Learning How to Learn Together: Integrating Lived Experience Into Mental Health Care

The surge in involvement of consumers, survivors, and stakeholders in mental health care can be traced back to activist user movements that thrived from the 1960s, guided by the principle “Nothing about us without us” (2). Originating as a grassroots movement, the survivor movement in mental health sought to challenge power structures to address stigmatization and oppression faced by those labeled as mentally ill within a health care system backed by carceral state power.

Decades later, the feminist philosopher Miranda Fricker (3) introduced the term “epistemic injustice,” defined as the devaluation of the capacity of individuals from stigmatized subgroups as holders of knowledge. Knowledge from such individuals is deemed less legitimate because of negative prejudices against the person articulating such knowledge. Confronting epistemic injustice involves acknowledging and challenging biases and power imbalances that shape the evaluation of sources of knowledge and acquiring the ability to recognize different ways of knowing and what they can contribute to inquiry.

Another rationale is based on a neoliberal strategy that believes health care will be more effective if patients are positioned as customers. Asking service users to pinpoint potential improvements can be useful, just as we are asked about our “experience” when we have visited a public toilet or a Swedish furniture mall. This rationale seeks to improve services without challenging existing power dynamics or any commitment to expand and evaluate ideas.

Familiarity with lived experiences of psychosis can aid efforts to understand and treat psychosis in its entire diversity but not always in the same way. When generalizing about a population, clinicians must ensure that the experiential basis of the generalization is representative. But when working one-on-one with someone with psychosis, it is essential to focus on subjectivity, how a person experiences their challenges, where they are headed, and what hinders or helps their journey. Therefore, the epistemic importance of lived experience is likely to vary when the goals of treatment and inquiry vary, requiring clinicians and providers to learn about these experiences to clarify their own goals. If the rationale for inclusion of the voices of individuals with lived experience of mental illness is rooted in neoliberal aspirations to enhance service provision, engaging in silent listening as a response to testimonies about services poses no significant issue. However, if the objective is to challenge epistemic comprehension of mental distress, clinicians and other providers must ask the following questions: Are we aiming to accurately represent X (i.e., a specific condition) or effectively manage X? Do we seek to understand “what it is like to experience X” or “what causes X”? Do we intend to treat individual instances of X or treat X as a phenomenon encountered by entire populations?

Being precise about these epistemic goals can improve the quality of a conceptual understanding of the types of knowledge lived experience represents and thereby professionalize clinicians’ responses. Some individuals, representing the professional medical perspective, may object that because appeals to lived experience involve subjective narratives that describe single cases, such appeals are inherently suspect. Standpoint theory, championed by Black and White feminists in the 1970s, has roots in Marxist analyses (4) and may help address this problem. Marx posited that proletarians possess insights into bourgeois modes of production beyond the sense of what it is like to be working class. In his view, proletarians not only are familiar with the feeling of alienation when engaged in wage labor but also comprehend that alienation is the effect of class struggle. However, as with feminist consciousness-raising efforts, proletarians did not arrive at this knowledge as isolated individuals; rather, they gained it through the collective sharing and comparison of experiences in a manner similar to but also distinct from typical inquiries. Idiosyncratic experiences that do not reflect the broader group experience are filtered through discussion, but they are neither ignored nor completely invalidated.

We think that the standpoint theory model is worth replicating. Lived experiences can be articulated without treating any one experience as self-evidently true or false. Instead, each can be considered a hypothesis or partial hypothesis and synthesized into broader generalizations, which can then be juxtaposed with those derived from controlled and replicable empirical research. This approach would require that communities of similarly situated individuals gather for the purposes of sharing experiences and formulate generalizations on the basis of these experiences. Such generalizations could then be shared as hypotheses (or sets of competing hypotheses should disagreements persist) that address research questions pertinent to that group’s needs. Once some consensus is reached, these perspectives can be introduced into discussions among health care professionals, prompting inquiry into previously overlooked phenomena.

Listening to individual narratives of service users can provide mental health professionals with insights into the subjective experience of other stakeholders, which is invaluable in clinical contexts. It is important, however, to keep in mind what the epistemic goal of an inquiry is. If its aim is to fundamentally reconsider the underpinnings of mental health care and challenge prevailing assumptions, it is imperative to foster communities where individuals facing similar challenges can exchange, deliberate on, and collectively construct knowledge that can be brought into dialogue with other forms of inquiry. Paradoxically, the uncritical deference often accorded to those with lived experiences can inadvertently create a barrier to truly integrating lived experiences into the discourse. Olúfémi O. Táíwò (5) says, “this kind of epistemic deference, while well-intentioned, is often harmful.” Deference is not a fruitful way to include this type of knowledge; rather, clinicians and other health care professionals must find ways to reach “connection and transformation.” An essential next step is to prioritize investment in these communities as communities of inquiry, rather than haphazardly including individuals in research groups where they lack genuine agency.