Agnes Martin, "Summer 1964"
In a recent article for Philosophy, Psychiatry, & Psychology, Abdi Sanati argues that, while peers with lived experience of mental illness can make a big difference in the world, their expertise - signalled by the term "lived experience" - does not count as an adequate form of knowledge as knowledge. "Personal experience of mental illness on its own," Sanati writes, "cannot be the basis for expertise." In this blog post, I want to try and show why Sanati's argument is looking at the issue through the wrong end of the telescope, and that it is an emphasis on ontology, rather than epistemology (expertise being a form of epistemic authority) that can provide insights into what it is that makes the peer movement special, remarkable, and efficacious. I want to argue that it is the ontological alterity of the patient that makes them, not experts - I don't like the paternalistically epistemic ring of that term, and the way in which it lacks all otherness, as if the abiding dream of all patients were to acquire the epistemic authority of their mommy and daddy doctors - but rather thrown already into the position of peers. It is as peers that we can make a difference, regardless of whether our alterity is considered expertise or not. But in focusing exclusively on expertise - in this case, on the lack thereof of patients - Sanati loses a kind of picture of the patient as human being, and the article devolves into academese that does not place the patient front and center as a locus of care and understanding.
I think Sanati's argument is wrong-headed because he assumes tacitly that expertise is something desirable by those with lived experience of mental illness, as if in formalizing the bewilderment of delusion into a codified body of knowledge, we might domesticate the most broken aspects of ourselves. When we read, "The personal experience can contribute to forms of knowledge (providing insights; enhancing empathy; enabling communication) without constituting knowledge in itself," there is an air of lack. Yet it is this very emphasis on expertise in the light of lived experience that is the problem, since lived experience is not a theoretical construct and should not be the target of one. Lived experience is pre-reflective, and it is able to make a difference in people's lives because it is pre-reflective. What makes lived experience powerful is its everydayness, and not its desire to form a body of expertise. Therefore I agree with Sanati that lived experience does not involve a form of expertise, but I do not thing such a thing is desirable.
Sanati argues that lived experience of mental illness does not count as an actual body of expertise or knowledge, and this then leads to the question, what counts as a body of expertise? But it is here that Sanati starts asking the wrong kind of questions, and starts obscuring the human face of mental illness. I believe the article is wrong in terms of the overarching framework or perspective needed to appreciate how and why the peer movement makes a difference. The peer movement makes a difference, not because it holds a certain form of epistemic authority or knowledge, or aspires to such a form of knowledge, but because it is fundamentally an ontological movement, and this is what makes it radical. It places care at the forefront of its aims before knowledge, and therefore being before knowledge. This is what makes it special and efficacious. And this is what allows us to see each other's faces.
What is the use of lived experience? This is a question that plagued me when, in my late twenties, I was hospitalized for the first time for psychosis. I left the hospital without a diagnosis - later it would be termed schizoaffective bipolar type, a diagnosis I have embraced because of its explanatory power - and ultimately found a job with a peer-run organization that placed peers in drop-in centers, crisis residential units, and psychiatric screening centers. I found work at the screening center, and later at the drop-in center, using the fact of my lived experience to broach topics that might otherwise have gone unspoken. I liked working at the screening center, but I liked the drop-in center even more, because you could form longer-lasting relationships with people. But what I learned was that these relationships ripened over time because they happened with the context of the everyday. One patient, Mary Anne, would come up to my desk and tell me stories about her family. Another patient, Jim, shared poems with me. There were many many occasions of these types of interactions, and the values of such experiences increased over time as we spent time together.
Never, during my time working as a peer, did I think that my lived experience could or should ever be viewed as something related to expertise. I think I would have scoffed at the very idea. Although I didn't have the words for it yet, I would have scoffed because intuitively I would have recognized that lived experience of mental illness is not an epistemological category, but an ontological pre-reflective form of life, a form of existence, not a codifiable theoretical something or other. When Mary Anne came up to my desk and made me laugh, when Jim told me about how much he missed his step-dad, no one was posing as an expert and, had this happened, the everydayness of the encounter would have suffered, receded, become something neither of us would have wanted. Expertise is not an evil in itself - like I said, I derive much from my own diagnosis, which was developed by a form of nosological expertise. But people don't look to peers for a form of expertise, and the assumption that they do is, again, wrong-headed. The best forms of empathy, the apophatic kind, to use a term from Richard G. T. Gipps's On Madness: Understanding the Psychotic Mind, allow for a kind of preservation of the strangeness of illness, to see therefore actual brokenness and derangement honestly, but these forms of empathy wither under the scrutiny of epistemological expertise. We need to remember that theory shows us what the theory pressuposes. If our theory is that the peer movement aspires to a codified body of knowledge based on lived experience, we are going to see people in a way that isn't helpful, and these people are going to shrink back from our help. If you begin with lack, you're just going to see lack.
What is it that makes the peer movement powerful, special, efficacious? I believe it is what Louis Sass calls, alluding to Heidegger, the "ontological difference." Being, and not knowledge. Sass writes, in Heidegger, schizophrenia and the ontological difference, speaking of the difference between the ontic and ontological,
Although paranoid delusions are common in all types of psychosis, certain types of such delusions seem to be especially characteristic of schizophrenia; these are not primarily concerned with the content of reality - with, say, fear of a burglar who is imagined to be lurking somewhere in real space, spying and waiting to attack. Instead of issues existing within the world, the delusions in question primarily involve the overall ontological status of the world itself, which seems to the patient to be somehow unreal, dependent for its existence on being an object of knowledge for some consciousness or representational device that records or represents events.
Sass continues a little later on,
The full signifiance of this kind of epistemological delusion will, I think, be missed if, as so often occurs, the patient's claims are interpreted as essentially analogous, except for the fact of their erroneousness, to everyday statements about objects in the real world - as if, for instance, the first patient quoted just above were imagining that a real videocamera trained on him existed somewhere in actual space, or even in the same space that contains the unreal objects being filmed....I am suggesting that phenomena like the videocamera do not even exist in the same subjectivized domain as do other delusional objects. I would argue, in fact, that such delusional phenomena function as something like symbols for subjectivity itself, for the self-as-subject, and thus that they are not objects within the world, whether real or delusional, so much as expressions of the felt ongoing process of knowing or experiencing by which this world is constituted.
These are tremendous insights. The human face of the patient constitutes itself here, and we feel a beating heart. They reflect my own experience so penetratingly, that they give back my self in an augmented manner. I learn new things about myself. But notice the chasm that separates the notion of mental illness as expertise - whether we are arguing that personal experience constitutes expertise, or whether we are not, for both positions circle around expertise as something to be prioritized and valued - from the notion of mental illness as an ontological difference. When we speak of personal experience of mental illness in the context of expertise, we are immediately moving lived experience away from the ontological and into the ontic. Rather than focusing on the strangeness of continuous "expressions of the felt ongoing process of knowing or experiencing by which this world is constituted," the lens of expertise instead focuses on "everyday statements about objects in the real world". And this is not only problematic but wrong, in both senses of the word "wrong" - ethically, by eliding the human face, and incorrect, by giving us a picture of mental illness that has very little do do with it.
Comments