Centering Perspectives from People with Disabilities
“Inclusion” is a broad category, as we discuss in the introduction to this guide. We’ve decided to begin by focusing on an area in which we share collective knowledge from professional and personal experience: involving people with disabilities in experience research. In this article, we provide insights from disability communities that we hope will inform your research. We discuss some concepts that have emerged from disability communities, including “crip time,” “crip solidarity,” and accommodations as a tool for equity.
In the following articles, we talk about:
- Getting stakeholder buy-in for research involving people with disabilities
- Working with disability communities to conduct research
- Prepping for research with people with disabilities
- Running research with people with disabilities
- Analyzing and sharing research with people with disabilities
Including people with disabilities is only the first step toward inclusive research. In the future, we hope to add additional documents involving other underinvested communities to this guide on inclusive research.
Why Should Your Research Methods Be Informed by Disability Theory?
During the American disability rights movement, activists with disabilities popularized the slogan “Nothing about us without us!” The slogan demands that people with disabilities have an active role in designing interventions that target them. We believe this is of the utmost importance, since people with disabilities possess the most knowledge about living with disabilities, as well as the “hacks,” in Liz Jackson’s words, that help them navigate barriers. One way to ensure that people with disabilities have a role in the products we create is to guarantee their participation in the research we conduct.
We also want to highlight the distinction we see between accessibility testing and the inclusive experience research that we advocate for in this guide. Accessibility testing helps ensure that products and experiences are compliant—perceivable, operable, understandable, and robust—usually to the standards of the Web Content Authoring Guidelines (WCAG). We contrast this with inclusive experience research, which enables diverse perspectives to shape the concept and creation of technology and other experiences. This approach goes beyond simply ensuring compliance. We encourage you to use this resource not to enable diverse user participation that merely upholds the status quo (see Sara Ahmed, On Being Included), but rather, to build technology that contributes to a more democratic and equitable world.
Accommodating “Crip Time”
The word “crip” is used by activists and members of the disability community who have a political and theoretical stance toward disability as something valuable to the world. (For starters, see Robert McRuer on crip theory.) Activists have intentionally reappropriated this historically negative word in order to form positive associations. (A similar linguistic shift has been advocated with the term “queer.”) We introduce “crip” in this section to orient you to the rich lifeworlds of people with disabilities.
“Crip time” is a term—mentioned by many, including Allison Kafer and Ellen Samuels—that refers to the ways in which people with disabilities experience time, as opposed to “standard time,” experienced by those without disabilities. For instance, a person who relies on the assistance of a caretaker might experience time according to the availability and schedule of that caretaker. Or, a person who has unpredictable fatigue that requires them to rest might orient their time around those needs. These schedules may not fit seamlessly within “standard time”—especially not the fast-paced product cycles that many of us know so well.
We are not suggesting that you use the term “crip” to refer to people with disabilities, since this is a term with unique meaning to the disability rights community. Instead, we are suggesting that you adopt the flexible timelines “crip time” teaches us. This means:
- You might need to be flexible with your scheduling. People with disabilities might experience issues that make them late or unavailable for appointments they have previously booked with you.
- You may need to schedule longer sessions than expected. This accommodates people who need to work through barriers with assistive technology.
- You might need to rethink your overall timeline. It could take longer to connect with and recruit people with disabilities for your studies.
Let People with Disabilities Guide Your Language Choices
Disability communities have a rich history of language usage that reflects the way in which these communities have deconstructed stigma around disabilities. (For example, see Molly’s article on language usage by wheelchair basketball players.) You will need to make decisions about how you refer to different disabilities, and you should also bear in mind that language is fluid: people with disabilities might use different terms for the same concepts or conditions. When you can, ask people how they would like you to refer to their disabilities.
For instance, during a research interview, you might ask, “Do you identify as a person with a disability?”
If your research participant answers, “yes,” you might follow with, “Can you tell me how you would like me to refer to that?”
When you can’t ask someone how they would like you to refer to their disabilities, you will have to make a decision based on standards of local disability communities and your own critical perspective. For instance, we have chosen person-first language for this guide, even though one of us (Molly) uses identity-first language to refer to herself. We made this decision because person-first language is widely accepted by people in disability communities in the United States.
As an example of approaching disability-related language in the design process, Adobe’s design pattern, Spectrum, offers the following guidance:
Person-first language centers the person, not their qualities, by using those qualities as modifiers: “Design products for people with disabilities.” But for identity-first language, which some communities and individuals prefer instead, language highlights the disability: “Design products for disabled people.” No group unilaterally chooses one over the other. Avoid euphemisms, like “differently-abled,” and descriptors used as nouns, like “the disabled” or “the blind.”
Access as Love
Accommodations are modifications that enable people to participate in experiences that would otherwise be inaccessible to them. Types of accommodation depend on context, such as activity (e.g., work, recreation, research), setting (e.g., virtual meeting, physical space), and local laws (e.g., the Americans with Disabilities Act, the Canadian Human Rights Act, etc.).
We will talk about accommodations more specifically in the sections on preparing for research and running a study. For now, we want you to think about how approaching your work from the mindset of accommodation will enable collaborative experiences that reduce exclusion.
Accommodations are necessary for people who live in a world that was not built for them and who cannot participate in that world in the same way that those without disabilities can. Take a note from disability activists like Leah Lakshmi Piepzna-Samarasinha, who argues that prioritizing access is a radical shift in power and that creating access is an act of love:
“When I think about access, I think about love. I think that crip solidarity, and solidarity between crips and non(yet)-crips is a powerful act of love and I-got-your-back. It’s in big things, but it’s also in the little things we do moment by moment to ensure that we all — in our individual bodies — get to be present fiercely as we make change.”
In this guide, we share practical tips for providing access, centering disabled perspectives, and prioritizing inclusivity before, during, and after your research sessions. We invite you to accommodate, uplift, and engage people with disabilities at each step in your research process.
Ready for more?
Learn how to get support and resources for you research with Stakeholder Buy-in for Research with People with Disabilities.
