The Language of Disability

The Insurance industry is failing the consumer. The concept of fraud is being used by the insurance industry to deceive the public. "Our current national health care system is simple: don't get sick."

The Language Of Disability: Problems Of Politics And Practice
CREATOR:	Irving Kenneth Zola (author)
DATE:	1988
FROM:	Australian Disability Review
SOURCE:	Available at selected libraries

http://www.disabilitymuseum.org/lib/docs/813.htm?page=print

‘When I use the word, it means just what I choose it to mean -- neither more nor less.’
-- Humpty Dumpty

The Power of Naming

"Language. . .has as much to do with the philosophical and political conditioning of a society as geography or climate. . .people do not realise the extent to which their attitudes have been conditioned since early childhood by the power of words to ennoble or condemn, augment or detract, glorify or demean. Negative language inflicts the subconscious of most people from the time they first learn to speak. Prejudice is not merely imparted or superimposed. It is metabolised in the bloodstream of society. What is needed is not so much a change in language as an awareness of the power of words to condition attitudes." (Saturday Review 1967)

A step in this awareness in the recognition of how deep is the power of naming in Western culture.

According to the Old Testament, God’s first act after saying, ‘Let there be light’ was to call the light ‘Day’ and the darkness ‘Night’. Moreover, God’s first act after the creation of Adam was to bring in every beast of the field so that Adam could give them names; and ‘whatsoever Adam called every living creature, that was the name thereof’ (Genesis 2:20). Thus what one is called tends ‘to stick’ and any unnaming process is not without its difficulties and consequences (Le Guin 1985).

While a name has always connoted some aspect of one’s [sic] status (e.g. job, location, gender, social class, ethnicity, kinship), the mid-twentieth century seems to be a time when the issue of naming has assumed a certain primacy (Friedrich 1986; Vickery 1986). In the post-World War II era Erikson (1950) and Wheelis (1958) noted that ‘Who am I’ or the issue of identity had become a major psychological concern of the US population. The writings of C. Wright Mills (1959) as well as the Women’s Movement (Boston Women’s Health Book Collective 1970), however, called attention to the danger of individualising any issue as only a ‘personal problem’. The power of naming was thus recognised not only as a personal issue but a political one as well. While social scientists focused more on the general ‘labelling’ process (Becker 1963, 1964; K. Erikson 1962, 1966; Schur 1965) and the measurement of attitudes toward people with various chronic diseases and disabilities (Siller 1986; Yuker 1966), a number of ‘liberation’ or ‘rights’ movements focused on the practical implications. They claimed that language was one of the mechanisms by which dominant groups kept others ‘in place’ (Gumperz 1982; Longmore 1985). Thus, as minority groups sought to gain more control over their lives, the issue of naming -- what they are called -- was one of the first battlegrounds. The resolution of this was not always clear-cut. For some, the original stigmata became the banner: Negroes and coloureds become blacks. For others, only a completely new designation would suffice; ‘Ms’ has caught on as a form of address but ‘womyn’, ‘wimmin’ have not been so successful as a way of severing the vocabulary connection to ‘men’. People with disabilities are in the midst of a similar struggle.

The struggle is confounded by some special circumstances which mitigate against the easy development of either a disability pride or culture (Johnson 1987; Zola 1988). For unlike most minority groups who grow up in a recognised subculture and thus develop certain norms and expectations, people with chronic diseases and disabilities are not similarly prepared. The nature of their experience has been towards isolation. The vast majority of people who are born with or acquire such conditions do so with families who themselves do not have these conditions nor associate with others who do. We are socialised into the world of ‘normal’ with all its values, prejudices, and vocabulary. As one generally attempts to rise out of one status, there is always an attempt to put this status in some perspective. The statements that one is more than just a black or a woman, etc. are commonplace. On the other hand, where chronic illness and disability are concerned, this negation is almost total and is tantamount to denial. Proof of successful integration is embodied in such statements as ‘I never think of myself as handicapped’ or the supreme compliment, ‘I never think of you as handicapped’.

What then of the institutions where we spend our time: the long-term hospitals, sanitoria, convalescent and nursing homes? These are aptly labelled ‘total institutions’, (Goffman 1961) but ‘total’ refers to their control over our lives, not to the potential fullness they offer us. The subcultures formed within such places are largely defensive and designed to make life viable within the institution. Often this viability is achieved at such a cost that it cannot be transferred to the external world.

For most of their history, organisations of people with disabilities were not much more successful in their efforts to produce a viable subculture. Their memberships have been small in comparison to the potential population, and they have been regarded more as social groups rather than serious places to gain technical knowledge or emotional support. And though there are some self-help groups which are becoming increasingly more visible, militant, and independent of medical influence, the movement is still in its infancy (Crewe and Zola 1982).

Long ago, Talcott Parsons articulated the basic dilemma facing such groups:

"The sick role is. . .a mechanism. . .channels deviance so that the two most dangerous potentialities, namely group formation and successful establishment of the claim of legitimacy, are avoided. The sick are tied up, not with each other deviants to form a ‘subculture’ of the sick but each with a group of nonsick, his personal circle, and, above all, physicians. The sick thus become a statistical status and are deprived of the possibility of forming a solidary collectivity. Furthermore, to be sick is by definition to be in an undesirable state, so that it simply does not ‘make sense’ to assert a claim that the way to deal with the frustrating aspects of the social system is for everyone to get sick." (Parsons 1951, p. 477)

A mundane but dramatic way of characterising this phenomenon can be seen by looking at the rallying cries of current liberation movements. As the ‘melting pot’ theory of America was finally buried, people could once again say, even though they were three generations removed from immigrants, that they were proud to be Greek, Italian, Hungarian, or Polish. With the rise of black power, a derogatory label became a rallying cry: ‘Black is beautiful!’. And when female liberation saw their strength in numbers, they shouted: ‘Sisterhood is powerful!’ But what about those with a chronic illness or disability. Could we yell: Long live cancer!’ ‘Up with multiple sclerosis!’ ‘I’m glad I had polio?’ ‘Don’t you wish you were blind?’. Thus the traditional reversing of the stigmata will not so easily provide a basis for a common positive identity.

Some Negative Functions of Labelling

Their struggle over labels often follows a pattern. It is far easier to agree in terms that should not be used than the designations that should replace them (Peters 1986abc). As with the racial, ethnic (More 1976), and gender groups (Shear 1984, 1985) before them, many had begun to note the negative qualities of certain ‘disability references’ (Biklen and Bogdan 1977; Corcoran 1977); and others created quite useful glossaries (Shear 1986; and see separate listing of ‘brochures’ at end of references).

Since, as Phillips (1986) notes, the names one calls oneself reflect differing political strategies, we must go beyond a list of ‘dos’ and ‘don’ts’ to an analysis of the functions of such labelling (Chaffee 1987; Gill 1987; Gillett 1987, Lindsey). As long ago as 1651, Thomas Hobbes, in setting his own social agenda, saw the importance of such clarification, ‘seeing then that truth consists in the right ordering of names in our affirmations, a man that seeks precise truth has need to remember what every name he uses stands for; and to place it accordingly; or else he will find himself entangled in words as a bird in lime twigs; the more he struggles the more belimed’ (Hobbes 1950, p. 26). There are at least two separate implications of such naming which have practical and political consequences.

The first is connotational and associational. As Kenneth Burke (1950, p. 4) once stated, ‘Call a man a villain and you have the choice of either attacking or avenging. Call him mistaken and you invite yourself to attempt to set him right’. I would add, ‘Call a person sick or crazy and all their behaviour becomes dismissable’. Because someone has been labelled ill, all their activity and beliefs -- past, present, and future -- become related to and explainable in terms of their illness (Goffman 1961). Once this occurs, society can then deny the validity of anything which they might say, do, or stand for. Being seen as the object of medical treatment evokes the image of many ascribed traits such as weakness, helplessness, dependency, regressiveness, abnormality of appearance, and depreciation of every mode of physical and mental functioning (Longmore 1985; Goodwin 1986; Zola 1982). In the case of a person with a chronic illness or a permanent disability, these traits, once perceived to be a temporary accompaniment of an illness, become indelible characteristics. The individual is trapped in a state of suspended animation socially, is perpetually a patient, is chronically viewed as helpless and dependent, in need of care but ‘incurable’ (Longmore 1985, p. 420).

A second function of labelling is its potential for spread, pervasiveness, generalisation. An example of such inappropriate generalising was seen in a study by Conant and Budoff (1982). They found that a group of sighted children and adults interpreted the labels 'blind' and 'legally blind' as meaning that the person was totally without vision: something which is true for only a small segment of people with that designation. What was, in reality, problematic became a given. A second example of this process is when the disability and person are equated. While it is commonplace to hear of doctors referring to people as the ‘appendicitis in Room 306’ or ‘the amputee down the hall’, such labelling is more common in popular culture than one might believe. My own analysis of the crime-mystery genre (Zola 1987), noted that after an introductory description of characters with a disability, they are quite often referred to by their disability, eg. ‘the dwarf’, ‘the blind man’, ‘the one-armed’, ‘the one-legged’.

Mostly this is done by some third person observer or where the person with the disability is the speaker, the disability is emphasised, eg. ‘said the blind man’. No other physical or social descriptor appears with such frequency.

Perhaps not unexpectedly such stand-in appellations are most commonly applied to villains. They were quite commonplace during the heyday of the pulp magazines where the disability was incorporated into their names: ‘One Eyed Joe’, ‘Scarface Kelly’. (This is a tradition enshrined in the Dick Tracy comic strips.) It is also a tradition that continues, though with more subtlety. Today we may no longer have ‘Clubfoot the Avenger’, a mad German master criminal who crossed swords for twenty-five years with the British Secret Service (Williams 1918, 1923, 1924, 1928, 1932, 1936, 1944), but we do have ‘The Deaf Man’, the oft recurring thorn in the side of Ed McBain’s long running (over thirty years) 87th Precinct series (1968, 1973, 1985). All such instances cannot help but reinforce an association between disability, badness, and abnormality (Conrad and Schneider 1980).

A very old joke illustrates the further pervasiveness of such labelling:

"A man is changing a flat tire outside a mental hospital when the bolts from his wheel roll down a nearby sewer. Distraught, he is confronted by a patient watching him who suggests, ‘Why don’t you take one bolt off each of the other wheels, and place it on the spare?’ Surprised when it works, the driver says, ‘How come you of all people would think of that?’ Replies the patient, ‘I may be crazy, but I’m not stupid.’"

This anecdote demonstrates the flaw in thinking that a person who is mad is therefore stupid or incapable of being insightful about everything. As the social psychological literature has long noted, this is how stigma comes about: from a process of generalising from a single experience, people are treated categorically rather than individually and in the process, devalued (Ainlay, Becker, Coleman 1986; Jones et al. 1984; Katz 1981). As Longmore so eloquently concludes, a ‘spoiling process’ (Goffman 1963) results whereby ‘they obscure all other characteristics behind that one and swallow up the social identity of the individual within the restrictive category’(Longmore 1985, p. 419). Peters puts it most concretely: ‘The label that’s used to describe us is often far more important in shaping our view of ourselves -- and the way others view us -- than whether we sign, use a cane, sit in a wheelchair, or use a communication board’ (1986a, p. 25).

While many have offered vocabulary suggestions to combat the abovenamed connotations and pervasiveness, few have analytically delineated what is at stake in such name changes (Kriegel 1969, 1981; Longmore 1985). The most provocative and historically rooted analysis is an unpublished paper by Phillips (1986). There she delineates four distinct strategies which underly the renaming. While she carefully notes that further investigation may change or expand her categorisation, the very idea of her schema and the historical data describing the genesis of each ‘recoding’ remain timely.

‘Cripple’ and ‘handicapped’, either as nouns or adjectives, she sees as primarily ‘names of acquiescence and accommodation’, reflecting an acceptance of society’s oppressive institutions. Terms such as ‘physically challenged’ reflect a ‘try harder ideology’. By making ‘the challenge’ such a personal one, they also run the risk of fostering a ‘blaming the victim’ stance (Ryan 1970). Such a term, as well as ones like the Association for Community Living’, ‘physically different’, ‘physically inconvenienced’, may not only be so euphemistic as to confound anyone as to who is being referred as well as contribute too strongly to the denial of existing realities (Chaffee 1987). The two remaining strategies represent a more activistic philosophy. ‘Handicapper’ and ‘differently-abled’ are ‘names of reaction and reflection’ where the purpose of the creators is in emphasising ‘the can-do’ aspects of having a disability.

The former interestingly enough draws sustenance from dictionary usage (something which I will do in subsequent pages of this paper) whereas ‘handicapper’ is defined as someone who determines or assigns handicaps usually in athletic contexts.

To the group of Michigan advocates who coined the term (Gentile and Taylor 1976), a ‘handicapper’ is an individual who determines the degree to and manner in which one’s own definable physical or mental characteristics might direct one’s life activities. Most angry of all, says Phillips, are ‘names of renegotiation and inversion’ where it is the context that sets the meaning. Perhaps the best known examples are when political activities in the privacy of their own circles talk dirty, referring to themselves as ‘blinks’, ‘gimps’, or telling ‘crip’ jokes and expounding on the intricacies of ‘crip’ time. Far more controversial, however, is when in public people proclaim such terms as a matter of pride. Thus, recently many have written about the positive aspects of ‘being deaf’ (Disability Rag 1986; Innerst 1986) or even more dramatically in being a ‘cripple’ (Milan 1984). Kriegel (1969, 1981) says that ‘cripple’ describes ‘an essential reality’, a way of keeping what needs to be dealt with socially and politically in full view. Nancy Mairs, a prize-winning poet who has multiple sclerosis, clearly agrees; and in the opening remarks of her essay, ‘On Being a Cripple’, states it most vividly:

"The other day I was thinking of writing an essay on being a cripple. I was thinking hard in one of the stalls of the women’s room in my office building, as I was shoving my shirt into my jeans and tugging up my zipper. Preoccupied, I flushed, picked up my book bag, took my cane down from the hook, and unlatched the door. So many movements unbalanced me, and as I pulled the door open, I fell over backward, landing fully clothed on the toilet seat with my legs splayed in front of me: the old beetle-on-its-back routine. Saturday afternoon, the building deserted, I was to free to laugh aloud as I wriggled back to my feet, my voice bouncing off the yellowish tiles from all directions. Had anyone been there with me, I’d have been still and faint and hot with chagrin.

"I decided that it was high time to write the essay. First, the matter of semantics. I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are handicapped and disabled. I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognise that they are complex and not entirely flattering. People -- crippled or not -- wince at the word cripple, as they do not at handicapped or disabled. Perhaps I want them to wince. I want them to see me as a touch [sic] customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger." (1986, p. 9).

While Phillips’ very titles may imply an evaluation of the particular strategies, it is clear from her own caveats that while many may try to impose their terminology as ‘the correct language’, ‘None feel really right’ (Peters 1986a, p. 5).

Recontextualising Names

The ultimate question, of course, is whether any of these renaming procedures, singly and alone, can deal with the connotational and generalisation issues discussed previously. I would argue that the context of usage may be every bit as important (as Phillips 1986 implies) as the specific terminology. Thus one of the reasons for all the negative associations to many terms is a result of such contexts. Here social scientists, researchers, and clinicians are particularly at fault in their medicalising of disability (Zola 1972; Illich 1977; Conrad and Schneider 1980). In conversation, but more importantly, in their writings and thus in the transmission of these writings by the popular press and media, people with varying diseases and disabilities are inevitably referred to as ‘patients’, a term which describes a role, a relationship, and a location (i.e. in an institution or a hospital) from which many connotations, as previously noted, flow. For the thirty-six million people now designated as having a physical, mental, or biological disability, only a tiny proportion are continually resident in and under medical supervision and thus truly ‘a patient’. Similarly, the terms ‘suffering from’, ‘afflicted with’ are projections and evaluations of an outside world. No person with a disability is automatically ‘suffering’ or ‘afflicted’ except in certain time-bound situations where they do indeed ‘hurt’, are ‘in pain, or ‘feel victimised’.

I am not arguing, however, for the complete elimination of medical or physical terminology for as De Felice cautions, ‘The disabled movement has purchased political visibility at the price of physical invisibility. The crippled and lame had bodies, but the handicapped, or so the social workers say, are just a little late at the starting gate. I don’t like that; it’s banal. When we speak in metaphorical terms, we deny physical reality. The farther we get from our bodies, the more removed we are from the body politic. . .’ (De Felice 1986).

One meaning I derive from his caution is that we must seek a change in the connotations and pervasiveness of our names without denying the essential reality of our conditions. Thus biology may not determine our destiny; but as with women, our physical, mental, and biological differences are certainly part of that destiny (Fine and Asch 1985). A way of contextualising our relationship to our bodies and our disabilities may not be in changing terms but in changing grammars. Our continual use of nouns and adjectives can only perpetuate the equation of the individual equalling the disability. No matter what noun we use, it substitutes one categorical definition for another. An adjective, while a ‘modifier’ of a noun, still colours and thus connotes the essential quality of the noun it modifies. Such adjectives as ‘misshapen’, ‘deformed’, ‘defective’, ‘invalid’ -- far from connoting a specific quality of the individual -- tend to taint the whole person. The same is true with less charged terms. Thus ‘a disabled car’ is one which has totally broken down. Could ‘a disabled person’ be perceived as anything less? Prepositions, on the other hand, imply both ‘a relationship to’ and ‘a separation from’. At this historical juncture the awkwardness in phrasing that often results may be all to the good, for it makes the user and the hearer stop and think about what is meant, as in the terms ‘people of colour’ and ‘persons with a disability’.

Distance and relationship are also at the heart of some very common verb usages. The first is between the active and the passive tense. Note the two dictionary meanings:

active: asserting that the person or thing represented by the grammatical subjects performs the action represented by the verb (Webster 1973, p. 12).
passive: asserting that the grammatical subject to a verb is subjected to or affected by the action represented by that verb (Webster 1973, p. 838).

Thus in describing an individual’s relationship to an assistive device such as a wheelchair, the difference between ‘being confined to a wheelchair’ or ‘using’ one is a difference not only in terminology but in control. Medical language has long perpetuated this tense use by its own emphasis on what it continually does to its ‘patients’ rather than with them (Edelman 1977; Szasz and Hollender 1956).

The most heavy ‘connotations’ and ‘pervasiveness’ issues may well be seen in the differential use of the verbs ‘be’ and ‘have’. The French language is very conscious of this in its careful distinctions between when to use etre (be) and when to use avoir (have). English daily usage is blurry but another look at Webster’s does show the possibilities.

be: to equal in meaning
to have same connotations as
to have identity with
to constitute the same class as (Webster 1973, p. 96)
have: to hold in possession
to hold in one’s use
to consist of
to stand in relationship to
to be marked or characterised by
to experience
SYN - to keep, control, retain, or experience (Webster 1973, p. 526)

Like the issue of nouns vs prepositions, verbs can also code people in terms of categories (e.g. x is a redhead) instead of specific attributes (eg. x has red hair) and thus allow people to feel that the stigmatised persons are fundamentally different and establish greater psychological and social distance (Crocker and Lutsky 1986). Thus as between the active and passive tense, so it is between ‘I am. . . ‘ and ‘I have. . . ‘ Both specify a difference in distance and control in relation to whatever it is one ‘is’ or ‘has’. And since it is an alternative image of distance and control which the renaming is all about, grammar, which tends to be normative, concise, shared and long-lasting, may serve us better than sheer name change. Though I may personally have a generic preference (e.g. for ‘disability’ and ‘handicap’), I hope it is obvious that I am not arguing for any ‘politically correct’ usage but rather what the political advantages and disadvantages are of each (Lindsey).

For example, there may be stages in the coping with a particular condition or in the perceived efficacy of a particular ‘therapy’ (eg. the twelve steps in Alcoholics Anonymous) when ‘ownership’ and thus the use of ‘I am’ is deemed essential. Those old enough to remember President Kennedy’s words at the Berlin Wall, ‘ich bin ein Berliner’ (I am a Berliner) will recall the power of its message of kinship. Thus, too, when we politically strategise as a minority group (Hahn 1985) and seek a kinship across disease and disability groups (Harris and Associates 1986), the politically coming-out may require a personal ownership best conveyed in terms of ‘I am. . . ’.

On the other hand, there are times when the political goals involve groups where disease and disability is not a permanent or central issue. On my own university campus for a myriad of reasons, people with mobility impairments are virtually non-existent. Yet gradually we are retrofitting old buildings and guaranteeing accessibility in new ones. The alliance here is with women who are or may become pregnant, parents with small children, people with injuries or time-limited diseases or disabilities, and others who perceive themselves at risk, such as ageing staff or faculty. They rarely see themselves as disabled but often see themselves as having a temporary disability or sharing a part of ‘the disabled experience’(e.g. ‘Now I know what it’s like to try to climb all those stairs’). Thus where coalition politics is needed, the concept of ‘having’ versus ‘being’ may be an easier way of acknowledging multiple identities and kinship, as in our use of hyphenated personal and social lineages, e.g. Afro-American.

A Final Caveat

One of the sad findings in the Phillips’study (1986) is how divisive this struggle over names has become. People thus begin to chastise ‘non-true believers’ and emphasise to others ‘politically correct’ usage. In so doing, we may not only damage the unity so necessary to the cause but also fail to see the forest for the trees. The reason for our struggle in the first place is because we live in a society which devalues, discriminates against, disparages people with a disability (Hahn 1985; Scotch 1984). It is not our task to prove that we are worthy of the full resources and full integration of our society. The fault is not in us, not in our diseases and disabilities (Crawford 1977, 1979; Ryan 1970; Zola 1982) but in mythical denials, social arrangements, political priorities and prejudices (Gleidman and Roth 1980). Here, too, a renaming can be of service but it is not of us but of our oppressors (Fine and Asch 1985; Saxton 1981). As Hughes and Hughes (1952) notes, when we turn the tables and create epithets for our oppressors, this may be a sign of a beginning cohesiveness. Thus the growing popularity of terms like TABs and MAB’s (temporarily or momentarily able-bodied) to describe the general population, breakdown the separateness of an ‘us’ and ‘them’ and emphasise the continuity and inevitability of ‘the disability experience’. Thus, too, those who have created the terms ‘handicappism’(Bogdan and Biklen 1977) and ‘healthism’(Crawford 1980; Zola 1972, 1977) equate these with all the structural ‘-isms’ in a society which operates to continue segregation and discrimination. To return finally to the issue of naming, the words of Philip Dunne reflect well the choices and consequences of language:

"If we hope to survive in this terrifying age, we must choose our words as we choose our actions. We should think how what we say might sound to other ears as well as to our own. Above all, we should strive for clarity. . .

". . .if clarity [is] the essence of style, it is also the heart and soul of truth, and it is for want of truth that human freedom could perish.’" (1986, p. 14).

References

Ainlay, S. C., Becker, G. and Coleman, L. M. (eds) (1986), The Dilemma of Difference: A Multidisciplinary View of Stigma, Plenum, New York.

Becker, H. (1963), Outsiders, The Free Press, Glencoe, IL.

-- ed.) (1964), The Other Side - Perspectives on Deviance, The Free Press, Glencoe, IL.

Biklen, D. and Bogdan, R. (1977), ‘Disabled -- Yes; Handicapped -- No: The Language of Disability, p. 5, insert in ‘Media Portrayals of Disabled People: A Study in Stereotypes’, Interracial Books for Children Bulletin, Vol. 8, Nos 3, 6 and 7, pp. 4-9.

The Language Of Disability: Problems Of Politics And Practice