“When the dominant culture defines some groups as different, as the Other, the members of these groups are imprisoned in their bodies. Dominant discourse defines them in terms of bodily characteristics and constructs those bodies as ugly, dirty, defiled, impure, contaminated or sick” (Iris Young, quoted in Sibley 1995, p 18)
“It is always possible to bind together a considerable number of people in love, so long as there are other people left over to receive the manifestations of their aggressiveness.” (Freud 1962, p 61)
In his extended study of the origins and effects of stigma, Erving Goffman observes that the term was originally coined by the ancient Greeks, who cut or branded a particular symbol on an individual’s body to mark them out as having an unusually low moral character. In its modern sense, the word denotes an attribute that brings about a perceived “discrepancy between virtual and actual social identity“, and since attributes are not discrediting per se, they are not necessarily accorded the status of stigma in all individuals who possess them (pp 12-13). Stigma is thus defined as “an undesired differentness from what we had anticipated” something that makes us recoil from an individual, regardless of other attributes they may possess, since “by definition… we believe the person with a stigma is not quite human” (p 15).
The stigmatised can thus be understood as that which Julia Kristeva (1982) terms the abject: “the jettisoned object“, “radically excluded” and possessing only the quality of “being opposed to I” whilst representing an external source of perpetual danger to both identity and society. A desire to exclude filth from contemporary society is linked to stereotypes of imperfection located in inferior diseased and disabled bodies, which pose the “threat of contagion” and as such “the ‘diseased other’ has an important role in defining normality and stability” (Sibley 1995, p 24). Early scientific work such as that of Lombroso attempted to identify physical attributes of immoral and criminal types, and thus reinforced stereotypes of the link between disabled people, both physically and mentally impaired, and the dangers they posed to the civilised world; in the words of Haraway, “bodies are maps of power and identity” (1995, p 180).
A central feature of the stigmatised individual is their acceptance of the stigma, which Goffman declares takes 3 forms: attempts to correct it, to master new tasks in spite of it, or to use it to avoid social responsibility (pp 19-21). Stigmatised people may choose to avoid entering society, since they feel under constant scrutiny of the public gaze, not knowing what others are really thinking; while at times their actions may be lauded in light of their stigma, at others their behaviour perceived as symptomatic of their stigma (24-27).
The degree of stigma awarded a particular impairment, in Goffman’s view, depends not only upon its visibility (or, more accurately its perceptibility or ‘evidentness’) but also on its obtrusiveness (how much the impairment interferes with the activity at hand) and perceived focus (preconceived ideas regarding how a stigma disqualifies a person from other spheres of life activity) (p 64-67). The greater the departure from what is normal or expected, the greater the stigma or sense of shame. Hierarchies of disability have been observed, even among disabled people. Shakespeare et al (1996) quote disabled teenagers who admitted to patronizing peers with more serious impairments, as well as hierarchies of desirability among the boys at a special boarding school: “The most desirable boys were the haemophiliacs because they were closest to being non-disabled, almost god-like. The least desirable were those with muscular dystrophy, and I felt I was somewhere in the middle” (p 22).
Tringo (1970, cited in Tyner, 2016, p 161) developed his “Disability Social Distance Scale” to analyse prejudice towards different groups of disabled people. He analysed 21 disabilities, ranging from arthritis and asthma to blindness and CP, even including such groups as elderly, ex-convict and alcoholic. Non-disabled subjects were asked to rank the disabilities on a scale from “would marry” to “would put to death”. His findings revealed that common physical ‘disabilities’ like asthma and ulcers were deemed more “acceptable”, while sensory impairments such as blindness or deafness were less acceptable but more acceptable than brain related disabilities. According to Tringo’s findings, the disabilities with the most stigma attached were those of a “psychogenic” nature (mental illness and alcoholism).
The fact that Tringo’s hierarchies of acceptance retain a somewhat rigid ranking over 20 years later is cited as evidence that attitudes towards disabled people remain largely unchanged, while confirming disability’s “socially contingent nature” (Dear et al, 1997). Such studies reveal as much about the society of respondents as they do about the groups in the hierarchies. It was revealed that women are more tolerant then men, and younger people more than old, while city dwellers are more accepting than their village counterparts; it was also shown that acceptance declines as the encounter increases in proximity and intimacy (Tringo, p 470).
Another aspect that tends to be overlooked in academic analyses of stigma and its effects is the influence of class on behavior. William Hay, politician and author, expressed this in his Deformity: an essay (1754) where he pointed out that being a gentleman, the society he kept prevented others from remarking on his impairment (he was less than 5 feet tall and hunchbacked), or when they did it was merely “innocent pleasantry of a friend” whereas when he was seen by others of lower classes he could “scarce pass without hearing some affront“. He credits education with setting a “barrier between the mob and the civilized part of mankind” and notes that “insolence grows in proportion as the man sinks in condition” (p 9).
Stereotypes in society tend to exaggerate the effects of disabilities, and present impaired people as “visually repulsive; helpless; pathetic; dependent; too independent; plucky, brave and courageous; bitter, with chips on our shoulders; evil (the `twisted mind in a twisted body’); mentally retarded; endowed with mystical powers” (Sutherland 1991, Ch6). Sutherland notes that such stereotyping can lead to patronizing treatment and often becomes self-fulfilling, in the sense that people regarded as helpless or of low intellect and treated thus will probably end up conditioned into being so. There are misconceptions and blanket notions of disability that do not take an individual’s particular impairment or its degree into account, issues that could be avoided by simply consulting with the individual and finding out what they need (if anything). Sutherland quotes the following example:
“a woman had just climbed, on crutches, one of the longest staircases in the New York subway system and was standing at the top, getting her breath back, when some well meaning cavalier materialised out of the crowd, grabbed her up and carried her down to the bottom again. Had he bothered to ask if she needed assistance no problem would have arisen.”
Sutherland states that the worst thing about stereotypes of disability is that they depersonalise – the individual is seen only as embodiment of the impairment, they are not seen as anyone beyond their disability, which becomes their sole defining characteristic: “by summing up a person’s whole character in terms of their disability it robs them of their individuality“. A particularly debasing stereotype is the one about bravery, where simple everyday activities are viewed as superhuman achievements considering the odds, and this merely serves to dehumanize the individual concerned. As such, I really don’t want to present my subjects as people out of the ordinary, these are simply people’s lives – the fact that they have impairments is what connects them but does not set them apart.
Jenny Morris speaks of becoming angry when people would patronizingly tell her how wonderful they thought she was for struggling against the challenges of being a disabled person, and that this obviously alluded to the prejudiced opinion that being disabled must be unbearable, not worth living:
“I realised that at the heart of such remarks lay the judgement that being disabled must be awful, indeed intolerable. It is very undermining to recognise that people look at me and see an existence, an experience, which they would do everything to avoid for themselves” (1991, p 15)
Apart from the stares and comments, prejudice is encountered in almost all interactions with non-disabled people – the feeling of being unwanted or less-than-human. Morris speaks of how non-disabled people think that they have the right to invade the privacy and make judgements about disabled people:
“We often experience the fascination that non-disabled people have with ‘just how do you manage?’ They have a consuming curiosity about how we pee, how we shit, how we have sex (do we have sex?) Many of us have experienced the total stranger or slight acquaintance coming up and asking us the most intimate things about our lives. Our physical difference makes our bodies public property” (ibid, p 24)
One of the most demeaning gestures is the offering or giving of help when it is not needed, which Morris puts down to people just wanting to feel better about themselves or a demand for gratitude. Sine I had been attending the rehabilitation centre prior to beginning this project, I have got used to waiting to be asked and not offering help unless it is quite obviously needed or no more than I would do for any other person (handing them a phone from the other side of the room, for example).
Goffman observes that feelings of shame, self-hate and self-derogation can lead to a number of different strategies being employed – trying to ‘pass’ as normal (through cosmetic surgery or mastery of other activities deemed beyond their capacity, or eschewing the ‘stigma symbols’ of physical equipment used to counter or lessen the impairment), using stigma for “secondary gains”, or “protection from social responsibility” or simply avoiding social contact. The stigmatized never really know what others are really thinking about them, and often (perhaps unwarrantedly) feel they are being perceived in terms of their stigma alone. This can lead to a vacillation between “defensive cowering” and “hostile bravado”, as well as concurrent depression such extreme mood swings can induce – this is something that I have experienced with all my subjects: after a few weeks they fall into depression. I appreciate that it must be very hard to be continuously putting a brave face on things, and as such I have spent a lot of time doing remedial work and offering moral support.
Garland-Thomson explains that we attempt to remove disability from our lives in an effort to wipe out bodily vulnerability and mortality:
“Modernity pressures us relentlessly toward standardizing bodies, a goal that is now largely accomplishable in the developed world through technological and medical interventions that materially rationalize our bodies under the banner of progress and improvement. We are told that if we buy the right products, cultivate the right habits, pay careful attention, and use the most sophisticated medical technology, we can banish disability from our lives” (2005, p 524).
On the other hand, there are strong disincentives to being associated with or labeled as disabled persons. While we purportedly value biodiversity in the natural world, it is apparently something to be avoided in humanity as we strive for aesthetic bodily standards and ideals of health though medicinal, technological, surgical and genetic intervention. We buy into the belief that medicine and science can help us to avoid the inevitable “As a consequence, when disability enters our lives, often our only available responses are silence, denial, shame, or determined and desperate vows to “fight it.” Seldom do we imagine disability as an aspect of all lives that our society, government, and community should accommodate and include” responses which go some way to explain the stigma attached to disability in contemporary society, but as G-T makes clear, this is merely a smokescreen tactic since our bodies are after all mortal. Nevertheless, it seems to be a stereotype that is not easily uprooted, and sustained by common media images: “The ideology of cure and the mandate for normalcy intertwine, crowding out any possible narrative of accommodating rather than eliminating disability.” This is nothing new, the eugenic ideology that disability must be stamped out at all costs to promote the betterment of humanity.
The disabled body is generally seen as one that does not conform, a malfunctioning or unruly body that defies control and societal rules of propriety:
“a body gone wrong and in need of remediation through cure, healing, or rehabilitative adjustment to participate fully in society.
When it cannot be brought into “belonging” through normalizing efforts to contain unpredictable and disruptive displays, such a body is excluded (in “care facilities” that function as holding places restricting public access) or eliminated (through prenatal screening to offer “preventive” intervention for parents of unwanted children)” (Reynolds 2012, p 25).
Reynolds goes on to note that society is judged according to the way disability is treated, and that disability serves as a mirror held up to both societies and individuals “reflecting back values, attitudes, and practices that nurture treatments of disability as a tragic flaw, the product of circumstances and bodies “gone wrong“” (ibid, p 27). Our attitudes towards disability and disabled persons reveal much about who we are collectively and as individuals.
Unfortunately, as Goffman understood, militant opposition to stigma creates a conundrum, since the activist may well end up politicizing his own life. Although this may be beneficial to the next generation of stigmatized, it only succeeds in thwarting the original goal of attaining a normal life. Moreover, highlighting the situation is to some degree confirming public opinion of the source of stigma as a reality, while admitting that the stigmatized do form a de facto group.
“On the other hand, if he seeks some kind of separateness, not assimilation, he may find that he is necessarily presenting his militant efforts in the language and style of his enemies …. His disdain for a society that rejects him can be understood only in terms of that society’s conception of pride, dignity, and independence… the more he separates himself structurally from the normals, the more like them he may become culturally” (Goffman 1963, p 114).
In attempting to distinguish the stigmatized from the oppressors, the activist is in fact reduced to following the very same logic that brought about the oppression in the first place. Trinh T. Minh-ha also notes that in displacing the dominant ideology, the danger of “reproducing totalitarianism is always present and one would have to confront, in whatever capacity one has, the controversial values likely to be taken on faith as universal truths by one’s own culture(s)” and as such recommends careful consideration and constant renewal of critical values when “fabricating the tools of resistance” (Trinh 1991, p 19).