Patrice Buzzanell 0:02
Hello, welcome to this episode of the Communicating For Impact podcast series, a production of the ICA Podcast Network. I’m Patrice Buzzanell, professor at the University of South Florida, ICA Fellow, and past president. I am delighted to invite Jessica Rauchberg and Dr. Paula Gardner to the podcast. Jessica Rauchberg is a doctoral candidate in McMaster University’s Communication Studies and Media Arts, she's also involved in the ABLE Project and she's Account Manager at Pulse. She is a Graduate Affiliate at the University of North Carolina Chapel Hill’s Center for Information, Technology, and Public Life. Dr. Paula Gardner is a professor of Media Studies in the Department of Communication and Media Arts at McMaster University and the Director of Pulse Lab. Today, we will be discussing their academic journeys, their fights against ableist agendas, and their efforts toward developing more effective research methods through interdisciplinary practices. Today’s episode will begin with Paula…
Paula Gardner 1:27
I'm Paula Gardner. I do work that is derived from critical feminist studies of science, technology, and platforms. I do it in text-based practice and in collaborative practice. I'll be talking a lot about the collaborative work that I do with different communities at need, at risk, who have been structurally discriminated against, and how I engage in practices of co-design aimed to create new methods that are really non-extractive and build agency and engage interdisciplinary practices that are cross-faculty and cross-sectoral.
Jessica Rauchberg 2:06
I'm Jess Rauchberg. I'm a doctoral candidate (ABD) in the Department of Communication Studies in Media Arts at McMaster University. I'm also a project manager in Paula's lab, Pulse Lab, which is housed in our department at McMaster. I have always been really interested in disability, culture, and cultural production. It's influenced by my own lived experience as a disabled person. I came to communication studies and cultural studies as someone really interested in understanding how ableism shapes our experiences with social structures. It turned out after trying several different areas and subfields of the discipline that media and cultural studies were my home base of looking at how ableism organizes our relationships with media, and how do offline networks of oppression like ableism, racism and colonialism, structure the programming and use of our digital media technologies. Particularly, I look at social media. Today, I want to talk about some of the work I'm doing in my dissertation, and also my work with Paula and Pulse about how to think past ableist platforms, algorithms, and artificial intelligence, and how does a disability justice approach and a collaborative approach help us think about and conceive better technology?
Patrice Buzzanell 3:22
Both of you have given us a lot to think about, both in terms of the work you do, but also the trajectory of how you got to the place that you're at now. I'd like to start there, and then move into the work that you're doing with disability, different groups, and communities that are at risk.
Paula Gardner 3:42
I'm trained in media studies, in terms of critical texts based approaches, but also practice-based approaches. I also have a background in human rights and feminist activism. When I went to the Academy, I knew that I wanted to engage in media to address biases that are intersectional and cause people to be marginalized to lack access to tools and resources. I saw enormous bias in the Academy, honestly. It's my driving motivation to combat bias, but also elitism. The Academy is a really elitist place. I was raised to respect lived experience and the knowledges that come through lived experience. Then in the Academy, I saw people talking about that, but not actually engaging in that respect. My work is to create access to technologies and tools in these principles, to share access and to combat elitism as well as bias. My research programs are cohered by attention to combating bias and exclusion that's really rooted in elitism as well as different biases. The reason that I do work that is community-based and interdisciplinary is because there are lots of communities who are positioned socially and structurally so that they don't have access to resources. They don't know they're allowed to have access to resources. I work with a lot of communities who don't know they're allowed into public galleries, museums, and institutions of higher education. They think that they are barred based on their race, ethnicity, or immigration status. I work in transdisciplinary and interdisciplinary work because we all know a lot more together. I think those two practices together, pulling on community knowledge, and pulling on knowledge from other disciplines, ensure that we're exchanging and capturing knowledge from people with lived experience.
Patrice Buzzanell 5:41
Paula, I'm really curious, you were ICA president. As past presidents, during our terms, we get to bring some of our agenda to ICA and to the broader communities. How did this purpose what you did during your presidency and afterwards?
Paula Gardner 5:59
Let me just say, it was really an honor and a learning experience to serve as president and on the exec. for six years. The first thing I would say is that it was such a learning experience. Then, the second thing I would say is, I came with a platform that I think reflects what I was just talking about. One, how can we share across our disciplines, fields, and divisions? How can we cross-pollinate, but also how can we look at the systems we have created and evaluate them and repair them to remedy access, issues of consent or lack of consent in academic spaces and conference spaces? How can we look at our actual mission statement and think about what meat we have on the bones there so that we can activate policies around consent and non-bias safe spaces for working. I tasked a committee to review the ICA mission statement and to create a new ethical code of conduct, but it reflects the new mission statement which has more meat on the bones. A lot of people contributed to that, but I tasked that. I was really pleased with that structural change at ICA.
Patrice Buzzanell 7:11
People will ask me, “But how did you start?” The field wasn't necessarily doing these things when you started. Given your background, in terms of text- based work, how did you create that space?
Paula Gardner 7:25
In some of my early jobs, I was doing documentary work. I was at Florida State, and I was working on a project, interviewing survivors of torture and persecution with some money that had been granted to me by Florida State University. Then I moved to Canada. I took a different job at an art university. Canada is a grant-rich environment. We started applying for and getting grants for practice-based collaborative artwork. We were thinking about how to create interactive art projects that bridged the digital divide in downtown Toronto using located spaces. The artists, creative coders, and designers that I was working with, together, we created a bunch of interactive media, art projects, in the city of Toronto. But again, the principle behind that was how do you bridge the digital divide, so that everybody can understand what technology is doing? You can use digital technology or you can play these games in an analogue way. That was how I began and it really fueled me and led to other interdisciplinary projects.
Patrice Buzzanell 8:29
Have you ever been rebuffed by different groups in terms of work that perhaps you would like to do?
Paula Gardner 8:37
One of our earliest projects was called the Mobile Digital Commons Network, funded by Heritage Canada. We were trying to bring together artists who do art-based, practice-based work and creative coding with engineers who do computational approaches to building platforms. We tend to have extremely different methods and extremely different platforms. The conceit of this project was could we exchange methods to create a transdisciplinary method. It takes a lot of time to share your methods, the values and principles behind your methods with each other listen, reflect, decide some of your methods need rehabilitation, do that together, and then execute that method. It takes more time than grants allow, it takes more time than universities allow, and it is unremunerated labor. That's one of the problems I continue to battle with, within teams and within the institution.
Patrice Buzzanell 9:40
Jess, you have just been ready to jump into this conversation. How did you get started and how are you making these connections with regard to the work that you're doing?
Jessica Rauchberg 9:52
I wanted to go to grad school for spite. Because I had these undiagnosed learning disabilities that I didn't receive my diagnoses until grad school. I had a lot of roadblocks in high school where I was basically told you're not going to graduate from high school. You're not going to make it. I thought to myself, “No, I can.” The structure in place isn't working for people like me, and I did graduate, and I did go to university, and I thought I wanted to do nonprofit work. I took a disability studies class, and that changed everything for me. I learned there is a whole community of people who are like me, people who are different from me, but we share this political and cultural identity. There is a disability culture that can be really rewarding and life-saving, and I mean that very literally, for so many people. I thought to myself, I'm really interested in these narratives of disability. I want to study autoethnography and disability, and I tried that out and it wasn't working for me. I knew I wanted this focus on disability and culture, then media studies made sense. I was trained in critical cultural critique of representation and popular culture, how is disability shown in regards with its connections with race, class, and gender. This is my issue with critical cultural critique, it sometimes just ends there, and I want more. We know that here's a problem, how do we interrupt it, because it's impacting even people who are not necessarily part of disability communities. Ableism impacts all of us. I ended up at McMaster, thanks to my master's supervisor, Rachel Dubrofsky, who told me if you want to do the work you want to do, you should go to Canada, because, as Paula mentioned, it's really interdisciplinary and very collaborative. I ended up at McMaster and working in Paula's lab. That experience of first as a research assistant user centered design, and then later as now the lab’s project manager, that changed everything for me. Learning how to work together and collaborate with people in different disciplines, sometimes there's friction. When we are trying to build access and build better worlds, sometimes based on who we are, and how we conceive of what that better world is, we're gonna have some friction, or we're not going to reach that point at the same time, or we'll have different needs to reach that point, but there's beauty in that. I completed a fellowship through NSERC, which is Canada's equivalent of the National Science Foundation, in an interdisciplinary training program for designing assistive technologies and AI for older adults. That was really enlightening. Getting to work with students who are trained in biomedical engineering. Paula mentioned co-design, and a lot of times co-design follows that top-down thinking. It's what the researcher wants, but I think what I really learned from being in her lab and collaborating with stakeholders and collaborators on, and beneficiaries on these projects, is considering how we can use our position and our resources to help people meet the goals that they want for providing access or comfort or care. Entering the field or the fields that I'm in at this time is really exciting because that work is already foundationed.
Patrice Buzzanell 12:57
The podcast is titled, “ Communicating for Impact,” and the strategies for how you actually do this would be what I want to focus in on next. In terms of practical steps to meet these huge agendas, which really are the global challenges that we are facing, where do our listeners begin?
Paula Gardner 13:22
I love this question, because it really speaks to the fundamentals of both interdisciplinary practice and engaging with community. For me, the answer is go to the community and ask them what they need and what they would like to do. Opening up is not just a matter of creating a project from one's own mind, and finding a population that's willing to work with you. That can lead to extractive practices. But at the same time, you need to have a hunch. Then, you find ways of contacting people in community to have a conversation, not to ask them for something, but to have a conversation that can start to build a relationship. Relationship building leads to project design, and the project design needs to be collaborative. Otherwise, you'll inevitably run into problems where you're creating a research project and a research question to deliver to community, and that's extractive. That's how the fundamental element of our practice is engagement and collaboration.
Patrice Buzzanell 14:29
The amount of time it takes to lay the groundwork for these projects in an academic system that doesn't always respect and understand that commitment. The other part of it is this critical empathy approach. Knowing that you're trying to build shared understanding, and really troubleshoot the problem. I appreciated what you were talking about, with regard to this co-design process.
Jessica Rauchberg 15:01
Something that stuck out for me is understanding that you don't have to have this big project to make a change. Even the smallest reconfigurations of what you want to do can really make an impact. When I started my PhD, I had a public-facing Instagram account called disabled PhD. I originally started it because I wanted to connect with other disabled grad students. I know, at least in the US, only 5% of humanities PhDs are identifying having a disability. It turned out to be so much more than that. Just sharing my experiences and strategies for how to tackle academic ableism when the university, an instructor, professor, or PI doesn't handle your accommodations or refuses to accommodate you, which happens to people all the time, or just even sharing some of my research on disability and race and media and technology that made such a big difference. It was so great to connect with other people and collaborate in this digital space about our experiences. Academic ableism can occur in so many ways. It's very insidious in how it moves through the institution. I noticed one day in late 2020, after I had shared a post about these definitions of disability and how we can redefine our conceptions of disability, my engagement didn't exist anymore. I was thinking, “Did I do something?” What's going on? Maybe it's an accident.” I realized that my content I was posting on Instagram had been flagged by Instagram’s content moderation protocols. This is colloquially known as shadow banning. It was like my account didn't exist, even though it was public facing, and I was creating hashtags. Even under these hashtags I had created for these posts I created, they didn't show up if another user looked them up. That's what really got me into my dissertation research. I realized, it wasn't just happening to me, it was happening to other disabled people across platforms. Tik Tok has been a huge platform that has definitely engaged in this type of shadow banning. Knowing that these communities that I'm part of, were also facing these forms of what I call algorithmic ableism. What does the community need and what do they need from you? Then, thinking about refusal as something that's okay. Researchers and academic researchers, in particular, have really exploited marginalized communities. I know a lot of disabled people are very wary of academics, even other disabled academics. For so many decades and centuries, they've been really mistreated by academic researchers. I think our role as people who are trying to use research as a form of community and social impact is to respect that and to realize that it's not always about you. You have a real responsibility to protect your relationship with these folks and protect their agency, authority, and what they are trying to advocate for themselves.
Paula Gardner 17:52
I think that's so crucial. I think that part of what Jess and I are both working toward is a multi-pronged approach to making research available. On the one hand, we have to listen, we have to desire and ask for the knowledge that comes from communities and lived experience, and we have to ask for it and absorb it. We have to be non-extractive, we have to come in and leave something. We can't just take our research and our tools with us when we leave. On the other hand, I think we are part of the critique of the neoliberal university. That the university wants to brand itself as open doors, engaging with community, and providing access. And that's a problem. But it's also a problem if access is denied, because access to research is a right. Think about all of the research that's been done that was based on the white, normative, heterosexual body, around health issues, and the rest of us were left out of it, so we didn't benefit from that research. We didn't have access to it and we weren't the data that was part of that research. So how can we remedy this? Instead of running away from community-based practice for fear that we're going to be part of the neoliberal establishment or extractive, how can we engage practices so that we can go into community and work with community in really ethical ways? I think that's the challenge.
Patrice Buzzanell 19:15
Do you have an answer?
Paula Gardner 19:20
We really need to be flexible and open to changing the research question, designing the structure around participants, and going after the things that are their preferences and losing your own preferences for the researcher, and that's hard. Sometimes grants don't allow you to do that. Sometimes you don't know how to do that, or you're actually not that flexible. Sometimes your teammates, your interdisciplinary teammates aren't that flexible, and oftentimes, your institution is going to put constraints on you. What you said Patrice, which is one of the biggest problems, the labor involved in doing that is unrecognized and uncredited. We need to change our own structures and practices, and I think we do that by sharing the practices that we're trying to create, and then publishing those methods papers.
Patrice Buzzanell 20:10
How do you see yourself moving forward, given these challenges in the different spaces that you're in?
Jessica Rauchberg 20:18
I really learned that in our lab working on the ABLE platform, COVID-19 set us back in a lot of ways, but I think something we've done really beautifully is how we reconfigured conceptualizing the platform. How it can be used? How could we meet the access needs of our collaborators and communities that we're working with? What does that look like in a world that is sometimes hybrid or sometimes totally online? I think that flexibility, and that bringing the idea of collective access and understanding that sometimes things change, and we need to reconfigure how we're working with our ideas and our communities. Our research questions and commitments can be really impactful with, how do we move forward? How do we begin to make these big changes?
Paula Gardner 21:01
The ABLE platform is a game-based platform and activity platform. ABLE stands for Art Based practices to promote Longevity in Elders. One of the things we're trying to do is combat ageism and ableism. I think these are the two remaining prevailing forms of bias that somehow seem socially acceptable in the 21st century. Age bias, false age beliefs, actually have been shown to cause problematic aging. Aging with health problems, mental health problems, mood problems, there's a really great workout by Becca Levy on that. A lot of older adults are isolated and lonely. It got worse during the pandemic. Isolation and loneliness creates a number of things: you move less, you're less mobile, that creates physical problems, cognitive deficits, and emotional mood problems. The answer is socialization, movement, art, and play. Opportunities for creativity and learning have been shown to really help older adults to thrive as opposed to decline. We see ageism as an opportunity, as part of a lifespan that continues to involve growth as opposed to a period of decline. As Jess said, we pivoted during COVID, because we were doing in-person work. We pivoted to online work creating an online platform. This is meant to be a platform that will support people through pandemics, but also through any periods of isolation. Lots of people who have decreased mobility live in isolation, and some people live in rural and remote areas.
Patrice Buzzanell 22:43
You've brought up projects and commitments that we didn't even really touch upon, in terms of going back to it and really digging in, what is it?
Jessica Rauchberg 22:55
Something that I would have liked to talk about a little bit more is the ideological hypothesis that structure the design of information and communication technologies. This is something I focus on in my dissertation and thinking about how a lot of these technologies that have come out in the last 10 years, especially as we get more research on aging and disability. In some ways, these can be really great, but a lot of the time, these top-down assumptions about what disabled people really need, to borrow Liz Jackson and Alex Haagaard's term, their “disability dongles.” They actually don't really help and meet the needs of disabled people. They often reproduce really ableist ideas, and they're rooted in ideas of rehabilitation and cure, and that can be really violent. The wearable shock devices that autistic, intellectually, and developmentally disabled older adults are forced to wear at a lot of residential sites and spaces. I think the best way that we can shift that conversation is thinking about changing the values and the commitments, goals, and access needs we have in designing information and communication technologies. How can we design and collaborate in ways that affirm the needs and goals of disabled and older adult users? Representation has a limit. I think part of that conversation is getting more people in that room, but also changing the room and changing how we think about creating technologies. Whether it's from designing a UX user experience flow or considering the testing process. Is your co-design really co-design, or are you just calling it that and you're not really listening to your collaborators' needs? That's something that I didn't expect I would be studying or working in when I started my graduate experience. I'm really grateful to have these conversations because I think it is a way to make that change and think about how all this research can lead to an impact outside of the ivory tower.
Paula Gardner 24:54
The first thing I'd like to say is that the bias within the university that favors academic intellectualism over community-based knowledge is a fundamental problem. It is born of gender bias, racial bias, ethnicity, and colonial bias. I think that as we carry on, participating in witnessing the movement for racial justice and equity. We really need to check our assumptions around what constitutes knowledge and the pride that we get from our academic output. I think it's really important to check our epistemological arrogance. The other thing that I would say is, we've been talking a lot about participatory community-based practice. One thing I think that we can do better is taking the work that we have produced and translating it so that different communities can access it, and attaching action items to it. I think we need to do a lot more of that knowledge translation in ways that are really intentional and meaningful.
Patrice Buzzanell 26:04
Thank you both. Jessica Rauchberg, I thank you for sharing your work and your beginnings. And Paula Gardner, just how you began, and the ways in which you were presenting us with a step-by-step of how we could actually do some of these things and access different populations. Thank you both.
Communicating for Impact is a production of the International Communication Association Podcast Network, and is sponsored by the College of Arts and Science at the University of South Florida, which focuses on the big questions facing all of humanity. Our producer for this podcast is Bennett Pack. Our executive producer is DeVante Brown. The theme music is by Ruhan A Paniyavar. Please check the show notes in the episode description to learn more about me, our sponsor, and communicating for impact overall. Thanks for listening.
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