No one has as yet been taught by experience what the body can accomplish.
—Baruch Spinoza
What more can I bring, women and men who live with and care for disabilities every day, that you do not know already? Nothing, of course, except a strong emphasis on two aspects of this hardship.
First, the link between disability and mortality. Disability is the modern side of the tragic in that it puts us in front of mortality (individual and social) that we are still today incapable of grasping. Mortality that is not only unthinkable when due to a crime or a war but even more so when it underlies one’s entire existence.
Yet the tragic—and that will be the second aspect of my message—can become a chance. How? By mobilizing an exceptional creativity in each of the protagonists of the hardship, the situation of disability reveals our irreducible singularity as speaking beings. That is what I call a chance, and the social link can be rebuilt around this.
“Why are you concerned with disabilities?” I hear your question, I’m often asked it. Generally, I satisfy people’s curiosity. Not without noticing that the simple fact of asking the question reveals the particular exclusion that affects those in a situation of disability. Indeed, after two centuries of human rights combats, and regardless of the inadequacy of the gains in this area, we easily accept being against racism, anti-Semitism, or any other form of discrimination related to ethnic origin, social class, race, religion, or sex. But it is not the same for disabilities: here we are not confronted with a “difference” like the others, nor even a “fragility” or a “vulnerability” like the others. Thus the persistent surprise: “Oh, you’re interested in that? Whatever for?” Tonight I hope to help you understand what form this particular discrimination takes and what the stakes are.
In reality, my experience with disability transformed me, the rather abstract intellectual on the way to becoming a psychoanalyst, into a novelist, with less conceptual and more sensitive language; besides, as a mother, it committed me to a gigantic task, and every moment I measure its urgency but also its utopia. Because this task really deals—neither more nor less—with refounding humanism.
How does disability change our experience and with that, our idea of the human? Can this upheaval help us build bridges between Christian humanism and the humanism that came out of the Renaissance and the Enlightenment? Such are the stakes implicit—above and beyond the concrete account and the day-to-day living with disability—in my epistolary exchange with Jean Vanier, published under the title of Leur regard perce nos ombres.1
SECULARISM AND HUMANISM
As you know, an event took place in Europe—and nowhere else in the world—since the Renaissance and the Enlightenment: as “the machine for manufacturing the beyond is no longer working,”2 so men and women have severed the tie with religious tradition. Rebelling against those dogmas and in order to liberate their bodies and minds and become the sole legislators of their social ties, men and women have rejected the idea of God. From agnosticism to atheism, diverse variations of secularization exist. Far from being a nihilism that leads automatically to a Holocaust or a Gulag, as is often too easily said, secularization turns out to be perfectly able to combat obscurantism and religious fundamentalism. “From then on, religion entered the field of social sciences” to the point of “having access” to “what seemed impossible” such as “the word of God,” said the grand rabbi of France.3 This means that secularization reestablishes this “severed tie of tradition” to tame the complexity of the continent of religions and to reevaluate it by elucidating the limits as well as the benefits of its essential contributions. This vast challenge that the human and social sciences, psychoanalysis and philosophy, have undertaken is one that Jean Vanier and I—modestly and in all sincerity—have tried to maintain all through our correspondence. Today, I can say, without exaggerating but instead by measuring the distance left for us to travel, that our exchange seems to me to be one of the rare concrete examples—maybe the only one—of the missing debate on secularism.
I experienced the recent interreligious meeting that took place in Assisi on October 27, 2011, as a continuation of this process where the Catholic Church invited nonbelievers for the first time. In closing this event, Benedict XVI called on the faithful not to consider themselves as “possessors” of the truth but to take an example of sorts from those who do not believe in an absolute truth and who “are seeking” it as an “approach to existence,” a “questioning” and an “interior struggle.”4
How has the experience with disability led me to this refoundation of humanism based on a new secularization? A secularization for which the era of suspicion no longer suffices because, faced with threats and the deepening of crises, the time has come to wager on the possibility of men and women believing and knowing together. Why is disability not an exclusion or a “fragility” like others, and why, then, does it exhort us to revisit in depth the model of the way we think it—a model passed down to us from Greek philosophy and, in some ways, from Christian humanism?
Before passing on to you some philosophical considerations, I would like to remind you of a few steps in my own personal journey, evoking three examples—John, Claire, and a woman seen on television—three ways of sharing the hardship of disability. If I may, I recommend my book Hatred and Forgiveness,5 because it deals with concrete experience and personalized care of the disabled person that could bring about this change in thinking that I am advocating before you today.
SINGULARITY
So I am using this debate on the “disabled life” to emphasize the right to irreducible singularity, because I am convinced that modern and collectivist humanism failed when it tried to turn its back on singularity. This was what totalitarian regimes did. It could happen in different forms with the ongoing trivialization of the human species that some advances in science, technology, and hyperconnectivity are forthcoming.
In this context, the disabled person is this sensible place of the human chain where the “care through integration/collectivization at any price” can lead to an unprecedented automatization, just when it should bring repair and relief. We know today that if the modern meaning of happiness is freedom, freedom is not necessarily “integrative,” “collective,” and “in the norm” but rather is conjugated in the singular. Duns Scotus (1266–1308) upheld this against Thomas of Aquinas: truth is neither in the universal idea nor in opaque matter, but in “anyone,” this man here, that woman there; whence the notion of haecceitas or ecceitas, of hoc, haec, or ecce, “this,” the demonstrative indexing an unnamable singularity. Besides, this calls up Dun Scotus’s finding on reading the words God spoke to Moses: “I Am Who I Am.” The unpronounceable call of the name is exactly the sign of extreme singularity.
Why bring up this dream today and consider extreme singularity as a pivot of the social pact?
We are witnesses of a new era, and we know it: in this unbridled globalization, we can no longer distinguish Good, thus it is easier to invoke Evil, or more exactly the axis of Evil, against which terrorized humanity must rise up.
Some people are in search of a new foundational myth, or are trying hard to rethink or deconstruct the divine. Never, however, have the “grass roots” of humanity, that is, all these outcasts, diverse though they may be, had either a project or an ambition as tenacious and free—a human ambition, in fact.
There is not really a question here of a possible and new mythology of Love with a capital L. It is instead an appeal launched to nature and the tragic. The men and women who day after day accept and care for disabled people are determined to combat the most unbearable of our fears: one that returns us to the limits of our existence.
I am wary—you know this—of the term “integration” for disabled people: it implies charity toward those who would not have the same rights as others. I prefer to use “interaction,” which expresses a kind of politics that has become ethics, by widening the political pact to reach the frontiers of life. And it is not surprising to find a majority of women (maybe it is also the chance to exonerate the feminine side of men?) on this new political front of interaction. Would it be because after years of feminism and recognizing their best ambitions, women are able to renew their immemorial capacity to care for psychic and physical life by making it a political act and in the long term a political philosophy?
MORTALITY
Let us try to get closer to the disability singularity. When it is a question of disabilities (motor, sensorial, mental, and psychic) that show themselves in a specific manner in each concerned person, is it a singularity like others, a solitude like others? On this point, my opinion at first differed from Jean Vanier’s. I maintain that disabilities cannot be reduced to the category of “difference.” I challenge the “one-size,” “catch-all” concepts such as “we are all different,” all “others,” all “vulnerable,” or all “fragile.” No, we are not “all disabled.” And perhaps even less than we are “all gay” or “all German Jews.” Why?
I repeat: disabilities differ from other “differences” insofar as they put us face to face with mortality. Nonconformity to the norm, which is the situation of disability, is a crossing of biology (a biological deficiency) and the social response to this deficiency: biological and social, nature and culture. But more than sexual transgressions, for example, the disparity with biological and social norms that disabilities present is perceived as a deficiency (I’ll come back to this) that can in certain cases and within certain limits be repaired will kill me if I am alone, without a prosthesis or without human help.
The anxiety of death, of human finitude, of the limits of the human himself (facing certain onerous multiple disabilities) is, besides, the hidden side of this iceberg—this so insurmountable bloc that the disabled person and his family know so well—that is often the attitude of the able-bodied toward the disabled, this mix of indifference, shame, and, sometimes, arrogance. Of course, all humans know they are mortal, but we prefer not to think about it. And some even count on the eternal. And yet biology has discovered that cellular death (apopotosis) is ongoing and parallel to growth from the moment of conception, and this is what sculpts the living.6 The disabled person lives with mortality at work within, a companion of solitude, as Baudelaire spoke of his pain: “Give me your hand, my Pain, come this way!” Inevitably, the supposed solitude of the disabled person has an absolute companion, a permanent double: the pain of mortality. Even if this person is not ailing, even if he feels no specific pains, his disability constantly reminds him—or at least his entourage if his deficiency deprives him of this consciousness—that he is not like other living people who themselves are able to refuse to know that they are mortal.
Religions and other forms of the spiritual introduce this dimension of mortality into the minds of their followers, although many of those who claim this dimension are in defensive denial in their everyday practice. Secularization, on the contrary, has not constructed an argument on the morality within us. I am not speaking about death: we are experts in celebrations. Nor about dependent old age: the longevity of parents and grandparents makes us happily pay into our retirement funds, for there is a good chance that this disabling “very old age” may one day be our own. I am speaking of “living mortality,” from birth or as a result of these “unpredictable biological genetic variables” that can generate disabilities: this mortality called “disabling” is still unthinkable for us. A radical change of thinking is therefore needed so that the hardships of disability make us better assume and accompany the human condition to its limits and in its finitude. The consciousness of our finitude and its accompaniment is an integral part of human singularity.
NORMS
Disability has thus led me to locate the finitude and anxiety of death in the uniqueness of the human person. But another revision of our tenacious prejudices is still needed concerning the disabled: that of the norm. Can we approach it without romantic rejection, without servile submission, and with all the seriousness it requires? The norm is not only a discriminating social, economic, and moral constraint; it is inscribed in the social contract starting with language. As soon as I speak, I accept and share norms. To speak is to submit to grammatical norms, and the speaking being must conform to common rules, without which there is no exchange. The compassionate rejection of norms also seems to discount fundamental biological laws that order living organisms (even if current knowledge in this area is insufficient and there is unpredictable biological variability). The idea of a norm, of a typical form, of an appropriate rule is as indispensable in biology as for the social link.
Yet with the development of democracies, and also the achievements of the life sciences, biopolitics advances another understanding of the norm. Indeed, thanks to their active adaptation, one that is revolted and creative vis-à-vis norms, new political subjects have come to the fore, such as people living with disabilities who push back the limits of earlier norms and generate new ones. It has thus become normal for the disabled person to lead a social, family, and love life. The norm is no longer an a priori fixed concept but rather a dynamic one. Where is this mutation’s motor? How is it that singularities shake up the norms and allow them to evolve?
PRIVATION VS. POSSESSION: “TO HAVE” OR “TO BE”
Militants for the rights of the disabled reject the very term “disability.” The one criticism among the many that I want to point out is that our model for disability results from an Aristotelian conception of human aptitudes that assumes a universal typical form (an archetype) from which “diverse situations” or “cases” deviate by default—by deprivation of having (steresis). I am blind because I am deprived of the sensation of seeing or the ability to see. In Physics and the treatise On the Soul, Aristotle analyzed these variants with great subtlety, their “potency” and their “impotence.” In Matthew, the Aristotelian steresis led to the category of “poverty” (25:35–46): “For I was hungry and you gave me to eat; I was thirsty and you gave me to drink; I was a stranger and you welcomed me; naked and you clothed me; sick and you visited me; in prison and you came to me. Whatever you do to the least of these, you have done to me.” To be clear: of the various “leasts” and “steriles,” lacking or poor let us share the impotence with passion; and on this com-passion with the “lack of being,” let us found “well-being,” the ethics of what Christian humanism will be.
Without being reduced to an ontology of negation, this ontology of privation finds echoes throughout the whole history of philosophy, concerning the “to be” and the “being” in its “finitude,” passing by Descartes and Hegel and up to the “ontological difference” of Heidegger.7 Concerning the specific area that unites us tonight, we can observe that the philosophy of privation includes the poor, the sick, lepers, drifters, and the crippled, without distinction, all those marked by a lack or a flaw. The magnificent works of charity are inspired by them, the foundation of Christian humanism and of the Church understood as “community of the suffering servant” who will “com-plete,” “give” to those who “have not.”
This solidarity model based on poverty / privation / “lack in being” continues to prove its effectiveness. Not only through charitable works, but also concerning knowledge: it is often through the study of “what is lacking” (pathologies) that the sciences appropriate the complexities of “what is full” (normal functioning). For example, by studying aphasia, the mechanisms of language can be better understood. It is not a question of ignoring the pathological and less still of abolishing it—the inevitability of the norm makes that impossible—but rather of adjoining it to another.
For the paradigm of lack—with its counterpart compassion and/or tenderness—also has its limits, even flaws, which I did not fail to point out to Jean Vanier in our correspondence. Its theorization comes from a Greco-Christian origin, but the model is now unconsciously universal. As it stands, it risks enclosing the disabled subject in a position of “needy object,” of “taken in charge.” At best with “tenderness,” often neglecting the scientific knowledge that enables the identification and treatment of specific symptoms and that can end up in infantilization. Indeed, the intrinsic logic of this model holds the disabled subject back: it prevents him from opening up to his “potencies,” that is, his singular potentialities; does not enable him to use his always irreducible solitude for his singular creativity, for his initiative that can be shared according to his own limits. When it does not lead to “integration” at any price, the logic of this model nurtures the fantasy of an ideal jouissance, supposed fusion-confusion of the able-bodied “haves” with the “deprived/have-nots,” improbable communion where sects can comfortably do their business.
I support, on the contrary, and counter to the paradigm of “having” and of steresis, that the paradigm of the singularity of the being—which includes even the deficiency itself, as an indicator of finitude and the frontiers of the living—is not a deprivation, a weakness, or a sin. The contingency of the singular is positive, and in it “to be” and “being” merge. The contingency of the singular “disabled” reveals to me my own singularity of “a have,” meaning “able-bodied,” which I neither exalt nor deny but that I tame for good from the singularity of the so-called have-not. The ongoing mortality touches me in him, I am part of it, mortality falls on me, I accompany it, I love it as it is. By my love for the singular other, I carry it to its specific, singular development—and to mine, equally specific and singular.
Of course, one no longer, or rarely, associates a “disability” with a “fault.” But spontaneously, automatically, “normally,” one continues to exclude, to “lonelyize,” to ostracize. Only later does one pretend to “integrate,” but always with the idea in the background of “deprivation,” of a “flaw” that essentially “we others,” the “haves,” would not have in essence. “We possess (aptitudes, strengths), but he/she does not; he lacks them”: this model of lack remains “the” implicit and indelible assumption of our humanist, Christian, or secular philosophy. Of course, the poet sometimes revolts: “There is none more deaf than the haves,” wrote Michaux. But it would be just as false to say that we are all deaf because we are all “haves.” As long as we distinguish an essential being from an inessential and lacking being, we will be tempted by the segregation of the living. The essential Being is perhaps no longer Divine, but we have replaced it with Biology, when we understand the disabled person as “deprived” of certain biological aptitudes (Biology—with a capital B—takes the place of the essential Being: might the “divine” return in the postmodern, bioscientific “being”?); or when we consider the disabled person as being without cultural and social abilities (Society—still with a capital S—thus assuming the role of an integrative “being”).
On the contrary, leaving aside this paradigm of “poverty” and “fault,” and substituting it with that of the incommensurate singularity of each person, including the disabled, we get closer to the Scotist ethic. What is a Scotist ethic?—Here is “the” question to ask at the College des Bernardins, this crossroads of theology and philosophy where specialists like Emmanuel Falque can enlighten us.8 Is it a more “mystical” ethics (some, like Gilles Deleuze, have said “atheist”), while Thomas Aquinas’ would be more “social”? In Scotist-inspired ethics, in any case, singularity could be thought of as the only positivity, the only value, as one says today. But it was starting from the positivity of being that Duns Scotus extended it to the Being itself, to God as the causa singularitatis. God would be singular, and Christ especially, for Man-God develops the density of his singularity in particular by the trial of his passion in death, and up to his glorification as wounded-crucified sur-vivor: since this is neither a repair nor a satisfaction but precisely the evidence of his singularity.
A militant for the rights of the disabled in the United States, Nancy L. Eiesland, takes up, apparently without knowing it, this Scotist idea in her book The Disabled God when she described Jesus as the only “disabled god.”9 Did he not appear to his apostles, even in his glory, with an unpaired body, a damaged body? Here, the wound is not a lack, for it is an integral part of the Glory, itself given and perceived as a singularity.
The once-canon Diderot had taken this “positive singularity” up in another way, that of modern humanism,” when he undertook to transform the disabled person into a political subject for the first time in the world. In his Letter on The Blind for the Use of Those Who See (1749), he made his point clear: the disabled have rights, are born free and equal in rights. And Declarations of Human Rights would take a lot of time to formulate and implement this principle that transforms, in efficient positivity, the finitude in act in the disabled person. The right to “personalized compensation” in the 2005 law is an outcome of this.
Nonetheless, to accomplish this ambition of modern humanism, political will and laws are not enough. We would have to reinvent this corpus mysticum that Kant himself evoked at the end of the Critique of Pure Reason (1781), whereby the singularity of the disabled person could transform norms into dynamic, evolutive concepts: reinvent love as union with singularity of all others. In other terms: the love of singulars must be substituted for integrating solidarity with the weak. What love? Love as desire and will so that the singular can elucidate, be recognized, and develop in sharing his own singularity. Far more than solidarity, which itself still has trouble existing, only this love can drive the constitutive singularity (and not “by default”) of the-one-who-testifies to mortality to thrive in a society founded on the norm (without which, as I have said, there is no link) but that can make norms evolve.
I am thinking of the training of caregivers in place of psychoanalysis in this complex and controversial area when broaching the question of love, understood as a continual and elucidated transference, in caring for the disabled person. We will undoubtedly return to this in the debate. Allow me to conclude—on a more personal note—by calling up the maternal role in this hardship.
MATERNAL RELIANCE REVISITED
“I want you to be,” says the mother to the child. Volo ut sis, says the Scotist ethic. “I love that you are,” I say to David. My empathy, my loving fusion with him, showed me that with his perfect pitch he can make music in spite of his neurological deficiencies. Yet, I really accompany him only by facilitating his means of separating himself from me, of personalizing his languages, his means of expression, and his link with others to the maximum. He will make music, multimedia, an artistic ESAT will be created, he will participate in his singular way, not as I want but as he wants and can. A new “worksite” will be started: “an “emotional and sexual life,” with his pals and care people whose training has to be worked out. He is joining a “personalized” life place: thanks to Jean Vanier, it will be “Simon of Cyrene.” He will fall in love, it is difficult, is it possible? I doubt it, I say to him, “David, you’re dreaming!”—“But Mama, I dream, therefore I am,” he answers me. And the norm itself is beginning to adapt itself to his being. It even becomes “normal” for it to be talked about at UNESCO and the College des Bernardins.
In this central role played by patiently elucidated and problematized empathy and love, which I call a vigilant transference, Jean Vanier’s exceptional experience is pioneering. We have recently seen a secular version, which does honor to republican secularity, in the film The Untouchables (produced with the support of the Simon of Cyrene association). The love along with the humor and cheerfulness that results from it, this burst of laughter that pulverizes the pain and this joyful alchemy marvelously epitomize the philosophy of singular sharing that I am probing for you, and it breaks with a certain postmodern and morose humanism, which—when it does not exalt the theomorphism of its integrating all-powerfulness—wallows in depressive and whining despair. You can see an example of this in another equally instructive film, the Iranian saga A Separation, the anti-Untouchables. Another style of life—the transcendence of the “self-deficient” by the corpus mysticum of singularities—is taking the place of the habitus of the com-passion of the “haves” with and in the “impotence” of the have-nots. You know this: the extraordinary capacity of sur-vival of these disabled bodies when they are dynamized and express joy in the transferential encounter. They bring to my mind Spinoza’s astonishment: “No one has as yet been taught by experience what the body can accomplish.”10
This secular and bracing corpus mysticum that I call before you, that Jean Vanier practices in his fashion, that the film Untouchables brings to the public eye, is a horizon and a hope for all parents and caregivers. A true cultural revolution. It is easy to wrap it in ironic skepticism, and I do it sometimes too. But I know that many share this philosophy, its energy and its hopes, and try to put it into practice, in spite of obstacles, delays, and regressions of all kinds in a hostile climate of identarian tension and economic austerity.