Neurodevelopmental Disability on TV: Neuroethics and Season 1 of ABC’s Speechless

By John Aspler and Ariel Cascio

John Aspler, a doctoral candidate in Neuroscience at McGill University and the Neuroethics Research Unit, focuses on the experiences of key stakeholders affected by fetal alcohol spectrum disorder, the way they are represented and discussed in Canadian media, and the potential stigmatization they face given related disability stereotypes. 



Ariel Cascio, a postdoctoral researcher at the Neuroethics Research Unit of the Institut de recherches cliniques de Montréal, focuses primarily on autism spectrum conditions, identity, subjectivity, and biopolitics. 



Introduction

Television can be an important medium through which to explore cultural conceptions of complex topics like disability – a topic tackled by Speechless, a single-camera family sitcom. Speechless tells the story of JJ DiMeo, a young man with cerebral palsy (CP) portrayed by Micah Fowler, who himself has CP. The show focuses on JJ’s daily life as well as the experiences of his parents and siblings. JJ’s aide, an African-American man named Kenneth, voices for JJ, as the latter uses a head-mounted laser pointer to indicate words and letters on a communication board (explaining the show’s title).

In this post, we explore key themes in disability studies and how they are addressed by the show. We also reflect on the effectiveness of Speechless’ narrative in reflecting on these concepts, specifically: 1) the social model of disability; 2) ‘inspiration porn’; 3) the ‘R-word’; and 4) intersectional feminist concerns about how the show connects disability to discussions on gender, class, and race. Our analysis fits the pragmatic neuroethics paradigm, which centres lived experiences of key stakeholders affected by neuro-diagnoses and disabilities (Racine et al. 2011).

*Spoiler Alert for Season 1 of ABC’s Speechless*

The Social Model of Disability

The cast of ABC's Speechless.

(Image courtesy of Flickr.)

In the mid-1970s, as disability rights activists agitated for change worldwide, a novel way of thinking about disability emerged. Mike Oliver (1983) coined the phrase “the social model of disability” to describe the view that disability is rooted in society rather than in biology. While the traditional (or “individual”) model of disability (also called the “medical” or “deficit” model) refers to assumptions that people are disabled by impairments in their bodies or minds that need fixing, the social model argues that people are disabled by environments with insufficient ramps, discrimination, and other barriers.

In Speechless, typical storytelling tropes found in sitcoms can both highlight and distract from the role the environment plays in enabling or disabling people. Suddenly appearing objects, animals, or characters serve as quick comedic resolutions to seemingly serious problems or as a reset button to ensure a return to the show’s status quo. Speechless applies this trope to accessibility. In the episode “S-U-R---SURPRISE,” as JJ attempts to defend his little brother Ray against a bully, a dog he met earlier that episode appears at just the right moment to scare the bully away¹. In “T-H-- THE C-L—CLUB,” JJ conveniently gains access to an unrealistically effective electronic communication board, which serves as a tool to bring to light JJ’s complicated feelings about his reliance on and affection for Kenneth. When JJ decides not to replace Kenneth with the board, it disappears forever. In this fashion, the show subtly alludes to the social model of disability by demonstrating that, in an environment without barriers, JJ faces little to no problem being the kind of young man, friend, and brother he wants to be.

Inspiration Porn

“Inspiration Porn” is “an image of a person with a disability […] doing something completely ordinary […] carrying a caption” with an inspirational message (Young, 2012). The intent of inspiration porn is to allow non-disabled people to “put their worries into perspective” (e.g., “what’s your excuse?”). It objectifies people with disabilities for the benefit of viewers without disabilities. These messages also erase the challenges faced by people with disabilities (e.g., “the only disability in life is a bad attitude”).

This is the kind of image that might get captioned with an

inspirational quote, creating "inspiration porn."

Image courtesy of the U.S. Air Force. 

In “H-E-R---HERO,” Ray defines inspiration porn as “a portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people.” A student JJ barely knows chooses to speak about him for a school-wide speech contest on the topic of “My Hero.” JJ and Ray conspire to write the most inspiring speech they can imagine – to outdo the stranger. Despite their efforts, Ray ultimately decides to give a more authentic speech about sibling squabbles: “…he can be a real jerk. He teases me and tortures me – runs me over with his wheelchair… he’s just living his life, and there’s nothing brave about that.” The audience claps awkwardly (one audience member comments: “That did not make me feel good.”), and, of course, the fake-yet-inspiring speech wins instead.

The episode is also metatextual, as the show itself could be read as inspiration porn. The showrunners must balance producing a show ‘about’ disability with avoiding essentializing or objectifying the characters. This episode seeks to counter this risk not only by pointing out that JJ – following a certain cultural script of a typical “older brother” – can be a jerk to his siblings, but also by ‘punching up,’ i.e., making less marginalized people (producers and consumers of inspiration porn) the butt of the joke.

The R-Word

“P-R-- PROM" addresses another important theme through its discussion of “the R-word.” Not only does this episode address the more obvious issue of ableist slurs (i.e., the harms associated with casually employing disability-related terms as an insult), but it also delves into important nuances within disability politics. Even within movements for inclusion such as the disability rights movement, segmentation can have an impact on the way people with different needs are perceived and assisted. For example, the public may assume that someone like JJ, who cannot verbalise, has an intellectual disability (Larivière-Bastien et al. 2011). Although indicating that he does not (as JJ’s mother does in the pilot, saying “he’s all there upstairs”) is completely reasonable and appropriate, doing so can entail shifting stigma onto other groups within the umbrella of disability.

Image courtesy of Twenty20.

Speechless rejects this shift when Ray reflects: “It’s not about JJ and [the r-word] not being an accurate description of him. What about people who do think a different way or at a different pace? Should we reference them in a nasty way when we do something dumb because we think it’s cute?” Setting aside that “dumb” is also an ableist slur, it is refreshing to see the show promote inclusion of all differences.

Intersectionality

A final key theme, drawing from feminist theory broadly, is intersectionality, i.e., the way that “intersections of race and gender, of heterosexism, transphobia, xenophobia, ableism, all of these social dynamics come together” (Crenshaw, TED). Notably, there are glaring tensions in the way that the show explores the intersection of disability and gender.

JJ’s behaviour toward women, which can occasionally be problematic, stems from the understandable goal of normalizing JJ – to have him be just like other teenage boys on TV (i.e., horny and a bit of a jerk). Ray’s behavior toward women and girls, however, reflects larger problems. Ray (again, perhaps like other teenage boys on TV) has a poor understanding of how to treat women and receives frequent encouragement from characters who should know better (e.g., his father). The metatext of the show seems oddly oblivious to how Ray’s attitude toward women reflects the “nice guy” trope – the idea that some men understand relationships as an exchange in which they pay the currency of niceness (through words, acts, gifts) in exchange for the goods of a kiss, a relationship, or a hook up. In other words, niceness is instrumental, not genuine, and sex is treated as a commodity. While we can understand the tension in JJ’s case, the show struggles in how it frames Ray’s treatment of women.

Speechless also explicitly focuses on issues of class. The DiMeo family is not wealthy. Their bathroom doesn’t have a door, they argue with insurance companies, and Dad works as an airport attendant. Ray especially struggles with the pressures to be or appear wealthy, which leads to episodes like “T-H-- THE C-L—CLUB,” where Ray tries to become a country club insider. A later episode (“C-H—CHEATER”), in which Ray similarly tries to get rich quick via a pyramid scheme, nuances Ray’s desires about wealth by exploring the intersection between family, work, and disability. Ray explains that his desire to make money is “for JJ. Later. Do I help? Is there a plan? I want to be ready.”

Image courtesy of Wikimedia Commons.

Finally, Speechless also addresses issues of race, gender, and voice through JJ’s aides. JJ’s first ‘voice’ is a woman with a higher-pitched voice and a timid approach to repeating JJ’s more colorful language choices. After meeting Kenneth, JJ tells him he “sound[s] cool” and offers him the job instead. Black masculinity is often configured as cool, which the show at once explores with nuance and also casually exploits.

Ultimately, JJ values having an aide whose voice seems more authentic; however, the line between JJ and Kenneth is blurred by the show in sometimes strange ways. In one episode, Kenneth goes to school when JJ does not and finds that he has no one to eat lunch with because he is not, in fact, friends with JJ’s friends – an explicit reflection on that line. In another episode, JJ joins the choir and, in a particularly surreal twist, lands the solo with Kenneth’s voice and, later, dance moves. The other characters here appear to interpret Kenneth as being JJ, not just as voicing for him.

However, the show is careful about drawing comparisons between the types of marginalization Kenneth and JJ experience based on race and disability respectively – exploring some overlap, but not overselling the similarity. For example, when Kenneth hears Ray and JJ writing their inspiration porn speech, he points out similarities with the ‘Magical Negro’ trope, which Kenneth defines as when “the black character is just there to help the white guy on his journey and he mainly speaks in folksy sayings.”

Conclusion

In this post, we highlighted ways in which the television show Speechless addresses challenges and stereotypes faced by people with neurodevelopmental disabilities. While often successful, there are several ways in which the show falls short – especially in how it understands gender. Nonetheless, media portrayals of neurodevelopmental disability provide fruitful material upon which neuroethics scholars can reflect and which will hopefully have a positive impact on the public sphere.

References

Larivière-Bastien, D., Majnemer, A., Shevell, M., and E. Racine. 2011. Perspectives of Adolescents and Young Adults with Cerebral Palsy on the Ethical and Social Challenges Encountered in Healthcare Services. Narrative Inquiry in Bioethics 1(1): 43-54.

Oliver M. 1983. Social Work with Disabled People. Basingstoke: Macmillan.

Racine, E., E. Bell, N. C. Di Pietro, L. Wade and J. Illes. 2011. Evidence-Based Neuroethics for Neurodevelopmental Disorders. Seminars in Pediatric Neurology 18(1): 21-25.

Young, S. 2012. We’re not here for your inspiration. ABC News. Accessed 12 October 2017 at http://www.abc.net.au/news/2012-07-03/young-inspiration-porn/4107006.

**Confusingly, most official ABC videos we link to here do not include subtitles.

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Aspler, J and Cascio, A. (2018). Neurodevelopmental Disability on TV: Neuroethics and Season 1 of ABC’s Speechless. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/01/neurodevelopmental-disability-on-tv.html

Allies and Enemies in the Fight for Mental Health Reform

 By Nathan Ahlgrim



The Need for Allies

Image courtesy of Wikimedia Commons.

Mental healthcare in the United States is in need of serious reform. Mental healthcare is less accessible than other services, and efforts to repeal the Affordable Care Act could put adequate care out of reach for millions more Americans.

Opposition to mental healthcare reform comes from all sides, with the popular talking points demanding law and order, fiscal responsibility, and moral accountability. Still, the consequences of un- or under-treated people interacting with un- or under-trained authorities are hard to ignore, most strikingly in the criminal justice system. Americans with mental illnesses are sixteen times more likely to be shot by police, and more than half of all inmates in America suffer from mental health problems. Mental health reform, then, stands to benefit the healthcare system, criminal justice, and family structure itself.

Given the opposition, legislative policy victories will require a rallying of the troops and solidarity among all conceivable allies. Though it is tempting to welcome any and all help, even the purest of idealists can be hamstrung by allying with activists who actively fight the mainstream. The decisions of who to include and exclude as allies can determine a movement’s success as much as the message itself.

Patch Adams

Image courtesy of Wikimedia Commons.

I recently returned from a week of volunteering at the Gesundheit! Institute (yes, the exclamation point is a part of the name). The brainchild of Dr. Patch Adams (in collaboration with a group of classmates and now ex-wife Linda Edquist), the institute was established on the dream of providing free, personal, and caring healthcare as well as a healthcare system that seeks to improve quality of life instead of simply delaying death. Oh, and it is a clinic populated by clowns.

Clowns were and are intimately woven into the fabric of Gesundheit. The Institute was popularized by the sappy and critically derided (but personally cherished) 1998 biopic Patch Adams starring Robin Williams as the clown doctor himself. The movie chronicles Patch’s revolutionary approach to medicine and the opposition he faced to the unorthodoxy of putting the words “clown” and “doctor” in the same job description. In real life, the team operated a free clinic for a renegade twelve-year period, during which they saw more than 15,000 patients. They closed in 1984 to spread the mission, find funding, and build a permanent hospital in West Virginia. As I saw first-hand, the 321-acre land in rural West Virginia is a tangible counterpoint to the American healthcare system. Thirty-three years later, the work is still in progress.

Patch believes in holistic care. Critics often simplify his care philosophy to “laughter cures all.” As jarring as a clown doctor can be, he is far from the only one who takes advantage of laughter therapy. Many nursing homes incorporate deliberate laughter and humor into their care [1, 2], and laughter has been reported to increase psychological resilience and even some physiological measures like pain tolerance [3] and immune activity [4]. Although, not surprisingly, a major weakness in the research linking humor and health is its anecdotal and subjective nature [5, 6]. Patch does believe in laughter as medicine, in conjunction with traditional Western medicine and complementary treatment strategies. In modern parlance, Patch’s philosophy might best be described as promoting wellness above and beyond physical health.

The "Dacha": the main building on the property.

The Gesundheit! Institute grew out of his dissatisfaction with the ineffective and impersonal treatment he received as a patient. And yet, his beliefs about mental health, their causes, and the responsibilities of those struggling with mental health problems can be a hard pill for advocates and allies to swallow.

Conceptualizations of mental illness

Crucially to the matter at hand, Patch dismisses the physiological causes of mental health disorders like depression and attention deficit disorder, going so far as to label those with such illnesses as being morally responsible for their condition (see reactions to speeches here and here). He did release a touching statement following Robin Williams’ tragic suicide, but his primary reaction (relayed by his colleagues) was that “[Robin Williams] did not have any friends.” I cannot defend this position as a neuroscientist and an advocate for those suffering from mental health conditions.

The lens of depression blurs all existing friends until they cease to matter, an effect I have experienced first-hand. Biological mechanisms influence many diseases, and medications can provide relief for many patients. At the same time, I know that over-medicating patients is a real concern, even if a universal consensus seems out of reach. Herein lies the dilemma. Patch offers compassionate care, but disregards the biological basis of mental illnesses. In his mind, lifestyle choices are the principal cause, fault, and blame. His statements are jarring in the current medical context, but the pendulum of mainstream medical opinion has swung erratically between personal responsibility and biomedical etiology of mental illness over the past few centuries. Where the pendulum stops is more than a semantic matter. Everything from treatment outcomes to community acceptance is dependent on how we describe mental health and the people who suffer from related disorders

Stigma

Image courtesy of Pixabay user geralt.

Stigma, as described by Dr. Patrick Corrigan, grows out of the progression from stereotypes (attitudes about groups of people) to prejudice (when you agree with those stereotypes) to discrimination (behavior influenced by prejudice). Potential patients hide from the looming stigma, which can decrease treatment-seeking behavior and kick off a self-perpetuating cycle of isolation [7]. Just how members of the LGBTQ community had to overcome stigma and isolation at the beginning of the gay rights movement, Dr. Corrigan urges people with mental illnesses to “come out” about their status. The only way to decrease stigma is to show that everyone knows someone who is a part of this community.

Should we treat a person as sick or as deficient? I was tempted to champion the biomedical model in the face of Patch’s dismissal. I personally find Patch’s opinion, that mental illnesses like depression are a controllable choice, disrespectful to those suffering from mental illness. It minimizes the biological (and uncontrollable) hurdles that they must overcome. In doing so, his vision of universal healthcare would paradoxically remove necessary treatments from these patients.

Although the National Institute of Mental Health promotes the narrative of biological mechanisms in an effort to mitigate stigma felt by patients (from themselves and others), the net effect of this narrative depends on what sort of stigma is measured. Attributing mental illness to biological mechanisms correlates with decreased social distancing of the person with the illness (i.e. less shunning and shaming), but it also increases how dangerous people with schizophrenia or depression appear [8]. Not only that, but emphasizing the biological cause of a disorder above all other factors is an easy way to breed a perception of helplessness and a lack of control [9]. “Othering” is easy when mental illnesses are confined to a categorically different type of person [9]; however, negating the biology blames the person, causing any mental problem to spring from character flaws and weakness [10]. That is why an integrated biopsychosocial model is indispensable: illnesses are frequently triggered by the environment – be it relationship stress, emotional trauma, or other psychological insult – but the trigger will not spark an illness in the absence of a biological vulnerability (as in the diathesis-stress model [11]). As such, many psychiatrists and neuroscientists now promote an interdisciplinary and holistic view of mental health.

By departing from a holistic approach, figures like Patch can harm the very people I try to advocate for. When this happens, is he still an ally, or does he become an enemy to the cause?

What is doing ‘good’ look like?

The easiest approach would be to identify allies with a simple cost/benefit analysis. Within that framework, Patch’s philanthropy and humanitarian clown tours would land him solidly in the ‘ally’ category. Even so, his opinions can compromise the respect for people with mental health disorders, at a serious cost for those affected.

The communal farmhouse - a place of comfort.

Ultimately, I believe allies are anyone who helps, and Patch helps. According to the caretakers at the Gesundheit! Institute, much of the steady funding for the Institute comes from people with mental illnesses who were helped by Patch and put him in their wills. He does not help everyone, and he may even do some damage along the way, but his good is tangible. To be sure, Patch (and many of those at Gesundheit!) hold unscientific views. I heard everything from the moral model of psychiatric disorders to shamanism and practical magic (the latter two coming from the land managers, not Patch). As a scientist, I do not share those ideas. Even so, I recognize the utility in including everyone who shares the mission to help alleviate the suffering of mental illness as partners.

I loved my time at the Gesundheit! Institute. I truly did. I went to clowning workshops led by an Italian couple who spent their earlier years in a free love commune where they housed “the crazies that the crazy hospital kicked out.” I communally cleaned, ate, gardened, and slept. I connected on a human level in the absence of technology. I was recharged, reenergized, and rejuvenated. Even with objectives and missions so different from mine, I am honored to call them friends, and thankful to call them allies.

References

[1] Ko H-J, Youn C-H. (2011). Geriatrics & Gerontology International 11: 267-74.

[2] Low LF, Goodenough B, Fletcher J, Xu K, Casey AN, Chenoweth L, Fleming R, Spitzer P, Bell JP, Brodaty H. (2014). Journal of the American Medical Directors Association 15: 564-9.

[3] Weisenberg M, Tepper I, Schwarzwald J. (1995). Pain 63: 207-12.

[4] Bennett MP, Zeller JM, Rosenberg L, McCann J. (2003). Alternative Therapies in Health and Medicine 9: 38-45.

[5] McCreaddie M, Wiggins S. (2008). Journal of Advanced Nursing 61: 584-95.

[6] Martin RA. (2001). Psychological bulletin 127: 504-19.

[7] Schomerus G, Angermeyer MC. (2008). Epidemiologia e psichiatria sociale 17: 31-7.

[8] Parcesepe AM, Cabassa LJ. (2013). Administration and policy in mental health 40: 10.1007/s10488-012-0430-z.

[9] Hinshaw SP, Stier A. (2008). Annual Review of Clinical Psychology 4: 367-93.

[10] Feldman DB, Crandall CS. (2007). Journal of Social and Clinical Psychology 26: 137-54.

[11] Salomon K, Jin A. Diathesis-stress model. In: Gellman MD, Turner JR, editors. Encyclopedia of behavioral medicine. New York, NY: Springer New York; 2013. p. 591-2.

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Ahlgrim, N. (2017). Allies and Enemies in the Fight for Mental Health Reform. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2017/11/allies-and-enemies-in-fight-for-mental.html

"Inflammation might be causing depression": Stigma of mental illness, reductionism, and (mis-)representations of science

by Katie Givens Kime

Image courtesy of Flickr

“Is depression a Kind of Allergic Reaction?” Provocative headlines like these appear throughout popular media. Besides misrepresenting scientific findings, such journalistic coverage impacts perceptions of mental illness, as well as expectations of those seeking treatment. In last month’s Neuroethics in the News talk, Dr. Jennifer Felger, from Emory’s Department of Psychiatry and Behavioral Sciences, shared her experiences and insights on the translation (and mistranslation) of research by journalists. In relating the story of her own interactions with the media, Felger emphasized the complex and varying transactional relationships between journalists and scientists. The impact of such coverage carries notable neuroethical dimensions, potentially affecting the capacity for agency and/or aspects of a sense of self for a person experiencing mental illness.

The work of Felger and others on the role of inflammation in depression emerges from widespread observations that stress and other psychological experiences, particularly chronic stress, can weaken immune responses, leaving individuals more susceptible to illness. Such vulnerability can lead to common illnesses, like colds and flus, or even contribute to major illnesses, like cardiovascular disease, cancer, and inflammatory illnesses. On the other hand, once the immune system is activated by disease, stress, trauma, or even treatments for medical illness (e.g. chemotherapy), activated immune cells can release inflammatory mediators like cytokines. These mediators, along with the immune cells, can move into the brain, affecting neurotransmitter function, leading to behavioral changes, and even causing clinical depression.

Image courtesy of GetStencil.com 

The particular area of research for Felger and some of her colleagues involved examining the mechanisms of cytokine action on the brain, and determining how cytokine action can lead to specific depressive symptom clusters. Felger’s findings suggest that for patients with increased inflammation (including patients with depression), anti-inflammatory or pro-dopaminergic treatment strategies might target decreased corticostriatal connectivity and improve motivational and motor deficits.

In essence, Felger and her colleagues found evidence that suggests a higher level of inflammation increases the likelihood of depression. Furthermore, patients with depression who have higher levels of inflammation may experience different symptoms of depression, which are related relate to the effects of inflammation on the brain. Publication of these findings led to articles in news outlets, for example, “Inflammation may be causing depression in about one-third of patients?” Although such articles did emphasize that depression is a heterogeneous disorder with wide variations in symptoms, they often oversimplified the nuances of Felger’s research regarding the relationship between inflammation and depression. More importantly, in this particular article, unpublished observations on the frequency of depressed patients with increased inflammation, which is highly sample and study- specific, was emphasized without attention to supporting scientific literature. Promotion of oversimplified and preliminary statements by the media can bias interpretation of the findings by other scientists, health providers, and the general public alike.

During her talk, Felger shared how her recent experience with the media has changed the way in which she considers framing and phrasing her research for scientific journals. She suggested that it can be helpful to anticipate the types of quotes the press will use. Having a rough sense of the terms that journalists are likely to grab can preclude some misrepresentations, reductionisms, and reinforced stigmas of mental illness by the media. Knowing the sort of coverage a journalist is seeking is important to help a researcher determine how they should best respond. Felger noted that a piece seeking to narrate the “general movement in the field” is much harder to write well than a piece focused on a singular study or set of findings. With more general overviews, cherry-picking of particular findings or implications is more likely to happen, resulting in higher incidences of misrepresentations.

Another helpful strategy that Felger highlighted is utilizing institutional resources for communicating research. In Felger’s case, working with Emory’s Woodruff Health Sciences Center (WHSC) Office of Research Communications was highly productive. A staff member from that office collaborated with Felger on a press release, headlined “Inflammation linked to weakened reward circuits in depression.” Despite using such institutional resources, Felger is clear that she and her colleagues have no foolproof way to avoid misrepresentations of their research findings.

Fortunately, some journalists are aware of their responsibility to represent research findings accurately. In Felger’s case, some journalists shared drafts of their story before they went to press, seeking a back-and-forth collaboration to ensure ethical reporting. For example a recent article from Oprah.com in which Dr. Felger was interviewed, “Is this why you feel bad? 6 issues tied to inflammation.”

In Felger’s experience, emails and messages to her from members of the general public also highlighted the stakes of these matters. In the changing terrain of health information, clinicians and researchers face the inevitable complexity that most patients search the internet for information about their symptoms or diagnoses. Moreover, patients will directly contact the researchers themselves. Felger noted the difficulty and importance of crafting ethically appropriate responses when members of the public sought interaction with her on her research. Such a situation is even more ethically fraught when the researcher is an investigator and not a physician — in such cases, researchers must work with physicians to construct ethically responsible responses.

Image courtesy of Wikimedia Commons

One example of the stakes of these issues is a piece published by the BBC about three months ago: “Depression: A revolution in treatment?” The article is a relatively standard representation of how the media has covered the topic of links between depression and inflammation, though it is hardly the biggest culprit in terms of misrepresentation or distortion of research findings. Notably, the text of the piece is interrupted with a quiz titled “Could I be depressed?” and a first question, “In the last two weeks: How often have you been bothered by having little interest or pleasure in doing things?” Such interactive features are quite obvious indicators of the readership for such media pieces, and the dangers involved. The disclaimer on the quiz echoes these concerns, “If you are having trouble understanding any of these questions, or at any point you start to feel distressed, please stop and seek the advice of a medical professional. See the links below for organisations that may be able to help you.” Though such disclaimers are included, is it appropriate to be encouraging self-diagnosis through such features?

The neuroethical dimensions to these matters extend beyond clinically and ethically appropriate communications with individual members of the public, however. Perhaps the most pronounced neuroethical matters at stake are the reinforcement of stigmas and the prioritizing of biological etiology. Felger shared her experience of the rapacious hunger for biological explanations of mental illness. She received message after message from people thanking her for “finding the answer” to their depression. Similarly, in the BBC article, an individual diagnosed with severe depression is quoted as saying, “If there was a way to say depression was a physical problem, I think it would make a massive difference, I think people would treat depression as something that is not made up and going on in the head. It would be seen as a genuine condition, it would validate a lot of people's feelings.” It is a summation of how the media’s portrayal of the connection between inflammation and depression not only implies a mechanistic solution to mental illness, but also reinforces the message that biological explanations (rather than lifting of stigma) is the way for an individual suffering mental illness to be released from blame for their illness.

The current trajectories of neuroscientific research suggest we are likely to see more and more exciting and important findings emerge as to the embodied, biological aspects of mental illness. It does not inevitably follow, however, that such findings must be interpreted and communicated in ways that split the nature of mental illness into a false binary that equates biological etiologies with release from blame, and equates psychological etiologies with blame-worthiness. Felger noted how public discourse about mental illness in the U.S. (as well as BRAIN projects on a national level) remains stuck in outdated debates about biological explanations for mental illness.

Moving forward, an important role for neuroethics is watching for how research findings communicated in the popular media contribute, for good or for ill, to the ways in which individuals understand and relate to their own health, in all its complexities.

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Kime, KG. (2016). "Inflammation might be causing depression:" Stigma of mental illness, reductionism, and (mis-)representations of science. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/12/inflammation-might-be-causing.html

"American Horror Story" in Real Life: Understanding Racialized Views of Mental Illness and Stigma

By Sunidhi Ramesh

Racial and ethnic discrimination have taken various forms in the

United States since its formation as a nation. The sign in the image

reads: "Deport all Iranians. Get the hell out of my country."

Image courtesy of Wikipedia.

From 245 years of slavery to indirect racism in police sanctioning and force, minority belittlement has remained rampant in American society (1). There is no doubt that this history has left minorities in the United States with a differential understanding of what it means to be American and, more importantly, what it means to be an individual in a larger humankind.



Generally, our day-to-day experiences shape the values, beliefs, and attitudes that allow us to navigate the real world (2). And so, with regards to minorities, consistent exposure to these subjective experiences (of belittlement and discrimination, for example) can begin to shape subjective perceptions that, in turn, can mold larger perspectives and viewpoints.

Last spring, I conducted a project for a class to address the reception (3) of white and non-white, or persons of color (POC), students to part of an episode from American Horror Story: Freak Show. The video I asked them to watch portrays a mentally incapacitated woman, Pepper, who is wrongfully framed for the murder of her sister’s child. The character’s blatant scapegoating is shocking not only for the lack of humanity it portrays but also for the reality of being a human being in society while not being viewed as human.

Although the episode remains to be somewhat of an exaggeration, the opinions of the interview respondents in my project ultimately suggested that there exists a racial basis of perceiving the mental disabilities of Pepper—a racial basis that may indeed be deeply rooted in the racial history of the United States.

The premise behind my project was the understanding that past experience informs perception. What, then, are the different circumstances (in regards to mental illness/disabilities) that white and POC Americans are facing? Current public health research suggests that there exist racial differences in the field of mental health.

In 2010, for example, researchers at the University of Pittsburgh found that internalized stigma among African Americans had a direct relationship with attitudes towards their mental heath treatment (4); in general, African Americans in this study reported more negative attitudes toward mental health treatment, and, as compared to their white counterparts, African Americans were less likely to seek out mental health treatment and were more likely to hold negative views about themselves if they were diagnosed with a mental illness (4).

Another study conducted in 2012 validates these results, finding that African Americans are significantly less likely than other race-ethnic groups to have received mental health services (5); although the article begins to tie this trend to education differences among the different racial groups, a definitive explanation for the relationship between race-ethnicity and the receipt of mental health services could not be found (5).

Beyond studies regarding the specific treatment of mental illness is research that questions the root of mental illnesses such as depression; one such study found a “clear, direct” relationship between perceived discrimination (which arises from “formative social experiences”) and symptoms of depression in Mexican-origin adults in California (6).

The conclusions drawn in these studies as well as those in other similar research imply that mental illness does not stand on its own; it, in fact, is a factor that is intertwined (rather strongly) with race as well as elements that underlie race such as discrimination and education.

Because the subjective experiences faced by minorities formulate differential understandings and subjective perspectives, these perspectives (according to these studies) can then go on to create different attitudes towards mental health. Ultimately, this cascade can form bigger more personal feelings such as internalized and public stigma.

With this comes a question: what if the differences in the way POC and White Americans are treated (either for mental illnesses or in general) manifest themselves in how different racial groups perceive mental health?

A photo of a freak show exhibition, taken around 1941. The 

sign at the top reads: "Human Freaks Alive." 

Image courtesy of Wikimedia Commons.

Before getting into my project, I must mention that Pepper, throughout American Horror Story, is part of a “freak show”—a term that the dictionary defines as “a display of people with unusual or grotesque physical features as at a circus or a carnival show."As I was watching the show for the first time a few years ago, I was appalled at how it presented the reactions of people who interacted with the “freaks.” There was shock, amusement, fear, and even a sense of superiority. In one scene, the circus actors went out to a diner and were immediately kicked out on the grounds of “disturbing and scaring the other customers.” More often than not, the families who attended the circus would disrespect and taunt the performers.

I later realized that this scene illuminated the major difference between physical disability and mental illness. Physical disability can be seen; it is outward and apparent to a point where it can be identified and acknowledged as easily as it can be mocked and ridiculed.

Mental illness cannot. It is invisible, an uninvited guest that only the patient can feel, describe, and identify. It is silent. Quiet. Unseen. (This distinction regarding mental illness is why hundreds of articles with titles such as “I Don’t Believe in Mental Illness” and “9 Signs Why Your Mental Illness is Made Up for Attention” plague the Internet.)

People who bear mental illnesses are told that their symptoms are not real, that “laziness explains 100% of mental disorders,” or simply that their illnesses “does not exist.” These kinds of perceptions build up and begin to create stigma around mental illness.

Statistically, three out of four people who experience mental illness today have reported experiencing stigma. This stigma leads to feelings of shame, hopelessness, distress and misrepresentation in media. It discourages patients from seeking necessary help. It frames mental illness as a shameful blemish and weakness.

And in many cases, stigma and discrimination come hand in hand; often, those with mental illnesses and disabilities are denied employment, housing, insurance coverage and general social interactions such as friendship and marriage (7).

Worst of all, this very stigma throws mental health patients into a dangerous cycle of social isolation and harm.

According to a 2002 research paper written by Allison J. Gray, “Discrimination alters how patients see themselves, their self worth and their future place in the world. The immediate psychological effects of a psychiatric diagnosis include disbelief, shame, terror, grief, and anger” (8). She then argues that these patients eventually face social isolation, which directly leads to high rates of self-harm and suicide.

So, how and where do we go from here? Can we work toward destigmatizing mental illness?

Or is this a lost cause? Could the racial discrepancy between perceiving disabilities be too deeply rooted to change how these conditions are perceived? And where does this racial difference come from?

For this small preliminary class project, I asked ten respondents (five white and five POC) to watch the aforementioned 30-minute clip. This episode covers the experiences of a young woman, Pepper, who suffers from microcephaly, a rare neurological condition “in which the brain does not develop properly, resulting in a smaller than normal head” as well as intellectual disability, poor speech abilities, and abnormal facial features. In the clip, Pepper is introduced into the care of her older sister and her brother-in-law, a couple that later gives birth to a deformed child. Although Pepper cares for and loves the child as her own, her caretakers appear to be overtaken by “the burden” of having to deal with two individuals who are unable to fully look after themselves. In response, Pepper’s brother-in-law (with permission from his wife) murders the infant and places the blame on Pepper, who is unable to speak for herself but seemingly unaware of the injustice done to her. At the end of the clip, Pepper is placed in an insane asylum, forced to live there due to her supposed involvement in the brutal murder of her sister’s child.

A comparison between head sizes for a child with microcephaly

and a normal child. This change in head shape is often attributed

to abnormal brain development. Image courtesy of Wikimedia 

Commons.

Following the viewing, I asked each respondent seven questions regarding their overall feelings as well as what characters and parts of the plotline resonated with them the most. In the end, I found three general categories of responses—each of which was clearly divided racially.

The most striking of these categories was, by far, how the white and POC respondents referred to Pepper’s microcephaly. I should preface with the fact that the episode never directly labeled her condition, and Pepper’s mental and physical statuses were not referred to as a disability in the scenes the respondents viewed. Still, every white interviewee spoke of Pepper’s condition as a “disability”—a handicap that allowed her to be bullied by her family and the justice system. These students seemed to dwell on the idea that Pepper was subordinated in the minds of those around her. To them, she was bullied for and handicapped by her mental state.

The POC respondents, on the other hand, did not use the words “disability” or “handicap.” Instead, they speak of her as an “outsider,” a deviation from what it means to be “normal.” This word, “normal,” was raised by every POC respondent. These students chose to discuss Pepper’s experiences in light of their own by drawing parallels between what it means to be a functioning, “normal” member of this society and the consequences of being the opposite, when an individual deviates from those norms (discrimination and outcasting).

Although these data are just preliminary, the implications, if these results held true with a larger pool or participants, are tremendous. At the least, these outcomes suggest that human perceptions of mentally and physically compromised individuals are racially based— that there may exist a socially constructed phenomenon for why white respondents viewed Pepper as “disabled” and POC respondents saw her as simply “not normal.”

If anything, the tendency for the POC individuals in my interviews to focus more on the aspects of being “normal” (rather than being discriminated) suggests something about the more personal aspects of the minority experience. It is possible that this theme was so salient because the question asked for the interviewees to relate the clip to their own personal lives (9); perhaps the notion of mental disabilities is not as prominent to these POC individuals as it may have been to the white respondents (as was suggested by the public health studies on POC Americans and mental health). Again, the validity of this statement should be explored through further research.

Schlitzie (born Schlitze Surtees) was an American 

sideshow performer; Pepper's appearance and 

story are said to be based on Schlitzie's life.

Image courtesy of Wikipedia.

Whatever the case, the answers to these questions are not clear. They may never be clear or easy to address—unless we are somehow able to pinpoint exactly where these entangled differential perceptions stem from or whether or not they can be changed. What can change, however, is the stigma around mental illness.

If the relationship between subjective experience, differential understanding, subjective perception, different mental health treatment and attitudes, and stigma exists, can we tap into breaking the cycle? Can we try to change mental health treatment by better educating our doctors and mental health professionals? Can we change mental health attitudes by better explaining conditions to patients or the general public? Would changes in the initial subjective experience (reducing discrimination, for example) reduce mental health stigma down the line?

And would this stigma be alleviated with more evidence for a biological basis to mental illness? Possibly (10, 11, 12).

But this would require research as well—research that is deliberately designed to avoid reinforcing negative stereotypes. In other words, while bias is inherent to some degree in all research, specific biases such as gender and racial bias need to be consciously monitored in this research to avoid being implicitly implemented into the research process.



How can this be done? The Journal of European Psychology suggests engaging in introspection to acknowledge any biases before the research is conducted, including different types of people and viewpoints on the research team, standardizing procedures for data collection and checking for statistical significance—all while being aware of the errors and omissions that may be embedded in the research itself. Maybe, with these cautions in mind, we can work towards more direct, objective research that can lead to the lessening of stigma (especially towards specific races) around mental illness.

Until then, we must begin to realize that perception of mental illness is not black and white; it is socially directed, differentially interpreted, and variably understood. More importantly, it is profoundly engrained in experience and identity.

This understanding needs to come first.

Perhaps then we can begin to unravel the answers to the bigger questions we have.

Note: The students in my project were asked to watch two segments from Episode 10 of Season 4 of American Horror Story: 1) 31:53 to 37:20 and 2) 38:41 to 49:00.

References 



1) Piazza, James A. "Types of minority discrimination and terrorism." Conflict Management and Peace Science 29.5 (2012): 521-546.



2) Rokeach, Milton. The nature of human values. Vol. 438. New York: Free press, 1973.



3) Shively, JoEllen. "Cowboys and Indians: Perceptions of western films among American Indians and Anglos." American Sociological Review (1992): 725-734.



4) Brown, Charlotte, et al. "Depression stigma, race, and treatment seeking behavior and attitudes." Journal of community psychology 38.3 (2010): 350-368.



5) Broman, Clifford L. "Race differences in the receipt of mental health services among young adults." Psychological Services 9.1 (2012): 38.



6) Finch, B. K., Kolody, B., & Vega, W. A. (2000). Perceived discrimination and depression among Mexican-origin adults in California. Journal of Health and Social Behavior, 295-313.



7) Office of the Surgeon General (US, & Center for Mental Health Services (US. (2001). Culture counts: The influence of culture and society on mental health.



8) Gray, A. J. (2002). Stigma in psychiatry. Journal of the royal society of medicine, 95(2), 72-76.



9) Trepte, S. (2006). Social Identity Theory. In J. Bryant & P. Vorderer (Eds.), Psychology of Entertainment (pp. 255-271). Mahwah, NJ: Lawrence Erlbaum.



10) Corrigan PW, Watson AC. At issue: Stop the stigma: call mental illness a brain disease. Schizophrenia bulletin. 2004;30(3):477-479.



11) Corrigan PW. Lessons learned from unintended consequences about erasing the stigma of mental illness. World psychiatry : official journal of the World Psychiatric Association. 2016;15(1):67-73.



12) Insel TR, Wang PS. Rethinking mental illness. Jama. 2010;303(19):1970-1971.

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Ramesh, Sunidhi. (2016). "American Horror Story" in Real Life: Understanding Racialized Views of Mental Illness and Stigma. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/11/american-horror-story-in-real-life_22.html

Prescribing the Placebo Effect

By Sarika Sachdeva

This post was written as part of a class assignment from students who took a neuroethics course with Dr. Rommelfanger in Paris of Summer 2016. 

Sarika Sachdeva is an undergraduate junior at Emory studying Neuroscience and Behavioral Biology and Economics. She is involved with research on stimulant abuse and addiction under Dr. Leonard Howell at Yerkes National Primate Research Center. 

In 2006, Dr. Ted Kaptchuk designed a clinical drug trial to evaluate a new pain pill in patients with severe arm pain. Participants in the study were assigned to receive either the pill or an acupuncture treatment for several weeks. Dr. Kaptchuk found that the people who received acupuncture ended up with more pain relief than those who had taken the pain pill. This difference was surprising, not because the pain pill was expected to be more effective, but because neither treatment was real- the pain pills contained cornstarch and the acupuncture was done with false needles that never pierced the skin.

Placebos are often considered baseline measurements, used as the standard scientific method to determine if a drug is actually making a biological difference or if its effects are just ‘inside the head’ and no better than a sugar pill (Anderson 2013). Utilizing the placebo effect as a form of treatment carries a stigma: only 0.3% of physicians admit to regularly prescribing them, in contrast with data that indicates around 50% of physicians actually do (Rommelfanger 2013).

Image courtesy of Pixabay

Recently, however, there has been a growing body of evidence that placebos produce real physiological changes, making them an active treatment not unlike ibuprofen, aspirin, or other traditional pharmaceuticals. This would explain why Dr. Kaptchuk’s study resulted in two separate outcomes for two different placebos. The first evidence of the idea that placebos are not inert came from a study on coronary heart disease that compared the mortality rates of a fat-lowering drug against a placebo. The results were insignificant; there was less than a 1% difference in mortality between the drug and the placebo, but a closer examination of the results revealed an interesting trend. In both the drug and the placebo groups, the participants who occasionally missed doses had a much higher mortality rate than the group that fully complied with the schedule by about 10% (Speers 2011). In other words, how often the placebo, or inactive pill was taken had a significant impact on mortality. This challenged the assumption that placebos have no physical impact on the body. Other studies using functional brain imaging scans have provided further evidence of the physiological changes produced by mere placebos. One of these studies compared fMRI scans in the brains of depressed men who had either taken a placebo or an antidepressant and found that both led to similar increases in activity in areas associated with pain in the prefrontal cortex and decreases in areas associated with anxiety in the amygdala, a clear indication of the validity of a placebo (Benedetti et al. 2005).

The physiological effects of a placebo treatment have important implications when considering treatment options for patients. This is of special importance for conditions that have no known treatment, or for when many treatment options have been exhausted with no success. Because placebos are not accepted as an active form of treatment, they are often not considered or taken seriously (Hernandez et al. 2014). In light of the fact that placebos have proven physiological effects and success no different from other medications and treatments, not using their benefits in a mainstream way may actually be prolonging the pain and afflictions of people with conditions that could be treated with a placebo (Rommelfanger 2012).

Use of the placebo as a treatment must be done with caution and within ethical limitations (Lichtenberg et al. 2004). The most polarizing aspect of the placebo is if the patient is being deceived because they think they are being given an effective medication when instead they are being treated with an inert pill seemingly unrelated to their condition. This does not qualify as deception: firstly, the placebo pill is not inert and has been shown to have physiological effects as mentioned previously. Secondly, if the physician informs the patient that they are being given a treatment that has proven to be effective, they are not lying. The physician does not have to pretend the placebo is a miracle cure or that he or she knows how it works in order to prescribe it to a patient that could benefit. Deception is believed to be necessary for the placebo effect to take place, but this is not necessarily the case (Blease et al. 2016). A physician could simply tell their patient that they are being given a placebo that has been shown to work for no apparent reason, eliminating all concerns about deception while still benefiting from the placebo’s effects.

Based on research into the efficacy of placebos and evidence that indicates they are not inert, I advise that the placebo be recognized as a valid form of treatment which physicians may choose to prescribe at their discretion with patient consent. I recommend medical practice regarding placebos be refined in order to accommodate recent research and account for potential ethical concerns through a three-fold approach:

1) Educating patients about the known and unknowns of placebo as a treatment, thereby allowing patients to make an informed decision when deciding to consent to a treatment that may be a placebo, or that they know is a placebo.

If a placebo is a viable treatment, physicians should present it as an option along with any other treatments being considered. The physician should detail the advantages of a placebo treatment, ideally in person, and clarify the word ‘inert’ as it inaccurately defines the placebo as a fake treatment whose effects are ‘all in the head’. Patients should also be informed of the difference between not knowing they are taking a placebo and knowing that they are, and physicians who use placebos should respect a patient’s decision if they would or would not like to be told if they are being given a placebo.

2) Training healthcare professionals with a standardized protocol in order to avoid misconceptions and ensure that the latest research is accounted for in their practice.

This will help avoid patients being given contradictory information by different physicians, pharmacists, or nurses and keep them up to date with the latest research on the efficacy of placebos so that they can incorporate details of optimal conditions into their practice. This training can be implemented as part of their license renewal.

The standardized protocol should include guidelines on how to treat consent for placebo treatments. Physicians can choose not to disclose that the medication they are given is a placebo; however, if asked about the drug specifically by a patient, the physician must disclose that the medication is a placebo. Physicians must honor a patient’s decision to choose not to be treated with a placebo after presenting them with that option.

3) Encouraging and funding further research into the physiology, efficacy, and optimal conditions of placebos.

Further research into placebos, especially into the potential negative effects, is needed to determine the conditions and subset of patients under which it is most effective. The method through which a placebo is administered is important to its outcome, so even factors such as the prescribed dosage and color of the pill can impact the results. This information can also be used to make non-placebo medication more effective, similar to how dosage curves are established in clinical drug trials. Research is also needed into the mechanisms behind which placebos work, which can provide valuable insight towards several diseases.

The above approach will help destigmatize placebo treatments in medicine and open up viable treatment options to people unable to be treated through other medication. Placebo treatments expand the potentials of modern medicine by creating real physiological results through nonspecific treatment. The placebo effect is seen even when knowledge that a placebo is being given is known and informed consent can allow patients to be comfortable that the medicine they are receiving is legitimate, even if it is a ‘just’ a sugar pill.

References: 



Anderson, L. 2013. What is a Placebo. Drugs. Available here



Benedetti, F., H. S. Mayberg, T. D. Wager, C. S. Stohler, and J. Zubieta. 2005. Neurobiological Mechanisms of the Placebo Effect. The Journal of Neuroscience. Available here.



Blease, C., L. Colloca, and T. J. Kaptchuk. 2016. Are open-label placebos ethical? Informed consent and ethical equivocations. Bioethics. Available here.



Hernandez, A., J. Banos, C. Llop, and M. Farre. 2014. The definition of placebo in the informed consent forms of clinical trials. PloS One. Available here.



Kaptchuk, T. J., W. B. Stason, R. B. Davis, et al. 2006. Sham device versus inert pill: randomized controlled trial of two placebo treatments. BMJ. Available here.



Lichtenberg, P., U. Hereseco-Levy, U. Nitzan. 2004. The ethics of the placebo in clinical practice. Journal of Medical Ethics. Available here.



Rommelfanger, K. S. 2012. Take two placebo pills and call me in the morning. Huffpost Science. Available here.



Speers, R. 2011. The power of drug compliance: Active ingredient or placebo. Modern Medicine Network. Available here.

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Sachdeva, S. (2016). Prescribing the Placebo Effect. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/10/prescribing-placebo-effect.html