Hi
thanks to Lilith for drawing attention to Tanya's paper. On a personal note,
I always enjoy Tanya's contributions and I've found her paper useful with my
students. As list owner, however, I suppose I also have to remind everyone
that it is a breach of copyright to reproduce published work in the public
domain (except in the use of 'short extracts for the purposes of academic
criticism'). I think the best strategy is to draw attention to a useful
paper by providing the reference, and perhaps the abstract, but be please be
aware that written consent from the author/publisher is required for
extended passages.
I'm sure Tanya will be delighted but the journal publishers won't be!
Best wishes
Mark.
-----Original Message-----
From: The Disability-Research Discussion List
[mailto:[log in to unmask]]On Behalf Of LILITH Finkler
Sent: 03 December 2002 23:03
To: [log in to unmask]
Subject: article re: person first language
Please see below an article written by Tanya Titchkosky re: person first
language in the Canadian context. This article helped me to clarify for
myself why it is so important to use "disabled" rather than " person with a
disability". I used to use the latter term consistently. I have copied the
entire article into this e-mail for convenience. I am also aware that not
everyone on this listserv can access academic journals easily. Hope this is
helpful in the current discussion. Lilith
=======================================================================
The Canadian Review of Sociology and Anthropology, May 2001 v38 i2 p125
Disability: A Rose by Any Other Name? "People-First" Language in Canadian
Society [*]. (people with disabilities, terminology analysis) TANYA
TITCHKOSKY.
Full Text: COPYRIGHT 2001 Canadian Sociology and Anthropology Association
Dans cet article, nous examinons la notion d'incapacite telle qu'elle est
creee et vehiculee par le langage qui privilegie la [much less than]
personne avant tout [much greater than]. Nous nous penchons en premier lieu
sur la formulation tres repandue, qui consiste a designer les personnes
handicapees comme des [much less than] personnes comme les autres [much
greater than]. En second lieu, nous etudions I'ideologie actuelle, qui met
l'accent sur le fait que les personnes handicapees sont simplement des [much
less than]personnes aver des handicaps [much greater than], dans l'une de
ses manifestations les plus concretes, c'est-a-dire un document recent du
gouvernement intitule A l'unisson: Une approche canadienne concernant les
personnes handicapees. En partant du concept de Dorothy Smith, selon lequel
le langage constitute l'organisation sociale, nous demontrons la facon dont
l'incapacite est medicalisee et individualisee dans ce document, et, par la,
maniere dont l'incapacite prend la forme d'une limitation anormale et d'une
insuffisance fonctionnelle que certaines personnes, quatre millions de
Canadiens en l'occurrence [much less than]eprouveraient [much greater than].
Enfin, nous concluons que le langage qui privilegie la personne avant tout
se comprend dans le cadre d'un processus continu ou l'incapacite n'est plus
percue comme un phenomene social et, par consequent, complexe sur le plan
politique.
This paper examines the representation of disability that is generated by,
and supports, "people-first language." The paper first describes the
ubiquitous formulation of disabled people as "just people." Second, the
current ideology that stresses that disabled people are simply "people with
disabilities" is examined in one of its concrete manifestations: a recent
government document entitled In Unison: A Canadian Approach to Disability
Issues. By making use of Dorothy Smith's concept that language is social
organization, the author shows how disability is organized in this document
as a medicalized and individual matter and, as such, takes shape as abnormal
limitation and lack of function that some people--four million
Canadians--"just happen to have." Finally, the paper concludes that
people-first language is best understood as part of an ongoing process that
removes the possibility of understanding disability as a social, and thereby
complex, political phenomenon.
How we are seen determines in part how we are treated; how we treat others
is based on how we see them; such seeing comes from representation.
--Dyer, 1993:1
THERE IS A PERVASIVE REPRESENTATION of disability found in organizationally
produced pamphlets and guidelines regarding how to "name" disability in
Canada; there is currently an unified attempt, coming from seemingly
everywhere, to make sure that anyone who has anything authoritative to say
about disabled people publically does so in the language of "people with a
disability," or what is sometimes called personfirst or people-first
language. "People with disabilities" is the dominant linguistic formulation
of disability in Canada, and deserves sociological consideration.
The phrase "people with disabilities" has been in circulation since at least
the 1970s, but until the 1990s such phraseology was one of a number of ways
to make reference to disabled people (see, for example, Canada, 1981). Since
sometime after the 1983 International Year of the Disabled, these various
expressions of disability have been supplanted almost entirely by
"people-first" phraseology (see, for example, Canada, 1996; 1998; Human
Resources Development Canada, 1995). This is a representation of disability
approaching hegemonic proportions, and there are sometimes formal sanctions,
and many informal ones, for not using it.
The recommendation to use people-first language, as well as the training of
people in its use, often takes the form outlined in Figure 1.
This particular lexicon was produced by the Ontario Ministry of
Citizenship's Office for Disability Issues, and is circulated widely, but
every province (as well as the Federal Government) has made and circulated
similar lexicons. The introductory page of the Ontario lexicon refers
especially to media professionals, whom the government reminds: "you have
the power to influence and reinforce the public's perception of people with
disabilities... This lexicon... will help you choose language that is
neither demeaning nor hurtful" (Ontario, 1992: 1). Similar versions of this
chart appear in various industry and organizational publications, and even
in university textbooks. Wherever and however this lexicon appears, it
always recommends that disability should be spoken of as something that
comes along "with" people. People-first phraseology conceives of disability
as a troublesome condition arbitrarily attached to some people, a condition
(unlike gender, race or ethnicity) that is only significant as a remedial or
managerial issue.
The ubiquitous character of this linguistic formulation of disability is
astounding. [1] Clearly, the intention of people-first language is to
replace the inherent objectification found within the term "the disabled"
and to escape what Dyer refers to, in the context of race and sexuality, as
the "relentless parade of insults" accomplished through terms such as the
cripple, the lame, the retarded, the blind, or the spastic. Still, the
assumption that people-first phraseology is devoid of objectification, and
is simply appropriate and non-hurtful, "dams" the possibility of critical
analysis of this unified discursive formulation of disability, which is
publically expected among many institutions and among disabled and
non-disabled people in Canadian society. My work here, however, flows from
the assumption that all speech gives rise to and reflects a particular
re-presentation of the meaning of people. This assumption grounds the need
to analyse the consequences of the current linguistic formulation of disabil
ity.
As Smith (1999: 195) reminds us, unified discursive representations are best
understood as the social organization of ruling relations, and ought to be
studied as such. Through the universal use of people-first language in
Canada and its status as "objective" (non-derogatory, non-hurtful?), forms
of consciousness--and in this case forms of people--are created whose
difference is overridden, or repressed (Smith, 1999: 33-36). There is,
according to the people-first language "game" (Wittgenstein, 1980: 140),
supposedly one correct way to speak of disabled people and thus one correct
way to imagine disability. The fundamental questions of this paper are: What
representation of disability undergirds this language, and What
representation of disability does this language game (re)insert into the
world?
Touched by the Other
A current Canadian government document, In Unison: A Canadian Approach to
Disability Issues (Canada, 1998: 11 [hereafter referred to as In Unison]),
claims to represent the status and desires of disabled people in Canada and
does so through a typical and exemplary use of people-first language. [2]
The introductory line of In Unison (1998: 11) proclaims, "Disability touches
everyone." Yet some Canadians--according to the government, over four
million--have been touched with more force than others and have "reported
some level of disability." People can report some level of water in their
basements, or some level of anxiety in their lives, and people can also
report some level of disability in their bodies, minds or senses. Reporting
on a level of disability is presented by In Unison as quite distinct from
being touched by disability. While disability touches everyone, only a
certain number of Canadians report some level of disability "People with
disabilities" are, first and foremost, reportable: people who ca n be
counted by measuring and surveying levels of impairment. Such counting
requires that disability be conceptualized as a measurable condition--as
possessing a level. One key way this measurement was accomplished by the
Canadian government was through the Health and Activity Limitations Survey
(HALS). [3] This survey aimed to ascertain individuals' functionality
through questions regarding such actions as moving from room to room,
walking up a flight of stairs, dressing, cutting toenails, reading ordinary
newsprint, ability to hear what is being said in a conversation with other
people, and ability to speak and be understood (Gadacz, 1994: 32).
Functional ability and inability are also measured in terms of severity,
e.g., "Is your inability to walk up a flight of stairs mild, moderate or
severe?" (33)
Some people live with measured conditions of limitation and lack and they
become "people with disabilities." A disabled person does not need to affirm
that she or he conceives of her- or himself as a "person with a disability";
she or he needs only to report on a measurable, thus surveyable, condition
of limitation or lack. People-first language organizes a consciousness of
disability as a condition of limitation and lack that some people "have." It
thus overrides more political conceptions of disability, such as "I am
disabled by my culture"; "I belong to the largest physical minority in
Canada"; "I experience my world, my self, and others differently now that I
am disabled"; or "Canada has been built to exclude people like me." It also
overrides more patronizing (e.g., suffering from ... ) and pathetic (e.g.,
stricken by ... ) conceptions of disability.
Still, people-first language does provide for an apolitical expression of
disability such as "I'm not disabled, I am a person whose leg happens to be
missing." Nonetheless, the condition of a "missing leg" would become part of
Canadian disability rates and the possessor of a missing leg would still be
enumerated among the ranks of "people with disabilities"; more specifically,
he or she would be counted among the ranks of the "mobility impaired" (53%
of those counted as persons with disabilities [In Unison, 1998: 35]).
People-first language supports accounting procedures where one can be
counted as a "person with a disability" without having any
self-understanding as such. Thus, "people with disabilities" are made
persons first, i.e., persons who happen to have a measurable condition of
limitation or lack, which is regarded as having nothing to do with being a
"person." At the same time, disability is regarded as abnormal limitations
that happen to be "attached" to over four million Canadians. This follows t
he logic of the taken-for-granted aim that the "focus should be placed on
the person and not the limitation" (Nova Scotia, 1999: 1).
The distinction between being touched by disability and being in possession
of one is further illustrated in this "Vision Paper." The author and the
reader are positioned as those "in touch with" but not "in possession of" a
disability. Disability is not something that the In Unison authors report to
have, insofar as disabled people are referred to throughout as "they." For
example: "They face personal, social and economic disadvantages and barriers
that prevent access ...."; or "They often face economic hardship in their
daily lives and many live below the poverty line"; or "they want a nation
which demonstrates leadership with respect to disability concerns" (In
Unison, 1998: 11). Despite the fact that In Unison begins by reminding
readers of everyone's connection to disability, and even informs readers
that "Most individuals experience some from of functional incapacity or
limitation as a normal part of aging," the report does make clear, through
its constant use of "they," that it is written by, and dire cted at,
non-disabled people. (Thus there is no irony in subtitling the document a
Vision Paper.) In this enterprise of othering, people-first language ensures
that same clear and certain image of bodily limitation or sensorial lack is
re-inscribed only on "them." In other words, the mythical dichotomy, if not
the chasm, between the pathological and the normal is reinforced
(Canguilhem, 1989 [1966]; Davis, 1995; Foucault, 1970; Goffman, 1963:
126-139; Thomson, 1997).
This othering is all the more interesting in light of the fact that many
government reports typically frame "authorship" as a supposedly
non-essential issue. Such reports are often officially written by no one in
particular, under the assumption that they could be written by anyone who
has all the "facts." In the 49 pages of In Unison, for example, the
possibility of an author is found on the final page in a brief
acknowledgment: "The Federal/Provincial/Territorial Ministers Responsible
for Social Services would like to thank Sherri Torjman, Vice President of
the Caledon Institute for Social Policy, for her contribution in developing
In Unison ...." In contrast, the title page of In Unison announces
authorship obliquely in that this document is attributed to
"Federal/Provincial/Territorial Ministers Responsible for Social Services."
Written by no one in particular, such reports are usually directed to
everyone in general. This report on disability issues, however, is not
written to an us insofar as "we" (dis abled people) remain a "they"
throughout.
Of course, there is nothing new about non-disabled people speaking about the
nature of the hardship that disabled people face; nor is it unusual for
non-disabled people to speak of what disabled people seek, want, wish or
desire. Moreover, it is not typical that an authoritative voice is a
disabled one, except perhaps when one speaks of "personal" stories of
"suffering" a disability Habit and power relations are certainly at play
Nonetheless, the question remains: How does people-first language enable and
frame this speaking-on-behalf-of disabled people? This is not a
speaking-on-behalf-of that rings with the same patronizing tone as is found
in phrases such as "They just need a helping hand," or "With your donation
today, they too can have a life." But what in particular comes about through
achieving the "othering" of disabled people through people-first language?
If disability touches everyone, how, in particular, does disability touch
non-disabled people through people-first language?
The Social Significance of "People with ..."
As a way to draw out the social organization accomplished through
people-first language and to address the various questions I have raised, I
will more explicitly address the representation of disability found in In
Unison. Here is the introductory paragraph of In Unison in its entirety:
Disability touches everyone. In 1991, 4.2 million (16%) Canadians reported
some level of disability. Aboriginal Canadians are particularly affected
with over 30% of Aboriginal persons reporting a disability-almost double the
national average. All Canadians have some experience with disability through
their own experience, contact with relatives, colleagues or friends. Most
individuals experience some form of functional incapacity or limitation as a
normal part of aging (11).
However disability touches the non-disabled reader, that it does touch is
certainly taken-for-granted. Non-disabled people are positioned as those who
need to be reminded that they do now and will in the future be in contact
with "people with disabilities." Statistically speaking, the probability of
spending at least part of one's life as a disabled person is close to 100%
(Zola, 1982: 242). This probability is closer to a certainty if one is
Aboriginal. Despite the statistical normalcy of living in and beside
disability, In Unison believes that all Canadians need to be reminded that
"they do indeed have some experience with disability..."
In Unison implies that touched as people are by disability, non-disabled
Canadians rarely see a disabled person, since disabled people rarely
participate in the institutions of society, especially in employment:
They face personal, social and economic disadvantages and barriers that
prevent access to the same opportunities as other Canadians. Persons with
disabilities are more likely, for example, to have lower education levels
and to be socially isolated and discriminated against in the workplace. They
often face economic hardship in their daily lives and many live below the
poverty line. Women and Aboriginal persons with disabilities, in particular,
experience greater disadvantages, reporting higher incidences of
unemployment and poverty (11).
The high rates of poverty and unemployment, as well as low levels of
education, that face "Canadians with disabilities" influence whether
non-disabled people are likely to have a chance to "see" disabled people as
"persons first," insofar as they may not see disabled people at all.
According to a Human Resources Development Canada report (Human Resources
Development Canada, 1998), 17.7% of the working-age population of Canada is
disabled (2,297,135 people). Among federally regulated employers, only 2.27%
of this workforce is composed of people with disabilities. In general, over
half (52%) of working-age disabled Canadians will not be seen in anyone's
workplace tomorrow (36). [4] As Tom Shakespeare notes: "Because of the wide
spread segregation of disabled people, many non-disabled people may not have
come into contact with disabled people, and may be both ignorant of what is
expected, and anxious about saying the right thing." Nonetheless, disability
is "disturbing to our expectations of order, normality an d convention and
... anomaly demands a response ...." (Shakespeare, 1999: 49). People-first
language is one response.
It is likely that many non-disabled Canadians' only experience with
disability will be found at home, on the streets, or perhaps in reading In
Unison. Moreover, people-first language has been ubiquitous for many years
now, and still the United Nations (1996) reports that disability is a
worldwide "silent crisis" leading to abysmal economic and social conditions
for "people with disabilities." People-first language has not led to a
greater understanding of disability and subsequent reduced levels of
discrimination, nor to reduced levels of planned exclusion. [5] Nonetheless,
In Unison and the United Nations persist in advocating people-first language
as a key part of the solution to the problem of isolation and exclusion.
Despite In Unison's hint that the difference disability makes might best be
located in disabled peoples' common fate as an isolated and excluded
minority group, this is not the way that the report represents the issue of
diversity with respect to disability. Instead, the second introductory
paragraph says:
Canadians with disabilities represent a diverse group which includes
individuals with physical, sensory and mental disabilities. Disabilities
vary in terms of severity, longevity, cause and consequences. Some
disabilities remain static throughout a person's life while others may have
periods of remission or regression (11).
In Unison represents the diversity of "Canadian citizens with disabilities"
strictly in terms of the variation of and in conditions. The version of
diversity that disability is said to represent is thus uniform in character.
Difference is located only in conditions of bodily or sensorial impairments.
The only diversity that this group conceived of as "people with
disabilities" represents is a decontextualized, depoliticized and,
ironically, depersonalized one (which, of course, finds its sensibility in
the context and implicit politics of people-first ideology played out to its
extreme).
Bodies differ, sense-abilities differ, minds differ. All people possess
these differences, but only some of these differences have been defined in
terms of lack and limitation--disability. Defining differences as noteworthy
only in relation to lack and limitation leads to a form of diversity defined
in relation to type, kind and consequence of these various lacks and
multiple limitations. This version of diversity needs "people with
disabilities" language if it is to be seen as diversity at all. If
disability is only lack and limitation, then self-identification with "it"
would require understanding one's self as the negation of ability, and this
would be at least strange, if not further disabling. Instead of the politics
of this abstract and asocial conception of disability being re-thought, it
is simply re-enforced through people-first language, thus opening a gap
between a self and "their" disability--nothing about the meaning of
disability has changed. Separating the person from his or her disability is
the aim of people-first language, an aim that does not acknowledge that the
social consequence is the alienation of persons from a political
understanding of disability. Such alienation means that the actual political
and social context within which disability is made manifest, and the actual
work (Smith, 1999: 5) that a disabled person must do in order to negotiate a
place in the world, are covered over by a focus on diversity of impairments.
Thus "diversity" is represented as nothing other than anomalous or abnormal
physical, sensorial and mental conditions.
A Toronto Grade I student recently diagnosed as dyslexic; a middle-aged
rural Nova Scotia schoolteacher recently diagnosed with diabetic
retinopathy; a man who has become a multiple amputee due to a workplace
accident that also killed and injured some of his co-workers; an upper
middle-class suburban girl born with cerebral palsy; a WASP and an
Aboriginal who, for whatever reason, find themselves using a wheelchair, in
different communities with different barriers; and over four million other
people share much in common, according to people-first articulations of
"them." All will be defined according to the World Health Organization's
(WHO) classification system, insofar as all can be "seen" and counted
amongst those who possess a "loss or abnormality of a psychological, or
anatomical structure or function" (In Unison, 1998: 33, 11). [6] The rich
diversity of this group will be transformed into the shallowness of the
artificial diversity depicted as a loss or abnormality that has led to a
"restriction or ina bility to perform an activity in the manner or within
the range considered normal for a human being" (33). Despite this conception
of disability as loss, abnormalcy, restriction and inability--which serves
to represent disabled people as outside the realm of normalcy--all will
nonetheless be counted as people who face common fates (rates) of
unemployment, lack of education and isolation. Finally, disabled people are
imagined as believing in, and as representations of, the power of
people-first language to offer a solution to the problem; namely, to
dismember disability from the self.
Normalcy and Personhood
What is reflected in organizations such as WHO and the Canadian government
in their conceptions of disability is a medicalized version of impairment.
According to this medical logic, what is most important, most interesting,
most notable and most deserving of emphasis is a shared unified stance in
"personhood." [7] James Overboe (1999) criticizes this view:
I believe that the term "person with a disability" demonstrates and is
underscored by a "normative" resemblance that we can attain if we achieve
the status of being deemed "people first" (with the term's emphasis on
independence and extreme liberal individualism) in the eyes of an
ableist-centered society (24).
People-first language makes the claim that a resemblance of normalcy can be
attained if all people and institutions emphasize, over and over again, that
disabled people are indeed "people." What people-first language aims to
bring non-disabled people "in touch with" are representations of normalcy,
or something that appears to approach status quo assumptions as closely as
is possible. While "disability touches everyone," and while "most people
experience some form" of disability, readers of In Unison are still
positioned as those who stand in need of convincing that when the touch or
experience of disability comes around, they should only focus on an extreme
liberal and abstractly independent form of personhood.
"Despite their diverse profile, Canadians with disabilities share many
common concerns" (In Unison, 11). Even before In Unison makes this claim of
commonness, many commonalities have already been established. Citizens with
disabilities are depicted in the document as unified group not only in terms
of wants, needs and hardships, but also in terms of their shared singular
conception of disability. This depiction suggests that over four million
Canadians share a common conception of disability as: 1) unquestionable; 2)
located in individuals whose bodies, minds, or senses have "gone wrong",
which 3) leaves some version of a unified, disembodied personhood intact,
undisturbed, and in conformity with all other non-disabled Canadian
citizens.
It is this version of common-personhood, untouched and undisturbed by
disability, with which non-disabled Canadians are reminded to "get in
touch." Thus disability is transposed into an invitation to get in touch
with the self-same: "the great equalizer--normality" (Overboe, 2999: 24).
There may be something virtuous about seeking the self-same-self in the face
of the anomalous, the different or the excessive. But recall that this quest
for personhood or sameness is framed within an ongoing process of othering
disabled people, achieved through the "they want... they need... they are
...," and is also accomplished through a further distancing of disability
from those regarded as in possession of "it." Within this language game,
disability is made into an asocial and apolitical condition of measurable
lack and limitation. Disability is made other to the self who possesses it.
The commonality that proceeds from the common concerns of people with
disabilities (for example, hardship, discrimination, "they want a nation
which demonstrates leadership with respect to disability concerns") thus
frames certain concerns as indeed "common." All the variety that is called
disability is attached to individuals, to individual people, to individual
Canadians. This individuation of disability as an attached condition may
sound innocuous, but it is not.
Disability is not being noticed, characterized, defined, measured or
responded to by anyone outside of the people who embodied it. For example,
there is no hint that disability is best conceptualized as a relation
between people and the environment (Gadacz, 1994: 5), or that environments
are disabling (Oliver, 1990; 1996), or that disability is a policy matter
beset by conflicting models of how difference and inequality ought to be
addressed (Bickenbach, 1993). Further, there is no hint that disability is
constituted from taken-for-granted notions of normalcy (Davis, 1997; Linton,
1998; Thomson, 1997), or that disability always appears through narrative in
social life and should be examined as such (Corker and French, 1999;
Michalko, 1998; 1999; Michalko and Titchkosky, 2001; Mitchell and Snyder,
1997; Titchkosky, 1998; 2000; 2001; Zola, 1982). All of these alternative
ways of locating the social significance of disability share a bracketing of
the taken-for-granted good of medical versions of disability, an d an
insistence that how disability is interpreted and represented is of primary
concern.
The consequence is that disability is conceived and programmatically treated
as an individual trouble and not a public issue. "People with disabilities"
language makes two central and significant interpretive moves: first, it
separates the individual from disability and, second, it circumscribes
disability as some-thing (bad) that is only understood in relation to its
attachment to individuals. While ironic, this is also political and, while
political, its politics are hidden. Disability is made an individual matter
"because" it is what is the matter with some individuals. The hope of
people-first language, in its current use, is that individuals will manage,
cope with, overcome or otherwise put some distance between their selves and
what is the matter with them.
Everyone is touched by disability, yet no one, according to people-first
language, is intimately "bound with" (West, 1995: 16) disability, and no one
"exceeds" the common representation of disability as lack and limitation
(Shildrick and Price, 1996: 105). Disability is something that individuals
have to deal with, but only as individuals. Disability is not something that
individuals are, and no one needs to deal with people who have an identity
as "a disabled people"--an oppressed minority group. We are all individuals,
and we all will be touched by disability, yet no one will be transformed,
changed, remade or renewed, for there are always only individuals dealing
with the stuff of disability (its severity, longevity, type, etc.).
Thus:
Persons with disabilities desire a country which takes an holistic approach
to disability issues that is sensitive to individual needs and ensures that
Canadians with disabilities have input into the policies, programs and
decisions that affect them (In Unison, 11).
A "holistic approach" to disability is being formulated as the interaction
between "individual needs" and "societal responses" to these needs through
policy, programs and decisions. Ironically, this holistic approach requires
the separating of disability from the individual as well as the
individuation of disability Such a "holistic" response requires an asocial
and apolitical understanding of disability, and also requires that
Canadians, disabled or not, refrain from reflecting upon how people-first
language mediates mystified and medicalized relations to disability and
organizes disability as oppressive relations. The history of the development
of a material and ideological environment that excludes so many becomes an
individual's history of dealing with his or her disability and how others
might best deal with such individuals and "their" personal (yet common?)
desire for inclusion and participation. The linguistic and social
arrangements that serve to radically "other" disabled people are deemed
"fixed a nd healthy"; after all, disabled people are now "just people" who
happen to possess something "normal" people do not. The realms of disability
knowledge production (Titchkosky, 2000) that frame countless details of
disability as limitation and abnormality are now further
justified--governments and other organizations are just trying to find the
"best" way to deal with the individual and the individualized problem that
is disability It is important to interrogate how people-first language is
tied to the medicalization of disability and is thus playing an active role
in stripping disability of its real politics, as well as stripping disabled
and non-disabled people of a social understanding of disability.
Medicine and People-First Language
To medicalize disability is to treat disabled people as essentially the
embodiment of limitation and lack--"they" are possessors of conditions
formally and informally measured against taken-for-granted conceptions of
the "normal." While such treatment and measurement is, of course,
socio-political action, the medicalization of disability requires the denial
of a politics and a denial of itself as a form of social organization
(Crawford, 1980; Oliver, 1990; 1996; Zola, 1977). The medicalization of
culture is, of course, old news to sociology. The medicalization of
disability, however, has barely touched the collective consciousness of
sociology (Titchkosky, 2000). Sociologists, government officials and helping
professionals still address disability in terms of "attitudes and responses"
to it, and people first language currently supports, and is supported by, a
conception of disability that is removed as far as possible from social
life. This distancing is achieved by conceiving of disability as an
"objectively given" (Goode, 1996) aspect of bodily anomaly that comes along
with some people and can thus be charted, defined and measured as if this
has absolutely nothing to do with constructing a collective representation
of disability within an ableist culture. Any "vision paper" or "sighting" of
disability produced under such auspices can only guarantee the
re-inscription of the definitional power of the bureaucratically informed
gaze of the able-bodied eye (Foucault, 1979). Such an envisioning continues
to circumscribe the meaning and significance of disability as abnormal
limitation and lack embodied by individuals. Of course, "seeing" disability
in this way serves to make it into the site/sight of the (mis-taken) belief
that the body somehow appears directly, as if it is not brought to us
(non-disabled and disabled people alike) through the mirror of cultural
understandings (Bordo, 1993; Butler, 1993; Ettorre, 1998).
In its most dogmatic form, people-with-disabilities language can best be
understood as a form of social organization that attempts to make absent any
possibility of transgression that could lead to a socio-political
understanding of disability. This prevention of the possibility of
transgression, while never fully successful, occurs in many different ways.
Most obviously, people are separated from their disability Whatever else
this separation achieves, it allows for the normalization of requests for
disabled people to watch, chart and report on an ever growing number of
details of limitation and lack, and to do so, ideally, in an
un-self-conscious way. The prevention of the possibility of transgression is
also found in the organization of the relation between non-disabled and
disabled people, and in the ongoing mystification of the relation between
normalcy and pathology. One consequence of this lack of transgression is
that the possibility of a political and social relation between identity and
embodied di fference is repeatedly crushed. Another consequence, to which
Overboe (1999) alludes, is the denial of the possibility that disability is
a critical space where the dominance of the ideology of individualism can be
interrogated for all people.
It is undoubtedly true that people-first language originated in the desire
to resist disability as a master-status, and thus to reject images of people
completely mastered by disability defined as a set of embodied limitations.
Note, however, that through people-first language the concept of disability
has remained the same--only a little distance has been enforced between it
and its possessor.
Alternative phraseology is not the main issue here, although I would suggest
that an openness to a diversity of terms and expressions of disability would
be beneficial to all. Diverse expressions make possible transgressions of
the singular conception of disability. Thus, the point is not "say it this
way...." The point is, instead, to examine what our current articulations of
disability are saying in the here and now. An openness to alternative
linguistic formulations of disability might lead to, and grow from, the
understanding that disability, in its social meaning, exceeds and even
defies strictly medicalized articulations of "people-first."
An examination of current dominant articulations of disability represents
disability as that which does indeed exceed the collective's medicalization
of it. For example, this paper's analysis of people-first language has shown
the way in which it is "normal" to conceive disability as apolitical and how
it (disability) is made absent from "personhood," if not from our concept of
humanity. Nonetheless, this paper demonstrates the possibility that
disability is the site par excellence for revealing the narrative of how the
ideology of individualism is re-inscribed upon the disabled subject, upon
knowledge of "people with disabilities," and upon programs and policies for
them. Alternative articulations can also show disability as the site par
excellence for revealing the necessity of interrogating our collective
conception of "personhood," no matter who embodies it. An analysis of
disability discourse can help disabled people and non-disabled people "get
in touch with" the manner and form of constituting the mea ning of people.
Still, whatever else disability has to offer to collective understandings of
the human condition, it is "high time" (almost 20 years after the
International Year of the Disabled) to understand people-first language as
one of the dominant ways to maintain clear, certain and manageable
boundaries around bodies, minds and senses while denying disability any
positive actuality.
(*.) This research is supported by a standard SSHRC grant (410-99-0074).
This manuscript was first submitted in March 2000, and accepted in March
2001.
(1.) For example, I have found pamphlets, charts, and policy statements
regarding the recommendation to refer to disabled people as "people with
disabilities" at various levels of the following organizations, institutions
and industries and their textual products: the World Health Organization;
the United Nations; Canadian federal, provincial and territorial government
offices and ministries, including all Human Resources Development Canada
(HRDC) offices: all Canadian government reports regarding disability and
human rights published during the 1990s; many organizations for or of
disabled people; most national newspapers; most media outlets, including the
television, radio and Internet media of the CBC; Canadian graduate-program
language codes and university ethics boards' policies and procedures; some
university presses; high school and university counselling offices;
university accommodation policy and procedures; much of the rehabilitation
literature; a few sociology of deviance textbooks; and in the gram
mar-checking utilities of Microsoft Word and Corel WordPerfect
word-processing software.
(2.) By "typical" I refer to the consistency of language use, e.g., in this
document there are no expressions of disability that violate the
taken-for-granted sense that disability is beat regarded as an "add-on" to
personhood. The report is "exemplary" insofar as the programmatic "vision"
for tackling disability issues is, as I shall show, absolutely in compliance
with all that people-first language requires. While I do not have space to
address it here, it is also important to remember that policy and programs
across Canada are currently being developed on the basis of this "vision
Paper." In fact, the document claims that it "sets out a blueprint for
promoting the integration of persons with disabilities in Canada" (In
Unison. 1998: 5).
(3.) In 1991, the Canadian government began to implement a process whereby
rates, types and extents of disability could be measured. These measures
were conducted in 1994 and are called the Health and Activity Limitations
Survey or HALS. At this point funding stopped. All government documents that
make mention of the number of disabled Canadians rely upon this 1994 survey.
(4.) The In Unison data on employment rates of disabled people do not make
clear whether the 300,000 institutionalized disabled Canadians, or the
unknown number who are in "sheltered" work situations, are included in these
counts or, if they are included, how. Moreover, the document links an
unexplicated conception of "severe" disability to the very high rate of
non-labour-force participation of disabled people: "Persons with severe
disabilities are least likely to be in the labour-force" (36). Issues such
as inaccessible public transportation and workplaces, the dismantlement of
support services and access to technology, discrimination, and
stigmatization do not figure in In Unison's use of the phrase "person with a
severe disability."
(5.) For example, the building code still maintains a minimum standard for
doorway width at 760 mm (29.9 inches) while the average (non-motorized)
wheelchair width is greater than this.
(6.) See Oliver (1990), for a critical analysis of WHO's definition of
disability.
(7.) Of course, if a disabled person is to secure government funds or other
supports, argue for a workplace accommodation, or lodge a human rights
complaint, it will be the disability that will be emphasized and documented,
and not her or his stance in personhood.
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Figure 1
Word Choices: A Lexicon of Preferred Terms for Disability Issues
Instead of Please use
Autistics or "the autistic" Persons with autism
or who have autism
Birth defect Congenital disability, blind
from birth, deaf from birth
Blind A person with no vision or
almost no vision is blind;
people with some sight are
partially sighted, visually
impaired or have low vision,
not partially blind
Brain-damaged Brain-injured
Confined to wheelchair, Person who uses a wheelchair
wheelchair-bound (a wheelchair provides
mobility for persons who
cannot walk; it is not
confining)
Crazy, insane Mentally ill
Crippled Disabled or, to be more
specific, walks with
crutches or leg braces
or uses a mobility aid
Deaf and dumb, deaf mute Deaf (person with profound
hearing loss who communicates
by sign language). deafened
(deaf later in life).
culturally deaf (exposed to
sign language since
birth or early in life)
Epileptic Person with epilepsy
Fits, spells Seizures
Handicap Person with a disability
Hearing-impaired Hard of hearing (person
with any degree of hearing
loss who communicates
primarily by speech)
Lupus sufferer Person with lupus
Mongolism Down's Syndrome
MS person Person who has multiple
sclerosis
Normal Not to be used as opposite
to disabled; say disabled
and nondisabled or dis-abled
and able-bodied, or use
more specific terms such
as sighted, ambulatory
Patient In a medical context or
referring to a relationship
with a medical practitioner
Physically challenged Physically disabled
Mentally retarded Persons with developmental
disabilities,
developmentally disabled
Stuttered Person with a speech
impairment
The disabled Persons with disabilities;
disabled people do
not want to be categorized
as "the disabled"
The blind Persons who are blind
The deaf Persons who are deaf
The deaf-blind Deaf-blind persons (people
who have varying
combinations of visual
and auditory impairments)
TO BE AVOIDED
Afflicted - Suffer/
sufferer - Victim
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