After careful consideration and lengthy planning, it’s time to pack up the car and hit the road! Illustration by Emma Siegel.

Running Research with People with Disabilities

Once you’ve completed all the preparation—it’s time to run the study. From the technology used to conduct a study to how you communicate with a participant, there are several considerations to be made during a research session to ensure that participants with disabilities feel comfortable. Below, we highlight some things to consider when running a remote session, including accommodations that might be relevant.

Disability Etiquette: Treating Participants with Disabilities Respectfully

As with the other aspects of research, as you continue to engage with people with disabilities, you will learn what works best. This is not an exhaustive list of proper etiquette, but we hope that it will get you started.

Road signs are a shared language for what’s allowed on the road, and they help to keep everyone safe. Establishing mutually agreed-upon rules and language with participants can ensure safety in research settings. Illustration by Emma Siegel.

• Language is complicated. As we discussed in Centering Perspectives from People with Disabilities, it’s best to ask people how they would like you to refer to their disability(ies).
• If possible, send tasks to participants ahead of time. Based on the type of study you wish to conduct, consider giving participants extra time to look over study tasks. Send your study tasks remotely via email, chat, or verbally. Make sure to compensate them for the extra time spent.
• Don’t push users to share information that they’re not comfortable sharing. It’s up to a participant to disclose what they wish to share in terms of their disability(ies) in a research session.
• Offer help during the session. Offer help and support, but only act once you have the participant’s consent. You can ask someone if they need help, but respect their answer if they say no. Try to establish a relationship in which the person feels like they can signal to you if they need some type of accommodation that is not already being offered.
• Ask participants if they need breaks during the sessions, and pause where necessary for the interpreter. We recommend adding in breaks for sessions over 30 minutes. If running a session with a sign language interpreter present, make sure that the interpreter has time to interpret what you’ve said — don’t speak too quickly, without pausing.
• If a sign language interpreter is present, address the research participant, not the interpreter or revoicer. No one likes to be talked about as if they are not present. Even if someone is Deaf, they might pick up important communication cues from your gestures and expressions.
• If you don’t understand someone, tell them. You might work with someone whose style of speech you are unaccustomed to hearing — e.g., someone with an accent or an impairment that affects their speech. If you can’t understand, politely ask the participant to repeat themselves.
• Be flexible. Working with people with disabilities may require flexibility. For instance, studies might take longer, and participants might need to cancel or reschedule.
• Mistakes will be made. Working with people with disabilities might be new for you. If you make a mistake, use it as a learning opportunity to do better in the future. It’s important that you acknowledge and understand the mistake, apologize, and try not to make the same one in the future. Don’t let mistakes deter you from completing future inclusive research!

Running Remote Research with Video Conferencing

As the world grapples with COVID-19, many of us have moved to completely remote research.

Virtual research offers some advantages for engaging participants with disabilities, such as:

• Participants do not need to worry about transportation.
• Participants can work from the comfort of their homes, where assistive technology may already be set up to accommodate their needs.

Special Considerations

At the same time, running virtual research with people with disabilities still requires special considerations. Here are some things to remember:

• ASL interpreters: If you are working with a sign language interpreter, make sure the participant who requested an interpreter can see the interpreter at all times (you may need to “pin” their video).
• Screen readers: If you are working with someone who is blind or low vision and uses a screen reader, the technology may have certain limitations. For instance, the participant will likely not be able to use the ‘remote control’ feature of video conferencing platforms because that feature tends not to be accessible. If you would like to hear what their screen reader is announcing, you might ask them to slow down their speech rate. (People familiar with screen readers tend to have the rate too fast for those unfamiliar with the technology to understand what is being said.) You might also need them to change their video conference settings so that their screen reader announcements are audible to all people on the call. You can also ask the person using the screen reader to turn on the captions panel, which will show what the screen reader is saying (though this only works for NVDA and VoiceOver).
• Captions: If you are working with someone who would like captions, many video conferencing platforms, like Zoom, support real time, auto-generated captioning. The AI powered captioning is improving, but tends to work best for transcribing standard accents, such as standard American English. You can also book a live captioner for more accurate transcription.

For an overview of methodologies and tips about ensuring accessibility during a virtual study, see Preparing for Research with People with Disabilities.

Thank you gift

Research participants provide value to your company by sharing their insights, experiences, and expertise. They should always be compensated fairly and equitably for their time. This is especially important for people with disabilities, who are more likely than non-disabled people to be unemployed or to experience poverty. Additionally, it is not uncommon for people with disabilities to be asked to provide their expertise for research without receiving any direct benefits. We encourage you to heed the calls from many in the disability community and show that you understand just how valuable participants’ insights into their own lived experiences are to your research. Some ways to thank participants for their time include:

• Monetary gifts, such as payment or gift cards.
• Physical gifts like swag.
• Donations.

Generally, monetary thank you gifts are preferred. People with disabilities may prefer gift card compensation instead of direct payment in case they rely on federal assistance programs (like SSDI or SSI in the US) that impose income limits.

All participants should be made aware of the tax implications of receiving a thank you gift for participating in research. We suggest including relevant language in consent forms and emails, such as: “We appreciate the time you will spend with us and will send you a ‘thank you’ gift after the research study is complete. You are responsible for complying with any applicable tax laws and filing requirements associated with any monetary ‘thank you’ gift you accept in connection with your participation in this study.”

It’s also important to provide adequate compensation for personal care assistants, interpreters, and any other folks providing accommodation or assistance for participants in the study.

Ready for more?

The sessions are complete. The participants have been compensated. Now it’s time to synthesize all the information into rich and impactful insights.