In My Head

The experience of breakthrough

 Do you hear or see things others do not hear or see?
  • Pick one:
  • Not at all
  • Just a little
  • Quite a lot
  • All the time

How can you rationalize yourself out of a hallucination when your brain is processing it as if it were real as feeling and seeing the sun? In psychosis, no event or thing is small enough to escape the tightly woven net of personal significance. A clock means a bomb, a sunset is a message, and so on. But how do you live in a world in which everything signifies? How do others who live in this shimmering, terrifying world treat you?

How is a person supposed to live with this knowledge?


As soon as the doctor even mentioned schizophrenia, I leaned into the frightening word. I allowed it to stand in for the uncanny sensation of experiencing complex constellations of thought disturbances and associations. No one dared questioned my claim to crazy when I invoked the magic word. Meanwhile, I know others who cared about me must have prayed against it, as if a less terrifying name would counteract the transubstantiation kind of realness of the disorder and bring back whoever I had once been.


Do you ever feel like you’re “going crazy”?
  • Pick one:
  • Not at all
  • Just a little
  • Quite a lot
  • All the time

What is crazy? In practice, madness is defined functionally rather than with reference to some absolute cognitive distinction. You can be as sad as you like if you still make your rent. You can be convinced that every streetlight is an angel as long as you walk past them and to your own door. If you have a lot of money, you can go on being crazy without consequence for longer than if you had only a little. Despite all these gradations, it is not as if there are two kinds of things, really real things and merely socially constructed things: the conditions of reality are socially determined, and crazy is one of the names for a life that falls outside value.


Do you ever think you hear people talking about you behind your back?
  • Pick one:
  • Not at all
  • Just a little
  • Quite a lot
  • All the time

The schizophrenic individual is a unique figure. The word implies something split or broken and lends itself to fantasies of people with schizophrenia as multiple with dislocated selves. Medically, however, schizophrenia is a knotted accumulation of symptoms hinging on language, comprehension, and connection: hallucinations, delusions, and cognitive dysfunction. For Gilles Deleuze and Felix Guattari, it stands for both a reaction to present brokenness and some possible future orientation to the world that will result in new ways of living. They interpret crazy as a process, not a pathology, that allows for a possible future orientation to the world, where different forms of meaning will be allowed to disperse freely. The term schizo-culture is not meant to refer to the actual disease, which renders people unglamorously confused and incapable of basic self-care, but to the alluring possibility of remixing and transforming the ways we relate to each other.

They have worked extensively to re-think subjectivity and re-conceive schizophrenia as a process of change rather than as a medical condition and I—stubbornly, untheoretically— dislike its use as an image, even when well meaning. The idea of schizophrenia as an extreme materialization of the pain in our present social form is hard to accept because it’s also the name for a real experience. 

I am skeptical of the metaphor. When everyone identifies as metaphorically mad, the concept becomes meaningless. Furthermore, not every materialization of societal suffering is an illuminating metaphor. Too often, our conversations about mental illness focus on its most spectacular manifestations. The main diagnostic for mental illness is suffering. In some instances, madness may mitigate suffering, allowing for an ignorant withdraw into a private realm of significations, free from responsibility and insight. However, most forms of suffering are neither poetic nor dramatic. The daily experience of madness or crazy is often boring, lonely, and fraught with self-hatred.


Do you think you can predict what will happen in the future?
  • Pick one:
  • Not at all
  • Just a little
  • Quite a lot
  • All the time

What is crazy? The world is a bucket made of plastic and the water inside the bucket is all the confidence, power, joy, and possibility in the world, but there are holes in the bucket: each wounding experience, instance of stigma, and structural injustice is its own hole. We all carry around our own buckets, but for those with mental illness, the bucket has cracks—and it’s only a matter of time before it breaks and all the water of possible joy spills out everywhere and you are left with a pieces of plastic that once held everything. That is crazy!

People with schizophrenia need help and support to overcome the isolation and disability associated with the illness. We all need to become less averse to feeling uncomfortable. We need to be more resilient. Crazy people have the same capacity for love, empathy, perception, compassion, and suffering as sane people do. But as long as crazy is nothing and means nothing—I mean until we begin the abolition of intolerable conditions—then the crazy will go on bearing the burden of meaning.

 

A Letter to a Disorder

You incapacitated me and brought waves of pain rushing through my body until I thought my skin would tear from the pressure that built inside me. My throat contracted and burned, the back of head throbbed, my eyes stung. You filled me up with searing heat and insidious thoughts. You made me say terrible things to the people I love. I lashed out at people who didn’t deserve it. You made me run people out of my life and I lost friends I didn’t think I could. You made me irritable and mean, an ugliness that left me feeling fundamentally unknowable. You slipped into the empty spaces between my words, making wounds that were deeper and hurt more than anything I could make on my body. You, an assassin, destroyed everything and the end result was so painful that it seemed to change the size and relative gravity of the objects around me.

Everything always fell apart when you’d appear. Bad stuff happened to my family and friends and even strangers in blindingly fast succession. I became unhinged, devalued, isolated and alone, cultivating toxic theories, and barely floating. I didn’t see gray. I was fearful at times, reckless at others, descending and ascending mood mountains, equally parts irritable and overjoyed in an hour. And always hurt. The default condition.

You drained me and brought me to a blank state. The fatigue I stored inside me was so heavy, I couldn’t leave my bed. I breathed depression into my lungs, growing it and cultivating it. I made it mine so that even when I started to heal, I remained cratered at the center of myself. I sat alone at home convinced no one would ever want to be there sitting next to me.

You made me vulnerable to every little slight, awkward glance, forgotten message. But this sensitivity to feeling also came with a heightened capacity to feel the emotions of others with my own. You made me more in tune with the feelings of others and I came to appreciate and cherish others more. It wasn’t your intention, but you made me a better friend and taught me how to help people better. You taught me lessons about myself that I can teach to others, and you taught me a loneliness that I don’t want others to ever feel. I’ve isolated myself from a lot of people, but I’m in the process of drawing nearer again. My survival was not tied to the fact of any particular person continuing to love me. I have found my power from you in small but significant things, and important but unexpected people. I will get better at living with you and managing you.

The Minority Body

Philosopher Elizabeth Barnes proposes a value-neutral model of disability

Barnes, Elizabeth. The Minority Body: A Theory of Disability. New York: Oxford University Press, 2016.


“It’s easy to confuse the view from normal with the view from nowhere. And then it’s uniquely the minority voices which we single out as biased or lacking objectivity” (p. ix).

Philosopher Elizabeth Barnes begins her book with a personal and perhaps, defiant acknowledgement: “This book is personal…I’m disabled, and this book is about disability. Of course it’s personal” (p. ix).  However, it can also be claimed that philosophy of disability is personal for everyone because non-disabled people are just as emotionally invested in being non-disabled. Thus, the view from normal is never the view from nowhere.

In The Minority Body, Barnes’s central question concerns the connection between disability (physical, she does not talk about intellectual or psychiatric disability) and well-being. As an analytic philosopher, Barnes describes frustration at the explicitly normative and negative prevailing characterization of disability within her discipline. The characterization of disability in both academic philosophy and contemporary society views disability in terms of loss, tragedy, and misfortune. In response, Barnes develops an alternative understanding of disability to compete with the prevailing disability as always sub-optimal ideology. Her model is based on understanding disability as a social identity that exists as a state of difference, not defect. She describes the experience of being disabled as having a minority body: a body that is different but not intrinsically worse in any way.

In Chapter One: “Constructing Disability,” Barnes begins with conceptual questions about what disability is and seeks to develop a unifying account of disability that meets the following criteria: (i) it delivers correct verdicts for paradigm cases, (ii) it doesn’t prejudice normative issues, (iii) it’s unifying and explanatory, and Iiv) it’s not circular (pp. 10-13). She chooses to exclusively focus on physical disability and offers no promises that her model will be applicable to cases of psychiatric disability or cognitive disability. She surveys (and rejects) biological, naturalistic accounts of disability that attempt to locate disability as an inherent feature of individual bodies, dismissing the idea that disabilities are natural kinds (p. 23). She next looks to models of disability based on social constructionism and outright dismisses a purely social model of disability as being overly disembodied as well as maintaining an unclear distinction/difference between impairment and disability.  She maintains that social constructionist accounts of disability have “gone too far” in removing the body entirely from accounts of disability. According to Barnes, it is entirely permissible to assert something is socially constructed and objectively real. In other words, social construction and the objective features that are emblematic of what disabled bodies are like are not mutually exclusive. As a result, she offers a “moderate social constructionism” model of disability “that says that disability is socially constructed, but which places greater importance on objective features of bodies (rather than how bodies are perceived or treated)” (p. 38). She writes, “Being disabled is not merely a matter of what your body is like, but we can still allow that it is partly a matter of what your body is like” (p. 37). In this model, disability is a property of bodies, but it’s a socially constructed property of bodies. She argues that this moderate social constructionist view can make sense of both the objective realities of disabled bodies and how those bodies are viewed socially. Lastly, she argues that an account of disability must be informed by the disability rights movement, who she argues didn’t just influence the category of disability, but created it. According to Barnes, disability activists are best positioned to determine what bodies should be considered disabled due to their unique first-hand knowledge of the experience of disability. As a result, she advances a moderate social constructionist account of disability that arises from and is mediated by social solidarity. Her contention is that what disability is are those things that the disability rights movement is promoting justice for (p. 43).  On this account, disability is a “rule-based solidarity among people with certain kinds of bodies” (p. 46).

In Chapter Two: “Bad-Difference and Mere-Difference” and Chapter Three: “The Value-Neutral Model,” Barnes further refines her characterization of disability in contrast to the contention that disability is something that by itself intrinsically makes a person worse off. She distinguishes between bad-difference and mere-difference views of disability and argues that many non-disabled people, including many philosophers, take some version of the bad-difference view as just common sense. Bad-difference views of disability claim that, even in a society free from ableism, there will still be “a negative connection between disability and well-being” (p. 71). Barnes points to the vast amount of evidence suggesting that non-disabled people tend to assume incorrectly how disability affects the perceived well-being of disabled individuals, arguing that non-disabled people tend “to systematically overstate the bad effects of disability on perceived well-being and happiness” (p. 71). She makes the claim that rather than bad-difference,  disability  is an example of “mere difference,” not intrinsically negative or positive with respect to well-being.  Disability is something that absolutely that makes you different in the way that gender identity, sexual orientation, and race make you different, but it is not disadvantage and “there’s no essential link between disability, disadvantage, or stigma” (p. 51). Barnes argues for a value-neutral version of the mere difference view of disability premised on the idea that disability by itself does not have any intrinsic connection to well-being. She argues that this value-neutral model provides a more nuanced view of disability that’s missing in other theories. Ultimately, what makes disability a net positive or net negative in particular cases is determined not by the mere presence of disability, but by how disability combines with other intrinsic and extrinsic circumstances of a person’s life. Critically, the mere-difference view allows for disability to adversely affect a local person’s well-being, but not a person’s overall quality of life. Barnes distinguishes between local bads and global bads to make this point:

some things are bad [or good] for you on the whole or all things considered. Other things are bad [or good] for you with respect to certain aspects of your life or with respect to certain times (p. 80).

She argues that most of the bad things disabilities people associate with their disabilities constitute local bads and do not affect the overall value of a person’s life (i.e., they are not globally bad). She believes that philosophers (and many others) have a tendency to collapse local into global bads which leads to their contention that disability is “bad simpliciter” (p. 84). Instead, she argues that:

Disability is a neutral simpliciter. It can sometimes be bad for you—depending on what (intrinsic or extrinsic) factors it is combined with. But it can also, in different combinations, be good for you. And all of that is compatible with disability sometimes—perhaps always—being locally bad for you (that is, bad for you with respect to particular things or particular times) (p. 88).

It’s important to recognize that this view of disability is consistent with disability being a harm in a restricted sense (with respect to some time and some feature) and with disability on the whole being bad for some people, depending on what it’s combined with. It is also consistent with disability being something that makes some people’s lives go better.

In Chapter Four: “Taking Their Word For It,” Barnes bolsters her value-neutral model disability with the first-person testimony of disabled individuals. The testimony she presents from disabled activists clearly demonstrates their experience of well-being to be on par with that of non-disabled individuals.  According to the testimony of a number of disability activists, disability is not a private tragedy, but a “complex, multifaceted experience” that can be valuable and associated with a positive experience of well-being. Nevertheless, it remains a dominant belief among philosophers and mainstream bioethicists that disabled people have a much lower level of well-being than non-disabled people and even when confronted with evidence to the contrary, they do not change their views, but instead write them off as unreliable or uninformed. The dismissals of these first-person experiences are an example of “testimonial injustice” following philosopher Miranda Fricker (p. 120). Testimonial injustice occurs when “a speaker is not believed or given due credence (where others would be) specifically because they are a member of a group that is the subject of stigma” (p. 135). In doing so, a person engages in “identity prejudice” in that they judge someone to be the kind of person who is unreliable.

Barnes argues that the testimony of disabled individuals is often dismissed with appeals to adaptive preference. According to the model popularized by Amartya Sen and Martha Nussbaum, preferences are adaptive when they are formed toward something sub-optimal as a result of a constraint on options. Barnes writes: “We are saying, in effect, that the non-disabled—the majority—are in a better position than the disabled—the minority—to evaluate disabled people’s well-being” (p. 133). This is a serious claim and one with an “unhappy history” (p. 133). The problem with the adaptive preference model is that it allows us to discount some testimony as irrational or misleading and can quickly become a tool to maintain the status quo.

In Chapter Five: “Causing Disability,” Barnes addresses causation-based objections that typically arise from a neutral or positive valuing of disability. Philosopher critics have objected that a mere-difference view of disability licenses the permissibility of causing disability and the impermissibility of removing disability. Barnes argues that this philosophical claim that disability is bad-difference rests on intuition and is highly suspect especially “when it contravenes the testimony of many members of that disadvantaged group” (p. 72). This brings up important points regarding so-called “common sense” intuitions about disability advanced by non-disabled “experts.” Barnes argues that contrary to “common sense” views of disability, it is actually very difficult to put flesh on the bones of the argument that disability makes a person worse off. It is much less obvious to make the claim that disability is still tightly correlated with negative experience even in the absence of ableism.

Finally, Chapter Six: “Disability Pride,” Barnes argues for the importance of disability pride movements. The disability rights movement is a civil rights movement on par with gay rights, women’s rights, and racial liberation movements. She articulates the disability pride as “the politically motivated celebration of difference” (p. 181). In an ableist society that endorses negative stereotypes and stigma about disability, it can become easy to feel as though disability is a private tragedy. She argues that disability pride makes emotional room to celebrate disability as a contributing factor to human flourishing, but that these movements are also epistemic: “ pride movements also affect what we can know” (p. 183).

Barnes introduces Fricker’s concept of hermeneutical injustice. Barnes summarizes the idea:

In cases of hermeneutical injustice, we harm people by obscuring aspects of their own experience. Our dominant schemas—our assumptions, what we take as common ground—about a particular group can make it difficult for members of that group to understand or articulate their own experiences qua members of that group (p. 169).

Hermeneutical injustice describes the phenomenon where an individual finds it hard to know or articulate things about themselves and their own social experience due to prejudices and stereotypes about the kind of person that they are. Disabled people experience hermeneutical injustice, insofar as they are forced to try and understand and articulate their experiences using the dominant conceptual tools which are often disability-negative. In other words, this injustice occurred in the context where disability was conceptualized and understood not by the lived experiences of disabled individuals but a privileged hegemonic understanding of what disability is. This understanding by a non-disabled, majority group then influences dominant norms and schemas about disability which make it difficult for disabled people to understand and articulate their own experiences.


Thoughts

  • I’m inspired by Barnes expressing her infuriation with academic philosophy and it’s understanding of disability.
  • All of the testimony Barnes presents to bolster her argument comes from disability activists and not the general disabled population. All of these activists claim value in their disability. Yet Barnes also clarifies at many points in the book that there are many disabled people who do not describe their disability as a positive experience and would prefer not to be disabled. It seems like like a strange flaw then that she would prefer to ignore these testimonies or those from the general disabled public. It makes me wonder whose testimony counts?
  • The majority of her examples seem to showcase disability through paradigms such as blindness, deafness, and mobility impairments. I am curious about how testimony might change for someone with chronic fatigue syndrome or a painful physical condition.
  • Barnes contrasts disability with cancer, claiming that there is no value in having cancer whereas there is for some disabled people who find value in their disability. So, disabilities are not cancer. But is this right? Might someone not find value in their cancer in the way they do with disabilities? Or what about people with Munchausen syndrome?
  • Many disability scholars make it a point to note that the majority of individuals will experience disability at some point in their lives. This seems to make it distinct from other minority identities like being gay or being a woman.
  • Barnes says that first person testimony doesn’t have to be upheld as sacrosanct, but in my personal experience “compromising” normally means silencing the already oppressed parts of myself.  When you are up against an oppressor who willfully wants to deny your humanity, the moment you begin to accept compromise, you are most vulnerable to epistemic violence.
  • Despite Barnes’ explicit acknowledgement of her wish to focus exclusively on physical disability, I wonder if this choice reinforces a hierarchy or ideology within the disability community.

 

Why Bioethics Needs a Disability Moral Psychology

Notes on an article by Joseph Stramondo.

Stramondo, Joseph. “Why Bioethics Needs a Disability Moral Psychology.” Hastings Center Report 46, no. 3 (2016): 22-30.


In this essay, philosopher Joseph Stramondo argues that the long-stranding acrimonious conflict between the disability movement (DM)—“the coordinated, large-scale, sustained social and political action of disabled people in the United States” (p. 23)—and the field of bioethics is best explained by difference in moral psychology between disabled and nondisabled people. Disability scholars and advocates have long been critical of what they consider an eliminatory mindset in bioethics with regards to disability, particularly on the topics of prenatal diagnosis and selective abortion. However, the rift between the two groups seems to have grown wider with moral clashes on issues pertaining to health care rationing, grow-attenuation interventions, human enhancement, physician assisted suicide, and euthanasia. According to Stramondo, variations in moral psychology between disabled and nondisabled people are at the heart of the well-recognized conflict between the DM and mainstream bioethics. He contends that these variations in moral reasoning and perception are produced by the lived experience of disability. Stramondo argues that mainstream bioethics must adopt the “ambitious task of identifying and bridging this underlying divide in moral psychology” by first asking the question: “do disabled people sometimes perceive and reason about moral problems in ways that are foreign to mainstream bioethics?” (p. 24).

Disability Experiences as Sources of Ideology, Values, and Norms?

Stramondo looks to the work of the late Paul Longmore for an alternative ethics originating from the lived experience of disability. Longmore’s example is based on a reframing from basic social values in mainstream bioethics to values that originate from a disabled individual’s point of view. This point of view, he argues, is constituted from the collective social disability movement. While Longmore provides a good starting point, Stramondo ultimately argues that the conflict between the DM and mainstream bioethics cannot be framed in terms of variations in political ideology (e.g., social model vs. medical model) because “although the conflict between the disability movement and mainstream bioethics may often be expressed through the ideological divide that these scholars have identified, it does not originate with that divide and cannot be resolved at that level of analysis” (p. 24). The lived experience of disability that produce variations in moral psychology which embodies “how human beings perceive and reason about moral problems” (p. 22) exist prior to expressions to the political ideologies of the DM and mainstream bioethics. Therefore, resolution to moral conflict between the DM and bioethics must address the underlying divide in moral reasoning and perception between disabled and nondisabled people because ideology is primarily driven by the differences in lived experience of disabled people who come to develop differences in their moral psychology.

Variant Moral Psychologies

To expand on the contention between the DM and bioethics, Stramondo offers the example of physician assisted suicide (PAS) to illustrate how moral perception and reasoning differ between these two groups specifically with regard to the principle of autonomy. The different applications of the principle of autonomy taken up by disabled and nondisabled people leads to dramatically different perceptions of the moral issues in PAS debates.

 Most mainstream bioethicists perceive the main moral dilemma of PAS as a classic conflict between the principles of beneficence and autonomy, mostly viewing those seeking PAS as vulnerable patients needing to be empowered to express their autonomous choices in defiance of the illegitimate authority of paternalistic physicians (p. 24).

The principle of autonomy, or the right to self-determination is central to bioethics. In determining whether a person has the opportunity to act autonomously, the bioethicist only needs to ensure that the individual has “a substantial degree of understanding and freedom from constraint” 1 The paradigmatic case of this constraint is often interference from paternalistic physicians or institutions.

Disability scholars and advocates in the DM, on the other hand, see this championing of autonomy in bioethics as hypocritical and harmful whenever disability is involved.

The most important secular social justice argument offered by the disability movement against PAS is aimed at problematizing the sort of simple appeal to autonomy used by mainstream bioethics to support PAS. Many argue that appeals to the autonomy of the individual to choose PAS do not recognize the social context of oppression within which the supposed choice is made and that the conditions of this context compromise the authenticity of the individual’s choice by obscuring the coercive impact of systematic, institutionalized discrimination (p. 25).

What bioethics sees as autonomy, the DM sees as social coercion. People with disabilities are one of the most segregated, undereducated, and impoverished minority groups in the country. Disability oppression takes its toll on individuals with disability after they have repeatedly struggled with bias, barriers to access, structural discrimination in all areas of life. When this is compounded with the reality of societal prejudice and stigma, the result is often what Carol J. Gill refers to as “disability burn-out”—“the emotional despair engendered by thwarted opportunities and blocked goals.” 2 Yet ironically, when these disabled individuals decide that PAS is an option, they are often provided with public support for their choice.

Stramondo refers to Longmore who provides the example of the 1989 court-sanctioned PAS of David Rivlin. By all accounts, Rivlin was a highly ambitious person who sought access to a life in the community rather than a nursing home. His disability itself did not seem to be a source of unbearable suffering for him. However, after facing barriers to access of social supports that would allow him to live his life outside of an institution, he grew disappointed, depressed, and ultimately deemed his life meaningless. “Given the absence of real options,” Stramondo writes, “death by assisted suicide becomes not an act of personal autonomy, but an act of desperation” (p. 25). In cases like Rivlin’s, where complex a sociopolitical system determines quality of life for people with disabilities, the concept of autonomy put forth in mainstream bioethics “neglects or obscures some of the most important moral features of a situation in which a disabled person might attempt to ‘hold views, to make choices, and to take actions based on their own personal values and beliefs’ 3” (p. 26). It’s often the case where disabled individuals do not have true autonomy to make self-determined life choices because they do not have access to the resources and options they need. This issue of access is foregrounded in the lives and lived experience of those with disabilities and Stramondo argues that “this attunement toward access as a necessary condition to autonomous choice has been habituated through a socially structured experience of living with disability in a social and physical environment that is often largely inaccessible” (p. 27).

The Origins of Alternative Disability Moral Psychologies

Stramondo believes that much good can come from a collaborative rather than adversarial relationship between the DM and bioethics. He argues that the way to move forward is to confront the differences and conflicts that currently exist. Here, Stramondo addresses how differences in moral psychology are generated by the lived experience of disability. The variations in disability experiences give rise to differences in values. Disability moral psychology is not a monolith. Drawing on Owen Flanagan’s theories of moral psychology in the context of gender and his rejection of the two-voice hypothesis, Stramondo argues that there are not two distinct, mutually exclusive voices for disabled and nondisabled people: “It would be absurd to claim that every disabled person reasons about and perceives every moral problem in the same way, which is radically different from the reasoning and perceiving of any and all disabled people” (p. 28). Instead, differences can be found in the content or types of problems that disabled and nondisabled people encounter. Patterns of lived experience “leads to the development of different types of moral competencies from frequency of use” (p. 28):

The idea here is that social identities structure our lives such that different groups of people encounter different sorts of moral problems and thus develop different sorts of moral competencies (p. 28).

In other words, it is social identity such as being disabled that will determine how practiced and effectual one is in dealing with a particular problem. Yet, when disability scholars and activists introduce their moral competencies into questions and problems in mainstream bioethics, moral conflict often arises because of the social power and privilege that the field of bioethics maintains.

Charting a Path Forward

The serious, long-term uptake in mainstream bioethics of the moral perceptions and reasoning deployed by disabled people depends on adjusting concrete practices and institutions within which a nondisabled moral psychology develops (p. 29).

Stramondo offers a few starting points for enacting structural change. The first step is using empirical methodologies to “clarify the scope and depth of the variations in moral psychology between disabled and nondisabled people as they arise in biomedicine” (p. 29). This would help identify the where variations are found, their contexts, and their prevalence. Beyond this, mainstream bioethics must make room for disabled voices in the discipline. According to Stramondo, this requires removing more than just barriers to accessibility. He notes that entry into the field requires formal training and therefore a way to promote inclusion of disabled people would be through active establishment of affirmative action programs that recruit them to graduate programs. Lastly, he argues that the curriculum of bioethics must be infused with the history, culture, and theory of disability studies and “it should also include nuanced, politically aware narratives of life experience with disability—narratives that challenge the stereotypical tropes of popular culture and give aspiring bioethicists and health care professionals a richer understanding of disability from which to deliberate” (p. 29). Lived experience of disability creates variation in moral psychology of disabled people and therefore can be a resource for bioethics. Quoting Stramondo:

Developing a widespread, rich understanding of the phenomenal experience of disability from a social and political viewpoint, rather than a purely medicalized one, would go a long way toward establishing the conditions in which nondisabled bioethicists and health care providers could develop the moral perception and reasoning that would let them enter into constructive dialogue with the disability movement (p. 29).

 

Notes:

  1. Beauchamp, Tom L. and James F. Childress. Principles of Biomedical Ethics, sixth edition. New York: Oxford University Press, 2009: 103.
  2. Gill, Carol J. “Depression in the Context of Disability and the ‘Right to Die’.” Theoretical Medicine 25, no. 3 (2004): 180.
  3. Beauchamp, Tom L. and James F. Childress. Principles of Biomedical Ethics, sixth edition. New York: Oxford University Press, 2009: 103.

The Case for Conserving Disability

Notes on Rosemarie Garland-Thomson’s fantastic article.

Garland-Thomson, Rosemarie. “The Case for Conserving Disability.” Bioethical Inquiry 9, no. 3 (2012): 339-355.


The historical and ideological trope (described by David Mitchell and Sharon Snyder) that disability disqualifies people from participation in society is a commonly held view of disability in our society. According to disability studies scholar and bioethicist Rosemarie Garland-Thomson, this understanding of disability is rooted in eugenic logic, which “tells us that our world would be a better place without disability” and promotes efforts for its elimination (pp. 340-341). In this article, Garland-Thomson explores “the bioethical question of why we might want to conserve rather than eliminate disability from the human condition” (p. 341). She argues that rather than repeat claims that conceptualize disability as disqualification, where it is only associated with “pain, disease, suffering, functional limitation, abnormality, dependence, social stigma, and economic disadvantage,” disability should be reconsidered in terms of the benefit it bestows on society and therefore should be conserved: preserved intact, kept alive, and encouraged to flourish. She employs the language of environmental conservation intentionally to suggest that rather than being a restrictive liability, disability is a generative and beneficial resource that brings diversity to the human experience. Considering “the cultural and material contribution disability offers the world,” Garland-Thomson calls on disability to be celebrated and valued as a good in itself rather than just protected for its presumed fragility and vulnerability (p. 341). Employing counter-eugenic logic, she argues that disability provides humankind with invaluable resources in three interrelated areas: narrative, epistemology, and ethics.

What is Disability?

It’s first important to understand how Garland-Thomson goes about defining disability. She provides both a political and cultural definition of the term. For a political definition, she turns to the Americans with Disabilities Act of 1990 and the United Nations Convention of Rights of People with Disabilities of 2009 to highlight how each is dependent on a medical model of disability. For her preferred cultural definition of disability, she draws on phenomenology and constructivist understandings of disability in terms of “identity, materiality, and being” (p. 342) and argues that “what we think of as disability begins in bodily variation and the inherent dynamism of the flesh” (p. 342). In other words, disability can be understood in how the body is continuously transformed in its interactions with the environment over time. Because “we are fragile, limited, and pliable in the face of life itself,” Garland-Thomson argues that we “evolve into disability.” As a result, “disability is perhaps the essential characteristic of being human” (p. 342).

Disability as a Resource

People with disabilities enrich the world, not necessarily or only through economic contributions, but simply through their presence. This is what she calls her “because-of-rather-than-in-spite-of counter-eugenic position” (p. 343). Garland-Thomson argues that “as both a generative concept and a fundamental human experience,” disability has the potential to make meaning through three interrelated ways: life narratives, knowledge production, and ethical insight.

Disability as a Narrative Resource

Disability can help convey human stories. In discussing disability as a narrative resource, Garland-Thomson refers to Leslie Fiedler’s 1978 book, Freaks: Myths and Images of the Secret Self, and Arthur W. Frank’s 1995 book, The Wounded Storyteller: Body, Illness and Ethics. She argues that disability narratives contribute to “the cultural work of teaching the nondisabled to be more human” (p. 344). Fielder seeks to preserve “extravagant disability in the world” through disability-as-freakdom that raises consciousness in the nondisabled that enables them to become more human through self-awareness. “For Fielder,” she writes, “people with extravagantly manifest disabilities should inhabit the world to provide theatrical, edifying encounters between ordinary folk dulled by the ordinary, needing an abrupt consciousness-raising exercise to be awakened to their own internal monster” (p. 344). For Frank, disability is a narrative resource in the form of self-story. Frank sees disability as a resource for disabled people and asserts that first-person narrative has a restorative power because it enriches self-understanding and identity formation for people who have been thrust into a sick role. “Crucial to both Fiedler’s and Frank’s accounts of disability as a narrative resource,” she argues, is the idea of “suffering as ennobling” (p. 345).

Disability as Epistemic Resource

 Because of being disabled, not in spite of it, the disabled have unique experiences in this world compared to the nondisabled population, and therefore the disability and the experience of being disabled are a resource for novel insights and knowledge that only be gained because of the disability. Garland-Thomson references the 2008 book, Disability Bioethics: Moral Bodies, Moral Difference by Jackie Leach Scully to describe the ways that disabled bodies create “ways of knowing shaped by embodiment that are distinctive from the ways of knowing that a nondisabled body develops as it interacts with a world built to accommodate it” (p. 346). Garland-Thomson provides the example of deaf-blind activist and writer, Helen Keller, who generated “alternative or minority ways of knowing” (p. 346) when her other senses were heightened. The result was a novel way of experiencing the world not available to the nondisabled.

Disability as Ethical Resource

 In her discussion of disability as an ethical resource, Garland-Thomson refers to Michael J. Sandel’s 2007 book, The Case Against Perfection: Ethics in the Age of Genetic Engineering. Sandel describes disabilities, particularly children born with disabilities, as unique ethical opportunities that allow us to “appreciate children as gifts” and to accept them “as they come” without controlling intervention or desire to interfere in some way with their inherent humanness (p. 347). Sandel vies the modern impulse to control or restrict as reflecting our hubris and narcissism and believes the cultural work of disability is to defeat this self-aggrandizement and getting back to “an appreciation of the gifted character” of humans as they exist. His rationale for conserving disability is similar to Fiedler’s in suggesting that the disabled can help make the nondisabled into better people by teaching them about what it means to be human.

Counter-Eugenic Logic and the Problem of Suffering

 It is well-established that nondisabled people have a much harsher view of what suffering entails for those with disabilities than the people who actually live with disability. The prevention of suffering is one of the most popular eugenic arguments for eliminating disability (and disabled people), but concepts of who actually suffers and how much are widely misunderstood by nondisabled individuals. Many other groups including bioethicists, supporters of physician-assisted suicide, and the reproductive rights movement have used this logic of preventing suffering for making their case in eliminating disability. Often times, empathy underscores these concerns, but the problem with empathy is that it “depends upon the experiences and imagination of the empathizer in regarding another person, prejudices, limited understandings, and narrow expectations can lead one person to project oversimplified or inaccurate assessments of life quality or suffering onto another person” (p. 350). At the extreme, this can lead to “mercy killings,” and it often results in an underestimation about the quality of life of those with disabilities. Through the heartbreaking story of Emily Rupp’s experience of parenting a child with Tay-Sachs disease, Garland-Thomson demonstrates how “suffering expands our imagination about what we can endure” (p. 350). Another benefit of disability that Garland-Thomson gains from Rupp’s experience is that disability has the power to compel us to forget about the future and live in the present tense. Disability therefore flies in the face of modernity, which relies on “a temporal aspiration” (p. 352) due to its unpredictable and uncontrollable nature. Disability then, according to Garland-Thomson, is “a conceptual category that represents something going beyond actual people with disabilities” (p. 352). According to Garland-Thomson, “disability and illness frustrate modernity’s investment in controlling the future” (p. 352).

My Concerns/Questions

What about disabled people who are unwilling to endure the downsides of disability that a movement towards conservation would bring?

In The Wounded Storyteller, Arthur Frank writes about illness self-narratives and not disability specifically. He also describes self-narrative as a way of gaining control over contingency and talks a lot of about crossing a divide between sickness and health and of remission society where “the foreground and background of sickness and health constantly shade into each other.” 1 Are there any complications here with regards to Garland-Thomson’s use of Frank as an example?

 

 

Notes:

  1. Frank, Arthur W. The Wounded Storyteller: Body, Illness and Ethics. Chicago: The University of Chicago Press, 2013: 9.

Invisible Disabilities

N. Ann Davis presents a philosophical and sociological exploration of the concept of disability.

Davis, N. Ann. “Invisible Disability.” Ethics 116, no. 1 (2005): 153-213.


In this article, philosopher N. Ann Davis critically reflects on how difficulties faced by people with invisible disabilities can provide us with a better understanding and appreciation for how normative and deeply flawed our prevailing understandings of disability are.

Human Paradigms and Prevailing Ideologies

Paradigms are associated with particular assumptions about the world. Davis explains that fundamental beliefs about what human beings are and what they should be are expressively embodied in a society’s “human paradigm.” Our society’s human paradigm assigns primacy to meeting able-bodied standards. This paradigm treats being able-bodied as both normal and normative. The flip side of this is that, absent a clear marker of disability, the assumption is made that disabled individuals occupy an “unnatural” or “abnormal” state of human existence. Our human paradigm shapes all aspects of life from directing our personal choices to shaping our institutions and policies. It also gives substance to our understanding of “fulcral concepts like wellness and illness, health and disease, and ability and disability” (p. 157). The presumption that there are deep and obvious differences between being “normal” and being disabled is taken as self-evident and factual. But facts do not speak for themselves . One might consider whether a body without a single impairment exists? Defining disability in terms of ability and disability encourages the exaggeration of difference by nature of their binary opposition. This “commonsense” relationship has been accorded importance by a particular society that has embedded the value into its institutions, policies, and social discourse.

Like other forms of prejudice, ableism rests on a number of largely unchallenged assumptions that inform understandings of disability:

The first is that it is normal for humans to be able-bodied. The second is that a person’s disability is a consequence of (or results from) his or her not being able-bodied. The third is that it is principally their abnormality (or their not being able-bodied) that explains why those who are disabled suffer disadvantage in society: both the suffering and the disadvantage of those who are disabled are natural in the sense that they are consequences of the fact that their bodies are defective in certain respects (p. 164).

The result is a “deficient and defective” (p. 213) understanding of disability and of disabled individuals in terms of purely physical or “objective” standards that sees disadvantage as a natural consequence of the fact that they are disabled (p. 157). Widespread subscription to an ableist ideology that claims  disadvantage is due to abnormality inherent in disabled individuals rather than a society’s policies and practices has resulted in a minority status being accorded to disability. Those who are believed to be in a minority are more likely to be disadvantaged in some way and this disadvantage is thought to stem directly from their inherent deviance rather than the social practices that exclude them. The exaggeration of difference between the polarizing concepts of ability and disability and normality and abnormality makes disability seem exceptional and unusual. According to Davis, such a view might explain why there has been a reluctance to endorse policies of accommodation that would make life easier and better for people with disabilities (and those who interact with them): “if they take abnormality to imply rarity, then the resistance to providing more robust accommodation of people with disabilities might stem from the belief that it is only a small portion of people who would be benefited by our so doing or that it is somehow unfair to expect ‘us’ to make sacrifices to benefit ‘them’” (pp. 176-177).

Defensive Strategies

When something is terrifying enough, people seek to protect themselves by putting distance between themselves and the terrifying thing. Davis argues that the push for clear demarcation between people with visible markers (disabled) and people without visible markers (assumed nondisabled) is a defensive strategy employed by our natural tendency to deny human mortality and frailty. Philosopher Martha Nussbaum states, “Human beings are born into a world that they have not made and do not control.” 1 While certain identity characteristics, like racial, ethnic, and gender categories, are considered fixed and unchanging, disability is an identity category any person can enter at any time. The longer we live, the greater are the odds that we will live some portion of our lives as disabled. Those who meet able-bodied standards now cannot expect to maintain them indefinitely. To recognize our own vulnerability and frailty involves acknowledging “that even the best-ordered, most well thought-out, and deeply considered life plans can be derailed by things that lie outside of our control, and the acknowledgment that our lives may not be seen as good by other people even when we succeed in living lives that are good by our own lights” (p. 193). According to Nussbaum, able-bodied individuals “know that their bodies are frail and vulnerable, but when they can stigmatize the physically disabled, they feel a lot better about their own human weakness.” 2 The defensive strategies employed by those of us who possess a socially favorable status function to create disability and further marginalize disabled individuals.

Invisible Disabilities

Davis contests the presupposition that life is easier for people with invisible disabilities by arguing the primacy of visibility has become equated with veracity of disability. “When individuals are not ‘seen’ as disabled,” Davis argues, “it can be more difficult for them to secure the assistance or accommodation they need to function effectively” (p. 154). When disabilities become less obvious, however, people receive them with increasingly skeptical stance. The skepticism that confronts a person with an invisible disability is deep and multidimensional. The specter of lack of motivation or will to change often come into play in cases where “evidence” of a person’s disability lacks an identifiable physical cause and is based exclusively on subjective reports. Davis refers to “the myth of the world-transcendent will” to describe the oft-expressed view that perceived incapacities for some individuals stem not from a true disability but from an inability to “galvanize the will” overcome their situation (p. 186).  As a result, people with invisible disabilities are often subjected to a very specific ableist attitude that casts doubt upon the severity of their condition or its existence altogether. Individuals with invisible disabilities are often forced to “prove” to hostile strangers they are really disabled and not merely seeking undeserved advantages:

“They thus face a double bind: either they forgo the assistance or accommodation they need—and thus suffer the consequences of attempting to do things they may not be able to do safely by themselves—or they endure the discomfort of subjecting themselves to strangers’ interrogations. For those who are disabled, not receiving needed assistance is not merely disappointing or frustrating: it may be an insuperable obstacle or a risk to health or life” (pp. 154-155).

Having to repeatedly disclose one’s disability in an effort to get recognition and accommodation can be, as Davis writes, “an awkward and thoroughly unpleasant undertaking” (p. 205). Davis argues that “people whose disabilities are invisible are regularly put in the position of having to challenge the adequacy of our society’s human paradigm head on, and of having to confront the wall of denial that surrounds and upholds our subscription to this paradigm” (p. 205). When individuals appear to meet able-bodied standards, they are presumed to be “normal” (e.g., nondisabled). Because people with invisible disabilities can often “pass” as able-bodied, their claims to disability are often called into question and sometimes deemed unnecessary. This contributes to this group’s further exclusion and invisibility from the public sphere. The hegemony of ability and the idea of physical perfection versus defect has resulted in, to cite Nussbaum again, “the creation of two worlds: the public world of the ordinary citizen and the hidden world of people with disabilities, who are implicitly held to have no right to inhabit the public world.” 3

A Posturing of Denial

Why do we continue to embrace views of disability that are based on generally unexamined and uncritical assumptions and are so clearly inhumane and morally indefensible?

Davis argues that the reason behind many prevailing views of disability and attitudes toward disabled individuals is society’s encouragement and adoption of “a deforming posture of denial” (pp. 188-189). According to Davis, when able-bodied people deny their own vulnerability and frailty, they experience a diminished humanity for people with disabilities and are less likely to want to engage with them. The result, according to Davis, is a personal and moral impoverishment:

“In continuing to advocate—or even tolerate—our society’s subscription to a human paradigm that marginalizes disabled persons, and a dominant ideology that pathologizes them, we not only harm those whom we now marginalize but also do something that threatens to make our own lives go less well by our own lights. If our society continues to marginalize and devalue those who are disabled, then it is likely that most of us will face marginalization” (p. 191).

Embracing and giving weight to the lived experience of people with disability in ways that encourages their active participation in the public realm is one small move in the right direction. In making the social realm more accessible to disabled individuals, we conceptualize disability as a benefit rather than a defect in  “the richness and diversity of the human good, the multiplicity of the ways in which it can be attained, and the unduly restrictive consequences of our previous modus vivendi” (p. 201).

But an awareness is only half the battle:

“However, even if we concede that those who live in our society now nominally recognize that it is indefensible to turn away from people with disabilities, ignore them, or treat them in ways that are blatantly discriminatory, it can be argued that the defensiveness and denial implicit in our continued commitment to a human paradigm that accords so much importance to meeting able-bodied standards help to perpetuate a deeper, more insidious, and more damaging denial of the humanity of disabled persons. As a society, we have failed to recognize that the very patterns of contemporary American life and the institutions that sustain it often discount or exclude disabled persons and, thus, effectively remove them from the public domain” (p. 197).

In exposing the cultural and institutional context in which understandings of disability and disabled individuals are embedded as well as acknowledging our own anxieties in becoming disabled, Davis encourages us to recognize that people with disabilities are not “abnormal,” “deviant,” or even all that difference from able-bodied individuals. It is this realization she hopes “may help pave the way toward a more compassionate view of persons with disabilities, and of ourselves as embodied human beings” (p. 213).

 

Notes:

  1. Nussbaum, Martha C. Hiding from Humanity: Disgust, Shame, and the Law. (Princeton, NJ: Princeton University Press, 2004), 177. 
  2. Ibid., 219.
  3. Ibid., 308.

Great Articles, Part 4

In no particular order, these are some of the best articles on mental illness I have read recently.

The Americanization of Mental Illness by Ethan Watters (New York Times Magazine)

Ethan Watters argues that Western thinking about mental illness has gained a foothold around the globe thanks to the aggressive promotion by both the psychiatric and pharmaceutical industries. In the process, Western diagnoses have increasingly taken the place of traditional experiences and explanations for mental illness. Quoth Ethan:

For more than a generation now, we in the West have aggressively spread our modern knowledge of mental illness around the world. We have done this in the name of science, believing that our approaches reveal the biological basis of psychic suffering and dispel prescientific myths and harmful stigma. There is now good evidence to suggest that in the process of teaching the rest of the world to think like us, we’ve been exporting our Western “symptom repertoire” as well. That is, we’ve been changing not only the treatments but also the expression of mental illness in other cultures. Indeed, a handful of mental-health disorders — depression, post-traumatic stress disorder and anorexia among them — now appear to be spreading across cultures with the speed of contagious diseases. These symptom clusters are becoming the lingua franca of human suffering, replacing indigenous forms of mental illness.

Cross-cultural psychiatrists and anthropologists have argued through their research on mental illnesses that these disorders are not discrete entities like viruses that have their own natural history. Instead their research findings tell them that mental illness has never been uniformly the same across the globe, either in the form the illness takes as well as the rate at which it affects others but are “inevitably sparked and shaped by the ethos of particular times and places.”

It’s not surprising to me that many mental disorders are the result of the numerous socially accepted ways we fuck each other up.

Overall, I agree with Watters in his assessment that manifestations of mental illness are shaped by local culture and customs, that people are presenting with symptoms that suggest Western-style depression and schizophrenia in places where they have been unrecognized in the past, and the pharmaceutical industry is aggressive in promoting the diagnosis of diseases for which it sells treatments. At the same time, isn’t it the manifestations that are culturally bound, but not necessarily the disorders themselves? Depression, schizophrenia, OCD, anorexia: I still believe that these are real entities no matter which culture you observe. That’s not to say that the etiology of the disturbance does not differ by culture. I also have a hard time buying his argument the premodern societies are somehow less stressful than modern ones. Still, this is a fantastic article that was published this prior to the release of Watters’s book, Crazy Like Us: The Globalization of the American Psyche.


The Therapist Who Saved My Life by Ella Wilson (Literary Hub)

This essay is gorgeous.

After many suicide attempts, a variety of diagnoses, and even more prescriptions, Ella Wilson was ready to give up.

I have been diagnosed with bipolar II, borderline personality disorder, anorexia, unipolar depression, generalized anxiety disorder, and treatment-resistant depression. These have been countered with Paxil, Effexor, Remeron, Klonopin, Xanax, Prozac, Zyprexa, Seroquel, Abilify, Lexapro, Celexa, Chinese herbs, electroconvulsive therapy, hypnosis, leafy greens, fish oil, vitamin B12, St. John’s wort, group therapy, light therapy, talk therapy, cognitive behavioral therapy, dialectical behavioral therapy, eye movement desensitization and reprocessing, and acupuncture. But none of these things helped. There was no way they could. You cannot fix someone who does not feel connected to the idea of living with a pill, any more than you can fix a car without wheels by filling the washer reservoir with blue liquid.

Then she met a woman who would pull her back and make her feel of this world again. This woman was her therapist. A very unconventional therapist and many would say a very unprofessional therapist. But effective when nothing else was. Wilson explains:

The only way to come at a problem of this magnitude and confusion is not with sense; it is not with reason or science; it is not with pills or lists, electrodes or clever sayings. A problem of this scale and unnameability needs to be met with nonsense, with moonshine and malarkey. With magic and oracular thinking. Insanity meeting insanity.

Ella engaged in a different kind of therapy, the kind of therapy “they don’t teach at therapy school.”

This therapist was not treating me like another client. She was doing more for me than therapists did. And this did not scare her. She was wonderfully unafraid to like me, to love me, to share her story with me, to walk down the street with me, to want me alive, to care for me. And this lack of fear on her part vibrated as she held my hands and smiled into me. We can do this.

Ella describes her therapist as a connector (as opposed to a professional nodder).

She did not leave me in my pain and sadness, she brought her own out to the moorlands that howled with wind and nothingness and sat down across from me. She offered up her fears and devastations as anchors. Her scars made her a believable hero. She was just the kind of woman who might change someone’s life.


Insane. Invisible. In Danger. by Leonora LaPeter Anton, Michael Braga, and Anthony Cormier (Tampa Bay Times and Sarasota Herald-Tribune)

This investigative report on Florida’s mental health care system won the Pulitzer Prize. It’s so deserved. This is a must-read series that sheds light on the dark and grim realities inside Florida’s mental health hospitals. The accounts of deplorable conditions are harrowing. Florida ranks 49th in state mental-health agency funding per-capita. This series shows how funding and staff shortages contributed to unhealthy and dangerous conditions in the state’s mental hospitals. The reporters documented how the safety and lives of patients and staff were at great risk.

The stories (and accompanying surveillance videos) are devastating: staffers alone on the wards being brutally beaten or stabbed by patients; patients with no protection being killed—in one case stomped to death—by other patients; patients with life-threatening injuries ignored until it was too late to save them; 1,000 patients who have injured themselves or others over five years; and the relentless bureaucratic neglect amid draconian budget cuts that enabled it all. Not to mention the “wall of secrecy” protecting the hospitals and abusive workers that the two papers spent more than a year trying to penetrate.

The reporters immersed themselves in the day-to-day realities of the state’s six main mental health hospitals and discover their disturbing secrets. These reporters spent over a year investigating life in these mental hospitals including interviewing patients, their families, and examining numerous official records as well as hospital and police records. They found:

  • Over the past five years, at least 15 people died after they injured themselves or were attacked by other patients. One man with a history of suicide attempts jumped off the eighth floor of a parking garage. Another was stomped to death because no one separated him from rivals even though they had beaten him up the night before.
  • Staffing shortages so acute that violent patients wandered the halls unsupervised.
  • Employees left alone to oversee 15 or more mentally ill men. Sometimes they carried no radio to call for help, with the nearest guard in another building or on another floor.
  • Even when patients were placed under special watch, they were still able to swallow batteries and razor blades or hoard weapons to use on other patients. At a hospital in Florida City, a patient needed nothing more than a stack of paper to break out of his locked room and stab his neighbor 10 times. As the man bled on the floor, a staff member, unaware of what had happened, helped the attacker wash his bloody clothes.
  • Florida has no statewide minimum staffing requirements. And there are virtually no repercussions for administrators, even when someone dies. State regulators have fined the hospitals a total of $2,500 in the past five years. One hospital paid $1,000 after a patient escaped and was run over by a truck.
  • At least three people died because hospital workers took too long to call 911. Some employees said they felt pressure not to call paramedics because of the expense. Others said they were required to track down a supervisor first, leading to delays.

The series was so powerful that it prompted change from lawmakers who appropriated an extra $55 million toward fixing systemic problems in the mental health care system. This is truly important and impressive reporting that is truly a public service. Extraordinary work.


Madness and the Muse by Tom Bartlett (The Chronic of Higher Education)

“We’re captivated by the idea of the troubled genius. But is it a fiction?”

And is it tenable? Is it safe?

Tom Bartlett explores Nancy Andreasen’s evidence that mental illness corresponds with creativity. A psychiatry researcher, Andreasen presented the results of her landmark study that found that 8 out of 10 writers had experienced some form of mental illness in their lives.

For more than a decade, Andreasen interviewed and tracked 30 faculty members from the renowned writing workshop at the University of Iowa, where she is a professor of psychiatry. She also interviewed and tracked 30 control subjects of similar age and IQ who worked as administrators, lawyers, social workers, and so on. She questioned and diagnosed subjects using a methodology she devised. Instead of identifying a passel of schizophrenic novelists, Andreasen stumbled on extremely high rates of mood disorders like depression and mania among the writers. The gap between the writers and the control subjects was huge: Eighty percent of writers reported some mental illness compared with 30 percent of nonwriters.

This research paved the way for Kay Redfield Jamison, who in her book, Touched With Fire: Manic-Depressive Illness and the Artistic Temperament, examined 47 prominent poets, playwrights, novelists, biographers, and artists and found that a significant portion of them had mood disorders.

However, not everyone agrees. Other researchers argue that the evidence is lacking and have suggested that creativity is more associated with psychological stability. One of Andreasen’s stanchest critics is Judith Schlesinger who authored The Insanity Hoax. I tend to agree that the “mad genius” stereotype is not only simplistic and underdeveloped, it is also risky. The concept of a mad genius suggests that treatment kills creativity and as a result most people who believe this will not seek psychiatric treatment because they fear losing this elemental part of their lives. Patients who resist treatment are at serious risk for death by suicide.

Those who are high-functioning and productive may find that their volatile and destructive symptoms give them a characteristic authenticity, a raw-nerve emotional oomph and they may resist treatment. It may take a rock bottom attempt at self-harm to get them to accept the severity of their illness. And it may in some cases be too late. Relinquishing the idea that romanticized capital-M Madness makes one more productive and authentic instead of identifying as someone who has an illness can be difficult and unsexy, but it may be the key to saving their life.



No One Cares About Crazy People

This book should be required reading for every citizen.

Powers, Ron. No One Cares About Crazy People: The Chaos and Heartbreak of Mental Health in America. New York: Hachette, 2017.


This is an extraordinary and courageous book that took Ron Powers a decade to work up the courage to write. His son Kevin, the younger of his two children, hanged himself in 2005, just before turning 21. Kevin’s brother Dean, two years and eight months older, experienced a psychotic break on Christmas Day 2012; the following summer, he tried to drown himself. Schizophrenia drove both boys to the brink. For years, Powers was determined to not write this book. Thankfully for us, he reconsidered: “I realized that my ten years of silence on the subject, silence that I had justified as insulation against an exercise in self-indulgence, was itself an exercise in self-indulgence” (p. xviii). Powers comes to this passionate and personal project in search of answers. “Something terrible happened to my sons,” he writes, “And I want to know what and why” (p. 126).

This text is part memoir, part social history. The history of mental illness, no one will be surprised to learn, is doleful. Powers provides deep dive accounts of how the mentally ill have been treated over centuries including chapters dedicated to Bedlam, the rise (and fall) of moral treatment, eugenics, the relationship between creativity and madness, the creation of the first psychotropic drugs, deinstitutionalization, the antipsychiatry movement, and the horrors modern warfare takes on the psyche. He interweaves his family’s steadily-worsening crisis with schizophrenia with a broader historical inquiry into how societies have dealt with the mentally ill (not well), and specifically how American society deals with the epidemic today (still not well). The result is a collection of histories tethered together with achingly tender accounts of his beloved boys as they experience carefree and rambunctious childhoods and the beginning of seemingly ordinary teenage years all the while lurking under the surface of all the family happiness is what Powers calls the “scourge” of schizophrenia (p. xv). Below are some of the areas Powers touches on.

What is Schizophrenia?

“This illness,” Powers writes, “shares with cancer, its partner in catastrophic affliction, an almost otherworldly imperviousness to definitive understanding and cure” (p. 2). Even today, it remains the most devastating and feared of all mental disorders. Schizophrenia is best understood not as a single disease, but as a chronic and incurable group of related psychiatric disorders that are thought to be the result of a combination of genetic mutation and “psychosocial” or environmental factors. The illness produces three sets of symptoms: positive, negative, and cognitive. Positive symptoms are often the most dramatic and include auditory and visual hallucinations and delusions. In extreme cases, patients will act on their delusions, sometimes with violent and (self)destructive results. The negative symptoms can be characterized as a range of emotional responses characterized by withdrawal or a lack of something. These take the form of decreased motivation, inability to experience pleasure, cauterized emotions, self-isolating behavior. These negative symptoms are similar, but distinct from clinical depression. Cognitive symptoms can include a loss of memory or diminished ability to process information. A particularly unfortunate feature of this illness, one that often proves to be the greatest barrier to receiving timely (if any) treatment is called anosognosia, or “the false conviction within a person that nothing is wrong with his mind” (p. 27). In psychiatric parlance, this is referred to as a lack of insight.  What this means is that despite their irrational and out-of-control behavior, the patient remains convinced that nothing is wrong with their mind. Anosognosia is a by-product of psychosis and occurs in approximately half of all cases of schizophrenia. Schizophrenia afflicts slightly more than one in one hundred people.

Schizophrenia’s prognosis today is essentially the same as it was during the time of Emil Kraepelin, the early twentieth century German psychiatrist who first used empirical brain science in his quest to understand psychological maladies. Kraepelin is credited with much of the medical community’s initial understanding of schizophrenia. “Dementia praecox,” as Kraepelin knew it was a progressive and neurodegenerative disease that he observed in a significant number of patients in their teens and early twenties. Kraepelin was the first to observe a distinction between manic depression (also known as bipolar disorder), a condition that can also include psychotic symptoms, and what is today called schizophrenia. Swiss psychiatrist Eugen Bleuler was responsible for coining the actual term schizophrenia (or “the schizophrenias”) to replace dementia praecox. In Greek, the word literally means “a splitting of the mind.” Bleuler also introduced the medical community to the “spectrum” concept when he argued that schizophrenia was actually one disorder along a spectrum. Schizoaffective disorder, which includes a mood disorder alongside the basic symptoms of schizophrenia, is listed “Schizophrenia Spectrum and Other Psychotic Disorders” in the the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). Though it is closely related to schizophrenia, it is considered to be a different disorder.

Bedlam and Moral Treatment

Powers begins his historical accounting of mental illness with Bedlam and the rise (and fall) of moral treatment. The most influential environmental factor affecting schizophrenia is stress. Because of an Industrial Age intensity toward urban living, “early London was a petri dish for human stress. And madness” (p. 59). The sentiment at the time, one not much different from today, was that the mentally ill contributed nothing to society, held no political sway, and therefore we not fully people: “The mad don’t vote; the mad don’t do anything to generate wealth. Many don’t even know who they are. Why toss good money at them, beyond the costs of keeping them alive?” (p. 63).

As a result, the sane sought accommodations for this growing population at the lowest economic price possible. Their solution was Bedlam, “the vernacular name assigned to the first and most famous madhouse of them all” (p. 59). That infamous institution was London’s Bethlem Royal Hospital and by the mid-eighteenth century, it’s horrifying approach to “caring” for the mentally ill was on full display. This period of time can be marked, according to Powers, as “the true dawn of the epoch in which no one cared about crazy people.” It wouldn’t be the last. In Bedlam, “patients” were routinely shackled, starved, taunted, beaten, experimented upon, hygienically neglected, and forced to live in the most decrepit of conditions. Powers notes how:

patients were “treated,” occasionally and haphazardly—and always, of course, by physicians with no grasp of how the brain worked. More often they were punished…doused with icy water or strapped inside chairs that spun rapidly, or both. These procedures were popular partly because they delivered a double benefit: they also answered as therapy. Some inmates (to use a more accurate term than “patients”) were chained to walls—sometimes for months, occasionally for years, their ankles and wrists festering with gangrene (p. 62).

In response to Bedlam and asylums alike, the first widespread reform movement came about in the late eighteenth century, principled on what came to be known as “moral treatment.” Asylum pioneers such as Philippe Pinel, William Tuke III, and Benjamin Rush advocated a more humane and empathetic approach to dealing with society’s insane. They came to see madness as an affliction that could be cured through respectful relationships and a healthy environment. While reform did occur, it was ultimately short lived. As the general population increased so did the number of insane people needing accommodations and soon new asylums in Western Europe and America were overwhelmed: “There were simply too many more patients, too many more criminals, and too many other kinds of hard cases among patients” (p. 73). Eventually, overcrowding eroded the moral treatment agenda and society once again maintained unkept institutions and asylums notorious in their neglect for patients. It was during this time that Dorothea Dix rose up as an advocate for the mentally ill. Tirelessly, she:

embarked upon an eighteenth-month itinerary that took her to jails and asylums throughout Massachusetts, barging past guards to interview patient-inmates and their keepers. At the end of her journey, she was convinced that the moral treatment asylums were in fact benefiting patients, but that their jailing of excess “mad” people was rampant and their plight a front to humanity (p. 71).

As the number of public and private asylums swelled, the agenda for moral treatment became less and less of a priority until it went away entirely. And while conditions never returned entirely to that seen in Bedlam, “the horrid systematic cruelty” towards the mentally ill can still be seen today—“a fact documented by almost weekly news accounts from the human disposal systems that our large urban prisons and hospitals have become” (p. 75).

Eugenics and “the Mentally Unfit”

“It is nearly impossible to make sense of the furious arguments that to this day energize and often impede the interests of the mentally ill without understanding eugenics” (p. 82).

Eugenics, or the practice of manipulating biological systems to refine reproduction, was a movement based on the drastic misunderstanding and misapplied teachings of Charles Darwin’s theory of evolution. Darwin’s theory would become the basis for techniques used by the Nazis to control population through the elimination of the unwanted. However, the eugenics movement was not isolated to Europe and Nazis. The Nazis also borrowed from the U.S. eugenics sterilization program:

In America, sterilization and more invasive measures flourished before and after the war. Indiana enacted the country’s first compulsory sterilization law for the mentally ill in 1909, Washington and California quickly followed…The Golden State became the national leader in the practice, neutering twenty thousand mental patients between the onset and 1979. It was not until September 2014 that the practice was prohibited by a bill signed by Gov. Jerry Brown, following revelations that the state cleaned the ovaries of 148 women between 2006 and 2010 (pp. 98-99).

In 1927, the U.S. Supreme Court decided, by a vote of 8 to 1, to uphold a state’s right to forcibly sterilize a person considered unfit to procreate. The case, known as Buck v. Bell, centered on a young woman named Carrie Buck, whom the state of Virginia had deemed to be “feebleminded.” The law authorized the forced sterilization of anyone deemed to be “unfit.” Buck v. Bell remains law today “and the science of eugenics remains in the annals” (p. 102).

Creativity and Madness

“Do neural links exist between creativity and mental illness? Or, to put it in a couple of other ways: Did Kevin’s and Dean’s artistic gifts put them on a path to schizophrenia? Or, perhaps, vice versa?” (pp. 117-118).

It’s not surprising that Powers dedicates a chapter to the debate over whether artistic talent and mental illness are causally linked. Both of his sons were gifted musicians and writers. He uses this chapter as an opportunity to cite research by psychiatrist Nancy Andreasen, who for more than a decade interviewed and tracked 30 faculty members from the renowned writing workshop at the University of Iowa. She also interviewed and tracked 30 control subjects of similar age and IQ who worked as administrators, lawyers, social workers, and so on. She questioned and diagnosed subjects using a methodology she devised. Instead of identifying a passel of schizophrenic novelists, Andreasen stumbled on extremely high rates of mood disorders like depression and mania among the writers. The gap between the writers and the control subjects was huge with 80 percent of writers reporting some mental illness compared with 30 percent of nonwriters. Andreasen’s findings jive with research done by Kay Redfield Jamison, who in her book, Touched With Fire: Manic-Depressive Illness and the Artistic Temperament, examined 47 prominent poets, playwrights, novelists, biographers, and artists and found that a significant portion of them had mood disorders. Though research has shown that there is a link, it still remains an unqualified and inconclusive one. Powers notes that one major problem for this has to do with coming up with an agreed upon conceptualization of creativity. What exactly is it?

Antipsychiatry

Powers devotes a chapter of his book to “one man tsunami” (p. 156) Thomas Szasz. Szasz was a psychiatrist best known for undermining his own profession, accusing it of being fraudulent, misguided, abusive, and based on a concept that he believed did not exist: mental illness. Szasz’s iconoclastic views, expounded upon in his countless publications, brought him an ardent (if small) devoted following who have had considerable influence. Szasz compared psychiatrists to slave owners and Nazis. During the 1950s and 1960s, Szasz’s ideas gave rise to the antipsychiatry movement, “a loose but enduring affiliation of citizen groups in every state dedicated to the abolition of involuntary mental health care” (p. 160). While this group was small in size, it was disproportionately influential in when it came to legislature and lobbying politicians, medical providers, and the public to partake in their movement.

Modern Warfare and Mental Illness

“The indifference to the suffering of mentally ill servicepeople and service veterans remains a national disgrace” (p. 322).

The demise of eugenics did not result in a moratorium on suffering in the name of “perverted science” (p. 273). Postwar America produced an “unprecedented numbers of disabled servicepeople and veterans—both men and women” and neuropathologist (note: not neurosurgeon) Walter Freeman saw an opportunity to push forth a radical pseudoscientific new cure: the lobotomy. The modern lobotomy, which Powers describes as “the back-alley abortion of brain surgery” was conceived of as an antidote to schizophrenia in 1935. Freeman crudely “simplified” the procedure by using an ice pick to enter the brain under a patient’s eye socket. It was estimated that one-third of his patients’ outcomes were considered “failures” (p. 275). A few medical professionals criticized Freeman and attempted to stop him but because no laws existed to prohibit the procedure, nothing could be done. Freeman was in demand and his impunity derived from a need facilitated by the second world war. Eventually, Freeman was banned from the medical community after losing his operating privileges, but the lobotomy did not die with him. It was still used, albeit rarely once the antipsychotic revolution began.

The war and postwar effects on the mental health of combatants and civilians are incalculable, but due to a “military code of manly silence,” many individuals suffer in silence. Drawing on his own experience of combat, Harry Truman is credited as the first U.S. president willing to recognize the intensity and chaos of war and its effect on the psyche. He was revolutionary in pushing for guaranteed financially protected treatment for not only “warfare’s psychic casualties,” but the rest of the nation’s mental health. In 1946, Truman signed the National Mental Health Act which provided federal money for the first time ever for research into the human mind. Unfortunately, many administrations have cut back or eliminated this funding.

Drugs, Deinstutitonalization, and Disaster

The very notion—Sanity in a bottle! Peace of mind in a popped pill!—so perfectly fit postwar American marketing-conditioned faith in E-Z solutions via consumer products that the wonder-drug blitzkerg was complete as soon as it started (p. 221).

In 1954, a new antipsychotic called Thorazine came on the market.  Among many things, it was touted as a cure for schizophrenia. It wasn’t. At best, it suppressed symptoms. With these drugs and the “atypical” or “second generation” antipsychotics that were pushed to the market in the 1970s came a range of unpleasant and serious side effects including weight gain, heightened anxiety, increased blood pressure, and a condition known as tardive dyskinesia, which resulted in uncontrollable facial tics and tongue-thrusting. It is because of these side effects that a large number of people with schizophrenia stop taking their medication against medical advice.

The development of pharmaceuticals to treat schizophrenia became the impetus for a well-intentioned social program that had disastrously unintended consequences for the mentally ill. On the eve of Thorazine came the Community Mental Health Act (CMHA), signed by President Kennedy in 1963. The CMHA was “designed to solve, once and for all, the malingering scourge of decrepit mental asylums and barbarous care” by allocating promising $150 million in funds over four and a half years to be spent on grants to states for establishing community health centers for the mentally ill. It sounds good, but it quickly “became one of the century’s most enduringly disastrous policy experiments for the mentally ill” (p. 187). Powers writes:

This historic blunder has a name that grotesquely fits the elegance of its design and effects. The name is deinstitutionalization. Deinstitutionalization uprooted what meager stability insane people clung to—the dismal care of state mental asylums—and drove tens of thousands into the streets where they pioneered an entirely new urban subpopulation, the accursed demographic of the mad that we call the homeless (p. 3)

The mentally ill homeless soon shuffled between the streets, hospital ERs, and jails and prisons. The worst of that unmerciful world, unsurprisingly, is the world of US jails and prisons – a world that comes into the ambit of the book because of the legal problems his son Dean encounters. “The American prison system is an archipelago of barbarity,” he writes with damning directness“ (p. 146). According to a Department of Justice study, more than half of the country’s roughly two million prisoners suffer from some kind of mental health problem. Particularly unforgivable and gruesome are the liberal uses of solitary confinement which is known to trigger schizophrenic-like symptoms such as hallucinations and delusions in people who are mentally fit. For people who are already ill, “it is a quick route to deep and lasting psychosis” (p. 148). Powers describes solitary as “a petri dish for the suicidal impulse” (p. 148). Powers’s spends a good amount of pages detailing the fact that jails and prisons have become the de facto mental institutions. The criminalization of mental illness fuels some of the book’s most scathing prose.

Involuntary Commitment

Good intentions and unintended consequences borne by the mentally ill are a theme in this book and in legal history of mental health issues. A desire to preserve autonomy and civil liberties of individuals with mental illnesses has resulted in legislature that presupposes that a person who displays a mental disorder is fully capable of choosing her own treatment, including medications, and therefore may not be forced into doing so. The Lanterman-Petris-Short (LPS) Act, passed by then California governor Ronald Reagan, set the precedent for involuntary commitment procedures today.

According to Powers, these laws fail people with schizophrenia and their families, functioning:

to barricade state hospital doors against the admittance of stubbornly resisting patients—at least until a hearing was held. Not a medical hearing, with psychiatrists, but a judicial hearing, with a judge and lawyers. Because stubbornly resisting patients almost always were patients in psychotic states who almost always were in the collateral grip of anosognosia, the legislation meant that the most desperately vulnerable of all sufferers were the ones least likely to get help (p. 195).

Anosognosia is another theme that runs the course of Powers’s book. While it foremost describes the companion affliction of schizophrenia and schizoaffective disorder that blocks a person’s self-awareness and insight into their disease, it also serves a symbol of society’s collective denial and obliviousness towards the needs and humanity of the mentally ill.


Ultimately, Powers intends for this book to comfort families dealing with severe mental illness, to shock general readers with examples of atrocities befalling the mentally ill, to show that “crazy people” are rarely dangerous to anybody but themselves, and to push for significant reform. “I hope you do not ‘enjoy’ this book,” he writes in the Preface. “I hope you are wounded by it; wounded as I have been writing it. Wounded to act, to intervene” (p. xiii). Readers will certainly feel that wound, and they will finish the book more convinced than ever of Powers’s central anthem: “Too many of the mentally ill in our country live under conditions of atrocity” (p. xix).  If any book can begin to change those conditions, this is the one.

Stop Diagnosing Trump

Stop casually throwing around words like “crazy” and “insane” to describe his actions. Stop throwing mentally ill people under the bus.

Like most sensible humans, I am terrified of Donald Trump. He is an openly racist, proudly misogynistic, profoundly incompetent, white nationalist authoritarian who thinks he owns the United States. I brace myself every time I look at the news in anticipation of the newest assault on civic norms, common decency, and social justice. It is impossible to overstate how colossal a fuckup this situation is. So many are reeling as we try to understand how any of this happened. So many of us cannot comprehend how someone could be this way. Unfortunately, this has prompted many people—ranging from journalists, medical professionals, friends and family—to start questioning Trump’s mental health. Does he have narcissistic personality disorder?  Is he delusional and actually psychotic? Is he a psychopath?

Go ahead and spend 30 seconds typing “Trump + mental illness” or “Trump + crazy” (or any variation thereof) into Google News and be prepared for the deluge of hot takes about Trump’s state of mind. Here is a representative sample of what you can expect to see:


Politico Magazine. January 4, 2017.
Huffington Post. December 17, 2016.
STAT. January 30, 2017.

This practice of diagnosing from afar is often called armchair psychiatry and it is intellectually lazy, ethically dubious, and always ableist. But in this case, it is also stigmatizing and extremely harmful. “Crazy is never uttered with compassion” writes Patrick Kennedy, a former congressman and mental health advocate. He is absolutely right. People are bandying around words like “crazy” and “insane” with abandon when it comes to Trump and the valence of those terms is uniformly negative.

Let me be clear: Every time you call Trump “crazy” or “insane” or “psychotic,”  you rely on the stigma of mental illness to make a point. Every time you say he is mentally ill, you prevent someone with mental illness from seeking help. It is currently estimated that one in five Americans will suffer from mental illness in a given year, and those numbers are only increasing. When you explain away Trump’s cruelty, arrogance, entitlement, racism, bigotry, sexism ad nauseam as mental illness, you are connecting mental illness with all of those things. You are essentially saying that his vile and evil actions are what mental illness looks like.

As someone who has a mental illness and someone who studies it, let me tell you this: It. Does. Not. Cause. Isms. Mental illness does not make you a racist. It does not make you a misogynist. It does not make you homophobic or transphobic. It does not make you xenophobic. It does not make you ableist.

You know what does make someone those things? The structural political ideologies that are patriarchal and rooted in white supremacy and the oppression of marginalized people. Trump is not a product of psychiatric disorder but the normalization of white supremacy, misogyny, toxic masculinity, and ableism. These are social realities that are found throughout history and have always been popular. The ideology can be traced historically through legislation, statutes, law, and social policy.

The whole rhetoric that comes with saying Trump is mentally ill is always reductive. Reduction requires no stretch on our part to understand the deeper complexities. In dismissing someone or something, you absolve yourself of any responsibility to understand how the whole thing happened. Rather than articulate the ways in which Trump is an evil person, we reduce it to pathology. When we ignore the social and political factors that contribute to white supremacy and toxic masculinity, we effectively remove us from the equation. It is more comfortable to attribute evil behavior to mental illness than deal with the fact that Trump is simply personifying the worst parts of our culture. There are social consequences to framing a social reality as a mental illness. Reducing social realities to an individual problem to be tackled psychologically makes it incredibly hard to create effective social policies to tackle everyday inequalities. Treating the individual conveniently ignores larger, social and structural issues.

There are many grounds on which to criticize Trump. I promise you, there are thousands. Stop hiding ugly social realities under the heading of mental health. Seriously. We proliferate stigma, harm, and harmful ideologies if we do not parse mental health and examine how socialization, entitlement, and privilege empowers Trump and people like him. We cannot lose sight of the fact that Trump has galvanized so many supporters in the first place—which has nothing to do with mental illness. Pathologizing Trump ignores the hundreds of people in government and millions of citizens who support his hateful policies. Trump and his followers are not sick. They are fucking assholes. They are the product of socialization. Not mental illness.