The Metaphor of Splitting

It’s everywhere.

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.

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.