As I glance down the barrel of academic deadline, I am trying to go somewhere with the splitting metaphor in schizophrenia as it relates to narratives of modern scientific objectivity, unity, progress, and purity. It’s very much a mess but one thing I’ve found is that this metaphor, for as much as it’s been dismissed in psychiatry and psychology circles, still has incredible currency in both professional literature and popular culture. It’s literally everywhere. On the covers of books, Schizophrenia Bulletin, professional and popular journals, mainstream news media, pharma ads, etc. It’s… interesting.
Jarman, Michelle, Monaghan, Leila, and Alison Quaggin Harkin (Editors). Barriers and Belonging: Personal Narratives of Disability. Philadelphia, PA: Temple University Press, 2017.
My review of this book is on Metapsychology Online Reviews.
Do you hear or see things others do not hear or see?
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”?
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?
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?
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.
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.
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.
- 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.
Baldwin, Marjorie L. Beyond Schizophrenia: Living and Working with a Serious Mental Illness. Lanham, MD: Rowman & Littlefield, 2016.
My write-up on Metapsychology Online Reviews, along with a few of my cringey typos.
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).
- Beauchamp, Tom L. and James F. Childress. Principles of Biomedical Ethics, sixth edition. New York: Oxford University Press, 2009: 103. ↩
- Gill, Carol J. “Depression in the Context of Disability and the ‘Right to Die’.” Theoretical Medicine 25, no. 3 (2004): 180. ↩
- Beauchamp, Tom L. and James F. Childress. Principles of Biomedical Ethics, sixth edition. New York: Oxford University Press, 2009: 103. ↩
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).
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?
- Frank, Arthur W. The Wounded Storyteller: Body, Illness and Ethics. Chicago: The University of Chicago Press, 2013: 9. ↩