10 Ways Designers and Researchers Can Meaningfully Engage With Disabled People in 2023
It’s often a lot easier to explain what not to do when it comes to disability engagement in research and design, than to tell people what they should be doing. Even though an estimated one in five adults in the United States are disabled, and the design field has made in-roads when it comes to (certain kinds of) web accessibility, there still aren’t a lot of examples to point to of what “good” disability-engaged design research and UX looks like.
Adding to this challenge is that doing good disability engagement in design often means making changes to established methods and processes, which is one thing when you’re working as part of a small startup team, and something else entirely when you’re working with a cross-functional team at a large enterprise that is navigating countless other projects, procedures and organizational priorities.
In my work leading research at The Disabled List, I spend most of my time walking this particular tightrope, with the added challenge of being an external consultant who has to quickly familiarize myself with all of those organizational dynamics in order to provide useful advice.
Drawing on my experiences managing a number of research projects across the tech, creative and educational sectors over the past year, here are 10 concrete things designers and researchers can do to make their engagement with disabled people more effective in 2023.
1. Involve Disabled People From the Very Beginning
That means bringing them before you have locked in your design problem or research questions. “Co-design” is supposed to mean that community members, such as disabled people, are treated as collaborators. But these community members are often only brought in to collaborate once the problem, scope and research questions of a project have been defined. They are brought in to supply data, but are rarely invited to analyze it, or critique and refine the synthesis. That isn’t genuine collaboration; it’s using them to rubber stamp the design team’s preconceived interpretations about what their lives are like and what they need.
This approach isn’t just disrespectful to disabled people and their unique expertise; it leads to wasted time, effort and resources. When nondisabled designers and researchers decide what problems disabled people need them to solve, they end up creating (and recreating) useless products that ultimately don’t get taken up.
2. Design Against Ableism, Instead of for (or With) Disability
In my practice, I’ve started advocating for something I call Designing Against. Most often when we talk about socially-oriented design, we talk about designing “for” something. Designing for disability. Designing for social innovation. Designing for health. Designing for justice. Designing for stuff we generally acknowledge is good and virtuous.
This approach does two things. First, it abstracts design problems from the social systems that are creating them. And second, it turns into a kind of feature creep. Our tendency when designing “for” is to try and solve problems by building something new and in doing so, we end up adding more and more features to the systems we’re working in and on, without addressing the structural issues that are causing problems in the first place.
When I say Design Against, I mean: whatever social issue or group you want to design for, identify the structural factors that are really, materially shaping those problems and design against those instead.
Instead of designing for trust, design against abuse and exploitation. Instead of designing for health equity or patient empowerment, design against medical racism and ableism and fat antagonism and misogyny. Design against the clinical gaze that says the only way to understand a sickness is to find the pathological lesion causing it. Instead of designing for rest, design against the things that prevent people from resting. Design against poverty and housing instability and hostile architecture.
3. Start Thinking About Power
This is probably the scariest entry on the list because the work we do, and the institutions and corporations we do it for, are all structured by power. And challenging established power structures is undeniably risky. But it’s also a necessary part of doing design and research that actually yields results, especially if you’re hoping for results that will draw in marginalized and neglected groups of users and customers.
One way to take the fear out of incorporating power into your design research framework is to recognize that thinking about power is really just thinking about systems. Power is what shapes the actions a person can and cannot take within a particular system. Understanding the range of possible interactions and their outcomes within a system is a crucial part of trying to create solutions for that system, so think of power analysis as part of your systems design toolbox.
4. Stop Ignoring Invisibilized Disability
I’m going to ask you to do something at this point. I’d like you to pause for a minute and write down as many example of design for (or with) disability as you can think of. It doesn’t matter how exactly they’re classified — universal, inclusive, barrier-free, adaptive, assistive — just whatever you can think of that’s a designed product, service or environment, created with disability in mind.
Next, I’d like you to write a second list beside your first one, identifying the categories or types of disability that were probably the focus of each of the examples in your first list. Again, don’t worry about being precise or getting the categories “just right.” Just write down who you think the designers of these things probably had in mind while designing them.
I’m going to make a guess here that most of the examples most of you came up with focus on what I would call hypervisible disabilities. The kinds of disabilities that are subject to overmedicalization — that society overall looks at as an inherent functional limitation. And what’s probably not very prominent on your lists are examples that address the distinct access needs of people whose disabilities tend to be invisibilized by the clinic and by society. People who experience chronic pain, chronic fatigue and brain fog. People who experience altered consciousness. People who struggle with temporal, rather than spatial access barriers. People with allergies, and environmental and chemical sensitivities.
There are an estimated 145 million people worldwide with long Covid, more than 200 million with fibromyalgia, more than 50 million with epilepsy, 17–24 million with myalgic encephalomyelitis and 3 million with narcolepsy. These are just a few of the clinical diagnoses that tend to be associated with invisibilized disability.
We call invisibilized disabilities “invisible” not because they are hard to recognize or easy not to notice. We call them invisible because society chooses not to recognize them. Invisibly disabled people are painfully familiar with being told that they are imagining or exaggerating their illnesses, or that they are causing them with poor lifestyle choices. And despite making up a substantial proportion of the “1 in 5” figure that is often cited as a reason for governments and business and third-sector organizations to care about disability, they are profoundly neglected even by brands that have sought to explicitly include disability in their marketing and product strategies.
5. Think About Accessibility in Terms of Time and Energy, Not Just Space and Matter
When we think about designing accessibly, we think in terms of spaces and physical things. One of the most effective ways designers could start engaging invisibly disabled people in their practices would be to start thinking about accessibility in terms of time and energy as well. Invisibly disabled people disproportionately deal primarily with things like fatigue, pain, hypersomnolence, cognitive and executive dysfunction — things that affect how you move in time, and how you interact with tasks and actions that take energy, rather than how you move in space and interact with physical objects.
Twitter has become a popular gathering space for chronically ill people, and a site for the production of chronic illness community and culture, in large part because of its design affordances. Its “digital public square” ethos is oriented to discoverability which makes it useful to those who are highly isolated in the physical world and not yet part of an established digital community. (As opposed to Facebook, for example, which consists of more discrete, insular spaces, where discovery happens more through established networks or targeted searches.) Its hashtags and trends function as “affiliative objects” that coordinate relational dynamics and thus facilitate knowledge-sharing and organizing. Its textual, brief, and mostly asynchronous format makes it uniquely accessible to many chronically ill folks with sensory, temporal and cognitive access needs, as well as neurodivergent and multiply marginalized folks who may be less comfortable with communicating through audiovisual media.
To create products and services that meet the needs of invisibilized disabled people, ask questions like:
- how can I provide access without requiring a person to do something or be somewhere at a specific time or within a specific timeframe?
- what are the steps involved in this interaction (including “hidden” cognitive steps) and how can I eliminate some of them?
- how does this interaction require users to expend cognitive or physical energy and how can I reduce those requirements?
- how can I limit the time this interaction requires from users?
6. Offer Remote and Asynchronous Facilitation
Design processes themselves are often temporally inaccessible. Interviews, workshops and co-design sessions have the default expectation that participants will be present in a certain digital or physical space, and engaging in physical or cognitive tasks, during a specific time period. Even recruitment processes involve a degree of temporal accessibility because they require a person to come across a call for participation “in time” to respond to it.
Consider how you can incorporate asynchronous modes of participation into your design processes. Can you set up a mailing list so that people interested in future co-design or research opportunities can be notified directly? Can you build temporal flexibility and deadline extensions into your timeline from the beginning? Can you offer to do interviews over instant messaging or email? Can you run a focus group on Slack or Teams chat? Can you provide workshop materials and interview questions in advance so that your participants have extra time for cognitive processing?
7. Be Deliberate About How You Categorize / Segment Disability
When design researchers decide to engage with disabled participants, one of the first questions they ask is, “What kind of disability do you have?”
This question — and the range of options provided to respondents — is powerful. It tells respondents how the researchers are thinking about disability. It also structures the data that researchers will be working with, shapes the conclusions they will draw, and the design choices they will make. Most of the design screeners and surveys I encounter offer up some version of the following categories for respondents to sort themselves into:
- Physical Disabilities
- Visual Disabilities
- Hearing Disabilities
- Mental Health Disabilities
- Intellectual Disabilities
- Learning Disabilities
There are many variations on this basic classification system. For example, “physical disabilities” may be broken down into “mobility disabilities” and “chronic illness,” or “learning disabilities” may be replaced by “cognitive disabilities” (which can be interpreted to include a much broader range of experiences, such as acquired brain injury or ‘brain fog’ resulting from chronic illness). But this variability rarely corresponds in any logical way to the apparent objective of the project.
I approach segmentation of disability by drawing on ethnographic and autoethnographic knowledge of disability to compile a list of access barriers that are likely to be relevant to the project I am working on. This can involve considering existing or proposed features of the service, system or product in question, and the potential access barriers they pose. I then thematically code these barriers into categories. Finally, I consider how to translate these categories into language that will be both concrete and flexible enough to resonate with the lived experiences of respondents when I distribute my screener. This means that, unless I am specifically concerned with how people identify, instead of asking “what kind of disability do you have,” I usually ask “which of these things are difficult or inaccessible for you?”
8. Reach the People Who Are Getting Left Out
Segmenting disability by asking about barriers and difficulties is also a useful way to reach people who routinely get left out of disability engagement. There are many reasons why people who are disabled may not identify as such, and these are often linked to experiences of multiple marginalization.
For example, a person may not feel entitled to claim disability identity because they have not yet received a diagnosis that “legitimizes” the ways they are struggling, while poverty and medical discrimination (including ableism, misogyny, racism, fat antagonism and cissexism) are all factors that can contribute to delays in accessing diagnosis. Some people may not feel safe or comfortable identifying with disability because of the violence or precarity they already experience due to other forms of oppression. Still others may simply not realize that their particular health conditions, support needs or struggles fall under the umbrella of ‘disability.’
Even those who do identify with disability may not recognize some of their access needs as such. For example, an informal poll of chronically ill and neurodivergent Twitter users that I conducted in 2021 revealed that even within disability-inclusive spaces, temporal access needs tend to be viewed as personal limitations, rather than things that can and should be accommodated.
Asking about access barriers, framing them as difficulties, and asking respondents to evaluate those difficulties in terms of how they affect their lives allows for designers and researchers to capture a much wider range of experiences and perspectives. In a recent project that I worked on, more than 30 percent of respondents who did not identify with disability or as having a chronic health condition nonetheless reported experiencing at least one relevant access barrier. (An access barrier was defined in this case as something that moderately or severely impacted their safety or their ability to do their work or to fully participate in their day-to-day lives).
9. Make Design Processes Mutually (and Comparably) Beneficial
I advocate for the recognition and adoption of lived and embodied expertise within professional and academic design. At the same time, I struggle with how that recognition and adoption often leads to exploitation. Design gets called inclusive when it recruits marginalized users, testers and “co-designers.” But these people do not receive the same benefits from their participation as the professionals who extract, commodify, and receive credit for their knowledge. The professionals who lead and facilitate a design process typically receive:
- stable income
- “valid” professional and technical experience (i.e. something you can put on a resume and have taken seriously)
- demonstrable research and/or design outcomes to put in their portfolio
- power to influence project agendas and priorities
Marginalized one-time participants receive none of these things. So for designers and researchers who sincerely want to support and empower disabled people, the question is: what changes can you make to your design (and hiring) processes, to address these disparities?
10. Stop Relying On Traditional Networking to Reach Disabled People
I’ve saved this one for last because it is the one that asks the most of you. In design as in so many other fields, recruiting and hiring — both for permanent roles and for research participation — happen largely through personal, professional and local networks. And this means that “disability inclusive” design processes are biased by their overrepresentation of certain disabled perspectives, while they systematically exclude some of the most vulnerable disabled people with some of the most important experiential knowledge.
To be someone who gets invited to things in disability design, scholarship and activism, you have to be someone who cultivates your own network. You have to DM with people regularly and have conversations that aren’t about a specific task or project. You have to gossip about other people. You have to be in group chats. You have to write blog posts and go to events that don’t pay so maybe you’ll get invited to do something that does pay later. All of this is specifically inaccessible to people who have energy-limiting chronic illnesses and whose neurodivergence makes navigating the nuances of unstructured social interaction physically painful.
When designers and academics branch out from their personal and professional networks to recruit, they typically do one of two things. Either they recruit via local community organizations or they go through big disability charities. The limitation of local community organizations is that, well, they’re local. Local to most universities and agencies and companies with in-house design and research teams means urban. And that means disabled people living in rural and suburban areas — who often end up living there specifically because they are too impoverished to afford to live in the city — are systematically excluded from disability engagement.
Meanwhile, large-scale disability charities seem appealing because they can afford SEO which means they’re easy to find, both for professionals and prospective participants, they have good name recognition and wide reach. But most disability charities have a very conservative way of thinking about disability. A lot of them place emphasis on improving diagnosis in specific ways that reinforce clinical power dynamics instead of challenging the ways we think about and do diagnosis, on finding new treatments without addressing how many existing treatments are just totally inaccessible to people or the power dynamics that lead to certain conditions being underresearched, underrecognized and undertreated, on fundraising to make very showy contributions to a very few disabled people rather than advocating for systematic changes that will support independent living.
And these are just the mediocre charities. There are also charities that block the people they purport to represent on social media when those people question their research agendas or the transparency of the financial records. There are the charities that collaborate with tech companies to conduct eugenicist research oriented to the “treatment” (that is, eradication) of a neurotype, and who provide directories for what is essentially conversion therapy for Autistic children. And if you look at the leadership of these charities they are always dominated by white nondisabled people from professional backgrounds. When they have “patient advisory boards”, those are almost uniformly white and economically privileged because those boards don’t pay. And impoverished, multiply-marginalized disabled people cannot afford to be giving their incredibly limited and energy away for free because they are already using all of it just to try and survive.
So the alternative model I propose to designers trying to find a better way to do things is this: hire a couple of disabled people as outreach coordinators. They should be disabled people who are politically engaged enough to be connected to small grassroots organizations, to be aware of current and ongoing issues within disability communities and how those need to be reflected in design research questions and recruitment profiles for research participants. And I don’t mean political in the sense of electoral politics but in the sense of understanding that disability is political and politicized and collective, not just neutral or individual.
Over time, have these outreach coordinators build a stable pool of similarly politically- and community-engaged disabled consultants who you can turn to on a recurring basis as new projects and new research questions come up. Those consultants will provide you with a critically-informed perspective that will be connected to trends and power dynamics and issues of concern within their communities. And their insights will be more useful than recruiting “users” for one-off engagements over and over, because they will be tailored to the specific organizational and design constraints you are dealing with, because over time these consultants will become familiar with your organizational culture and processes.
Disabled And Here is a disability-led stock image and interview series celebrating disabled Black, Indigenous, people of color (BIPOC).
