All aspects of research must have meaningful involvement of persons with IDD-MH and their families
“By ‘participation’, we mean taking part at any or all parts of the research process – from being a research participant in the orthodox sense to being actively involved in the design, implementation, interpretation and dissemination of the research itself.”1
1 Pellicano, L., Mandy, W., Bölte, S., Stahmer, A., Lounds Taylor, J., & Mandell, D. S. (2018). A new era for autism research, and for our journal. Autism, 22(2), 82-83.
Nothing about us without us
For many years, the mantra of the disability movement has been “nothing about us without us.” This is not just a motto or an advocacy term - it is a profound assertion of self-determination to be honored, including when doing research.
Engagement in research means being actively involved in the design implementation, analysis, and dissemination of a study. The engagement of young adults with the lived experience of IDD-MH in research helps to make harms less likely.
In this video, a member of our leadership team, Micah Peace, explains why it’s important to engage people with IDD-MH in research.
"We, as researchers, might forget that not everybody knows about or intrinsically value research. So it's important for us to go to communities, especially those who have been harmed by research and provide some education about the potential for research and work together to figure out what may or may not work out and what research may or may not be able to offer.”
- Researcher, Transforming Research Forum
Accessibility & Universal Design
The use of universal design helps make sure that everyone can be part of research. The principles of universal design include:
Providing information in multiple formats, such as plain language, pictures, graphics, American Sign Language, and in languages other than English.
Facilitating communication and sharing in a way that works best for all, such as writing or speaking, sharing in large groups, or talking one- on- one.
Inviting people to complete research tasks that they feel are important and related to their everyday lives.
To learn more about Universal Design, visit: https://udlguidelines.cast.org/
In this video, members of our leadership team, Destiny Watkins and Jessica Kramer, describe the strategies our team used to provide access during research team meetings.