Mission of the Century
Caya Chiu, PhD, FAAIDD, National Taiwan Normal University
As the field of research in intellectual and developmental disability (IDD) progresses, more and more researchers have begun recognizing the value of engaging people with IDD in inclusive research. It may indeed be our responsibility as researchers to do, to deliberately and strenuously ensure that research reflects the true meaning of ‘Nothing about us without us.’
It is unignorable that there have been research studies in the past that harmed people with IDD (e.g., the human radiation experiments). In response to these abuses, ethical guidelines were established as safeguards to ensure that studies do not involve unacceptable risks for participants, especially for vulnerable populations, such as people with IDD. Unfortunately, researchers may be discouraged from recruiting participants with IDD by the additional time and effort it takes to obtain approval from institutional review boards. However, the lack of active participation of individuals with IDD in research could very well be viewed as failing to acknowledge their right to inclusion.
For this reason, in recent years more researchers have urged the field to design and conduct inclusive research. Achieving this goal may involve transforming perspectives toward people with IDD as an empowered population, developing plain language research materials for all participants, improving strategies for inclusive research designs that could benefit all stakeholders, and training researchers to implement those strategies to ensure that benefits outweigh any risks. It may be difficult, but it is our responsibility to push for research to be more relevant to the IDD community.
Because, after all, we did not choose to go to the moon because it was easy.