A Glossary for Reimagining Mental Health Ethics, From ‘Tokenism’ to ‘Justice’

“Nothing about us without us” has long been the rallying cry of disability justice advocates, and it’s increasingly being invoked by service users and psychiatric survivors to challenge the exclusionary norms of mental health care and research. In a chapter published in Ethics in Psychiatry: European Contributions, eight authors—among them survivors, clinicians, and researchers—lay out a bold, alphabetized vision for transforming the field.

Led by Elena Demke, the team offers “A-Z of Ethics of User Involvement in Mental Health Care and Research”—a sweeping call for change that spotlights the systemic erasure of people with lived experience from the very systems and studies meant to serve them.

“Today, in the light of a more inclusive understanding of human rights… no policy development, no amendment of legislation or elaboration of new regulations should be undertaken without including experts in their own rights: persons with a lived experience of the issues at stake. However, for persons with a lived experience of mental health problems and services, this has not yet become the day-to-day reality, especially, when bearing in mind that tokenistic forms of participation are hardly anything else than another version of ‘without us.’”

The text highlights how exclusion manifests in clinical and academic environments, both subtly and overtly, through ideological and structural means. The authors discuss various issues such as tokenism, epistemic injustice, language barriers, and the misapplication of diagnoses. They illustrate that user involvement often tends to be merely symbolic at best and, in some cases, even detrimental.