Whether or not you have a visible disability, it’s likely that at some point in your life you’ll have other people judge you, categorize you, and assume wrong things about you based on their perception of you. Nobody likes feeling reduced to the sum of someone else’s preconceptions.
As researchers, it’s our job to create a safe, respectful and supportive environment for all of our participants. This means cultivating “people first” attitudes and behaviors that recognize two basic facts:
People are people,
And disabilities are things people have.
This isn’t just the right thing to do, it’s also the best way to create an atmosphere where participants feel free to share the kind of direct, open, and unedited feedback that helps researchers succeed. Here are some tips and best practices that will help you create a “people first' research environment.
Do during facilitation
Mirror the participant's word choice on their disability. If unsure, default to people first language in the United States. Avoid phrases like “physically challenged,” “differently abled,” or “people with impairments.” For example:
“People with disabilities” instead of “handicapped people.”
“People with a physical disability” instead of “physically challenged.”
“People with cognitive disabilities” instead of “cognitively impaired.”
Respect the participant's privacy. Allow them to discuss their situation if and when they feel comfortable doing so.
Allow participants to take breaks whenever they need them or plan scheduled breaks in your study.
Don't during facilitation
Don’t focus on the participant's disability. Treat them like any other participant. For example, instead of asking “How does blindness affect how you complete this benefits form?” consider “How would you complete this benefits form?”
Don’t praise them for the heroism of their disability. Don't treat people with disabilities as objects of inspiration (Stella Young, TED).
Don’t make assumptions. People with disabilities are the best judge of what they can or cannot do. For example, if your product uses a camera, don’t assume that a Veteran who is blind wouldn’t want to or be able to use it.
Don’t use disempowering words like “victim” or “sufferer.”
Don’t interrupt the participant. Listen patiently and, if needed, ask for clarification
Don’t assume the participant needs help. Don't take action without asking. If you’re unsure of what to do, ask them if they need any assistance first.
Don’t time tasks (unless it’s for a specific advanced-user study). Assistive technology users may have large deviations in task completion time depending on their technology and experience.
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