In a new chapter for the book “Recovering the US Mental Healthcare System,” Yale University School of Medicine’s Rebecca Miller and Anthony Pavlo explore the transformative potential of epistemic justice in moving mental healthcare systems past traditional medical models. The authors delve into the critical psychiatry movements of deinstitutionalization and deprescribing, advocating for a framework where service users’ voices are not just heard but are central to treatment and policy-making processes.
“Epistemic injustice refers to denoting some perspectives as less valuable than others based on some characteristic of the person holding this perspective, effectively silencing some voices,” Miller and Pavlo write. “Furthermore, epistemic injustices diminish one’s agency, as the act of creating and sharing knowledge is one aspect of power, and through the means of discrediting one’s stories, one’s power is compromised, and they become delegitimized.”
Using this concept, they examine social justice issues in the mental healthcare system and outline psychiatry’s history of “excluding certain voices and privileging others.” They conclude with future directions towards epistemic justice, which would respect people receiving services as experts on their own lived experiences.
In light of deinstitutionalization, medication, and the medical model significantly contribute to epistemic injustice. Although psychiatry claims to use a biopsychosocial model, Miller and Pavlo describe this as a “lopsided three-legged stool,” where biological explanations and the use of medication triumph over social considerations and other treatment options.
“Even in the face of unyielding and oppressive social conditions,” they write, “the ‘bio’ in the purported ‘biopsychosocial’ model seems to trump any environmental contributors such as trauma, historical oppression, systemic racism or other factors. The influence of pharmaceutical companies and reimbursement structures on the practice of psychiatry contributes to the medicalization of distress and potentially foreshortening the value of individual experiences by providers.”
Given the dominance of this framework, patients who do not adhere to the biomedical narrative have frequently been dismissed. Despite efforts to implement shared decision-making in mental healthcare, if service users question their diagnosis or choose to discontinue their medication, they are often delegitimized and labeled “non-compliant.” In this way, service user knowledge and insight into their own lived experience is disregarded and not taken seriously.
This is especially true for people who have experienced systems labeled as psychosis. In these cases, some have been further pathologized for “lacking insight” into their illness and diagnosed with “anosognosia, a neurological condition where one is unaware of one’s medical condition as a symptom of that condition.” This is also perpetuated by the stigma associated with “coming off” of psychotropic medications, which in public discourse has been associated with dangerousness rather than a sign of recovery.
A future that embodies epistemic justice would require a major shift in power dynamics and more adequate recognition that social conditions contribute to distress. It will require that providers share power in the diagnostic and treatment process and that patients are viewed as experts of their own lived experiences. These values align with a disability rights model, which uplifts recovery and views treatment as one option but also accepts variation in emotions, behavior, and the human experience.
In the realm of deinstitutionalization, epistemic justice underscores the importance of acknowledging the oppressive history of psychiatric institutions. It highlights the need to understand and integrate the experiences of those who were marginalized or oppressed within these systems, including groups affected by racism, sexism, homophobia, and transphobia. By embracing epistemic justice, the deinstitutionalization movement can more effectively address the rights and needs of diverse populations, ensuring that their experiences inform future mental health care policies and practices.
Regarding deprescribing, epistemic justice illuminates the power imbalances inherent in the traditional psychiatric medication regimen. It advocates for a more collaborative approach to medication management, where service users’ preferences, experiences, and insights are given equal weight to medical expertise. This approach empowers individuals in their treatment plans and acknowledges the complex social, cultural, and personal factors that influence mental health. Deprescribing, therefore, becomes a negotiation and shared decision-making process, rather than a unilateral medical directive.
The focus on epistemic justice in critical psychiatry could be a pivotal factor in promoting a movement towards de-diagnosis, as it challenges the traditional, often rigid, medical model of diagnosing mental illnesses. This approach is inherently at odds with a system that has historically relied heavily on a prescriptive diagnostic framework, often overlooking the subjective and social dimensions of mental health. There is an increased recognition of the limitations and potential harms of the prevailing diagnostic system, as exemplified by the DSM.
In the case of schizophrenia, a focus on epistemic justice highlights how the traditional narratives around these diagnoses can be disempowering and deterministic. For instance, the prevailing belief that recovery from schizophrenia is not possible contributes to a sense of hopelessness both for individuals diagnosed with the condition and for their caregivers. By contrast, epistemic justice encourages a more nuanced understanding of these conditions, acknowledging the potential for recovery and the importance of considering each individual’s unique experience and perspective.
Epistemic justice would also center on peer support roles that are actually service user-led. As Miller and Pavlo point out, the use of peer support has been a progressive first step, yet peer specialists are often pressured to support pre-established norms in the psychiatric system. They explain that:
“Despite recent efforts that are valuable, such as the increasing prevalence of advisory boards of people with lived experience in federally funded grants, these efforts need to be considered absolutely essential and as equally valued voices and sources of knowledge, as opposed to add-ons or afterthoughts, by incorporating them as foundational aspects of gathering knowledge.”
Lastly, they advocate for a system that addresses structural inequities. This would acknowledge that psychiatry and the diagnostic process have historically been used to oppress Black and other marginalized groups. It would allow for conversation regarding the difference between “psychiatric symptoms as an illness versus a response to social conditions” and allow for a bidirectional and shared treatment process that uplifts service user knowledge and voices in the process.
The chapter highlights the pervasive issue of epistemic injustice, not just at the individual and clinical levels but also within organizational and policy frameworks. It also discusses the role of social media in democratizing the conversation around mental health, providing a platform for equal exchanges between psychiatrists and psychiatric survivors, albeit with challenges such as online harassment and unequal access to mainstream publication venues.
This article aligns with other work that suggests that achieving epistemic justice should also include reforming the medical school curriculum. Centering epistemic justice and leveling out the power differential between providers and service users is of utmost importance, especially given recent concerns on how the use of digital detection and diagnosis may perpetuate the dismissal of social context and service user knowledge.
Miller, R., & Pavlo, A. (2022). From deinstitutionalization to deprescribing and beyond. In M. Stacy & C. A. Davidson (Eds.), Recovering the US Mental Healthcare System: The Past, Present, and Future of Psychosocial Interventions for Psychosis (pp. 183-205). Cambridge University Press. https://doi.org/10.1017/9781108951760.011 (Link)