transcribed, if you will, are translated into plain language that of course, done by Becca. So maybe if you have a few minutes back and you have it in front of you, would you be open to reading out the excerpt from the article as it was first published and then giving us the plain language translation. So we really get a sense of why it is so important to have plain language and what and why it sounds so different. Sure.
Yeah, absolutely. So this first excerpt is coming from the formal text or the original text fewer than a third of the estimated 157,000 Arizonans with developmental disabilities receive any home and community based services and an even smaller number actually get access to therapies, day treatment programs, job training, housing and health care elements designed to allow a person to live as independently as possible. People who applied for services just I have an arduous and arbitrary qualifying process. One woman who relocated to Arizona with her adult daughter who has Down syndrome was told she had to prove that her daughter had developed her condition before she turned 18. Even though the condition arises from a genetic difference that occurs at conception. And then I have the plain language excerpt here. There are many people with DD in Arizona, most of them do not get home and community based services. Very few people with DD get everything they need to live on their own. Some of those things are therapy, day programs, job training, housing, healthcare, some people have to wait a long time to get help from DDD. Sometimes they do not get help at all. One mom said she had to prove her daughter had Down syndrome before she turned 18. All people with Down syndrome are born with it, it is not possible to get down syndrome after you turn 18. And that's the end of the excerpt.
That's fantastic, because you're giving out the same information. But you're just writing it differently as simple sentences and you know, just clear language, it's really fascinating to see how much of a difference there is and how far it goes and making materials accessible to people with intellectual disabilities. Amy, as a journalist, when you started to work on this project, did you start to think about the stories you pitch and the stories that journalists often tell about people with intellectual disabilities? If by using plain language if by introducing the voices of people with intellectual and developmental disabilities themselves, rather than going to say caregivers, and parents? Do you think it makes a difference to the kinds of stories you tell us journalists about this community?
Oh, thinking about playing language and working on this research project has changed the way I think about this journalism around disability tremendously. You know, we typically when we cover disability, when we cover a lot of things, as journalists, we are either telling a horror story, right? This is just this horrible thing that happened to someone, or we're telling this incredibly positive story about, you know, The Waterboy on the basketball team who has Down Syndrome and, and the and the team is in their last game of the season. And they're 30 points ahead. So they let him on the court and he makes a basket and everybody's happy, you know, except me, because I like those kinds of stories, because they feel you know, they feel a little bit contrived. It doesn't really matter. One of the things I've learned is it doesn't really matter what I think it matters what people with IDD think of those kinds of stories. And we had some surprising reactions from that. But one thing I learned is that, you know, it just in centering coverage on people with intellectual disabilities, it sounds so obvious and silly, but it really makes you stop and think about them as individual people who should be covered in the same way as we cover everyone else. You're because you're just forced to think about the consumption of news by the consumer it's about and it changes the way that you think about what's important in storytelling and journalism, because you're thinking about what's important to them. Now, that doesn't work across the board, right, we still need to have unfortunately, we still need to have investigative work on horror that, you know, that would be called horror stories. We can't stop uncovering that kind of thing. But, but it does make me think about the way that we approach telling those stories differently.
Rebecca, what do you think needs to happen here? I mean, I know you haven't really had a chance to show to share the findings with journalists. But again, thinking about some of the day to day constraints that many journalists deal with? How would you like to see at least having the practice of plain language more widely adopted it to your mind? Is this something that we could do in the in the context of the 24 hour news cycle? Or, you know, making sure that the articles that people read on websites have plain language translations made available at the same time, do you think we could actually see ourselves getting there?
Yeah. So before I answer that question, I just want to follow up on on Amy's response from a second ago, because we have conducted now a number of focus groups with people with intellectual and developmental disabilities, about their news consumption and about the representation in the news. And something that Amy spoke to really, there's a quote from one of our participants that really, I think resonates here she says, I'm not somebody you can use as a rag doll or a dog to put on the best to put on a post to show us off. I'm a human being with feelings. And it seems like Amy says it seems so obvious but you know, that's that's the fight right? That's the the uphill battle because there are so many misconceptions and stereotypes. hips, about people with intellectual disabilities. But to your second point about how we might now go and engage with journalists meaningfully about kind of shifting the culture, one thing that we're doing is this fall, we are bringing together a group of journalists as well as a group of self advocates with intellectual disabilities to have a collaborative work session on developing some best practices around not just creating the most cognitively accessible product possible, but also meaningfully engaging people with intellectual disabilities in the production of news. And so, you know, as as Amy was saying, I think it's really about kind of centering the folks who are most impacted by this not only in our practices, but in the development of those practices. And so that's one step that we're taking. But, you know, I do think that it's possible to make this cultural shift, there has to be a substantial investment in people with intellectual disabilities as audiences before we can convince anyone to make that cultural shift. But I absolutely think that there can be this cultural shift to make cognitively accessible news through means like plain language, or videos or adding images to news stories, all of these things make the news more accessible. But we have to as a journalistic culture, believe that those those audience members are worth sharing that information with and I think that's the big, the big turning point. I've
got maybe time for one last question. And I'm going to flip it over to Amy, as a journalist in working with people with intellectual or developmental disabilities, you will inevitably come up against their caregivers and parents who want to act in the best interest of their loved one or the person that they're taking care of, and will often fill the role of a gatekeeper. How do you negotiate some of those conversations and relationships? It's a really
good question. And I should disclose I have a daughter, Sophie, who is almost 20, she has Down syndrome, and she received services from the state of Arizona. So I'm always careful to disclose that, that you know, potential conflict Sophie has taught me maybe even more than Becca has over the years about exactly what what you're speaking to. It is really hard to figure out exactly how and where to give space when you're centering your coverage in the right way. Because this is it gets really difficult. When you look at the at the population of people with IDD, not everybody is able to say get on do a radio interview, or a TV interview or, or give, you know, a long quote. And sometimes even if somebody doesn't communicate in traditional ways, they still can't, you're still not going to get be able to get to them to the what what prompted a lot of my work is a situation at a care facility in Phoenix in late 2018, where a woman gave birth to a healthy baby boy, and she had has very significant disabilities, and is unable to, to really communicate much. So you know, from our, from our now our created situation, we you know, would we say? Well, we're not going to do that story, because we can't speak to that woman and get her response. Well, no, I mean, it's much more complicated than that. So that's already something that you have to think about. And then in thinking about that, it does make me realize that, that while parents and guardians can be gatekeepers in a negative way, you have to include them in these conversations, particularly if they are, if there's a legal guardian of the person you're covering, I mean, you have an obligation, you know, legally, and, and ethically to make sure they're included as well. So it, it can get super tricky. Sometimes if there's just somebody you're not going to be able to interview right, because the Guardian won't get permission, which happens a lot in Journalism, in general, but it's been a real education process, even to let some parents great parents know, you can step back and let your kid express themselves, you know, they, they can share their opinion as well. And it's a constant push pill pull for me as a journalist and a parent, to keep that focus on people with with ID and to keep that focus on Sophie and you know, in our home life, and as she moves into a role as a self advocate, to to, you know, to step back and give her space to have her own voice but be there as a support as well because it's just not simple enough to say Sophie deserves to say whatever she wants, and, you know, and, and I as her parent don't I mean, realistically, I'm involved in a lot of things, you know, that where I can where I can add context. So that was a complicated answer to it a complicate Question. Well, I
know we've just scratched the surface of this conversation today. But Becca and Amy, we are out of time. Thank you so much for speaking to me today.
Thank you for having us. And we hope you'll check out more of our work at plain truth. project.org Rebecca
monta Leon and Amy Silverman talking about ableism intellectual disabilities and making journalism more inclusive. I hope you will check out that website we have got to run. I've been your host Shweta Gupta and my team today has been Ted Cooper who is our videographer Mark Afflalo, who's our technical producer, Orion delahanty, who is the coordinator for podcasts at AMI audio Andy Frank, the manager at AMI audio. If you'd like to provide your feedback, you can write to us feedback@ami.ca Or find us on Twitter at AMI audio use the hashtag pulse AMI or give us a call at 1-866-509-4545 That's 1-866-509-4545 And don't forget to leave your permission to play the audio on the program. Thanks for listening. I've been your host Joy they got to take care and enjoy the rest of your day.
