DialoguesCover story

XXVIII.3 May - June 2021
Page: 28
Digital Citation

Articulations toward a crip HCI


Authors:
Rua Williams, Kathryn Ringland, Amelia Gibson, Mahender Mandala, Arne Maibaum, Tiago Guerreiro

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From the Special Interest Group on Social and Behavioral Computing founded in 1969, to its refocus into the SIG on Computer-Human Interaction (SIGCHI) in 1982, the ACM has over 50 years' history of research inquiry exploring the interstitial space between human and machine. Though HCI as a field has experienced a number of paradigmatic shifts and turns [1], its relationship to disabled humans has often lagged behind the rhythm of such waves. Some of the earliest ACM publications relating to disability investigate simulations of logistical operations in the care and handling of patients in residential facilities [2,3,4]. Publishing between 1972 and 2003, the SIG for Computers and the Physically Handicapped was devoted to exploring adaptive computing to support physically disabled people in the workplace. This SIG transformed into SIGACCESS, with an interest in the broader range of disability modalities as well as issues of user equity and advocacy, though the focus on professional interests remains prominent in the SIG's mission.

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HCI researchers are now broadly engaging in turns toward the phenomenological and the critical in the spaces between human and machine. It is notable, though, that while phenomenology and HCI are engaged as early as 1976 [5], it is nearly 30 years before it is taken up again in the mid-aughts, and it remains largely centered around reproducing physical embodiment in virtual or augmented spaces. Likewise, though feminist HCI [6] and critical disability studies (CDS) in HCI [7] both emerge in 2010, CDS is not formally mentioned again until 2019 [8].

back to top  Insights

Crip HCI recognizes the researcher as situated, and thus articulated within, the sociotechnical meta-contexts of society, scholarship, research, and design inquiry and practice.
A practice of articulation within disabled community, disabled space, and disabled consciousness is an essential and ongoing process toward a more equitable, more just, and more humane HCI practice.

In "Cyborg Perspectives on Computing Research Reform" [8], we illustrate that situated knowledges are essential to the ethical evaluation of technological systems within their sociocultural contexts. Namely, that disabled people, as "common cyborgs" [9], are always already entangled and articulated within sociotechnical hybridities and thus have unique onto-epistemic expertise and insight into the consequences of HCI work.

As noted earlier, HCI is devoted to the study of that interstitial space between human and machine. Essentially, HCI is the study of sociotechnical articulation. More concretely, scholars of HCI recognize articulation work as the labor, often collaborative, infrastructural, or otherwise meta-negotiated, required not only to integrate new technologies into existing systems, but also to maintain those consequent sociotechnical formations [10,11,12]. The formation of a feminist HCI [6] can be interpreted as a domain of meta-articulation, wherein feminist perspectives and theories are integrated into both the evaluation of HCI impacts on social constructs as well as the generative practice of designing with and through feminist theory.

Like feminist HCI, expressed as a methodology [13], a possible formation of "crip HCI" is not meant to dwell solely within the realm of sociotechnical critique. A crip HCI would generatively integrate the plurality of cripistemologies, the unique onto-epistemologies of disabled people in resistance to normative narrative [14], in the practice of forging new sociotechnical futures—futures in which the presence of disabled people is not only natural and welcome but also desired. To that end, crip HCI recognizes the researcher as situated, and thus articulated within, the sociotechnical meta-contexts of society, scholarship, research, and design inquiry and practice.

In the effort to collectively forge this new crip HCI practice, this series of dialogues follows a disparate group of researchers as they explore and articulate their own situatedness within and between the research and disability communities. I contend that such introspection is an essential practice toward research reform that centers accountability [11] and leverages passionate witnessing toward a new crip-affirming future [15].

Rua Williams

back to top  Chance Encounters

* A Conversation with Tiago Guerreiro

Tiago Guerreiro is a professor of computer science at Faculdade de Ciências da Universidade de Lisboa in Portugal. As a member of the LASIGE research unit, Tiago leads a group that focuses primarily on the accessibility of digital systems. I asked Tiago to tell me the story about how he began working in this technology space.

When applying for grad school, I was torn between computer science/engineering and psychology. I enjoyed using computers but also knew that I wanted to have direct contact with people and impact people's lives. I ended up choosing CS, but, despite enjoying math and introductory programming, I was not impressed with the (sole) technologic focus of the curriculum, to the point that I seriously considered changing to psychology. Just in time, I took the undergrad HCI course and found out what I wanted to do with my professional life. My professor at the time, Joaquim Jorge, who also ended up being my M.Sc. advisor and Ph.D. co-advisor, presented a project he had for people with visual impairments. From then on, I felt compelled to do work in that space. This experience merged my desire to interact with and impact people's lives with my belief in the power of technology to do so. My M.Sc. focused on improving communication for people with tetraplegia. Around the same time, I started working on a collaboration on mobile accessibility for blind people with Fundação Raquel and Martin Sain (FRMS). This became the pillar to most of my research.

What struck me immediately in Tiago's story was his devotion to serving people, to improving their lives. I think many assistive technology researchers share these kinds of origins—a strong conviction that technology can help people, particularly those who are not thought of first when considering technology, such as disabled and aging people. Most remarkably, these serendipitous moments, like Tiago's classroom experience, are the moments that point them toward accessibility research when they otherwise might never have found their way to such inquiry.

To learn more about Tiago's experiences with serendipity, I asked Tiago to tell me about his relationships with participants.

In the work I did with people with tetraplegia, during my first research steps, I dedicated one year to recruiting, knowing, and understanding the daily lives of people with tetraplegia and how they were using technology or limited in using technology to communicate with others. I ended up doing studies with a limited number of people (6–8) and becoming close friends with two of them. I ended up focusing my attention on the design of technology for situationally augmented disabilities, for example, when they were laid up in bed.

The psychologist of the FRMS institution, Carlos Bastardo, has been the most important person in my research work. Carlos is blind and a dear friend. Although he does not want to participate in the academic publications, he is passionately involved in the research projects, providing ideas, insights, and critique. Several of our projects were bootstrapped by him, or came about through our discussions with him, when discussing results of a previous study.

At this point, I have known and conducted studies with more than 350 people with visual impairments, most of them older and excluded from an active participation in society—which unfortunately ends up being representative of the blind community in Portugal. I feel privileged to have found collaborations with these institutions and have known, talked with, and learned from so many different people. We [16] continue to engage regularly with our collaborators. For example, we organize a monthly tech-support workshop where we dedicate an afternoon to helping anyone in dealing with their devices, applications, or other doubts they may have regarding technology. We ensure our students are embedded at FRMS before they even begin to design technological solutions.

It was engaging to learn how Tiago's work was fundamentally tied to the friendships he has made with disabled collaborators and participants. I especially appreciated that he seeks to give his students this same opportunity, hoping they will form relationships at FRMS that will better inform their design work. Tiago also told me about his efforts to involve multiple stakeholders in system design, from disabled people, to caregivers, to clinicians. As a critical disability studies scholar and a disabled person, I know how often those multiple stakeholder perspectives contradict, and even clash. I wondered if such tensions ever complicated the progress of an experiment.

In 2013 and 2014, we were studying new ways to put braille back on mobile devices, as a way to improve typing efficiency for blind users. We developed several braille virtual keyboards, including OpenBraille, a chord-based touch input method, and B#, a spell checker for braille touch typing. We explored if people could read chords by vibrating their fingers (UbiBraille), which could be used for a more inconspicuous interaction, by allowing typing and reading. In one of our experiments, we tried to assess if we could improve typing efficacy by vibrating people's fingers with the detected chord while they were typing, which failed completely. While some participants were able to write as always, some participants felt overwhelmed by the feedback and we had to interrupt the experiments.

I was impressed by Tiago's humility in relating this experience. Despite his longstanding relationships with people at FRMS, his team hit upon a design that failed. Such frustrations are a necessary part of research. It is humbling to know that no matter how experienced we are, nor how embedded we are in the community, we will always have more to learn.

I was curious about how Tiago's experiences differed between projects for disabled users and other users.

In other contexts, I try to apply the same approaches I described earlier. For example, we are working with clinicians in the area of pervasive healthcare and have dedicated most of our time to doing formative work, embedding ourselves in the context for which we are designing. I am not sure where the differences originate, but it is clear that the proximity and engagement I have with participants from the disability community are higher than in all other projects. However, I am not sure if this is because of the different communities or because I feel that I am an ally of the disability community. I always felt very welcome in all institutions I worked with, where people were always encouraging and engaged, pushing us to do more. I never felt that so truthfully in any other context.


I am not sure where the differences originate, but it is clear that the proximity and engagement I have with participants from the disability community are higher than in all other projects. — TIAGO GUERREIRO


I was struck by Tiago's affective connection to accessibility work. It made me curious about how he works to disseminate his findings to his participants, for example FRMS.

Sometimes we include a last step in our research: discussing our findings with the participants, which ultimately leads to changes or to shaping the findings. In other occasions, we shared a preliminary report with participants and welcomed reactions, but have had limited success in receiving responses. Occasionally, we organize a workshop at FRMS to present the studies done during the previous six months, and welcome people's reactions, opinions, and ideas. This always works very well, full of lively discussions, and has helped shape the direction of our research. In all cases, throughout the research, there are collaborators (e.g., Carlos at FRMS, but also others there, and always someone at any institution) with whom we discuss the past and future steps.

Tiago's story of articulation within the disability community is one that, like many others, begins with a seemingly random chance encounter and then blossoms into a passionate connection to community. For Tiago, success in research is inextricably linked to the passion and interest of disabled collaborators.

back to top  From Another Angle

* A Conversation with Arne Maibaum

Arne Maibaum is a Ph.D. student in the sociology department at the Technical University of Berlin. Arne's research focuses primarily on the study of engineers, often in assistive technology contexts. As a sociologist investigating engineer culture, he has a unique perspective on the dynamics present in assistive technology research settings. I asked Arne to tell me about his observations during a study of roboticists developing robot assistants for elderly people.

The first project I joined as a student was one of the first care-robot projects in Germany. Ten years ago, the goal was the same as it is today: to make assistive technology more appealing to the envisioned customers. In the case of care robots, these customers were elderly persons in need of assistance. During the project, it became clear that the actual customers were those paying for the technologies: insurance companies, elderly care facility administrations, or even relatives. The elderly people—the originally envisioned users—were viewed as humans in decline. Their unmet needs for assistance were seen as an opportunity to test the technology.

The elderly persons were framed with negative stereotypes: dumb, stubborn, slow, and anti-technology. Despite the supposedly user-driven approach and the moderation by social scientists, the developers maintained an idea of elderly people "just being stubborn" when presented with assistive technologies. It was expected that they were just "getting used to" the presented technology. This is a pattern I have seen several times since then while working with other assistive technology projects. This mismatch has been my main interest in assistive technology, as I perform the usual role of a social scientist looking at the ethical, legal, and social implications (ELSI) of technology and the accompanying research and knowledge transfer.

It seemed to me that Arne had this fascinating opportunity to observe assistive technology development from this liminal space—not participant, developer, or specifications manager, but also not layperson or outsider either. When I asked Arne how he navigates that space, he had interesting insights about the role of designers in such projects.

I like to work together with a good team of designers. While social scientists are doing the requirement analysis in contact with the intended user group, our reports are usually in a very specific language that will lose a lot of its potential when translated into the language of the engineers and technology developers. I find that designers are a great intermediary.

When I asked Arne to describe a time when a project didn't go as expected, his answer illustrated to me the often-hidden articulation work of participants in experimental designs for assistive technology.

I can't remember when experiments go as planned, to be honest. I can't even tell if it is the work with early-stage technology (e.g., social robots) or working with elderly people as the target group, or potentially a mix of both, that makes experimenting a genre of its own. What is striking is that for those experiments to work, there needs to be a lot of tuning and tinkering on the side of the participating persons and less on the side of the technology than one might expect. Often it ends up being more theatric, where the participants have to learn the exact command, voice tone, or gestures in order to make the interaction with the technology work. If the participants are not able to do it, I have observed them being replaced by "fitter" persons several times. Such experiments are usually not the place for surprise or input from the participants.

Arne'sperspective of what happens to certain participants in the technology lab really resonated with my own experiences in graduate school. I have seen this happen in HCI projects that are not related to disability or assistive technology. Often, as HCI researchers, we are trying to get data about the system, and will classify some participant sessions as bad data before taking the time to recognize that a participant who can't interact with the system as intended is the data we need most. When our participants are also disabled, this classification of bad data takes on new meanings for the articulation of power in the lab and through society. Arne was able to tell me about some of the differences he witnessed between elderly participants and participants that more closely identify with the disabled community.


Practices like participatory design or other inclusive development processes can become void because they won't produce any outside-the-box solutions. — ARNE MAIBAUM


Some projects I have been with tried to bring their applications from the context of elderly users into the contexts of the disabled. However, while researchers expected better communication skills from the participants and generally a more flexible process, they instead faced stronger opinions and clear articulations of opposition. Although this has a chance to be valuable for the engineers and designers, in the projects I have worked with so far, participants like this are not desired.

What is interesting is that other projects that consider assistive technologies not from a point of deficiency but rather as optional convenience features set up the whole development process differently. In my opinion, the most crucial part is that in most of these cases, the technology is not predefined, while during development for disabled or elderly users it usually is. Predefined technology, especially robotic technology, changes the process a lot. In particular, practices like participatory design or other inclusive development processes can become void because they won't produce any outside-the-box solutions, which might match the demands better.

What Arne has had the opportunity to witness from his peripheral position is the difference in motivations and outcomes when researchers come to a community saying, "We have this technology, how can it help you?" rather than more openly asking, "What do you need?" Both approaches are participatory, technically. But the technology-centric approach is constrained from the outset. Arne was able to tell me more about how researcher preconceptions can constrain interpretation.

We always present our findings to our collaborators at various stages. It is always a fruitful process. For me, it is integral for a good qualitative research cycle. Several times I had to redo my findings. It is especially valuable when you find lexical similarities that turn out to mean different concepts in different stakeholder groups. We wrote a paper on the meaning of efficiency among different groups in a nursing home; that word initially had been a central anchor to connect interest. After presenting our interpretations back to the different groups, it dawned on us that efficiency means different things to the elderly, their caretakers, and the managers and administration staff. While this might seem rather obvious now, it wasn't clear to us during the process. We were all in agreement on the need for efficiency; the problem of interpretation stood out only when presented back to us.

Arne's story is one of articulation within the peculiar space of research about researchers doing research. From this perspective, he is able to share observations that are more easily missed from within. Sometimes, we become so embedded in a solution context that we can't see the forest for the trees, and we can't see our participants past the malfunctions of our technologies.

back to top  Strange Systems

* A Conversation with Mahender Mandala

Mahender (Mahi) Mandala is a research scientist at Georgia Tech in the School of Interactive Computing. His current research is on developing accessible CS education for middle-school students with learning disabilities. He has prior experience with rehabilitative technology and mechanical engineering. I asked Mahi to tell me more about his first experiences with assistive and adaptive technology development.

I moved to the U.S. in 2008 from India with a B.E. in mechanical engineering and an interest in biomechanics—I wanted to combine my mechanical engineering with human factors/mechanics/design. Working on my M.S. in mechanical engineering and advised by Ken Fischer, I picked a previously abandoned seat-cushion project. The premise of the project was to design an active-pressure seat cushion to relieve the interface pressure of a person sitting on it. I had never before worked with anyone who used a mobility device and was excited to see how this project could help people. Unfortunately, I was in an engineering school with no rehabilitation/assistive technology expertise, and our medical/allied health school was an hour away at another campus.

Naturally, I began searching for experts in our local community in Lawrence, Kansas. I met an occupational therapist who worked at the Kansas Neurological Institute (KNI) who was happy to assist me with my project. I began shadowing him at KNI and observed how seat cushions were measured, selected, and fit. I also began researching pressure ulcers and factors that affect ulcers. Lacking the prototyping capabilities within our engineering building to work with the polymers required for the seat cushion and the complex design I came up with, I reached out to seat-cushion manufacturer ROHO in St. Louis—who obliged with four prototypes built and shipped to our lab. The study and the work I did on this project inspired me to seek out a program where I could continue to work with people with disabilities. This led me to my Ph.D. program at the University of Pittsburgh School of Health and Rehabilitation Science, where I worked on several Pitt and VA assistive-technology projects.

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As a disability activist who has lost friends and community members to complications from pressure sores, I knew that such injuries were some of the leading causes of death for people with mobility-based disabilities. This made me so curious to know more about this "previously abandoned seat-cushion project." When I asked Mahi for more information, he shared with me that the project had originally been a capstone project from an undergraduate team, so this was the only disability-related project in the lab available to him at the time.

What was far more fascinating, however, was Mahi's story of how he got prototypes from ROHO. Essentially, he found a chief officer who was impressed by Mahi's design work and directly handled the orders to make Mahi's prototypes. The design Mahi described to me was really quite elegant, with a grid of foam cells and an adjustable grid of pressure plates that would shift with the user's movement to maintain evenly distributed pressure. When I asked what happened to his project when he was finished, he informed me that the man who was helping him at ROHO had moved on to another job! It was amazing to me how fragile innovation in adaptive equipment can be. Something that could save lives today was frozen in time by one person's career move.

Mahi had more stories of the unexpected in adaptive equipment research.

In my doctoral work, I was working on designing a low-cost motorized wheelchair, where the cost reduction was achieved through using a single-wheeled drive motor set using a linkage mechanism, and manual steering. We had developed the prototype over several tests, ensuring we met all the ANSI/RESNA standards for powered wheelchairs. Once the prototype was ready and tested thoroughly, I wanted to personally test usability by trying to use the chair for a day as a wheelchair user would typically use it. I had to take the city bus from my lab to the university campus (three miles) and decided to do this in the morning rush. The whole experience opened my eyes to the challenges people with disabilities face—not just technical but also the social and individual experience of it. When I got on the bus, I could see people visibly upset that it was taking time for me to get onto the bus. I had to navigate onto the bus while avoiding hitting anyone on the bus (it was crowded). I received constant stares from everyone on the bus. The experience was so nerve racking that I drove my chair back home three to four miles instead of taking another bus.

Mahi also told me that he had friends who were wheelchair users supporting him on his city bus misadventure. He tells me that they laughed at him when he told them that the bus driver did not come to secure him like they were supposed to. In critical disability studies, scholars often caution that the "simulation exercise" can be detrimental to understanding the authentic disabled experience. They can lead someone to falsely understand "what it's like," and they often come away with more intensely stigmatized perceptions of disability than they had before. But Mahi was not performing a simulation exercise. He was articulating himself within the context of wheelchair and public transit use. Without experiencing for himself how the reality of public transit differed from the "system specifications," he wouldn't have had the same opportunity to understand his friends' wry laughter.

For Mahi, projects for the disability community are inherently different from other projects.

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The major difference for me is that people with disabilities are often quite resourceful, adapting and reusing technologies to suit their own needs. So, on most projects I find it interesting when I interact with someone and ask them about their problems, and they have already come up with ingenious workarounds.

It is often difficult to find a large enough sample when designing physical devices. It is disheartening to see good projects get abandoned as the solution is either not covered by insurance or has difficulty being commercialized owing to the market size.

Mahi's experiences with abandoned technology, whimsical industry patrons, and a medical and social reality that undermines adaptive technology advancement and deployment are frustrating, but not at all unusual. I find myself wondering how we as HCI researchers might organize together around means of producing and deploying adaptive technologies that circumvent or otherwise hack the broken system of disability service delivery that keeps so much technology out of the reach of the people we made it for.

back to top  The Particulars

* A Conversation with Amelia Gibson

Amelia Gibson is an assistant professor at the University of North Carolina at Chapel Hill in the School of Information and Library Sciences. In her research, she devotes her attention to the ways in which data and information systems can contribute to social inequities for marginalized groups. Though her work focuses on the data and information access of communities of color, she has found that access to disability services within communities of color is one of the places where information inequity manifests. I asked Amelia to tell me more about this intersection in her work.

The work that I do is primarily focused on understanding the ways in which we build marginalization and exclusion into information systems and services, so that we can improve them. I'm really interested in sociotechnical information and data systems that support health and wellness, holistically defined.

I always had the impression that assistive technology was about equalizing access to information in the same way that simple translation from one language to another equalizes access. It makes it so the person who is listening can understand the exact words that are being said, regardless of whether they make sense culturally or contextually. I started off working with parents on local information systems related to disability (schools, health systems), and I realized that this kind of translation didn't work for their kids once they grew past a certain age. We were trying to plan handoffs, helping young adults take over their own care in systems that were not designed for them. So I switched my perspective from simple translation to adaptation, and started to ask "What do you actually want from this interaction? How can we design information systems and services in ways that center your needs (and not your parents' or your doctors' needs)?" And that's where I am now.

Amelia's work was immediately precious to me. I am a disability activist. However, as a white person advocating in school districts, I have seen the stark differences in outcomes between disabled white children and disabled children of color, particularly Black children. These disparities often feel preordained based on the disparate ways in which school systems classify incidents based on a disabled child's race. There are so many complex issues at play, and I was excited to meet someone focusing on what the child needs and wants. I wanted to learn more about how Amelia collaborates with community partners.

I'm at the point in my career where I almost always have a community partner when I work on projects. I try my best to balance between larger institutional collaborators, such as the Autism Society, and compensating individual advocates on my project advisories. I also make sure that I am not just collaborating with advocacy organizations that are primarily led by white people. For all that they do for our local communities, many of the larger disability advocacy organizations are led by and focused on the needs of white people. That's not to say they don't include people of color, but many of us find community elsewhere, so I've found it important to work with local organizations and people in the local community who know what people who aren't in the upper-middle to high income brackets are concerned about.

One of my favorite collaborations right now is one that isn't project focused (yet—we are currently writing and submitting proposals). It is with CAARE, a community health center in Durham that is not focused specifically on disability, but has supported the health and food needs of Black people in the Durham area for a long time.


The work that I do is primarily focused on understanding the ways in which we build marginalization and exclusion into information systems and services, so that we can improve them. — AMELIA GIBSON


Amelia was hitting upon something really important. Disabled people are a part of every community. Sometimes by trying to focus explicitly on a disability category, we miss the specific circumstances that circumscribe what multiply marginalized disabled people need and desire. I asked Amelia to tell me more about intersectional approaches to community-based work, and what some of the unexpected barriers to doing this work can be.

My first survey as an assistant professor was done at a disability fair. I had come from a community with a very diverse, active parent group who was very vocal, disability-positive, and always more than happy to participate in any project or study without compensation. I was not ready for young adults asking me how much I would pay them to take my survey, parents who were offended that I referred to autism as a disability (or that I would "lump" Asperger's in with autism), people who were offended that I would ask about race (because "we are all the human race," as I was told), and people who were upset that I offered more than two genders on the survey options. Until that experience, I didn't realize that I held these assumptions about disabled people and their families having a specific political viewpoint. It was instructive, because some of those differences in outlook really do affect the way people seek, understand, and accept certain information sources and their relationship with data and science.

Amelia's story at the disability fair was one that I was all too familiar with. As a disabled person that finds community in activist spaces, I am often confronted by parents and caregivers who are not comfortable with disability as an identity, who focus on disability as something to be "overcome," who want to separate their child from other disabled people, and who pass those attitudes along to their children. We talked together about the micro-ethics [17] of participatory research in those moments when someone is expressing a need or a desire from within an ableist or racist framework. We are both always practicing new ways to offer our participants a new way of seeing themselves and the world around them without forcing our ideals onto them. Amelia's work, focusing on data and information access and equity, is a unique place to observe, understand, and start to untangle some of these intracommunal tensions.

My work focuses on information and data marginalization, and the disability community has been a very large part of that, but I also do work with teens of color and pregnant and birthing people, (particularly people of color). In terms of information systems and the ways that power is ignored, and thus abused, in information systems, the mechanisms work very similarly. We build systems that demand more information, at a higher personal cost, assume individualism and independence as most desirable, and provide limited resources to meet the needs of nonwhite, disabled, and/or birthing people. Experientially, the differences vary depending on the community that I'm working with. But the communities overlap, so the differences aren't always vast.

Given that Amelia's work focuses on data and information equity, it was no surprise that she was experienced in community dissemination.

I usually share my findings with my participants at some point before publishing, either through a handout or in conversations. Sometimes the findings have spurred changes in community services. One of my proudest moments was when an organization added an office location due to the number of responses from a geographic area that they were not serving. I communicate passively with my partners and community pretty frequently through Twitter, text messages, check-in calls, and emails. The practice of thinking through my community reports does remind me, I think, to show respect to the community in my writing. In presentation, I assume (and I teach my students to assume) that someone from the community that you are working with will attend. Always write as if the person you are writing about is in the room.

Amelia's final point really struck home for me. So often, when attending research talks in the HCI community, I find that the researchers are talking about participants who have the same labels as I do. When I think about how my children might feel to hear someone talk about them the way that researchers do, it breaks my heart. We have normalized the idea that positions of marginalization are naturally deserving of pity and charity. If we could shift our approach to one of equity and justice, like Amelia has, I think our field would transform into something truly remarkable.

back to top  We're Right Here

* A Conversation with Kate Ringland

Kathryn (Kate) Ringland is a postdoctoral fellow at the University of California, Santa Cruz. Her research explores disabled experiences with technology and society, and seeks to leverage those experiences in the design of supportive technology for disabled users. She is particularly focused on stigmatized psychosocial disabilities, a population for which most assistive technology research takes an interventionist approach. I asked Kate to tell me the story of how her work in assistive technology began.

I had completed my undergraduate degree with experience in both computer science and psychology but with very little interest in getting a job in the software industry at the time. I decided to do a summer research internship for underrepresented undergraduate students and ended up at UMBC with Amy Hurst as my mentor. I found the synergy between my then still-nascent identity as disabled and building and using technology to help other disabled people to be exactly what I was looking for. I immediately applied to grad schools (and will be forever indebted to Amy for her guidance) and began my journey as a graduate student studying accessible technology.

For Kate, assistive technology presented a natural and empowering space to explore and reconcile her emerging self-concept as a disabled person. I was reminded of late disability activist Stacey Milbern: "Through loving disabled people, I get to love myself." I imagined this personal connection to disability would shape the way that Kate engaged in collaboration.

My Ph.D. training was rooted in action research (big thanks to my advisor, Gillian Hayes) and I continue to embrace a community-first aspect to all the work I do. That means I collaborate with the people I am interested in helping. This also means that I often don't know what kind of technology I am studying or designing until I learn more from the communities I am working with.

Every relationship I have formed while working on different projects has become a meaningful experience for me. My longest-running partnership has been with the Autcraft community, a community for autistic youth centered around the game Minecraft. A newer partnership of mine has resulted in founding a nonprofit, the Kaina Institute for Equitable Research, which has goals to work with creating more equitable research experiences for marginalized communities rooted in indigenous methods.

Kate describes a personal conviction and an academic upbringing that centers community perspectives and community self-determination in the formation of sociotechnical systems. Through centering the least empowered, researchers like Kate have to learn to expect, and even embrace, uncertainty and unpredictability. As technology researchers, it can be disconcerting to approach a project when there is no clear specification for a technological solution. I asked Kate to tell me about some of her own experiences with the unexpected. Ironically, I was completely unprepared for Kate's answer.


It is my hope that my research findings help not only the research community, but also the community I am doing the research with. — KATE RINGLAND


The one time a project did not go as I expected was actually a project where I was not working directly with disabled community members. I was working with a group of people who were responsible for the care of disabled community members. The reason this did not go quite as I expected was that I encountered some very deeply ingrained ableism. This is not to say ableism does not also happen within disabled communities, because it does, but I had never experienced such a large amount of direct verbal attacks on myself, as someone with an invisible disability. This community member did not know that he was speaking directly about me at the time, but it still left me deeply shaken and it has taken me a very long time to analyze the data from that project.

I was expecting a story about an unusual interaction between a participant and a technology. Despite the fact that I myself have written about epistemic violence in research, and despite the fact that I have experienced ableism in the research lab, it seems these painful stories always catch us by surprise, even if they are not unusual.

Kate also told me how she navigates the space between her research responsibilities and her devotion to community-centered work.

I do my best to check in with community members with my findings before publishing. It is my hope that my research findings help not only the research community, but also the community I am doing the research with. To that end, I not only member-check, but I also create accessible versions of my works in order to make sure they understand my conclusions. Doing this has not exactly changed my work post-community comments, but it does shape the kinds of analysis I do in the first place. I want my work to be community centered—because at the end of the day, this is not about me; this is about how my work can help the community forward.

Kate's story highlights the complex articulation of the disabled disability researcher. While her position as a researcher lends her some authority over what constitutes supportive assistive technologies, her identity as a disabled person complicates the audiences in which her expertise is respected. And though she experiences discrimination and stigmatization as a disabled person and as a disabled researcher, she still holds narrative power over research inquiry and data interpretation. Kate understands that participant communities are personally impacted not only by direct research interactions, but also by the discursive exchange between research interpretation and public perception.

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Though these conversations are presented in a linear way, we encourage readers to explore the multithreaded narrative connections between them, and we especially encourage HCI researchers to consider their own articulations within their research space. Tiago's chance encounters with people and projects became formative in his career. Arne's position as a meta-researcher, a sociologist studying the practice of engineering research, lends perspective that is unique to his experiences yet possible to trace in many other situations. Mahi's experiences with taking up "abandoned" work, with finding serendipitous benefactors, and with exploring designs in the wild give a sense of the tenuous reality of infrastructure outside the lab. Amelia's work with data and information equity makes it possible to imagine a more holistic understanding of communities as nested and entangled—not closed systems. Kate's story reminds us that our research subjects are also our peers, and there is irreplicable value in the counternarrative research that disabled people conduct and the futures we imagine.

We present these stories of research articulation, of researchers as articulated, and as researchers articulating, gesturing toward a crip HCI. Disability is a plural, fluid, transitory, embodied cultural experience. While crip theoretics of HCI are best shaped by disabled scholars, a crip practice affords and demands a broader uptake. The particulars and nuances of a crip HCI are still forming among the disabled HCI researchers in collaboration today. However, this practice of articulation within disabled community, disabled space, and disabled consciousness is an essential and ongoing process toward a more equitable, more just, more humane HCI practice.

back to top  References

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back to top  Authors

Rua Williams is an assistant professor in computer graphics and technology at Purdue University. They earned their Ph.D. from the human-centered computing program at the University of Florida's Department of Computer and Information Sciences and Engineering. Rua is studying interactions between technology design, computing research practices, and disability justice. rmwilliams@purdue.edu

Kathryn Ringland is a UC President's Postdoctoral Fellow at the University of California, Santa Cruz. She received her Ph.D. in informatics from the University of California, Irvine. Her areas of interest include human-computer interaction, games studies, and critical disability studies. kringlan@ucsc.edu

Amelia Gibson is an associate professor and director of the Community Equity, Data and Information Lab at UNC Chapel Hill. She studies health, wellness, and information practices and access in local communities and on the Internet, particularly among people of color, teens and young adults, and disabled people. angibson@email.unc.edu

Mahender Mandala is a user experience researcher with a focus on developing technologies that allow equitable participation of users with all abilities. He utilizes user-centered and participatory design research to build experiences that broaden the participation of diverse individuals. His work spans the domains of healthcare and education. mandala@gatech.edu

Arne Maibaum is a Ph.D. candidate in sociology at TU Berlin researching robots and robotics in social contexts, especially in care settings. arne.maibaum@tu-berlin.de

Tiago Guerreiro is an assistant professor at Universidade de Lisboa (Faculdade de Ciências] and a researcher at LASIGE. His research on accessible computing and pervasive healthcare is done embedded in the communities he collaborates with and is characterized by long-term deployments and iteration of prototypes with target users. tjvg@di.fc.ul.pt

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