From: FCTY7310@RYEVM.RYERSON.CA (Gary Woodill)
Newsgroups: misc.handicap
Subject: VOICE AND DISABILITY
Date: 6 Oct 92 20:45:20 GMT
Reply-To: FCTY7310@RYEVM.RYERSON.CA (Gary Woodill)
Organization: Olivetti AFD
X-Fidonet: Split
Originator: wtm@sheldev.shel.isc-br.com

Index Number: 24624

[Forwarded from the Disability Research List by Patt Bromberger
 <patt@squid.tram.com>]

The following paper is recent work on the semiotics of disability,
and is being posted for reaction and discussion. It has not yet
been sent out for publication, so feedback and suggestions are most
welcome. Please post them to the list so that everyone can
participate.

                   The Disabled Body as Text:
      reading the signs of difference as cultural metaphors

                          Gary Woodill
               School of Early Childhood Education
                 Ryerson Polytechnical Institute
                         Toronto, Canada

                      Jean-Francois Ravaud
                         Isabelle Ville
                           INSERM U215
                          Paris, France

                       Elizabeth Bredberg
         Department of Instruction and Special Education
           Ontario Institute for Studies in Education
                         Toronto, Canada

Paper presented (in French) at the "Language and Practices of
Social Intervention" Conference, Rouen, France, April 1992.
==============================================================

     The American ethnomethodologist, David Goode, tells of an
early encounter as a graduate student, with a very severely
handicapped person while on a tour of a local State Hospital for
the mentally handicapped. Here is his description of that event:

     I went into one of the rooms near the end of the hall and
     saw a hugh bed board at the head of the bed whose
     occupant was hidden from view. The room was empty,
     without objects on the walls or toys. It was brightly
     lit. I walked toward the bed and peeked over the edge and
     was as intensely horrified as I have ever been in my life
     at what I saw. A huge head, later I was told over forty
     pounds, attached to this stunted body. Horrible bedsores
     covered what appeared for a moment as an almost unreal
     monstrosity - like a Hollywood inspired nightmare, though
     too real, too much an actual sensory experience to ignore
     as fantasy. He, it turned out to be a he, was the most
     profane looking human being I had ever seen. (Goode,
     1984, p. 229-230)

     David Goode's immediate reaction was to feel nausea and to
start to faint. A nurse appeared from nowhere and took his arm to
steady him and to reassure him. At the same time, she said, "Oh, I
see you've found Johnny, my favourite. I've been here three and a
half years and he's my special favourite. He's eighteen and I'm his
mommy during the day...He loves rock and roll, I usually open the
window up so it's bright and put on the music loud. He loves when
I take his hand and clap them to the beat. He has his likes and
dislikes, you know. He loves his red flashlight..."

     A few moments later, back out on the ward, David met a young
physician who informed him that this young man "was hydrocephalic",
born before the invention of the shunt operation, and that the
intracranial pressure had made him deaf, blind, and completely
paralysed. "The clinical profile was hopeless - no possibility
existed for remediation, therefore the case was essentially
custodial, the person as low functioning as one could find" (p.
230).

     From this story we can identify at least five different
"voices" (Bakhtin, 1981), although this is not an exhaustive list
of the possible voices available when a disabled person is part of
the "scene". In the above story, we can readily see 1) the cultural
voice - David Goode's immediate interpretation of what he saw, 2)
the intimate or "caring" voice of the nurse, 3) the professional
voice of the doctor, 4) the nearly absent or diminished voice of
Johnny, the severely disabled young man, which we may call the
marginalized voice and 5) the analytical voice of both David Goode
and the authors of this paper, who use this story to understand
what happens when a non-disabled person encounters a severely
disabled person.

     It is not possible in a short presentation to analyse each of
these voices in great detail. Rather, we will raise a few issues
about the first four voices, and to point to the direction that a
deeper analysis of this material might follow.

Voice and Text as Signs of Difference

     According to the philosopher C.S. Pierce, a sign is "something
which stands to somebody for something in some respect or capacity"
(quoted in Eco, 1984, p. 14). Two categories of signs under
discussion in this paper are voice and text. According to Bakhtin
(1981), the Russian critic of the novel (who was himself disabled),
voice "is the speaking personality, the speaking consciousness. A
voice always has a will or desire behind it, its own timbre and
overtones" (p. 434). In both the novel and the non-fiction
narrative (such as the story above), it is possible to identify a
multiplicity of voices.

     Text is a set of signs which are codified and which produce
meaning for the reader. Or, perhaps in keeping with post-modernism,
we should more accurately say that text is a set of codified signs
interpreted metaphorically in ways which are meaningful to the
reader. As Lakoff and Johnson (1980) have argued in Metaphors We
Live By, much of the meaning in our language is based on a set of
physical metaphors. The set of metaphors available to us are those
learned through our cultural history, and transmitted to us through
schooling (Woodill and Davidson, 1989), parenting, and the various
media (see Ravaud, 1988; Ravaud and Ville, 1988; Ravaud, Ville,
Saladin, and Casanova, 19??). Thus, we refer to the particular set
of metaphors available to us as cultural metaphors.

     When faced with a set of signs which evoke a particular
prototypical image, we tend to place that image into a metaphorical
category which we know and which seems to best fit with the person
or image of the person we encounter (Lakoff, 1987). Metaphors may
also be a form of dealing with a topic which is uncomfortable, and
therefore the metaphors for disability may also become euphemisms
(Allan and Burridge, 1991).

     Voice and text are often overlapping - that is, voice usually
includes text but also includes more, e.g. non-codified
communicative gestures; text may be present in voice, but
codification of signs may also be involuntary - a certain way of
walking, a type of voice, the use of a white cane, may all be
elements which are "read" but which are not intended to send
specific messages to the other person in the encounter. Thus the
presence of a disabled person may generate a voice to be heard by
another person, or a text consisting of codified stereotypical
signs of difference which can be read by another person, or a set
of non-codified signs of difference to be interpreted through the
most available cultural metaphor, or some combination of the above
possibilities. It is impossible for any person not to generate text
for others to read, or to paraphrase Bakhtin, the self is a story
in which "I author myself" (Holquist, 1990, p. 27).

     Some visible signs of difference are generally taken to be
unambiguous; wheelchairs, white canes, and hearing aids are
physical devices which mark a person as having a disability in our
culture. Other signs are also visible, but more ambiguous, such as
dark glasses, bizarre behaviours, and differences in speech. These
ambiguous signs are open to wider interpretation, and often need
the combination of several cues in order to convey a clear message.
Still other signs are invisible, but require the "confessional
technology" (Foucault, 1979) of psychological or medical testing
for a difference to be noted and spoken about.

     The signs of difference are read metaphorically in different
ways by different people, depending on what position they hold in
society, and what position/stance they have in regards to the
disabled person they encounter. We now turn to an examination of
the four voices in the story told by David Goode.

The Cultural Voice

     We have labelled David Goode's initial reaction to Johnny as
a cultural voice, because it is a reaction that most people in
Western society might have, especially if they have not had a close
relationship with a severely disabled person. The lack of a close
relationship with a disabled person is common for most non-disabled
people in that most severely disabled people are usually found in
controlled institutions such as hospitals, schools, and sheltered
workshops, and less severely disabled people are still relatively
rare in the ordinary milieu of society.  Although it is changing,
in Western societies, severely disabled people are not commonly
found in the general community, participating in the activities of
daily life.

     An encounter with a severely disabled person is therefore
often shocking. The process involved can be conceptualized as
follows:

     1) Disabled persons often have physical or behavioural
differences from expected norms of the society.

     2) These differences are read as text. We refer to this text
as "signs of difference".

     3) The reading of the disabled body as text is an
interpretation based on the cultural metaphors available to the
person doing the reading. In the story above, the dominant metaphor
was of the disabled person as "monster", a metaphor with a very
long history in Western societies. There are other possible
metaphors used for interpreting disabled persons in popular
culture. Some of the variations of the professional voice found in
the literature are found in Table 1.

     Metaphors of disability, which ordinary persons use in
everyday life to understand the forms of visible disability (the
"text" of the disabled body), can also be used to understand and
speak about other phenomena. Metaphors of disability are also used
to make negative comments on non-disabled persons who are seen as
lacking in some ability or as having characteristics outside
societal standards. We have a set of examples of that phenomena
from the world of politics, where disability is used as a metaphor
of political incompetence.

Table 1 - Variations of the Popular Cultural Voice on Disability

Model          Generative Metaphor(s)         Related to

Divine Order   Disability as Divine Plan      Charity,
                                              Fortune/Misfortune

Humanitarian   Disability as Misfortune       Giving to Charity,
                                              Telethons

Medical        Disability as Sign of          Hospitals, Medical
               Sickness                       Care

Outsider       Disabled person as "Other"     Monsters, Strangers

Punishment     Disability as Punishment       Sin

Social         Disability as Threat           Monsters, Horror
Control                                       Shows

Zoological     Disabled person as Pet         Freak Show, Circus
               Disability as Entertainment    Wrestling, Dwarf
                                              Tossing

_________________________________________________________________

The Intimate or "Caring" Voice

     In David Goode's story, the nurse's voice is an intimate
voice. She is Johnny's "mommy during the day" and speaks in terms
of his likes and dislikes.  Unlike the clinical voice, the
speaker addresses or discusses the disabled person as a figure
with whom an interactive relation is a possibility, whose
response to the relation is itself a source of joy for both
participants.

     Of the voices discussed in this paper, the intimate voice is
the most infrequently heard.  Blackwell-Stratton et al. (1988)
discuss this in terms of the infantilization of the disabled
person:

     How can...(the disabled woman) assert herself against
     the belief that a disabled person is like an eternal
     poster child:  cute, but not sexy;  always the cared
     for, never the caring. (p. 307)

     Such a role renders the child-parent relation one of the few
(if not the only) forms of intimacy likely to be seen as
appropriate to the disabled person, and the only one in which
address in an intimate voice is likely to occur.

     Intimacy and care. The disabled person's voice as care-giver
is very rare, and indeed often regarded with suspicion by others.
Lonsdale (1990) comments on the range of negative responses
(cultural, clinical, and parental--intimate) to the idea of being
a disabled mother:

     This is due to many things:  a belief that disabled women
     would not be able to cope, that they are asexual, that the
     children of disabled parents will suffer, that the
     disability can be inherited, and that child-rearing requires
     physical mobility and dexterity. (p.76)

     The intimate voice of the parent of the disabled child (or
child-figure, who may be of adult age) is often not free of
negative overtones.  Lonsdale (1990) notes the reluctance of
parents to surrender their care of a disabled child into an adult
role such as marriage.  The care of a physically dependent person
may cause a parent or other care-giver to develop a negative
attitude towards the disabled person, in contrast with the more
positive, but detached, clinical voice.

     Oliver (1981), writing of paraplegia, notes the existence of
"significant others", among whom he includes professionals and
care-givers, and "generalized others", who include society at
large.  He notes that among significant others, the clinical
attitude may be the more positive.

     To begin with, there are those professionals, doctors,
     nurses, physio- and occupational therapists, whom the
     paraplegic will encounter during his stay in a spinal unit.
     They will generally put forward a positive view of the
     nature of paraplegia and stress such factors as personal
     independence, the ability to work drive, compete in sport
     and so on...

     Then there are others like husbands, wives, close relatives
     and friends, children and so on, who may not have such a
     positive view of the nature of paraplegia and issues like
     the management of incontinence, the problem of sores, the
     adequacy of finance, inaccessibility and immobility may
     provide the crucial meanings of paraplegia. (p. 53)

     When the disabled person is the care-giver, it is more
likely to be as a grandparental figure rather than a parent
(show Picasso transparency). It is implied, if not explicitly
stated, in this painting, that the disability is acquired,
probably as a result of old age.  The disabled person has had a
role as a "normal" member of society, which has, prior to the
advent of age and disability regarded his/her voice as that of an
appropriate parent.

     Intimacy and sexuality.  If the voice of the disabled person
as a care-giver is rarely heard, that of the disabled person in a
sexual role is even more infrequent.  The comment of Blackwell-
Stratton et al. (1988) contrasting the poster child and the
beauty contestant, cited above, typifies the attitude of the
disabled person as neuter.

     The disabled person's intimate voice is often overwhelmed by
the social expectations of appropriate characteristics of
sexually active persons. The societal view of disabled persons as
sexual partners, whether with other disabled persons or not, has
been characterized by discomfort, often expressed in terms of
mirth and/or disgust. At the same time, the perception of the
disabled person as object of care tends to overshadow the
perception of the intimate relationship.  Marital intimacy is
interpreted as mutual care, even when disabled adults are parents
of a child.

     Sexuality without this dimension of tending disability is
often perceived as, in some respect, degenerate. This social
perception may arise from the cultural perception of the disabled
person as an "other" of a kind so radical that he or she is not
an appropriate participant in human sexual activity. Part of the
problem here is that disabled persons are seen as falling outside
the culturally constructed "standards of beauty" (Hahn, 1989).

     Perhaps the rarest intimate voices in the encounter with
persons with disabilities are those which are most general to
human experience, those of equality and friendship.  The
proximity of the parent-child relationships and of the sexual
relationships suggest that, when they do exist, the perception of
the person in his/her role will be strong enough to overcome the
cultural and clinical voices.  The more ordinary (for the non-
disabled) states of mutual equality and day-to-day friendship, on
the other hand, may be harder to achieve.  Table 2 summarizes
variations of the intimate voice in relations between disabled
and non-disabled persons.

Table 2 - Variations of the Intimate Voice with Disabled Persons

Model     Generative Metaphor(s)       Related to

Child     Disabled Person as Child     Receiving Care,
                                       Protection, Support

Equal     Disabled Person as Fellow    Advocacy, Solidarity,
          Human Being                  Siblings, Partner

Friend    Disabled Person as Friend    Friend Relationships

Parent    Disabled Person as Parent    Giving Care, Protection,
                                       Support

Sexual    Disabled Person as Sexual    Love, Sex
          Being

_________________________________________________________________

The Professional Voice

     In the story by David Goode, the young physician speaks in
medical terms about Johnny, the severely disabled young man. The
reading of signs in medicine has a long history, going back to
pre-Hippocratic times, where indexical signs were important to
ancient doctors. This practice of reading indexical signs has
been linked to the reading of animal traces (feces, footprints,
etc.) in hunting cultures (Sebeok, 1992).  Galen (131-201 A.D.),
the Roman physician who developed early surgical techniques using
pigs, was the first medical doctor to use the term "semiotics" to
describe the reading of bodily signs which we now call "symptoms"
(for more on the semiotics of the medical symptom, see Baer,
1986). In the medical model, the body is "read" for "symptoms"
under the power of the "medical gaze" (Foucault, 1975). Diagnosis
and treatment generally follow.  Essentially, this is a one-way
process for much of the time, with the body being treated as an
object of practice.

     The medical voice is only one variation of the professional
voice in work with disabled persons, although it should be noted
that many human service professions have adopted the medical
voice in the development of a professional discourse of
assessment, diagnosis and treatment. Other variations of the
professional voice may be found in Table 3.

Table 3  - Variations of the "Professional Voice"

Model           Generative Metaphor           Related to

Deviance        Disability as Violation       Pendulum
                of Norms, Social Pathology

Educational     Disability as a Deficit       Medical Metaphor

Humanitarian    Disability as Misfortune      Feeding

Medical         Disability as Sign of         Tracking Animals
                Sickness

Positivistic    Disability as Object of Study    Physics

Social Service  Disability as a Breakdown        Repair Shop
                of Functioning, Imperfection

Technological   Disability as a Technical        Engineering
                Problem
_________________________________________________________________

The Marginalized Voice

     The voice of disabled persons is often absent, diminished or
marginalized in situations where a disabled person is in the
company of non-disabled persons. In the case of Johnny, in David
Goode's story, the disabled person does not speak at all. His
voice is only faintly heard through the intermediary of the nurse
- "He loves rock and roll...He loves when I take his hand and
clap them to the beat...He loves his red flashlight..." In this
situation we have to trust the nurse's interpretation of Johnny's
voice. But, as David Goode has also shown with his work with
deaf-blind adolescents without language, there are ways to hear
the idiosyncratic voice of the non-verbal person, even when there
is no text, or codified signs, in that voice.

     For less severely disabled persons, there is a greater
chance that the disabled person's voice will be heard. However,
there are still many reasons why this voice may be marginalized.

     First, as indicated, the amount of text production and non-
textual gestures by the disabled person may be limited by the
disability itself. That is, in electronic communications jargon,
the bandwidth of communication may be very narrow, allowing only
faint messages to be sent.

     Second, the disabled person may have a different footing for
communication. That is, in a conversation or presentation, a
disabled person's "alignment, or set, or stance, or posture, or
projected self is somehow at issue" (Goffman, 1981, p. 128).
Differences in the footing of communication can be manifested in
many ways. There may be difficulties with code-switching, in that
the disabled person is unable to change posture, or to modulate
his speaking voice in order to indicate that the frame of the
communication has changed. Because of a lack of mobility, a
disabled person may not be able to move away from a conversation,
and may therefore become an inadvertent "bystander" or
"eavesdropper". Blind persons or persons with a lack of neck
movement may not be able to indicate that they are listening or
not through the use of eye contact. Persons in a wheelchair may
be at a disadvantage in communicating strength through actions of
standing or lifting.

     In getting up, standing is achieved; and with it, not
     only does walking become available, but the distinctive
     forms of seeing, hearing, reaching, grasping, and
     holding, as well as the primary forms of spatiality,
     gesturing, and social deportments...Our posture removes
     us from the ground, thus instituting singular forms of
     human gesturing and other postures: lying down, sinking
     back, giving in, relaxing, resting, as well as forms of
     motion of the body or its members. (Zaner, 1981, pp.
     61-62, emphasis in the original)

     Third, the disabled person's voice may be marginalized by
the reactions of others. The reasons for "miscommunication"
between disabled and non-disabled people have been recently
explored by Coleman and DePaulo (1991). If the encounter with
others, especially those who are not disabled, results in their
reading the disabled body as non-voiced text, then processing
that text through a negative generative metaphor, then the result
will likely be that the voice of the disabled person will not be
heard. What will be heard, instead, will be the voice of the
other, who often speaks for the disabled person, or embarrassed
silence. Or, if disabled persons are heard in spite of the
efforts of non-disabled persons to dominate, then we could refer
to this as the voice of resistance (Scott, 1990).

Conclusions

     This presentation is an illustration of the use of the
concepts of voice and text. The division of different modes of
communication in distinct and clearly defined categories allows
us to move from the analysis of voice in novels, where the
concept was used in its original form by Bahktin, to be used as
an analytical tool which can be easilty applied to the field of
social processes.

     As well, applied to the field of disability, this conceptual
tool permits us to understand longitudinal phenomena such as the
evolution of social attitudes and representations of disability
in the West, or cross cultural material such as the images of
disabled persons in different societies or different periods of
history.

     Finally, transposed to the study of other social groups, the
concepts of voice and text can aid our understanding of the
"factors of communication" which impede or contribute to
integration or marginalization of persons with a disability.

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