Defining disability

The category disability is not fixed and absolute, but can be, and indeed has been, defined in a variety of different ways throughout history, within particular societies and in any given social context. The fact that definitions of disability are relative rather than absolute have led some sociologists in particular to conclude that disability can only be properly understood as a social construction.” (Oliver, 1989, p 6)

The term ‘disability,’ as it is commonly and professionally used, is an absolute category without a level or threshold. One is either disabled or not. One cannot be a little disabled any more than one can be a little pregnant.” (Davis 1995a, p 1)

Disability has been used as a rational pretext to justify discrimination against and exclude minority groups from mainstream activities throughout history. As Douglas Baynton notes, although disability has functioned as “a sign of and justification for inferiority” among minority groups, rarely have such oppressed groups “denied that disability is an adequate justification for social and political inequality” (2001, p 34). Women were prevented access to politics since they were considered ‘weak’, ‘irrational’ and ‘excessively emotional’, but the suffragist argument did not refute the notion that disability was in fact a valid reason for exclusion, rather that they had been wrongly lumped together with others who were excluded on legitimate grounds. As such, disability as grounds for exclusion was not challenged.

In the pre-modern era the ideal was ‘natural’ since it conformed to the notion of God as Creator and harked back to the paradise of Eden, the origins of Nature and mankind. The opposite of the natural was the ‘monstrous’. With the rise of the sciences, industrialization and the belief in progress, humanity began to assert control over nature and look forward rather than backwards. As such, the concept of the ‘normal’ began to replace that of the ‘natural’; its counterpart being the abnormal, or the ‘defective’. In an era where the development and perfection of humanity were seen as crucial goals, any physical or psychological abnormalities were regarded as reversions to earlier evolutionary stages and had the potential to drag mankind back towards nature and its ‘animal origins’. This was justification for discrimination against ‘savages’ and ‘primitive’ races, while stating the case for colonialism since their “debasement of mind… rendered the people of Africa unable to take care of themselves” (p 37, quoted from Samuel A. Cartwright, “Report on the Diseases and Physical Peculiarities of the Negro Race”, The New Orleans Medical and Surgical Journal 1851:691–715). This explains the original term ‘Mongolism’, used to refer to Down syndrome, since the physician who first identified it believed it to indicate a reversion from Caucasian to Mongol race. Deaf children were prohibited from using ‘primitive’ sign language in an attempt to normalize them, which as Sacks (1989) and Davis (1995a) have pointed out, was inhumane treatment since sign is a language with its own grammar and syntax, while intermarrying between deaf people was prohibited on the grounds that a proliferation of congenitally deaf children would result in the decline of humanity (as claimed by advocates of eugenics).

In a similar way to how impairments were regarded in antiquity, black skin was viewed as defective, likened to a birthmark over the entire body and signifying transgression or immorality. The fact of racial and sexual superiority was put down to evolution – women and blacks were by definition less evolved, therefore deficient in adequate intelligence or physical capabilities that would allow them to be considered on an equal footing with white men. Even as late as 1954, a ‘normal’ African was considered the equivalent of a lobotomized
European (Dr. J. C. Carothers, The African Mind cited in Fanon 2004, pp 226-227)! Once again, the focus of anti discrimination discourse was on rejecting the attribution of disability to ethnic types rather than to question the use of disability to label certain people as inferior: “Racial and ethnic prejudice is exposed while prejudice against people with disabilities is passed over as insignificant and understandable” (Baynton 2001, p 50). Baynton points out that once homosexuality was no longer considered a psychological disability, there was less justification for discrimination against gays and lesbians.

Instead of challenging the social order and accepted ideas about disability, much energy is expended by groups subject to discrimination in dissociating themselves from the category of disabled, since being “associated with disabled people or with the accommodations accorded disabled people is stigmatizing” (ibid, p 51). In turn, this has dire consequences when it comes to disability rights:

This common strategy for attaining equal rights, which seeks to distance one’s own group from imputations of disability and therefore tacitly accepts the idea that disability is a legitimate reason for inequality, is perhaps one of the factors responsible for making discrimination against people with disabilities so persistent and the struggle for disability rights so difficult” (ibid, p 51).

Harlan Hahn (1985) noted that there is a distinct tendency not to broach disability in politics, academia or society at large, the issue being kept ‘out of sight and out of mind’:

There is obviously a great deal of misunderstanding about disability. In large measure, this phenomenon may be natural because disability is a subject which many people would prefer not to think about” (Hahn 1985, unpaged).

According to Davis (2002) before the word normal appeared in English around 150 years ago, the prevalent notion was of the ideal, which was impossible to achieve and therefore individuals were not required to strive towards it, and as such all bodies were accepted along with their imperfections as part of a descending continuum. The idea of norms appeared with the establishment of the statistical concept of the bell curve, where the majority of individuals try to crowd under the main umbrella that denotes normalcy.

With the social and political upheavals during the Enlightenment, society came to be seen as made up of a collection of individuals who were all essentially the same, all created equal, but paradoxically they were separate individuals; which in turn reveals the paradox of representative democracy – “for a government to be truly representative, there would have to be one elected official for each citizen” (Davis 2002, p 103). In answer to this problem, Davis claims, the average citizen was created through the establishment of the bell curve norm – each person has an individual place on the curve, but is simultaneously part of that continuum. At the same time, the average citizen can be defined: “Thus, the concept of the norm permits the idea of individual variation while enforcing a homogeneous standard or average” (ibid, p 103). This idea of the norm extends to the political sphere, where the bell curve is used to justify the collective voting of representative democracies, since the results reflect the norms of opinion – Davis refers to this system as normocracy.

Democracy needs the illusion of equality, and equality needs the fiction of the equal or average citizen. So with the creation of representative democracy comes the need for an ideology that will support and generate the aims of normalcy.” (ibid, p 104)

Not only this, but as Galton demonstrated with his quincunx (or bean machine), the bell curve also serves the job of ‘scientifically’ explaining the unequal distribution of wealth ‘naturally’ inherent in the capitalist system “Equality and normalcy demand, by the unbending laws of mathematics, that there will always be inequality” (ibid, 105).

Davis maintains that for the past two centuries this totalitarian ideology of ‘normal’ has controlled all aspects of people’s lives in ways far more despotic than the most unjust system of feudalist rule:

The patient or citizen governed by the norm of representation and by the hegemony of normalcy passes, in one lifetime, through a series of institutions-day-care; primary, secondary, and higher educational facilities; corporate employment; hospitals; marriage and family; managed care; and finally nursing homes-all of which are based around legally, juridically, medically, and culturally normalizing concepts” (ibid, p 105).

According to Davis, since nobody can conform to the strictures of normalcy, we all become victims and need to work hard to give the appearance of conforming, while disabled people become the Other that obviously does not belong, thus making it easier for non-disabled individuals to claim affiliation with the normal part of society. As Trinh T. Minh-ha wrote of the oppressive patriarchal ideology:

Maintaining the intuitive, emotional Other under the scientistic tutelage of the rational, all-knowing Western Subject is an everlasting aim of the dominant which keeps on renewing itself through a widest range of humanistic discourses” (Trinh 1991, p 20).

According to Butler (2009), the concept of humanness, its ‘differential norm’ is a “shifting prerogative” a value that can be ascribed or denied, while the notion of the “norm continues to produce the nearly impossible paradox of a human who is no human“:

Some humans take their humanness for granted, while others struggle to gain access to it. The term “human” is constantly doubled, exposing the ideality and coercive character of the norm: some humans qualify as human; some humans do not” (Butler 2009, p 76).

Butler suggests that our capacity for compassion or identification with Others depends on how this differential norm is framed, both visually and discursively:

There are ways of framing that will bring the human into view in its frailty and precariousness, that will allow us to stand for the value and dignity of human life” (ibid, p 77).

Although Butler was referring to people in conflict situations when she wrote this, the ‘framing out’ of disability could be regarded in much the same light.

Thomas Reynolds (2012) rallies against what he terms a ‘cult of normalcy’ where society becomes inculcated with standards of bodily appearance and function through “rituals of socialization” in the media, education system, our codes of social behaviour and so on: ” ‘cult’ is a helpful way to understand how normalcy is communicated and internalized by members in a society” (Reynolds 2012, p 28). As society becomes accustomed to viewing the body through this lens of normalcy, the appearance of disability comes as a shock, “a disruption, a disorienting surprise that throws into crisis what has been taken for granted” and the response is to blame the individual body and attach stigma to it, since by “designating certain kinds of bodies as deviant, normalcy serves to uphold communal identities, supporting the basic way a group of people understand what is valuable among them” (ibid, p28-29); defining the ‘normal’ self by creating an ‘abnormal’ Other in binary opposition and excluding it. Reynolds suggests that discourses of inclusion and accommodation perpetuate this dualism, since the notion of ‘inclusion’ implies an imbalance of power, a patronising ‘us-them‘ relationship with underlying pity and the need to normalize the Other. He proposes a more egalitarian system of accessibility to unite members of society, based on “non-domination and mutuality” where disabled bodies are accepted not in spite of but because of their differences, where the community adjusts to difference rather than demanding the normalizing of individuals. He suggests that we begin by accepting the vulnerability (Butler’s precariousness) that we all share as human beings:

Reciprocity between persons involves more than exchanges based on bodily function (ability) and appearance (aesthetics). All human beings share a capacity for giving and receiving, which is grounded in their vulnerability” (ibid, p 30).

This involves casting aside the dominant ideology of ‘normal’ and its inherent desirable traits (youth, physical strength, a healthy and attractive appearance, rational thinking, etc) while accepting undesirable aspects (weakness, ageing, disease, death) as part of the human life course. We become complete human beings through acknowledging our vulnerability over our ability – our need to receive as well as to give; Reynolds quotes Jean Vanier from Becoming Human:

We do not discover who we are, we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.” (Becoming Human, p 40)

The problem is that we fear our vulnerability, and Reynolds holds that this is the root of scapegoating and stigmatizing of disabled persons, but that in denying disability we are essentially denying our own condition, our essential needs as humans.

Against the cult of normalcy, disability foregrounds vulnerability as a fundamental condition of sharing life with one another. There is need for healing, not because disability requires “cure” or “containment,” but because it entails real suffering, sometimes bodily but in many cases communal and social in the form of alienation, exclusion, and normalizing pressures. Disability, then, invites us to recognize mutual human vulnerability and dependence upon each other” (Reynolds 2012, p 32)

In her work on Bodies that Matter, Judith Butler posed the following question, very pertinent to disability discourse:

How does that materialization of the norm in bodily formation produce a domain of abjected bodies, a field of deformation, which, in failing to qualify as the fully human, fortifies those regulatory norms? What challenge does that excluded and abjected realm produce to a symbolic hegemony that might force a radical rearticulation of what qualifies as bodies that matter, ways of living that count as “life,” lives worth protecting, lives worth saving, lives worth grieving?” (Butler 1993, p 16)

The disabled body is the ‘abjected body’ that delineates and reinforces understanding of the normal by defining what it is not, but is the disabled body able to challenge the ‘symbolic hegemony’ of the normal and force a global reassessment, basically, of what lives are worth living?

The problem of reductionist, binary understandings was quite eloquently discussed by Hal Foster in his discussion of the significance of the abject body in contemporary culture:

for many in contemporary culture truth resides in the traumatic or abject subject, in the diseased or damaged body. To be sure, this body is the evidentiary basis of important witnessings to truth, of necessary testimonials against power. But there are dangers with this siting of truth, such as the restriction of our political imaginary to two camps, the abjectors and the abjected, and the assumption that in order not to be counted among sexists and racists one must become the phobic object of such subjects” (Foster 1996, p 166).

In this sense, if you’re not part of the solution, you’re part of the problem! This may also partially explain why the vast majority of disability activists and scholars are disabled themselves. Lennard Davis (1995a) mentions how being perceived as non-disabled affects discourse within the disabled community, as well as how disability is generally rejected as a topic for discussion, or virtually blacklisted.

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