Research collaboration.
'Nothing about us without us' has to make it past the consent form. It has to show up in study design, authorship, and budget.
Community advisory boards
For any study that involves nonspeaking participants, convene an advisory board of nonspeaking communicators before the protocol is finalized. Compensate the time. Use their input to shape research questions, methods, and what counts as a meaningful outcome.
Co-investigators and co-authors
Nonspeaking researchers can hold real roles in study design, analysis, and writing. Authorship norms should follow contribution, not communication modality.
Accessible study designs
- Allow written responses everywhere a verbal response is allowed.
- Permit communication partners and account for their role in your methods section.
- Build in processing time and breaks; treat fatigue as data, not noise.
- Plain-language consent materials, with the option to ask questions in writing.
Outcomes worth measuring
Quality of life, self-determination, communication access, and participation matter more than narrow speech-output metrics. See outcomes data and AAC, participation, and quality of life.