Doing research with disabled people

October 22, 2024

I do user research to learn about people’s needs, motivations and pain points. User research is an essential part of the design process.

Not only does it define what, why and how to build a product or service, user research also plays a key role in defining who we’re building for. And as Cyd Harrell says:

When we do user research, we make intentional decisions about who to involve in research. Whether it be designing a survey in a particular language, sharing a call for participation with a certain group of people, or defining recruitment criteria for specific demographics.

Many government websites aren’t accessible

In 2021, the American Community Survey (ACS) found there are 42.5 million Americans with disabilities, which is nearly 13% of the population [2]. There’s a federal law, Section 508, requiring agencies to provide people with disabilities equal access to digital information [3].

And yet, it’s all too common for government websites to not meet accessibility standards. In a 2021 report, ITIF found that 48% of popular federal websites fail to meet WCAG 2.0 Level AA guidelines on at least 1 of their 3 most visited pages [4]. Not to mention, WCAG guidelines are really just a starting point for building websites that are accessible.

The impact of a website not being accessible is that someone can’t read important information or complete a necessary task. Maybe, it’s still possible, but it requires unduly effort or the help of someone else [5].

Disabled people need to be included

This happens because disabled people aren’t involved. As Sasha Costanza-Chock says in Design Justice, “designers tend to unconsciously default to imagined users whose experiences are similar to their own” [6]. Hiring people with disabilities provides invaluable awareness and insight that improves the design of accessible products and services.

In addition to hiring, doing research with disabled people generates insights about the specific needs people with disabilities face, as well as, how well the product works with various assistive technologies.

Hiring disabled people and including them in research is necessary in order to design and build accessible government services.

Disability is a spectrum

When we invite disabled people to research, it’s critical to keep in mind that disability is a spectrum, and there are many different types of disabilities, whether they be cognitive, functional, or a combination [7]. Even people with the same disability can experience their disability and access services differently.

A commonly shared experience, though, is that disabled people often receive poor care or treatment which affects their trust and expectations [8]. And their perspective is too often, not included.

It’s critical to include a diverse range of perspectives within disabled communities.

Research with disabled people

By involving disabled people in research that is trauma-informed, we take a significant step towards designing products and services that work for and serve everyone.

When I do user research for the U.S. Department of Veterans Affairs, we recruit disabled people to participate. Recently, we ran a study where we learned from people who use screen readers, like, JAWS and VoiceOver, alternative navigation tools, like, Dragon and Voice Control, and screen magnification tools, like ZoomText.

Our insights uncovered things we would not have learned if we hadn’t tested with people who have expertise in their assistive technology and firsthand experience of navigating websites with their disabilities. And crucially, this research highlighted issues that not only improve the user experience for disabled people, but for everyone.

The more research we do with disabled people, the closer we get to building products that serve everyone.

References

[1] In A Civic Technologist’s Practice Guide, Cyd Harrell describes the types of projects, partnerships and people civic technologists encounter and methods for change.

[2] The American Community Survey (ACS) is an ongoing, yearly survey about the United States population.

[3] Under Section 508 of the Rehabilitation Act, federal agencies must give disabled people access to electronic information that’s comparable to the access available to others.

[4] The Information Technology & Innovation Foundation wrote this report about improving the accessibility of federal government websites in 2021.

[5] Robert Kingett wrote this blog about his experience combating ‘access trauma,’ or, trauma experienced by compounding and frequent experiences with inaccessibility.

[6] In Design Justice, Sasha Costanza-Chock explores structural inequalities, power dynamics and social justice in design.

[7] Zina Jawadi wrote this blog about disability as a spectrum for The Association of American Medical Colleges.

[8] The Supporting Justice project provides practical resources to support people in the criminal justice system.