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A review and evaluation of research on the deaf-blind from perceptual,

communicative, social and rehabilitative perspectives

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Jerker Rönnberg 1
Erik Borg2
1
Department of Behavioural Sciences,
Linköping University, and The
Swedish Institute for Disability
Research, Linköping and Örebro
Universities; 2Ahlsén Research
Institute, Örebro University, Örebro
Medical Centre Hospital, Sweden
KEY WORDS:
alphabetic codes, deaf-blind, sensory
assessment procedures, sign
acquisition, tactile communication
RECEIVED/ACCEPTED:
June 20, 2000/October 26, 2000
A review and evaluation
of research on the
deaf-blind from
perceptual, communicative,
social and rehabilitative
perspectives
This paper reviews research on deaf-blind individuals, primarily
from behavioral and communicative points of view. Inclusion in the
population of deaf-blind is qualiŽ ed by describing a variety of
subgroups and genetically based syndromes associated with deaf-
blindness. Sensory assessment procedures – based primarily on
residual capacities – are appraised. Consequences for everyday life
are described brie y. Non-sensory, alternative classiŽ catory
schemes and procedures are presented and the results from behavior
modiŽ cation procedures used for correcting maladaptive behaviors
are summarized. Methods for communicating tactilely are described
and evaluated. Attention is also drawn to some suggestions regarding
learning of alphabetic codes and sign acquisition. Finally, sugges-
tions for future research are proposed.
Scand Audiol 2001;30:67– 77

ADDRESS FOR CORRESPONDENCE:

Jerker Rönnberg, Department of
Behavioural Sciences, Linköping
University, SE–581 83 Linköping,
Sweden.
Fax: ‡46 13 282145,
e-mail: JR@ibv.liu.se

Introduction functional assessment procedures are presented.

The aim of this review is to present primarily the
last 10–20 years of behavioral and communica-
tive research on deaf-blind individuals. The
review is selective in the sense that we have
focused on subject categories such as “deaf-
blind”, “Usher” and other genetically relevant
syndromes, combined with additional terms such
as “perceptual”, “cognitive” and “social”. These
concepts and terms have guided us in formal
searches of databases (e.g. Eric, Medline, and
PsychINFO) and in the way that we sought to
uncover research along the continuum from
residual signal processing capacities to commu-
nicative and rehabilitative issues.
The review is organized such that (1), a
characterization of the population and some of
the variety of its genetically determined sub-
groups are presented and (2), some sensory and
ã 2001 Taylor & Francis
The literature on mobility and most work on
technical aids for mobility are excluded since, to
a large extent, they focus on the isolated lack of
vision. The next section (3) is a brief description
of some general problems encountered in every-
day life; (4) alternative functional classiŽ cation
and description of the functions of the deaf-blind
are discussed; (5) intervention and (re)habilita-
tion issues and examples are presented and
evaluated; (6) a section on various approaches
of teaching speech, sign and textured symbols to
the deaf-blind is presented. Finally (7), the paper
is concluded by suggestions for future behavior-
al research in the area.
1. Population
In the United States, where most of the research
68
on deaf-blind subjects has been carried out, the
legal deŽ nition of blindness is visual acuity for
distant vision 20/200 (corresponding to 0.1 in
acuity in Nordic terms) for the better eye. The
deŽ nition of deafness is that the threshold
exceeds 90 dB HL (for the 0.5–2 kHz range).
The prevalence of people being both deaf and
blind in the United States is approximately
10 000. The etiology underlying this dual sensory
condition varies. It is also important to separate
those who were born deaf and blind from those
who have acquired deaf-blindness as adults. They
differ in many respects. The latter group dom-
inates in number, but the former has a larger
variety of additional handicaps, often mental and
motor disorders, and requires substantial and
individually tailored (re)habilitation programs.
The Nordic deŽ nition for being deaf-blind is that
“a person is deaf-blind when (s)he has a severe
degree of a combined loss of vision and hearing
function”. It is further stated that deaf-blind people
have great difŽ culty in obtaining information from
television, radio, newspapers and books, that the
individuals cannot use different kinds of support
and technical visual and hearing aids in a simple
way. Deaf-blindness causes extreme difŽ culties in
school and further education, in work, family and
social situations, as well as in partaking in cultural
activities. Thus, the Nordic deŽ nition (NNH, 1993)
stresses the functional features of seeing and
hearing and acknowledges the fact that an exact
nominal deŽ nition is not generally accepted. Deaf-
blind interpreters are needed for communication
with others and special support facilities are
required in order for the deaf-blind to participate
in education. The number of deaf-blind people in
Sweden (a total population of nine million people)
is estimated to be around 1200; 12% of them have
total loss of vision and hearing, and 50% have
limited vision or hearing (Borg et al., 1999). If the
condition is congenital, for example from mothers
infected with rubella, many of these individuals
appear to be developmentally retarded.
Usher’s syndrome is a genetic disease with
congenital hearing loss or deafness, but with the
cardinal symptom of progressive blindness due
to retinitis pigmentosa (RP). RP gives a chronic
in ammation of the retina, which produces black
patches affecting darkness vision, gives cataracts
and typically results in “tunnel vision” during
the teenage years. The size of the tunnel in
“tunnel vision” typically varies between 5 and
10 degrees of visual angle.
× × ×
Scandinavian Audiology Vol 30 No 2 2001
J Rönnberg and E Borg
Usher’s syndrome has been subdivided into
three types (Kimberling & Möller, 1995). Type I
represents an autosomal recessive disorder
where the individuals are congenitally deaf
(bilaterally), inviting the use of sign language
from the very beginning of their linguistic
development. Also, Type I individuals typically
have a defective balance organ, forcing them to
rely on proprioception for walking. Type II
patients do have access to limited hearing from
birth (non-progressive), which will lead sponta-
neously to a linguistic development based on
speech and speech-based communication
methods. Usher Type III individuals is a
category distinguished from Type II patients by
a rapid progressive decline in hearing and vision.
Very few studies have addressed the psycho-
social implications of the Usher syndrome, but
Miner (1995) has written an illustrative paper
(based on interviews of 39 people with Usher
Type I) on the multiple adaptation problems
associated with progressive RP. Usher indivi-
duals often experience depression in adolescence
(Miner, 1995), and psychosis has been reported
(Vernon, 1969). Also, relatively little attention
has been paid to the psychological sequelae of
deafness and blindness (e.g. Cooper, 1979).
There are also other genetically determined
syndromes such as CHARGE, where reports
suggest that the oculo-auriculo-vertebral spec-
trum is associated with heart malformation,
mental retardation and many other anomalies
(Tellier et al., 1998; VanMeter & Weaver,
1996). Deaf-blindness can also be part of
the deŽ nition of, for example, the Wolfram
syndrome, associated with juvenile diabetes
insipidus, diabetes mellitus, optic atrophy and
sensorineural deafness (e.g. Barrett & Bundey,
1997 for a review) and with the Yemenite deaf-
blind hypopigmentation syndrome (Hennekam
& Gorlin, 1996).
However, there is a variety of other causes for
the majority of deaf-blind individuals in our
society, including sensory losses due to the
ageing of sensory organs, dual sensory dysfunc-
tion due to in icted brain damage and meningitis
affecting an already-blind person, to mention
some common causes.
2. Sensory and functional assess-
ment procedures
Relatively few studies that focus on sensory
Selective review of the deaf-blind
capacities in the deaf-blind have addressed
clinical assessment procedures such as auditory
testing of deaf-blind, developmentally retarded
children. Similarly, testing of brightness sensi-
tivity has also been carried out. This general
approach may seem counterintuitive, as the
children in question are more or less deaf or
blind. However, the point of these studies is to
utilize residual hearing or vision, although
limited, and to attempt to establish whatever
functional consequences there might be, and
what remaining sensory capabilities can be
utilized for compensation and rehabilitation.
In one of the studies (Friedlander et al., 1973),
operant conditioning techniques were employed
in such a way that the children (7.5 years) were
to pull a lever in two ways, one giving sound as a
reinforcer (a piece of music played at 80 dB
SPL), the other giving no sound. The children
were tested both with and without hearing aids,
and with and without tactile vibrator support, to
examine the total time taken to receive a sound
reinforcer, as well as how selective they were in
the choice of responses, i.e. how many times
music was chosen (in percentage of total
choices). The procedure provides usable data
for children who would, in principle, be un-
testable by means of conventional audiological
methods.
In a later study along the same theme of hard-
to-test deaf-blind multihandicapped children, a
scheme for behavioral observations has been
developed where parents and teachers (care-
givers) check systematically for different types
of behavior in relation to different types of
auditory stimuli. This procedure is a useful aid
when studying at which frequencies and inten-
sities the children respond, their most typical
responses, and their most intense responses
(Kersman & Napier, 1982).
Friedlander & Knight (1973) tested 16 re-
tarded, preschool post-rubella children with an
operant procedure using potential preferences
for lights of various intensity, compared to
darkness. The procedure was very similar to that
used by Friedlander et al. (1973). The results
suggest that one can Ž nd a surprisingly high light
sensitivity in so-called “legally blind” children
who, when on their own, had no purposive
behavior repertoire, but engaged only in self-
stimulatory behavior or were extremely hyper-
active. Nevertheless, their operant behaviors
were relatively precise.
69
In a related, but broader attempt at character-
izing the early communication abilities of deaf-
blind individuals with orthopedic impairments,
microtechnology was employed with reinforce-
ment techniques to help the child advance
through a series of levels of early communica-
tion: from getting attention, requesting things,
making choices and, Ž nally, using symbols to
express preferences. Three cases were used to
illustrate the different paths that these indivi-
duals took to reach the Ž nal, early communica-
tion level (Schweigert & Rowland, 1992).
Obviously, operant conditioning techniques
allow us to assess with some precision what
residual sensory capacities there are in deaf-
blind, otherwise untestable children. This type of
information-gathering is of importance for the
assessment of boundary conditions that may
impose restrictions on intervention practices.
In addition, the psychophysical properties of
the cutaneous senses, i.e. phantom sensations
and movement illusions, can be used as a basis
for assessment of sound localization in the deaf-
blind (Borg, 1997). Localization of sound by
means of some vibrator system can be almost as
effective as localization by hearing, given that
head movements are allowed (Richardson,
1982). In addition, work by Borg and colleagues
(1999) has demonstrated that it is possible to
optimize a vibrator system such that detection
with a Ž xed head position can be made. Further
research is needed here before the full clinical
implications of this work can be realized.
Furthermore, reports from successful cochlear
implants in some subjects with deaf-blindness
have been reported several times in recent years.
A patient with Bechet’s disease has beneŽ ted
from implantation (Nucleus 22) (Szilvassy et al.,
1998), and it has been shown in a larger sample
of deaf-blind that an implant is one of the most
worthwhile projects to entertain (Saeed et al.,
1998). Finally certain visual tests, such as the
Fagan test, designed to assess higher-order
visual functions (i.e. a preferential looking
technique), have also been used to catch pre-
viously unnoticed residual visual capacities in
mentally retarded subjects.
Thus, although there exist traditional auditory
and visual assessment procedures, as well as
various neurophysiological and imaging tech-
niques (brain stem audiometry, fMRI and PET),
the agenda of assessing remaining capacities
in the deaf-blind seems to put extraordinary
× × ×
Scandinavian Audiology Vol 30 No 2 2001
70
demands on and stimulate the use of new
innovative assessment procedures.
3. Some everyday consequences of
sensory losses
From a general behavioral and communicative
perspective, the lack of sensory information
concerns a large variety of aspects of life,
particularly those which are beyond arm’s
length. Clinical observation suggests that a
common complaint is that other people do not
greet the deaf-blind individual or inform about
their presence. Telephone signals, doorbell
sounds and trafŽ c situations are other examples
of events where the deaf-blind receive little or no
information. Also, echolocation is not typically
used as a means of detecting objects and moving
in relation to objects in the surroundings. In
addition, the deaf-blind situation is sometimes
made even more difŽ cult by balance problems
(Sauerburger, 1993).
Nevertheless, deaf-blind individuals may have
some residual vision or hearing. The most
important sense may be even a narrow angle of
remaining vision. In some instances, this may be
used for manual communication (see section 6
for a separate treatise of communication modes).
Slight remaining audition may facilitate identi-
Ž cation and localization, and echolocation can
be used even if there is only remaining hearing in
a narrow frequency range, not useful for speech
communication. The kinesthetic and tactile
senses are, however, the most important for the
ability to move. These senses can be supported
by spatial memory representations (Jansson,
1999), which allows the individuals to walk
through areas with which they are familiar.
The ability of blind and deaf-blind people to
detect or avoid objects has been subjected to
considerable research and speculation. The
hypothesis of a special sense, sometimes named
“facial vision”, was Ž nally disproved in 1947 by
Worchel & Dallenbach. They found that this
well-documented ability was due to remaining
vision and hearing, and not to some mystical
other sense. After sufŽ cient blindfolding and
occlusion of the ear canals no ability to avoid
objects remained. However, the cutaneous
senses can be used for detection, localization
and to some extent identiŽ cation of events in the
surroundings. By placing two hands on the table
× × ×
Scandinavian Audiology Vol 30 No 2 2001
J Rönnberg and E Borg
it is not too difŽ cult to detect the direction of the
source of a tapping. Wooden  oors are good
transmitters of vibrations, and within a family
characteristic  oor vibrations may identify the
different family members.
Outdoors, heavy trafŽ c and other loud en-
vironmental sounds can be felt which could be
facilitated with an in ated balloon or umbrella.
Use and training of remaining senses are
important. Particularly for mobility, any remain-
ing vision may be extremely important to the
deaf person. The breeze of the wind, the warmth
of a body, a radiator, sunlight, all give important
environmental information. The proposal that
some deaf-blind people can identify most in-
dividuals by their scent is, however, an exag-
geration (Sauerburger, 1993). In a recent study,
we (Rönnberg et al., submitted) have developed
an interview instrument to assess the relative
importance of different kinds of sensory infor-
mation used for detection and localization of
objects. Preliminary data suggest no self-evident
primacy of the odor sense (Rönnberg et al., sub-
mitted). Technical aids (e.g. vibrator matrices
for “seeing” (Bach-y-Rita, 1972, 1982) or
vibrating elements for transmitting speech, e.g.
Tactaid 7) have been developed as aids for the
deaf or blind. However, it is not clear that they
are optimal for the deaf-blind. Cochlear im-
plants, for example, are more important in most
cases to the deaf-blind for monitoring of the
environment than for communication (Chute &
Nevins, 1995; Miner, 1995).
Thus, it is important to note that although
there may be examples of successful application
of technical aids to the deaf or the blind, the
combined loss puts extraordinary demands on
ingenious engineering, drawing on an analysis of
the everyday ecological demands on information
processing. In this sense, we believe, research is
still in its infancy.
4. Alternative functional classiŽ ca-
tion and description
In one major study (Dunlap, 1985) it was
investigated whether the deaf-blind can be
functionally better classiŽ ed and described on
the basis of certain activity dimensions rather
than hearing and vision status. A large relatively
heterogeneous sample of 251 deaf-blind indivi-
duals was described along 11 activity dimen-
Selective review of the deaf-blind
sions, based on an instrument of 199 skill or
activity statements (Dunlap et al., 1982). A
cluster analysis revealed that all individuals
were best clustered into three groups. Those
activity variables that counted most when dis-
criminating high from intermediate from low
functioning individuals were motor, linguistic,
leisure and social activities (in that order), rather
than the speciŽ c auditory and visual deŽ cits.
ClassiŽ cation of individuals based on multi-
variate discriminant analysis resulted, on aver-
age, in 84% correctly classiŽ ed individuals, i.e.
assigning each individual a membership in one
of the three groups. This information provides an
interesting basis from which to depart when
different (re)habilitation activities are planned,
taking into account other disabling conditions
than vision and hearing loss. It was also obvious
from the study that at least part of the functional
classiŽ cation data could be explained on the
basis of presence or absence of, for example,
cerebral palsy or mental retardation. Further
research must take into account the complex
interactions between several disabling condi-
tions, other skills, and the sensory deŽ cits.
Related to these general assessments of the
deaf-blind individual is also functional intellec-
tual/cognitive assessment. For several reasons,
normal IQ-testing is not appropriate. Operant
techniques presented above seem far-fetched and
would not catch the subtleties of cognition.
Many problems are connected to IQ-assess-
ments. There is no easy way of gathering
normative data for the multiply disabled. Norms
presuppose similar testing conditions and simi-
larities across a number of background variables
among individuals. This is hard to achieve for
the deaf-blind population which is heteroge-
neous both in terms of life-experiences, cogni-
tive consequences due to variations in residual
sensory capacities, as well as their impact on
intellectual and linguistic development, not to
mention the practical problems of test adminis-
tration (Sisson et al., 1987).
Despite the multitude of methodological
problems, there exist some alternative intellec-
tual assessment methods that deserve mention-
ing in this review. First, the Deaf-Blind Program
and Ability Screening Test (Henry & Lyall,
1973), based on Gesell’s developmental theory
(which is actually very much about motor
development), whereas the second instrument,
the Peabody Intellectual Performance Scale
71
(Kiernan & DuBose, 1974) is inspired from
several other sources. Although reliability and
validity estimates have been reported to be
relatively satisfactory, the sample sizes for these
alternatives have been limited (Sisson et al.,
1987). In some instances, typical assessment
procedures developed for the blind or for the
deaf have been adopted, but they obviously lack
the genuine comparability that one seeks.
In addition to these instruments, there is a
body of research on play in handicapped
children, which suggests that the relationships
among the children’s play level and cognitive/
communicative processes can be relatively well
understood. In this respect, Fewell & Rich
(1987) found surprisingly high correlations
among a set of play assessment procedures and
cognitive, communicative and social measures
in 17 deaf-blind children.
Still other methodological solutions include
behavior checklists and observational tech-
niques. Here, a variety of developmental scales
has been created at the different deaf-blind
institutes in the United States. However, there
exist several problems with these behavior
checklists, one of which is quantiŽ cation. Some
of the problems have been overcome by using
the standard American Association on Mental
DeŽ ciency Adaptive Behavior Scale (AAMD-
ABS) with the deaf-blind (Sisson et al., 1987).
Direct observation of behavior has also been
used, with ratings of videotaped sequences along
different dimensions (e.g. Wolf-Schein, 1993).
Thus, the overall recommendation in the area
is to use combinations of standardized tests,
developmental scales and direct observation to
obtain a reasonably balanced overall assessment
of a deaf-blind individual. This is reasonable,
given the various methodological problems
associated with each cognitive/intellectual as-
sessment procedure.
5. (Re)habilitation and intervention
The predominant therapeutic method in the
context of rehabilitation and intervention is the
behavior modiŽ cation set of techniques. These
techniques have in common that they build on
modiŽ cation of behavior through operant con-
ditioning (reinforcing certain behaviors but not
others) and classical conditioning (associating an
event with an aversive consequence). The target
× × ×
Scandinavian Audiology Vol 30 No 2 2001
72
behaviors for modiŽ cation are the various
maladaptive routines and behaviors often dis-
played by the deaf-blind, the inability to acquire
social and self-help skills, as well as the problem
of not having a vocation. The research examples
vary widely (Sisson et al., 1987, for a review).
In one relatively recent study, a behavior
modiŽ cation procedure was used to treat a 25-
year-old, deaf-blind, mentally retarded man for
his self-choking behavior. Water misting of the
subject’s face was used as an aversive condition-
ing technique, combined with a verbal “no”
every time the subject was about to choke. With
this procedure, they succeeded in eliminating his
self-destructive behavior. He was free from self-
choking at an 8-month follow-up test (Peine et
al., 1991).
Acquisition of adequate self-feeding skills in
the deaf-blind have also been addressed by
means of different types of reinforcement
procedures, even if the research in this particular
subarea is relatively sparse (Luiselli, 1993). The
latter has also used reinforcement plus “time-
out” procedures in the treatment of hitting,
punching and scratching in rubella patients
(= children). Other examples of modiŽ cation of
aggressive behaviors include the modiŽ cation of
chronic spitting (Lawrence & Drabman, 1984).
In a further study on two deaf-blind cases, the
use of positive reinforcement procedures (tokens
to buy soda pop) has demonstrated that it is
possible to modify behavior in such a way that
the frequency of social and object-relevant target
behavior increased, whereas the frequency of
self-injury and self-stimulating behaviors de-
creased (van Hasselt et al., 1989). Sisson et al.
(1993) went even further to examine the
potential transfer effects of behavior modiŽ ca-
tion techniques that emphasize differential re-
inforcement of adaptive behaviors. It was shown
that, for example, time on-task and behaviors in
a vocational setting could be improved. Other
domains of research include modiŽ cation of
severe sleeping problems in the multiply dis-
abled (Lancioni et al., 1999) and efforts at
training orientation ability in the deaf-blind
(Lancioni et al., 1990).
Although relatively little attention has been
drawn to the rehabilitative aspects of Usher
patients, in 1978 American Annals of the Deaf
had already published a special issue on these
types of problems (McCay et al., 1978), with a
particular emphasis on the family unit. One of
× × ×
Scandinavian Audiology Vol 30 No 2 2001
J Rönnberg and E Borg
the interesting features of this issue is a proposed
Ž ve-stage model of the disease and the issue of
early vs late detection of the disease, and
associated counseling for vocational careers,
genetic family counseling, etc. It is known that
Usher patients, to a higher degree than congeni-
tally deaf-blind individuals, experience psycho-
logical problems (e.g. Miner, 1995; Vernon,
1969). This can be understood on the grounds
that awareness of an initially relatively intact
function (i.e. vision in this case) – which is
successively deteriorating – is more traumatic,
compared to the case when the individuals were
born without a particular function. Here, the
individual has no “normal” state with which to
compare, hence reducing the psychological
distress involved in losing the function.
Thus, in general it has been suggested that
educational work on learning skills and activities
with deaf-blind children should follow three
stages: (a) a co-active stage, the adult and child
working together as one; (b) the co-operative
stage, the adult performing the activity alongside
the child; and (c) the reactive stage, where the
child can perform the activity independently.
The general curriculum may be split into Ž ve
main areas: (1) communication skills, (2) cog-
nitive development, (3) social and emotional
development, (4) motor and self-care skills and
(5) sensory development (Murdoch, 1986).
6. Linguistic and communicative
aspects
The majority of the research conducted on the
linguistic and communicative abilities of the
deaf-blind concerns the so-called ‘Tadoma’
method. The Tadoma user places his/her hand
on the speaker’s face with the thumb held lightly
against the mouth of the speaker with the other
Ž ngers spread over the neck and jaw. A skilled
Tadoma user can comprehend connected speech
with an accuracy that allows for a relatively easy
 ow of conversation by monitoring lip and jaw
movements, air ow from the mouth and vibra-
tions of the neck (Reed et al., 1992; see Reed,
1995, for an overview). However, none of these
studies addresses cognitive or social conditions
explicitly. Focus is on purely perceptual, lin-
guistic, and to some extent communicative,
variables.
Some of the results are summarized by Reed
Selective review of the deaf-blind
(1995): a Tadoma user’s speech perception can
be compared with the speech perception which is
the case for normal hearing individuals in
conditions where the signal-to-noise ratio is 0–
6 dB. Segmentally, a Tadoma user can perceive
phonemes deŽ ned by manner of articulation
rather than place of articulation. Perceptual cues
for Tadoma users are: larynx vibrations, lip
movements, jaw movements and air puffs/
streams. By means of this method, the deaf-
blind have no apparent problems in developing
appropriate grammatical distinctions (Chomsky,
1986). Intelligibility of the Tadoma user’s
speech production (of sentences) is in the range
of 60–70%, the rate of speech is about half that
for a normal hearing individual, the fundamental
frequency variation is limited, across a sentence
the pause-to-vocalization onset time is extre-
mely high. Generally, speech production of the
deaf-blind is reminiscent of the speech produc-
tion of a congenitally deaf speaker (Monsen,
1978). Naive subjects use Tadoma as effectively
as experienced users with regard to simple
discrimination tasks. These results compare well
with independent data on so-called ‘Tactiling’,
where subjects read speech by means of applying
the hand onto the speaker’s throat/collarbone.
The initial effect on such tactilely supplemented
lip-reading is direct and is not substantially
improved by means of training (cf. Öhngren et
al., 1992; Rönnberg, 1993, 1995; Rönnberg et
al., 1998).
It should be noted that the research on Tadoma
and Tadoma-related perception is based on
speech as the linguistic source of information.
There exist several other means of transferring
linguistic information for the deaf-blind. Here,
further research on the abilities of the deaf-blind
has been carried out in connection with percep-
tion of tactile discriminability of alphabetic
codes. One of the results is that it is relatively
harder to learn to discriminate Braille script
than, for example, the Moon code. Braille is
based on raised dots in one or more of six
positions in a standard Braille cell, while the
Moon-code consists of Ž ve forms which can
represent most of the letters in the alphabet by
presenting the forms in different spatial orienta-
tion. For deaf-blind individuals without experi-
ence of letter-shapes, it was found that a simple
tactile T-code was the most effective and easy
way to learn to communicate. The T-code is
arranged such that a Ž nger can represent three
73
letters. For example, A can be coded on the left
Ž fth Ž ngernail by means of a short tap, B by
means of a longer pressure in the same location,
and C on the same Ž nger by a short tap between
the second and third joints (Thurlow, 1986).
Research on the development of mechanical
Ž nger spelling hands (i.e. an aid for learning the
manual alphabet) for people who are deaf-blind
has also been reported (Jaffe, 1994).
Further linguistic research emphasizes sign
language and how signs can be communicated
tactilely. In one study, tactile iconicity of signs
has been investigated for deaf, blind, normal
hearing and visually impaired individuals. Ico-
nicity refers not only to the physical similarity
between a sign in the hand and an external object
or referent, but is also related to the associative
values that exist between signs and referents.
Some signs have, for different reasons, different
evocative powers with respect to lexical entries.
Iconicity has also proved to be an important
factor with regard to acquisition of sign language
for autistic and for developmentally retarded
children (e.g. GrifŽ th & Robinson, 1980; Kon-
stantareas et al., 1978; Lloyd & Fristoe, 1978). It
has also been shown that there is high agreement
among raters of this sign language variable for
the blind and for the normally sighted. For the
deaf-blind, recommendations are put forward
with respect to the order in which signs should be
taught tactilely (e.g. verbs are higher on tactile
iconicity). There are also indications as to the
developmental sequence in which signs are
acquired (GrifŽ th et al., 1983; GrifŽ th &
Robinson, 1984). What seems to be a relevant
future task for research in this context is a project
which properly scrutinizes the developmental
sequence for the deaf-blind, and which experi-
mentally evaluates different methods of sign
acquisition from the perspective of concept
formation and communicative ability in general.
Interesting Swedish research on turn-taking in
dialogues between deaf-blind persons has re-
cently been published (Mesch, 1998).
Related to this research is the notion of co-
active signing (i.e. taking the hand of the child to
form the sign) which, in fact, can lead to
interactive signing between the deaf-blind and
the tutor (i.e. the sensory impaired person feels
the sign in his hand, and then responds with a
sign; Watkins & Clark, 1991). Here, the material
(i.e. a vocabulary sample, which is disseminated
throughout the United States) is on video and has
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Scandinavian Audiology Vol 30 No 2 2001
74
been constructed with respect to parameters such
as function and meaningfulness of words for
children and families: words found in early
vocabularies of non-disabled children, words
with signs that are concrete and iconic, etc. It is
urged that training with such vocabularies
should stimulate the child to generate new signs
and move from co-active to interactive signing.
Further research along these lines has been
reported recently, where four co-active move-
ment phases are stressed for making possible the
transition to acquisition of language: resonance,
co-active movement, non-representational refer-
ence and deferred imitation (Wheeler & GrifŽ n,
1997).
Still further communication research has
addressed the issue of acquiring linguistic
capacities from the perspective of textured
symbols. In one particular report (Murray-
Branch et al., 1991), two individuals with severe
intellectual (1.5 years of mental age) and dual
sensory impairments were taught textured sym-
bols. A textured symbol is deŽ ned as a paired
association between a texture and an object or
activity. The symbol is easy to discriminate,
permanent and instantaneously discernable
through touch, without unnecessary tactile ex-
ploration (Gibson, 1966). It need not be oriented
in space to be correctly perceived; the texture is
uniform across the surface area. For example,
corrugated cardboard can be associated with
cola, a sponge with an orange, sandpaper with
grapes, etc. An ecological inventory was used to
determine the individual’s expressive needs.
Teaching occurred frequently (a) by establishing
the association between textured symbol and
referent, (b) by using the symbols for requesting
objects and (c) by using the symbols for choice-
making and to establish discrimination between
textures in the context of functional activities.
This research is interesting since it points to the
fact that the individuals could actually use turn-
taking during requesting (handing over a texture
to the intervenor as part of a request), despite the
fact that they were assessed as having an
intelligence only equivalent to the sensory-
motor level. Sensory-motor intelligence should
not, according to traditional Piagetian (1952)
developmental psychology, allow for symbol-
use and communicative turn-taking. According
to Piaget (1952), this ability to decenter and to
take the role of another person should appear
much later in a normal child’s development.
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Scandinavian Audiology Vol 30 No 2 2001
J Rönnberg and E Borg
Thus, the literature offers several interesting
lines of enquiry but so far lacks generality. Case
studies, which seem to be the most common way
of reporting research in the area, by deŽ nition
impose severe restrictions on the Ž ndings ob-
tained; but even with such restrictions, the
research is informative and poses both theore-
tical and practical implications. One theme,
recurring across studies, is the suggestion that,
despite the severe intellectual and sensory
limitations of the deaf-blind population, rela-
tively high competence can be achieved in
different ways. Here, the Tadoma method
represents a challenge for the deaf-blind indivi-
dual with some experience of speech (e.g. early
meningitis) at one end of a continuum of
severity, and textured symbols for the individual
with severe intellectual impairments at the other
end of the continuum. Research on tactile signs
and co-active signing would fall somewhere
between these endpoints. Thus, a pertinent issue
in the context of different communication
methods for the deaf-blind would be the evalua-
tion of relative efŽ cacy among communication
methods.
7. Concluding discussion
From an international perspective, the popula-
tion of deaf-blind has received little research
attention. The research on the deaf-blind can be
characterized by heterogeneity in subject popu-
lation, methodology and scientiŽ c ambition.
This typically manifests itself in case studies,
whether it concerns research on communication
methods or behavior modiŽ cation studies. There
exist larger studies, but then they are typically
descriptive and not causally oriented.
One important general constraint is the type of
deaf-blindness under scrutiny. In principle, one
can separate three classes of deaf-blind indivi-
duals: congenitally deaf-blind (including a vari-
ety of syndromes), Usher (congenitally deaf,
becoming blind) and adventitiously deaf and
blind adults. This is not always acknowledged in
the studies cited, which presumably leads to
important constraints on generalization – in
addition to the other functional dimensions and
disabling conditions characterizing differences
among deaf-blind individuals.
Although methodological limitations seem
pervasive from the perspective of experimental
Selective review of the deaf-blind
and behavioral science, there are still many
interesting leads that can be utilized for further
research. We will mention a few examples,
which build on some of the central issues in
the review.
1. Further research on the potential of tactile
detection and localization of sound sources
should be pursued to the level of clinical
application. Research on the relative impor-
tance of different sensory strategies for
detection and localization of events and
objects has just begun and should be pursued.
The development of techniques that reveal
undiscovered, high-level sensory capacities
seems particularly challenging. The complex-
ity of the interaction between the combined
sensory loss, high-level capacities, interven-
tion technique and technical aids for commu-
nication in a real-life setting is beginning to be
recognized. The research is still very much in
its infancy. Here, we also believe that modern
information technology offers promise for
detection and localization based on other
types of concepts, e.g. in “smart” environ-
ments.
2. Research on the various bases for classi-
Ž cation (e.g. sensory vs activity-based) is
important, as they imply very different
(re)habilitation methods and foci of interven-
tion. Activity-based approaches transcend
some of the methodological problems im-
posed by assessment of perceptual and in-
tellectual capacities. They emphasize instead
the social and adaptive aspects of behavioral
development, and the vital importance of
scrutinizing cognitive and higher-order pre-
requisites that foster genuine dialogue.
3. Related to point 2, we have seen no attempts
at evaluating combinations of behavioral
modiŽ cation methods with different kinds of
communication methods. Such multi-group,
comparative control studies should be encour-
aged, perhaps inspired by activity-based
classiŽ cation systems.
4. The successful turn-taking behavior of se-
verely mentally retarded deaf-blind children,
using textured surfaces, challenges traditional
cognitive theory on the development of
symbolic capacities. A continued “dialogical”
perspective on these capacities can have the
potential of further discovering hidden com-
municative capacities.
75
5. The Tadoma method has received relatively
large research efforts. However, a study that
compared Tadoma with other natural tactile
speech perception methods such as Tactiling
(which essentially represents time-intensity
tactile complements to lip-reading) would be
very informative. It would be of help to
initially assess the rate at which propositions
are speech-read using the two methods, and
also to track longitudinally the learning
curves.
6. Suggestions in the literature that certain
tactile signs should be easier to acquire than
others should be investigated further on the
deaf-blind themselves within a longitudinal
framework – and on a larger sample of
individuals, preferably in comparison with
the natural development of sign acquisition in
the congenitally deaf. This would answer the
important questions raised with respect to the
“natural” unfolding of sign acquisition in
children (cf. Petito & Marentette, 1991). This
would also have implications for intervention
and teaching sign to the deaf-blind.
Acknowledgements
Writing of this paper was supported by a grant to
the Ž rst author from the Swedish Council for
Social Research (95-0023:1B), and by a grant to
the second author from the Swedish Council for
Social Research (94-0053:3C). The helpful
comments by two anonymous reviewers are
gratefully acknowledged.
References
1. Bach-y-Rita P. Brain mechanisms in sensory substitu-
tion. New York: Academic Press, 1972.
2. Bach-y-Rita P. Sensory substitution in rehabilitation.
In: Illis L, Sedgwick M, eds. Rehabilitation of the
neurological patient. Oxford: Blackwell ScientiŽ c
Publications, 1982:361– 83.
3. Barret TG, Bundey SE. Wolfram’s (DIMOAD) syn-
drome. J Med Genet 1997;3:838– 41.
4. Borg E. Cutaneous senses for detection and localization
of environmental sound sources: a review and tutorial.
Scand Audiol 1997;26:195– 206.
5. Borg E, Rönnberg J, Neovius L. Monitoring the
environment: sound localization equipment for deaf-
blind people. Acta Otolaryngol 1999;119:146– 9.
6. Chomsky C. Analytic study of the Tadoma method:
language abilities of three deaf-blind subjects. J Speech
Hear Res 1986;29:332– 47.
× × ×
Scandinavian Audiology Vol 30 No 2 2001
76
7. Chute PM, Nevins J. Cochlea implants in people who
are deaf-blind. J Vis Impairment Blindness 1995:297.
8. Cooper AF. The psychological problems of the deaf
and blind. Scott Med J 1979;24:105– 7.
9. Dunlap WR. A functional classiŽ cation system for the
deaf-blind. Am Ann Deaf 1985;130:236– 43.
10. Dunlap WR, Evelsizer RL, McQuiddy D, Powers AR.
Severely handicapped progress inventory. University,
AL: College of Education, University of Alabama,
1982.
11. Fewell RR, Rich JS. Play assessment for examining
cognitive, communication, and social skills in multi-
handicapped children. J Psychoeduc Assess 1987;2:
107–18.
12. Friedlander BZ, Knight DA. Brightness sensitivity and
preference in deaf-blind retarded children. Am J Ment
DeŽ c 1973;78:323– 30.
13. Friedlander BZ, Silva DA, Knight MS. Selective
responses to auditory and auditory-vibratory stimuli
by severely retarded deaf-blind children. J Aud Res
1973;13:105– 11.
14. Gibson J. The senses considered as perceptual systems.
Boston: Houghton-Mif in, 1966.
15. GrifŽ th P, Robinson JH. A comparative and normative
study of the iconicity of signs rated by three groups.
Am Ann Deaf 1980;126:440– 9.
16. GrifŽ th PL, Robinson JH. Perceptions of tactile and
visual iconicity by blind and sighted groups. J Vis
Impairment Blindness 1984;78:481– 7.
17. GrifŽ th PL, Robinson JH, Panagos JH. Tactile
iconicity: signs rated for use with deaf-blind children.
TASH J 1983;8:26– 38.
18. Hennekam RCM, Gorlin RJ. ConŽ rmation of the
Yemenite (Warburg) deaf-blind hypopigmentation syn-
drome. Am J Med Genet 1996;65:146– 8.
19. Henry V, Lyall JH. Ability screening and program
placement for deaf-blind children and adults. Volta Rev
1973;75:227– 31.
20. Jaffe DL. Evolution of mechanical Ž ngerspelling hands
for people who are deaf-blind. J Rehabil Res Dev 1994;
31:236–44.
21. Jansson G. Spatial orientation and mobility of the
visually impaired. In: Silverstone B, Lang MA,
Rosenthal B, Fraye EE, eds. The Lighthouse handbook
on visual impairment and rehabilitation. New York:
The Lighthouse and Oxford University Press, 1999.
22. Kersman SM, Napier D. Systematic procedures for
eliciting and recording responses to sound stimuli in
deaf-blind multihandicapped children. Volta Rev 1982;
84:226–37.
23. Kiernan DW, DuBose RF. Assessing the cognitive
development of pre-school deaf-blind children. Educ
Visual Handicap 1974;6:103– 5.
24. Kimberling WJ, Möller C. Clinical and molecular
genetics of Usher syndrome. J Am Acad Audiol
1995;6:63– 72.
25. Konstantareas MM, Oxman J, Webster CD. Iconicity:
effects on the acquisition of sign language by autistic
and other severely dysfunctional children. In: Siple P,
ed. Understanding language through sign language
research. New York: Academic Press, 1978:213– 35.
26. Lancioni GE, O’Reilly MF, Basili G. Review of
strategies for treating sleep problems in persons with
severe or profound mental retardation or multiple
handicaps. Am J Ment Retard 1999;104:170– 86.
27. Lancioni, GE, Olivia D, Bartolini T. A blind woman
who is mentally retarded promoting and sharing the
occupational engagement of a dependent deaf-blind
adolescent. Behav Res Treat 1990;5:149– 57.
28. Lawrence JS, Drabman R. Suppression of chronic high-
× × ×
Scandinavian Audiology Vol 30 No 2 2001
J Rönnberg and E Borg
frequency spitting in a multiply handicapped and
mentally retarded adolescent. Child Fam Behav Ther
1984;6:45– 55.
29. Lloyd L, Fristoe M. Transparency of manual signs used
with individuals having severe communication impair-
ment. Paper presented at the 11th Gatlinburg Con-
ference on Research in Mental Retardation, Gatlinburg,
TN, March 8, 1978.
30. Luiselli JK. Training self-feeding skills in children who
are deaf and blind. Behav Modif 1993;17:457– 73.
31. McCay V, Craig WN, Letourneau SN. Am Annal Deaf
1978.
32. Mesch J. Sign Language in tactile form (TeckenspraÊ k i
taktil form). PhD thesis, Stockholm University, 1998.
33. Miner ID. Psychosocial implications of Usher syn-
drome, Type I, throughout the life cycle. J Vis
Impairment Blindness 1995; May/June:287– 96.
34. Monsen RB. Toward measuring how well hearing-
impaired children speak. J Speech Hear Res 1978;
21:197–19.
35. Murdoch H. Helping the deaf-blind child in class. Br J
Spec Educ 1986;13:75– 7.
36. Murray-Branch J, Udavari-Solvner A, Bailey B.
Textured communication systems for individuals with
severe and intellectual and dual sensory impairments.
Language Speech Hearing Serv Schools 1991;22:260–
8.
37. Nordiska nämnden för handikappfraÊ gor (NNH). Döv-
blindas livsvillkor i Norden inför aÊr 2000. Vällingby:
NNH, 1993:8–93.
38. Peine HA, Liu L, Blakelock H, Jenson WR, Osborne
JG. The use of contingent water misting in the
treatment of self-choking. J Behav Ther Exp Psychiatry
1991;22:225– 31.
39. Petito LA, Marentette P F. Babbling in the manual
mode: evidence for the ontogeny of language. Science
1991;251:1493– 6.
40. Piaget J. The origins of intelligence in children. New
York: W. W. Norton, 1952.
41. Potenski DH. Use of black light in training retarded,
multiply handicapped, deaf-blind children. J Vis
Impairment Blindness 1983;77:347– 8.
42. Reed CM, Durlach NI, Delhorne LA. Natural methods
of tactual communication. In Summers IR, ed. Tactile
aids for the hearing impaired. London: Whurr Publish-
ers, 1992:218– 30.
43. Reed CH. Tadoma: an overwiev of research. In: Plant
G, Spens KE, eds. Profound deafness and speech
communication. London: Whurr Publishers Ltd, 1995.
44. Richardson B. Using the skin for purpose of sound
localization. In: Gatehouse RW, ed. Localization of
sound. Amphore Press, 1982:155– 68.
45. Rönnberg, J. Cognitive characteristics of skilled tactil-
ing: the case of GS. Eur J Cogn Psychol 1993;5:19– 33.
46. Rönnberg J. Perceptual compensation in the deaf and
blind: myth or reality? In: Dixon R, Bäckman L, eds.
Compensating for psychological deŽ cits. Hillsdale, NJ:
Lawrence Erlbaum, 1995:251–74.
47. Rönnberg J, Andersson U, Lyxell B, Spens K.
Vibrotactile speechreading support: cognitive prerequi-
sites for training. J Deaf Studies Deaf Educ 1998;3:
143–56.
48. Saeed SR, Ramsden RT, Axden PR. Cochlear im-
plantation in the deaf-blind. Am J Otol 1998;19:774– 7.
49. Sauerburger D. Independence without sight or sound.
Suggestions for practitioners working with deaf-blind
adults. New York: AFB Press, 1993.
50. Schweigert P, Rowland C. Early communication and
microtechnology: instructional sequence and case
Selective review of the deaf-blind
studies of children with severe multiple disabilities.
Argumentative Altern Commun 1992;8:273– 86.
51. Sisson LA, Hersen M, Van Hasselt VB. Improving the
performance of youth with dual sensory impairment –
analyses and social validation of procedures to reduce
maladaptive responding in vocational and leisure
settings. Behav Ther 1993;24:553– 71.
52. Sisson LA, Van Hasselt VB, Hersen M. Psychological
approaches with deaf-blind persons: strategies and
issues in research and treatment. Clin Psychol Rev
1987;7:303– 28.
53. Szilvassy J, Czigner J, Jori J, Toth F, Szilvassy Z,
Mieszkowski JM, Kiss JG. Cochlear implantation of a
Hungarian deaf and blind patient with discharging ears
suffering from Bechet’s disease. J Laryngol Otol 1998;
112:169– 71.
54. Tellier AL, Cormier-Daire V, Abadie V, Amiel J,
Sigaudy S, Bonnet D, de Lonlay-Debeney P, Morris-
seau-Durand MP, Hubert P, Michel JL, Jan D, Dollfus
H, Baumann C, Labrune P, Lacombe D, Philip N,
LeMerrer M, Briard ML, Munnich A, Lyonnet S.
CHARGE syndrome: Report of 47 cases and review.
Am J Genet 1998;76: 402–9.
55. Thurlow WR. Some comparisons of characteristics of
alphabetic codes for deaf-blind. Hum Factors 1986;28:
175–86.
View publication stats
77
56. VanMeter TD, Weaver DD. Oculo-auriculo-vertebral
spectrum and the CHARGE association: clinical
evidence for a common pathogenetic mechanism. Clin
Dysmorphol 1996;5:187– 96.
57. van Hasselt VB, Hersen M, Egan BS, McKelvey JL,
Sisson LA. Increasing social interactions in deaf-blind
severely handicapped young adults. Behav Modif 1989;
13:257–72.
58. Vernon M. Usher’s syndrome: congenital deafness and
progressive loss of vision. J Chronic Dis 1969;22:133–
51.
59. Watkins S, Clark TC. A coactive sign system for
children who are dual-sensory impaired. Am Ann Deaf
1991;136:321– 136.
60. Wheeler L, GrifŽ n HC. A movement-based approach to
language development in children who are deaf-blind.
Am Annals Deaf 1997;142:387– 90.
61. Worchel P, Dallenbach KM. “Facial vision”: perception
obstacles by the deaf-blind. Am J Psychol 1947;60:
502–53.
62. Wolf-Schein EG. Assessing the “untestable” client:
ADLO. Dev Dis Bull 1993;21:53– 70.
63. Öhngren G, Rönnberg J, Lyxell B. Tactiling: a usable
support system for speechreading? Br J Audiol 1992;
26:167–73.
× × ×
Scandinavian Audiology Vol 30 No 2 2001