the cost of mad knowledge
One of our friends in the mad posse is going through a rough patch. We've not heard from him, and worry that he's overwhelmed and unable to respond to our inquiries. The last time I saw him, at one of our meetup groups, he indicated how transformative the Mad Studies course had been for him so far, and the impact it was having on his life.
Most of us on the course bring what is called 'lived experience' to our studies. We have histories of depression, mania, eating disorders, psychosis and even suicide attempts; histories of entanglement with the psychiatric system and even hospitalisation... and those histories bleed into the present. So we're juggling the workload and the stress of assignments and deadlines with our other responsibilities, on top of sometimes fragile states of mind. When we focus our scholarly attention mainly on the shortcomings and injustices of the mainstream mental health system, this brings us face to face with our personal experiences. It can be like unpicking a scab, or scratching at an open wound.
Is it worth it? I think it is. I think it's incredibly important that actual mad folk infiltrate the academy on matters of madness. Otherwise we're just the guinea pig subjects of speculation and patronisation by those who claim their expertise secondhandedly. As Richard Saville-Smith points out in his book Acute Religious Experiences, “Mad studies is an emerging approach which is premised on the very reasonable argument that the traditionally marginalised voices of those who have experiences of madness may critically contribute to the process of knowledge exchange and theory development.”
On the other hand, why do we privilege the academy to begin with? Surely it exists as an institutional framework in support of the status quo? Allowing only for approved sources disallows the myriad experiences of those outwith the official structure of academia. And mad knowledge is especially disallowed:
One very common way that madness is positioned in the West is as not being credible witnesses to our own experiences, not able to give believable accounts of ourselves and being outside the hermeneutic fields, or fields of meaning, prevalent in society. That is, mad people are not credible knowers; at the level of knowledge itself they are disempowered, subject to [what Miranda Fricker terms] epistemic injustice. (Diana Rose, Mad Knowledges and User-Led Research)
For those of us with lived experience, academia is a double-edged sword: in order to participate in The Discourse, one must be prepared to participate at one's own expense. The cost may be high in terms of personal welfare, when digging into the topic of madness unearths one's own traumatic experiences and psychological struggles.
But again, I think it's worth it. Change doesn't occur linearly; it is a complex, messy, unpin-downable process with myriad entry points. There is room for change via the academy, and room for change outwith the academy. All these efforts collectively create change in a system which sorely needs it. Social change has always carried a personal cost, and the mad movement is no exception. Mad scholarship demands that the mad folk bring our most vulnerable selves into the realm of scrutiny and concerted effort. We do it willingly, in order to participate. And so I circle back to where I started, just hoping that my friend is alright.
Photo by Liza Polyanskaya on Unsplash
This reminds me of the distinction made between Folk Wisdom with its “primitive sources” (including so-called “Chinese Medicine” and related fields) and what I’ll call “The Western Academy of Science.” The latter relies on the impersonal scientific method while the former relies on an accumulation of traditional experience, sometimes even personal anecdote (Carlos Castenada), and some culture’s reverence for those the Western model considers “ill,” a very limited construct which dehumanizes so many patients because doctors and allied professionals are taught to treat illnesses not people.
That said Western science is beginning to entertain some of these traditions as evidenced by acupuncture having a place in Western Medicine and the “rediscovery” of hallucinogens as a therapeutic path. RD Laing in “The Politics of Experience,” first published in the 1960’s, was one of the first to take the Voice of Madness seriously and the book has gone through several editions.
If people have not yet supposed I should reveal that my credentials are not simply as an MD who chose psychiatry (long retired) but also as someone who has faced some ferocious challenges to my mental and physical health that I’ve managed to get successfully treated and which have allowed me to adapt successfully enough to make it to 75.
I can say without reservation that there are systems of care which have existed in this country (and may exist in others) which to some degree took the experience of madness seriously enough to make treatment a humane effort, though it may be hard to find them now. San Francisco, where I trained in the 1970’s, had a Community Mental Health system with many layers that spanned numerous dimensions of care from psychiatric emergency outposts throughout the city to inpatient, 3/4 way house, 1/2 way house, and outpatient care. The folksy “Barefoot Doctor of the People” theme (mythology?) infused much of the medical community, especially students, resident trainees and younger MD’s. Sadly the funding dried up and such systems are much harder to find in this country now. During my years of practicing actively the patient’s “voice” was what I was taught to listen for above all, however “mad.”