As part of my Julie & Rocky Dixon Doctoral Research Fellowship in Graduate Innovation, I’ve been developing Tinn.
Tinn is a mobile application designed with and for people living with Tinnitus, based on socially conscious research with Native American Oregonians and migrant laborers residing in the greater Portland area. In general terms, tinnitus is a condition where people experience varying degrees of “buzzing” of “ringing” — also called “ghost sounds” — accompanied by varying levels of discomfort/pressure. One of the challenging things about tinnitus is that, like tuberculosis, flare-ups and stimuli are hyper-individualized: diet, technology use habits, weather, stress, social activity, etc. all affect people living with tinnitus differently. Tinn, then, was designed to empower people living with tinnitus to track their daily habits to better understand what might cause their own flare-ups.
Tinn is currently in its prototyping stage, but I think even at the preliminary moment it has some very important things to teach us about building with and for vulnerable populations.
the project, more broadly
Tinn is about more than building an app: it’s also part of a methodological intervention into technology research approaches that marginalize users outside of what Intel Researcher Melissa Gregg has called the “white, heterosexual, executive class of male users,” (see also here). Working with Oregonians alienated from technology research by their seemingly “non-universalizable experiences/habits,” and from the state by their status as sovereign and/or alien, I’m interested in how design and/or building “from below” or “from the margins” can create more equitable forms of user experience. Tinn, then, is more than an app for vulnerable users, it’s an epistemic platform for exploring the ethical histories of corporate technological research at the intersections of gender, race, and ability.
If there’s an intervention for academia here, it is in changing the terms and conditions of ethnographic research. Drawing on my design and building skills as a maker/tinkerer and designer (which come from my work on Fembot, the Fembotbot, Wikipedia, and breaking stuff to put it back together for fun), I’ve attempted to refashion myself as a “builder-researcher.” As a vanilla ethnographer working in Gibraltar, when I would get something wrong about how people use tech in various social situations, it was typically laughable and life would go on. As a builder-researcher working on Tinn, when I would get something wrong, the application I was using to elicit lived experiences of users with tinnitus would crash, and my own failure would become the site for research. That is a very humbling experience.
And, in those instances when Tinn didn’t crash – which is more often than not now, thank goodness – being a builder-researcher meant putting off the process of interpretive work until the pragmatic work of meeting user needs and demands was done. In interviews, what led my questioning was pragmatic concerns about use and function, and it was only during the review of interview recordings that I began to think about the interpretive work that I’ll share some of with you today. That interpretive work became very important as I dealt with the contradictions between what people said they do to track data about their hearing, and what they actually did to track their hearing.
a tale of two users
While multiple Oregonians from a variety of communities participated in this project, I want to use two particularly animated individuals to demonstrate the importance of a theoretically sophisticated design process in working with so-called “vulnerable populations.”
- mid-20’s, Black & Native American woman
- tinnitus is a health complication from teenage anorexia
- currently an undergraduate student, majoring in business administration
- primarily communicates orally/aurally, avoids people during flare-ups
- mid-40’s, Mexican man
- tinnitus is the result of insufficient workplace protections
- currently works in the construction trade, has since age 14
- primarily communicates through writing notes and text messages, functionally deaf
tracking data, dignity, and protection
The contradiction between what Nephi & Adolpho said they do and what they actually did becomes most clear in examining the use data from their phones – data that reflects When Nephi and Adolpho used and opened the app to log their daily habits.
But even the process of doing that data tracking was politically wrought. My first interviews for building Tinn began in the immediate aftermath of the Facebook psychology scandal. So, it was on the tip of the tongue of many individuals – even those who were not Facebook users like Adolpho. “Whites have always tracked my ancestors and relatives somehow,” Nephi said. “You don’t get to control my data. I know you get it.” I did get it; anthropologists have long been implicated in the monitoring and tracking of indigenous populations, a practice that continues today through the Indian Registry and Identification System that “legitimates” Native Americans as sovereign-yet-American. This identification registry system has historically been used to track Native American “subversives,” who were then detained with limited-to-no rights under international espionage laws.
“So how are we going to do it?” Nephi asked. I had no idea. But I had multiple other interviews, and plenty of time to think about it.
In my first interview with Adolpho, he held similar fears about the power of data tracking. “You see where I am at any time?” He wrote on a notepad in our first interview. It was a question he would continue to point at throughout the interview. His daughter would later tell me the reason for Adolpho’s nervousness. “I don’t know if it’s true,” she said, “but my aunt thinks that my cousin was caught by INS through his Facebook. My father is nervous the same could happen to us. He bought that phone because the salesguy said you could turn off the GPS permanently.”
The solution to maintaining Nephi’s dignity and protecting Adolpho was something radically different: the ability of users to delete the research data without destroying their own. This involves two corresponding – not interlinked – databases that record the information separately. Once we loaded the prototype onto their phones, we set up time to meet every two weeks for me to load the usage data onto my computer. At any point, they can destroy everything. They have used it on multiple occasions.
categories of experience are political categories
“Environment” seems like simple enough of a category. It mattered in a lot of the medical and sociological surveys I read about tinnitus while preparing for the project. So I thought I would include it in my initial category map in doing research. Based on a stickynote-on-posterboard Human Centered Design method Dawn Nafus and I had used during one of our earlier ethnographic interviews for another QS project, I populated the ‘environment’ field with things like “weather,” “air quality,” and “light source.” I shared this with Nephi and Adolpho, who used a paper version of the application to test how they might track data. They didn’t ever use the environment category.
When I asked why they had neglected the category in one on one interviews, Adolpho and Nephi’s answers were eerily similar. Nephi replied: “That’s not the environment to me. Environment is stuff like family, friends, who is around you. What you’re doing. Is it work? Is it home? Is it a friends house?” And Adolpho responded more humorously: “Am I in the environment where I would like to have a beer? Maybe that should be one of your questions for environment: ‘Would you have a beer here?”
I was perplexed by the differences in their definition and mine. But the discovery process was one of coming to terms with racial privilege. Even though we share similar biographies – I’m a first generation student from a working class family raised by a single mother in a neighborhood where my white skin put me in the minority – our social positions are much different in Oregon. As a white upwardly mobile man, environment means to me what it means for many white Oregonians: the natural world, something to conserve and protect. But the concept of “environment” is experientially different for Nephi and Adolpho, who grew up in a post-Moynihan report US, where sociologists and politicians claimed that the “Social Environment” produced by single mothers of color was detrimental to the social longevity of White America. “They were constantly asking about my environment in grade school,” Nephi recounted. “Are you eating enough? Does your mother help you with your homework? Do you have a father?” Adolpho was much less aware of the use of the term, “Just what I think of when you use the term. Family, friends, home…. Social workers asked [my daughter] if I drink beer a lot.” Whether explicitly or implicitly, the terminology of the “environment” for low income Oregonians of color is shaped by a history of racial urban science that itself shapes the categorical organization of the world, and, in the end, can shape the ways we design applications for users outside of Melissa Gregg’s “white, heterosexual, executive class of men.”
There are of course many other instances in which categories mattered differently for them. Adolpho, for instance, wanted his day organized around meals on the app. Nephi, however, argued that this was triggering for her, as a young woman who had a very complicated relationship to her own body, deeply impacted by data tracking technology no less. I messed up on the last prototype, leaving dinner as the category for evening, and she was so kind as to laugh it off (not without a bit of teasing, of course). Nephi wanted full customization, “like my ChompSMS, where I can change everything,” while Adolpho said “I hate options like that. Make me feel like I’m not really using the app. And then I stop using the app.” Negotiating these differences and preferences is only possible through attention to the social ethics of the building process — users can’t get what they want all the time, but they should at least be able to not get that while maintaining a sense of dignity.
wrapping it up
My work on Tinn is far from done. And it is applied research at the intersections of academy, industry, and advocacy I’m excited to continue.
A final few words: My work as a builder-researcher is not a departure from my academic research, which is focused on the role of media scientists in shaping the gendered contours of global media flows and frictions. Rather, it’s a realization of and response to my and others’ critique that scientists do real, symbolic and material violence to populations in the process of media and tech innovation. And, while it’s impossible to avoid that violence, it is possible to mitigate its effects through socially conscious research practices like those I’ve been developing through Tinn.