Life, Death and the Boundaries of the Person
Ivan Illich

Source: NPQ: New Perspectives Quarterly, Winter94, Vol. 11 Issue 1

DNA maps and genetic cleansing; embryo cloning and euthanasia; organ transplants and physician-assisted suicide--never before have the traditional boundaries of life and death become so blurred. Never before has science intruded so pervasively into the sanctuary of the person. Where once only angels would tread, the medical establishment now treats. Are we closer to the secret of life, or just farther from God and nearer to the dust? In this symposium NPQ takes an anxious look at the new frontiers of man's fate.

Life is not Sacred

BREMEN, GERMANY -- Physicians in the Hippocratic tradition were pledged to restore the balance -- or "health" -- of their patient's constitution but forbidden to use their skills to deal with death. They had to accept nature's power to dissolve the healing contract between the patient and his physician.

When the Hippocratic signs indicated to the physician that the patient had entered into agony, the "atrium between life and death," he had to withdraw from what was now a deathbed. Both quickening -- coming alive in the womb -- and agony -- the personal struggle to die -- defined the extreme boundaries between which a subject of medical carecould be conceived.

In our world, these boundaries have been obliterated. By the early 20th century, the physician came to be perceived as society's appointed tutor of any person who, having been placed in a patient role, lost his own competence.

Physicians are taught today to consider themselves responsible for lives from the moment the egg is fertilized through the time of organ harvest. They have become the socially responsible professional manager not of a patient, but of a life from sperm to worm. Physicians have become the bureaucrats of the brave new biocracy that rules from womb to tomb.

In societies confused by the technological prowess that enables us to transgress all traditional boundaries of coming to life and dying, the new discipline of big-ethics has emerged to mediate between pop-science and law. It has sought to create the semblance of a moral discourse that roots personhood in the "scientific ability" of bioethicists to determine who is a person and who is not through qualitative evaluation of the fetish, "a life. "

What I fear is that the abstract, secular notion of "a life" will be sacralized, thereby making it possible that this spectral entity will progressively replace the notion of a "person" in which the humanism of Western individualism is anchored. "A life" is amenable to management, to improvement and to evaluation in a way which is unthinkable when we speak of "a person." The transmogrification of a person into "a life" is a lethal operation, as dangerous as reaching out for the tree of life in the time of Adam and Eve.

The churches -- one of the most important agencies for defining moral issues in public life -- bear a particular responsibility as a lost civilization turns to them for guidance on such issues as abortion, euthanasia, organ transplants, embryo cloning and eugenics.

"A life" is the most powerful idol the church has had to face in the course of its history. More than the ideology of empire or feudal order, more than nationalism or progress, more than gnosticism or Enlightenment, the acceptance of "life" as a God given reality lends itself to a new corruption of the Christian faith.

The Christian West has given birth to a radically other kind of human condition unlike anything before it. Only within the matrix which Jacques Ellul calls the "technological system" has this new type of human condition come to full fruition. A new role opens for mythmaking, moralizing, legitimating institutions, a role which cannot quite be understood in terms of old religions, but which some churches rush in to fill.

The new technological society is singularly incapable of generating myths to which people can form deep and rich attachments. Yet, for its rudimentary maintenance it needs agencies which create and legitimate fetishes to which epistemic sentimentality can attach itself.

We seem to need a Linus blanket, some prestigious fetish that we can drag around to feel like defenders of sacred values. "Life" has become this blanket: it has come to constitute an essential referent in current ecological, medical, legal, political and ethical discourse. Consistently, those who use it forget that the notion has a history. It is a Western notion, ultimately the result of a perversion of the Christian message.

When the Lord announced to Martha "I am Life," he did not say "I am a Life." He says "I am Life" tout court. This Life has its historical roots in the revelation that one human person, Jesus, is also God. This one Life is the substance of Martha's faith. In the Christian tradition, we hope to receive this Life as a gift; and we hope to share it. We know that this Life was given to us on the Cross and we cannot seek it except on the via crucis.

This Life is gratuitous, beyond and above having been born and living. But, as Augustine and Luther constantly stress, it is a gift without which being alive would be dust.

Life in the Christian tradition is personal to the point of being one person, both revealed and promised in John 19. It is something profoundly other than the life which appears as substantive in all the headlines about abortion or euthanasia in American newspapers.

At first sight, the two have nothing in common. On the one side, the Bible says: Emmanuel, Godman, Incarnation. On the other, the term is used to impute substance to a process for which the physician assumes responsibility, which technologies prolong and atomic armaments protect; a substance which has standing in court, can be wrongfully given, and about whose destruction without due process or beyond the needs of national defense or industrial growth the so-called pro-life organizations are incensed.

However, at closer inspection, life as a property, as a value, a national resource, a right, is a Western notion which shares its Christian ancestry with other key verities defining secular society.

The notion of a human life as a distinct entity which can be professionally and legally protected has been torturously constructed through a legal-medical-religious-scientific discourse whose roots go far back into theology.

The emotional and conceptual connotations of life in Hindu, Buddhist or Islamic traditions are utterly distinct from those evident in the current debate on this subject in Western democracies.

In the United States, the politicized pro-life movements are sponsored mainly by Christian denominations.

It is for this reason that it is mainly up to the churches to de-mystify "life." The Christian churches now face an ugly temptation: to cooperate in the social creation of a fetish which, in a theological perspective, is the perversion of revealed Life into an idol.

The History of a Life

Biblical scholars are well aware of the limited correspondence between the Hebrew word for blood, dam, for breath, ruah, and the Greek term we would render as soul, namely, psyche. Neither comes anywhere near the meaning of the substantive, life. The concept of life does not exist in Greco-Roman antiquity: bios means the course of a destiny and zoe something close to the brilliance of aliveness. In Hebrew, the concept is utterly theocentric, an implication of God's breath.

Life as a substantive notion appears two thousand years later, along with the science that purports to study it. The term biology was coined early in the 19th century by Jean-Baptiste Lamarck. He was reacting to the baroque progress in botany and zoology which tended to reduce these two disciplines to the status of mere classification. By inventing a new term, he also named a new field of study, "the science of life."

Lamarck's genius confronted the tradition of distinct vegetable and animal ensoulment, along with the consequent division of nature into three kingdoms: mineral, vegetable and animal. He postulated the existence of life that distinguishes living beings from inorganic matter not by visible structure but by organization. Since Lamarck, biology searches for the "stimulating cause of organization" and its localization in tissue cells, protoplasm, the genetic code or morphogenetic fields.

"What is life?" is, therefore, not a perennial question, but the pop-science counterfoil to scientific research reports on a mixed bag of phenomena such as reproduction, physiology, heredity, organization, evolution and, more recently, feedback and morphogenesis.

Life appears during the Napoleonic wars as a postulate which is meant to lead the new biologists beyond the competing descriptive studies of mechanists, vitalists and materialists. Then, as morphological, physiological and genetic studies became more precise toward the middle of the 19th century, life and its evolution become the hazy and unintended by-products reflecting in ordinary discourse an increasingly abstract and formal kind of scientific terminology.

THE DEATH OF NATURE | A thread which runs back to Anaxagoras (500-428 BC) links a number of otherwise profoundly distinct philosophical systems: the theme of nature's aliveness. This idea of nature's sensitive responsiveness found its constant expression well into the 16th century in animistic and idealistic, gnostic and hylomorphic versions. In these variations, nature is experienced as the matrix from which all things are born. In the long period between Augustine and Scotus this birthing power of nature was rooted in the world's being contingent on the incessant creative will of God.

By the 13th century, and especially in the Franciscan school of theology, the world's being is seen as contingent not merely on God's creation, but also on the graceful sharing of his own being, his life. Whatever is brought from possibility (de potentia) into the necessity of its own existence thrives by its miraculous sharing of God's own intimacy, for which there is no better word than -- His life.

With the scientific revolution, contingency-rooted thought fades and a mechanistic model comes to dominate perception. Caroline Merchant argues that the resulting "death of nature" has been the most far-reaching event in changing men's vision and perception of the universe. But it also raised the nagging question: How to explain the existence of living forms in a dead cosmos? The notion of substantive life thus appears not as a direct answer to this question, but as a kind of mindless shibboleth to fill a void.

LIFE AS PROPERTY | The ideology of possessive individualism progressively affected the way life could be talked about as a property. Since the 19th century, the legal construction of society increasingly reflects a new philosophical radicalism in the perception of the self. The result is a break with the ethics which had informed western history since Greek antiquity, clearly expressed by the shift of concern from the good to values. Society is now organized on the utilitarian assumption that man is born needy, and needed values are by definition scarce. It becomes axiomatic that the possession of life is then interpreted as the supreme value. Homo economicus becomes the referent for ethical reflection. Living is equated with a struggle for survival or, more radically, with a competition for life. For over a century now it has become customary to speak about the "conservation of life" as the ultimate motive of human action and social organization.

Today, some bioethicists go even further. While up to now the law implied that a person was alive, they demand that we recognize that . . . there is a deep difference between having a life and merely (sic!) being alive. The proven ability to exercise this act of possession or appropriation is turned into the criterion for personhood and for the existence of a legal subject.

During this same period, homo economicus was surreptitiously taken as the emblem and analogue for all living beings. A mechanistic anthropomorphism has gained currency. Bacteria are imagined to mimic "economic" behavior and to engage in internecine competition for the scarce oxygen available in their environment. A cosmic struggle among ever more complex forms of life has become the anthropic foundational myth of the scientific age.

LIFE AS ECOLOGY | Ecology can mean the study of correlations between living forms and their habitat. The term is also and increasingly used for a philosophical way of correlating all knowable phenomena. It then signifies thinking in terms of a cybernetic system which. in real time is both model and reality: A process which observes and defines, regulates and sustains itself. Within this style of thinking, life comes to be equated with the system: It is the abstract fetish that both overshadows and simultaneously constitutes it.

Epistemic sentimentality has its roots in this conceptual collapse of the borderline between cosmic process and substance, and the mythical embodiment of both in the fetish of life. Being conceived as a system, the cosmos is imagined in analogy to an entity which can be rationally analyzed and managed.

Simultaneously, this very same abstract mechanism is romantically identified with life and spoken about in hushed tones as something mysterious, polymorphic, weak, demanding tender protection.

In a new kind of reading, Genesis now tells how Adam and Eve were entrusted with life and the further improvement of its quality. This new Adam is potter and nurse of the Golem, his artificial creation.

In the sickening manufactured environment we have made for ourselves, health in the Hippocratic tradition has become an impossibility; balance has become hope-less.

The hope once symbolized in the mystery of the unborn has been corrupted; now there is only the legal entity of the fetus monitored on the sonogram. Agony, too, has been corrupted by the medicalization of death.

Dignity will not be found in the universal health care now demanded, but in hygienic autonomy and in a new found art of suffering and dying. In modern sickness I see the occasion for this discovery.

A History of Health

The concept of health in European modernity represents a break with the Galenic-Hippocratic tradition familiar to the historian. For Greek philosophers, "healthy" was a concept for harmonious mingling, balanced order. A rational interplay of the basic elements. He was healthy who integrated himself into the harmony of the totality of his world according to the time and place he had come into the world.

For Plato, health was a somatic virtue, and spiritual health, too, a virtue. In "healthy human understanding," the German language -- despite critiques by Kant, Hamann, Hegel and Nietzsche -- preserved something of this cosmotropic qualification. But since the 17th century, the attempt to master nature displaced the ideal of the health of a people.

This inversion gives the a-cosmic health created in this way the appearance of being engineerable. Under this hypothesis of engineerability, "health as possession" has gained acceptance since the last quarter of the 18th century. In the course of the 19th century, it became common sense to speak of "my body" and "my health."

In the American Declaration of Independence, the right to happiness is affirmed. The right to health materialized in a parallel way. In the same way as this happiness, modern-day health is the fruit of possessive individualism. There could have been no more brutal and, at the same time, more convincing way to legitimize a society based on self-serving greed. In a similarly parallel way, the concept of responsibility of the individual gained acceptance in formally democratic societies. Responsibility then took on the semblance of ethical power over ever more distant regions of society and ever more specialized forms of "happiness-bringing" service deliveries.

In the 19th and early 20th century, then, health and responsibility were still believable ideals. Today they are elements of a lost past to which there is no return. Health and responsibility are normative concepts which no longer give any direction. When I try to structure my life according to such irrecoverable ideals, they become harmful -- I make myself sick.

HEALTH IS A PLASTIC WORD | Health and responsibility have been made largely impossible from a technical point of view. This was not clear to me when I wrote Medical Nemesis, and perhaps was not yet the case at that time. In hindsight, it was a mistake to understand health as the quality of "survival," and as the "intensity of coping behavior."

Adaptation to the misanthropic genetic, climatic, chemical and cultural consequences of growth is now described as health. Neither the Galenic-Hippocratic representations of balance, nor the Enlightenment utopia of a right to "health and happiness," nor any Vedic or Chinese concepts of well-being, have anything to do with survival in a technical system.

"Health" as function, process, mode of communication; health as an orienting behavior which requires management -- these belong with those post-industrial conjuring formulas which suggestively connote much, but denote nothing that can be grasped. And as soon as health is addressed, it has already turned into a sense-destroying pathogen, a member of a word family which Uwe Poerksen calls plastic words, word husks which one can wave around, making oneself important, but which can say or do nothing.

The situation is similar with responsibility, although to demonstrate this is much more difficult. In a world which worships an ontology of systems, ethical responsibility is reduced to a legitimizing formality. The poisoning of the world is not the result of an irresponsible decision, but rather of our individual presence, as when traveling by airplane or commuting on the freeway, in an unjustifiable web of interconnections. It would be politically naive, after health and responsibility have been made technically impossible, to somehow resurrect them through inclusion into a personal project; some kind of resistance is demanded.

Instead of brutal self-enforcement maxims, the new health requires the smooth integration of my immune system into a socioeconomic world system. Being asked for responsibility is, when seen more clearly, a demand for the destruction of sense and self And this proposed self-assignment to a system stands in stark contrast to suicide. It demands self-extinction in a world hostile to death.

Precisely because I favor those renunciations which an a-mortal society would label suicide, I must publicly expose the idealization of "healthy" self-integration.

To demand that our children feel well in the world which we leave them is an insult to their dignity. Then to impose on them responsibility for their own health is to add baseness to the insult.

INCEDENT DEMANDS | In many respects, biological, demographic and medical research of the last decade, focusing on health, showed that medical achievements only contributed in an insignificant way to the medically defined level of health in the population. Secondly, studies have found that even preventive medicine is of secondary importance in this respect. Further, we now see that a majority of these medical achievements are deceptive misnomers, actually prolonging the suffering of madmen, cripples, old fools and monsters.

Therefore, I find it reprehensible that the self-appointed health experts now emerge as caring monitors who, with their slogans, put the responsibility of suffering onto the sick themselves. In the last 15 years, propaganda in favor of hypochondria has certainly led to a reduction in smoking and butter consumption among the rich and to an increase in their jogging.

But throughout the world, propaganda for medically defined health coincided with an increase in misery for the many. In India. Banerji has demonstrated how the importation of Western thought undermined the hygienic customs of the majority and solidified advancement of elites.

Twenty years ago, Hakin Mohamed Said, the leader of the Pakistan Unani, spoke about medical sickening through the imposition of a Western concept of health. What concerned him was the corruption of the praxis of traditional Galenic physicians, not by Western pharmacopeia so much as by a Western concept of health which sees death as the enemy. This hostility to death -- which is to be internalized along with personal responsibility for health -- is why I regard the slogan of "my body, my health" as indecent.

LIFE AS BLASPHEMY | In recent times, as I discussed earlier, the representation of the substantive concept, "life," has prominently emerged. The physician was required to take responsibility for life. Around 1979, the quality of life was suddenly before us. Biomedicine discovered its competence over "life."

Studying the history of well-being, the history of health, it is obvious that with the arrival of life and its quality -- which was also called health -- the thread which linked that which is called health today with health in the past was broken. Health has become a scale on which one measures an immune system's fitness for living.

The reduction of a person to an immune system corresponds to the deceptive reduction of creation to a global system, Lovelock's Gaia. And in this perspective, responsibility ends up being understood as the self-steering of an immune system. As much as I would like to rescue for future use the word "responsible" -- a word that, as a philosophical concept, only appeared around 1920 -- to characterize my actions and omissions, I cannot do it. And this is true, not primarily because through this slogan for self-regulation of one's own "quality of life" sense is extinguished, management transfigured as beneficial, and politics reduced to feedback, but because God is thus blasphemed.

I ask you to pay careful attention to my form of expression. I am a Christian, but when I speak here about blaspheming God, I want to be understood as an historian, not as a theologian.

I have outlined my thinking. Longing for that which health and responsibility might have been in the recently arrived modernity I leave to romantics and drop-outs. I consider it a perversion to use the names of high-sounding illusions which cannot fit in the world of computer and media for the internalization and embodiment of systems and information theory.

Only if one understands the history of health and life in their historical interconnection is there a basis for the passion with which I call for the renunciation of "life." I completely agree with T. S. Eliot:

Where is the Life we have lost in living? Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information? The cycles of Heaven in twenty centuries Bring us farther from God and nearer to the Drust.

The concept of a life which can be reduced to a survival phase of the immune system is not only a caricature, not only an idol, but a blasphemy And seen in this light, desire for responsibility for the quality of this life is not only stupid or impertinent, it is a sin.

The Illusion of Responsibility

I can imagine no complex of controls capable of saving us from the flood of poisons, radiations, goods and services which sicken humans and animals more than ever before. What sickens us today is something altogether new. What determines the epoch since Kristallnacht is the growing matter-offact acceptance of a bottomless evil which Hitler and Stalin did not reach, but which today is the theme for elevated discussions on the atom, the gene, poison, health, and growth.

These are evils and crimes which render us speechless. Unlike death, pestilence, and devils, these evils are without meaning. They belong to a non-human order. They force us into impotence, helplessness, and powerlessness. We can suffer such evil, we can be broken by it, but we cannot make sense of it, cannot direct it.

There is no way out of this world. I live in a manufactured reality ever further removed from creation. And I know today what that signifies, what horror threatens each of us.

A few decades ago, I did not yet know it. At that time, it seemed possible that I could share responsibility for the remaking of this manufactured world. Today, I finally know what powerlessness is. I know that "responsibility" is an illusion.

In such a world, "being healthy" is reduced to a combination of the enjoyment of techniques, protection of the environment, and adaptation to the consequences of techniques, all three of which are, inevitably, privileges.

In order to live today, I must decisively renounce health and responsibility. Renounce, I say, not ignore or become resigned. I do not use the word to denote indifference. What I mean is that I must accept powerlessness, mourn that which is cone and renounce the irrecoverable.

Renunciation can free one from the powerlessness which robs me of my awareness. of my sense. But renunciation is not a familiar concept today. We no longer have a word for courageous, disciplined, self-critical renunciation accomplished in community -- but that is what I am talking about. I will call it askesis.

I would have preferred another word, for askesis today brings to mind Flaubert and Saint Antony in the desert -- turning away from wine, women and fragrance. But the renunciation of which I speak has very little to do with this.

The epoch in which we live is abstract and disembodied. The certainties on which it rests are largely sense-less. And their worldwide acceptance gives them a semblance of independence from history and culture. What I want to call epistemological askesis opens the path toward renouncing those axiomatic certainties on which the contemporary world view rests. I speak of convivial and critically practiced discipline. The so-called values of health and responsibility belong to these certainties. Examined in depth, one sees them as deeply sickening, disorienting phenomena. That is why I regard a call to take responsibility for my health as senseless, misleading, indecent, and, in a very particular way, blasphemous.

Hygienic Autonomy: A Manifesto

Many persons are confused today about something called "health." Experts prate knowingly about "health care systems." Some persons believe that without access to sophisticated and expensive treatments, people will be sick. Everyone worries about increasing costs. One even hears talk of a "health care crisis." I would like to say something about these matters.

First, I believe it necessary to assert the truth of the human condition: I suffer pain; I am afflicted with certain impairments; I will certainly die. Some undergo greater pain, some more debilitating disorders, but we all equally face death.

Looking around me, I see that we -- as people in other times and places -- have a great capacity to care for one another, especially in the moments of birthing, accidents and dying. Unless unbalanced by historical novelties, our households, in close cooperation with their surrounding communities, have been wonderfully hospitable, that is, generally adequate to care for the real needs of living, celebrating and dying.

In opposition to this experience, some of us today have come to believe that we desperately need packages, commodities, all under the label of "health," all designed and delivered by a system of professionalized services. Some try to convince us that an infant is born, not only helpless -- needing the loving care of household -- but also sick, requiring specialized treatment by self-certified experts. Others believe that adults routinely require various drugs and interventions in order to become old, while the dying need medical treatment.

Many have forgotten -- or are no longer able to enjoy -- those common-sense ways of living that contribute to one's well-being and ability to recover from illness. Many have allowed themselves to become dependent on a self-aggrandizing technological myth, against which they nevertheless complain, because of the impersonal ways in which it impoverishes many while enriching a few.

Sadly, I recognize that many of us are infected with a strange illusion: a person has a "right" to something called health care. Thus, one states a claim to receive the latest assortment of technological therapies, based on some professional's diagnosis, to enable one to survive longer in a situation which often ugly, injuries,or depressing or just boring.

I believe it is time to state clearly that specific situations and circumstances are "sickening," rather than that people themselves are sick. The symptoms which modern medicine attempts to treat often have little to do with the condition of our bodies; they are, rather, signals pointing to the disorders and presumptions of modern ways of working, playing and living.

Nevertheless. many of us are mesmerized by the glitter of high-tech "solutions, " we pathetically believe in"fix-it" drugs, we mistakenly think all pain is an evil to be suppressed, we seek to postpone death at almost any cost.

I appeal to the actual experience of people, to the sensibleness of the ordinary person, in direct opposition to professional diagnosis and judgement. I appeal to people's memories, in opposition to the illusions of progress. Let us look at the conditions of our households and communities, not at the quality of "health care" delivery; health is not a deliverable commodity and care does not come out of a system.

I demand certain liberties for those who would celebrate living rather than preserve "life":

* the liberty to declare myself sick;

* the liberty to refuse any and all medical treatment at any time;

* the liberty to take any drug or treatment of my own choosing;

* the liberty to be treated by the person of my choice, that is, by anyone in the community who feels called to the practice of healing, whether that person be an acupuncturist, a homeopathic physician, a neurosurgeon, an astrologer, a witch doctor or someone else;

* the liberty to die without diagnosis.

I do not believe that countries need a national "health" policy, something given to their citizens.
Rather, the latter need the courageous virtue to face certain truths:

* we will never eliminate pain;

* we will not cure all disorders;

* we will certainly die.

Therefore, as sensible creatures, we must face the fact that the pursuit of health may be a sickening disorder. There are no scientific, technological solutions. There is the daily task of accepting the fragility and contingency of the human situation. There are reasonable limits which must be placed on conventional "health" care. We urgently need to define anew what duties belong to us as persons, what pertains to our communities, what we relinquish to the state.

Yes, we suffer pain, we become ill, we die. But we also hope, laugh, celebrate; we know the joy of caring for one another; often we are healed and we recover by many means. We do not have to pursue the path of the flattening out of human experience.

I invite all to shift their gaze, their thoughts, from worrying about health care to cultivating the art of living. And, today, with equal importance, to the art of suffering, the art of dying.

IVAN ILLICH The philosopher and theologically trained historian Ivan Illich published his seminal and highly controversial study op health care, medical nemesis: The Expropriation of Health, in 1976.

In his first major essay on this subject in the nearly 20 years since Medical Nemesis Illich argues here that the modern social construction of "a life" into an abstract, disembodied and dis-integrated entity -- a "fetish" -- prepares the way for depersonalized manipulation and management of our existence from womb to tomb.

Going beyond his argument in 1976 that the medical establishment itself had become a threat to health through doctor-induced suffering, Illich here renounces as an indecent demand the very idea of "responsibility" for one's health in a sickening environment. Instead, he takes a radical leap and calls for the only "decent" alternative: hygienic autonomy from any system of health care.