Cynthia Bennet_mixdown.mp3: Audio automatically transcribed by Sonix

Cynthia Bennet_mixdown.mp3: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Speaker1:
And.

Speaker2:
Welcome to Radically, a podcast about technology, power, society and what it means to be human in the age of information. We are your co-hosts, Dylan and Jess.

Speaker3:
And in this episode, we

Speaker4:
Interviewed Dr.

Speaker5:
Cynthia Bennett about accessibility and designing for disability through justice oriented design.

Speaker2:
Cynthia Bennett is a postdoctoral researcher at Carnegie Mellon University's Human Computer Interaction Institute. Her research focuses on the intersection of power, disability, design and accessibility. Cynthia is the lived experiences and creativity of people with disabilities as starting points for developing accessible and justice oriented applications of technology. Cynthia is also a disabled scholar who is committed to raising participation of disabled people in academia and the tech industry.

Speaker5:
And for this episode, we wanted to give a special thanks and shout out to one of our previous guests on the show, Mary Morris, who introduced us to Cynthia and her work a little while ago. We are so excited to share this interview with Cynthia, with all of you.

Speaker2:
So we're on the line today with Cynthia Bennett. Cynthia, welcome to the show.

Speaker3:
Thanks for having me.

Speaker2:
Absolutely. And so we're going to get started on this conversation. We're going to begin at the beginning, basically, and we're curious about your research and maybe even before your research, what got started, you down this research path in the first place?

Speaker3:
Yeah, thanks for asking. So I have an undergraduate degree in psychology and a lot of psychology students. Grad school is just inevitable to get a license to practice or to do the research, psychological research, graduate school if necessary. So I started doing research as an undergrad, but I wasn't thinking about human computer interaction or technology or accessibility. I started thinking about HCI and accessibility when I got a job after my undergraduate degree and I worked in a computer science department at the University of Washington specifically. And I was hired as a research assistant to help students working in accessibility to run user studies for their graduate school project. So I knew about accessibility from an end user perspective because I'm blind and I used accessibility features and access technologies all the time. And one of those technologies that I rely on is called a screen reader. And this kind of speaks out what is on a computer screen and screen reader. Users use keyboard commands and touch screen gestures. A more contemporary smartphone screen reader access uses like accessible forms of gestures to enable touch interaction. And so I was helping to run a user study in this accessibility research lab, and I was asked to use an Android phone with the participants in the study. The phone had a prototype that I would give the phone to a participant who came in to do the study and they would complete some tasks. And then the study would be finished and the participants in this study were blind.

Speaker3:
We were testing and accessibility feature that a student had invented and testing its feasibility. And so I was blind as a researcher and the participants were blind. And there is this bug in the app because, you know, it was a prototype. There is this bug where if somebody performed a gesture in a certain way, the whole phone would just shut down and we needed to power on the phone and like, open up the app and start over, start that particular trial over. And it was just something we knew happened. Well, unfortunately, at the time, this particular Android phone, the screen reader setting, could not actually be turned on by a blind person. And so when the phone powered back on after crashing, the screen reader on the phone was not on and I could not actually resume running the study with that participant unless I left the user study lab, ran around the building and found a sighted person who could turn the screen reader on for me. And then I would go back to the study room and finish running the study. And so this was kind of funny, like it was just funny kind of sometimes running around, like poking my head in an office would be like, hey, can you turn on the screen reader on this photo writing a study? But it started to get me thinking about what what are the ways that we think about accessibility and who do we expect to need accessibility features? And I started to think more deeply about this when I was reading other research papers and paying attention to research projects.

Speaker3:
And I started to realize that a lot of our focus in accessibility and disability and technology assumes that an end user is a person who needs accessibility features. But I was a researcher. I needed to be able to run studies. I needed to be able to analyze data. And so in this context, I was not only an end user, but I was also a researcher and a designer. And so that kind of set me on this path to nuance, accessibility research to think about what are the ways that technology and our design and research processes. How do they like figure disability as a life experience, like who do we expect to have disabilities? And so I've spent a lot of my career doing projects that challenge existing design and research processes and trying to kind of recover them by starting with the actual experiences of disabled people and our creative practices to say no. There's actually other ways of doing design that assume that maybe participants have disabilities, but maybe designers, maybe developers or professors have disabilities, too. We need to make sure this whole pipeline is accessible. So it's all right. That was a long story, but it's very it's a very poignant moment near the beginning of my career that just got me to think, I think, a little bit differently than the dominant focus of accessibility research.

Speaker4:
Yeah, well, it's also it's a great segue into one of the projects that you have been working on for a while now, which is titled Biographical Prototypes, and it centers storytelling and first hand accounts. And so could you start by just telling us what this project is?

Speaker3:
Yeah, thanks for that introduction. So with biographical prototypes, we try to position storytelling as a design method for fostering the listening by designers to disabled people and kind of positioning disabled people as the fashion areas of their own lived experiences and the designers in their own lives. And this activity, the way we ran it, is done kind of in a design workshop. And so, you know, there's there's different types of interventions. And this one is kind of like, well, we know that professional design will continue to exist in the design workshop or group activities are very common and well-loved ways of designing and gathering feedback. And so can we kind of appropriate that popular gathering or method and instead kind of turn the tables a little bit and say, OK, well, instead of professional designers being in charge, let's have disabled folks come in and use like the traditional art and design supplies to recount their own stories of designing things in their own life. So this project was launched by another aha moment I had in my career. So a long time ago, I started to realize, like accessibility research tends to assume that only end users have disabilities. And I know that's not true because I am a disabled researcher and designer. And so but sometimes things take years to grow and you need the language or you need examples for things to click into place. And so in two thousand eighteen, I read an opinion piece in the New York Times called We Are the Original Life Hackers. And this disabled design activist named Liz Jackson interviewed someone named Betsy Farber. Betsy Farber was married to someone named Sam Farber.

Speaker3:
And together they and some other people owned OKso Good Grip's, which is a popular brands of kitchen tools. Many of us, including myself, probably have of good Gribbs tools in our kitchens. And the tools are marketed to be comfortable to use that are very well known. And as I a an academic, I had attended a lot of lectures on universal design that make an argument that if we think about accessibility for people with disabilities, everybody benefits. And also good, Griff's was given as an example. So OKso good grip company has the story online that says, oh, this person named Sam Furber noticed that his wife Betsy had arthritis and so he designed kitchen tools that were more comfortable for her. And so this story was peddled as an argument like, hey, if you design for disability, then you might be able to build this incredible brand of products that everybody loves. And I don't just agree with that. But when Liz Jackson, the author of this We Are the original Life Hackers article, interviewed Betsy, she revealed a different perspective on that story that had not, to my knowledge, been widespread knowledge. So Betsy talked about how she actually had hacked up several prototypes for these kitchen tools just in her own life, like she was experiencing discomfort, trying to use kitchen shears and also trying to open jars. And so she actually was like taping stuff together and hacking stuff up together in her own home. And that creativity is not is not available. It was not widespread. And so what you kind of have more commonly are these like savior narratives where someone who is assumed to be nondisabled has this wonderful idea to develop a technology that saves a disabled person from some discomfort or fear that they have.

Speaker3:
And often those stories, from what I've learned, like from this interview with Betsy Barber and then during the biographical prototypes projects, a lot of these savior narratives leave out the fact that disabled people have been designing in their own lives and coming up with their own hacks. And so that's where I read this story. And I was like, oh, my God, I have been to these universal design lectures. I have been telling this okso good story. And I haven't been uplifting Betsy Farber for her contributions that were very much informed by her experience having arthritis. So we designed the team I worked with, designed these workshops to be able. To position disabled people coming into design situations, you know, whether they're researchers or designers like me or anyone from the public just coming in and starting off with the assumption that you have stories, you have probably tried to solve all the access barriers in your life and maybe you have some cool solutions that were great for you. Maybe there is things that are still problematic. And as designers, we can help like amplify that or provide resources or something like that. But it's a very different from what I perceive as the predominant paradigm that as a designer or technologies, I need to come in and save somebody with that's, you know, neglects all the work that they've done. So that's a little bit of information about that project.

Speaker2:
Yeah. Would you mind saying a bit more about the biographical prototypes themselves and then especially how they can be applied in a design context? Because sometimes design can be so much about like what that output is and like, how do we do things that are not necessarily storytelling? And so I'm curious about how the storytelling can possibly help designers who are more product focused.

Speaker3:
Yeah, so I see multiple possibilities. And in sharing these, I'll also share a lesson that we learn and something maybe that I would do differently in the future. So I first think at the very least, biographical prototypes or storytelling are a great way to get to know someone with the premise that, you know, you have stories, you have things to share with us, and we actually need to be listeners and learners. And so I think that's just like a courteous way to get to know someone. But what I think can also happen is if you go into a design encounter, you know, maybe you are a product focus, but if you go in with solutions already decided upon, you might really miss some pretty important things. You might be assuming that something is a problem that's not actually a problem. You might have an idea for a solution. And someone you know, disabled people who have that access barrier may have better ideas. And so I also think biographical prototypes are a great way to figure out what is actually a problem and what, you know, what types of solutions have people already come up with. And in a lot of cases, I think this can direct projects toward solving problems that are actually problems, not as assumed problems, and also kind of amplifying existing solutions rather than kind of reinventing the wheel that might not be necessary.

Speaker3:
And this can open up opportunities for, I think, stronger partnerships and greater recognition of disabled people's contributions. So if it's more about like how can we actually bring you on as a partner? And if you have a life hack that works really great and might help other disabled people with similar barriers, can we use our power as a design firm or as a company to help you amplify that solution and make it more widespread to people who need it? So those are some ways that I see it applying in in the real world, in design studios. One lesson that we learned was some of the participants were, well, they were all excited. And we me included, we were all excited to learn from each other. It was it was just a wonderful time to be like, wow, like how creative. That's awesome that you came up with that. And I even noticed some participants like getting ideas from each other and kind of deciding like, oh, I'll go home and try it out for myself. So it also fostered like community building and just skills sharing among people at the workshop.

Speaker3:
So it wasn't all this like top down designer in charge. It was actually kind of cool to see people make connections and give each other ideas. But the caveat was that some people were rightfully so frustrated that in celebrating their life hacks and creativity, we neglected acknowledging as much as we should have. We neglected acknowledging ableism like the structural ableism that necessitates these life hacks. So if the world was an accessible place and if we prioritized accessibility for people with disabilities, a lot of these life hacks would not be necessary. And so there is kind of this desire for nuance that like, yes, we want to be recognized and we want to celebrate our creativity. But we also need you as a. Miners understand that this is because of structural ableism, and you should not just be celebrating our successes, but also recognizing that the celebration comes from pain and we need structural accessibility needs to be fixed. So I think if I run these in future, I would definitely spend time kind of honoring more disability history and activism and recognizing that ableism is still very much part of our structure and kind of holding that in the same space along with that that celebration.

Speaker4:
Definitely. And something else that you and your authors mentioned in the paper was this tension between recognition and obligation. And this is something that I think both Dylan and I spoke with you in a previous meeting at before Synthia about which was this like weird balancing act that needs to happen where in order to design for accessibility and to not erase the voices of the people who these designs are being made for, we we need to bring in people with disabilities and we need to have more diverse design teams. But on that same thought, we also don't want to ask that disabled people be responsible entirely for designing a world that is accessible. And so how do you balance that own tension in your work, bringing people in without exploiting the labor and requiring that all the work that has to be done is is from people who are a part of the disabled community.

Speaker3:
Yeah, this is a great question, and I don't think I might have struck a balance at all. It's something I was thinking about. And so I'll just talk about the things that come to mind. I've been thinking about design, pedagogy and other like HCI pedagogy. That kind of set is like, OK, well, you shouldn't design for yourself. And I think about the ways that that assumes that the person sitting in that course is of a privileged, static identity. And so I want to think a little bit more how we can. Kind of introduced pedagogy and methods that teach them more about like we all bring something to design encounters and what might be helpful is really reflecting on like what am I bringing? What is appropriate to bring what? Like what in what ways do I need to step back? And the reason I mention this, it is a popular topic. There's a lot about reflection and reflexivity and engineering education that I see, but I don't think we've talked about a consequence that I've seen is what we don't have an expectation that everyone is designing for accessibility. All of a sudden, the few disabled folks who make it into tech or design are kind of expected to design for accessibility. And if we want to do other things or if we actually don't have an expertise like maybe a different disability or a different access barrier, like we're not automatically just qualified to design for that. So that didn't answer your question. But I think part of that answer, again, kind of addressing the whole pipeline is, you know, having greater expectations that designing for accessibility is a non-negotiable part of just being an ethical and good designer.

Speaker3:
And we all try to design for ourselves in some cases that can be really radical, like a disabled person designing something that works for them because in many, many other products have not worked for them. And in some ways that can also be inappropriate and even sometimes that could be disabled. People like making design decisions that can hurt other people because they're only thinking of their own access needs. So that's kind of one thing I'm thinking about. Another thing I'm thinking about is also how I need to lead by example. And so I am disabled and I try to make it clearer when I can that I need allies and nondisabled folks to step up, particularly in work settings where accessibility is not a common practice and to take on some of that labor. But there are ways that I have privilege and I need to do better by my colleagues as a white person and as this woman that I'm also thinking about how how can I take more responsibility? And I think sometimes that has led to some cross solidarity conversations where maybe colleagues or other people notice that maybe I'm starting to take up other perspectives and other commitments in my work that aren't just about accessibility, but maybe about racial justice or gender justice. And obviously, I am not the judge of whether I'm doing this correctly or well. But just to say that, I also think part of it is me looking inward to myself and trying to be an example of what it means to take into account things that don't particularly affect me because I am in a position of privilege but do greatly affect other people.

Speaker2:
I have a follow up. That may be an impossible question, actually, but just to just to pose it, because you're talking about this complex system and when we're talking about design or research, we're talking about like these multistakeholder spaces or these intersectionality is that we each carry and that we carry on our teams. And and I'm wondering, I guess, how how can we have, like, metrics of success in those spaces, like for you when you're doing the research that you're doing, how do you think about, like, what successful design can look like?

Speaker3:
Yeah, that's a tough one. I. I tend to look at who is amplifying the work and, you know, when a lot of my disabled friends and colleagues are amplifying something, I do trust it a little bit more. So I think I can metric of success is like, is the community voluntarily engaged and enthusiastic about the work? A couple of other ways I pitch this, and these aren't always like one hundred percent. That's just some things I look for. Like if I'm. Trying to assess whether someone is the safe person or not. I look for signs like, do they have disabled friends who, like, voluntarily hang out with them? Do they have disabled people in their life who are in the same or a higher position of power? Or do they have experience working for a disabled person, being like asked to do things by developers? And so those are I think are in terms of like when I look for people who to who to collaborate with, I look for those types of experiences and then for thinking about whether a design project is successful, I kind of look for the like, is the community voluntarily engaging and amplifying this work? And, you know, if they're not, there's a sign that maybe the project was more about a particular designer goal or design goal rather than positively impacting a community.

Speaker3:
Or it could speak to something about a power imbalance where that community hadn't told her heard. But yet again, these are just hard questions to answer, because often our institutes, whether it's tech companies or academia, are just set up, not in service of people. So it can feel a little bit like. You know, a shot in the dark, but sometimes you kind of scaling back, thinking about what might be a metric of success for a project is like, can I? Influence. You know something? Can I bring a different perspective to a meeting? Am I able to change a design decision by bringing that perspective? You know, in some cases that will be your metric of success if that's the power that you have, so that it can look like very different things depending on the situation.

Speaker4:
And as we talk about perspectives and bringing more perspectives into this design conversation, a lot of people tend to use perspective and representation synonymously. And so there's a big conversation right now in the tech industry about finding that representation in design, but then also in just the creation and deployment of these technologies. And you've actually done some work recently on representation, not necessarily in the design room, but actually for end users. And we just discovered recently that your paper, Atai twenty twenty one, that's the Human Computer Interaction Conference, got an honorable mention. It's titled, quote, It's complicated negotiating accessibility and misrepresentation and image descriptions of race, gender and disability. Could you tell us a little bit about the study that you did for this paper and some of your findings?

Speaker3:
Yeah, thanks for introducing the projects. So. I always say that a lot of my projects that I do are because I got angry and this was like no exception. So it was around like the summer of twenty nineteen. And I had been really fortunate to get to know some of the gender and researchers like Morgan Sherman and kids and learning like just being a learner and realizing, OK, people are being misclassified by A.I. systems. These mis classifications are replicating existing bias. So in the case of gender classification, systems tend to have to binary genders and completely no room for anyone who is a different gender or transgender. These were doing real harm. And so learning from these other scholars and also watching media coverage of like increasing amounts of racial injustice and immigration injustice and the types of surveillance that were happening and the way that machine learning. And I was powering that unjust surveillance, I was just kind of taking all this in. So meanwhile, around this same time is I'm an accessibility researcher and I'm always, you know, hearing about what's the newest thing. And applying machine learning to solve accessibility barriers is a really promising avenue, because often this can reduce the burden of developers or content creators of making every single thing accessible and accessible. You might be able to scale if it can be automated, and particularly by using machine learning. So I was hearing these two different tales and they didn't seem to be talking to each other.

Speaker3:
I was hearing that I was biased and perpetuating, perpetuating surveillance and misclassification of axes of like race and gender. And then I was hearing that it could be this really promising accessibilities solution and I was just starting to get really frustrated. There began to be some workshops on a lot of fairness and people with disabilities. And I'm really grateful that these conversations have have amplified and grown, but I haven't seen as much of a justice perspective. So, yes, there's research on how disabled folks can be misclassified by how a surveillance can really, like, do terrible things for disabled folks. We've seen some of the media around like the covid-19 pandemic and medical training resources away from disabled people because, you know, machine learning builds on societal kind of assumptions that disabled lives are not as valuable. But I hadn't seen, like, as much focus on, OK, well, if I can help remediate accessibility barriers, what about these problematic surveillance? How is that going to show up in these accessibility solutions? And does that mean we should be cautious? And I just I wasn't hearing anyone make an argument about, like the necessary ethics from like a disability specific perspective. So anyway, I just kind of the anger kind of grew over time. I felt like these conversations were happening. And so I endeavored like I was like, well, you know, I'm going to get a group of disabled folks and they're also going to be minorities, races and genders.

Speaker3:
And I want to know, what does it mean when you're at the Nexus when you could very much benefit by machine learning applied to relieve an access barrier, but when you're also one to one or more of the identities that are known to be harmed by a guy. So the way that this manifested specifically was an image description. So blind folks like we can't see images. So we rely on textual image descriptions. And again, like a lot of people don't write image descriptions, please write image descriptions. They're human written image descriptions are way, way better than automatic ones, but automatically generated or a generated images. Descriptions are proliferating. They can provide some information about an image. It's better than none. And so I wanted to to think about like, OK, well, is it OK if, you know, a lot of times things like race and gender and disability, like clues into someone's appearance, can add context or detail to an image description. And I wanted to know, like what? What are the ethics around machine learning, making these judgments and communicating know perceived race, gender or disability classifications of people and images to blind people. And like, what are the consequences if this is wrong? Like if someone is given an image description of of a gender and the person in the photo is actually a. For gender, like what's what's going on there, so we gathered a team of people who have expertise and accessibility, machine learning, social media access, raised critical race theory and gender justice.

Speaker3:
And we interviewed twenty five blind people and they were all they had to be blind. And they also had to either be a black indigenous or a person of color, or they had to be not cis gender. So either non binary or transgender or some other gender that was different from the one they were assigned at birth. And so we asked them about like their social media use an image description experiences, and we asked them how, like how they had been misrepresented both in image descriptions of of images of themselves and also just in the general public. We wanted to understand the impact of misrepresentation on our participants, and we wanted to understand in what context do you think it would be very valuable or in what context do you want to know, like race or gender or disability information about people that you encounter? And so the paper kind of talks about the different the different impacts of miss gendering and miss labels of race on our participants. And it talks about particular contexts when our black participants really, really would like to know this information. And the paper also talks about their thoughts on EHI describing race and gender. So kind of just in summary, like our our participants were had different impacts. Some of them were very, very hard by being in this gendered and they're risking misclassify it.

Speaker3:
Others had experiences where it wasn't a big deal. But in taking a kind of a justice lens, you know, just because it doesn't harm everyone, it doesn't mean that that doesn't poison us as technologies to act. So we kind of ultimately kind of caution the the use of A.I. to describe appearance of people and image descriptions because of the potential harm. Like we know that gender and race are misclassified. We also know that disability research on how disability is classified is not even really done to a level that we know what those classifications are, these classifications would be. And so kind of cautioning that image descriptions that are automated should not be describing this according to the potential harm that it could have based on our personal experiences. But we also talked about how, you know, in the case of human written image descriptions, there are contexts where this information is really, really helpful and important. And so, you know, a lot of people wanted to understand the appearance like race and gender representation of people, to understand representation in the media. They wanted to know, like, you know, reading conversations about lack of diversity in the media. A lot of our blind participants felt that they were assumed to be able to see and to know this information, and they needed more image descriptions. Another one was understanding where people are coming from when they're talking about identities on social media.

Speaker3:
This was a big problem where there would be a discussion where maybe someone would say, you know, only black people can comment on this status and blind participants feeling like they really couldn't participate in or moderate these types of discussions because they couldn't make a judgment about whether someone commenting was doing so appropriately, like whether they were a black person commenting or person of a different race kind of stepping outside their lane. So there was a lot of hesitancy to engage in these conversations in these particularly these protected spaces on social media meant to kind of foster these types of conversations on race and gender justice. So there was a few other contexts in the paper, but just kind of revealing a lot of tensions and questions around, like there need to be more image descriptions that convey appearance, information about identity characteristics that we that we care about. You know, in certain conversations, race and gender and disability really do matter. And our blind participants did not feel like they were getting access to this information to the degree that they needed to to be aware and conversant on kind of culturally relevant and culturally like contemporary understandings of race, gender and disability. And then I think the final thing I'll point out is there was a big difference between preferences for how image descriptions are composed as to whether some.

Speaker3:
What is known or not so is kind of across the board pursued, absolutely inappropriate to assume someone's gender or race or disabilities, but just by looking at a photo. And so they've kind of aligned with our recommendation that I shouldn't be assuming this information either if I can if someone can't confirm what the description will say about themselves. And so I'm kind of asking image describers to be really thoughtful and to maybe use, you know, writing more details about the person's clothing or hairstyle or maybe describing access technologies like if someone is holding a cane or has a service animal and you can tell that it's a service animal, maybe using those literal physical features of the image without like interpreting that upper level and saying, oh, a blind person or a woman or a man. In the case of a race specifically, there's a lot of. Efforts like to maybe describe in as like a substitute for race, but our participants also kind of brought up concerns of colorism and particularly the way skin is usually described, like using a lighter or darker language. And so we kind of posed that as a question in the paper that in particular, how to describe appearance without assuming race and without using maybe colourist or offensive language is still kind of a question. But that's was really left open at the end of our paper that we didn't feel super competent to make like a rigid recommendation.

Speaker3:
So that's that's just kind of a summary. But I think the take away for me, what I try to tell folks, accessability I researchers, is these people had had perspective. There are people who live at the intersections and can possibly benefit from EHI for accessibility, but they did not universally want it if it could do harm. And that, I think, is the message that I hope can amplify. Just recognizing that people are complicated. Just because something might help them with an access me does not mean that they don't care that it could possibly do harm. It doesn't mean that we shouldn't care that it could possibly do harm. In fact, I think that means we need to run toward that. And people living at these intersections of of identities in this case, again, where they can really benefit by having large amounts of image descriptions produced by thinking about the best way to compose those images, descriptions or do do it in a way that gives people more agency to opt in or opt out or to declare like how they can be described or when they they opt into being analyzed for image descriptions by. So I just I think it was kind of the take away that that I hope is just understanding that these conversations are more nuanced to them, like, oh, accessability. We can make it better. OK, fine, let's just do it and not think about the other ethnic.

Speaker2:
Well, obviously, we're a big fan of your work, we're also a big fan of the some of the collaborators that you've mentioned. You know, we've had Morgan on the show and and Oscar's on the show. And also we've got connected through you to you through through Mary Morris. And some of the topics that we've talked to them about have been about this justice perspective that you've mentioned. And I'm curious about from your perspective, how like whether you're an industry or academia doing research, how would you recommend to folks that you do that? Well, that you bring in a justice perspective in a way that's both sensitive and effective and ethical?

Speaker3:
Yeah. Thanks for asking. This is a hard question. I think the first thing I. And trying to remember myself is that I can read and go to events and. I can try to to be a justice oriented activist, but when you are being paid by universities and companies, you can't be the judge of whether you're doing this justice work well. And so I think that's where my first thing is setting up being in enough contact with people who are on the ground doing justice oriented organizing and who don't have, like, the bias of the the things of the universities and companies want out of us to to be held accountable and to be judging your work. And not that you're kind of the one that's like, oh, we did this justice oriented project. And I, I am an academic and I determined it was justice oriented. No, I don't think I can actually be the determinant of that. And then I guess the one thing we recommended in the image descriptions paper is, in my thinking, a justice oriented perspective leaves open the option that we have to be willing to say no. And toward that end, I proposed and in many others as well, in kind of like restorative justice. I know thinking about benefits and harms and so really trusting that we we not only can learn about potential benefits of technology when we talk to people, but we can also learn about their experiences and how the technology may kind of perpetuate harm. And so even just bringing in that nuance of a of a like analysis to your data or to your protocols, just even having conversations with people about how something might not be a good idea.

Speaker3:
I think it is a small step in the right direction, particularly if you're in a situation where, like, you know, doing totally community based work is not something that you have the support to do. Like I said, even just in typical user study methods, incorporating into your protocols, thinking about the ways that technology can do harm. And then another thing I think about, and I learned specifically from disability justice is again, kind of what I was mentioning earlier, how disabled folks sometimes were assumed to know everything about accessibility. But actually people have conflicting needs and this supersedes disability. But disability is an excellent example. And so kind of intentionally bringing people with very different needs and experiences and so that you realize maybe what some of those conflicts might be. And then you can kind of think about that from maybe different ways that the design would need to be customized or maybe even different. People need different solutions. Or maybe a solution isn't a good idea because it'll really help one group because, like, really, really bad conflict for another. So just intentionally. A lot of times we separate user groups based on a characteristic. And I would actually encourage that to find those conflicts, bringing people together who have different experiences. So those are just a couple tips. I don't know that they, like really embody justice, as I mentioned, and not I can't be the judge of that. But those are a couple of things that I'm thinking about. Trying to embrace more in my work is kind of running toward tensions and acknowledging the potential harms rather than just trying to like design more and more and more technology.

Speaker4:
Definitely. And Cynthia, for anybody listening to this who is interested in designing with that justice perspective or maybe utilizing some of the techniques that you have found some positive impact with through your own work, is there a best place for them to go to look at the work that you've done and to maybe get in contact with you?

Speaker3:
Yeah, and so I am not the best at updating my website, but it is that benefits the dot com. So my last name E and E t t c as in Cynthia Dotcom, but most of my work is on Twitter, like I said, my recent updates. So that's at CLB five five nine zero. And honestly, if you're interested in justice, the disability justice specifically, the first thing I would send you to, there's something called the Disability Justice Primeur. It's published by a performance project called Zins and Valid Research, the Disability Justice Primer. And it's like a how to guide, like how to organize an activist event that's accessible for people with severe disabilities. And you can pull a lot of great tips out of that and just integrate some of those very, very quickly into your practice. A lot of very grassroots methods. So that would be my first like. A five dollar handbook, and you're supporting a great organization that does justice oriented performance work, so the Disability Justice Primer would be my very first suggestion definitely.

Speaker4:
And we'll be sure to include that and all of the other amazing resources that you've shared with us throughout this interview in our show notes on our website. But for now, Cynthia, thank you so much for the work that you are doing in this space, the important work that you were doing. And thank you so much for coming on the show today to talk to us about all of this.

Speaker3:
Thanks so much for having me.

Speaker2:
We again want to thank Cynthia for joining us today and for this wonderful conversation, just what do you think?

Speaker5:
What do I think? I learned so much from this interview, and I know I say that about every single interview, but I really, really found the stories and especially the research projects that Cynthia has been working on, incredibly compelling. And I think the last case study that she explained to us with her recent paper at Ky. was probably one that sticking in my head the most right now. And when she was explaining this specific part of the study that is sticking with me is when she was explaining how some of the participants in this study were saying that they really need I fueled image descriptions and that they are really helpful in a lot of circumstances. But until the point when they cause harm and when I heard her say that, I was thinking in my head, it sort of feels like this catch 22. It's almost like you're damned if you do and you're damned if you don't like. We need more image descriptions because people aren't providing them at the the rate that we need at this point in time. But if we are going to use I fuel descriptions, there is harm to making inferences and assumptions about the things and particularly the people and identities that are trying to be described. And so I'm I'm stuck in that sticky tension between the do we implement it? Do we not implement it? What causes more harm? What causes less harm? And how do we even measure that harm in the first place?

Speaker2:
It struck me when Cynthia made that appeal to listeners, which we also want to underline, to put those image captions on posts that you make. And that made me think of was, you know, the concept of techno solutions in which we talked about before in the show this idea of like creating technology to fix problems because, you know, if we just keep making better technology, then we can solve more and more problems. And it's just inevitable. It's almost it's like development narrative that, you know, well, we'll get there eventually. And I think what Cynthia's research and work points to is that we have this very complex and nuanced social system, including, you know, a bias against disabled folks and a design field that largely does not take into account the needs of that community in that population. And so the question of how do we address those social and societal issues while still, you know, utilizing technology, but maybe not making technology the focal point or maybe not even the starting point for how we address it. I mean, I agree with you. It does seem like a a catch 22 because it seems like for first, Cynthia, and at least my interpretation is that, like, there's almost a harm reduction model here of like we need to do something. But the question of what we do needs a lot more nuance than saying, well, we need this to be more accessible. Right. Like there are real needs of real people in this community. And but then you have the feeling of like how do you how do you do that development work while using that their expertise without saying, well, you need to do all of this, you know, emotional or design labor to speak for like the entire disabled community or or anything like that. So, I mean, I love Cynthia's work because it brings that level of complexity that I think is needed in these very nuanced and complex design spaces.

Speaker5:
Yeah. And that level of forethought to I think that there's a lot of intentionality in the way that the design projects are done with both Cynthia and her team and all the authors, the co-authors on these papers that she has published in this space. It's clear that there are a lot of stories and narratives that are being told from the people who are living and experiencing disability and experiencing the lack of accessibility in these technological systems. And I absolutely loved the project that Cynthia explained. Were there, you know, representing the stories and the narratives and lived experiences of people who are needing accessibility and design. And it brought me back to one of the classes I've been taking this semester for my Ph.D. program is called Community Based Design. And one of the methods that we've been talking about for designing systems with people instead of for people is to bring in this element of storytelling and to stop making assumptions about what people need and what problems they're experiencing. But to actually ask them and to listen to them and to hear from them and work with them to first assess the problems and then design solutions or quote, you know, a solution space together. And I thought this was just such a perfect example of. A way to do that without erasing the lived experiences of the people who these systems are actually supposed to be designed for and utilizing their expertise and their knowledge and their experience to make them better.

Speaker2:
It's almost like we've seen a renaissance in our field. And maybe it's just like the circles that we run in just but of anthropology and sociology, but more specifically, ethnography in in this research world and the technological research world, especially around responsible tech. And it's it's curious to me because it does seem like this centering of people's lived experiences and lives, stories. And what I love about Cynthia's model of biographical prototyping is looking like centering those stories, which I think is something that we can do no matter where we sit, no matter what we're we're studying and researching, because it seems like one of the things that's gotten us into many of our of our pickle's, including that solution, is typical for lack of a better word, the corners that we painted ourselves into, which are, you know, causing harm, especially causing unintended harm, that the way out of that is to refocus on on the people, on the individual, on the holistic individual, not just saying, OK, this person is this identity. So we need to do X, Y and Z, like less prescriptive and more starting with that listening. Right. Not not to move fast and break things mentality, but how do we actually listen to the people who are going to utilize this technology? And it might take a little bit longer to design for that. But in the end, the consequences are going to be much less dire and are going to create much less harm. But again, we get to this point of like, well, the is there still, you know, is there still going to be harm? And, you know, the answer is, is probably as we figure this out and maybe always like we're not as we've talked about, you know, there isn't like this necessarily perfect system. But there is there are systems that are much better than the ones that we're currently using. And Cynthia's, you know, leading in how we might design those for this community and beyond.

Speaker5:
Absolutely. I think that's definitely a recurring theme in a lot of the episodes that we have on this show, too, is that we're not trying to to actually zero out harm. There's no way to completely mitigate harm. There are many ways to reduce harm, especially in a lot of key areas. And a lot of intersectionality is of identity and people who are experiencing the harms of these systems. And so we're hoping to to, you know, take some of our own advice here and continue to listen and hear the stories of people who are doing this work on the ground and making some incredible change for the community.

Speaker2:
Yeah, I think I just wanted to and with thinking about maybe our own area, you just put, like, the this this episode, along with with Mary Morrises episode, really forced me or invited me, I should say, to reflect on my own relationship with some of these communities or terms or anything like that. I know when we were and by that I specifically mean around disability studies. And I know like when we recorded the not just for Mary's episode, like I fumbled with my words a lot. And I think there's just like a stigma that I was taught against, you know, even disabled language in high school where that was seen as something I shouldn't necessarily say or that it was like somehow derogatory or something as opposed to descriptive or potentially empowering that. I think it's really important for for each of us and listeners to put ourselves in that uncomfortable space, because I think without self reflection, especially of those of us who do have some design power here, some real self reflection about some of our own, like social preconceptions about especially difficult or complex topics, that that's another way that we're just going to fall into this unintended. But still, you know, the impact is still painful and harmful harms. So that's that's something that I'm definitely reflecting on. And also, like, you know, I am not I'm very guilty of not having image tags for images that I that I put in image captions. And so that's something that I want to commit to doing better after this interview.

Speaker5:
Yeah, I think it was actually maybe in Mary Morrises interview where she kind of opened my eyes a little bit to this this notion that it's not that the world is designed and structured for humanity and then there's people who are experiencing disability. It's that the world is designed to only be accessible to some and to be inaccessible to others. And we have put those structures in place. And so our language and our framing in our our thoughts around what it even means to experience disability is largely like you were saying, don't stigmatize, but also it's built on this foundation of the structures that we have. Put into place, and it's also up to us to challenge those structures and to critique those structures and to hopefully build new structures where we can begin to recognize that it's actually possible to design for accessibility for everyone from the start. And I think after conversations with Mary and after this conversation with Cynthia, I'm starting to feel much more hopeful about a future where we have accessibility, first design in our minds from the get go. And I just I really completely agree with you that I think I've learned a lot here. And I think there's a lot more work to be done, both individually and collectively as a community. And I look forward to seeing where it goes from here.

Speaker2:
For more information on today's show, please visit the episode page at radical IDAG.

Speaker5:
If you enjoyed this episode, we invite you to subscribe rate and review the show on iTunes or your favorite pod catcher. Catch our new episodes every other week on Wednesdays. Join our conversation on Twitter at radical iPod and as always, stay radical.

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