Shaun Kane, Amy Hurst, Erin Buehler, Patrick Carrington, Michele Williams
A major goal of assistive technology research is to develop technological solutions that solve problems faced by people with disabilities. Building healthy collaborations between academic researchers and individuals with disabilities is key to achieving this goal. Many assistive technologies are abandoned by their users, and evidence suggests that users are more likely to stick with an assistive technology if they feel they are actively involved in the creation or selection of that technology . Furthermore, many believe that people with disabilities should also participate in the development of policies and technologies related to disability. This desire to remain an active participant in issues involving disability access has been promoted within disability rights communities via slogans such as "nothing about us without us" .
It is clear that creating usable and acceptable technologies requires participation from those who might use them. However, recruiting research participants can be difficult across all types of HCI research, and may be especially difficult when conducting research with people with disabilities. Locating, recruiting, and working with participants with disabilities presents several challenges. First, when dealing with any specialized population, there are simply fewer potential participants to work with. Second, transportation to and from research sites can be difficult for people with disabilities, especially when publicly accessible transit is limited. Finally, while people with disabilities may gather at schools or community centers, conducting research in these locations may be challenging due to administrative policies or institutional review board (IRB) restrictions.
Our research group, the UMBC Prototyping and Design Lab, focuses on designing, building, and evaluating new technology to solve problems faced by people with disabilities. Our faculty and students come from various disciplines, including human-centered computing (HCC), engineering, design, aging studies, and psychology. Since 2011 we have conducted a number of research projects that address challenges faced by individuals with many different types of disabilities, including people with visual impairments, people with aphasia, and students with intellectual disabilities.
Here, we describe our experiences in building partnerships between our lab and communities of people with disabilities, and in including people with disabilities as active participants in our research process. These partnerships have extended beyond the duration of individual research projects and guide the ongoing and future work of our research. We also describe challenges that we have encountered conducting this research, and identify opportunities for improving future interactions between academic researchers and people with disabilities.
We have explored several approaches to engaging with individuals with disabilities as research partners. Our goal in experimenting with these approaches has been to maximize the contribution of our research partners while minimizing barriers to participating in research. While these strategies are not novel, we hope our reflections on these experiences will be informative to researchers who work with specific populations.
Developing research partnerships through clinical internships. We have found that one of the best ways to learn a lot about a specific user population is to find out where they spend their time and then find a way to be there. Many of our students volunteer within local community organizations in order to learn more about a specific user population. A successful example of this approach is the work of Patrick Carrington, a Ph.D. student in HCC. To better understand the real-world challenges faced by power wheelchair users when operating computing devices, Carrington spent the summer of 2013 working as an intern rehabilitation technician at the Kennedy Krieger International Center for Spinal Cord Injury (ICSCI) in Baltimore, Maryland. The ICSCI has a seating and mobility clinic where patients' needs are assessed and where they are fitted for wheelchairs, if needed. During the internship, Carrington assisted with seating clinic appointments and with physical and occupational therapy sessions. Through this experience, he learned a significant amount about problems experienced by wheelchair users from a mobility perspective, and about the wheelchair-fitting and rehabilitation process. This immersion in the community has helped to build trust and develop relationships with users and practitioners in the area of assisted mobility, which has led to additional research and collaboration in the area of technology for power wheelchair users.
Creating design teams with external stakeholders. In some cases, a user population does not congregate regularly at a specific location. In other cases, it may be useful to work with a group of users outside their regular meeting context. In these cases, we have explored creating design teams made up of individuals with disabilities.
HCC Ph.D. student Michele Williams has taken this approach in her research, which explores navigation challenges experienced by individuals with vision impairments. She has formed a design team of eight adults with vision impairments who meet monthly to share their experiences and participate in design activities related to accessible navigation technology. Over the past year, this team has participated in semi-structured discussions aimed at understanding current navigation challenges, discussed the benefits and limitations of existing navigation technology, and engaged in interactive design sessions in which they created physical prototypes of new navigation devices, borrowing from traditions of participatory design (Figure 1). This long-term engagement has yielded several design artifacts that have been vetted by a diverse group. These meetings have also helped to create a friendly relationship between the design team members and researchers, which has added to the richness of the experiences and ideas shared in the team's design activities.
Engaging with students with disabilities in the classroom. In addition to working with individuals off campus, we are committed to helping foster an inclusive on-campus community. We have participated in the UMBC SUCCESS (Students United for Campus Community Engagement for Post-Secondary Success) program since its inception in 2012. SUCCESS is Maryland's first four-year, post-secondary opportunity for students with intellectual disabilities; it offers students a chance to learn career and life skills through courses and internships. Every semester, students in this program take courses with degree-seeking students, including a first-year seminar course that focuses on teaching students about the breadth of research at the university. HCC Ph.D. student Erin Buehler has volunteered to serve as a teaching assistant for this course for two years. Through this work, Buehler has gained an understanding of varied learning styles and abilities, worked closely with students in hands-on projects, and helped inform the SUCCESS curriculum. These experiences have guided her developing research, which aims to support students and democratize educational resources utilizing accessible technology solutions. Our lab's faculty members have given guest lectures in the SUCCESS seminar course and have introduced students to HCI topics such as inclusive design, 3D printing, and programming.
Creating an inclusive lab environment. In addition to fostering research partnerships outside the university, we have worked to make our own research lab space an accessible and inclusive place in which to work. Over the past year, we have employed interns from several local job-training programs, including three students with intellectual disabilities from the UMBC SUCCESS program, and one student with multiple disabilities from a local blindness organization. These students have worked alongside other students and faculty to help code data and organize lab materials. While we are careful not to use lab interns as research subjects, the interns have been eager to get involved with research and share their opinions about our research and other technology. Recruiting diverse students, including students with disabilities, requires significant effort, but we have found that working with interns offers another way to bring individuals with disabilities into our lab community.
To further engage with young people with disabilities, and with the hope of encouraging such students to explore careers in computing, we also host lab tours for students and teachers from local school programs that serve students with disabilities. For example, for the past two summers, we have invited a class of computer science students from a local high school program for blind students to visit our lab and campus. During these visits, students talked with our undergraduate and graduate students about life on campus, participated in demonstrations of accessible 3D-printing technology, and learned about careers in computing.
We have also organized demonstrations of our work at large public events such as Maker Faire and the USA Science and Engineering Festival. While these events do not specifically target individuals with disabilities, they provide opportunities to share the importance (and fun) of designing accessible technology with a broader audience.
Our lab has found numerous ways to include people with disabilities in our research: as research participants, design team members, and lab collaborators. We hope that sharing our experiences will benefit other researchers and help to create new partnerships between academic researchers and groups of people with disabilities. However, we have encountered challenges in conducting this work and have identified opportunities for building stronger partnerships between HCI researchers and individuals with disabilities.
First, students with disabilities remain underrepresented in higher education, especially in STE M and computing fields . Our research group, and many others, would benefit from the participation of more trained researchers with disabilities. Fortunately, many organizations are working to increase participation of students with disabilities in STEM and computing fields. Programs such AccessComputing, CMD-IT, and the National Federation of the Blind's STEM-X program are working to increase the participation of people with disabilities in computing via scholarships, internship programs, and mentoring events. While we have brought people with disabilities into our lab space through internships and outreach, we believe that our research community will be further enriched by greater participation of people with disabilities, and strongly support efforts to increase the number of students and researchers with disabilities in computing.
Second, while we have been successful in developing research partnerships with local disability organizations, these organizations are often too small to provide large numbers of research participants. We therefore run the risk of running out of participants, or creating "career participants" who do not accurately represent the broader population. One way we have addressed this issue is by working with multiple community groups on a project, for example, testing accessible tactile graphics with both students at our local school for the blind and professionals in blindness community centers. Another approach is to develop accessible technology that can benefit multiple user groups. For example, our research in creating 3D-printed tactile graphics can potentially help both students with vision impairments and students with learning disabilities, who may be multi-sensory learners.
Finally, as our research involves developing technology to address existing accessibility problems, research partners often ask when this technology can move from the prototype stage to a commercially available and supported product. Our lab has also received many requests to produce specific devices or applications to solve current accessibility challenges, such as creating a lower-cost version of a commercially available mobile application, or printing existing 3D models using our lab's 3D printers. As these requests are not connected to ongoing research projects, we sometimes lack the resources to satisfy them. In some cases, such requests may be satisfied by organizations such as V-LINC, which pairs volunteer engineers with individuals with disabilities to create solutions to accessibility problems. However, there exists an opportunity to more closely pair academic accessibility researchers, who encounter many accessibility problems, with engineering and design partners, who may have more resources to create solutions to general accessibility problems.
When conducting accessibility research, it is important to involve individuals with disabilities throughout the research process. However, there is no one-size-fits-all method for involving people with disabilities in HCI research. Our approach has been to work with each user group to find the right forms of collaboration, and then to develop long-term partnerships that extend beyond individual projects. Furthermore, we make an effort to work outside the lab in locations that are familiar to our research partners. Working outside the lab enables us to spend time with our research partners in settings in which they are comfortable, and to observe real-world accessibility issues that might not surface during traditional interviews or lab studies. By developing collaborative partnerships between our research lab and the user groups with which we work, we may increase our ability to identify and solve real-world accessibility problems.
Shaun K. Kane is an assistant professor of information systems at the University of Maryland, Baltimore County. His research interests include assistive technology, input and interaction techniques, and mobile human-computer interaction. firstname.lastname@example.org
Amy Hurst is an assistant professor of information systems at the University of Maryland, Baltimore County. Her research interests span assistive technology, context-aware computing, and interaction design. email@example.com
Erin Buehler is a Ph.D. student in human-centered computing at the University of Maryland, Baltimore County. She is engaged in both teaching and research. Her work focuses on accessible technologies to support special education. firstname.lastname@example.org
Patrick A. Carrington is a Ph.D. student in human-centered computing at the University of Maryland, Baltimore County. His research interests include accessibility, assistive technology, and multi-modal and natural user interfaces. email@example.com
Michele A. Williams is a Ph.D. student in human-centered computing at the University of Maryland, Baltimore County. Her research focuses on assistive technologies for people with vision impairments. She has seven years of industry experience as a VUI designer and accessibility analyst. firstname.lastname@example.org
Figure 2. Erin Buehler serves as a teaching assistant in the UMBC SUCCESS seminar, an integrated class featuring students with intellectual disabilities working alongside mainstream undergraduate students.
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