Rufus May suggests we consider voices “a meaningful expression of distress”. He encourages recovery through a combination of mindfulness, self-expression and socialization, this approach, in contrast to medication and hospitalization is both hopeful and humane.

It occurs to me that the lived experience of the his patients of must be something akin to living with any disease. the symptoms persist to greater or lesser degrees while the hearers learn to endure. I imagine that if hearing voices was accompanied by physical pain, it might be different.

The overarching premise that guides May as well as McCarthy-Jones (chapter 5) is the idea that the “important transition is not from voice-hearer to non-voice hearer, but from patient voice-hearer to healthy voice-hearer.”

The way May talked to voice of his Top Dog, he engaged in a compassionate dialogue, so rather than  dismissing the voices as a symptom, he is actively engaging the “whole”patient in a sort of group therapy. Through Top Dog, Rufus engaged the patient and the patient achieved a degree integration… This is encouraging.

The stories of voice-hearers are stories of transformation, stories of victory over adversity which ultimately become part of their autobiographical narrative and hence their identities. The self may be shattered by schizophrenia but can be reconstituted and enhanced by recovery.

It strikes me that these ideas are really new and cutting edge, like those of Alvin Noe and dare I say, Susan Blackmore…

Throughout these readings I have been to wondering about the relationship of language to voice-hearing: If a patient did not have the capacity for language, how might the condition be manifest? Is language an integral part of the illness?

The next phase of your research projects will be to compile an annotated bibliography–a list of sources you plan to cite, with a short explanation of what roles they’ll play in your essay.

Cornell University’s library offers a good overview of the genre of the annotated bibliography. It’s worth checking out.

For your annotated bibliographies, you should do the following:

1. Create a full list of works you will cite, in alphabetical order, following MLA Guidelines–or the citation style best suited to your discipline  (most likely APA or Chicago).

2. Write a few, concise sentences that explain how and why these sources will help you make your argument. For example, a source might help you establish motive or illustrate a point; it might provide background information or a counter-argument you want to address. Describe the source’s content as well as its functions in your essay. It may or may not be relevant to offer some details about the author (field of study, previous works, status, etc.).

3. Name the discipline and methodology of the source–and explain how and why these impinge on the role it will play in your project.

4. Conclude each entry by listing which of Mark Gaipa’s “8 Ways to Engage Sources” seem relevant for the source at hand. Feel free also to devise your own categories if none of Gaipa’s seems to apply.

In what way does it exist?

In the midst of McCarthy Jones’ ocean of acronyms it hits me again: that squirmy, Alva Noë feeling—that there’s something else going on. McCarthy Jones is upfront enough, but what does it mean that “brains do not hear voices,” but “people do”? What is the connection between the state of an SZ:AVH+ brain and the phenomenal experience of Rufus May? It’s fascinating the range of data that has been collected, and the simple steps toward understanding different parts of the brain such ventures bring. But in the thick of it all I feel like we’re losing the forest for the trees. Where are we? What were we looking for again?

Something Noë relates in that interview comes to mind, about how no amount of physical examination of a coin will reveal its value. I felt something like that; like we could spin our wheels all day, using all manner of imaging techniques, yet gain little ground understanding a conscious mind. It almost makes me think about the body as something more like a material condition among others (like say environment), which conditions the arrival of consciousness in the way elements of a climate condition the arrival of a tornado.

Kind of an aside to close: I was pretty amazed at the part McCarthy Jones relays early on, about electrostimulation of peoples’ brains to induce perception. I will enjoy puzzling over that for awhile, I’m sure. Also, can I just point out: Penfield and Perot apparently did that experiment incidentally, just because they, like, kind of had their patients’ brains open anyway.

Um—awesome. 

Take that as yet unfounded IRB.

McCarthy Jones sets the tone for his report on the series of neuroscientfic tests being done to study brains of voice-hearers in the very beginning when he points out the terminology being used is meant to decipher the type of patients participating in the studies, and not to make an assertion about the existence of a so-called voice-hearer’s brain, as he says “brains do not hear voices, people do” (191). Although the studies are densely discipline specific, there seemed to be an overall trajectory towards building a better model of the voice hearer’s neurobiological and neurocognitive brain which might reveal the “neural underpinnings” of this condition. All of which requires far more research. What is the interaction between the neuroscientific (versus psychiatric) and the Voice Hearing Network’s approach to voice-hearing?  What is the distinction between psychiatric versus neuroscientific approaches to this condition?

I noted last week in Agnes’ Jacket, Hornstein’s mention of the accomplishments of Dr. Rufus May, as a former schizophrenic patient turned psychiatrist: “Mental health professionals may think they’r the only ones capable of making sense of psychological experience, but Rufus May gives new meaning to the idea of patients taking over the asylum” (17). It was really amazing to place an embodied representation of May with what we read about him in Hornstein’s account of the Hearing Voices Movement.

In the video lecture, May makes several important assertions on the relationship of mindfulness with mental health, for voice hearers, mental disorders or people in general. He makes a correlation between pain management and the acceptance that is the key outcome of mindfulness. Pain is thought to be experienced more acutely when the mind “resists” it, by building up thoughts about the pain itself. Alleviating resistance to the pain allows it to be more manageable. This pain may be likened to the resistance voice hearers feel as targets of society’s intolerance for their condition. So being able to find acceptance internally might make society’s (and as a result, their own) judgment less combatant and therefore less damaging.

May points out the need to become a“confident team manager”with one’s voices allows for all to be heard. His interpretation of one voice becoming dominant or acting as a bully and making others its victims, rather than its friends, seems to carry logic that would be applicable for anyone’s personality in general. May mentions forming a dialogue with distraction when it persistently arises, (as a  worry or stressful thought), as a way of acknowledging it and therefore alleviating the anxiety it is causing. These two concepts remind me of the Major/Minor multiplicity of personality assessment and the need to build awareness of the multi-dimensionality of one’s persona. By managing the multiplicity of one’s personality, a more coherent or peaceful self-narrative might emerge.

I wonder if the idea of the mindful walking; one step forward inhale, one step forward exhale, is stepping outside of oneself to find awareness, as he puts it, or if it is stepping INto oneself, on a physiological level? He remarks the often detrimental misuse of mindfulness to suppress feelings, thoughts, voices, which inevitably erupt in a destructive manner. Could understanding the story of one’s voices also be felt physiologically? It seems the theme of understanding and acceptance is present in the hearing voices movement and I wondered about the embodied component of establishing such integration.

Agnes’s Jacket was one of the most fascinating things that I have read all semester. I have always associated hearing voices with Schizophrenia. I have never thought to separate it. In reading Agnes’s Jacket and Watching….Ted Talk I has lead me to really consider the idea of multiple selves. In both the article and the video it was mentioned that the voices were separate from the self and that the primary self has to be able to control or work with the voices in some way.

I was also fascinated by how “normal” these people seemed once they gained control of their voices. When placed in the hospital, the voice hearers, mentioned in the article and video, seemed to decline. Once they were removed from an environment of the hospital and used a more unorthodox approach they were able to thrive. They were able to live a functional life. This is because for voice hearers, here voices were trying to tell them something or became away for the self to cope with traumatic events.

The title of Gail Hornstein’s book refers to a jacket that belonged to Agnes Richter, who was an inmate of the Hubertusberg Psychiatric Institution near Dresden, Germany. It was probably some time in the 1990s when she embroidered the jacket in a script that has beguiled art historians and language experts, who haven’t been able to decipher what seems to be some kind of narrative logic in the embroidered words.

Agnes Richter’s jacket. The Prinzhorn Collection, University of Heidelberg.

Hornstein describes the jacket as a condundrum that symbolizes the difficult of understanding the first-person experience of people diagnosed with mental illness–which is, of course, the project of her book:

Agnes Richter’s jacket has only rarely been displayed to the public, but its mysterious text has long fascinated art historians. The language appears to resemble Deutsche Schrift, a nineteenth-century cursive script now unintelligible even to highly literate German speakers. However, even experts in this and other arcane scripts find it difficult to make out the letters, many of which are jagged or broken. In addition, much of Agnes’s text is on the inside of the jacket, and these parts, having been worn against the skin, are now faint or unraveling. The significance of the many other colors–blue, red, orange, yellow–remains unknown. Nor is it at all clear where to locate the beginning, middle, or end of the narrative, or to decide the direction in which it should be read: Neck to waist? In circular fashion around the sleeves? Inside first, then outside? (ix)

Later in her introduction, Hornstein asks “What  if the mad are trying to tell us something?What if their ‘ravings’ contain important information? Just because they’re difficult to deciper doesn’t mean we shouldn’t try to make them out” (xiii). Of course, if the embroidery is a transcription of Richter’s suffering–or of voices she heard–it’s likely that it her “narrative” has beginning, middle, or end. Nonetheless, Hornstein claims, “everyone who sees the jacket thinks sense can be made of it” (x).

People can see the jacket because Hans Prinzhorn (1866 – 1933), a German psychiatrist and art historian, collected art created by inmates of various asylums in German, Switzerland, and Austria. The Prinzhorn Collection houses and displays his collection.

I feel this week’s reading ties closely to the ideas I would like to explore in the development of self. I feel there is a stark difference between the biological understanding of life and the phenomenological feelingof living.  Although I subscribe to a strict biological understanding of humans (I feel everything has biological underpinnings, even subscribing to a biological determinism), however, that doesn’t discount the phenomenological aspects of life.  Having this understanding does not suddenly undo millions of years of evolution and cause me to lose my phenomenologica feelings of perception, becoming a machine-like human.  With that being said, I feel like these two disciplines of thought are in competition with each other when they should embrace each as different, but fundamentally connected.

This reading seems to come across the same problem of the inability to synthesize work focusing on the biological and phenomenological. Constantly, Hornstein was astonished at the methods of the HVN and how incompatible they were with her own training in the States. Strictly clinical, her training tended to focus on hearing voices as a symptom of a biological imbalance, to be treated with drugs. Whereas, HVN was less “treatment” in the clinical sense of the word and more just an open forum for those who here voices to find comfort in people like them. These two strategies vary drastically but they are not unconnected. Those who were represented in Hornstein’s book seemed to view the biological as a wrong diagnosis. Maybe not complete, and ultimately detrimental to recovery, but there is a biological underpinning to hearing voices.

I understand the reservation and strife involved with hospitalization involving mental illness and I ultimately believe the HVN is a wonderful organization attempting to use novel ways at treating voice hearing.  However, I think the propensity of both sides to deny the other as useful and/or influential is detrimental to an overall understanding of the experience on a multidimensional level. I feel there is a benefit that can be had from both sides working together to realise there is a biological and phenomenological side to hearing voices.

The contrast between reading about research being done on neurobiological processes and treatment of heard voices (TMS, antipsychotic drugs, lateral processing, connectivity, & neuro-stimulation studies) and the experiences & strategies embodied by had by voice-hearers is stark. The different ways of knowing about voice hearing lead to radically different strategies for dealing with this phenomenological experience. Whatever the cause and wherever voices are “rooted” in the brain’s functioning, strategies of support, trust in the hearer, and mindfulness practice have clearly revolutionized treatment. This resonates with my own experience searching for feeling well, where “feeling better” hasn’t usually meant I’ve gotten rid of anxiety, past trauma, or fears. The question has been, “How can I live with this, if it never goes away?”

I couldn’t help but wonder who funds the research that McAdams’ chapter on neuroscience and voices outlines. Following the money may answer why research that leads to drug development is prioritized  over the effective strategies employed by voice hearers that account for their environmental histories. When hundreds of dopamine and serotonin inhibiting anti-psychotic medications barely work but we keep developing them, there’s always a reason. Not to say that neuroscience can’t help us understand this phenomenon, but it seems we have an ethical duty to ask the questions that will help relieve the intense suffering that many voice hearers experience, and also fund research into strategies that have already proven to have great positive impact on people’s lives.

Neither strategy is incorrect, nor complete. The HVN movement struck me as having many parallels with ACT UP and TAG AIDS activists in the 80s, where people dealing with high-stakes symptoms, poorly understood causes, and ineffective treatments inserted themselves as essential to solutions to a deeply stigmatized and feared condition. Similarly to AIDS, destigmatizing both conditions by acknowledging its existence to oneself and others instead of hiding one’s status or ones voices (hiding what is already hidden), rendering its presence visible in medical and social fields,  and creating  space to discuss its effects on  lives has been invaluable to having a livable life with both HIV and voices.

Clearly, assigning potential meanings to why voices arise and lessons they may teach seems to have helped the case of Helen Chadwick and many others – alleviating the experience of arbitrary torment.  Chadwick questions the source behind the lessons she’s assigned to her voices to make sense of them, asking if they’re “too obvious” – as this integration may be desirable to even if it’s not accurate, because it’s been helpful. A complete prioritization of alternate meanings & a rejection of the study origins of voices in neuroscientific research and drugs is not my point, but the HVN’s success has shown that a reevaluation of a system that positions hospitalization and medication as the only answer is clearly a moral imperative. Whereas the origins of HIV are also still not fully understood, desperate activists with everything at stake held institutions to a moral imperative to acknowledge the impact their intellectual/medical gatekeeping had on thousands of people, and started the process of destigmatization so those with HIV can live livable lives. Perhaps these medical activists have much to learn from one another. 

Disability Studies interests me for two related reasons: First off, there is a kind of large-scale pop culture awareness of a myriad of serious physical/mental disabilities, as displayed for wide audiences in fiction and nonfiction, television and film, and yet, secondly, there seems to be a disparity in the proliferation of representations of various disabilities and popular (mis)understanding of how disability is constructed and propagated. This seems crucial to understanding the Self, as D. Studies seeks to do away with the “normate” us versus the “damaged” or “different” them. The history of disabled representations in culture shows the disabled as abject, outside, villainous, monstrous, or at home only in freak show; the value of these representations being varied but generally amounting to something like “aren’t you glad you ain’t them?” But if we’re reading Garland-Thompson and her definition of the “normate”, which takes on a socio-economical context as well as relying on a model sound body/mind, it becomes clear that, like the nuclear family, the popular conception of the normate is an historically impossible standard that no one truly fits. Instead, various stigmas form hierarchies of abled or disabled bodies that rely on such qualifiers as race, age, sex, status, health, attractiveness, and more. And yet the disabled figure, in all his/her forms, comes to be expressed in one of two different characters – the character for whom disability is the defining characteristic, action, or quality, and who generally follows a kind of dis-normative arc similar to Matt’s conception of a homonarrative, or a token disabled character in a story otherwise populated with “normal” characters who is meant to teach the “normal” characters and, by extension, the “normal” audience, a lesson. These character archetypes play such a dominant role in our understanding of ourselves and difference that it’s hard to move away from, as opinions and expectations in class would seem to suggest. How do we talk about physical or mental disability when we do not understand it, or when or experiences are radically different? (parenthetical sidebar, would Damasio rely on the ever-important binary of “physical/mental” when referring to disability? Or would the placement of mental disabilities in the region of consciousness, and therefore the brain, make them akin to physical disabilities? Again, to what extent does social or emotional trauma impact Damasio’s sense of the brain and consciousness?)

So it’s fitting that Hornstein’s book researches the various organizations committed to building and assisting the Hearing Voices community. Obviously, community is an important quality to the spread of understanding a traditionally ostracizing, stigmatizing condition. Although she (and many other writers we’ve read so far, I’ve noted) strays from using the term “empathy”, the success of the Hearing Voices community hinges on the possibility of a shared experience – a deeper level of camaraderie and connection than the characteristically cold, detached, “normate” status-quo-enforcing medical-pharmaceutical industry (exaggeration for dramatic effect) achieves. And while I wonder about how potentially divisive the formation of differing camps of shared experiences that cannot have an easy cross-over can be, it is obviously helpful, as evidenced in Hornstein’s numerous examples and the TED talk with Eleanor Longden. We discussed how mainstreaming functional examples of people with various diseases (a term they wouldn’t approve of) lessens the significance of people who are really suffering (again, this is tricky), I think the spreading of their stories and the methods that help them achieve this level of functionality can possibly prevent the variegated forces that can result in the less-functional cases of greater extremes from happening in the first place. As these real-life examples become more relevant to a pop-consciousness – similar to the spread of TED talks – the stigmatized, generic, standard forms for disabled representation will have less a grip upon collective imaginations. I’ve made note of a problem with TED talks before, as their easily-digestible messages become widely misinterpreted and misapplied, and while this same thing happens with more palatable depictions of people with disabilities, I think the acceptable-ness of the various examples of people living with Heard Voices (for example) is derived from their ability to cope, and this ability instilled through a nonconventional, possible-fringe method that could benefit from a wider audience.

One way in which this happens is with a shift in vocabulary. Hornstein notes how doctors and nurses and other facilitators involved with these various groups spend a lot of effort in changing the terms typically used when discussing disability, including doing away with such labels as “victim” and “sufferer”  and other diagnoses altogether, and Hornstein maps the importance of this move. I think we had, at some point in this class, discussed the vagueness of language, especially in the sciences, but here we see that a high level of specificity is achievable and actually conducive to a better understanding of experience. The point of Disabilities Studies, in some kind of utopian future, is after all to actually undo itself, as greater connectivity and understanding actually spell the end of the concept of “disability”. Also, I think that’s pretty much the goal of the X-Men comics since their inception, and while I won’t wast anybody’s time going on and on about comic book mutants, I’d argue the X-men are a pretty reputable pop culture conduit for positive understandings of stigma and disability that doesn’t, necessarily, conform to my above-outlined disabled character types… But maybe not, ’tis just my admittedly biased opinion.

Write each member of your writing group a short letter in response to his or her proposal draft. Be sure to address the following questions in your letter:

1. Has the writer included two or three paragraphs and included the elements listed in the proposal guidelines (an explanation of the project topic and genre, a list of texts, and a description of methodology, and a research plan)?

2. What is most intriguing about the project?

3. Is there anything about the proposal that confuses you or leaves you wanting to know more?

4. Does the project seem manageable? Can the writer accomplish the aims s/he articulates? Are the methodology and the genre a good fit for the questions and texts the writer proposes to explore?

5. Can you suggest any sources, ideas, or questions that might be helpful to the writer? If not, can you suggest ways to focus it further?

6. Which of the  paragraphs is strongest? Which is weakest?

7. Is the writer’s sentence-level prose clear and readable? Is it free of typos and errors with regard to punctuation and grammar?

Bring this letter to class. We’ll workshop your drafts in class, and you’ll exchange letters toward the end of the workshop.