Redefining Representation in Disability News

Discover the captivating journey of Peter Torres-Fremlin, the visionary behind Disability Debrief, as he reveals how a platform dedicated to disability reporting came to be. Through his experiences with international organizations and his commitment to amplifying voices from the global south, Peter takes us on a tour of the crucial role investigative journalism plays in the disability sector. Unravel the challenges of navigating an overloaded information landscape and the transformative potential of AI in shaping the future of journalism.

Explore the profound questions surrounding disability data accuracy and the importance of transparency and accountability within the community. Peter and Antonio engage in a thought-provoking discussion on the reliability of widely cited statistics, such as the World Health Organization's 15% figure, and consider the implications of data on public policy. By examining the global adoption and debates surrounding methodologies like the Washington Group questions, we shed light on how accurate data can influence societal understanding and decision-making processes.

Finally, we confront the complexities of disability representation in media, emphasizing the need for both specialized and inclusive reporting. By addressing issues like media misrepresentation and the importance of dedicated spaces for the disability community, we underscore the power of resources like Disability Debrief in equipping advocates and professionals with trusted information. Join us as we advocate for improved quality in mainstream media while fostering environments where voices from the disability community can thrive and lead the narrative.

Chapters

• 0:01 Investigative Reporting in Disability Sector
• 9:55 Challenges in Disability Sector Data
• 15:48 Global Perspectives on Disability Data
• 29:02 Disability Reporting

Transcript

Neil Milliken: 0:01

Hello and welcome to Acces Chat. I'm delighted that we're joined today by Peter Torres-Fremlin, who is an author and is the brains behind Disability Debrief, which really covers disability-related topics. Perfect for us here on Access Chat because aligned with what we do. So, peter, welcome. Please tell us a little bit more about the work that you're doing on disability debrief and the sort of investigative work and so on that you're covering right now, because the disability world is complex, lots of issues there and quite often people feel a little reticent to maybe cover those. And, yeah, if you could also give us a bit about your background and how you came to be reporting in this space as well, that'd be great. Thank you.

Peter Torres : 0:59

Hi, neil, really great to be here with you. Hi, deborah Antonio, yeah, I'm a disabled guy in the UK, which is how I was born, as Deborah knows. I then did a lot of my career abroad. I was based in Bangladesh and Switzerland briefly, and then Egypt, and I was working with United Nations agencies and international organizations to on disability inclusion, furthering the rights of disabled people, particularly in employment.

Peter Torres : 1:35

Um, and a few years ago I just sort of saw this like exactly this um issue. You kind of mentioned this level of complexity in the disability space, this level of how quickly things were changing. Um, a lot of that's kind of good news in the, all the initiatives that were going on, this new popularity um, a lot of it was bad news as as well in terms of how disabled people were being hit by um, by the pandemic as it came for, for instance, um. I started disability debrief as a resource for colleagues to help keep up with that news. I was curating, I was curating the resources that were there, and then kind of one thing leads to another, you're curating and then you're doing a bit of analysis and then you're doing a bit of reporting and then and then people started calling me a journalist and I'm like I'm a what now? And then it became it's. It sort of became that.

Peter Torres : 2:35

So there's a few elements to disability debrief today. There's still that curation of news. I think I've sort of gathered disability news from over 150 countries, so it's really a kind of unparalleled uh resource. I've also um been able to commission reporting from around the world. So as I've curated news, I've seen the gaps. I've seen, say, particularly like we don't hear directly from disabled people in global south countries as much as we should.

Peter Torres : 3:04

So I've gone out of my way to mentor and commission authors from those countries to to bring them in and I've also really tried to be a space for reflection for people working on disability, inclusion, for how we're working, so that for for a while was um a kind of in a thinking together sense. And then recently I started some investigative pieces to bring more transparency and accountability to the way we work and to make sure that we're kind of holding ourselves to the highest standards to making sure that different people know what is going on in some of the most important initiatives. They are happy to get into that. But that's a kind of overview. Neil, you said before the call there's just sort of too much information to keep on top of. I think there's definitely a problem we all have we're overloaded with information, and Disability Debrief is kind of my contribution to helping readers navigate that and make sense of disability in a changing world.

Neil Milliken: 4:16

So thank you, and I've subscribed. So I think that sometimes the digests and the newsletters and so on actually can be useful. But I think the information overload is a real thing for everyone and it's certainly not stopping. So I know Debra's got a question, so I'll hand over to Debra.

Debra Ruh: 4:42

Well, and I would just say, um, right, in line with what you're saying, neil, the reality is well, now we have ai, so do we even need reporters? Do we even need? I'm being sarcastic here, but I remember when ai first was even though it's sort of just come out still, but still at the beginning um, we saw brands, we saw marketing teams get let go, we saw content providers get let go, but I also think we realized pretty quickly as a society, pretty quickly, that wasn't the way to do it. That wasn't the way to do it. So I've known about your work, peter. You and I have been friends many, many years and I do know about your amazing work all over the world, and I've always been very grateful that you've been focused on the global south, because what I see, especially as somebody that's a westerner myself, is that I just see people continuing to be left out in record numbers. I see things happening, that there's a lot of reveals happening right now, not just in our space, but all over the world, and I think there is a real need to talk about this stuff, not name names. I don't want to talk about individuals at all. We don't want to embarrass human beings but I think that your work is very important, and one reason why I wanted you to come on is because we have seen other investigative reporters and there's some really powerful content that comes out from their work, and I'm grateful for it.

Debra Ruh: 6:09

But at the same time, somebody once used a term flaming advocates to me and they said you know, if you just kill everybody along the way, right? So I think there's a way to do it that's more thoughtful. And also, these things are so complicated to try to blame one person oh, that executive, that fund. It's ridiculous. These are so nuanced conversations, and I know that you wrote about one theme. You wrote up, for example, the IDA, but you've written about it three different times. It is such a complex topic, and that particular topic is not just about the IDA, that's about our entire infrastructure, and so one thing that I like about your work, and why I always take the time to read it and pass it on, is because, well, in the first place, you've been in the trenches for so long. You understand what's happening. A lot of us understand things, even though we might not have all the details, and so I was just wondering why you think your voice is having such success right now, when all of these nuances that I just mentioned are happening.

Peter Torres : 7:23

Yeah, there's kind of I I guess a few things to navigate, navigate here. I think there's definitely a place for flaming advocates. Um, that's, that's definitely part, that's definitely part of the system I am. I'm I'm sort of, uh, I'm flaming in a different way. I'm kind of more of a slow, slow, slow burn.

Peter Torres : 7:44

Um, I guess one of the ways I've been trying to position myself is as a critical friend, writing from within a community, and so this is quite a hard line to balance, like how you, these people are uh in working on disability international, internationally, are my colleagues, they're my friends. Um, some of them are funding, funding my work, uh, others, others are supporting this work in in in different ways and I want to sort of own own that positionality right. So this is also one of the ways that that, that um a report, is different from ai. I'm writing from places of sort of lived experience and being where I am in the different senses that, that is, with the communities. I'm connected to the languages that I speak, but also this privilege of being in the global north and a male, cis, white, disabled person. You're kind of particularly referring to this uh reporting, is it on the international disability alliance, deborah? For people that don't know it. It's the representative body of disabled people in the united nations system and beyond, so it's a really important uh for the disability movement. It's what represents disabled people to governments in the international system and it is the voice of disabled people, so it's meant to be run sort of for and by disabled people.

Peter Torres : 9:19

There was in the administration of it there was a bit of a sort of contratomp that led to an investigation commissioned by one of its donors and basically my recent reporting took that investigation made the results public that they hadn't been made public before. It asked the people involved what they thought about it, whether they agreed with it, whether they didn't. It brought out sides of the investigation that hadn't been present and I sort of I took a view on the parts of the response that I welcomed and the parts that I didn't. I think this is kind of important for a few reasons. I think from the disability community we ask a lot of other people to change. We need to set high standards for ourselves before we ask others to change. We need to behave seriously to be taken seriously. I am also a big believer in transparency and accountability and a more democratic approach, and I think transparency is a basis for more democratic exchange. It's for more equal participation and is essential when we think about inclusion.

Peter Torres : 10:38

Right is going on and your sort of disadvantage in terms of power, um, it needs to be there. So that's, that's the kind of the role that I found I found myself in was that I was getting. I was getting information. I wanted to um address it in a way that um did justice to the gravity of what happened, but respect to to the colleagues and friends that directly and indirectly involved. So one difference that I took from sort of I used some of the techniques of journalism, like the balanced and fair reporting, but I also took sort of techniques from being a colleague, like I let people know oh, I'm starting this reporting, this is how I'm going to do it.

Peter Torres : 11:25

So normally, if you're doing an investigative report, you would do all your reporting and then go to your main target, like a week before. And is that? By the way, mate got some questions for you, but I didn't do that. I said to. I said either from the beginning I'm reporting this, I'd like to talk to you, I'm going to be asking x, y and and Z as well, so that I really kind of see that I'm still it's shifting a bit.

Peter Torres : 11:49

I'm more of a reporter now, but I mean we're all colleagues in the sector and somehow we need to use these relationships, yeah, to be transparent, rather than relationships that sort of turn things into just like gossip networks, uh, that kind of oh, because we're their friends, we can't say this. And I wanted to like give the tools that we can talk about these challenges. And the response from readers, which has been very positive, has been to say well, these are challenges. And the disability organizations. I know at different levels that there's leadership is kind of locked on, it's not, it's not renewing. Um, we're having a balance like how do you balance like professionalization and sort of a grassroots authenticity. Are they in contrast, are they not? How do you balance the role of donors? So those issues are of really global importance to how we work and then particularly Like how we kind of operationalize this idea of nothing about us without us, right, what organizations and institutions does that come through?

Debra Ruh: 12:54

I know that Antonio has a question, but as I have read all three of the reports and I know a lot about the topic, but I like how you brought up things like and I say this as somebody that probably falls into this category in that they have a board that's not really qualified to do the job that we're asking them to do. You know things like that. I mean the nuances is not, and funders are. Sometimes they have a lot of power over us. You hold in the money, you have a lot of power, and that power is not always used for good. So it was just. I found it fascinating the nuances you went to. But let me allow Antonio, the microphone. Antonio.

Antonio Santos: 13:38

Yeah, thank you, deborah. I was listening to Peter, also listening carefully to the introduction and to some of the work that he's doing, and particularly that you mentioned that you have done a lot of work in the Global South. One of the topics that we have talked in Access Chat and a kind of a hot topic is about number of people with disabilities. Countries report the numbers differently. Water organization comes up with with the number that becomes a reference to everyone to use, from analyst organizations to everyone is using that number that we know. I would like to know from your research, how do you see the current data and numbers that we have on disability and that, if you find them accurate, because I don't feel that they are accurate. But how can we evolve? And sometimes the numbers that we have give a false sense. Okay, here are they, they are this cap and now we need to address, and I found that sometimes these numbers can be very problematic.

Peter Torres : 14:53

Yeah, there's sort of a question kind of at the heart of a lot. I think many of you might have heard the 15% or 16% figure of the world's population. I actually have an article that speaks directly to this, that I spoke with a statistician, jennifer Maddans, though, to really kind of get to the bottom of where this thing comes from, so I can link it for readers to know more. The kind of long, long and short story is the 15% estimate that we use is essentially a bit of a guesstimate from the World Health Organization.

Peter Torres : 15:31

It's a kind of like statistical guesstimate, but basically like they did a bunch of modeling and like, looked like, squinted at some surveys and then came out with a number that sort of really sounded great and that we could all. We could all get behind. Alongside this in in parallel, there is an increasingly accepted international methodology called the washington group questions on disability that's being used. I think it's maybe close to 100 uh countries using that. Um, it's got a specific set of questions. It doesn't, for instance, like just for viewers to know, like it doesn't ask people like do you have a disability? As if you just ask that. It's not going to be a very accurate answer, given the diversity of disability experiences and people don't. People don't label them. However, as, as also US audience might know that the application of that in the US was talked about earlier this year and then rejected by the US disability advocates that did not approve of using the, the international framework and methodology in the US, and I think then the US Census Bureau is adjusting that. So it is like you're saying it's a hot topic. In the case of the US, the numbers were higher and there were the concerns that the adoption of this new set of questions would be lower. And there was also this concern. Well, a lot of us are kind of politically identifying as disabled and that's not being measured by these questions that don't use the word you, uh, a number that isn't um, I'm not sure, sort of uh, sure, kind of what would, um, what would make sense as a number, like it's given, like what, what you need the number for then determines what kind of number you you want. So, for instance, if you're doing general advocacy, the 15 is quite a good number because it comes from a very reputable source. It's been, it's been standard, standard for a few years and it gives you a rule of thumb that like, oh, one in, uh, one in six or seven people, um, have have some form of a disability and that's the sort of rough, rough, rough ballpark.

Peter Torres : 18:09

If you wanted a different set of programs or wanted to really drill down or refer to a sort of national survey, then you would really yeah, you would really need to go in more, in more detail. I, I personally I am not so hung up on on numbers. I'm sort of interested in people and the different experiences and the challenges that they go through and I'm kind of focused. Those are different forms of data, right, the kind of more qualitative, more qualitative data or sort of quantitative data that's tied much closer to specific, uh, specific issues, and I kind of navigate, uh, navigate like that, um, but I'm not, I'm not doing an advocacy where I need to get a policy maker's attention, uh, that they should care about this issue. When I did that, I I would, I'd use the 15 number for sure and say, look, it's who, uh, it's what more reputable thing could you want? Right, but obviously afterwards I'm going to be like, well, I mean, it could be more reputable, couldn't it?

Neil Milliken: 19:19

Maybe.

Neil Milliken: 19:22

So I think whichever set of numbers we use, they're big.

Neil Milliken: 19:26

I think maybe the concern is sometimes there's a worry that we're overstating. I think maybe the concern is sometimes there's a worry that we're overstating, and I think that the worry comes not so much with the size of the population that are impacted by disability or long-term health conditions, but sometimes when we're talking about market statistics and the finances around disability, there is a lack of rigor when it comes to how these numbers are arrived at and really, you know, a lack of sort of depth into the research when it comes to arriving at these numbers. So there's a feeling that there's sort of inflation because people want to get the point across, and I think that that can have a somewhat damaging effect. I think that the numbers are large, you know, whether you say it's, you know, 15% or it's the 26% of UK women that come up in the Office of National Statistics' latest stats, or the 2 billion people that are supposed to have a visual impairment, so you know, it almost doesn't matter, the numbers are so large it's a really significant part of society, society.

Neil Milliken: 20:47

Let's just please, effing, get on and try and make a difference, because I think we can be a bit too hung up on it, but it happens. You know, I, whenever I meet a new senior leader we've been through a few CEOs in my organization over the last few years and whenever I get to meet them for the first time, they ask well, how many of our people? And of course, you go I don't know, because they probably won't tell you, because there are all of these sort of systemic issues and you can see them sort of almost glazing over. They want the easy number. All of these sort of systemic issues, and you can see them sort of almost glazing over. They want the easy number. You know, when you get a good one, they listen to you and go oh yeah, this is quite complex. Okay, I understand, I'm willing to learn more, you know so I mean. So numbers do definitely play a role, but maybe more than they should play a role but maybe more than they should.

Antonio Santos: 21:52

But, neil, I can give you a kind of a practical example on that is that on the last census in Portugal they changed the questions on the topic of disability and suddenly a huge number of people, comparative with the previous census, no longer exist. So suddenly people with disabilities have disappeared and this has impact on public policy. Politicians make regulation, make supports, so that impacts. A simple question end up having impact on public policy. I agree.

Neil Milliken: 22:31

So I mean, I think that this is where the Washington Group questions and the standardization around Washington Group questions is a sensible thing. Then hopefully you don't get these incredible fluctuations in the representation of the population which then influence funding decisions and policy decisions. Deborah, I know you had a question.

Debra Ruh: 22:59

Well, I think this is very interesting, this conversation. But, peter, I mean, just as we're having these conversations, things are very complicated, especially if you start talking about it from a global scale. So you know what's next for Disability Debrief.

Peter Torres : 23:19

Yeah, no, thank you. It's a kind of evolving project made with the community that reads it. I've been really happy this year to get a broader range of writers alongside me. I've had pieces from Yemen, from Indonesia, from Belgium. I'm really proud to have these sort of brilliant writers alongside me. I want to keep on holding that space where we find new ways to tell stories about disabled people.

Peter Torres : 23:58

One of the key motivations for me under this is that working on disability policy I did not find the way we're talking about disability matched my own lived experience and I think that's a really creative gap and I really want to sort of lean into that. Lean into that gap to be honest and learn from the policy and activism that's there, but also to find creative new ways to write about it. So in my own life I've been sort of using uh spoken word poetry as a tool to do that. I put um some of that on the debrief earlier in a poem called fall with me, which didn't even mention the word disability, but it was a kind of uh autobiography of falling over uh as as a child and that that um, I know that that can uh reach people and communicate issues and, in a way, that sort of sticking to our greatest hits, um is is very useful in the context that we're using them, but doesn't um doesn't kind of get to that human side that we're all sort of trying to, trying to figure this out and the and the complexity of life. So I'm I'm pushing contributors to do the same. I really want to grow in that direction.

Peter Torres : 25:18

I'm also sort of now that I'm sort of accidentally doing disability media that's kind of what it came from and making this media for our community. I really see the need for more um, more investment in our communications and media. So obviously, like um, a part of me is then arguing people make that investment in me, but I definitely it should not just be me. Like we need to uh, resource people that share news, help us make sense of the news, report on the news. Again, this is the fundamental to to democratic, democratic operating we this is what we kind of we would see at the level of society level that, look, we need a media.

Peter Torres : 26:05

The disability community also needs media makers for for ourselves and and to get our, to get our message outside. So I'm looking how to collaborate with other people making disability media. We're all a bit sort of separated and isolated and figuring out how we get, how we're doing it. So I want to kind of want to connect and really look to how we strengthen that case, how we, how we send that message to funders that you shouldn't just be looking at programs, you should be looking at the infrastructure that will continue to get the, the information and knowledge to the people that can use it, right, so that's, um, that's a kind of area, area for future and, deborah, you know, you know how is the world keeps uh coming up with interesting plot twists, and the interesting plot twists going on affect disabled people quite intensely.

Peter Torres : 27:02

Disability is also like an avenue through which to say, like, explore, uh, how is ageism and ableism impacting the US, the US presidential election, for example? How are disabled people's experience illustrating what is happening in the climate crisis, for example? Right, this is kind of what I call a sort of disability lens and I think that that is that's a kind of constant uh, a constant thing to say stay, stay on top of and be be responding to. Sadly, um, I never sort of intended this, but then a lot of my work has been about disability and conflict, um in in different different areas from from ukraine, israel and palestine, sudan, uh, and it's it's very painful.

Peter Torres : 27:51

It's very painful reporting it's very painful subjects. But this I think it's kind of important, both because it speaks to really, really sort of critical populations and critical issues, but for also people to understand. Look, there are people uh um for want of a better phrase underneath uh, underneath the bombs that we we hear about Um and we need to understand. We need to understand the situation. It throws a new light. So I mean, it's there's, there's covering the news.

Antonio Santos: 28:23

Uh, there's a lot of tough stuff as well as um learning from the brilliant sort of uh activists that are making a new world and listening to people find, find their power and telling their story in their own voice but when I I follow multiple sources online like many of you, and there are a few entities like Bloomberg, reuters, associated Press, who somehow dominate the distribution of news around the world, how could them do a better job reporting on disability? How would you do see connecting your work with theirs? How can we improve that type of reporting? Because sometimes, even when you, when you go to the filters that they use on their apps and systems, it's very confusing the way how they frame disability, how they use the keywords. So sometimes when you are, you believe you are using the right keyword, you end up with news that have nothing to do with disability but show up on those filters. So how do we improve?

Peter Torres : 29:31

yeah, antonio, you're totally right. Mainstream media is still quite hit and miss on disability and the misses are quite serious because they get to quite, they get quite a few people. There is, I would say, there's kind of quite, there's good trends and that they're increasingly reporters with disabilities reporting on on disability issues. So I think there's a lot more good stuff out there. But I mean, even when newspapers have that asset, they still might put out a really flagship uh editorial or sort of like. For instance, the Economist did a cover showing a walker like a Zimmer frame and say underneath it they said no way to run a country and that was the way they were referring to concerns over President Biden. It's just like absolutely ableist and ageist metaphor and it's a grotesque use of assistive technology. So I think that sort of speaks to where and like to get a cover on the Economist that's been approved by a lot of people, right, a lot of very powerful people. So I think that sort of is an example of where, like, there's still a massive way to go.

Peter Torres : 30:47

I'm going to give a sort of a slightly, um, perhaps dissatisfying answer on this.

Peter Torres : 30:53

I am not fighting that battle now.

Peter Torres : 30:56

I I am not going to justify to editors that our story is worth telling, that disabled people are worth writing about, that I am writing for a community that believes that and a community curious in finding out what it looks like.

Peter Torres : 31:13

So I take my position, which is I am making media for the disability community and the disability curious, seriously. I think we need a protected space. That's our space, that we can find the best stories for us, not thinking about how I justify this to an editor or how I make this worthwhile for the general population, right. So I've got quite a radical stance on that. Obviously, it is very important that then people like your question absolutely important like and as people are like tackling mainstream media and making those arguments with editors that don't want to know, and and shifting it and in some countries you can kind of see really sort of exciting shifts in public discourse, um, but I think we kind of need to need to like have have that separation as well and have a media for us by us, uh, and that's that's at the moment. That's what I'm focusing on, okay so.

Neil Milliken: 32:16

So I I think that the the most definitely is a need for well-informed, connected um writing the media, written by the community for the community. My concern about only doing that is that we live in our own bubble and no one else gives a toss about us. I almost said poop then, and so I think there's a need for both. Right, I think the mainstreaming of disability in the media is really important and disability in mainstream media as well as quality reporting. I think that, like you, I think there's been some progress, certainly in some countries.

Neil Milliken: 33:09

I think that you know think there's been some progress, certainly in some countries. I think that you know it's varied. If you look in in the UK, there's an awful lot of representation now in disabled presenters in mainstream roles that are just doing mainstream, presenting jobs and existing, which is great because they're a mainstream presenter. You know it's showing society that disability is just part of the makeup of life on the planet. Right, and that is great. But at the same time, it's not the same as they're not talking and contributing about a particular issue. So we need to do both of those things.

Peter Torres : 33:53

No, absolutely, and sort of. I guess one of the ways I see sort of my place in the theory of change is that I love that my work is read by people making change in their professional and personal lives, whether there's people working on sort of frontline organizations that are supporting disabled people in disasters, whether that's read by academics Among my audience are journalists that are doing precisely this work that you mentioned, neil, and sort of. I hope I can give them a resource that, for me, I quite like being in this position I can help get information to people making change, people also like yourselves, that are going to have the arguments with business leaders and need to have information, or people that need get asked by their colleagues, what about disability in this subject, and they have to kind of rapidly find out about that. I've got a reference for where they can find out about that. I've got tools that they can use to have those arguments. So that's kind of where I see my my place in the theory of change.

Peter Torres : 35:03

Um, at, at the moment, and I really um, yeah, like I mean so, so many people are waging really important fights and I want to make sure that they have a kind of easy source of good and trusted information that they can use, uh in in those fights and whether that's, like I say, professionally or in their personal lives. Right, because many of us are sort of figuring this out like how do I say this to a family member? I got a really moving comment from a reader that my poem about falling was something she thought about when she fell over the other day. And I said we need words to hold on to, right, like we need in the critical moments, in the personal lives as much as the professional lives.

Debra Ruh: 35:51

We also need our journalists and our investigative journalists and reporters to be part of our community, to have lived experiences as part of our community. Our voices do matter and there's a lot of really good resources out there. There's a lot of good content that's being put out there, but I just think the disability debrief is also really powerful. You know, it's just got such good reporting, such good research, good data, and it feels to me like it's being presented in a balanced way. I appreciated that, because it's easy to point fingers and say, oh, you are bad. Well, you know what the reality is. If you were in that same position, how would you have handled it with all of the? I think it's so important right now that we don't attack humans, because people have tried really, really hard to do the right thing in these ridiculous situations. So it's just really yeah, I appreciate disability brief, thank you, thank you.

Neil Milliken: 36:54

Excellent. Thank you for a great conversation. I look forward to continuing it on social media shortly. Once again, thank you, peter. Thank you also to Amazon and MyClearText for keeping us on air and keeping us accessible and captioned. Have a great time. Everybody Enjoy listening to this. Go read the disability debrief.