[with given tradition, with ‘totality’] that can open new horizons (Lear 2000, p. 154). As Freud supposedly said to Jung as they were travelling to America to speak at Clark University, ‘They don’t know that we’re bringing the plague
My sons will describe and discuss several dimensions of human experience that present deep moral challenges to any system of universal ‘explanation’. These limit-situations will dramatically underline some problematic effects of concepts of totality. Confronting such disturbing ‘errors’ can help open the way toward richer dimensions of thought and practice.
First, my son Ladson will present the disturbing picture of the ‘Alzheimer-ed’ person that shows how quickly we want to abject and disown whatever disturbs our sense of truth and order. It brings the notion of teleology quickly into doubt. What could possibly be the ‘goal’ of such suffering? Its manifestations disturb our sense of meaning and obliterate any illusion of certainty. What ‘eternal Idea’ from outside the Cave could possibly provide an explanation and justification?
Next, Devon will describe the Utopian modernist vision of a never- ending ‘progress’ that privileges moving people and products rapidly between centres of production and commerce, and has often led to the destruction of intimate human dwelling. The uncontained speed of late capitalism has resulted in the city spaces of agoraphobia, evoking the primal scream so vividly illustrated by the paintings of Edvard Munch. Virilio has described this world as a ‘Museum of Accidents’ (Virilio 2003, p. 58 ff.). This conveys the underlying, horrifying excess in our culture, a ‘Real’ that reason cannot contain.
Finally, Alex will discuss how the genocidal activities of our era are often motivated by a yearning for ‘purity’ or Truth, like the imaginary world of light outside Plato’s Cave. When the ideal is unity there is always the tendency to abject those who are cast as preventing the achievement of Utopia. The horror of genocide is a prism that magnifies the all-too-human tendency to eliminate the troubling ‘other’, whom we blame for disrupting our personal or social worlds. In our anxious yearning to escape the reality of the human condition, the ‘solution’ is all too often the eradication of the messy and troubling ‘Face of the Other’ of whole populations.
My thanks to Michael Horne for his very helpful editing.
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Facing the ‘Alzheimer-ed subject’
Ladson Hinton IV
Then they left her alone as quickly as possible. They were politely kind to her when they ran into her, but they didn’t run into her very often. This was largely because of their busy schedules and Alice’s now rather empty one. Facing her meant facing her mental frailty and the unavoidable thought that, in the blink of an eye, it could happen to them. Facing her was scary.
(Genova 2007, p. 185)
The above passage is from the book Still Alice, this fictional account of the experience of Alice Howland, a Harvard Psychology Professor who was diagnosed with early-onset Alzheimer’s disease (AD). The book portrays changes over time in the subjectivity of a person with AD, from early and subtle symptoms to the point of profound difficulties in recent memory and functioning. Without the anchor of recent memory, her world unravels and fragments and is often profoundly distressing to her. Alice’s presence and her suffering also create discomfort in others. They avoid her, have difficulty ‘facing’ her.
Genova’s account focuses our attention on the illness experiences and moral dimensions of the interpersonal response to the suffering other in the context of Alzheimer’s. To illuminate these issues, this paper draws on Emmanuel Levinas’ work and focuses on the moral and ethical imperative and challenges of engaging persons with Alzheimer’s. It has three parts. First, I consider briefly the emerging body of work on Alzheimer’s and subjectivity, highlighting its multiplicity. Next, I examine key concepts from Levinas’ work, particularly the moral and ethical challenges of the relationship between self and other in the context of suffering. Third, I highlight the contemporary ‘objectification’ of the subjectivity of the person with Alzheimer’s—transforming them into an ‘Alzheimer-ed subject’ and impeding empathic connection.
Multiplicity and subjectivity in persons with Alzheimer’s
In contrast to the sense of homogeneity evoked by monolithic categories such as Alzheimer’s disease, there is a burgeoning literature on the subjectivity of persons with Alzheimer’s from first person and caregiver accounts, art, literature, and studies in gerontology and the social sciences that emphasize the heterogeneity in the process and experience of this disease (Leibing & Cohen 2006). This is probably apparent to many of us when we reflect on family members, friends, or patients who have developed Alzheimer’s. The disease may trigger an emergence of new aspects of personality or an accentuation of prior traits with sometimes quite unexpected consequences—both positive and negative—for interpersonal relationships.
I would like to discuss the work of William Utermohle, a well known artist who continued to paint after he was diagnosed with Alzheimer’s in 1996. In his paintings we see increasing abstraction and fragmentation perhaps reflecting the artist’s struggles to maintain self-awareness. There is also a more vivid use of colour in some of his self-portraits pointing to the complex interplay of creativity and the disease process. Bursts of artistic creativity are not uncommon in persons with Alzheimer’s, even those who are not professional artists. Studies grounded in the social sciences suggest that selfhood is preserved in Alzheimer’s but altered through the interaction of pre-existing personality, brain-based changes in cognition and personality, as well as social interactions.
Even the clinical literature on AD reveals remarkable heterogeneity based on illness severity, patterns of cognitive impairment, the presence of a diverse set of psychologically-based symptoms, and the extent to which insight is preserved. Brain-based Alzheimer’s research highlights striking variability in the pattern and nature of brain changes—so much so that many believe Alzheimer’s will be dis-aggregated to reveal multiple distinct brain diseases. Because basic, and for us taken-for-granted cognitive functions, such as short term memory, insight, and the ability to think abstractly or form coherent narratives, are altered in Alzheimer’s, our ability to understand the the subjectivity of the person with Alzheimer’s is compromised, posing profound problems for our capacity to imagine ourselves in their place.
Levinas and the moral imperative to ‘face the other’
The altered subjectivity of the person with Alzheimer’s creates challenges for us in our attempts to engage and empathize. However, from the standpoint of Emmanuel Levinas, we have a moral and ethical imperative to do so (Levinas 1998). For him, the relationship to the other is a fundamental ethic that precedes all other considerations. Too often, the relationship of the self and other is one of identity—what in analytic terms we might refer to as narcissism, loving others because they are ‘just like us’.
In contrast, for Levinas, the self can only become fully aware of itself as a social and ethical being when the relationship of self and other is experienced as one of non-identity, of the essential otherness of the other. This requires acknowledging the singularity and uniqueness of the other and also their un- knowability. Levinas uses the phrase ‘facing the other’ in his philosophical work to articulate this fundamental relationship of self and other. Our ability to see the ‘face’ of the other is complicated by the fact that the other is at the core unknowable, leaving us with only a partial understanding and appreciation for the subjectivity of the other. Each person carries what Levinas refers to as the ‘trace of the infinite’ that is beyond the capacity of the mind to know. Indeed, we cannot fully know ourselves.
Levinas emphasizes that we face our greatest ethical challenge when confronting the other who is suffering. The suffering other must be ‘welcomed’ and acknowledged without resort to construction of meanings that in any way ‘explain’ or justify their agonies. Thus, Levinas highlights our need to understand how such constructions may become defensive vehicles that amplify suffering, or justify its existence through teleology. Indeed, it is only through recognition that suffering is often ‘meaningless’ that there can be an authentic connection with the other (Edgar 2007; Seeman 2004).
Levinas’ work is useful for thinking about engagement with the subjectivity of persons with Alzheimer’s in two important respects. First, it turns our attention away from the ‘consequences’ of Alzheimer’s and the instrumental aspects of caregiving, to the relational aspect, the engagement with the person and their subjectivity as a core moral and ethical task. His work thus offers an alternative theoretical framework for caregiving (Kleinman 2009). Second, this engagement becomes even more imperative because suffering is common among persons with Alzheimer’s; their suffering and ‘otherness’ conspire in shaping our own desire to ‘turn away’ or to rationalize that which we encounter. There is a certain irony in using Levinas’ work in this context, for he was himself afflicted with Alzheimer’s late in his life.
Lay and professional transformations of subjectivity in Alzheimer’s
I suggest that what keeps us from ‘seeing the face’ of the person with Alzheimer’s is that the disease constitutes a symbolic threat on several levels (Cohen 1998). Alzheimer’s threatens core Western Anglo-American and stereotypically masculine values of self-sufficiency, independence, and rationality (Herskovits & Mitteness 1994). Persons with Alzheimer’s are also threatening to us because they have come to represent for us a kind of ‘death in life’, or transitional zone between life and death, reminding us of the certainty and uncontrollability of our own personal deaths. The public discourse on AD borders on the apocalyptic, such as the warnings about the looming ‘tsunami’ of persons with AD and the threat to our economy, healthcare system, and to caregivers. In this catastrophic mode of thinking, the label of Alzheimer’s and by extension the afflicted person evokes a sense of foreboding and uncontrollability that is anxiety-provoking.
Lay representations of the subjectivity of the person with AD are equally obfuscating. For example, attributing changes related to Alzheimer’s disease to ‘normal ageing’, while deflecting stigma, ignores the profound alterations in subjectivity. Condescending references to behavioural changes in old age as a ‘second childhood’ or ‘craziness’ also serve to stigmatize and diminish the personhood of the person with AD. In social interactions the personhood is also diminished by ignoring the person with Alzheimer’s, because their presence is discomforting or awkward to us or because we assume they cannot speak for themselves. Thus, from a sociological perspective, the label of AD does important ‘work’ on the identity of the afflicted person—they become ‘Alzheimer-ed subjects’. Or to use Jungian parlance, they become the recipients of a whole set of projections that facilitate a turning away, thereby amplifying the suffering of those with the disease, as well as the isolation and suffering of those who provide care.
Suffering is common among persons with AD. The extreme distress, for example, of facing a world without the anchor of recent memory is described in Still Alice. Yet there is a powerful professional tendency towards medicalization of this suffering, leading to costly pharmaceutical interventions that are of marginal benefit or even harmful. Distress becomes ‘neuropsychiatric symptoms’ or ‘problem behaviours’ reflecting underlying brain disease, ignoring the complexity of these symptoms when viewed in the context of interpersonal relationships and personal history (Hinton et al. 2006). In the process, the subjectivity (i.e., the suffering) of the person with AD is pushed to the margins and the focus becomes a materialistic view of the psyche in which alterations in mood, anxiety, and reality orientation become symptoms of a deteriorating brain and there is a shift and exclusive focus on the ‘burdens’ and consequences for caregivers. Biomedicine’s reductionistic tendencies remind us of the search for ‘Truth’ in the allegory of the cave as mentioned in my father’s talk!
In the end, the label of Alzheimer’s carries layers of projections and associated stigma preventing a genuine engagement with the afflicted person’s subjectivity. But Alzheimer’s threatens us in yet another way more central to the analyst’s work. The radical transformation of the subjectivity in Alzheimer’s is a challenge to our own commonplace assumptions about the knowability of others. The ‘gulf’ between ourselves and others is often kept out of view—in Levinas’ perspective others are viewed more as extensions of the self rather than constituted as ‘others’. The sheer ‘otherness’ of the Alzheimer-ed person poses a potential narcissistic threat to us.
Given these challenges, what is the way forward towards a more genuine engagement with the subjectivity of the person with AD? Here we turn again to Levinas, as well as depth psychology. In this vein, we must become aware of our projections and bear the anxiety or other uncomfortable emotions that the Alzheimer-ed other evokes in us. Seen through the lens of Levinas’ perspective, this radical otherness is closely akin to the otherness of the others around us all the time—a reality that we daily deny and evade. One might say that in the process of confronting our own projections and uncomfortableness, we become more fully human and alive (Kleinman 2009).
We are all unknowable at the core, and allowing ourselves to be affected by the unknowability of the Alzheimer-ed other can open a deepened connection to all the faces that we meet. Our projections and rationalizations are our search for the same explanatory forms behind the screen that will relieve us of the terror of unknowability. Such ‘ultimate meanings’ very often obscure and ‘explain away’, rather than enabling us to be more truly present in the world. Levinas would remind us that our own quick tendency for meaning-making, exemplified by the abundant cultural meanings of the term ‘Alzheimer’s’, must be set aside to enable more direct connection with the singularity of the Alzheimer-ed other, and ultimately to self and world.
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Agoraphobia, infinite space, and epistemic rupture: Europe at the end of the 19th century
‘The eternal silence of these infinite spaces frightens me’ Descartes (1670).
What we now call agoraphobia, a panic-like reaction to external urban spaces, became a common experience only in the last twenty years of the nineteenth century. It is a malady of modernity. This malady seemingly came into being because of three historical factors: 1) The cityscape changed into an architectonics of straight corridors and voids (Vidler 2000); 2) These corridors were traversed by accelerating pedestrian and vehicular traffic— by the ‘mobile and anonymous crowd that lies at the heart of modern sensibility’ (Nochlin 1994, p. 26); and (3) Fin de sie`cle fears arose about neurasthenia, sensory overload, and degeneration. Edvard Munch was one of the fin de sie`cle’s neurasthenic panickers. Utilizing, in hyperbolic form, artistic techniques that were developed by artistic predecessors—Renaissance artists (linear perspective), the Impressionists (techniques for depicting motion), and Art Nouveau (the apotheosis of the swirl)—Munch pictorially constructed a nightmare of fear and vertigo, the modern cityscape as a draining place of chaos, anomie, and excessive hurry. In his four paintings, Despair (1892), Evening on Karl Johan Street (1892), The Scream (1893), and Anxiety (1894), Munch depicted his own agoraphobia-type panic attacks (Hinton 2000).
Shifting attitudes to the post-Haussmann industrializing cityscape
Haussmann transformed Paris from a city of winding streets lacking sidewalks, with shopping centred on arcades, to a metropolis of endless, straight streets bordered by sidewalks and rectilinear, bilaterally symmetrical buildings, bring- ing into existence the so-called corridor street (Giedion 1941), a perspective theatre of converging lines racing towards the vanishing point. And increasingly, pedestrian and vehicular traffic dominated the new sidewalks and roads of the cafe ́-, store-, business-, and apartment-lined avenues. In a sense, the Haussmann street was an accelerated version of the covered arcades (on the arcade, see Benjamin 1999) combining the perspective theatre (i.e., long-corridor streets and shopping arcades of repeating elements), consumerism, and agitated activity; it was the mega-arcade, open to the sky, and racing to infinity.
The emergence of neurasthenia
Hypersensitivity to stimuli and the dangerously draining urban landscape
In order to understand the emergence of agoraphobia, it must be situated within its medical-social-technological context. Starting in the 1870s, doctors increasingly worried that exhaustion led to ‘irritable weakness’, that is, a weakness characterized by a hyperreactive nervous system that was particularly prone to activation by external stimuli (Krishaber 1873). Neurasthenia, Beard’s diagnosis (1880), became the best-known system to explain the causes and symptoms of such ‘irritable weakness’. It was in the context of ‘irritable weakness’ and neurasthenia, and of associated medical, sociological, technological, and architectural shifts, that the diagnosis of agoraphobia emerged, the latter configured as a weakened nervous system’s spasms in response to urban stimuli.
Emerging theories about how the cityscape induced panic
An urban planner’s critique of the agoraphobia-causing cityscape
Turn-of-the-century urban planners also attributed agoraphobia to the mod- ernizing landscape. In his The Art of Building Cities (1945 ), Sitte used the term platzangst or platzscheu, meaning ‘plaza fear’ (Collins & Collins 1965, p. 157), to describe what Westphal calls ‘agoraphobia’ (see Knapp & Schumacher 1988). Sitte (1945 , p. 64) ascribed agoraphobia to the new type of square. Sitte (ibid. pp. 63–64) critiqued multiple aspects of the new Haussmann-plan square:
- It was not a square in the true sense, rather being formed by street confluences; it lacked a container effect.
- Owing to the heavy volume of traffic, it was filled with a bothersome din and was difficult to cross.
- Several long straight streets converged on an open area, channelling streams of wind, often thick with dirt, toward the central plaza, where they proceeded to whirl.
- Because of the homogenous nature of the streets, people felt disoriented and were unable to easily locate the desired street.
- In a circular plaza, the experience of walking in a circle, and the view of the circular form itself, worsened the feeling of dizziness.
- At such plazas people were suddenly confronted with a frightening multiplicity of views stretching to infinity, the infinite perspective into nowhere of Haussmann’s ‘corridor street’, but multiplied.
Agoraphobia in Europe at the turn of the century
Existential questions and the meditation on infinity
The emergence of agoraphobia during a period of intense modernization in four of the most populated and radically transformed cities—Vienna, Berlin, Paris, New York—would seem to be no coincidence. Let us take the example of Paris. Before its industrialization, most city streets meandered; and when straight avenues were built, they led to some goal: a plaza containing a fountain, a church, a statue—most often, of the King—or some other point of regal, state, or spiritual importance. But after Haussmannization, a new urban geometry was created. Owing to the straightness of the avenues and the similarity of the buildings, the new cityscape presented—in overwhelming abundance—the phenomenon of the vanishing axis (Panofsky 1997); multiple diagonal lines converged, as in the diagonals of the street, the sidewalk, the roof tops, and the building elements. But the new perspective theatre of the ‘corridor street’ led nowhere and evoked existential questions and became an ever-present metaphor built into architecture: What is found at the point of infinity? What is sacred? Where is my life leading? Am I going nowhere? Is there life after death? What is the meaning of my life? Additionally, size perspective increased the sense of deep space and speed. That is, standardized repeating units, such as carriages and omnibuses and windows, as well as people, appear to become progressively smaller in the distance in the x-and-y axis space, the Descartian space, of the new modern street, creating a feeling of deep space and acceleration. And vast spaces were opened as grand boulevards and large-scale public squares (Vidler 2000). The intoxicating sense of the void and speed were heightened by other aspects of ‘modern’ culture: outdoor spaces presented images of industrialization (wheels in motion and the frenetic city landscape) and the urban crowds rushing to work or hurriedly purchasing goods. The new environment was dizzying through its hurtling linear perspectives and speed, through its voids, through its extreme chaotic complexity, and through its presentation of infinite choice.
It is only in this historical-cultural context that I have described here that one can understand why Munch and his contemporaries experienced such angst in an urban street, only in this context can one understand the panic he had before a sunset on a fjord. His Scream depicts the affect and bodily experience of an agoraphobic and agoraphobia as experienced in a particular place and time. Modernity with its ever more complex environments of new corridor spaces and new spaces of multiple motions, with new ideas about what damages the body, new ideas of what it is to have a fulfilled life, induces new types of agoraphobia. In each case though, there is a radical sense of the world losing a centre, the loss of the sense of a unitary centre, when presented with existential quandaries. Yeats (1919) captures this sentiment in his famous poem written in the aftermath of the First World War:
Turning and turning in a widening gyre,
The falcon cannot hear the falconer;
Things fall apart: the centre cannot hold;
Mere anarchy is loosed upon the world.
That is the time for cosmology making. Jung researched such a radical cosmo