‘The Country of My Disease’:
Genes and Genealogy in Alzheimer’s life-writing
Lucy Burke [1]
The essay explores the ways in which Alzheimer’s life-writing negotiates contemporary biomedical discourses on the brain, brain disease, and selfhood, tracing the ways in which emergent genetic and neuro-scientific knowledge is organized and related to the scripting of life narratives – specifically Charles Pierce’s account of his family’s history of Alzheimer’s disease in his memoir, Hard to Forge. The discussion of this text is framed by an engagement with Nikolas Rose and Carl Novas’s work on biological citizenship and biosociality as a productive context in which to consider how Pierce explores the relationships between genetic research and genealogy and between biomedical and biographical models of the subject.
Introduction
Lennard Davis (2002) has pointed to the protean nature of the category disability. The trouble we have in decisively, definitively determining its boundaries is one of the reasons he describes it as the paradigmatic postmodern subject position. As an identification that encompasses all of us, at some point, in some shape or form, it speaks to our incompleteness as humans, to our collective dependence and neediness. “Impairment”, he notes, “is the rule and normalcy is the fantasy” (Davis 30). His discussion is framed, in part, by the necessity to think through the cultural significance of emergent genetic technologies and their impact upon the ways we think about the relationship between selfhood and the category of disability. One of the consequences of genetic screening and profiling is the necessity to accommodate the particular ways and means of our inevitable impairment. The fictions of autonomy and inviolability are dissolved as soon as we read the map of our inherited disposition to succumb to this or that condition.
The emergence of Alzheimer’s disease (AD) in epidemic proportions toward the end of the twentieth century is the product of biomedical discourse; it is an attribution that signifies the biomedicalisation of dementia in the elderly (Cohen, 2006). What was once viewed as a natural consequence of human ageing has been recast as a definable pathology. Genetic research has played a central role in this process and has done so with typically ambivalent consequences. The ever elusive promise of the miracle cure that legitimates such research is undercut by the fact that the knowledge that enables geneticists to predict the disease (with certainty in the case of early onset AD, and probability in the case of late onset AD) so far outstrips the development of any effective pharmaceutical intervention. This has profound consequences for the ways in which those burdened with the knowledge of their Alzheimer’s genes imagine themselves and construct life narratives. It is precisely the weight of this realisation and the need to make sense of it in relation to the other stories that he tells about himself and his family that Charles Pierce explores in his memoir, Hard to Forget. What I want to do in this essay is to highlight the ways in which Pierce’s text engages with the meaning of identity in both personal and cultural terms in the light of current medical and genetic research on AD. What his memoir so brilliantly demonstrates are the complex and contradictory ways in which particular conditions are integrated into the nexus of stories that constitute identity. This involves forging new affiliations and new ways of mapping social and familial relationships in the light of both Alzheimer’s as his ‘family’s disease’ and the research that seeks to explain it.
Biological Citizenship
I would like to start by contextualising my reading of Pierce’s memoir in relation to Nikolas Rose and Carl Novas’s work on biological citizenship and the reframing of identity in the age of the genome. Their work is important because it moves beyond the assumption of a kind of ontological malignancy on the part of scientific and medical discourse that is often taken as a given in human scientific critiques of these fields. An engagement with the literature and lifewriting that has proliferated around AD suggests more complex and often contradictory interactions with forms of genetic and neuro-scientific knowledge. These discourses are accommodated, even embraced at points and rejected at others. I will say more about this in my conclusion.
In their essay, “Biological Citizenship” (2002), Rose and Novas argue that recent (and ongoing) developments in biology, bioscience and biomedicine such as the genome project question existing conceptions of national citizenship and thus intersect with other challenges to the idea of citizenship as an expression of national belonging, as with current forms of political and economic migration in the European Union for example. Pointing out that the nation can no longer be construed as a “cultural or religious unity with a single bounded national economy”, they set out to demonstrate the ways in which particular biological presuppositions have framed many citizenship projects, shaped “conceptions of what it means to be a citizen, and underpinned distinctions between actual, potential, troublesome and impossible citizens” (2). They coin the term ‘biological citizenship’ “to encompass all those citizenship projects that have linked their conceptions of citizens to beliefs about the biological existence of human beings, as individuals, as families and lineages, as communities, as population and races, and as a species” (2).
To evoke the notion of a biological citizenship inevitably recalls the eugenic, racialized and nationalised citizenship projects of the nineteenth and twentieth centuries. Like Novas and Rose, among others, I believe that in its contemporary form biological citizenship and its collective expression in what Paul Rabinow terms ‘biosociality’ needs to be distinguished from these earlier formations (Novas and Rose; Rabinow, 1996). However, they remain significant in shaping perceptions of the ethical and political threat that technologies such as genetic mapping represent, and for this reason it is worth briefly attending to the history and some of the ways in which it has been interpreted before we go on to address the current situation. The work of Giorgio Agamben provides us with one way of accounting for the intersection of the biological and the political by way of the concept of biopower and his development of Foucault’s notion of the biopolitical. I want to suggest that while Agamben’s work is important, and evidently seductive given the rapt attention it has received, his construction of biopolitics is inadequate for the task of addressing the complexity of contemporary interactions between the state, its ‘subjects’ and emergent biotechnological research.
Contemporary bioethical debate around the consequences of new biological and medical technologies necessarily takes place in the shadows of Tuskegee and Auschwitz (among other benighted places) and in the wake of the various accords that seek to address such abuses: for instance, The Nuremberg Code (1947), The Geneva Declaration (1948) and subsequent amendments (1968, 1984, 1994, 2005, 2006), The Helsinki Declaration (1964) and the Belmont Report (1978). As Rabinow and Rose have pointed out in their discussion of the uses and abuses of the concept of biopower, it is easy to extrapolate an inexorable slide toward the deathly eugenic mission of the Nazi concentration camps in the imaginative and nightmarish possibilities that genetic and stem cell research afford us (3). The impulse to engage in apocalyptic predictions as to the implications of emergent biotechnologies such as genetic mapping and cloning is powerfully inscribed within the western cultural imaginary as numerous Hollywood blockbusters attest – for instance Gattaca (1997)and more recently Michael Bay’s The Island (2005) in which humans are cloned from the cells of the wealthy in order to provide them with body parts on demand.
In theoretical discourse we see the foundations of this kind of cautionary position in texts such as Agamben’s highly influential, Homo Sacer: Sovereign Power and the Bare Life (1998), among other admonitory analyses of contemporary biopolitics (for instance, Hardt and Negri, 2000, and in a rather different vein, Habermas, 2003). Agamben’s aim is to expose the ‘inner solidarity of democracy and totalitarianism’ by way of an analysis of the concept of biopower as that which expresses the power of the state and its institutions (notably medical and legal apparatus in the twentieth century) over the ‘bare life’ of its subjects. His argument is that biopower is the defining characteristic of the western political system from the ancient world to the present and that the death camp “is the very paradigm of political space at the point at which politics becomes biopolitics” (171). Far from a unique or exceptional manifestation of barbarity, the Holocaust is thus continuous with the political structures of western civilization and the law, an ‘enduring possibility’ rather than an aberrant event (Rose and Rabinow 3).
For Agamben, modern rule is guaranteed by the power to create a ‘state of exception’ that enables the production of bare lives, divested of legal rights and claims that can then be “killed without the commission of a crime” (1998, 139; see also Agamben, 2005). He traces this in the third part of Homo Sacer through an analysis of the role of Karl Binding and Alfred Hoche’s discussion of the ethics of euthanasia in Die Freigabe der Vernichtung Lebenswerten Lebens (“Authorisation for the Annihilation of Life Unworthy of Being Lived”), first published in 1920, in relation to the subsequent euthanasia programmes of the Third Reich that saw the mass murder of the disabled and mentally ill in the hospitals of Grafeneck, Hadamer and Hartheim, among other places. He locates in this text, “the fundamental biopolitical structure of modernity – the decision on the value (or nonvalue) of life as such” (137). Medical ethical debate around the value of particular lives thus becomes inextricably tied to the “determination of a threshold beyond which life ceases to have any juridical value and can, therefore be killed” (139). In this respect, his argument foregrounds the integration of medicine and politics as an “essential characteristic of modern biopolitics” (143). Medicine is incorporated into the functions and organs of the state, and the physician and the sovereign, as he puts it, “seem to exchange roles” (143) in the determination and production of bare lives.
Agamben’s figure of homo sacer is now a fixture in contemporary theoretical debate, certainly within the fields of post-colonial and holocaust studies, and it speaks powerfully to the plight of the interned and dispossessed in the prison camps of Abu Ghraib and Guantanamo Bay (Kohn). However, the reduction of the concepts of biopower and biopolitics to the thanatopolitical logic of the death camps is deeply problematic primarily because of its totalising endeavour to subsume all instances of the individual’s interaction with the regulatory frameworks of the state within this paradigm. “We must admit”, he notes, “that we find ourselves virtually in the presence of the camp every time such a structure is created, independent of the kinds of crime that are committed there and whatever its denomination and specific topography” (174).
This strikes me as an unhelpful generality in any attempt to work through the distinctions between say the Rwandan genocide and the internment of Albanian immigrants in Bari in 1991 (cited by Agamben as an instance of the “materialisation of the state of exception” (174)). It is even less helpful as soon as we leave the domain of overtly aggressive expressions of biopower to explore more subtle interactions in the field of medical ethical decision-making and the legal processes that underpin it. The twentieth century does indeed witness the integration of medical institutions into the operations of the state as Agamben suggests, and there are far too many examples of the abuse of this in instances of medical complicity in torture, genocide and most recently the obscene trade in organs ‘harvested’ from executed prisoners in China. However, Agamben’s model is insufficiently nuanced to address the role of the state in the context of complex ethical debates around, say, the pre-implantation genetic testing of embryos, euthanasia for the terminally ill or the termination of life support for someone in a persistent vegetative state. These are all examples of the ‘materialisation’ of thresholds that seek to evaluate life, yet they are not, to my mind, straightforwardly continuous with, nor reducible to the thanatopolitics of the camp. As Rose and Rabinow conclude in their critique of Agamben’s formulation of biopower, “to analogise all other instances large and small where life or the body or health is at stake to this one exemplar is to do a profound and politically dangerous disservice to critical thought – for the essence of that thought must be its capacity to make distinctions that can facilitate judgement and action”(6).
Agamben’s thesis leaves no conceptual space in which to recognise the potential for contestation within those very institutions and practices he posits as central pillars of the state’s biopolitical agenda. Legal frameworks are evoked to challenge as well as to determine the thresholds beyond which life is deemed to be without value or ‘worth living’, and those engaged in both medical research and debates as to its ethical implications are not necessarily collusive with the interests of the state bodies that often fund such work. More to the point, his vision of a growing bio-political nightmare is based upon the primacy of the nation state as the place of sovereign decision-making. However, one of the defining characteristics of contemporary biological citizenship is precisely its ‘transnationality’. Global pharmaceutical corporations, the internet and the transnational practices of human rights advocacy – three key players in this scenario – operate across rather than within national spaces. That is not to say, of course, that access either to medicine, the internet or legal representation is evenly distributed across nation states, far from it.
In mapping the contours of contemporary biological citizenship, Novas and Rose are at pains to differentiate it from the racialised, nationalised and eugenic forms that characterise earlier intersections of biological and medical discourse with political and philosophical categorisations of the citizen. They identify a range of ‘differences’ between earlier eugenicist and racialised forms and contemporary biological citizenship – chiefly, different modes of public engagement with practices of health education and personal responsibility, different interactions with new technologies for bodily improvement in both its most superficial and most fundamental forms through cosmetic surgery to gene therapy, and changing ideas about the role of biology in relation to questions of human worth (3). In terms of the latter, participation in a dialogue about the value of some lives over others has become an inescapable feature of contemporary life. Practices of pre-implantation embryo selection, the implications and import of genetic testing, the use of foetal stem cells and life support technologies are all issues that test the limits of traditional ethics as scholars such as Peter Singer (1994) have pointed out.
The ethical dilemmas that present themselves in this context are certainly not easily resolved with reference to some deeply embedded eugenicist or racial agenda. It is difficult to argue that those who test positively for the combination of genes that determine early onset Alzheimer’s disease or Huntington’s Chorea are simply victims of the logic of eugenicism, should they decide against having children in light of the current incurability of these conditions. Genetic knowledge often outstrips the capacities of contemporary medicine to treat particular diseases and conditions effectively. It is, in many respects, a poison chalice in these contexts for all that it is simultaneously touted as the means by which cures will be found. In confronting this technology as a matter of necessity, people are obliged to take on new responsibilities and often intolerable burdens. Certain combinations of genes are ‘death sentences’ as Charles Pierce puts it (95). Others as predisposing risk factors are “a blind walk through the conditional voice”, demanding that one address the possibility of dying a particular death and suffering in a particular way (95). My point here is simply that to reduce the problems to which genetics give rise to the perils of socially or racially motivated selection fails to address the nature of the difficulties with which people are increasingly faced.
Biosociality
Agamben’s conception of biopolitics describes a model of power that divests subjects of agency and a capacity for resistance. Bare lives can be “killed without the commission of a crime” precisely because they are excluded from political life and denied a ‘voice’ – they are merely biological entities. In this model, the threshold that distinguishes bare life from that which is legally protected is produced but not it seems contested. Yet what we witness today in the circulation of new biomedical knowledge and the development of biotechnologies is not, as Davis points out, the discursive production of a range of ‘docile bodies’, interpellated from ‘on high’, but the emergence of new and active social constituencies characterised by both a personal investment in, and critical engagement with the implications of this research (31). Rabinow coins the term ‘biosociality’ to describe the social formations that have emerged around particular conditions and diseases and emphasises the significant role these groupings have played in advocacy and lobbying for research funding, better support systems and so on (1996). While much of the knowledge that is circulated derives from medical professionals and the institutions of the mass media, these forms of knowledge production intersect with other kinds of information and advice derived from non-institutional personal contexts (Novas and Rose 13). The internet has played an increasingly important part in facilitating the forging of new communities upon a virtual and transnational terrain. Research findings and new treatments are publicised and discussed, personal experiences and practical advice is shared.
These sites of biosocial engagement involve an active interaction with biomedical research and often with a range of institutions, from the government bodies that license particular drugs, through to social services and welfare support. The circulation of information often serves to expose national and regional differences in the availability of particular drugs and interventions and to buttress arguments in favour of making particular treatments available to all. It also produces a body of well-informed ‘expert’ patients and caregivers who feel empowered to challenge the previously unassailable authority of the medical establishment, and to take their fights for, say, a particular drug to court. The recent outcry in the UK over the decision of the National Institute of Clinical Excellence (NICE) to withdraw donepezil (Aricept), galantamine (Reminyl), and rivastigmine (Exelon) as treatments for mild to moderate Alzheimer's disease for cost benefit reasons prompted a vast and vocal response from patient organisations, those with the disease and their families as well as medical professionals and the pharmaceutical companies responsible for the supply and marketing of the drugs. Indeed it became a national debate, drawing a vast swathe of people into a discussion about the allocation of resources and the meanings of cost and benefit in this context. The usually faceless NICE was forced to justify its decision in the face of the stories of individuals who had responded positively to the drugs and acute pressure from the pharmaceutical companies (motivated, of course, by rather different agendas). Biological citizenship in this example is far from passive but involves the formation of an active and campaigning constituency ready and willing to fight for their lives, for the enhancement and preservation of their own health and well-being.
Stories of individual experiences of particular diseases and conditions can be described as the ‘literary’ expression of biosociality, as one of the key cultural forms of biological citizenship. These kinds of texts or illness narratives often combine a narrative about living with an illness with reflections upon the wider implications of a particular condition or disease, effective and ineffective coping strategies, interactions with medical professionals and so on. In this respect, they are often approached as forms of ‘writing back’. (Frank, 1997). As John Wiltshire (1998) notes, they “always contain some measure of critique” of medical “modes of understanding”, and “often seek to criticise or scrutinise … encounters with medical professionals and simultaneously to explore those aspects of ‘patienthood’ and the body about which medicine itself is silent” (184). Illness narratives mediate the relationship between the individual experience of a particular disease or condition and medical knowledge and practice. In doing so, they firmly locate scientific discourse in relation to the scripting of personal, ‘lived’ experience. That is not to say that they offer some phenomenologically authentic expression of the experience of pain or suffering. How we understand and construe experience itself is, as Joan Scott has pointed out, mediated by available social and cultural narratives, and illness narratives are written texts that draw upon a range of literary and lifewriting conventions with greater and lesser degrees of subtlety and skill (Scott, 1992). However, in engaging with prevailing and emergent biomedical discourses from ‘below’ so to speak, they offer an important and often critical perspective upon these forms of knowledge, exploring their implications in relation to specific and concrete situations.
In the case of Alzheimer’s disease, there is a growing body of texts that reflect upon the familial, social and cultural implications of the disease from the perspective of those that live with its particular burdens. Unlike a purely physical ailment, the very nature of the disease gives rise to a peculiarly fraught and reflective body of work. The impact of Alzheimer’s upon memory, cognition, mood and behaviour raises profound questions about what it means to be a person. Indeed Alzheimer’s is one of the key diseases around which bioethical debates around personhood and its meanings take place. These debates turn upon the points at which we might construct the boundary between meaningful life and its dissolution, between the person (as the repository of meaning-making) and the human (as the biological entity). Models of mind and person that focus on the possession or non-possession of particular cognitive skills inevitably tend to present Alzheimer’s as a kind of social death wherein the person or the self is eradicated long before the physical death of the body by virtue of a testable loss of cognitive function. Illness narratives by both those in the early stages of the disease and by their relatives, loved ones, and carers engage with precisely these questions from an individual perspective. First person narratives in particular have played an important role in cautioning against the ease with which some have described those with Alzheimer’s as ‘living corpses’ or the ‘living dead’. By their very nature these texts assert the presence of a living, thinking and desiring being. The illness narrative, in this respect, has actively problematised the emphasis placed upon bodily and mental ‘function’ in medical discourse. These kinds of texts demand that we consider other ways of construing personhood; that we depart from the deficit thinking that dominates medical models of disability. In their exploration of the lived and shared experience of disease, these texts also inscribe relational models of subjectivity that foreground our embedding in a range of familial, social and cultural narrative frameworks. That is to say, they strongly assert that identity is not reducible to cognitive function alone, but the product of a set of relationships that can sustain what remains of the person despite cognitive loss.
The experience of Alzheimer’s prompts sustained reflection upon the personal and cultural significance of memory loss. Alzheimer’s illness narratives are often acts of memorial reconstruction, attempts to retrieve and to salvage lost personal and familial histories in the face of their erosion in the mind of the individual with the disease. It is one of the paradoxes of Alzheimer’s life-writing that the disease actively prompts intense memory work in the way that other incurable conditions do not. It is a simple fact that our memories die with us, but Alzheimer’s intensifies our recognition of this truth. It is no surprise that at the level of the cultural imaginary, a character with Alzheimer’s often becomes a means of focusing upon the histories of the displaced, the migrant and the exiled. Its destruction of memory serves to focus upon the vulnerability of those histories and heritages that exist outside those public discourses of official historiography. Thus, among others, Elie Wiesel’s The Forgotten sees the narrative reconstruction of the Second World War experiences of a Jewish man in New York in the early stages of dementia. Linda Grant’s Remind Me Who I Am Again seeks to retrieve the unspoken history of her family’s Jewish heritage. Amy Tan’s The Bonesetter’s Daughter reconstructs the previously unspoken history of the narrator’s mother’s experiences in China.
In these illness narratives, cultural memory is significant not only because of the recognition that a heritage that depends upon familial life narratives is so easily lost, but also because it is that heritage of shared stories that enables the preservation of personhood or identity despite cognitive loss. These stories make sense of the person with dementia in terms of their position within a family and within a range of shared personal and cultural stories. For the children of those with the disease, these acts of retrieval serve simultaneously as forms of self-preservation in grounding their own identities in a web of stories and recollections.
At the same time, a diagnosis of Alzheimer’s necessarily impacts upon the ways in which heritage and family are understood. Knowledge of its genetic components disturb the conventional meanings of heritage, and any straightforward embracing of one’s familial history as that which nurtures and sustains particular kinds of identity. That one may inherit more than stories, culture and disposition from one’s parents is a recurrent theme in Alzheimer’s memoirs. Ways of life become ways of dying. Genealogical heritage recast in genetic terms becomes a curse, the site of the undoing of identity as much as its foundation. Children are forced to confront the possibility of their own cognitive and memory losses in those of their parents. The fictions of an inviolable selfhood are disturbed not simply in the organic damage wrought by the disease itself but in the dislocation of familial relationships which occurs when parents cease to recognise their own children and children are forced to re-orient their own sense of self in the face of this violation of foundational inter-subjective relationships. This state of affairs is brilliantly conveyed in the title of Linda Grant’s memoir, Remind Me Who I am Again? This phrase conveys her mother’s cognitive loss through her dementia and Grant’s own desire, provoked by the loss, to construct a narrative of her family’s history and her cultural heritage; a desire to “scramble among the ruins of my mother’s memory in search of my past” (28). Memory loss here – as in many other examples – provokes intense memory work and a sustained questioning of the nature and reliability of any act of recall and its relationship to one’s sense of self. Indeed, this uncertainty – ontological and epistemological – is encapsulated in the question mark that frames the text. ‘Remind me who I am, again?’ which, for Grant is a question, and for her mother an unanswerable plea, is that which simultaneously connects the shared history of mother and daughter, and speaks of their separation in the slow process of her mother’s decline. Yet it also haunts the text as a question that Grant may one day ask in the same manner as her mother, a sign of the potential undoing of her own sense of identity.
It is this recognition of the ambivalence of notions of identity and familial heritage in the age of the genome that underpins Charles Pierce’s memoir Hard to Forget, an account of his family’s relationship to AD. The title itself points to one of the ironies of his relationship to the disease that has taken his grandmother, his father, his four uncles and his aunt. Pierce cannot ‘forget’ Alzheimer’s however much he might hope to do so. For as much as forgetting is presented as desirable, as that which would signify liberation from the ‘family disease’, it is also synonymous with the disease itself. The unrelenting presence of AD in his life demands that he remember everything as a kind of protective spell against the real possibility of his own loss of memory. Memory stands between him and the likelihood that he has inherited this particular way of death. The insidious nature of Alzheimer’s further compounds this anxiety, as to forget even the smallest thing is a harbinger of the potential to forget everything. As he puts it:
For years, I have been a walking trove of random knowledge, but I’ve come not to believe in the concept of trivia. I do not believe that anything you can remember can be truly useless because I have seen memory go cold and dead … Not to remember is to begin to die, piecemeal, one fact at a time. (xx)
For Pierce to forget is truly hard, impossible even, because so much is at stake in the capacity to remember. In this sense, Alzheimer’s becomes an integral and inescapable part of his own identity, circumscribing every interaction and every instance of forgetfulness. He is possessed by the spectral presence of dementia, always already on the brink of dying “one fact at a time”.
The significance of the intransigent presence of this particular way of dying in the midst of his life is reflected in the narrative structure of the text. In formal terms, Pierce eschews the primarily auto/biographical concerns of the conventional illness narrative in order to explore the ways in which Alzheimer’s disease, scientific and medical research, and his own familial history become ‘tangled’ up with one another. As he puts it, “Breakthroughs. Discoveries. Science and myself. Tumbling into one another until they merge into memory” (190). He interweaves various narratives: a story about his Irish cultural heritage and about the Diaspora that sees the migration of his family from County Kerry to Massachusetts; the story of his father’s illness and death from Alzheimer’s; an account of the history of genetic research, of Alzheimer’s itself, and of the race to identify the genetic components of the late-onset form of the disease; and a narrative about his own personal journey through various communities and families affected by dementia and his quest to reconcile himself to his family’s disease. These narratives interrupt one another in a contrapuntal fashion. Particular stories are left suspended and picked back up at different points and the chronology of particular narratives is disrupted as if to convey the memorial and temporal dislocations wrought by the disease itself. His description of his father’s increasingly disordered relationship to the world as “Beckett squeezed through some dimensional wormhole codesigned by Ray Bradbury and the Marx Brothers” (xi) structures the text itself, reflecting his own troubled relationship to the disease and to its place in his family’s history.
The complex relationship between the different narrative strands points to the pressures that this inescapable engagement with Alzheimer’s places upon conventional memorial practices. Pierce cannot tell his father’s story without reflecting upon his own fraught relationship to the disease. He cannot make sense of his death without engaging with those medical and genetic discourses that identify its pathological characteristics and familial trajectory. He cannot engage with any of this without thinking about his children and their potential inheritance. The boundaries between memoir, biography and autobiography fold into each other to produce a literature of relational identity. Individual life narratives are entirely tangled up with one another historically, culturally and genetically: “Everything that touched upon the disease touched upon me: the headlong research and the white-hot rivalries; the people studying the disease and the people in which it is studied” (38). Describing his family’s story as “blues” from Mendel’s xylophone, the text moves between the particularity of his family’s story and numerous other Alzheimer’s stories; between the diversity of individual responses to the disease and the implications of epidemiological predictions of a population in which millions of people will develop AD; between the biographical and the scientific, the historical and the contemporary. “Disjointed and disrhythmic” (113), the stories of individuals and families struggling with the disease are set in a kind of dialogical tension with Pierce’s lucid explanations of the ‘hard science’ of genetic research. The disjunction between the languages of auto/biography and genetics is mediated by his account of the particular dispositions of the scientists involved, their personalities and ambitions. Far from taking place in some rarefied sphere beyond financial and personal interest, genetic research is contextualised as an occasionally dirty struggle between rival groups. The unseemly competition between researchers vying to establish the genetic components of the disease, is contrasted with the desperate pursuit of answers on the part of relatives and caregivers. In the simple juxtaposition of narratives, Pierce’s text refuses to forget the human objects of both the disease and the research that seeks to explain it.
The country of my disease
The dominant metaphor that Pierce develops through the text is that of Alzheimer’s as a terrain. He refers throughout to “the country of my disease”, describing it in the preface as “a place to be explored, with paths to follow through shadows and fog toward the dim light of a distant morning” (x). This particular figure engages both the spatial and temporal dimensions of identity. AD is imagined as both a place he inhabits and as a kind of journey toward understanding and accommodation through the darkest places of his psyche. It is both within and without him, the landscape and inscape of his narrative identity:
“Here be dragons,” the old cartographers warned, and everyone believed it, so they stayed where they were. Then one day someone decided to set out in their boat and look the dragons in the eye, and it turned out that the places where the dragons be was only Long Island. I had my own dark places and I believed in the dragons. Finally I went there to see what I could find. (xi)
His reference to medieval cartography, to an uncharted terrain full of terrifying monsters, is significant. It encompasses a sense of the atavistic nature of his anxieties and his investment in the notion that knowledge, both personal and scientific, will cast the “dim light of morning” over the shadows of fear and ignorance. At the same time, it is clear throughout that such knowledge produces its own kinds of dragons in the shape of the scientific endeavour to identify genes and genetic predispositions that firmly locate these ‘dark places’ within, rather than without the individual. His journey of discovery reveals only that the dragons are to be found right there, at home on Long Island. This ironic spin on the quest narrative speaks to Pierce’s ambivalent relationship to the scientific explanations he seeks. This kind of knowledge, as he points out later in the text, raises complex and unprecedented legal, ethical and emotional questions for which there are no ready answers: “Do you want to know? Does your insurance company get to know? Does your boss get to know? Does the government get to know? Are you the grandchild of a victim, and do you want to know before you embark on a career as a neurosurgeon, which would take up a lot of time? …” (180). Ultimately Pierce decides not to be tested for “definite confirmation of a probability” (181). However, the stories he tells about his past and the future he imagines for himself and his children are infiltrated by his knowledge of the risk of Alzheimer’s and his uncertainty about what he’d “do” (181) with his test results.
Genetic research constitutes the terrain upon which such a choice and its attendant dilemmas come to be articulated. In bringing together the stories of a range of different families from different cultural backgrounds, Hard to Forget suggests that this emergent form of knowledge about Alzheimer’s produces a new kind of map and new forms of identity that are forged on the basis of genetic predisposition rather than the traditional nexus of class, culture, ethnicity and so on. Pierce explores the powers of genetic discourse to produce new constituencies based both upon the lived experience of particular conditions and a sense of a shared fate, of the capacity of genetic knowledge to produce a society of ‘specimens’. Describing the influx of people to the Alzheimer’s programme at Duke University, he notes:
People who came to be diagnosed stayed to become part of the research. They talked to the social workers. They took the tests. They were evaluated, all of them – the fathers and the mothers, the brothers and the sisters – and the grandparents too. Their lives were rebuilt for the purpose of studying their destruction, the way investigators study wrecked airplanes. And when they died, their brains came out, were laid on the table, sliced and sectioned, stained and studied. The brains were stored in a cool place down the hall. (84)
I am a specimen. So is my father, who is a brain down the hall. So is my son, who knew his grandfather, but never really knew him. So is my daughter, who never knew him at all. For all practical purposes, for all the good it will ever do me, I already know all I need to know. (173)
This idea that we are ultimately reducible to the grey matter enclosed within our skulls emerges throughout Alzheimer’s lifewriting. (Both Jonathan Franzen and Linda Grant draw upon the authority of neuro-scientific research to describe selfhood as consequential upon the functioning of the ‘lump of meat’ that is the human brain). When Pierce describes himself as “a specimen” he suggests that his identity is inseparable from the pathological signs of disease; that its meaning is to be found within the generic and classificatory forms of scientific enquiry. Modes of medical understanding have the final claims upon the disparate families who willingly flock to Duke to take their place as ‘brains down the hall’. Yet precisely as a consequence of this impossible performative enunciation – “I am a specimen” – Pierce simultaneously refuses to accept this form of knowledge as the only way in which selfhood should be construed. The stories he tells of individual families, of his own family’s migrant experience, of the peculiarities of people, implicitly expose the paucity of the kind of hyper-cognitive model that seeks to explain human identity with sole reference to the functioning or malfunctioning brain. The description of himself as a “specimen”, “sliced and sectioned, stained and studied”, attests to the violence that such a discourse wreaks upon its subjects and to the emotional consequences of having to imagine oneself in this manner, denuded of any defining cultural, familial and social moorings. All is truly forgotten, it seems, in a narrative trajectory that culminates in the path lab. However, “genes,” as Pierce notes in his preface, “produce not only life, but a life” (xiv). The classificatory endeavours of science are unable to account for the particularity of people’s lives. It is precisely this sense of difference and diversity in the face of the shared experience of Alzheimer’s that Pierce’s text sets out to retrieve and record.
Conclusion: Of Disciplines and Thinking about Dementia
There is a long-standing historical tradition that separates the epistemic cultures of medicine and the humanities, the former characterised by correlation and explanation, and the latter by interpretation or a ‘hermeneutic approach’ (Taylor). It is often the case that in critiques of medical discourse, this dichotomy (correlation versus interpretation) is subject to an ethical evaluation wherein ‘bad’ medicine is contrasted with ‘good’ soft ‘psy’ and social scientific interpretation (Leibing, 242). In the case of Alzheimer’s disease, this formulation of an absolute dichotomy between ‘hard’ medical science and the soft ‘psy’ and social sciences has become the key ground upon which the ethical shortcomings of medicine have been asserted and admonished by those advocating the extension of personhood to those suffering severe cognitive impairment. Medical discourse, according to Tom Kitwood, among others, is instrumental in producing a malignant social environment that actively colludes in the disabling of the person with dementia through their reduction to the signs and symptoms of the disease (Kitwood; Lyman; Gubrium).
It is true enough that in disciplinary terms, these two ‘gazes’ – the scientific and the social scientific – are unable to meet on the same ground, constituting their objects of study in distinct and mutually exclusive ways. However, I believe we need to take a more flexible and nuanced approach to the interactions between these different forms of knowledge and ways of construing subjectivity. The logic of academic discourse demands their separation – outside of this sphere I think we see a messier and more entangled set of relationships. My engagement with contemporary writing about Alzheimer’s convinces me that the construction of medical discourse within this kind of social scientific critique is unhelpful for a number of reasons: firstly, it conceals a more enmeshed history between these two discursive traditions; and secondly, the supposition that medical discourse is somehow ‘ontologically bad’ limits an informed and critical engagement with its enabling as well as its disabling effects (Leibing 247). It also, I believe, simplifies the complex and often contradictory ways in which we engage with forms of medical knowledge.
What interests me about Hard to Forget is the way in which Pierce is able to ‘think’ or to hold two distinct and opposing forms of self-knowledge (and knowledge about the self) in a kind of critical tension with one another. There is a clear investment in the truth claims of medical and scientific discourse in the text and it is this that underpins the active identification with a biographical narrative that culminates in the erosion of identity in the pathological sample. Alzheimer’s disease is integral to his identity. Yet this co-exists with another model of selfhood –one in which particular stories and particular personalities matter intensely. In negotiating a relationship with the family disease, Pierce articulates a kind of double subjectivity. His narrative moves between two discursively incompatible ways of thinking about the self, akin to the Escher print that yields a different image depending on the way in which we look at it. In this respect, his illness narrative enacts a kind of fraught interdisciplinary dialogue, of a kind that is precluded by the disciplinary paradigms in which scholars in the humanities and sciences work. It is perhaps here too that we see a struggle to accommodate and develop a liveable relationship with the fact of human fragility. The memoir traces the process by which impairment becomes integral to Pierce’s self-identification, not simply some exterior nightmare but part of an interior landscape, a constitutive feature of his sense of home, self and belonging:
I went out into the country of my disease and people were living there still, and so I found myself living my own story again … My story, my family’s story, began to entwine itself with what I was learning about Alzheimer’s until what I discovered became inseparable from what I had experienced. I went out into the country of the disease, and I found myself coming home again. (xv)
Pierce’s acknowledgement of the centrality of AD to his life is a painful and powerful recognition of Davis’s argument that impairment is the norm – his home is in the ‘country of the disease’, and the disease is integral not incidental to his own story and that of his family. It is part of him. This is emphasised in the conclusion of the memoir in which Pierce describes returning to Ireland. This journey to reconnect with his Irish heritage involves a meeting with his cousin John who, it turns out, has Down’s syndrome. Earlier in the text, Pierce’s account of the search for the genetic components of AD charts the significance of the complex connection between chromosome 21 (inherited in triplicate by people with Down’s syndrome) and Alzheimer's. The narrative choice to conclude his memoir with this meeting and with a return to meet his family in Kilflynn, fuses the twentieth century story of a disease and its genetics with the familial and cultural narratives of the Irish diaspora. AD, he suggests, cannot be excised or annexed from this history for it is there at what he describes as “the beginning of things” (195).
Notes
[1] Dr. Lucy Burke, Department of English, Manchester Metropolitan University. The research for this essay was supported by the Arts and Humanities Research Council (AHRC) research leave scheme. I am very grateful to Vaidehi Ramanathan for her advice and feedback on this essay.
Works Cited
Agamben, Giorgio. Homo Sacer: Sovereign Power and Bare Life. trans. Daniel Heller-Roazen. Stanford: Stanford UP, 1998.
Cohen, Lawrence. “Introduction: Thinking about Dementia.” Thinking about Dementia: Culture, Loss, and the Anthropology of Senility. Ed. Annette Leibing and Lawrence Cohen. New Jersey: Rutgers UP, 2006. 1-22.
Davis, Lennard J. Bending Over Backwards: Disability, Dismodernism and Other Difficult Positions. New York: New York UP, 2002.
Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: U of Chicago P, 1995.
Foucault, Michel. Ethics: Essential Works of Foucault 1954-1984. Ed. Paul Rabinow. Harmonsworth: Penguin, 2000.
Franzen, Jonathan. “My Father’s Brain.” How to be Alone. London: Fourth Estate, 2002. 7-38.
Gattaca. Dir. Andrew Niccol. Columbia Pictures Corporation, 1997.
Gilroy, Paul. Between Camps: Nations, Culture and the Allure of Race. London: Allen, 2000.
Grant, Linda. Remind Me Who I Am, Again? London: Granta, 1998.
Gubrium, J. F. Oldtimers and Alzheimer’s: The Descriptive Organisation of Senility. Greenwich, CT: JAI Press, 1986.
Habermas, Jurgen. The Future of Human Nature. Cambridge: Polity, 2003.
Hardt, Michael and Antonio Negri. Empire. Mass: Harvard UP, 2000.
Hughes, Julian C., Stephen J. Louw, and Steven R. Sabat. Dementia: Mind, Meaning, and the Person. Oxford: Oxford UP, 2006.
Kitwood, T. Dementia Reconsidered: the Person Comes First. Buckingham: Open UP, 1998.
Kohn, Margaret. “Bare Life and the Limits of the Law.” Theory & Event 9.2 (2006): n. pag.
Leibing, Annette. “Divided Gazes: Alzheimer’s Disease, the person within and death in life.” Thinking about Dementia: Culture, Loss, and the Anthropology of Senility. Ed. Annette Leibing and Lawrence Cohen. New Jersey: Rutgers UP, 2006. 240-68.
Lyman, K. A. “Living with Alzheimer’s Disease; the Creation of Meaning Among Persons with dementia.” Journal of Clinical Ethics 9.1 (1998): 49-57.
Pierce, Charles. Hard to Forget: An Alzheimer’s Story. New York: Random House, 2000.
Rabinow, Paul. Essays on the Anthropology of Reason. Princeton NJ: Princeton UP, 1996.
---. French DNA: Trouble in Purgatory. Chicago: U of ChicagoP, 1999.
Rabinow, Paul and Nikolas Rose. “Thoughts on the Concept of Biopower Today.” Biosocieties 1. (2006): 195-217. 1 Feb. 2008 <http://www.molsci.org/research/publications_pdf/Rose_Rabinow_Biopower_Today.pdf>.
Rose, Nikolas and Carl Novas. “Biological Citizenship.” 2002. 10 Aug. 2007 <http://www.lse.ac.uk/collections/sociology/pdf/RoseandNovasBiologicalCitizenship2002.pdf>.
Scott, Joan Wallach. “Experience.” Feminists Theorize the Political. Ed. Judith Butler and Joan Wallach Scott. London: Routledge, 1992. 22-40.
Singer, Peter. Rethinking Life and Death: The Collapse of Our Traditional Ethics. Oxford: Oxford UP, 1994.
Tan, Amy. The Bonesetter’s Daughter. New York: Ballantine, 2002.
Taylor, Charles. Sources of the Self: The Making of the Modern Identity. Mass: Harvard UP, 1992.
The Island. Dir. Michael Bay. Dreamworks SKG, 2005.
Waldby, Catherine. “Stem cells, tissue cultures and the production of Biovalue.” Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 6.3 (2002): 305-25.
Wiesel, Elie. The Forgotten. New York: Knopf, 1995.
Wiltshire, John. “The patient writes back: bioethics and the pathography.” Renegotiating Ethics in Literature, Philosophy, and Theory. Ed. J. Adamson, R. Freadman, and D. Parker. Cambridge: Cambridge UP, 1999. 181-200.
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