by Jo Ristow, SLP (speech-language pathologist); NWACS Board Member
reading time: 3 minutes
This is a plain-language summary of a journal article. The article is one of 21 articles in a special issue of the AAC journal (Volume 41, Issue 3, 2025). All the articles are written or co-written by AAC users. The articles are free to read. Plain-language summaries of research are important for accessibility. Providing summaries in plain language helps make complex information easier to read. This helps to better understand and put the research into practice.
Summary of: Nothing about AAC users without AAC users: a call for meaningful inclusion in research, technology development, and professional training by Blasko, et al. (2025)
“Nothing about us without us”
“Nothing about us without us” is a phrase used by disabled people to highlight that all ideas, decisions, and support for disabled people should be informed by those with lived experience. It means that no decisions about disabled people should be made unless it includes the meaningful input of the people it most affects. In this case, it means AAC users know best what AAC users need.
This is not the way AAC research is currently being done. Right now, it is mostly non-disabled, speaking researchers that make decisions about what to study and how to study it. The authors are saying that people who use AAC must be included in all stages of research. They need to be included in:
Choosing what questions to study,
Choosing how to study it (designing the study)
Choosing what to measure and how to analyze the data
Sharing the results of the study.
Include AAC Users Meaningfully
AAC users need to be included meaningfully. It is not enough to have only one AAC user just for show (tokenism). Multiple AAC users must be listened to. They must have the opportunity to provide feedback. We must also work to reduce discrimination towards AAC users because of their:
disability (ableism)
communication mode (speechism)
race (racism)
access to the educational settings where researchers are
We need to break down barriers that make it difficult for AAC users to participate in research. We can do so by providing accommodations like
extra time
plain language
multiple communication options
We can do so by valuing their expertise in much the same way we value academic expertise.
Research has a direct impact on what kinds of support AAC users receive. Therefore, AAC users should be primary contributors to research. They have real-life insights into what is helpful or not. They can help researchers find solutions that are most likely to meet the daily needs of real AAC users. It promotes equity, respect, and better supports and solutions for AAC users.
Move to Make Changes
So, what can we do now to make the change?
In research and technology development
Use co-design methods where AAC users and technology developers or researchers create together.
Involve a wide variety of AAC users (different ages, abilities, cultural backgrounds).
Pay AAC users for their time and knowledge, just as you would pay consultants.
In professional training:
Invite AAC users to teach and train future professionals (e.g., speech-language pathologists, teachers).
Share lived experiences to help professionals understand what real communication barriers feel like.
Partner with AAC users to create course materials, workshops, or presentations.
In professional practice:
Build authentic relationships with AAC users in your community.
Create partnerships with AAC users, not hierarchies.
Commit to ongoing curiosity and learning to improve inclusion.
Remember: “Nothing about us without us.”
Citation:
Blasko, G., Light, J., McNaughton, D., Williams, B., & Zimmerman, J. (2025). Nothing about AAC users without AAC users: a call for meaningful inclusion in research, technology development, and professional training. Augmentative and Alternative Communication, 41(3), 184–194.
Access full article: https://doi.org/10.1080/07434618.2025.2514748
