Accessibility is often focused on how to design and build digital products or physical spaces. But understanding the people with disabilities who will use those products is just as important. Enter ethnography and the importance of research that goes “face to face” with real people in the real world.
Frances Harris is a medical anthropologist who works with people with disabilities to explore the social, economic, and political contexts of their lives. Her projects look at how to make people’s lives and working situations easier and more accessible.
Frances joins Whitney Quesenbery for this episode of A Podcast for Everyone to talk about ways to understand the lives and how to design for people with disabilities. They talked about:
- Conducting ethnographic research with people with disabilities
- Understanding the complexity of people’s lives
- The intersection of the outside observer and the inside perceptions
- Privacy and independence and how they are perceived
- Barriers to voting for people with disabilities
Frances Harris is a medical anthropologist at Center for Assistive Technology and Environmental Access (CATEA). Her current work investigates how better assistive technology and workplace accommodations can affect health, activity and participation in social and work activities. She received her PhD from the New School for Social Research.
Resources mentioned in this podcast
- Center for Assistive Technology and Environmental Access at Georgia Tech (CATEA)
- “Understanding Voting Experience of People with Disabilities” by Jon Sanford, Frances Harris and others
- Training course for poll workers
Whitney Quesenbery: Hi, I’m Whitney Quesenbery, I’m co-author with Sarah Horton of “A Web For Everyone.” Today, I’m talking to Frances Harris. She’s a medical anthropologist, whose research focuses on people with disabilities. She’s part of an amazing team at CATEA. That’s the Center for Assistive Technology and Environmental Access at Georgia Tech.
Hey, Frances, thanks so much for joining us.
Frances Harris: Hi! It’s my pleasure.
Whitney: Lovely to talk to you. We have so much to talk about, but I want to start by asking you about what it means to be someone with anthropological training in the work you do.
Frances: Unlike traditional anthropologists, whose methodology has historically relied on participant observation, I work more as a qualitative researcher, which is a term that was coined, I think, back in the ’80s to distinguish researchers from quantitative researchers. It differs from anthropology, which is more grounded in theory and history.
Qualitative research borrows research techniques from a variety of social sciences, including anthropology.
As an anthropologist, working in disability, I do mostly semi-structured and open-ended interviews. The research questions of a particular project tend to guide the development of an interview script. The anthropology side of my research is in my interest in context — the social context, the economic and political.
I don’t always get to use that data during an analysis, especially when I’m involved in a quantitative study, but it can set the stage for thinking about meaning. For example, what voting or disability has for different people. How they live their experiences as a person with disability, or as a voter, in the context of family, social relationships, work, politics, et cetera.
Whitney: Do you think that it makes a difference when you’re interviewing someone that you’re in their context?
Frances: Do you mean in person interviewing? Oh, yes!
Whitney: Not just in person. Do you think it makes a difference when you’re interviewing someone, not just that you’re talking to them face-to-face, but that you’re actually going places to where they live or work?
Frances: Oh, yes. That is closer to a traditional methodology of anthropologists, called “participant observation.” When you’re doing interviews and you’re getting to know somebody, the quality of the data you get is really only as good as your ability to establish a relationship with them. That’s much easier if you’re face-to-face, or if you’re actually in the place where they are. Observing and talking to them in the context of the activities of their daily life, or the activities that you actually want to examine.
Whitney: So you’re getting more information than just what they say?
Frances: Yes. One of the great things about participant observation is you can observe the differences between what people say they do, and what they in fact can be observed doing. I don’t mean to say that there’s some dissemblance or deceptiveness going on, but people’s meanings change. There can be a discrepancy between verbal reports and observed behavior for a lot of reasons.
People may be a little fearful because of social or legal consequences. Memory is selective. People can repress certain aspects of their behavior that they may be embarrassed or reluctant to talk about.
Whitney: I had a really good example of that recently. We were working with people who use screen readers, and watching them try to use a website. There were people who were very experienced with their tools and people who were new to their tools. One of the women…It was a little painful watching her work, because she really was still learning the tool, and she had to work very slowly.
At the end of it, we were all like, “Oh!” I felt like I’d been mean to her by making her do all this work. She said, “Isn’t it wonderful that I can do this myself?” Because her vision was going. She could see the navigator on the screen, but not see well enough to read. She had this mix of navigating with the mouse, but also using the screen reader to read to her.
To her, she had been a professional. She was losing her ability to read the screen. She thought her days of computing were over, and so her attitude was completely different than ours watching her.
Frances: [laughs] It’s very interesting to see the complexity of people’s social lives. It’s difficult to envision, let alone to articulate what those complexities are, so the observer will see one thing and the person may be experiencing quite a different thing. That meaning is so important. It’s sort of the heart of anthropology and most social science research.
Whitney: The meaning is in the intersection of this outside observer and the inside perceptions?
Frances: Yes. In one sense it is, yes.
Whitney: How did you get involved in working with people with disabilities as part of your study?
Frances: [laughs] Actually, it’s kind of weird. I was an English major in college, for most of my college life. I took a survey course in anthropology and was instantly smitten, and changed my major on the spot. I got my PhD pretty late in life, and I wasn’t sure what to do with it. I read an ad in a paper that said, “We’re looking for a research assistant to work with people who use assistive technologies,” at an acute rehab hospital here in New York.
I didn’t even know what assistive technology was, and I knew very little about disability, which was very undeveloped in anthropology at that time. They hired an anthropologist to work on a quantitative study. I had never taken statistics before, and knew very little about it.
While I was doing the study, they were intrigued by the idea of an anthropologist and I was allowed to do some interviews. Those actually helped the quantitative part of the study. From then on, I just couldn’t stop reading about disability.
Whitney: Tell me about some of the projects you work on at CATEA these days?
Frances: One of the projects that we’re working on, or that I have worked on and still am, is looking at how people who use wheelchairs part time and use other mobility devices. How they integrate them into their everyday lives. Clinicians very often have to prescribe multiple technologies. Sometimes they don’t use their wheelchairs, and one of the reasons…They wanted to explore what those reasons were.
I’ve been interviewing people at the VA in North Carolina, who live in very different kinds of circumstances. How they will use a walker, when and why, and switch to a cane. Then when do they use their wheelchair. This information is designed for clinicians, basically, to help them prescribe mobility devices with greater accuracy and give them the best care they can.
I’m also working on a project that is looking at the universal design practices in workplaces. We’re developing two surveys. One for people with employees, to look at their sense of inclusion and participation in the workplace.
Another survey is being developed for the employers or supervisors. We’re trying to look at the relation between accommodations, providing accommodations to a person with a disability, which is the more traditional way of addressing disability in the workplace, and the usefulness of universal design principles.
Whitney: Let me unpick this a little bit. Give me an example of an accommodation?
Frances: An accommodation might be a screen reader. It could be a voice-activated computer device that would help somebody who didn’t have the use of their hands. It could be an adjustable table that would allow a wheelchair to scoot underneath it. It’s usually in the form of a device, but it can also be an adjusted work schedule.
It can be allowing someone to do telework from home on certain days. What it is, it’s an individual accommodation instead of creating an environment where everybody can work.
Whitney: This is something that’s done specially for one person, as opposed to something that benefits everyone?
Whitney: Give me an example of how one of those might be changed into a universal design approach.
Frances: For example, for wheelchair users, hallways could be wide enough, desks could be at adjustable heights, doorways can be wide enough. Accessibility into a workplace, parking areas, and being able to maneuver into a building can be done so that they can enter the building with every other employee.
The idea is to create a seamless environment, so that there’s little distinction between people with disabilities and people without disabilities.
Whitney: If you have an adjustable height desk, that’s fine at your desk, but it means you can’t work at the conference table.
Whitney: I met you a few years ago. We’re going to indulge a little bit of my obsession with elections. I met you a few years ago when you did this really great study of the voting experience for people with disabilities. Full disclosure, I actually was the coordinator for this grant from the Elections Assistance Commission.
One of the reasons I was so excited about this project was that most of the work trying to understand the voting experience of people with disabilities has been in quantitatively, through surveys and looking at census, and actually data. Your study was one of the few that really looked more deeply at the actual experience.
Voting is such a private activity. How did you do the study?
Frances: We recruited people from a number of places. We wanted to get a very wide range of voters with disabilities. All different disability types, from mobility to vision to hearing. We started recruiting from the CATEA consumer network at CATEA, which is a listserv, or a roster, of about a thousand people with disabilities who would like to participate in research.
We also posted invitations to participate on community and disability listservs, also in dependent living centers. We used both interviews and observations. That was an especially fun study to do, because we did get to observe as well as to interview. We did those during the 2011 and 2012 elections.
Whitney: What did you do? Go to the polling place with people?
Frances: Yes. A researcher would either meet a subject, a voter, at the polling place, or they would travel with them. The voter would vote. The researcher was not allowed to assist, but they observed the voter’s interaction with voting machines, with poll workers, with the entire election polling place process. Then directly afterwards, they were interviewed about their experiences, which was very helpful.
Whitney: What did you learn?
Frances: [laughs] We learned a great deal. We interviewed about 50 people. When we looked at the data, we acquired a tremendous amount of data. We found three basic categories that people were concerned about and address in the interviews and in the observation of interviews.
What was the social environment of polling places and that was dominated chiefly by co-workers. We look at the facilitators and barriers. What made it easier for people to participate in the voting process and what hindered them?
Sometimes, the facilitators and the barriers were the same. For example, friendliness and courtesy was considered to be a great facilitator. A knowledge about voting procedures and technology was also considered to be a great facilitator. At the same time, the lack of knowledge about voting procedures of technologies was also cited as a chief barrier.
A second thing that emerged was pre-election information about valid issues or location of polling sites, registration procedures, and how to use the voting machines.
The primary barriers included to help you find information of candidates, the accessibility of the precincts and the voting machines, and inconsistent information where you get information from one source and from another source.
The importance of the pre-election information was one of the things that made some voters want to vote absentee as opposed to go into the voting place.
A third barrier that emerged was the physical environment of the polling places. This has been address probably more often in the literature. People look at the architectural and community factors. The accessibility of the polling place, its location compare to their home, was there sufficient space inside the polling place.
Adequate signage and posters? Were voting booths set at the right position for somebody with the wheelchair? Those kinds of things.
The level of detail about the physical environment was a very detailed list of things that could act everything from audio output to adequate and adjustable fact size. As I said, the physical environment was not just people’s mobility, disabilities but vision hearing, cognitive, manipulation.
When we also analyse the data, it’s very interesting. We found four major things that emerge from the interviews and observation. One was the importance of sense of inclusion in the voting process. Most of the people that we interviewed tell a strong civic responsibility to vote and they also viewed it as one way for their voice to be heard and to change some of the political attitude towards people with disabilities.
The other few things privacy, and independence and all of this are interconnected. Privacy, independence and stigma with the last three needs.
Whitney: One of the questions I was wondering about and I love to ask you is, how does what you learn by deep diving into something like voting give you insights into broader daily experiences that we could use for other kinds of products we’re working on?
Frances: I think elections are extension of many of the challenges of daily life for people with disabilities. To my knowledge, there’s been a little anthropological attention paid to them. Just like every other aspect whether it’s people’s workloads or family life, elections and daily activities reflect people’s attitudes and vice versa.
This is how the meaning is created. Privacy can have very different and sometimes contested meanings in voting, for example. The location of voting votes was so much conscientious and interpreted differently.
One voter like it when voting machines were segregated from voting machines for people without disabilities because it gave her quiet and that sense of isolation, gave her more time and more quiet and peaceful environment to voting.
Somebody else felt that she was being segregated from other voters and that she was being excluded. She was concerned that her vote would not be counted. The same commendations to a person with disability can play out very different. Their meanings and interpretations, and their attitudes can vary.
Whitney: One of the things I’m hearing is that we should be very careful not to treat people disabilities as though they’re one big user group that has all the same attitudes?
Frances: Exactly. Privacy and independence are all very important things that they can be interpreted quite differently.
Whitney: The other thing that I notice is talking to someone about a project who’d work on making bank machines accessible and they said one of the things that’s interesting is that it’s not like people with disabilities didn’t have cash before. They have a way to get cash and it takes awhile for them to transition to using a new solution because they need time to check it out.
Trust that it’s going to be better than what they’ve been doing before so it’s not just making an accessible all. It’s making it a better experience than what you have before.
Whitney: I want to turn to some practical questions because I know that the whole question of doing more ethnographic research really hot topic that you actually place, but often people don’t know how to get started. I want you to start by picking up on something you said about the voting project, which was you talk to 50 people. That’s a huge number of people.
Frances: Yes. We have a staff of six. It wasn’t just me.
Whitney: So you split that up in a number of people because one of the assumptions about ethnographic work is that it’s very small numbers. What I’m hearing is that it doesn’t have to be.
Frances: No. If you have a large research staff, you can follow and interview and observe many, many more people. If it’s over a period of time, if you have a year to spend with people you can observe many more people. When people go into the field to do participant observation in the city or on a reservation, you’re usually observing and interviewing many, many people over that period of time.
Whitney: Is this something that…Let’s say you run a UX department for a big product, is this something that you could do a little bit of the time over a longer period of time and just wrapped it into all your other work?
Frances: That’s interesting. Yes, I think that would be possible. There needs to be certain continuity, that continuity that doesn’t have to be in terms of everyday. If you’re in a place, in a business place, where it’s a large population and you have other things to do, yes, you can integrate it. But you would still need to focus on those questions specific to that project.
Whitney: If UX researchers want to include people with disabilities in their research, one of the things that everybody worries about is, “How do you get started?” Do you have practical advice, tips about recruiting or effective working styles that you can help people with?
Frances: First of all, recruit from as many places as you can — disability organizations, hospitals, independent living centers, colleges. You can also use a technique called snowball sampling, which is you ask the people you got your interviewing or doing research with if they know somebody else who might be willing to talk.
One of the reasons you want to do this is that many people who volunteer for research projects have a heighten consciousness and want to do something to improve their lives and the lives of others with disabilities.
This is great, but you also need to find people who are more isolated and hidden, hard to find. They provide a greater range of information and insights than people who have a more heightened consciousness. Another reason you want to have a very wide range of subjects, as wide a range as you possibly can, is to establish a working relationship with the subjects.
As a matter of fact, the word “subjects” is slightly contentions right now. I use them. I use that term in quantitative research. But in qualitative research, it’s not such a great term to use. Subjects reflect an inherently passive role in a research project. Researchers administer questionnaires that are designed by the research. They analyze results.
They do lots of things that confirm the expertise of the researcher. But, in reality, subjects are the experts. They have the knowledge that we want to understand and use. The question that researchers and designers need to ask themselves is, “How do we find out what they know?” It’s as much an attitude towards research and people. It has implications for how we define our research goals.
Whitney: I was about to say it sounds like a big shift in your attitude about your research. It shifts from the, “I am the person in the white coat studying things” to “I’m engaging with people as I work with them.”
Frances: Exactly. There is something called — I don’t know how familiar people are — participatory action research, which is a research approach that became increasingly popular within disability studies. It looks at the researcher-subject relationship.
Unlike the traditional research model, which pretty much renders a subject as a passive object of study, participatory action research proposes a collaborative relationship between the researcher and the subject. When it’s applied as a strategy, it really challenges researchers to adapt and incorporate subjects’ voices into their study design and methods.
When you’re looking at, for example, designing ANDI user or research products, it’s useful to incorporate people with disabilities, their views, their identification of research questions, and problems, and goals right from the beginning. The research should be collaborative and iterative throughout the entire process.
They can be included in developing the methods. You could do [inaudible 21:35] focus groups through interviewing and in project meetings so that their voices are consistently being heard throughout the process.
Whitney: What you’re saying is that it’s not just that you sit back in your office, you think of a research question, and you think about how you are going to do it, but you actually build the research question through research?
Frances: Right. That requires a working relationship with the people that supposedly you want to study or develop something for.
Whitney: I’m sitting here looking at a sign in my office, a poster that says, “Design with, not for.” It comes out of the civic design movement. But I know one of the early mantras of the disability rights movement was “Nothing About Us Without Us.”
Frances: Absolutely. People with disabilities had been studied by medical and health care workers for many, many years. The field of rehabilitation looks at disability primarily as a health, and medical, and functional problem. But disability is also defined socially.
Whitney: Let me do this analogy. If I was working on a mobile device, a mobile app for instance, I might be interested in how someone manipulates the device, what do they click on, what do they tap on, how do they use it.
But I also might be interested in when, where, and why they use it. That’s much harder to do by hauling someone into a research room and asking them questions. You get a much richer picture if you actually watch them using it. You’re hanging out with them at the mall and you see when they pull their phone out to do something.
Frances: I think that there were some early studies on how people used computers. Observers went into the home and found out that computers were not being used just by individuals but by families, and all at once. That changed how computers were marketed, from what I understand, since early on.
Whitney: One of the things that we’ve said a lot is that we need to build relationships. I know that a lot of UX research is done by recruiting through ads in newspapers or mailing lists and so on.
But I’m hearing you say that, in order to do this deeper research, you need to get a little deeper, that is, you need to actually find the independent living center, and maybe go down and meet them, and put in a little groundwork upfront to build a relationship with a community.
Frances: Yes. That’s absolutely essential, both from just pure social science research, but also for designing. Watching people work or do something in the context of their everyday activities is critical to understanding what they really want, what they’re really using it for, and what they need, how to make it better.
Whitney: Is there a middle ground? One of the suggestions that I’ve heard is that, instead of bringing people to your office or to your research lab, you could go someplace. You could go to the LightHouse for the Blind, which has social centers, or you could go to an independent living center.
You’re still not quite in their home environment, but you’re in an environment where they’re comfortable. Does that make a difference?
Frances: Completely. As I said, you need to establish a relationship with people, and part of that is making them comfortable. As a researcher, you’re not going to be able to establish a great relationship with everybody.
But one of the things you can do is to take them out for a cup of coffee or offer to meet them in a place that they’re the most comfortable in, and allow them, also, to guide the conversation to a degree.
You’re coming in as a researcher desiring certain goals. But they have things they want to tell you. One of the most important things about establishing that relationship is learning how to listen.
For example, in the voting project, when I was interviewing home workers at one time, they would say, “Oh, we don’t have any people with disabilities come to our polling place.” That’s because they were thinking of disability as a wheelchair, just somebody in a wheelchair, or somebody with a white cane.
But then you would get them talking, and you would find out there was somebody there with a hearing aid or somebody who had recently come back from Afghanistan who was jumpy. These are the kinds of issues that you’ll get when you establish a relationship and get people talking.
Whitney: One of the things that scares a lot of people about working with people with disabilities in their research is that they’re afraid they’ll say something wrong, or insult somebody, or just be hapless. Any tips?
Frances: First of all, there is a disability etiquette. There’s plenty of information about that on the Internet, but I wouldn’t worry about that.
People with disabilities value, from what they’ve told me, the effort to be courteous that they may make a mistake. But I think they’ve seen it all, and they’ve done it all. They appreciate the effort to be kind and courteous even if they make a specific mistake.
Whitney: So be human?
Frances: Yes, be human, be kind, offer help just as you would to anybody. Don’t be afraid of making a mistake.
Whitney: Does it get easier?
Frances: To not make a mistake? [laughs] Yes, because people will tell you. I think intuitively, when I first started talking to people who used wheelchairs all the time, I would sit down. I later found out that that was considered something courteous.
But then I would watch people occasionally touch somebody’s wheelchair. You could see that it was as if somebody had touched their head or some part of their body. You realized that was a no-no, after a while.
Whitney: You can think about what reactions you get and build on those?
Whitney: You talked about how many different kinds of disability there are and how many different kinds of people with disabilities you’ve worked with. Do you have to adjust your research plan or how you actually conduct the research to accommodate different kinds of disability? How do we factor that in?
Frances: I did a research project looking at how teleconferencing equipment was used for business meetings by people with cognitive disabilities. What was interesting is that we used teleconferencing as the basis for how we conducted the focus group.
You were able to have people articulate why, their reactions, and the problems they were having using the equipment as you were actually asking them about what context they use, teleconferencing, and why they liked it and disliked it.
I’ve worked mostly with people with mobility impairments. I have not worked with anybody with a vision or hearing impairments, but I have worked with mobility and cognitive. There is an overlap.
With people with cognitive disabilities, there’s patience giving people time to process information in different ways. Yes, there are different ways of approaching, I would say, research with different types of disabilities.
Whitney: So just as you need to approach each participant as a person, you need to adjust your own personal style to meet them?
Frances: Yes, absolutely. Cognitive disabilities, for example, is a huge category. It can cover everything from autism to how people process knowledge, dyslexia. It’s useful if you have a sense about what their issues are. But otherwise, again, it’s just a matter of being patient, and giving people time, and asking them what they need.
That’s another thing. We shouldn’t be afraid to ask people what they want, or, “What’s the best way to approach this research?” or, “This is what you want to do?”
Whitney: After all, you’re hauling them in there to ask them a whole bunch of questions anyway.
Frances: Exactly. [laughs] What makes them the most comfortable.
Whitney: We’ve been talking a lot about how you do your work and why an anthropological approach or an ethnographic approach is so useful. Can you give me an example of how a designer might take all this information and where it might lead them in their design process?
Frances: It allows the designer of research to see the unintended impact a meeting, a device, or a behavior, or a product may have in different context. You can observe how an idea can change or morph into an unintended use.
There’s an expression that’s always been important to me. It was coined by William Gibson, who was sort of the elder statesman of cyberpunk. He wrote, “The street has its own uses for things.” One of the most obvious examples is the Internet itself.
The Internet was originally conceived as the network for researchers to exchange scientific information. Instead, it’s become this rapid communications medium and a means of establishing non-geographical communities. It contained a lot of exploitable niches that are still being developed, but which were unintended by its original developers.
Whitney: You can see hints of that. You can look at how somebody has done something just for themselves and think, “Wow, this something that could be a broader product.”
Frances: Exactly. The point is when you’re observing a person’s behavior or interviewing them, you need to anticipate myriad ways in which an activity or device can be made useful or meaningful to a person.
Whitney: That is a great way to end. Thank you so much for joining us, Frances. This was a wonderful conversation.
Frances: It was my pleasure. Thank you.
Whitney: To our listeners, we’ll be posting links to any of the projects or resources that we’ve discussed today. You can find them on the A Podcast for Everyone page on Rosenfeld Media and in the UIE All You Can Learn library.
Thanks to you for listening in, and a special thanks to our sponsors, that’s UIE, Rosenfeld Media, the Paciello Group, and O’Reilly, for making this series happen. Be sure to follow us at A Web for Everyone on Twitter for information about future podcasts.