Nobody Ever Believes This Story: Slam Poetry as a Palimpsestic Space for Mental Illness Identity

By Chandler Batchelor

Chandler Batchelor is a graduate student in the Literature, Medicine, and Culture MA program at the University of North Carolina at Chapel Hill.  She is interested in alternative and holistic approaches to mental healthcare, doctor-patient relationships in mental healthcare, and mental health advocacy.

Typically, descriptions of mental illness provided by medical professionals are often taken more seriously than descriptions given by the diagnosed themselves. Biomedicine has a particular way of talking about mental abnormalities, describing mental experiences with symptoms. It uses words like “depression,” “flat affect,” and “grandiose sense of self” to depict concrete outward signs of internal dysfunction. In our culture, this biomedical rhetoric is upheld as the definitive, most correct and objective way of describing mental illness. But while biomedicine is an excellent tool for describing diseases, it often fails to capture the subjective nuances of the illness experience. By looking at how the diagnosed talk about their subjective experiences, we can gain new insights that could not be gleaned from a biomedical understanding alone (Estroff, 2003; Kleinman, 1988).

Neuro-rhetorician Cynthia Lewiecki-Wilson (2003) argues that the power to talk about one’s own experience can be reclaimed through the invocation of certain narrative genres that are more collaborative or performative. Specifically, I have found that one way that people with mental illness regain the credibility they need to craft their own identity as a mentally ill person is through the medium of slam poetry—spoken word poetry, usually emotionally intense, that is performed at competitions called “slams.” Additionally, I believe that the metaphor of “palimpsest” is of particular use here. Traditionally, the term palimpsest has been used in the field of art history to describe the practice of scraping, cleaning, and then reusing old manuscripts, placing new writing on top of old. I found that the poets I studied use slam poetry as a palimpsestic process. Each attempts to brush against objective, biomedical rhetoric in their own unique way in order to make a place for their own experiences and identities. The lens of the palimpsest is an important one because these slam poems do more than simply negate medicalized rhetoric in favor of more personal language. These poems resist, clarify, and modify preexisting definitions of what it means to be mentally ill, ultimately producing something not just nosologically meaningful, but personally meaningful. I’ll explore a couple of examples below.

“What it feels like to be bipolar” by Jasmine Schlafke, TEDx Santa Cruz, 2014. The poem begins at 4:30, though her preceding talk adds a lot to what I’m attempting to convey here!

Jasmine Schlafke’s (2014) poem, “What it feels like to be bipolar,” is very much about resisting biomedical labels and the expectations that go along with them. She uses the term “bipolar” several times throughout the poem, but it’s always a relation of what someone else said or her own examination and subsequent rejection of the label. She relates, “And I know you’ve read the articles. You comb my words for symptoms, alchemize my expression to fit what you’ve learned. ‘Excited’ is now ‘manic.’” Even when talking about the psych ward—which she never explicitly calls a “psych ward”—she uses colorful poetic language. She muses, “To those of us forced to share our most beautiful pieces under glass, imagined ourselves museum exhibits, grateful for the patrons even while they wear us down for synapse-delayed reactors with bi-division and big feelings.” This kaleidoscopic diction comes from a very subjective viewpoint that is uniquely Schlafke. Even biomedical words like “synapses” get appropriated into the colorful imaginary “synapse-delayed reactors.”

It is also important to note that this poem is addressed to the poet’s mother. Really, however, this poem could be addressed to anyone who comes into the slam already loaded with expectations about what it feels like to be bipolar. Schlafke sees these expectations as a judgment and a pathologization of her very being. Not only is she reeducating her mother through this poem, she’s reeducating the entire audience. In this light, Schlafke’s poem isn’t only about what it feels like to be bipolar; it’s also about what it feels like to be labeled as bipolar. It’s a stigmatizing, isolating, and at times degrading experience for her. On the other hand, her actual lived experience is much more nebulous and even beautiful at times. What others see as pathological, Schlafke rewrites as “our most beautiful pieces.”

“Anxiety Group” by Catalina Ferro, Urbana Poetry Slam, 2012

The other poem I’d like to share gives a really different treatment to the biomedical rhetoric that Schlafke so disliked. In “Anxiety Group,” Catalina Ferro (2012) throws around a plethora of different biomedical terms, and she doesn’t dismiss them immediately as Schlafke does. She acknowledges the judgment often faced by people who have been diagnosed with some sort of anxiety. She relates, “My father says: ‘Only rich people go to therapy, poor people got shit to do.’” She’s even internalized this stigma to some extent. Near the beginning of her poem, she says, “We are the princes of panic, the ambassadors of anguish. There is no pride here.”

However, there is a shift that occurs in the poem. She takes what’s been traditionally said about anxiety disorders, parrots it, and ultimately really embraces it! With a sly pride, she acknowledges the “psychosomatic twitch,” the “too much saliva,” and the “pounding heart.” These are words that are taken, more or less literally, from the Diagnostic and Statistical Manual of Mental Disorders (DSM 5). Importantly, however, she rejects the stigma that normally goes along with these labels and biological symptoms.

As a whole, this poem moves from a place of perceived judgment and internalized stigma to a celebration of what it means to be anxious. Just as Schlafke does, however, Ferro also adds a bit of her own poetic language to the “anxious experience” in addition to merely responding to preexisting rhetoric. The closing lines of her poem not only reject any stigma that comes along with the “anxiety” label; they also assert that the label is something admirable rather than something shameful.

The first factor that makes slam poetry unique is the poetry slam event itself. If the slam poet can be said to be engaging in a palimpsestic process, then the poetry slam event can be thought of as a palimpsestic space where this process can occur. As a palimpsestic space, a poetry slam fosters what anthropologist Ronald Niezen (2013) calls a “community of affirmation.” This sort of community is formed when an individual has a belief or trait that is socially isolating—like mental illness, for example—but then is able to find others who share, or are at least sympathetic to, these beliefs or traits. Thus, these disparate individuals form a new “counter-community” that thrives and supports each other outside of the mainstream. These communities affirm and encourage whatever divergent quality forms the group’s core value as well as acting as gatekeepers to ward off anyone who may bring in a differing opinion that may challenge that core value.

Poetry slam, image courtesy of YouTube

Through my fieldwork, I’ve seen the slam poetry community form into a community of affirmation in just this way. For example, the adoption of a “poetic identity” is very much encouraged. Audience members shout at the stage such phrases as, “You go, poet!” or when a poet is hesitating approaching the mic, “Take your time, poet!” By constantly calling out this way, the poet becomes interpellated over and over again, and their membership within the community is affirmed. While many of the poets I witnessed simply went by their first names, a few chose unique stage names, such as “Shaken Not Stirred” or “Something Like a Poet.” By dropping their given name in favor of a “more poetic” chosen name, their identity becomes yet more enmeshed with that of the group.

The second factor that led me to focus my analysis on slam poetry is that it encourages vulnerability. The poems that do the best in a slam poetry competition, the stories that are encouraged by the community, are highly personal, confessional, and tell striking narratives about suicide, mental illness, sex, poverty, oppression, and abuse. These are stories that are often very hard to tell, but the vulnerable position in which the poet puts herself fosters trust between poet and community.

Interestingly, this vulnerable position isn’t completely one-sided. The audience is expected to respond—loudly—and to engage emotionally with the poet on a deep level. At the slam I attended, the emcee explicitly instructed the audience that this energy was expected of us as audience members. With every shout, snap, and foot stomp that reverberated with the collective, we in the audience reminded ourselves that this was a space of belonging.

And so, by creating a community that both fosters and rewards vulnerability as well as protects itself from those that would challenge its core belief—the belief that these oppressed identities are important and valid in all of their subjectivity—the poetry slam becomes a sort of palimpsestic space, free from medical hierarchies that may devalue expressions of suffering that fail to conform to cut-and-dry symptomology. By existing outside of these power struggles, the palimpsestic process is allowed to take shape and new identities are allowed to grow and flourish.

For more slam poetry that explores mental illness identity, I recommend the following poems that could not be included here, but nevertheless informed my analysis:

• “The Session” by Jeanann Verlee, NYC Urbana, 2012

• “OCD” by Neil Hilborn, Rustbelt, 2013

• “Explaining My Depression to My Mother” by Sabrina Benaim, NPS, 2014

• “Social Anxiety at 130 BPM” by Aaron Burstein, CUPSI, 2013

• “Virginia” by Kim Frisch, NPS, 2011

• “Couples Therapy” by Patrick Roche, NPS, 2014

• “Anxiety: A Ghost Story” by Brenna Twohy, NPS 2015

• “Anxiety” by Lewis Mundt, Vancouver Poetry Slam, 2013

• “How to Live With Someone Who Can’t” by Antonella Gonzalez, Vancouver Poetry Slam, 2014

• “The Madness Vase” by Andrea Gibson, Page Meets Stage, 2012

• “Suicide Note” by Akeemjamal Rollins, Rustbelt, 2014

• “Talking Shit to Sadness” by Sara Brickman, NPS, 2015

References

American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

Estroff, S. (2003). Subject/subjectivities in dispute: The poetics, politics, and performance of first-person narratives of people with schizophrenia. In J. H. Jenkins & R. J. Barret (Eds.), Schizophrenia, culture, and subjectivity: The edge of experience. (282-302). Cambridge: Cambridge University Press.



Kleinman, A. (1988). The meaning of symptoms and disorders. In The illness narratives: Suffering, healing, and the human condition (pp. 3-30). New York: Basic Books, Inc.



Lewiecki-Wilson, C. (2003). Rethinking rhetoric through mental disabilites. Rhetoric Review, 22(2), 156-167.



Niezen, R. (2013). Internet suicide: Communities of affirmation and the lethality of communication. Transcultural Psychiatry, 50(2), 303-322. doi: 10.1177/1363461512473733



TEDx Talks. [TEDx Talks]. (2014, May 1). Creative resistance as activism: Jasmine Schlafke at TEDxSantaCruz. [Video].



Urbana Poetry Slam. [UrbanaPoetrySlam]. (2012, June 10). Catalina Ferro performs “Anxiety Group.” [Video].



Want to cite this post?



Batchelor, C. (2016). Nobody Ever Believes This Story: Slam Poetry as a Palimpsestic Space for Mental Illness Identity. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/06/nobody-ever-believes-this-story-slam.html

The plague at our doorstep: ethical issues presented by the Zika virus outbreak

By Ryan Purcell

Image courtesy of Flickr user Day Donaldson

“Never before in history has there been a situation when a bite from a mosquito can result in such a devastating scenario.” So says Tom Frieden, director of the US Centers for Disease Control and Prevention (CDC). The Zika virus has captured headlines since late 2015, when word spread north from Brazil that a virus, new to the Americas, may be silently causing alarming neurodevelopmental disorders in newborns. Now, the southern United States is preparing to confront the mosquito-borne illness, which “may become the first great plague of the 21st century.” As public health officials continue to work to mitigate the impact of what the World Health Organization has declared a “Global Health Emergency”, there are several important ethical issues that must be considered. These include a women’s reproductive rights, disability rights concerning those most affected, and the growing realization that poverty-stricken regions and neighborhoods will bear a disproportional burden from this disease. Each of these concerns deserves much more attention than could be provided here. My current aim is merely to point out key issues to stimulate discussion.

In a letter to the editor published in February in The Lancet, Monica Roa of American University made a compelling argument for increased attention to women’s reproductive rights in Latin America in response to the Zika virus outbreak. According to Roa, the recommendation by Columbia, Ecuador, El Salvador, and Jamaica for women to delay pregnancy is woefully out of step with the unfortunate realities of life for many women in these countries. For example, the rate of unintended pregnancy is extraordinarily high due to significant cultural and economic barriers to quality sexual and reproductive health education and services. Moreover, rates of sexual violence are particularly high, contributing to “large groups of women who do not have control over their sexual and reproductive lives.” The UN High Commissioner for Human Rights Zeid Ra’ad Al Hussein, also weighed in: “the advice of some governments to women to delay getting pregnant, ignores the reality that many women and girls simply cannot exercise control over whether or when or under what circumstances they become pregnant, especially in an environment where sexual violence is so common.” Further, the virus can remain in semen even longer than in blood, so why are men also not being advised against impregnating women? To make matters worse, access to abortion services is extremely limited (in some countries it is illegal), and where it is an option for women, many do not understand how to access services.

Termination is not necessarily the answer for many women who have been infected with Zika virus during their pregnancy. First, while it has been confirmed that Zika virus infection in pregnant women can cause microcephaly, it does not always do so. One of the many remaining unknowns is the level of risk to the fetus during maternal infection. Even when a fetus is diagnosed or an infant is born with microcephaly, the disorder can have a range of severity and some children, despite smaller-than-normal head size, have no evident disability. Microcephaly is thankfully rare, but because of this it is not particularly well-understood and support services for these children and their parents are limited, even in wealthy countries. Parents of some children with microcephaly point out how their kids live lives consistently above and beyond doctors’ negative expectations for them in terms of quality of life and lifespan.

Head size comparison of a child with microcephaly and a child
with typical brain development, image courtesy of Wikipedia

The headlines bordering upon hysteria have proven especially difficult for some parents of children with the disorder. As one mother wrote, “The endless pounding of Zika stories, and the descriptions of the grim futures that await the families of microcephalic children, chip away at a façade I’ve built by surrounding myself with friends, family, and a community who value and love my son.” For disability rights advocates, the insinuation that microcephalic fetuses should be aborted is frustratingly familiar. Improving access to sexual health services for women in Latin America should be motivated by a desire to allow women to exercise more control over their lives, not to avoid a “dystopian” future of disabled children. Unfortunately, many of the confirmed cases of microcephaly caused by Zika virus are extremely severe and for some of these children the prognosis may indeed be grim. In severe cases, children can experience seizures, have profound developmental delay, and have visual and motor problems, all of which can be lifelong conditions. Though to quote one parent commenter, “I have a child with microcephaly who is witty, loving, adoring, occasionally a pain in the butt, nosy, and giggly. He makes my world so much better…Some of the coverage has been so painful and callous and ignorant.” It is, however, a reality that in resource-limited settings like rural northeastern Brazil where the uptick in cases was first noticed, the disorder will present a tremendous challenge for parents.

Along these lines, an additional disturbing issue that is now receiving increasing attention is that the Zika virus will likely disproportionately affect those who have the least resources to confront it. In the American South, homes in wealthy areas are air-conditioned with screened windows and well-maintained grounds without standing water. In some cities, like Houston for example, poor, economically-depressed neighborhoods provide excellent breeding areas for the urban, Zika-carrying Aedes aegypti mosquitoes. These types of neighborhoods are even more common throughout poorer urban areas of Central and South America, and are predicted to see higher rates of Zika virus transmission. The unfortunate reality that this outbreak may have an outsized impact on disadvantaged neighborhoods is an ethical issue and an expedient response is an ethical imperative. Republican leaders in the US House of Representatives have stalled passage of a funding measure for Zika response. Would those dollars be freed up faster if Capitol Hill inhabitants were bearing the brunt of this epidemic?

Several research groups are currently at work on a vaccine for Zika, but this will take time to reach the market. The need to have a vaccine, especially one that is safe for pregnant women, presents an additional obstacle to overcome. Nevertheless, it is thought that individuals who have been infected – many of whom report relatively minor symptoms, if any – may be immune to future infections, though this remains to be seen. In the meantime, the issues outlined above need to be addressed. There is a great need for improved sexual and reproductive health education and access to services to give women more control over their futures. There is also an urgent need to better understand the risks to the fetus when a pregnant woman is infected, and better or earlier predictors of prognosis for children born with microcephaly. Amid these needs there are plenty of opportunities for positive outcomes from this outbreak – to better understand and accommodate individuals with developmental disabilities, to shine a light on lagging reproductive rights, and to see more clearly what makes certain segments of the population especially vulnerable.

Want to cite this post?



Purcell, R. (2016). The plague at our doorstep: ethical issues presented by the Zika virus outbreak. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/06/the-plague-at-our-doorstep-ethical.html

Consumer Neurotechnology: New Products, More Regulatory Complexity

By Anna Wexler

Anna Wexler is a PhD candidate in the HASTS (History, Anthropology, Science, Technology and Society) at MIT and a 2015-2016 visiting scholar at the Center for Neuroscience and Society at the University of Pennsylvania. Her dissertation focuses on the ethical, legal and social implications of emerging neuroscience technology, with a particular focus on the home use of noninvasive brain stimulation.

Just when it seemed like the consumer neurotechnology market couldn’t get any stranger—after all, who would’ve expected that a sleek white triangle could be placed on the forehead for “calm” or “energy” vibes—two new products recently hit the market that further complicate the challenges of regulating this emerging market. Halo Sport is a brain stimulator marketed for athletic enhancement that utilizes technology similar to transcranial direct current stimulation (tDCS), while Nervana, which began taking pre-orders in March, is the first noninvasive vagus nerve stimulation (VNS) device to be sold directly to the public in the United States.

Halo Neuroscience, the manufacturer of Halo Sport, advertises that its product “accelerates gains in strength, explosiveness, and dexterity.” In many ways, Halo Sport overcomes obstacles that have plagued other direct-to-consumer brain stimulation products. Because Halo Sport only claims to stimulate the motor cortex—which, conveniently for the company, lies beneath the area of the head where a pair of headphones might sit—the product does not utilize stray wires or a futuristic headset, but instead takes the recognizable shape of headphones. The beneficial effect of a familiar design should not be underestimated: many potentially useful technology tools have failed in no small part due to their unusual “look.”

The motor cortex, image courtesy

of Wikimedia Commons

One of the other barriers to wider uptake of consumer brain stimulation has been that the gains are, for the most part, relatively small. (In fact, it is debated whether tDCS provides any enhancement effect at all.) Even if a product provides a 5% or 10% improvement on cognitive or motor tasks, such a gain might be hardly noticeable to the average individual. But in the realm of professional athletes, small percentage increases are everything: the dividing line between a world champion sprinter and one who does not rank can be measured on the order of milliseconds. Thus, Halo’s decision to cater exclusively to athletes—a population for whom fractional gains in performance separate winners from losers—is a brilliant marketing move.

Though it is less clear who the intended market of “Nervana” is, the company has clearly struck a nerve (literally): their IndieGogo campaign netted a whopping $581,547 in pre-sales. The product, which is billed as the “The World's First Consumer Product to Stimulate the Body's Pleasure Center in Synchronicity to Music” also takes a familiar shape: earbuds are connected to a portable stimulation device that is vaguely reminiscent of a first-generation iPod. According to the company, in “Music Mode,” the device “generates a targeted vagus nerve stimulation output” via the earbuds that synchronizes with whatever music is being played. Since the vagus nerve is involved with the release of neurotransmitters, the company claims that its product promotes the release of dopamine and effectively gets you “high.”

Whether or not these products work as claimed is one issue—Halo, to its credit, has posted a considerable amount of data, though it has yet to be peer-reviewed—because by virtue of being on the market they present difficult problems for regulators. As I have written elsewhere, the question of whether consumer noninvasive brain stimulation devices should be regulated by the Food and Drug Administration (FDA) often comes down to the question of whether or not brain stimulation devices that make only “wellness” or “enhancement” claims can be classified as “medical devices.” So far, however, the discussion of the regulation of direct-to-consumer brain stimulation products has focused on cognitive and mood enhancement. But Halo Sport throws a wrench into the regulatory conversation: would brain stimulation products that claim to athletically enhance be treated differently than those that claim to cognitively enhance? In other words: is there a meaningful regulatory difference between different types of enhancement (mood, cognition, athletics)?

Diagram of the vagus nerve, image courtesy

of Wikipedia

In addition, while Halo Sport is based on tDCS—a technique that is not yet FDA-approved for any indication and therefore has no direct regulatory precedent—the situation with Nervana is slightly more complex. An implantable VNS device—that is, one that requires surgery and sits inside the body—has been FDA approved to treat epilepsy, and has shown efficacy in off-label use to treat depression. Nervana, however, claims to stimulate the vagus nerve from outside the body, through the skin. Though there are preliminary studies on using this kind of transcutaneous VNS (or, tVNS) to treat neuropsychiatric disorders, as of yet, the FDA has not yet approved a tVNS device for use in the United States. Thus, Nervana represents a noninvasive version of an invasive device that is FDA-regulated for treating medical conditions.

In addition to questions regarding state and federal regulatory pathways, it remains to be seen how direct-to-consumer electrical stimulation products will be regulated by professional organizations. Neuroethicists have long compared cognitive enhancement to athletic enhancement, but Halo Sport represents the first time that “electrical doping” for sports has been neatly packaged in a direct-to-consumer product. If the product (and copycat ones) gain a foothold, professional sports organizations will have to decide how to regulate their competitive use. Should agencies ban electrical doping, or perhaps restrict their use to training (and not competition)? Whatever position is taken, the rules will be challenging to enforce, as electrical stimulation may not leave detectable traces in blood or urine.

In the months to come, additional variations of direct-to-consumer electrical stimulation devices are likely to appear, and these products will raise questions that fall squarely at the intersection of law, ethics, and (neuro)science. While to date, the “neurolaw” field has centered on questions of neuroscience in the courtroom, the rise of direct-to-consumer neurotechnology suggests that scholars should pay more attention to how neuroscience enters other realms of law—particularly the regulatory arena.

Want to cite this post?



Wexler, A. (2016). Consumer Neurotechnology: New Products, More Regulatory Complexity. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/05/consumer-neurotechnology-new-products.html

Submit your Abstract for the 2016 International Neuroethics Society Meeting in San Diego!

Mark your calendars now for the 2016 International Neuroethics Society Annual Meeting taking place in San Diego, CA on November 11th and November 12th. This year the conference will feature 2 days of talks, networking opportunities, and poster presentations.

Highlights from the meeting include Plenary Talks by Dr. Steve Hyman of the Stanley Center for Psychiatric Research and Dr. Walter J. Koroshetz from the National Institute of Neurological Disorders and Stroke (NINDS), while the two featured sessions on the 12th are entitled “Mind-Brain and the Competing Identities of Neuroethics” and “Deconstructing Therapeutic Neurotechnology 'Narratives': A Case Study of DBS for Depression.”

Moderated by Dr. Eric Racine from the Institut de recherches cliniques de Montréal, “Mind-Brain and the Competing Identities of Neuroethics” will discuss three perspectives of neuroscience: empirical, speculative, and pragmatic, and these three views will be presented by Dr. Paul Applebaum, Dr. Tom Buller, Dr. Jennifer Chandler, and Dr. Saskia Nagel. “Deconstructing Therapeutic Neurotechnology 'Narratives': A Case Study of DBS for Depression” will also highlight three different viewpoints; neuroscientist Dr. Helen Mayberg, philosopher Dr. Sara Goering, and journalist Mo Costandi will explore how to interpret DBS patient narratives. The panel will be moderated by Emory University’s Dr. Karen Rommelfanger.

Thursday's events will take place in the San Diego Central Library

The 2016 INS Meeting will also kick-off the International Ambassador Program with a 2-hour session on international neuroethics. While the 1st hour will focus on discussions from leading international figures, the 2nd hour will involve breakout group sessions that include topic such as career opportunities from national neuroscience initiatives, how exchange programs can encourage communication, and how oversight groups will differ among national agencies.

There is still time to participate in the 2016 Meeting! Important deadlines to consider are listed below. 

• The abstract deadline for a poster presentation has been extended to June 15th

• The 3rd Annual Student/Postdoc Essay Contest deadline has been extended to June 30th 

• Logo Contest submissions are due June 30th