Making Journalism Accessible

Joeita Gupta:
I'm Joeita 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 Supercrips 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 Joeita Gupta and I'm joining you as I always do, from the Accessible Media Studios in Toronto. My hair is in a bun today, as it is on most of days when I go out to record and I'm wearing my purple sweater. It's got about three-fourth length sleeves, V-neck and it's in a dark purple.
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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 Monteleone, who is assistant professor in disability and technology at the University of Toledo. They, along with Beena Raghavendran, 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. Wow, that's quite a mouthful. But let me first welcome in Amy Silverman and Rebecca Monteleone. Hello to both of you and welcome to the program. Thanks for speaking to me today.

Amy Silverman:
Thank you for having us.

Rebecca Monteleone:
Thank you.

Joeita Gupta:
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?

Rebecca Monteleone:
Well, so I actually think that the history of this project, it actually might be better if Amy gives us the context and then I can tell you about where we are now in the research part of it. So I might pass it over to Amy for the history.

Amy Silverman:
Sure. Well, we all know what happened in 2020. I had a really interesting journalism year planned. I did a local reporting network project with ProPublica and the Arizona Daily Star, which is the daily newspaper in Tucson, Arizona, 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 actually the case.
And so I was all ready to dive in and I had 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 really the best way to get to people's stories in a meaningful way, and which sounds kind of obvious, but of course by March of that year we were not going outside, let alone meeting people whose health might be more vulnerable than the average person.
So I talked to the folks at ProPublica and Beena 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 were kind of in the early stages of thinking about it. And so as a way of reaching out to the audience and getting... ProPublica really likes to do that as a way to build sources and to get interest, we did the storytelling project. So Becca was already part of our team. And then as the pandemic continued and we realized again that we were not going to be able to meet with people in person, we thought again, 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 my guru on all of this and knows so much and has taught me so much. And she said, "Well, yeah, there's this whole plain language thing." I had not really known about it. I kind of thought of it as sort of dumbing things down. And then I also thought in journalism, we should really be speaking plainly and clearly no matter what we're doing. And I remember in these early discussions about doing these translations, I said to somebody, "Can't I just not use words like ephemeral and we'll be good?" And of course that's not the case, as Becca will explain, I'm sure. And so 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 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 re-Tweets from fancy journalists and the articles. 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.

Rebecca Monteleone:
I'll just follow up on that if that's all right. Because I think as Amy describes, 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 community access, which we talk about in the article, as well as plain language as a mode of cognitive access to the story itself. We were kind of building these tools as we were implementing them. And 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?

Joeita Gupta:
Rebecca, how much scholarly interest is there in people with intellectual disabilities, not just sort of as being the subject of news 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 plain language and deal with some of those issues around cognitive accessibility?

Rebecca Monteleone:
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. So I think 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 materials. And in the UK there is an organization that does something called Easy News where they translate the top news stories into an easier-to-read format.
But there's almost no scholarly work on this to see if these materials are actually getting into the hands of the people who want and need them, or if the way in which they are being created and used is the best way to do it for the end user. And so that's where we've kind of developed this new pathway into doing some additional now qualitative research in this space to really figure out, we need a foundation here before we determine what the best practices are.

Amy Silverman:
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. Just the most basic questions. We learned some stuff that was pretty surprising and we kind of thought we knew everything.

Joeita Gupta:
That's really interesting because one gets the impression, Amy, that journalists are very busy. They're always running around chasing stories. They have deadlines to meet. When you tried to have conversations about this with editors 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?

Amy Silverman:
Well, we're not working with a news organization on this. We're doing it on our own. And we haven't really, 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 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 done them for them and for other organizations, other media outlets as well. It's not going to happen on a whole scale level. Unfortunately, I mean just the resources are tight and 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 say on daily news, breaking news scale. That would be hard.

Rebecca Monteleone:
We did have to pitch this idea to ProPublica in the beginning, too. I mean, 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 to ProPublica's credit, they were willing to engage. There was extra coordination, there was extra time, there was 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 there is-

Amy Silverman:
Right, they had to lawyer it.

Joeita Gupta:
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, Amy, and then it's transcribed if you will, or translated into plain language, that of course done by Becca. So maybe if you have a few minutes, Becca 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 why it sounds so different?

Rebecca Monteleone:
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 healthcare. Elements designed to allow a person to live as independently as possible. People who applied for services describe 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.

Joeita Gupta:
That's fantastic because you're giving out the same information, but you're just writing it differently. Simple sentences and just clear language. It's really fascinating to see how much of a difference there is and how far it goes in 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 as journalists about this community?

Amy Silverman:
Thinking about plain language and working on this research project has changed the way I think about this journalism around disability tremendously. Typically, when we cover disability, when we cover a lot of things as journalists, we are either telling a horror story, this is just this horrible thing that happened to someone, or we're telling this incredibly positive story about the water boy on the basketball team who has Down Syndrome, 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. Except me 'cause I don't like those kinds of stories because 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, it just... In centring 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 ways we cover everyone else. 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. We still need to have, unfortunately, we still need to have investigative work that would be called horror stories. We can't stop uncovering that kind of thing. But it does make me think about the way that we approach telling those stories differently.

Joeita Gupta:
Rebecca, what do you think needs to happen here? I mean, I know you haven't really had a chance 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? To your mind, is this something that we could do in the context of the 24-hour news cycle or 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?

Rebecca Monteleone:
Yeah, so before I answer that question, I just want to follow up 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 their 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 a post to show us off. I'm a human being with feelings."
And like Amy says, it seems so obvious, but that's the fight, right? That's the uphill battle because there are so many misconceptions and stereotypes about people with intellectual disabilities. But to your second point about how we might now go and engage with journalists meaningfully about 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, as Amy was saying, I think it's really about kind of centring 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 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 audience members are worth sharing that information with. And I think that's the big turning point

Joeita Gupta:
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?

Amy Silverman:
That's a really good question, and I should disclose I have a daughter, Sophie, who is almost 20. She has Down syndrome and she receives services from the state of Arizona. So I'm always careful to disclose that potential conflict. Sophie has taught me maybe even more than Becca has over the years about exactly what you're speaking to.
It is really hard to figure out exactly how and where to give space when you are centring your coverage in the right way, because it gets really difficult when you look at the population of people with IDD, not everybody is able to say, do a radio interview or a TV interview or give a long quote. And sometimes even if somebody doesn't communicate in traditional ways, you're still not going to be able to get to them. 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 has very significant disabilities and is unable to really communicate much.
So from our now created situation, 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're the legal guardian of the person you're covering. I mean, you have an obligation legally and ethically to make sure they're included as well.
So it can get super tricky. Sometimes there's just somebody you're not going to be able to interview because the guardian won't give 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 themself. They can share their opinion as well."
And it's a constant push-pull for me as a journalist and a parent to keep that focus on people with ID and to keep that focus on Sophie and in our home life. And as she moves into a role as a self-advocate, 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 I as her parent don't." I mean realistically I'm involved in a lot of things where I can add context. So that was a complicated answer to a complicated question.

Joeita Gupta:
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.

Amy Silverman:
Thank you for having us.

Rebecca Monteleone:
And we hope you'll check out more of our work at plaintruthproject.org.

Joeita Gupta:
Rebecca Monteleone 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, Joeita Gupta, and my team today has been Ted Cooper, who is our videographer, Mark Aflalo, who is our technical producer, Ryan Delehanty, who is the coordinator of our podcast at AMI Audio. Andy Frank, the manager at AMI-audio.
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