A new article, published in the Health and Human Rights Journal, analyzes important barriers to the implementation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and proposes ways to move away from the bio-medical model toward an epistemology and set of practices based on collective first-person knowledge.
The article is written by experts in survivor-controlled research and critical disability studies, Jasna Russo, from the Technical University Dortmund, Germany, and Stephanie Wooley, from the European Network of (Ex-)Users and Survivors of Psychiatry.
“The fact that our collective first-person knowledge has not yet amounted to our own model or theory but remains subject to expert interpretations makes us continue to seek better explanations of our own lives and leaves us without a self-articulated framework to understand and communicate our social realities beyond our individual stories,” Russo and Wooley write.
The inclusion of persons with psychosocial disabilities in the CRPD continues to spur debate and controversy.
While much progress has occurred in the campaign to uphold the rights of persons with physical disabilities, the mental health field continues to systematically employ coercion, violence, and involuntary interventions, violating the rights of persons experiencing emotional distress.
The legal capacity of persons experiencing extreme states or life crises continues to be questioned on the grounds of expert opinion and psychiatric diagnoses.
Russo and Wooley propose that the implementation of the CPRD demands a complete reframing of our understanding of madness and distress. They argue that a model of madness and mental distress that is congruent with the CRPD should have at its centre the first-hand knowledge derived from lived experience with mental health challenges.
One of the barriers to the full implementation of the CRPD is that expert knowledge continues to frame madness and distress in terms of “us” – which stands for professionals and experts – and “them,” which stands for the mad and distressed.
One of the consequences of such an understanding is a power asymmetry that cannot be corrected by merely including human rights language in the current debate, or slightly shifting practices to reduce flagrant rights violations.
The authors raise the following question:
“So the obvious question is how psychiatry can safeguard the human rights of its targeted subjects while its task remains precisely to control and preventively deprive them of exercising those rights.”
They suggest that this is not possible. Efforts coming from the psychiatric establishment will never be able to fully uphold the rights of the mad and distressed by virtue of the very framework that guides the understanding of these phenomena as well as the historical mandate of social control to which psychiatry still subscribes.
Examples of what that would look like in practice are abundant: reducing violence, rather than eliminating it, avoiding coercion, rather than abolishing it, upholding people’s rights, until they are deemed to lack insight.
Russo and Wooley write that there is an urgent need to develop a model and theory capable of articulating madness and distress from a first-person perspective. Without a self-articulated framework, those deemed “mad” will remain subject to the symbolic and material violence of experts.
Additionally, the authors warn against the co-opting of such attempts by the establishment. In line with what happened with the “recovery” movement, the human rights language has been quickly adopted by dominant players to effect reform without change. While persons with lived experience are invited to have a seat at the table, they don’t set the agenda and lack real decision power.
“This situation creates a chronically vacant space, leads to token representation, and makes it easy for other stakeholders to speak for us and often also to make our cause their own,” the authors write.
The understanding of physical disabilities shifted with the introduction of the social model of disability through political activism, research, and theory development. This new model promoted a shift from a medical understanding of disabilities to a broader focus on the societal conditions that generate disablement.
The authors point out that no such model was ever developed to replace the current biomedical model of psychiatry.
“The lack of such a model of madness has tangible implications and cannot go unnoticed. In our view, this absence is one of the main obstacles to realizing the provisions of the CRPD for our people.”
Russo and Wooley provide a clear way to move forward.
A new model of madness should be developed from the lived experience of those deemed mad and distressed. There is a pressing need to shift the locus of these experiences from the brain, the body, and the individual, to the social and living conditions from which madness and distress emerge.
“First-person knowledge cannot just be inserted as an additional or optional resource, as is now the case. The time has come for collective and diverse survivor knowledge to become a central resource, and this hour is long overdue.”
This paper outlines the importance of a significant shift in the understanding of life crises, madness, and distress. That shift, according to the authors, cannot be spearheaded by psychiatry itself, but rather by those with first-hand knowledge who are better positioned to set the terms of how supports should be organized and how extreme experiences should be understood and communicated.
Russo and Wooley argue that there is a need to go beyond individual stories and experiences, toward a conceptual and practical model analogous to the social model of physical disabilities, with a focus on how societal structures play a crucial role in creating disablement.
They suggest that we will not move forward in the full implementation of the CRPD while our understanding of madness and distress remains the same, and psychiatry continues to set the agenda.