A calamity or a fecund experience?

In perceptions dominated by the conception of a malevolent influence, the disability is considered to be an absolute evil, an abnormality, a biological deviance and, at the same time, a social deviance. It becomes an object of devaluation, of humiliation and shame, becoming synonymous with stigmatisation, exclusion, and death. It is seen as a calamity, a radical non-sense; an absurdity, an abjection nothing could justify. The person affected is seen by others as being socially devalued, out of sync, and feels that, too, within himself/herself.

Conversely, as part of a more benign outlook, the disability may have a positive meaning bestowed on it. It fulfils an irreplaceable social balancing out. It makes for an especially fecund and meaningful experience, entailing knowledge, transcendence, and transfiguration of oneself, an opportunity to discover the invisible mainsprings of forces that emerge from vulnerability itself (Gardou, 2009).

Is there a certain unity beyond cultural diversity?

Beyond the multiplicity of cultural roots, discontinuities, and dissemblance, can forms of culture that are recalcitrant to uniformity nevertheless show a certain unity? Their system of perceptions of disability is, here as elsewhere, a cultural construction that is handed down, learnt, and interiorised from early childhood: a kind of common good.

Without for one moment denying the objective reality of physical, sensorial, mental, cognitive, or psychic deficiencies, whether congenital or acquired, likely to lead to a disability, the latter also stems from a cultural background, inherited, modelled, and woven from historic, social, relational, religious, economic, and political elements. It is a total social phenomenon (as Marcel Mauss would have put it) that can only be grasped in the real-life situation. How they are looked on depends, primarily, on the cultural context, as Michel Foucault so luminously showed in Madness and Civilization (Foucault, 1965). Its interpretation is never solely individual, but depends on a social order, that is, above all, a mental order. The latter, being determined by culture, relates to the quest for a meaning faced with the enigma that is Man. Indeed, if there is one search for meaning that affects every individual in any culture, then it is the possibility of disability, latent or fortuitous, that haunts us with a sense of dismay.

The system of perceptions takes root in the deepest strata of a culture. What is more cultural than that? Under the outward appearance of what is natural, it is difficult to disaggregate. The system encompasses forms of thinking into "normality" and "abnormality", theories, profane, institutional, or scholarly discourse, beliefs about disability, ideologies and values brought into play. Culture here plays a crucial role, much like a printer that draws and prints characters point by point. While the members of a particular society are differently influenced, they still tend mostly to fit into the mould, generating a new vein of unconscious constructions and other collective illusions.

Within a culture, the common belief thus creeps into individual thinking, irradiates it, and, to a certain extent, shapes it. Psychoanalysis, a discipline so complementary to anthropology, teaches us that bonds are close between the individual's unconscious and the social unconscious as defined by norms. Although human beings do not behave exactly like bees and ants, there nevertheless prevails a form of regimentation of personal and social life. This entails that each culture has its own way of defining markers to govern relations with people affected by disabilities. Marcel Sendrail (1980) wrote in his Histoire Culturelle de la Maladie that each culture makes claim to a style in terms of disability much as it does in matters of literary, decorative, or monumental style.

Only distorted echoes of the disability actually reach us, warping our vision, generating divisions and exclusion. Plato's famous allegory of the cave in Book VII of The Republic springs to mind. The men confined and shackled underground only know of things, of others, and themselves what they see in the shadows thrown by the fire on the part of the cavern wall facing them. Similarly, when confronted by disability, our minds are clouded by the sediment of mythology and the deeper alluvium deposited on the collective unconscious. These handed down beliefs prove to be much more pervasive than the objective observation of the eminently pusillanimous nature of human beings. Their strength and the difficulty in overcoming them derive first from their mythological and collective nature and, second, from the fact that their foundations are so rarely challenged.

It is, therefore, hardly surprising that it is so difficult to gain release from the cultural chains that bind a society together; tearing oneself away from the established format to question the particular vision of disability that a culture "imposes" on its members; ridding oneself of common perceptions; dissenting to accede to "transgressive", individual thinking. People's anxieties stem as much from the culturally constructed nature of disability as from its objective reality. Wherever they are in the world, they fail to make it "natural", to consider it as an eventuality in their existence and accept their fate in resigning to the failing or inadequacy. This "threatening" situation symbolises a wound, within themselves and outside them, they can no more succeed in eliminating as admitting. It "strikes" the person and their broadest environment, disrupting the reigning cultural order. It corrupts the ideal rooted in any culture that specifically delimits conformance and defines deviance (Durkheim & Mauss, 1903), elaborates categories, makes sure people comply with them, generates and maintains processes of interaction, opposition, and relegation to otherness or segregation.

In most cultures, people affected by disabilities are condemned to follow a separate path, to live out of the way (atopically), with no real place in the social structure, sometimes surviving as beggars. They are physically present but destined to live in a world outside, away from the general flow of life, corseted by myth and phantasm, or even physically strait-jacketed, in all events hampered from taking part in society.

While, according to the culture, some disabilities are more devaluing than others, none escapes from opprobrium. Wherever it may be, disability concentrates Man's eschatological fears such that those who experience it on a daily basis remain, to varying degrees, prey to an imaginary world nurtured by immemorial and deep-rooted fears. A constellation of images deforms their existential reality, compounding the "handicap". This results in them suffering from that form of alienation that Erving Goffman (1975) calls a negative, spoiled identity: a "handicapped identity" produced by the culture of belonging that impresses on their minds and bodies the representation it makes of them.

Such is the universal conundrum in thinking out what makes Man whole and accepting the human condition as it is, not as we would imagine it to be.

As can be seen, the multiplicity of cultures and religious beliefs, in which so many varying conceptions take root, nevertheless fails to erase the underlying unity of any human experience. The best shared thing in the world is maybe the anguished confusion human beings feel when confronted by their vulnerability, of which disability is just one of the many expressions, with various ways of evading, warding off, or evacuating it, but with ever the same paradoxical dream of being relieved of their common humanity.

< Prev   CONTENTS   Source   Next >