20 Mar 2024 Frank Spillers


User Research Must Include People with Disabilities

User Research Must Include People with Disabilities

Summary: In this upcoming User Research Intensive (job skills training), we will work directly with neurodiverse users to understand how cognitive disabilities impact access to digital experiences. We will discover from neurodiverse users their experiences with Generative AI and what this means for AI Accessibility.

Also see: Accessibility by Design masterclass and a Designing for Neurodiversity workshop in the Inner Circle.

Embracing Neurodiversity: Why User Research Must Include People with Disabilities

In the disability community, the saying “nothing about us, without us” speaks to inclusion. Moreover, it means putting users with disabilities at the center of the access and improvement process. Studies show that neurodiversity affects up to 30% of people in the US and up to 20% in the UK. Neurodiversity includes learning disabilities like dyslexia, dyscalculia, and ADHD…as well as Dyspraxia, Tourette Syndrome, and Asperger’s, which is now considered on the Autism Spectrum (ASD).

Why this matters: Accessibility efforts are notorious for working behind closed doors and not talking to a single user with a disability. WCAG 3.0 promises to fix this, but details are still being worked out.

Elon Musk, who is on the ‘spectrum,’ (ASD), as well as other public figures, have amplified the need to respect and understand ‘invisible disabilities.’ Neurodiversity offers an opportunity to shake off your neurotypical biases as a designer. That means NOT adding too much design, information, steps, tiny fonts, difficult-to-interpret, difficult-to-understand, instruction-free, or confusing, and complicated messages and error states. That was a lot- but designers will appreciate the concrete examples.

Understanding the diverse needs of neurodiverse users is paramount. In this upcoming User Research Intensive, you’ll work directly with neurodiverse users to hear their stories. The best part: the fee will be used to pay the users. Now that’s disability justice!

Ignoring the perspectives of individuals with disabilities not only perpetuates exclusion but also results in products and services that fail to meet the specific needs of a significant portion of your user population. Exclusion, even ‘by accident’, can miss the opportunity for Inclusion Innovation.

Why do User Research with Neurodiverse users?

Accessibility is not just a technical task or something you do on code. This means upfront User Research, such as conducting ethnographic interviews for accessibility, is rare. Accessibility has made the mistake of being reactive (fixing broken code) rather than inclusive (designing for accessibility). So what else can we gain from doing User Research, especially with neurodiverse users who are often ‘invisible’?

1) Keeping it real: Including individuals with disabilities in user research ensures an accurate representation of their experiences, challenges, and preferences.  Their insights are invaluable in shaping solutions that are truly inclusive and accessible.

2) ‘Actionable empathy’ and understanding: Engaging with users who have diverse neurological perspectives fosters empathy and understanding among designers and developers. This empathy is essential for creating products that are not only functional but also genuinely considerate of users’ needs.

Now Tweet this: “Anyone who thinks empathy is not useful in design hasn’t spent much time with users with disabilities”. -Frank Spillers

3) Uncovering hidden opportunities: User research with neurodiverse individuals often unveils hidden opportunities for innovation. Their unique perspectives can inspire novel solutions and features that benefit all users, not just those with disabilities. An example? Closed captioning was a requirement of Deaf and Hard of Hearing users– now Netflix estimates it is default to “on” by 80% of users.

What else can we learn from neurodiverse users that might remove the access issue with AI prompt engineering?

4) Avoiding harmful assumptions: Designing without input from neurodiverse individuals can lead to harmful assumptions and stereotypes. User research challenges biases and ensures products respect and serve users with cognitive disabilities.

5) Legal and ethical issues: Beyond moral obligations, there are legal and ethical imperatives to include people with disabilities in user research. Accessibility regulations and guidelines require companies to offer access in software and services. It’s risky to do this without including users with disabilities.

Bottom line

Embracing users with disabilities in user research, specifically neurodiversity in user research, aligns with the principles of disability justice. By actively involving individuals with disabilities in the design process, we can create products and services that empower and serve everyone, leaving no one behind. Let’s commit to conducting user research with the mantra “nothing about us, without us” at the forefront of our minds.

Join the User Research Intensive (job skills training), working with neurodiverse users.

Also see: Accessibility by Design masterclass and a Designing for Neurodiversity workshop in the Inner Circle.

About the Author

headshot of frank spillers

Frank Spillers

Founder - UX Inner Circle

Frank Spillers, MS, founded the UX Inner Circle to share his knowledge and skills with his students from the Interaction Design Foundation where he has provided select trainings for the past 8 years. He leads UX and Service Design consulting at Experience Dynamics, an award-winning consultancy. He works with the world’s leading brands to deliver cutting-edge strategy for products, services, and experiences. Starting out in the mid-’90s in social VR, Frank has consulted on 600 UX projects including enterprise web applications, nonprofits, government and more. He’s an Inclusive Design evangelist, and expert in Accessibility, Emotion Design, VR/AR, Cross-cultural Design and UX Management. Frank brings 25 years of experience as a Sr. UX Director and Service Design leader. He has lifted conversion rates by 88% and enhanced revenue by 300% for firms like Nike, Intel, Microsoft, the City of New York, Global Disability Rights Now!, Four Seasons, Capital One, the World Bank, Women Enabled International, and many more.

Apply to start your membership at $99 or 50% Discount

for student/non-profit or Global South

Stay up to date with the UX Inner Circle, join our email list: