This essay focuses on specific teaching assignments, strategies, and resources designed to help undergraduate students think critically about key concepts in bioethics—such as autonomy, paternalism, informed consent, and competency—using examples and case studies involving people diagnosed with schizophrenia. The assignments described below are disability-rights inspired interventions into the students' career-focused mindsets and training; one of my main strategies is social decentering, or having students examine a situation from a variety of theoretical and subjective perspectives. Exposing students to online talks by people diagnosed with schizophrenia and similar primary sources helps those students without first-hand experience to better understand these different points of view. While these assignments are primarily geared toward bioethics classes, they include resources and ideas for class activities that might be useful in other courses within disability studies, mad studies, psychiatry, literature, or film.
Introduction: Goodbye Russell Crowe, Hello Elyn Saks
A Beautiful Mind, the Academy Award winning film, based on the Pulitzer Prize winning biography, about the Nobel Prize winning John Nash, was ground-breaking in its attempt to position the audience in Nash's mind and to depict the delusions that he experienced with sympathy and clarity. Yet despite the fact that the film is based on Nash's life, it is a Hollywood, fictionalized version of his experiences with schizophrenia. Akiva Goldsman, the screenwriter, chose to personify Nash's auditory hallucinations, rendering them more legible to the film's viewers: for example, a little girl's voice becomes a little girl who viewers can both see and hear in the film (Nasar). While not necessarily accurate, Goldsman's keen decision to portray voices as characters takes full advantage of the medium of film and helps the audience realize how compelling and persuasive Nash's delusional thinking was to him. In 2001, when the film was released, it was rare to see such careful attention paid to depicting the inner world of a person diagnosed with schizophrenia. It still is rare.
However, since the release of A Beautiful Mind, more people diagnosed with schizophrenia are telling their stories themselves: for example, there are new autobiographies such as Elyn R. Saks's The Center Cannot Hold: My Journey Through Madness (2007), Richard McLean's Recovered, Not Cured: A Journey Through Schizophrenia (2003), Erin L. Hawkes' When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia (2012), Ken Steele's The Day the Voices Stopped: A Memoir of Madness and Hope (2001), Kristina Morgan's Mind Without a Home: A Memoir of Schizophrenia (2013), and Roberta Payne's Speaking to My Madness: How I Searched for Myself in Schizophrenia (2013). There are also recent full-length documentaries featuring people with schizophrenia, and even TED Talks about the experience of psychosis.1 And if you search diligently, you can literally find the next generation of John Nash online—his son, also a mathematician, also diagnosed with schizophrenia (see Andreasen and Wallace). For bioethics instructors, these resources offer us new opportunities for including the lived experiences of people with schizophrenia into our classrooms in ways that are more immediate and relevant today.
Undergraduate Bioethics and Disability Studies
At my institution, which is a private technology-oriented university that focuses on career training, I teach undergraduate bioethics courses in two departments: philosophy and health sciences. My approach to each course necessarily differs because of the demands of these disciplines: there is obviously more focus on philosophy in the first course, and more focus on legal issues in the second. Yet the real appeal of these courses, and the idea that I try to stress with my students (especially those in the philosophy course), is the fact that in an undergraduate bioethics classroom, students have the room to explore moral issues in ways that are relatively free from the restraints of their future professions, yet still pertinent to their careers.
For example, in the beginning of the course it is not uncommon for a student preparing for graduate study in a health profession to approach a case study wishing to know the correct answer, or to want to be told the correct way to respond to an ethical dilemma, or to want to know the proper legal response to a problem. But this is an attitude and a way of thinking that I want to push to the side, temporarily at least. Why? Because it is a sad fact that some ethical decisions in health care are primarily motivated by "what do we need to do in order not to get sued?" rather than "what is the right thing to do for the patient?," and the answers to those questions are not always the same. Sometimes in professional situations, ethical problems can devolve into rules-based decisions that are devoid of attention to moral detail. In the name of ethics, for example, healthcare workers in the U.S. learn to invoke HIPAA (the Health Insurance Portability and Accountability Act) in creative ways that some critics charitably describe as "the well-intentioned over-regulation of medical records" (Dreger) but that others recognize as a bureaucratic subterfuge that often seems to defy basic common sense. As one physician states, "When hospitals talk about HIPAA or charge for releasing records what they're really saying is, 'I don't want to do this and I have to find an excuse,'… HIPAA is used in all sorts of distorted ways, because 'protecting privacy' sounds good" (Rosenthal). And in worst case scenarios on the job, legal issues can trump and silence discussion of moral issues: people sometimes "do the wrong thing in order to do the legal thing" (Schneider and Bramstedt 92).
The undergraduate bioethics classroom, therefore, gives students a relatively rare opportunity to exercise a wide-ranging freedom of thought as they confront case studies. They can ask, what precedents in case law should inform our decision-making here? And also, how would a utilitarian parse this problem? What insights would a feminist ethics of care perspective add to this discussion? What might a disability rights activist say about this issue? What do I think is the just moral response and what informs my thinking? The ideal end result is to promote critical thinking about ethics that can inform a student's professional life later. In other words, the disability-consciousness-raised students will not simply learn their profession's code of ethics, but will also, in a perfect world, vigilantly assess whether those ethics truly foster best practices and if they adequately protect and respect the rights of patients. And, as engaged and empowered professionals, they will collaborate to challenge or change practices when necessary.
Of course, this is an ideal outcome; it is not a guaranteed result. But, the potential gains are well worth our investments in time and effort as disability scholars and activists. As Adrienne Asch argued, actively participating in the field of bioethics is "crucial to advancing our work in disability studies and disability rights" (297). Our interventions should be many and should be waged on multiple fronts.
Disability studies interventions into bioethics have long focused on issues of physician-assisted suicide, withholding medical treatment for disabled infants, prenatal testing and selective abortion, and other related dilemmas. In this essay I will focus on topics directly related to people diagnosed with schizophrenia because I believe that attention to issues of mental illness has been relatively scarce in disability studies scholarship and, furthermore, because people diagnosed with schizophrenia are especially underrepresented in both fields.2 The following assignments revolve around key concepts—such as autonomy, informed consent, and competency—which have specialized definitions in the field of bioethics, and which benefit from the critical interventions that a disability studies perspective offers.
Assignment #1: Autonomy, Paternalism, and Informed Consent in Out of the Shadow
Out of the Shadow is a documentary about Mildred (Millie) Smiley, who is diagnosed with paranoid schizophrenia, directed by her daughter Susan and filmed over many years. The film captures Millie Smiley in her severely agitated, verbally abusive states when she is paranoid, and later as a gentle and caring mother and grandmother, when her symptoms have abated. The film contains many interviews with Millie herself and her family (especially Tina, Millie's other daughter), and follows Millie's search for appropriate, supported housing (she has lived in 47 places in 20 years). This is a very difficult film that describes both the child abuse Millie's daughters experienced at her hands, and their steadfast support of their mother in her illness when they are adults.3 The relationship among Millie and her daughters illustrates what Stacy Clifford Simplican has recently described as "complex dependency": in this model "individuals inhabit both intense vulnerability and aggressive power" (219). Yet Millie's story ends on a hopeful note: she has a private room in a group home, a job she enjoys, and she is reunited with her extended family. The film engages with many topics central to bioethics—including autonomy (self-determination and self-governance), competency (the ability to make decisions about medical care), and paternalism (making a decision that is believed to be in the best interests of a person, but without the person's explicit consent).
This assignment focuses on a particular event in the film, when Tina, Millie Smiley's youngest daughter, tricks her into signing a consent form to receive anti-psychotic medication. At this point Millie has been hospitalized for two weeks, and throughout that time has consistently refused treatment and medication. Knowing that her mother wishes to leave the hospital and live closer to her, Tina has her sign a consent form under the pretense that she is applying for an apartment. Afterward, Susan and Tina argue about whether this was an ethically appropriate action. Susan maintains that what her sister has done is deceitful: she has lied to their mother, who wants to be free from medications and also free to leave the hospital for an apartment of her own. However, due to Millie's recent behavior, she cannot return to her former housing and is facing emergency placement in a nursing home. Tina maintains that even though she has lied, she has remained true to her mother's wishes. The medication, she argues, will enable her to be free from her disruptive paranoid symptoms and thus free to move forward with her life, which will include the opportunity to transition to better housing.
In this assignment, students first debate as a group whether or not this deception can be justified, and then evaluate the case in an individual writing assignment after the class discussion. Supporting documents include former MindFreedom director David Oaks' "The Moral Imperative for Dialogue with Organizations of Survivors of Coerced Psychiatric Human Rights Violations," and selections from the course textbook, Biomedical Ethics, on autonomy and paternalism (DeGrazia 41-51), and from the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, "The Values Underlying Informed Consent" (DeGrazia 120-125).
The assignment can be structured as a formal debate in class, with pairs or small groups of students representing different viewpoints and connecting concepts in bioethics to this case (for example, analyzing the sisters' different positions, examining Millie Smiley's objections to medications, exploring the decision from a utilitarian or Kantian point of view, describing Oaks's position on coerced treatment, researching the conditions and definition of autonomy and paternalism, and the requirements of informed consent as they pertain to this particular situation). Alternatively, this groundwork on different perspectives and pertinent concepts and theories can take place first in an online discussion board where pairs or small groups of students are assigned these topics. Following this, a more informal class discussion can take place. At the end, students are asked to reflect in writing individually about whether or not they believe Tina's deception was morally justified, why they hold this opinion and how they justify their opinion while analyzing concepts of autonomy, paternalism, and informed consent. I also ask students to identify what opposing argument they find most compelling, and their response to this opposing argument.
This assignment is designed in part to introduce students to the consumer/survivor/ex-patient movement via the Oaks's reading, which emphasizes a rights-based approach. Many of my students find the rights-based approach very appealing as future healthcare professionals, because they tend to oversimplify it. For example, if a person diagnosed with schizophrenia has an inalienable right to make all decisions relating to his or her healthcare at all times, then as professionals it absolves them of any responsibility if those decisions are harmful. The concept of autonomy in bioethics, however, has a specialized definition that can be used to complicate some students' initial understanding of a rights-based approach. The principle of autonomy in bioethics refers in general to a patient's self-governance and self-determination, which must be respected, maintained, and fostered. As Beauchamp and Childress argue in their classic Principles of Biomedical Ethics, respect for autonomy is more than non-interference: it is a "positive obligation" to the patient that healthcare professionals are required to meet (64; emphasis in original). Following Immanuel Kant, this is not a negative (or "perfect," absolute) duty one must refrain from (such as not killing someone); it is a positive (or "imperfect") duty that one must actively pursue (such as promoting the conditions for other people's self-actualization). In bioethics, autonomy is fluid and complex. Several conditions must be met in order for a person to truly exercise autonomy: 1) intentionality (unlike Millie's signature on the form, a person must intend to agree to a procedure), 2) understanding (a person must understand the risks or benefits of a treatment or procedure), 3) freedom from external restraints (freedom from "occurrent coercion"—the use of physical force—and freedom from "dispositional coercion"—the threat of harm), and 4) freedom from internal restraints (such as the compulsions of addiction or the temporary impairments of psychosis) (DeGrazia, Mappes, Brand-Ballard 41-45). Autonomy, therefore, is not a given or a static category that we can assume by default: it should not be viewed as an unexamined "normal" state. When Tina has her mother Millie sign consent forms, none of these conditions for autonomy have been met. Yet one could argue, as Tina suggests, that freeing Millie from the internal restraints of her psychosis is a necessary first step toward promoting her autonomy. Students are quick to note that this decision is very much in keeping with consequentialism (the ends justify the means), as well as being paternalistic, and they are also usually quite critical of Tina's methods. This is a good place to reintroduce the rights-based approach of Oaks and to recall the words of Elyn Saks, who is simultaneously "pro-psychiatry" and "anti-force" ("Elyn Saks"). Students are then ready to reflect in the individual writing assignment about the complexities of Tina's decision and about the challenges of both respecting and promoting a patient's autonomy.
Assignment #2: Competency and Psychiatric Advance Directives in Unlisted
In the documentary film Unlisted, a physician, Delany Ruston, reestablishes contact with her father, Richard Ruston, who lives in supported housing and is diagnosed with paranoid schizophrenia. The film's title refers to Delany Ruston's previous efforts to hide from her father; because of his significantly disruptive behavior, she changed her phone to an unlisted number so that he could not contact her. It has been 10 years since they have seen each other. The film, narrated by Delany, uses interviews with Richard and their family, as well as excerpts from the autobiographical novel Richard wrote while in the early stages of his illness in college. Since many of my students aspire to careers in healthcare, the fact that the narrator is a physician helps to engage them. Yet at the same time, watching this professional deal with very personal problems helps to complicate and situate the practice of medicine in a social context. Here the personal is both political and professional.
This film lends itself to the discussion of many topics related to disability studies, such as the stigma of mental illness, the lack of adequate housing choices for people with severe psychiatric disabilities, and the obstacles that often prevent access to social services for people with disabilities. But, arguably, one of the most provocative segments in the film is when Delany tries to get her father to complete a Psychiatric Advance Directive, or PAD. As the scenes progress, from a conversation on a park bench to an awkward lunch, Richard Ruston grows increasingly agitated. What begins as a seemingly playful loose-word association on a sunny bench—with Richard singing "Ground Control to Major Tom" in response to his daughter's questions—ends with him pacing and terminating the discussion in a deserted restaurant, while Delany focuses on mechanically filling out the form, line by line. For example, she asks him who should care for his pets if he is hospitalized, although she knows that he has no pets. These scenes are simultaneously absurd and tragic; Richard is experiencing an active psychotic episode in this scene, and Delany seems unable to adjust her behavior in response to his crisis and unable to recognize that his autonomy is compromised. Richard will eventually flee from his supported housing, will cut off contact with his family, whom he believes to be in danger because of him, and will drown himself. And later Delany will interview the woman who witnessed her father's suicide.
In this assignment, I ask students to reflect upon these scenes in the film and to learn more about living wills and psychiatric advance directives. Supplemental readings may include selections from the textbook on hierarchies of decision making (informed consent, substituted judgment, and best interests) (Vaughn 145-146), Vicki Michel's "Suicide by Persons with Disabilities Disguised as the Refusal of Life-Sustaining Treatments" (Vaughn 348-353), and Thomas Mappes' "Some Reflections on Advance Directives" (Vaughn 363-370). And Jeffrey Swanson's "Superseding Psychiatric Advance Directives: Ethical and Legal Considerations" is useful for highlighting the differences between physical and psychiatric advance directives. After viewing the film and discussing the supplemental readings, students work with a partner on completing their own PADs together: each student takes turns, asking the questions and filling out the form for the other student's PAD. The forms for New York State, where I teach, are available online (New York Association of Psychiatric Rehabilitation Services) and forms for many other states are also available through the National Resource Center on Psychiatric Advance Directives (http://www.nrc-pad.org).
For instructors and students with psychiatric disabilities, especially those who may have experienced or who have been threatened with involuntary commitment, this exercise might be distressing, and there are important privacy issues that one must attend to in this assignment. The New York form, for example, asks about past treatments and past experiences with physicians: "In the past, I have found that the following actions make me feel worse. I prefer that staff not do the following" and "I do not wish to be treated by the following physicians, if possible, for the reasons stated." Although questions like these are designed to empower the person filling out the form, these questions also compel the person to recall experiences that may have been traumatizing. And these questions would quite obviously violate a person's right to privacy if they are filled out publicly, or in the classroom. So this is an assignment that requires planning and judicious editing. While I believe it is important for students to read the entire PAD form, asking them to answer only a selected question or two from the form in class prevents the exercise from becoming tedious and avoids violating students' privacy (as long as one chooses the correct questions). Giving students the option to answer the questions from the perspective of Richard Delany as they imagine him is another way to address the issue of student privacy. And there are ways an instructor can alter the assignment that will change how students interact with the form. For example, instead of having all of the students work in pairs, two students can volunteer to work through the form once in front of the whole class, or a student can interview the instructor as the whole class watches and comments. Or an instructor may choose to have a discussion about the form rather than actually filling out any portions of it during class. How to introduce this material and perform this exercise in class in a way that does not harm anyone is an issue that is context-based and requires careful consideration by the instructor.4
This assignment gives students the opportunity to re-enact and re-envision particular scenes from the film using actual PAD forms. This activity, however, is not simply about filling out forms—it is also about critiquing the forms themselves, reflecting on what they include, what is absent, examining the level of competency that the forms require, and theorizing about competency as a fluid category.
Assignment #3: Right to Refuse Treatment: The Family Crisis Case
This is a version of a take-home exam that I have used as a final in one of my bioethics courses. The structure of the prompt mimics the case study examples in bioethics textbooks, but with the exception that it places the student in the role of a family member, rather than an objective observer.
By the time students encounter this assignment, they are well versed in issues of autonomy and competency, and they have read other cases about the right to refuse treatment, including a recent case in which a court supported a woman with schizophrenia's right to refuse surgery to remove a gangrenous leg (Edgar). They are also familiar with the case of Joyce Patricia Brown (also known as Billie Boggs), who, with help from the ACLU, successfully battled Mayor Koch for her right to remain homeless on the streets of New York in the late 1980s. They are familiar with Kendra's Law, the New York State involuntary outpatient commitment program. They have also viewed TED talks by Elyn Saks and Eleanor Longden, who both have very different takes on the experience of psychosis. In the extended instructions accompanying this prompt, students are strongly encouraged to make connections to this previous course material.
Prompt: Your 21-year old sister has been diagnosed with paranoid schizophrenia, and has a history of drinking and drug use. She has no insight into her illness (she does not believe that she has a mental illness). She has refused treatment for her psychiatric symptoms, and she has refused drug rehabilitation treatment. Although she has been missing from home for over a year, a friend of yours reports seeing her sleeping on a hot-air vent grate in the city. It's winter, and bitterly cold, around 20° F. Your parents are extremely upset and beg you to go look for her. Your grandmother is so anxious that you are afraid her health is declining from this stress. When you find your sister and confront her, she is very thin, dirty, and disheveled, but otherwise seems in good bodily health. She says that she is fine, but she does not want to go home with you, and she does not want to go to a shelter. She reminds you that she is an adult and can do as she pleases. God, furthermore, has told her to stand guard over this neighborhood. If she leaves, thousands will die and it will be her fault. While you are talking with her, a man approaches her and gives her a hot meal. She has always been a very kind and gentle person, and some people in the neighborhood seem to like her and take care of her, while others seem irritated and disgusted by her presence. What do you do? Does your sister have the right to exercise her autonomy and choose the life she wants to live? Why or why not? Should people with mental illnesses be forced to undergo treatment and medication in some circumstances? What other cases or precedents does the textbook discuss that are applicable to this situation? How do you explain the situation and your views to your elderly and distressed grandmother?
This prompt admittedly makes some rather heavy-handed appeals to a student's sense of empathy—the sister in the cold, the frail grandmother—yet this is by design. And it is interesting to see the ways in which students navigate through the theoretical and the personal: some are convinced they could persuade their sister to come home with them, and some lie to the grandmother (even though they admit lying is wrong). Other students try to evade the subjective nature of the prompt by answering in the third person. And many students come to the difficult conclusion that they must leave their sister on the streets.
Assignment 4: Stigma, Violence, and Schizophrenia
This assignment is designed to counter or challenge the common association of mental illness, particularly schizophrenia, with violence, and it is easily adaptable to a literature or introductory disability studies course. I begin by giving the class a sheet of paper for silent brainstorming: one half receives a sheet with the word "psycho"; the other half, a sheet with the word "schizophrenia." After spending a couple of minutes writing down words they associate with that term, I ask several to come up and share their results on the board: one half of the board devoted to each term, side-by-side. As a class we trace commonalities and distinctions between the two lists. For a bioethics course, this is a prime opportunity to get students to start thinking about the connections between medical language and discrimination against people with disabilities. At this point, students view two supplementary online videos: "After Psychosis," which consists of first-person accounts of people who are diagnosed with schizophrenia who have made it through episodes of psychosis and who have compelling insights into maintaining their health; and "Schizo," a short anti-stigma public service announcement (PSA) starring Glenn Close's nephew Calen, who is "living with schizophrenia." The PSA's introduction is notable for its ironic yet convincing imitation of how films conventionally link dangerousness with mental illness. Both videos are interventions designed to combat stigma, and we discuss the way mental illness is scripted in these videos and in our cultural imagination.
I then assign as a primary text one of the fictional accounts described below (Clean, Shaven or Echoes) or the documentary, People Say I'm Crazy, along with a changing combination of secondary texts by DuBrul, Metzl, Muller, North, and Price, depending on the narrower topic I wish to emphasize (neurodiversity or violence/mental illness). The final project can be a class discussion, a written exam, or a more formal paper. Of the primary fictional texts, Clean, Shaven is a brilliant film about Peter, a man with schizophrenia, just released from a mental hospital and trying to reunite with his daughter, who has been adopted into a new family. Simultaneously a series of child murders occurs, and Peter's psychotic symptoms come back in full force. Peter becomes a key suspect and his own delusions reinforce the suspicions of the detective investigating the murders. The other fictional text, Echoes, is a graphic novel that also plays with the association of violence and mental illness. The main character has been diagnosed with schizophrenia and takes medication, but his father's deathbed confession leads him to believe that he is involved in a series of child murders. This story is very much in the same vein as Clean, Shaven, and similarly takes advantage of and then upends readers' association of mental illness with violence, while also acknowledging the devastating effects of delusional thinking that some people can experience during psychotic episodes.
The remaining primary text is one that I prefer for this assignment. People Say I'm Crazy, is a truly remarkable film: shot, directed, and narrated by John Cadigan, an artist diagnosed with schizophrenia (with some occasional footage of him shot by others while he is incapacitated by illness). The film briefly documents Cadigan's history of unsuccessful treatments, including ECT, until his remarkable transformation with the anti-psychotic clozapine, which also triggers a 100-pound weight gain. John Cadigan is sweet, funny, smart, and talented. As he whimsically mock narrates a tour through his boarding home, he states: "This is the 'frigerator. Many times I store soda in here for beverage purposes." He is also especially insightful about the effect his illness has had on his family: "My illness brought everyone together." This film records Cadigan's rich support system of family and friends (many with mental illnesses themselves), his continuing struggle with his anxieties (not feeling safe at his boarding house and feeling fearful and paranoid about his family), and his successes and public accolades as an artist working in woodcutting. In one particularly poignant moment, he shows his sister cuts he has made on his own arm. And he admits to skipping a few days of his medications and of imagining violent acts against his family. In this scene, the fear the audience experiences for Cadigan (his potential to harm himself) might exist alongside a fear of Cadigan (his potential to harm others). Yet this is a story about Cadigan's successes, both large and small, from advocating for disability housing at a televised town council meeting to making his first cup of coffee in his new, private apartment.
Depending on the course objectives and the class, an instructor can focus this assignment on ways of re-imagining mental illness positively as neurodiversity or on decoupling the association of violence and schizophrenia. To focus on neurodiversity, one can use Cadigan's documentary together with Sascha DuBrul's "The Icarus Project: A Counter Narrative for Psychic Diversity" and Robert Muller's "My Name Is Not Schizophrenia: Removing the Label." To focus on the relationship between violence and mental illness, one can use either Clean, Shaven or Echoes, along with Jonathan Metzl's "Let's Talk About Guns, But Stop Stereotyping the Mentally Ill," Anna North's "Can Psychiatrists Stop Gun Violence?," or chapter 4 of Margaret Price's Mad at School, "Assaults on the Ivory Tower: Representations of Madness in the Discourse of US School Shootings." In either case, students should be prompted to articulate the ways in which the primary texts manipulate or challenge the stigma associated with mental illness and the ways in which pathologizing language can undermine the dignity of people with diverse neurological states. For students who are planning to enter a health care profession, this is an exercise that can potentially help make future clinical encounters more humane.
Conclusion: Abilify is an Antipsychotic
In the final chapter of her autobiography, Elyn Saks contrasts the long list of famous, creative people with mood disorders, such as depression and manic depression, with the short list of people with schizophrenia, or "thought disorders": "people with thought disorders do not keep a list of famous and successful people who share their problem. They can't, because there is no such list. Comparatively few schizophrenics lead happy and productive lives; those who do aren't in any hurry to tell the world about themselves" (329; emphasis in original). Perhaps Saks overstates the case, but it is certainly true that people with schizophrenia are in many ways relatively invisible.
For example, anyone who watches television or opens a magazine in the U.S. can see many direct-to-consumer (DTC) advertisements that appeal to the patient diagnosed with depression. And even antipsychotic medication, such as Abilify, is now heavily DTC marketed. However, it is worth noting that Abilify is never explicitly identified as an antipsychotic in these advertisements; it is merely an adjunctive medication that viewers are encouraged to ask their doctor about if their depressive symptoms are not being adequately treated.5 Psychosis is the condition that dare not speak its name. As Edward Shorter argues in How Everyone Became Depressed, the experiences of depression, dysthymia, and manic depression have become more visible and even more normalized. Yet, the potential psychotic features of those conditions and others are rarely discussed. Where are the advertisements that appeal directly to consumers diagnosed with schizophrenia? I don't want to argue that these types of pharmaceutical ads should exist, but I do want to note here the significance of their absence.
As Catherine Prendergast has said, "To be disabled mentally is to be disabled rhetorically" ("On the Rhetorics of Mental Disability" 202).6 This is certainly true, and the problem runs even deeper than a failure to be acknowledged as a speaker. The failure to address a subject with psychosis helps to render that experience invisible. In important ways the experience of psychosis remains unintelligible if it is not hailed into being, or interpellated. 7 While there are inherent dangers in being hailed as a psychotic subject, there are also opportunities for meaningful engagement and emancipatory interventions within disability studies scholarship, teaching, and activism.
- "After Psychosis: Parts 1 and 2." British Columbia Schizophrenia Society. May 2008. Retrieved: 30 December 2014. https://youtu.be/CtcK_Wx4snc?list=FLsTOn5QaGQxwpiKU_l0UJOg and https://www.youtube.com/watch?v=BWK3-E-Nqas Web.
- Andreasen, Nancy C. "Beautiful Minds: An Interview with John Nash and Son." Discovery Channel. Circa 2010. Retrieved 30 December 2014. https://www.youtube.com/watch?v=SizS1nOOeJg Web.
- Asch, Adrienne. "Disability, Bioethics, and Human Rights." Handbook of Disability Studies. Eds. Gary L. Albrecht, Katherine D. Seelman, and Michael Bury. Thousand Oaks, CA: Sage, 2003. 297-326. Print.
- Beauchamp, Tom L. and James F. Childress. Principles of Biomedical Ethics. 5th ed. New York: Oxford UP, 2001. Print.
- Clean, Shaven. Dir. Lodge Kerrigan. DSM III Films, 1994. Criterion, 2006. DVD.
- DeGrazia, David, Thomas A. Mappes, and Jeffrey Brand-Ballard. Biomedical Ethics. 7th ed. New York: McGraw Hill, 2011. Print.
- Donaldson, Elizabeth J. "The Psychiatric Gaze: Deviance and Disability in Film." Atenea, special issue on "The Discourse of Disability," 25.1 (June 2005): 31-48. Print.
- Dreger, Alice D. "When HIPAA Hurts." The Bioethics Forum. 5 September 2007. Retrieved: 30 December 2014. Web.
- DuBrul, Sascha Altman. "The Icarus Project: A Counter Narrative for Psychic Diversity." Journal of Medical Humanities 35 (2014): 257-271. Print.
- Echoes. Joshua Hale Fialkov, writer. Rahsan Ekedal, illustrator. Los Angeles, CA: Top Cow, 2011. Print.
- Edgar, James. "Schizophrenic with a Gangrenous Leg Allowed to Refuse Amputation." The Telegraph. 21 Feb. 2014. Retrieved: 30 December 2014. http://www.telegraph.co.uk/news/uknews/law-and-order/10653650/Schizophrenic-with-a-gangrenous-leg-allowed-to-refuse-amputation.html Web.
- "Eleanor Longden: The Voices in My Head." TED. Feb. 2013. Retrieved: 30 December 2014. http://www.ted.com/talks/eleanor_longden_the_voices_in_my_head.html
- "Elyn Saks: A Tale of Mental Illness—From the Inside." TED. June 2012. Retrieved: 30 December 2014. https://www.ted.com/talks/elyn_saks_seeing_mental_illness Web.
- Hawkes, Erin L. When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia. Dundas, ON: Bridgeross, 2012. Print.
- Jones, Nev and Robyn Lewis Brown. "The Absence of Psychiatric C/S/X Perspectives In Academic Discourse: Consequences and Implications." Disability Studies Quarterly 33.1 (2014). http://dsq-sds.org/article/view/3433/3198 Web.
- Martin, Emily. Bipolar Expeditions: Mania and Depression in American Culture. Princeton: Princeton UP, 2007. Print.
- McLean, Richard. Recovered, Not Cured: A Journey Through Schizophrenia. Crows Nest, Australia: Allen and Unwin, 2003. Print.
- Metzl, Jonathan. "Let's Talk About Guns, But Stop Stereotyping the Mentally Ill." Melissa Harris-Perry: MSNBC. 13 Sept. 2013. Retrieved: 3 January 2015. http://www.msnbc.com/melissa-harris-perry/lets-talk-about-guns-stop-stereotyping Web.
- Morgan, Kristina. Mind Without a Home: A Memoir of Schizophrenia. Center City, MN: Hazelden, 2013. Print.
- Muller, Robert T. "My Name Is Not Schizophrenia: Removing the Label." Psychology Today. 14 Feb. 2014. Retrieved: 30 December 2014. http://www.psychologytoday.com/blog/talking-about-trauma/201402/my-name-is-not-schizophrenia-removing-the-label-1 Web.
- Nasar, Sylvia. Personal communication. 21 April 2006.
- New York Association of Psychiatric Rehabilitation Services. "Planning for Your Mental and Physical Health Care and Treatment." The Advance Directive Provider Training Project. National Resource Center on Psychiatric Advance Directives. 2013. http://www.nrc-pad.org/images/stories/PDFs/nyprs%20pad%20booklet%20form%20and%20card-1.pdf Web.
- North, Anna. "Can Psychiatrists Stop Gun Violence?" The New York Times. 16 December 2014. Retrieved: 30 December 2014. http://op-talk.blogs.nytimes.com/2014/12/16/can-psychiatrists-stop-gun-violence/?_r=0 Web.
- Oaks, David. "The Moral Imperative for Dialogue with Organizations of Survivors of Coerced Psychiatric Human Rights Violations." Chapter 12 in Coercive Treatment in Psychiatry: Clinical, Legal and Ethical Aspects. Eds. Thomas W. Kallert, Juan E. Mezzich, and John Monahan. Wiley, 2011. http://www.mindfreedom.org/who-we-are/david-w-oaks/writing Web.
- Out of the Shadow. Susan Smiley, dir. Los Angeles, CA: Vine Street Pictures, 2006. DVD.
- Payne, Roberta. Speaking to My Madness: How I Searched for Myself in Schizophrenia. North Charleston, SC: CreateSpace, 2013. Print.
- People Say I'm Crazy. John Cadigan, dir. Palo Alto Pictures, 2004. DVD.
- Prendergast, Catherine. "Mental Disability and Rhetoricity Retold: The Memoir on Drugs." Changing Social Attitudes Toward Disability: Perspectives from Historical, Cultural, and Educational Studies. Ed. David Bolt. New York: Routledge, 2014. 60-67. Print.
- —-. "On the Rhetorics of Mental Disability." Embodied Rhetorics: Disability in Language and Culture. Eds. James C. Wilson and Cynthia Lewiecki-Wilson. Carbondale, IL: Southern Illinois UP, 2001. 45-60. Print.
- Price, Margaret. Mad at School: Rhetorics of Mental Disability and Academic Life. Ann Arbor: U of Michigan P, 2011. Print.
- Rosenthal, Elizabeth. "Medical Records: Top Secret." The New York Times. 8 Nov. 2014. Retrieved: 30 December 2014. Web.
- Saks, Elyn. The Center Cannot Hold: My Journey Through Madness. New York: Hyperion, 2007. Print.
- "Schizo." Bring Change 2 Mind. 14 May 2013. Retrieved: 30 December 2014. Web.
- Schneider, P.L. and K.A. Bramstedt. "When Psychiatry and Bioethics Disagree about Patient Decision Making Capacity (DMC)." Journal of Medical Ethics 32 (2006): 90-93. Print.
- Shorter, Edward. How Everyone Became Depressed: The Rise and Fall of the Nervous Breakdown. New York: Oxford UP, 2013. Print.
- Simplican, Stacy Clifford. "Care, Disability, and Violence: Theorizing Complex Dependency in Eva Kittay and Judith Butler." Hypatia 30.1 (Winter 2015): 217-233. Print.
- Steele, Ken, and Claire Berman. The Day the Voices Stopped: A Memoir of Madness and Hope. New York: Basic Books, 2001. Print.
- Swanson, Jeffrey W., et al. "Superseding Psychiatric Advance Directives: Ethical and Legal Considerations." Journal of the American Academy of Psychiatry and the Law 34.3 (September 2006): 385-394. Print.
- Unlisted: A Story of Schizophrenia. Dir. Delany Ruston. MyDOC Productions, 2010. DVD.
- Vaughn, Lewis. Bioethics: Principles, Issues, and Cases. 2nd ed. New York: Oxford UP, 2013. Print.
- Wallace, Mike. "Interview with John Nash." 60 Minutes. Circa 2002. Retrieved 30 Dec. 2014. https://www.youtube.com/watch?v=kEArD9HDj3I Web.
- When Medicine Got it Wrong. Dirs. Katie Cadigan and Laura Murray. Documentary Educational Resources, 2010. DVD.
Full-length documentaries include Out of the Shadow, People Say I'm Crazy, Unlisted, and When Medicine Got it Wrong; see also the TED Talks, "Eleanor Longden: The Voices in My Head" and "Elyn Saks: A Tale of Mental Illness—From the Inside."
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See, for example, Jones and Brown on the absence of consumer/survivor/ex-patient perspectives in academic discourse.
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I have had to leave the classroom during some scenes in this film, because they are simply too close to my own experiences and are re-traumatizing.
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For an extended and more informed discussion of inclusion in the classroom, see Margaret Price's Mad at School.
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Emily Martin briefly discusses the lack of schizophrenia advertisements to consumers in Chapter 6 of Bipolar Expeditions.
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Prendergast has recently qualified this statement, mainly because of writers like Elyn Saks (see "Mental Disability and Rhetoricity Retold").
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This is a subject I have previously written about (see Donaldson, "The Psychiatric Gaze" 43-45) and a point that Price also makes in Mad at School (27).
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