Jean-François Ravaud & Henri-Jacques Stiker. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.
Questions of inclusion versus exclusion of disabled persons cannot be separated from questions relative to the global processes of social cohesion or social dissociation. The way in which a society situates and treats the disabled is not independent of the way in which it constructs social bonds or dissolves them. However, each society (and, in a broader sense, each culture) has its own fashion of integrating or excluding certain categories or certain subjects, that is, of creating social links or denying them. We must thus expect the meanings of words and practices not to remain the same over time (in the history of societies) or across space (the synchronic diversity of cultural eras). There are numerous ways of posing and answering the question of the social bond and thus of addressing inclusion and exclusion. There is not just a single set of problems relative to the inclusion and exclusion of disabled persons.
Consequently, our objective in this chapter is to avoid being restricted to a single reductive vision of the problem, whether this perspective is French, British, or North American. We shall strive to reveal the different historical and cultural facets of inclusion and exclusion and to show their origins and effects, which are both diverse and most often ambivalent. This sociological and historical observation raises a conceptual problem. The terms inclusion and exclusion operate in tandem and can be understood only in relation to one another. For any definition of inclusion, there is a corresponding definition of exclusion. This means that it is necessary to determine who are affected by exclusion and inclusion, determine what disabled persons are excluded from or what they are included in, and how and to what degree they are in or out at different times and in different social groupings.
Now that the general framework of our approach is set out, we shall proceed as follows. With point of departure in some major theories of the social bond, we will show the difference between societies that could be called premodern and those we recognize as modern societies. The aim of this distinction is to reveal that our present societies are continuously in search of processes and procedures; that is, they are unable to maintain a stable state inherited from tradition but swing ceaselessly between different models. We will lay out the structure of these models and the mechanics of these global processes using a sociological inquiry.
From the perspective of the consequences of this state of affairs in our societies, we will illustrate current forms of exclusion and inclusion and establish a typology of praxis. This typology will, in turn, illuminate our premise that the modalities of inclusion and exclusion are variable, ambivalent, and often connected, in that some of the modalities of premodern societies still crop up in modern societies.
Returning to the way in which the question of inclusion and exclusion is generally posed today, we will show the relevance and value of this historical and sociological distancing for the future of advocacy and action in the sphere of persons with disabilities. Today’s problems can be profitably illuminated by a consideration of the problems of every society, even though the contemporary situation is a specific one, and history does not offer lessons.
The Fundamental Social Processes of Exclusion and Inclusion
Mechanical Inclusion, Organic Inclusion
These terms obviously derive from Durkheim. The French thinker, one of the fathers of sociology, had clearly seen that in modern societies of increasing complexity, one of the central phenomena was the division of labor or, in a broader sense, social division (Durkheim 1930). Unlike Spencer, who analyzed this fact from the perspective of the utility that could be gained thereby, Durkheim called attention to the increase in the “social and moral density of societies”—in other words, “the number of persons who are in effective relations with each other, with the same population volume” (Durkheim 1930:214). With such an augmentation, the system of social roles becomes increasingly differentiated and entails constant shifts in the system of norms and values. An evolutionary process is thereby initiated, in the sense that the fundamental forms of “mechanical” or “mimetic” solidarity, which were those of traditional societies, more and more give way to forms of solidarity that are “organic” or “complementary.” But the latter entail increasing individualism, which conflicts with the priority that had traditionally been given to the social whole.
Durkheim’s distinction is pertinent on several counts. It permits us to emphasize the dynamic character of contemporary societies as well as the permanent challenge that confronts them. On one hand, we can stress the risks of social dissociation, which are greater than in traditional societies and, on the other hand, the possibilities they have, by virtue of their organic nature, of increased integration of the new and alien.
The second interest in recalling Durkheim is to alert us to the fact that in the present global space, social groups may still proceed from a mechanical form of solidarity or at least be caught between a modern dynamic and powerful tradition. This is not to say that all trace of the “mechanical” is absent, even at the very heart of our global Western world, where exchange is continuous and rapid and technology dominant. We do well to recall that these are processes. To the extent that the ruptures are not absolute, we could interrogate African and Asian societies. We are not sufficiently competent in these matters, but there are enough indications that in such cases, the premodern and the modern are interdependent and connected.
The third point of interest in Durkheim’s distinction is that it assists us in seeing the difference between exclusion from a society and possible exclusion within society. Societies founded in mechanical solidarity are indeed strongly integrated but are not able to admit “foreign bodies.” When they exclude, they do so in radical fashion and are often incapable of assimilating the new. Modern societies have a very great capacity for inclusion but, on the other hand, are in danger of pulling apart by creating enclaves within themselves.
Before turning our focus fully to contemporary societies, we shall briefly describe those societies that proceed from mechanical solidarity.
In societies characterized by mechanical solidarity, which can be compared to the holistic societies of Louis Dumont (1966) or what Tönnies (1979) called the Gemeinschaft, the individual is a constituent of an irreducible whole. The individual has his or her fixed place, determined at birth, and in this sense is completely integrated. The individual is a cog in a set of gears. There is no question of changing one’s place, which would jeopardize the global mechanism, leading to severe sanctions against the cog that no longer fills its function. In such societies, persons with infirmity may be integrated and may have a definitive and entirely predetermined place, but without having any claim to free participation in society. This was the case of crippled buffoons at princely courts: The role that was devolved onto them also enclosed them. Take the example of the dwarf Joseph Boruwlaski (1788), who, at the height of the eighteenth century (the threshold of the modern era), illustrates the kind of inclusion of which we are speaking. In the society of the ancien régime, he had his place as a Polish princess’s Joujou: pet and entertainer. He was integrated—on condition of not pretending to leave his situation, which was fixed once and for all. The day he laid claim to love, marriage, and an independent life, he was rejected and condemned to wander through Europe. Nothing had been foreseen, in social terms, that would assist emancipation. Today, persons of short stature are still subject to depreciating figurations, but the right to live and work among others is no longer denied them. On the other hand, if they want a place, they have to struggle for it, for if society is legally “open,” all of its spaces are conceived on a scale dictated by the average stature of its citizenry as a statistical norm: transportation, public counters, equipment, and the layout of controls. It is here that the issue of accommodation arises. The gap between the dwarf, Joujou, and persons of short stature today is great because we have passed from a society with mechanical solidarity, which assigned an invariable place to its members and thus included them in a certain fashion, to a society that works for their integration but scarcely succeeds because it has surrendered its social mechanics in favor of organicity.
Thus, we can establish a first meaning for the concept of integration in the following terms: a place, a single place, and a fixed place in a whole that has no intention of modifying itself. The person who does not have a place of this kind is literally not part of society. He or she may be the stranger, whose assimilation is problematic and presupposes, when it possibly occurs, recognition of similarity and a partial integration by means of a subgroup (Simmel 1908). However, most often, one can scarcely say whether the individual is excluded or included because he or she cannot enter into the society, being so completely “other.” This person is excluded through negative rather than through positive action. Barbarians could not become Romans, foreigners could not become citizens of Athens (except through a very special procedure), and so on.
The positive act of exclusion, on the other hand, can occur in the case when the individual raises the issue of his or her “integration.” Here we could speak of disintegration in some cases, in the sense that the disruptive element will be destroyed (the death penalty in some societies for certain kinds of behavior can be explained in this way). The typical example is antiquity’s treatment of infants born deformed: Their strangeness, referencing a divine warning, and a fear of deviance within the species and of more or less imminent misfortune led to the well-known “exposure” beyond the social space. We are dealing with a society, however capable it was of strongly integrating its citizens, that could not tolerate the “stranger,” who is then excluded from society. In this kind of mechanical solidarity, a term such as inclusion is inadequate or, at a minimum, too weak. One has one’s place or one does not, but there is no real process of “being included in.” When solidarity is of the mechanical kind, belonging is a factor of the idea of community. One must be similar, a relative, or a neighbor. Nor can we speak of exclusion within society, for these societies, however hierarchical they may be (and thus encompass the status of the privileged as well as the status of pariah), assign each group and each individual a place. Even if the superior “castes” are not mixed with the inferior, all social strata are integrated into the whole.
Today, there remain but a few societies that exhibit pure mechanical solidarity. Colonization, economic development, the international doctrine of human rights, and democratic trends have combined to produce many mixed cultural environments, positioned between centuries-old tradition and modernization at work. The inclusion that we have called mechanical is now, in global terms, behind us. However, we do well to bear it in mind, for societies cannot be voided of their holistic character because they are always something more structured than a myriad or even a sum of individuals. Even when the whole no longer exclusively directs the collective arrangements of a society, there still exists an imperative for cohesion and minimal conformity.
In societies characterized by organic solidarity, which may be compared to the individualistic societies of Louis Dumont or the Gesellschaft of Tönnies, there is a tendency for the individual to be isolated. What must be emphasized here is that these societies have to construct their solidarity and their modes of integration. They cannot fall back on the idea of a place for each determined by tradition and culture. They are under pressure to offer individuals a place allowing evolution. Integration is a long road, and there is a reiterated obligation to make new advances because the division of labor and social division entails the constant introduction of new procedures (legislative, institutional, financial), so that individuals are not left to the rigors of competition and isolation. In other words, in modern Western societies, we are moving toward the idea of a process of integration and are no longer focused on places and statuses that are determined once and for all. When these processes loosen, individuals are at risk of being left adrift, subject to what Durkheim (1930) called anomie. There are no longer sufficient common arrangements to sustain the social bond. Moreover, on the global level, there must be sufficient commonly shared mental representations that these processes can be maintained. This is what Durkheim called the collective consciousness. This notion is one of Durkheim’s most contested ideas, but it indicates that societies are made up of representations as much as of concrete practices. Sociology has developed these ideas at considerable length, as has the Chicago school with Goffman (1963) and Becker (1963), particularly with reference to persons with disabilities.
It is useful to ask why modern societies are thus simultaneously engaged in the task of inclusion and at risk of disaggregation. Societies displaying mechanical solidarity, almost completely holistic, are also societies that may be qualified as religious in the sense that they conceive of themselves in relation to an exteriority or believe that their foundation and fundamental rules are derived from elsewhere, in the divine. These are heteronomous societies (from heteros, “other,” and nomos, “law”) in the sense that law is based in a radical alterity. In all traditional societies, the way of addressing the question of disability depends on maintaining a connection with the transcendental, with the beyond, and with the gods or the dead (Stiker 1982, 1999). Western societies, on the other hand, are characterized by having broken with the notion of heteronomy. They base themselves in their own immanence. They have become autonomous. Theories of the social contract, whatever the manner of conceiving this contract, are theories of society’s autonomy. This is because the origin of civil society, in contrast to the state of nature, derives from a “contract” on which humans agreed among themselves to secure their existence and raise the possibility of living together. Admittedly, not all theories of the social contract will lead to the establishment of democracy. There is a huge gulf between Hobbes and Spinoza. Yet all of them institute society on an immanent foundation. Even the absolute monarchies of seventeenth-century Europe, although they were regimes more onerous in terms of subjection than many others, inaugurated this new way of conceiving society (Gauchet 1985). This passage from heteronomy to autonomy is not the only product of the new political thought first evidenced in the early seventeenth century. It is also to be referred to as the birth of scientific thought, in which people could think and know the world by its own means without recourse to revelation. Galileo’s famous “But it does move,” when he compared his discovery to dominant theological discourse, is significative of all emancipation from collective reference to an exteriority. To this must also be added the individual’s conquest of autonomy and not only that of society as such. This affirmation and claim had their specific origin in the Reformation, which permitted each individual conscience to interpret scripture independently of established religious authority and dogmatic definition. The autonomy of the individual also includes the capacity to be an economic agent and to create one’s own place and role, as Max Weber (1920) has emphasized.
All these factors then contributed to the emergence of societies that, relying only on themselves and on the strength of constituent individuals, are entirely responsible and accountable for people living together. This equally explains why they are vulnerable and why the risk of marginalization, even social abandonment or exclusion, is so great. This is the greatness and weakness of democracies that are all continuously working at the process of integration. Here, we would distance ourselves from the thesis that emerges from a reading of Michel Foucault. Foucault (1961, 1975) described exclusionary measures that took the form of the confinement of the insane or the incarceration of the criminal. In so doing, he gives the impression that since the seventeenth century, Western societies would be characterized only by exclusion. This fails to take into account the very powerful revolutionary movement toward political equality. This is not the place for the full discussion of Foucault’s thought that would be needed to explore all its contrasted aspects. What is certain, however, is that since the end of the eighteenth century, Western societies have experienced a thrust toward inclusion because they were so obliged by virtue of their very founding principles (Gauchet 1995).
Let us explore in greater detail this idea of society as a “construction site for democracy,” illuminating clearly the nature and degree of the inclusion or exclusion of the persons with disabilities in our contemporary societies.
Constructing Inclusion in Modern Societies and Its Contradiction
The Normalization Process
One of the major procedures in the attempt at integration is normalization. Let’s be sure we have an exact sense of this concept. It is not a question of leading all members of a society to an ideal model of humanity, as was the case in certain earlier philosophies or religions. Stoicism and the imitation of Christ may serve as examples. It is a question of defining the mean, comparing deviations from this mean, and trying to diminish such deviations to bring individuals closer to the mean.
Our societies no longer have a single ideal of the human being or of the citizen any more than they have one conception of a fixed and definitive form for the social order. As a consequence, a system of reference that permits minimal conformity and basic social cohesion becomes the effective mean in practical terms. Society’s approach is based in statistics and probability theory.
This manner of inclusion is clearly illustrated in the case of persons with disabilities. For children with mental retardation to be admitted to school, they need to be able to follow lessons and thus reach the required level of competence. If they fail to reach this level, they are placed in separate institutions, which are supposed to bring them (back) to the norm. In the event of impossibility, they risk being segregated for almost their entire lives. For disabled adults to have access to employment in the business environment, they must acquire the equivalent autonomy and vocational competence, and this too must match the mean. These efforts, unquestionably beneficial, to reeducate the body and mind are also aimed at reducing the gap between the disabled and the able-bodied individuals. To be, to do “like others,” is the objective of such rehabilitation. In addition, it is on this idea of deviation from the norm that the notions of the notorious International Classification of Impairment, Disability, and Handicap, proposed by the World Health Organization (WHO) in 1980, is founded. Disability is equated to any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being (which human being, if not the one taken as the reference?). Handicap is in turn defined as a disadvantage that limits or prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for a given individual. The normalization imperative could not be more evident.
We would do well to recall Goffman (1963). In humorously describing the average American by showing that anyone found at odds with one of his or her characteristics was considered deficient and more or less to blame, Goffman analyzed the weight of the statistical norm with acuity. He wrote,
For example, in an important sense there is only one complete unblushing male in America: a young, married, white, urban, northern, heterosexual Protestant father of college education, fully employed, of good complexion, weight, and height, and a recent record in sports. Every American male tends to look out on the world from this perspective, this constituting one sense in which one can speak of a common value system in America. Any male who fails to qualify in any of these ways is likely to view himself—during moments at least—as unworthy, incomplete, and inferior; at times he is likely to pass and at times he is likely to find himself being apologetic or aggressive concerning known-about aspects of himself he knows are probably seen as undesirable. The general identity values of a society may be fully entrenched nowhere, and yet they can cast some kind of shadow on the encounters encountered everywhere in daily living. (Pp. 128-129)
Similarly, Norbert Elias (1965) shows that between the established and the outsiders, the distinction is based less on problems of characteristic features than on the disparity in credo, values, and established “habitus.” It is racism without race. If there is still a problem of identity, there is first and foremost the difference with respect to accepted norms.
The will toward normalization must be referred to another force that permeates our contemporary societies: the appeal of the universal. Modern Western societies, driven by the necessity of establishing the conditions of inclusion on their own to further cohesion and reduce inequalities, have thought that their forms of sociability were the most advanced. In this they pursued, perhaps without being too aware of it, the Christian universalism that formerly justified the conversion of nations and the wholesale imposition of Christian civilization. However, this is clearly not our present problem. What is certain is that democratic principles (the celebrated notions of liberty-equality-fraternity) seem destined to rule the world, just like our production modes, with free trade, salaried employment, and all the other components of industrial society. Topping it all, the individualism of success, performance, and pursuit of well-being also seems universal. The assimilation model is suited to summarizing a powerful thrust in our societies and is a model that plays a determining role in the social treatment of disabled people.
The Assimilation Model
The point of departure is the undeniable universality of humanity. The human species is a unity. The other can only be another “I.” In principle, there are no limits to the rights of human beings as such. This is the great triumph of democratic revolutions, both French and American. Yet we move very quickly from recognition of equality to a desire for sameness. The other is destined to become like me, for I represent the universal human. In concrete terms, this slippage from the universal to pseudo-universalism is frequent, whereas the universal ought to remain only a regulating idea. This was the temptation of many an empire: One form of life or one ideology is raised to the status of universal and seeks to impose itself against an insurmountable diversity. In a case such as the former Soviet Union, this is more than evident. The Stalinist mold sought to impose uniformity, and after its failure, nationalities and nationalism were instantly reborn. The temptation is a constant one and is also seen in the pretension of Western nations to be the guardians of an order that is above all their own, as in that of certain Middle Eastern countries, to impose their politico-theological conceptions.
In more empirical fashion, the assimilation model generates more or less this discourse: There are common values, common objectives, canons of conduct, and a mean that we must strive to approach. The task consists of doing everything to rejoin this consensual and uniformizing communality. There is a certain French-style republicanism here: The republic defines its points of reference and its criteria, often enviable or even grandiose (secularism, social rights, educational system, public morale, and equality of rights). Yet, in turn, one must accept to live according to these norms, and this kind of republican environment can become “blind to differences.”
In this model, we are on the way toward forceful integration. Each element must conform enough to assume its place in the good order of the whole. In return, the powerful denial of anything “other” keeps us in check. The other can be annulled. In its fullest expression, this model leads to the rule of “in-difference.”
As it concerns persons with disabilities, this model seems to take into account such an orientation as positive discrimination. This statement may appear paradoxical because such a measure isolates and stigmatizes. One has to be labeled “handicapped” to benefit from the special measures reserved for this population. The legislator has foreseen a series of aid measures (financial) and special means of training or work (sheltered institutions of all kinds) in consideration of the fact that people in difficulty, due to an impairment, represent a vulnerable population for which special dispositions are required for them to “catch up with the bunch” and not be left adrift. We can clearly see how this perspective leads social environments to become disinterested and think themselves dispensed from the day-to-day integration of disabled persons.
This compensation for disability sometimes entails social isolation, rehabilitation, training, and work, all of which is under the rubric adapted. However, what must be emphasized is that this segregating effect is first and foremost the consequence of a will toward assimilation. This discrimination, which we will metaphorically and euphemistically call a detour, has as its objective a return to ordinary life or, if this is really not possible, at least a behavior and mode of life close to the average citizen’s. If it were not for the appeal of these norms and common habitus, many of these efforts would not be sustained.
Let there be no misunderstanding about our analysis. Our purpose is not to discredit this pull toward conformity or the assimilation of disabled persons into the mainstream. The assimilation model is a powerful stimulant toward equality and integration. We seek only to point out that it is one of the points of reference that has a pronounced effect on attitudes toward persons with disabilities. The critical point is this: If we go too far in the direction of assimilation and thus fall into what could be called “assimilationism,” we will end up rejecting the other in his or her irreducible difference, in the right to be oneself or to be as one is. We end up rejecting the richness of these multiple ways of being human. We endupbeing drawn into what psychoanalysis knows so well—denial. Denial is always dangerous, for what is denied surges up again and can at times advance its claims with violence. An obvious example is found in the proscription of deaf sign language. It has returned in full force but has also obliged the Deaf community to “bang on the table.”
The will to assimilate, which finds its major process in normalization, entails a series of contradictions and runs up against social phenomena that are moving in a quite different direction.
The normalization process collides with the increasing complexity of our societies. As concerns disabled persons, if we have succeeded in eradicating certain impairments or diseases, such as poliomyelitis (at least in the West), we have seen quadriplegia increase, seen brain injury become a major form of injury, and are now confronted with instances of multiple disability. These examples permit us to pinpoint two facts: Society, by its very development, multiplies risk, and medical technology saves and prolongs “cases” that otherwise would have disappeared. Moreover, the risks are due as much to the evolution in behavior (e.g., sexual risk) as to technical evolution (traffic accidents, among others).
We must also insist on the innumerable consequences of lengthened life. Here, too, we confront problems in the sphere of disability that were unknown a few decades ago. We have won many additional years of life for those with Down syndrome or muscular dystrophy, but we must face the problems that accompany their reaching adulthood with questions of employment and, at a more advanced age, the complex problem of their aging and of adequate services.
In short, present-day society can no longer lay claim, as it did more easily in the case of victims of accidents at work or wounded veterans, to an inclusion or even an erasure of the consequences of these deficiencies.
However, this is not the essential. We must analyze the new processes of social exclusion in wealthy societies and the rising tide of claims to identity.
When the Social Bond is Broken
From a functionalist perspective, exclusion results in dysfunctionalities in a society whose norms bar the way to integration for populations that do not correspond to the norm or do not do so sufficiently. The new phenomenon is that for some 20 years, Western societies have found themselves in a paradoxical situation in that they continue to produce great wealth but no longer have any means of ensuring sufficient employment. The production of wealth (material and immaterial goods, financial products) does without labor resources more and more. Unemployment has become endemic, as if it were one of the preconditions for society’s functioning. In addition, habits and customs have changed (divorce, single-parent families, substantial vocational mobility), and a considerable amount of people no longer find a sufficient foundation in human relationships. Economic instability and the fragility of relationships rise in tandem (Castel 1995). Clearly, the loss of revenue, to the point of having no revenue at all, and the degeneration of relationships, to the point of complete isolation, are processes; as a consequence, they can come to a halt and even recede. This is why public policy, thanks to more or less shifting measures, occasionally succeeds in maintaining these populations in social inclusiveness. Yet at other times and quite frequently, a precariousness takes over, a kind of social substatus. The affected populations are continuously in the process of losing and regaining income or relationships. Unemployment, like employment, is intermittent. If they prevent people from falling into absolute, permanent poverty, they do not permit true integration, in the sense of lasting participation in the enjoyment of material and cultural goods. When the two processes—unemployment and loss of relationships—come to a head, then the fundamental social bond is breached, even lost. Then one receives little or nothing from society and no longer contributes to its wealth and social development. Finally, one is supernumerary and superfluous. In historical terms, it is not carved in stone that this situation cannot change or even be reversed. The exclusion of today, as it is historically situated, is not a fixed destiny. The problem of exclusion today is much more a problem of the social bond than a problem of poverty. Substantial populations are at constant risk of finding themselves removed from what constitutes the very basis of social belonging, that is, exchange. Exchange is what Marcel Mauss (1923) analyzed so well in the category of the gift. The degradation of the social bond, for a considerable percentage of the population of so-called advanced societies, foils the work of inclusion, which is nonetheless inscribed in the ongoing democratization that characterizes them.
Are disabled persons affected by these processes of social dissociation, what the French sociologist Robert Castel (1995) calls “disaffiliation”?
When there are no specific measures (special programs or affirmative action), there is a great risk of seeing those struck by illness or accident being drawn into the vortex of exclusion, in the sense in which it has been analyzed above. This is less true when public authorities—in the form of allowances, institutions, and human and technical assistance—direct specific attention to them. Yet no one is free from being swept off by the processes of which we have spoken. When this happens to disabled persons, the situation is aggravated by the usual barriers that block their route and by their lack of access (physical, psychological, cultural) to social spaces. We should stress the difference between exclusion in the sociohistorical sense described above, due to conditions that the future may well change even if the end is not presently in sight, and exclusion from certain goods, places, or services. This non accessibility has a dimension that is more constant but also is more commonplace because it is the lot shared by a great number of citizens in fact, by everyone at one time or another. The social barriers are certainly more numerous and more insurmountable in the case of deficiencies, but they are determined to a greater extent by the political will for accommodation, which could be brought to a successful conclusion if we persevered and brought appropriate technologies into play. In any event, this type of exclusion is not dependent on central mechanisms that are part of the world economy and established customs, as is the type we have called disaffiliation. We would prefer to call it segregation because it entails moving people to the side, and this also is an obstacle to the full participation of citizens.
We called attention to another factor—that of claims to identity. Our perspective will be the problem of profound deafness. Let us summarize the argument of the Deaf community. First, we are speakers like other speakers, and we have a language. Admittedly, it is a language of gestures and signs and not of sounds and words, but it is a whole and distinct language. We also have, through this medium, a way of thinking, of situating ourselves, of being in the world. In short, we have a culture. Our “inferiority” is nothing other than oppression and can be compared to that of minority cultural communities in the simple numerical sense or because they are too alien to the dominant and dominating culture. From this position, we easily see how the notion of disability and impairment begins to withdraw, become a secondary feature, or is completely dropped.
Second, the deaf are deaf, just as some people are black or white and are male or female. To wish to transform this condition is as absurd as wanting to make a white person black or a woman a man. One part of the eugenics movement, fearful of seeing a “deaf race” evolve, proposed forbidding marriage between deaf people and called for sterilization (Bell 1883).
This condition entails a mode of communication and signifying of its own—sign language—and also a specific and original culture. Withdrawing a deaf child from his or her natural community is an inadmissible violation. In Mask of Benevolence, Harlan Lane (1992) writes,
Even if we could take the children destined to be members of the African-American, or Hispanic-American, or Native American, or Deaf American communities and convert them with bio-power into white, Caucasian, hearing males—even if we could, we should not. (P. 237)
The possible is not the desirable, and the ethical debate over cochlear implants is there to prove the topicality of the question. Nor should we ask a deaf person to express himself or herself in oral speech like hearing people. Deafness is not a limitation; it is a biological characteristic that has given rise to a specific culture (Lane 1984). This position reflects a vision of identity that can be translated into the notion of minority. The sociological concept of minority, in fact, stresses the ethnic and cultural aspects of difference, well beyond the question of number. Minorities are composed of
individuals who have a common history and culture (and often a common national origin), who transmit their membership along lineage lines, who are in a position to demand signs of loyalty from some of the members, and who are in a relatively disadvantaged position in society. (Goffman 1963:145)
From this background, we can understand how deaf people and all kinds of disabled people have formulated the slogans of “deaf pride” and “disability pride.” It is a matter of pride to belong to a cultural minority, to a group that not only has nothing to be ashamed of but can also make valid claims for its own characteristics.
The characteristics of the Deaf community lend themselves well to the American “culturalist” interpretation of the situations of blacks, women, and Hispanics. The question of the deaf can stand as symbol of very broad problematics and rejoins those of cultural communities and, more generally speaking, of different identities in a society that cannot allow itself fragmentation but ought to be capable of creating social bonds, cohesion, and integration. Our societies are thus confronted with the question of managing differences.
The Differentiation Model
In contrast to the assimilation model discussed above, a model of differentiation has been formulated.
The first form of the differentiation model is the hierarchical one. This submodel seems more predominant in European history than in that of North America but is, on the other hand, very close to many holistic and religious societies. Specificity and difference are recognized and may even be accepted. However, according to the logic of genus and species, a common human genus is defined here, within which a series of points of view are situated that correlate with at least one distinctive feature. From the reference point of sex, the distinction would be man/woman; from that of biological conformity, the distinction would be able/disabled; and from the reference point of appearance, the distinction would be whites/people of color. Yet once these “species” are established, they are not thereby all considered equal. They are situated on a scale of positions and values. This is one means of integrating differences, for they are made to hold together in a coherence that is at the same time a system of subjection and submission. For example, man and woman represent two ways of being human. Yet man will dominate woman because the social roles attached to these roles result in one having a greater precedence, dignity, and importance than the other (political role vs. domestic role, productive role vs. nurturing role, authoritative role vs. affective role). In his Souci de soi (Concern for Oneself), Michel Foucault (1984) shows that relations between the sexes in ancient Greece, just like relations between adult men and younger men, for that matter, are dictated by social position, which determines rights and liberties. This is a kind of cohesion through hierarchy. The Roman Catholic Church has offered us the purest model of this conception. The clergy are different from laity but enjoy a dominant position. Christian people are a genus, but in this genus there are two great species, clergymen and laymen. In each of these species (which can then in turn play the role of genus), there are subspecies. The clergy is divided into bishops and priests, the laity into consecrated laymen (men in orders who are not priests), and laymen in secular life, and these latter groups are divided into men and women. A fine pyramid is created, from the summit where the clergy is to the base with its simple laypeople. This grand terrestrial hierarchy must then correspond to a no less grand celestial hierarchy. All the differences have a place on a scale of values. The common and equal nature as children of God in no way precludes different situations that are differently valorized.
Our example may appear ethnocentric since Roman Catholicism is not a universal reference point. The hierarchical model can also be illustrated by Indian caste society. The massive fact of social hierarchy by means of the caste system is too well known to need emphasis. We should, however, stress that it is only from a basis in diversity and differentiation that national integration is possible. The caste system is not, per se, antidemocratic. India is a democracy, a very specific one admittedly, but a real one. The hierarchy of status, inegalitarian in its very essence, does, however, leave room for the autonomy of the individual will. Each person is responsible for his or her acts. The principle of caste, like that of “states of life” in Catholicism, neither isolates nor encloses in a group that would dictate decisions to all its members. It opens onto a network of possible relationships in which each person must constantly take initiatives to improve or maintain his or her status, gain influence, build personal prosperity, and ensure survival. On the other hand, this maneuvering space around the hierarchized positions does introduce a real possibility for participation in a common life. The hierarchical model, because it has its point of departure in difference, is not incapable of permitting a modern form of integration and inclusion.
The example of India also permits us to comment on our opening words. Louis Dumont (1966) put the caste system beside holistic societies, which we in turn compared to those displaying mechanical solidarity. We said that this solidarity was characteristic of ancient societies. Yet it should be noted that the lines of reality are not so sharply drawn. It is not only that India’s holism is in evolution, for we are witnessing a living, contemporary society, but also that holism is not entirely synonymous with mechanical solidarity. There can be mixed forms and also very original forms of conceiving inclusion and possibly producing exclusion. This can be said in support of our intention to make a number of distinctions in a question as complex as that treated here.
The hierarchical model makes it possible to suppress differences by an initial acceptance of similarity, although one that is strictly controlled. This is, of course, a means of consolidating differences that already exist. Here we link up with the analysis of Robert Castel (1995), when he shows that throughout European history, the categories of “handicapology” are constant ones. There are always groups that, unable to meet their needs through their labor, are legally exempted from such labor and are assisted. The disabled have always been so seen. Even when they are not excluded, they have a well-established inferior position. Even if it is not impossible to break out of the category of the permanently assisted, both mental and social structures are, in practical terms, opposed to it.
Still, in the universe of differentialization, we meet a second model, that of juxtaposition. It is, no doubt, the most frequent in countries with a British heritage. This is the model with a degree of tolerance in the sense of accommodation. They are what they are, and we are who we are; their culture is that way, and ours is this way. We have no cause to subjugate them or render them inferior, but we really have nothing to do with them. The recognition of a difference is pushed far enough for each person to exist on his or her own, a stranger in the midst of a group of strangers. There is a certain kind of nationalism reflected in this model. Foreigners have the right to exist as long as they stay out of our space. There is no integration. It is a jigsaw puzzle, a mosaic, as much from the international point of view, which leads to the rejection of any kind of transnational organization, as from a state’s internal point of view, which leads to fragile unions (Yugoslavia). This model can be wedded to a form of democracy, as we see in the multiculturalist thought of the United States, but left to its own logic, it destroys all common space, and, within a nation, it would destroy its foundation. Federalism attempts to surmount the disadvantages of this model from which, in a certain sense, it issues. When groups, classes, or cultures are in simple juxtaposition, an opposition of values necessarily arises, which will hamper the social order and, above all, reinforce the preexistent social structure.
This model is more reflective of a possible tendency in the treatment of persons with disabilities than a policy that has been applied in history. Yet it would move in the direction of what we could call the “Indianization” of disabled persons, borrowing the example of reserves for Native Americans. Fortunately, the extermination of Native Americans has come to an end, a policy that placed them in a situation of radical difference, of terminal exclusion, but now they are situated apart, a sequestration in the very name of their difference. There are a number of people who would not be unhappy to exploit this form of segregation if it led to a purification, a purging of their group space.
In its most extreme form, which we will call differentialism, this model states that you are other and you have nothing to do with me, unless it is to submit to placement on a scale of values where I am more perfect than you. Let’s make no mistake, juxtaposition, like hierarchy, is a way of putting some people at the top and letting it be thought that these people alone represent the universal. Misfortune always follows when a social group (or a state or a nation) believes itself to be the sole realization of the universal, while the universal is only a panomara, all of whose aspects are singular. There can exist only parts of the universal. Once a people or an ethnicity takes itself for the universal, perversion is at work and can lead to the worst consequences.
Returning to the question of the deaf, a possible surplus of identity could shore up an exacerbated differentialism. The reasoning of the deaf, when taken to extremes, reflects the juxtaposition model but in a radical form that mixes two approaches that are not comparable. Deaf culture exists but has been forged, like all cultures, in the historical process. It is not a “natural” fact. On the other hand, the fact of being deaf, like being black or white or being a man or a woman, is a natural fact. Yet can we draw cultural consequences from a natural feature? This is all the more chancy when we recognize that this kind of confusion has served as basis for so much exploitation and racism: “They” have natural features of such a kind that they can have no part in our evolved white culture! Locking a group into its natural features amounts to establishing it in a closed specificity and preparing the ground for all the extreme forms of cultural identity, ultraculturalism, and even group fanaticism. By virtue of wishing to affirm our own identity—however undeniable it is—we risk being enclosed in our own ghetto and finding ourselves excluded at the very interior of the society to which we, by our own logic, belong.
To conclude our discussion of the contradictions and tensions of normalization and of the models of assimilation and differentiation, we shall summarize the different senses of inclusion and exclusion that we have met.
The doubtless, most dynamic notion of inclusion leaves room for an effort toward adjustment, acceptability and acceptance, and social participation. The notion of integration presupposes conformity and alignment, which are always experienced as the domination or even oppression of the group that defines the norms or of the majority over the minority. Being included may represent a situation in which you are a part, in an organic way, without necessarily being forced to conduct yourself according to a rigid norm.
Otherwise, inclusion (or insertion, as it is sometimes called in French, with a rather different thrust) can prove to be weak, a synonym for simple presence, simple admittance, and simple tolerance. One can be supported without being recognized. One can be received without being incorporated. We have seen that the semantics differ according to the sociological and linguistic contexts. Being fully recognized as an equal, a partner, or a participant with the same dignity and of the same quality as any other is called integration rather than inclusion. Yet these are translations of French terms, and what is true of one language is not true of all. We must perhaps resign ourselves to the impossibility of translating from one language to another terms that are charged with such historical and cultural weight.
In inverted fashion, exclusion in contemporary societies designates several phenomena: radical exclusion from society; segregation in society; discrimination, also within, as concerns access to social goods and spaces; and disaffiliation and withdrawal from social exchange.
According to historical times and praxis, inclusion and exclusion may take on differing significations. They are not univocal or unambiguous terms and are not historically fixed. There is diversity in exclusion and diversity in inclusion. We will illustrate this diversity and show the indivisible relationship between the two aspects by establishing a typology. To one form of exclusion corresponds another form of inclusion or, at a minimum, a certain tendency toward inclusion. This typology is necessary to do justice to a whole series of practices that we have thus far not been able to mention.
A Draft Typology of the Diverse Forms of Exclusion and Inclusion with Reference to the Social Treatment of Disability
In the first part of this chapter, we saw the multiple facets of inclusion and exclusion, both processes and states. The analysis of different models has made it possible to resituate these notions with reference to other theories of the social bond and its possible dissolution (marginality, deviance). Anthropologist Robert Murphy (1987) employs the concept of liminality to express the fact that in all societies, disabled persons live in a state of social suspension. They are neither ill nor well, neither dead nor alive, neither really excluded nor really included in society (Murphy 1987).
These failures of inclusion or integration that may be experienced by disabled people are translated as the loss of or difficulty in access to a place in society, as a permanent move to the sidelines. The study of the historical treatment of disability (Stiker 1982, 1999), as well as anthropological studies of this same theme (Ingstadt and Reynolds Whyte 1995), show that the exclusion of disabled persons through time and across civilizations has assumed and still assumes extremely diverse forms within the host society. We shall then try to draw up a typology of different forms of exclusion, whether they are social, geographical, economical, cultural, or judicial while comparing the forms of inclusion that seek to offset them.
From the more radical forms of exclusion, such as extermination or abandonment, there is a continuum representing exclusion from society to the diverse forms of exclusion within society, through segregation, marginalization, or discrimination. We can observe that each of these types of exclusion, even if it has been characteristic of some ancient society, nonetheless displays survival in our contemporary Western societies. Moreover, it appears possible in such a typology to establish correspondences between each form of exclusion within society and a form of inclusion in it.
Exclusion through Elimination
The most extreme form of social exclusion is death. One of the first types of exclusion that can be identified is exclusion through elimination. The elimination of disabled persons can be effected in a direct way by putting them to death or indirectly through abandonment or the deprivation of care. We may also consider that elimination, not of persons but of disability, may be considered before life. This raises the timely questions posed by the termination of pregnancy when a deficiency is identified in the fetus and even before conception with the latest developments in genetic engineering. Eugenicist theories show the possible link of continuity between the practice of elimination in ancient societies and the praxis of contemporary societies linked to the most recent technological developments.
This radical form of exclusion of persons with disabilities, the ultimate one, is then situated at the level of the most fundamental principle, that of life itself. In Greco-Roman antiquity, the practice of exposing deformed infants offers an example. The fear of seeing the species deviate from its true course (eugenicism) is projected onto deformed births, even if such deformation is to modern eyes quite minimal. Such births are interpreted as a baleful sign sent by the gods that must be officially expelled from the social space and returned to its senders (Stiker 1997, 1999). Infants coming into the world with deformities are left outside inhabited space, on fallow land, in a rut, or along a stream. In short, they are not socialized. Although they are not sacrificed in a formal rite of immolation, they are ritually abandoned. This practice, which we are not encouraged to believe was ever implemented on any massive scale, given what we know of the cities of antiquity, is a form of elimination, even if we could in one sense connect it with abandonment. The myth of Oedipus, one of the founding myths of the West, certainly constitutes one of the best illustrations of the ancient practice that was exposure.
However, it is probably Nazi Germany that offers the most extreme example of the extermination of disabled persons. Thus, some 200,000 people (in particular, those with a mental illness or congenital malformation) were exterminated in the hospitals and death camps because of their disability (Burleigh 1994).
From another perspective, the ethical debate over euthanasia or assisted suicide deserves to be mentioned here as representative of the most current way of reposing the question of the elimination of disabled persons. “Quality of life” has become a key notion in public health, and some economists will go so far as to speak of the “price of human life.” The value accorded to human life is conditioned by social representations of disability and, in our Western societies, is influenced by the existence of severe forms of impairment. This value may be judged negatively, with life under certain conditions being considered not worth living, which then justifies a certain number of medical practices that surround the beginning or end of life. On such a basis, it becomes possible in some countries to put a person to death in fully legal fashion. What is under discussion here is not, of course, the freedom of individual choice of life or death for a severely impaired person but the fact that social pressure, by reducing disability to a dimension of personal tragedy, makes it acceptable to accommodate disabled persons in their desire for death. Death, in this sense, is qualified as “natural,” whereas for nondisabled persons, everything would be done to convince them of the transitory nature of such a wish and to prevent any attempt at suicide. In other words, the latter group is considered depressed and treated as such, while members of the former will possibly be offered themselves in suicide the help that they were unable to obtain in daily life.
Even though these are interventions before birth, it is possible to include medical measures that aim at precluding the birth of a disabled child in this discussion of exclusion through elimination. These methods share the radical nature of the foregoing and raise the question of the very humanity of disabled persons. A decision to terminate a pregnancy through medical means can be taken after prenatal diagnosis or a strong presumption resulting from an echography of a fetus anomaly or a risk of birth of a disabled child. With new genetics and preimplantation screening, it becomes possible to identify a certain number of genetic diseases even before pregnancy. The question of elimination can be raised in these terms, and we then speak of the eradication of Down syndrome or muscular dystrophy, for example. Thus, we could see societies emerge that have been “cured” of certain genetic diseases, but this prospect is accompanied by a certain concern over the limits that will have to be put in place to regulate such an evolution. Certain associations of persons with disabilities may have spoken in this context of genocide and crimes against humanity.
The eugenicist perspectives opened by the possibilities of genetic screening are certainly among the most difficult ethical problems that democratic societies will have to face in the near future.
Lastly, the sterilization of mentally disabled women, which has occasionally been practiced, although often illegally, can also be associated with these measures addressing procreation.
Exclusion through Abandonment
The practices of abandonment can be distinguished from elimination by the fact that they do not entail death or at least not in such direct fashion. Practiced in antiquity, the form of exclusion through abandonment recurs in contemporary forms of social death—social abandonment.
There is no lack of examples of the practice of abandoning people: children born deformed, victims of multiple injuries, and very dependent elderly persons. Abandonment can take different routes; it can be the transfer of parental authority to another agency, leaving in God’s hands the fate of a new born, but the more modern fashion is anonymous delivery in view of adoption.
Abandonment, then, is not something specific to ancient societies. A French study has shown that parallel to the increasingly widespread success in the prenatal diagnosis of Down syndrome, the number of such infants who are abandoned at birth has increased in France in recent years (Dumaret et al. 1998). The hypothesis can then be advanced that more wide spread prevention methods are accompanied by a decrease in the social acceptability of this type of disability.
To abandon something or someone is to cease to be concerned with it, to deprive it of care. Here we return to the question of passive euthanasia, which consists of no longer providing all possible care to a newly born infant, an accident victim, or an elderly person when he or she is considered as too severely disabled or risk becoming so.
The surplus population thesis has been advanced as one of the chief explanations of exclusion by abandonment (Oliver and Barnes 1998). The evolution in European thought in the nineteenth century, with the emergence of liberal utilitarianism and social Darwinism, raises the question of the place of individuals who are too weak, too dependent, or incapable of meeting their needs without assistance.
Decisions not to attempt resuscitation and to disconnect life support systems are certainly the modern face of this form of abandonment, which quite simply consists of ceasing to look after someone. We can also see that the duties and responsibilities of family and of society may diverge here.
Exclusion through Segregation or Differentiated Inclusion
Segregation and the various practices of sequestration constitute one of the most widespread forms of exclusion. This geographical exclusion, in the generic sense of the word, can be found, with immediate topical relevance, across eras and cultures. This is also a form of social treatment that, by clearly setting out an inside and an outside, is very close to the basic meanings of inclusion and exclusion. The point here is that this separate treatment does not necessarily occur outside the community but frequently at its very center. Lastly, we may note that this kind of segregation may be more or less constraining and may entail a greater or lesser deprivation of personal freedom.
In his L’histoire de la folie à l’âge classique (A History of Insanity in the Age of Reason), Michel Foucault (1961) describes in convincing detail what he calls, after the creation of the Hôpitaux Généraux in France in 1662, the Great Confinement of the seventeenth century. Most European countries have known a parallel evolution, such as Britain with its workhouses.
The first institutions for disabled people were often intended for the deaf and the blind. The confinement of the mentally ill or deficient against their will (legislated in 1838 in France and 1845 in Britain) is a particularly characteristic example of the kind of social control that would henceforth be imposed on this population through the power accorded to physicians. In Western European countries, this movement toward the institutionalization of disabled persons would last until the 1970s.
In the sphere of disability, the term institution, which we relate to the question of segregation, refers to a kind of establishment that is most often structured on a residential basis to treat, train, and intern disabled people. Thus, it has been possible to speak of total institutions (Goffman 1961). The institutions created by the first educators in the domain of persons with infirmity are of this type. The Abbé de l’Épée (1712-89) founded a school for the deaf, with whom he learned to make himself understood by means of sign language. Valentin Haüy (1745-1822) founded the Institution for Blind Children (l’Institution des Jeunes A veugles) in Paris and conceived of letters printed in relief that would permit the blind to read, before Louis Braille (1809-52), a blind teacher, devised the systematic code that still bears his name. In the same period, Jean Marc Gaspard Itard (1774-1838) tried to educate a feral child, Victor of Aveyron. His failure in this attempt did not prevent Édouard Séguin (1812-80), his successor, from inventing a pedagogy designed for mentally retarded children. The creation of special establishments—which Séguin promoted in America, especially since he was poorly received in France—was based on the segregation model, despite their passion for education, in the broadest sense of the word.
Similarly, Philippe Pinel (1745-1826), well known for having freed the insane from their chains, affirmed the curability of the “mad” and laid the basis for modern psychiatry. However, he did not envisage his famous “moral treatment” other than within the sequestering walls of the hospital. In our time, the greater part of treatment, placement, training, and education is still effected within the framework of institutions. Severely criticized by the an tipsychiatry and deinstitutionalization movements, such as at Basaglia in Italy, institutions have been the object of heated criticism on the part of numerous organizations of disabled persons. Thus, in Great Britain, the Union of the Physically Impaired against Segregation (UPIAS) describes segregated residential institutions as the “ultimate human scrapheaps.” It adds that thousands of people, whose only crime is being physically impaired, are sentenced to these prisons for life…. For the vast majority, there is no alternative, no appeal, no remission of sentence for good behavior, no escape, except the escape from life itself. (UPIAS 1976)
One of the constant features of the institutionalization of disabled people has been the separation of the sexes. This repression of sexuality, thus precluding all procreation, can be associated with the practices of sterilization and the eugenicist issues treated above. It must be stated that the theories of degeneracy that were developed in the nineteenth century saw a major solution to such degeneration in barring disabled persons from reproduction. If the decline of institutionalization was furthered by strong advocacy based on humanistic arguments, it is probable that economic arguments and the waning of the welfare state really precipitated this evolution. However, this segregating institutional environment was part of the matrix that generated the movements of rebellion and protest by disabled people against these structures, which they considered primarily responsible for their oppression, and their will to gain control over services that concerned them.
This form of exclusion through segregation may also affect more limited aspects of social life, such as education, employment, and transportation. Thus, there are specialized schools for disabled children, sheltered workshops for disabled workers, and specialized forms of transportation for persons with disabilities.
One of the paradoxes is that what is often seen as a segregating “detour” (e.g., in the form of temporary separate schooling) is often presented as having integration as its ultimate goal. In fact, such segregation is today most often conceived of as a provisional bypass to regain the mainstream, to participate more fully in society, even if it should happen that this detour never does come back around. Thus, the intention is not to exclude but to include at a future date. The goal of sequestration is no longer confinement, as in the seventeenth century, but a mediated inclusion.
Exclusion through Assistance or Conditional Inclusion
The reference to employment and productive capacity permits us to address another form of exclusion—exclusion through assistance, an “economic” form of exclusion, which has permeated the entire question of social policy since the end of the Middle Ages. In fact, the lot of the crippled is linked to the social treatment of poverty during the entire medieval period.
The distinction erected in the countries of Western Europe since the Middle Ages between the meritorious poor, who included persons with deficiencies as well as the able-bodied indigent, sought to distinguish those who were exempt from work and those who were obligated to it. For the former, recognition of incapacity would open the way to the possibility of being assisted. Measures to combat begging condemned the second group to repression: deportation, forced labor, and the banishment of vagabonds.
Assistance is a form of close-up protection, intended, for example, for other inhabitants of the village, and concerns those who by virtue of their inability to work cannot meet their needs. Christian values, including charity, dominate what we may call the Christian West. Disability recalls the suffering of Christ, and the charity that it stimulates enables practicing Christians to atone for their sins. The church plays a major role in the development of individually targeted assistance, initially through the intermediary of its convents, monasteries, and other religious institutions and then through specialized institutions such as hospitals, hospices, and orphanages. This protective role of the church was also an aspect of its power. Until the French Revolution, the church may be said to have been the principal organ for the provision of assistance. The counterpart to such aid is that disabled persons were obliged to show the most complete humility toward their benefactor.
Welfare activity and good works marked the history of the social treatment of disability until the twentieth century.
If the relationship to work is a determining factor in understanding the economic role of disabled people, work represents, beyond its connection with production, a justification for inscription in the social structure. Thus, failure to participate in any productive activity and isolation from other human relationships combine their negative effects to generate exclusion or rather disaffiliation (Castel 1995). Inversely, the combination of stable work and solid functioning relationships creates the conditions for integration. Between the two lies a zone of social vulnerability.
Assistance is a form of economic exclusion that defines those who are “useless to society.” It also introduces a relationship of subordination and dependence between persons helped and their benefactors. The individual so aided is divested of all responsibilities, such as that of working in exchange for submission to a status of inferiority. This surrender of obligations or “irresponsibility” is the source of marginalization and calls the very idea of citizenship into question.
Some theorists of disability consider that exclusion from the world of work is the ultimate cause of other, differing forms of exclusion that disabled people experience (Oliver and Barnes 1998). Some among them argue that criteria for citizenship cannot be based in social unusefulness. The passage of assistance into the secular sphere did not resolve this inequality of position, which is now being challenged from the perspective of civil rights. On the other hand, present-day dissociation from systems of economic production often entails exclusion from systems of compensation and social protection.
Assistance or, to invert the terminology, social security and welfare are admittedly weak forms of participation in society. They confer a social substatus. Yet to assist is not to exclude because those who are helped are part of society by the very fact that society is concerned about them. At times, as during the medieval period, this substatus is even necessary for the well-to-do because it offers them the opportunity to win eternal salvation. However, those helped are part of society only on condition that they stay in their place. Georg Simmel (1908) has clearly shown that poverty does not consist of being without resources but of being assisted, with such assistance being the very means of ensuring social cohesion on this level. Assistance is basically a sociological relationship and has an indispensable function. This is why social assistance policies do not have the elimination of poverty as their objective, as one might believe, but its integration into the system, to the benefit of the latter.
Exclusion through Marginalization or Inclusion through Normalization
In the precise sense of the word, marginalization is the process of moving to the side as a consequence of a refusal to accept or of an impossibility of accepting currently recognized rules of operation. The marginalized are defined by transgression of or protest against the values and habitus of the community. Whether it is a decision to put oneself outside boundaries (e.g., the criminal, the panhandler) or rejection by the dominant group (e.g., the prostitute, the teenager whose parents’ oppression forces him or her into delinquency), marginality is always characterized by a lifestyle that cannot be accommodated within the behavioral norms that are in force. Its origin may lie in a conflict over rights (rights recognized and rights denied), in the absence of rules (total permissiveness on the part of parents, leading youngsters to set up their own rules), or in a conflict of values (a person no longer wants to live according to the law of consumption and goes into self-imposed exile in a autarkical way of life). Disabled persons who may find themselves rejecting norms that are applied to them or who are rejected for not “playing the game” are susceptible to being drawn into this process of marginalization. Yet this is not the general case because their desire for integration in society most often makes them accept the common rules. The fundamental problem is that of norms. To be included, you must achieve and accept a certain degree of conformity.
The key concern of rehabilitation (called réadaptation in French) is to reduce this deviation from the norm. Action on the individual who is to be reintroduced into the mainstream is accompanied by the desire to efface any difference. The individual must act “like others,” even if this requires technical aids, various devices, or prostheses.
However, this same concern to reduce deviance laid the groundwork for the kind of normalization procedures developed by Wolfensberger (1972) for mentally retarded persons.
Exclusion through Discrimination or Progressive Inclusion
The last type of cultural or juridical exclusion that must be addressed is exclusion through discrimination.
To discriminate is to single out, put a social group to one side, and restrict its rights. These distinctions made in social life at the expense of disabled persons may be judged unacceptable because they violate social norms and the principle of equality before the law, even if in other societies and at other times they are or were current.
To define discrimination as the act of treating equal individuals inequitably shows to what extent this concept is tied to modern society, which puts equality at the center of its code of values. In societies based on differences in status or caste, discrimination is a neutral, descriptive notion, devoid of all pejorative connotation as we in Western societies would see it.
With the development of civil rights, most modern democracies instituted judicial protection against negative discrimination as a function of criteria relative to the impairments of an individual. If the intentional discrimination of individuals is then proscribed in the United States, Great Britain, Australia, and New Zealand, this does not preclude, in these very same countries, the existence of statistical discrimination on the level of the population of disabled persons. It has thus been possible to show that in France, despite a law promoting the employment of disabled workers by means of an obligatory quota system for both private and public sectors, disabled persons continue—all other things being equal—to experience discrimination in their search for employment (Ravaud, Madiot, and Ville 1992).
However, discrimination may also be positive and have the restoration of equality as its goal. It is interesting for French researchers to note to what extent the current English phrase affirmative action differs in this respect. Positive discrimination can be effected by social assistance measures in cases determined according to extrinsic characteristics (tied to income, for example). It can also be ensured by authoritarian measures (which raises the question of personal freedom) or by preferential measures (e.g., policies of employment quotas favoring disabled workers, women, or certain ethnic minorities). It may also be conceived of as a compensation measure and justified on the basis of distributive justice, which is not without its paradox because it is not the injured individual who benefits from the compensation (Auroux 1990). It has an inherent defect since it necessarily arises only after negative discrimination, in that it must temporarily violate the principle of equality on which it is based. It can thus be defended for reasons of social utility (the employment of disabled persons may at times be part of a company’s communications and public relations policy).
We can see the contradictions inherent in the principle of nondiscrimination, which tends to be generalized. In the struggle against negative discrimination, it makes vulnerable the systems that are based on protective and compensatory measures.
The principal question that is posed today in Western countries is the nature of the citizenship that disabled persons may enjoy. Modern politics excludes the possibility of distinguishing among different categories of persons in the public sphere. Behind these questions of discrimination and exclusion, we discern the principle of equality of citizens before the law as the moral ideal of a democratic nation. We do well to state precisely the limits of this equality before the law: right to identical treatment, right of access, right to equal opportunities, and right to an identical quality of life. We can see to what extent, in a society that has become segmented, that the perspective that is assumed will depend on the conception that we have of justice and social inequalities.
This typology is of course quite schematic, and there are numerous intermediary forms between each of these modalities of exclusion and inclusion. Thus, the very existence of people who are judged to be socially and economically useless is deeply interwoven with eugenicist practices of elimination. Discrimination is not just cultural or judicial exclusion but also economic exclusion.
However schematic, this typology makes it possible to identify differences in the reactions of cultures to anomalies such as impairments—reduce them, control them physically, avoid them, catalog them as dangerous, or adopt them as rituals—as described by Mary Douglas (1966).
Exclusion needs to be perceived from a global perspective that encompasses the view of the excluded and that of the entity that rejects him or her. Because, contrary to contemporary representations, exclusion is not an abstract, inexorable phenomenon, without actors, nor is it ultimately an inevitability due to entry into a new global economy. As Norbert Elias (1965) illustrated in his study of the logic of exclusion, it is clear that exclusion is also inscribed in a society’s power relationships.
Lastly, the tension between the two approaches to disability policy that we have characterized as differentialist and universalist is not without consequences for the social situation of disabled people. The first calls for a right to difference—for specificity, even a minority group identity—and the second invokes the universality of human rights and rejecting all particularism. The former carries the latent risk of segregation, the latter of inequalities.
A Challenge to Democratic Societies
The models of exclusion and inclusion that we have reviewed, as well as the multiple forms of integration and segregation, raise the fundamental question of what form true democratic inclusion would take. According to us, addressing this question offers the real prospect, the real future for a just stance on the issue of disabled persons. The word just must be understood in its two senses of justice and justness, that is, cover what is theirs by right and was is right for their specific case.
We shall base our discussion on two thinkers who have recently sought to conceive of a way beyond the opposition between the policy of assimilation (whose proponents are called “liberals” in the United States) and the turn inward to group identity issues or communitarianism. Kymlicka (1995), whom we would qualify as a moderate liberal, attempts to find room for expressions of collective identity, taking as point of departure the irrefutable principles of individual citizenship. Charles Taylor (1992), on the other hand, who would be a similarly moderate communitarian, looks for ways to recognize publicly specific cultures without neglecting the equality of citizens. We shall not develop these lines of thought here, centered as they are on the problems of cultural communities relatively linked to the North American context. Yet it is important to see how the search is being conducted—by Michaël Walzer (1988) as another example—for a differentiated citizenship, a democracy of participation, the conjunction of individual citizenship with a policy of support for minorities and singular identities—in short, a democratic pluralism.
It seems that, to a greater or lesser degree, these forms of relating to the “other” have in turn or at the same time been able to exert influence on the way the disabled are treated. Their lot seems to have always swung between subjection, indifference, and denial. Denial is apparent in the older forms of radical exclusion or in the more modern forms of unnuanced segregation and also, very subtly, in the form of a passion for assimilation through normalization at all cost. Subjection is shown when the crippled served some “other purpose”: offering salvation for the charitable, playing the fool, being exhibited as freaks, or, in more contemporary fashion, partaking of policies for population management, business, or justifications for the existence of the disabled service industry. Indifference, when placed in what Murphy (1987) calls liminality, is neither included nor excluded, neither rejected not accepted. Either the disabled are left to the care of the welfare establishment according to a roundabout principle of nondiscrimination, or they are protected and assisted according to the arrangements of a compensatory discrimination that are not brought to a full conclusion.
The positions adopted by disabled persons themselves may favor one model or another and entail the perverse side effects of each. Minority activism at times takes on the trappings of overdriven differentialism, as discussed above. Will Kymlicka’s (1995) idea, according to which the recognition of separate collectivities would not be unconditional and according to which the individuals of a group ought to be free equally to enter and leave it, would be to propose a kind of communitary extremism.
Inversely, one form of discourse on the abolition of differences and the claim to be like others may derive from an as similationist model that is not just euphoric. There is also a way of stressing the “social model,” which is not without its drawbacks. The social model has become the means of referencing a train of thought that tries to think of disability from the side of the social barriers of every order that constitute it, by abstracting its corporeal and individual dimension (Barton and Oliver 1997). It is the state of society alone that creates disability, its material and mental state. Even if the diffusion of this model has had undeniable pedagogical merit by throwing into relief dominant social praxis, the risk now is of “disembodying” disability by neglecting its corporeality and the dimension of individual experience. Once the social barriers are abolished, what would be left of disability would be only banal differences (moving in a wheelchair instead of walking, not recognizing certain communication signs but having others in their place). To approach disability from the quarter of impairment is to see it upside down and to attribute difficulties to the individual, which, when we think about them, have to do only with the managing “in act” of the environment. If we followed this logic to its end, we would come to a common space that we could, metaphorically, call so desexed that all expressions of particularity, including cultural ones, would be swept away. In the name of individual citizenship, there would no longer be any collective identities. In fact, if we assert our disabled identity, with a view to abolishing social barriers, we presuppose a certain collective identity; otherwise, there is only a swarm of individuals. Under which flag would people then gather? It seems that it is impossible to disregard the fact that two poles have to be maintained: civic universalism, on one hand, and groups and differentiated individuals, on the other. What is fundamental in the struggle to abolish social barriers and in advancing the claim to be like others is to reassert the need to create truly common social space and truly common access (a universal design). What is fundamental in the affirmation of a certain specific identity is to obligate this social space, which will never be an incarnation of the universal, to compensate on an ongoing basis for the weaknesses of certain people by putting at their disposal what they need to occupy, just as they are, this common space.
To take the example of schooling, disabled children would have their specific needs met but within the framework of regular classes and classrooms, with all the necessary support. As Stainback and Stainback (1990) write,
Full inclusion does not mean that special educators are no longer necessary; rather it means that special educators are needed even more to work with regular educators in teaching and facilitating challenging, supportive, and appropriate educational programs for all students. However, special educators do need to be integrated into, and in effect, become “regular or general” educators in the mainstream who have expertise in specific instructional, curricular, and assessment areas. (P. 4)
The example of schools clearly shows the concrete applications of what we have formulated in more abstract fashion. We could go on at greater length concerning the business world and daily life. Imagine if we introduced a sufficient number of professionals trained in disability into work environments so that accessibility became total; all the structures of sheltered employment would become useless. What is necessary in this utopian vision is the conversion of corporate officers. Yet having a utopia before one’s eyes is not without its effects, as history shows us. Let us imagine that in city neighborhoods, “social workers” were present on a daily basis, discussing and working with all the vital resources (associations and various service agencies) and with all those who were active there (storekeepers, trades people, professionals). Many disabled persons could maintain themselves and live among others. Daily democracy has a fine, wide path ahead of it. The necessary precondition for the progressive realization of such a utopia is the existence of political will. The role of the citizen is indispensable here in influencing elected representatives and administrative officers but also in convincing groups of disabled people to move openly and boldly in this direction. We are often very short of the mark. All the more reason to get started.
In the meantime, many efforts already begun must be reaffirmed and amplified: the creation of services to accompany children and their families throughout the schooling process; the development of ergonomic services (in the widest sense of the term) to adapt urban spaces, transportation, and work stations; the training of professionals in the areas of public health and social work in the issues of disabled people; public advocacy campaigns to combat stigmatization, prejudice, and stereotypes; and the presence of well-informed persons at the moment of birth of a disabled child. We cannot give an exhaustive list.
This model is a challenge for what we as French speakers would call any truly republican, truly democratic space: to establish relationships that presuppose and respect particular terms of existence, invent various combinations of such terms, and take into account all forms of alterity. If we wanted an image for such a model, we could find it in language where all the differences (since there is only that) oppose and interconnect with one another to constitute meanings, meanings that are always open since the combinations are infinite. In turn, each language, however alien to the others, can still manage to be translated into another language, not completely transferred but translated, with some of the inevitable betrayal of original meaning. Disabled persons cannot be reduced to a social identicalness (the deviant, the marginalized) or to an identity based in able-bodiedness. Their existence in the world is singular (and singular in differing ways, depending on the persons and their impairments), but they can translate our experience into theirs and vice versa.
It should be possible to install a common, shared space where there would no longer be any hierarchy but where we would no longer be separated, without being reduced.
This is what Diderot envisaged in his famous Lettre sur les a veugles à l’usage de ceux qui voient (“Letter on the blind for the use of the sighted,” 1749), when he shows that Saunderson, or the celebrated blind man of Puiseaux, was an “anthropological variety.” This is what a literary critic, well experienced in disability, expressed at the end of a conference devoted to the topic of disability in literature:
In light of all this, it should be evident that traditional literary images of the afflicted contribute little or nothing toward creating attitudes which might make possible in actuality a society in which the disabled would be recognized as representing not some absolute, unendurable Other, but one pole on a human spectrum, in which differences of perception and agility separate not merely one individual from another, but one stage from another in each individual’s life: from the total dependency of infancy to the gradual crumbling of our powers in old age…. In such a utopian society, worked for as well as dreamed by committed professionals and amateurs of goodwill, all means of information retrieval and transport would be redesigned to accommodate such differences. And on a psychological one, even the most debilitating handicaps would be perceived as constituting not a departure from but another assertion of the almost infinitely varied human “norm.” Even pain and early death would come to be faced head-on, tragically and joyously, rather than sniggered at in embarrassment, turned away from in terror or denied in pity. (Fiedler 1982:68-69)
We have chosen to address the question of exclusion and inclusion as evidenced in the principal forms of “relationships with others” in our organic societies, which have to create their own processes for cohesion and social equalization. Limiting ourselves to what could be called the primary degree of opposition between exclusion and inclusion would have been only to skim the surface of the attendant phenomena.
Evidence supports the notion that every citizen—and certainly even more a disabled citizen—is excluded from some places, from some social goods, and even from some rights (to culture, leisure, education), at least in part. Intolerable as this may be, it is proof that society is not egalitarian. This is the rationale that justifies the present claims and the concrete action toward their realization. Persons with a “disability,” more than any others, are the living proof of iniquity and inequality. On this level, the specifics of inequality between the able and the disabled are of degree and not of nature. We are all targets for inequitable and unjust treatment—disabled people often to a greater degree than others. Still, the struggle for disabled people is of the same nature as for all those who do not have the access to social goods that is their due. It is the social dimension of citizenship that is called into question.
The most serious question is to ask whether the “rights to” (to free expression, to freedom of movement, to the vote)—that is, the universal rights of human beings—are being denied to the disabled. In certain countries, perhaps, but doubtless also because they are being denied to all individuals. In countries where citizens have rights, these specific rights are not being denied to disabled persons, even though certain guardianship systems could be criticized from this perspective. The disabled are not excluded from “political” citizenship.
As we can see, analysis does not support a brutal assertion to the effect that “disabled people are excluded people” because exclusion itself is a process. It can take different forms, always relates to a social context, can be effected by degrees, and can be common to many other individuals and groups.
On the other hand, situating the issue of disabled people with reference to models, schematics, reference points, the principles of a given society, and so on has the advantage of greater intelligibility. This is the case not only because, as in the preceding instance, the persons with disabilities are situated in a global movement of which they are the symptom, but still more because neither their singularity nor their quality as citizens is effaced.