International Journal of Disability, D evelopm ent and E ducation, Vol. 46, N o. 4, 1999
Interacting with People who have
Severe Communication Problems:
ethical considerations
S TEPH EN
VO N T ETZCHN ER
Institute of Psychology, U niversity of O slo, P.O . Box 1094 Blindern, N -0317 Oslo,
Norway
K A REN JENSEN
Institute of Educa tion, University of Oslo, Oslo, N orway
People who have severe speech and comm unication problems have dif® culties
making themselves ª heardº both in everyday comm unications and society at large. In spite
of the positive results which have followed the development of non-vocal intervention
strategies, this group of people is at risk for being left out of the social comm on and being
alienated. It is important to realise that one cannot do in the technical what one cannot do
in the ethical. U nless both social interaction and intervention with people who have severe
communication im pairments are based on ethical re¯ ection, the m oral standards that are
applied to this group may be lower than for other people. True communicative interaction
depends on the acceptance that the other partner has something of value to comm unicate,
even if the m eans for expressive comm unication are lim ited and the messages are vague and
dif® cult to understand. A m oral requirem ent for autonomy, that is, an equal footing or right
to expression, places an ethical im perative on the more competent comm unication partner
to strive to overcome the asym m etrical relationship and help the disabled person create
authentic m essages. Ethics is awareness based on the re¯ ection on m oral phenomena,
grounded in the norms and values of the society and typically the result of discourse and
co-constructive re¯ ection, in the form of everyday discussions as well as of public philosophical scrutiny. Communication is a vehicle of re¯ ection and discourse may be regarded as
joined re¯ ection. Thus, time for discourse in professional work m ay be a prerequisite for
ethical practice.
AB STRA CT
Ethical issues related to people with disabilities have received growing attention
within the ® elds of m edicine and law . In the m edical literature, there is an emphasis
on questions related to survival and death, and prevention and term ination (A shley
& O ’ R ourke, 1994; D arr, 1991; D ehan, 199 4; Graham, 1994; M atthews, M eier,
& Bartholom e, 1990 ). W ithin law and other professions, questions regarding life
and death have also been central, as well as issues related to life quality and
ISSN 1034-912X (print)/ISSN 1465-346X (online)/99/040453-10
Ó
1999 Taylor & Francis Ltd
454
S. von Tetzchner & K. Jensen
rights to intervention and com pensatory measures to create equal opportunity
in spite of differences in abilitie s (Brown, 1995; Elkins & A nderson, 1992;
Kentsmith, Sallad ay, & M iya, 1986; Leahy & Szymanski, 1995; Syse & Eskeland,
1992).
The present paper is concerned with people who have severe speech and communication problems, and who therefore have dif® culties making themselves
ª heard.º This group is at-risk for being left out of social interactions and thus being
alie nated. U nless both social interaction and intervention with people who have
severe comm unication im pairm ents are based on ethical re¯ ection, the m oral
standards that are applied to comm unication with this group may be lower than
for other people, not only in social interaction and intervention but in all aspects of
life.
Comm unication Im pairm ent
The focus here is people who do not speak or for whom speech is not suf® cient to
ful® l all comm unicative functions, including people with motor im pairm ent, intellectual im pairm ent, and autism. They m ay rely m ainly on their lim ited speech or use
augm entative and alternative com munication systems to supplem ent or replace
speech. Both interacting with and working for this group of people pose problem s
which warran t ethical consideration. These problems are not in the person with a
disability or in the professional, but in their relatio nship. However, as com m unication partners they are not on an equal footingÐ for the disabled partner, the
possibility for expression is reduced, and for the speaking partner the possibility to
receive what the disabled partner intends to com m unicate is negative ly in¯ uenced.
This complem entarity creates a relatio nship with an uneven distrib ution of power.
This asym m etry has im plications for professional practice as well as for com m unication interactions (cf., von Tetzchner & Jensen, 1996; von Tetzchner & Martinsen,
1992).
Ethical Q uestions and Professional Practice
Terms are the tools of re¯ ection. Follow ing Aristotle, Skjervheim (1964) distinguishes between prim ary and secondary ethics, which correspond to Aristotle’ s
term s praxis and poiesis. Praxis are everyday acts; acts which involve interaction with
other hum an beings, both in private and elsewhere. They are not valued according
to the results they produce, but whether they are perform ed according to the cultural
standard, habit, and tradition. These are matters regard ing how one should conduct
one’ s life and relate to those who are near to one, as well as to strangers, including
such m atters as m aking law s and governing a state. Praxis is also a matter of honesty,
of acting truthfully. Poiesis are acts which have a m eaning outside themselves, that
is, are goal directed. They are valued according to their intention as well as the ® nal
result. The right poiesis acts are those that lead to the desired state, what m atters is
being able to perform in a professional sense.
A ccording to Skjervheim (1964) , it is the prim ary m orality or praxis which
Ethical considerations
455
makes secondary morality or poiesis possible, and thus is the basis of professional
practice.
W hat I have termed primary m orality concerns the basic hum an praxis. The
secondary ethics or m orality concerns the question of which goals one should
set, where the m eans to obtain the goals can be found by rational calculatio n. (p. 77)
The fact that secondary m orality depends on prim ary m orality im plies that it is the
praxis of the person that determines the m oral status of the situation and, through
re¯ ection, the ethics and the intervention to be perform ed. However, Skjervheim
(1964) expresses concern that this relatio nship is being overlooked and that poiesis
has become prim ary in education. A rguing again st the utilitaria n tradition following
from John Stuart M ill (see M acIntyre, 1967), he emphasises that one cannot do in
the technical what one cannot do in the ethical. This is illu strated in his view on
developm ental psychology and upbringing:
To act technically m eans to act on the basis of a calculation of what will
happen if one does this or that ¼ Upbringing belongs to the m ore general
hum an praxis , where the attitude behind the acts is m ore im portant than
choosing the right m eans. But where the attitude is decisive, it is not
prim arily a question of psychology, but of ethics. (Skjervheim , 1964 ,
pp. 79± 80)
According to Skjervheim (1964) , goals of ª interventionº (secondary ethics) can only
be achieved if they are based on prim ary m oral acts. A sim ilar view was proposed by
D urkheim at a m uch earlier tim e (M iedema, 1994). However, in discussions of
ethics related to disability from a psychological and educational perspective, the
praxis perspective m ay be dif® cult to detect. Focus is typically on the quality of the
work being done by professionals from a technical perspective, for exam ple, whether
they have selected an appropriate vocabulary or provided the right kind of com m unication aid (e.g., Cockerill, 1994). The discussions differ little from technicalprofessional discussion in general. All professional questions are basically ethical,
but if the focus is solely on technical aspects, ethical dilem mas m ay be hidden
behind questions related to form and execution.
A related distinction is put forw ard by Tranù y (1994) , who distinguishes between
morals and ethics, where m orals concern what is good and bad, and righ t and wrong,
in everyday acts of life. Ethics comprises a m ore explicit, systematic and elaborated
treatm ent of m oral issues. Im plicit in this distinction is the fact that ethics is related
to consciousness, that is, to an awareness which is based on re¯ ection on m oral
phenomena. These phenom ena are part of the livin g of everyday life, as well as of
professional practice. Professional ethics are re¯ ections on the m oral im plications of
professional practice. One may in fact say that ethics in this sense is a bridge
between the two aspects of being a professional person: the professional side with its
technology or poiesos on the one hand, and the everyday-life experiences or praxis on
the other.
456
S. von Tetzchner & K. Jensen
M oral Duty and M oral Consequence
There is thus an im portant distinction between moral duty and the quest for the best
for as m any people as possible. From the point of view of work and profession, it is
easy to argue for the best for all instead of the dignity of the individual (cf., Coyte,
1992). M oreover, because priority is inherent in political decisions far away from the
people they concern, as well as in all kinds of intervention and every-day interactions, it may easily be concluded that one person’ s life is m ore im portant, or worth
givin g priority, than another. For exam ple, a severely com m unication im paired
person may not be able to contribute to the comm on good in such obvious ways as
a teacher, a carpenter, or a doctor. The quality of life of the person with a disability
may be considered to be less than that of people without such im pairm ents. This is,
of course, related to the society’ s and the individual’ s perceptions of a good life.
It m ay here be noted that m oral acts transcend the rights of the individual. Laws
are only necessary precautions again st the lack of m oral and ethical re¯ ection in
society. A cting ethically does not m erely imply following a legal rule, but rather a
hum an duty, where respect for the individual is added to the acknowledgement of the
law . M ost im portant in this is the ability to see a person with a disability as a person
instead of as an expression of im pairm ent. For the professional, transcending the
values rather than the laws of society is the essence of advocacy.
From O bject to Subject
The prim ary re¯ ection on moral acts would be the question of whether the
individual with a disability is treated as a person. In the professional literature within
medicine, education, and psychology, ethical consideratio ns are prim arily related to
the roles of the professionals. People with a disability are m ainly m entioned as
ª patientsº or ª subjectsº of researchÐ really meaning ª objects.º The literatu re rarely
addresses people with a disability as comm unication partners or the fact that basic
hum an values determine the professional decisions, thus disregard ing the fact that
professional acts should not only re¯ ect ª best practiceº but also the general m orals
of the society, including the implicit rules that govern human interaction.
The transformation from object to partner im plies seeing the individual with a
disability as a person, not as a set of sym ptoms of a particular impairm ent, and at
the same tim e accepting the lim itations and differences in ways of functioning that
the im pairm ent im plies. O f partic ular importance is the fact that the focus now is on
the relatio n to a ª stranger.º For the professional, the person with a disability is not
fam ily or another person with whom they belong, a fact that makes a signi® cant
difference in the relatio nship, compared to family and other people who are close to
the person with a disability.
There are two ways in which to obtain a false picture of the situation of a person
with a disability. Firstly, the professional m ay keep distance and see the situation
from a narrow technical-professional perspective. The other way is to focus on one’ s
own feelings. M any professionals’ perception of people with a disability seem s to be
based on the fear they experience when they think of how it would be like to be in
Ethical considerations
457
a similar situation (see e.g., Tomkiewicz, 19 96). This m ay create a false belief of
em pathy and of being able to evaluate what a good life is for that other person. This
false belief increases the probability that the professional’ s own views will be
attribu ted to people with a disability as if they did not have their own life. It is
necessary for the professional to take an outside perspective in order to see both the
person with a disability and him/herself as equal partners in the relatio nship. Both
these ways have in comm on that they do not imply comm unication, the professional
has not listened to the person with a disability or looked for the details in his or her
life world. Only through experience and seeing people with a disability as individuals
who are as different as all others, is it possible to obtain an authentic im pression of
their situation.
Auth entic Com m unication
A truly m oral professional practice depends am ong other things on the acceptance
of the person with a disability’ s expression as authenticÐ as is any other person’ s.
This means that it is perceived as an actual expression of the individual’ s thoughts
(Haberm as, 1983, 1984, 19 87). To acknowledge another person’ s com munication
as authentic also implies an acknowledgement of what the other person says as
havin g value and worth taking into consideration, not only in order to achieve a
particular goal, but to reach a shared understanding. For Haberm as, agre em ent is an
important hypothetical result of the ideal comm unicative relatio nship. Henrik sen
(1997) raises doubts about this and suggests that well-founded disagreement is an
equally likely result. However, he proposes that Haberm asian discourse, with its
acknowledgem ent of the other person’ s com m unication as authentic, m ay contribute to people developing the ability to be em pathic and listen to viewpoints other
than their own, an ability he regard s as decisive for a moral actor in a pluralis tic
society. Henriksen m akes these points in relatio n to present-day m ulticultural
societies in general, but his consideratio ns are equally valid for re¯ ections concerning the standing of people with a disability in society. For people with severe
com munication impairm ents it is not agreement that is vital, but to be ª heardº and
taken seriously by other people. For individuals who use non-vocal alternatives or
supplem ents to speech when expressing them selves, the com m unication form itself
makes it dif® cult to attain this goal.
The comm unication processes of conversations between im paire d and norm ally
speaking people are in several ways substantially different from those taking place in
dialo gues involvin g norm ally speaking or signing partners. In addition to being an
interlocutor who expresses his or her own view s and negotiates topic and m eaning as
in face-to-face interactions where both partners are able to speak norm ally, the
speaking com m unication partner m ay have to be a m essage formulator who artic ulates
the m essage of the speaker with an im pairm ent. T his is done on the basis of single
words and incom plete and fragm ented sentences produced with orthograph ic script
or m anual or graph ic signs, which serve as cues for the partner’ s interpretation (in
addition to gestures and other nonverbal m eans of com m unication). The following
458
S. von Tetzchner & K. Jensen
dialo gue, taken from von Tetzchner and M artinsen (1996, p. 75) serves as an
exam ple.
G eorge (G; aged 7 years 4 months) comm unicates with eye pointing and dependent scanning. His com m unication aid is a book containing 845 PIC signs, drawings, and photograph s. He and his father (F) were going to start playin g, but the
father saw from George’ s expression that something was wrong.
F:
G:
F:
G:
F:
G:
F:
G:
F:
G:
F:
G:
F:
G:
F:
G:
F:
G:
F:
H ere? (Turning pages, asking for each page).
BO DY. (Gaze).
Body. Body? (Turns pages).
Vocalises and gets tense in the body.
H m ? W as it not the body? What was it? Was it this one.
ª N oº (eye m ovem ents).
This one? (Points at CLO TH ES).
ª Y esº (eye m ovem ents).
Clothes. (Indicates domain. The father turns the pages to the clothes pages).
And here?
ª Y esº (eye m ovem ent).
W hat?
SW EATER (gaze).
Is it som ething with the sweater?
ª Y esº (eye m ovem ent).
W hat?
ª Y esº (eye m ovem ent, probably prom pts guessing).
Are the sleeves too long?
ª Y esº (eye m ovem ent).
O h, they are. Yes.
(Time elapsed, 2:0).
O ne im plication of this is that one com munication partner is signi® cantly m ore
adept in adapting than the other. The basic features of the interaction and the
inherent asymm etrical relatio nship that usually exists between speaking and nonspeaking partners (see Collins, 1996; M arkova , 1995), puts the responsibility for
interpretation on the speaking partner (von Tetzchner, 1996). O ne m ay say that the
speaking partner is in som e respects responsible for both sides of co-construction,
which places an ethical dutyÐ in a Kantian senseÐ on him or her to ª speakº for the
other. A t the sam e tim e, the speaking partner’ s double role as interlocutor and
message form ulator necessitates ethical re¯ ection on his or her own contrib ution in
order to ensure authentic com munication on behalf of the com m unicator with a
disability. The speaking partner may fail to ful® l this function, as in this dialogu e
between Joey (J) and a helper (H) from Silverm an, Kates, and M cNaughton (1978,
p. 407):
H : When’ s the holiday?
J: (Points at the com m unication board containing Blissym bols) M O NT H O .
H: Month O? I don’ t get you, Joey.
Ethical considerations
H:
J:
H:
J:
H:
J:
H:
J:
H:
J:
H:
J:
459
Try to form a sentence with it.
(Pounds three tim es on the letter) O. O . O.
Does the m onth begin with an O ?
Yes
October?
Yes
So. A holiday in October. Uh, let’ s see. O h, I know. Thanksgiving
(Canadian).
Do you like Turkey as m uch as I do?
(Points at the board) H.
H ? I don’ t understand. W hat does H have to do with Thanksgiving?
(D oes not answer)
Do you know why we celebrate Thanksgiving? About the pilgrims and Plymouth
Rock and all of that?
(Expresses frustration)
The ability to receive is a prerequisite for sharing, in particular in dialo gues where
one of the partners has lim ited expressive m eans. In such circum stances it m ay be
dif® cult to apprehend what the other person is trying to com municate, sometim es
even to know whether the person is trying to comm unicate anything at all. Still,
although the nonspeaking person in the dialo gue above, Joey, was known to have a
good comprehension of spoken language, the speaking partner, H, did not seem to
acknowledge that Joey had anything valuable to say (Joey m eant Hallow een). H did
not attribu te authenticity to what Joey said. Instead, he took on an educational
roleÐ out of turn, so to speakÐ and thus became a technique-oriented ª school
teacher.º It may be the case that H actually was Joey’ s teacher, but even so, his
answers im plied lack of sensitivity and respect for Joey as a person. Outside the
teacher± student setting, the com municative consequences of the com munication
partner’ s lack of an ethical stance are devastating, and contribute to extend the
asymm etric relationship beyond the comm unicative act itself.
A somewhat similarÐ but different in signi® cant waysÐ exam ple involvin g a
42-year-old wom an with intellectual disability and lim ited comprehension of speech
and m eans of expression is presented by M ù ller and von Tetzchner (1996, p. 264):
One M onday in June 1995, Bodil told her teacher about a ® shing trip she
had been on the day before. She found the PCS sign FISH IN G-TRIP and
glued it into the righ t day (Sunday) in her calendar. She also told the
teacher who had been there and that they had coffee and cakes. This
conversation took m ore than half an hour.
A little later, Bodil and the teacher went to her hom e (sheltered housing)
for video recording a conversation between Bodil and one of the staff
m em bers. Bodil im m ediately pointed to FISH ING -TRIP and began to tell
about the trip. The staff m ember, however, began talkin g about a ® shing
trip they were planning for the follow ing T uesday. He also m entioned
different people and said they were going to have juice and cakes. But while
he stuck to his story, Bodil did not. She was the ® rst to realise that they
460
S. von Tetzchner & K. Jensen
were actually comm unicating about two different trip s. She began to
smile, manually signed FUN and pointed to the Tuesday in the calendar,
indicating that she was looking forward to the trip .
It was im m ediately assumed that Bodil was wrong and that she spoke about a
future event instead of one that had taken place. Considering her intellectual
impairm ent, this was not an unreasonable assum ption. However, instead of disregarding her opinion completely, the staff m ember tried to convince her that she was
wrong. He articulated in speech what she expressed with her graph ic and m anual
signs, took his own dialo gue turns, and even pointed at the board 14 tim es,
something both he and Bodil’ s other com munication partners rarely did. He becam e
in fact an exemplary com munication partner. The pointing indicates that he took the
matter seriously and wanted to convince her that she was wrong, and thereby
accepted the authenticity of her expressionÐ as she had acknowledged his. He
disagreedÐ as he m igh t have done with any com munication partner, but he regard ed
her point of view as authentic and worth arguing about. In spite of the inequality in
language competence, he managed to forget his position and did not reduce the
issue to a m atter of paternalistic care.
A lso in this example from Soro, Basil, and von Tetzchner (1992) a speaking
participant shows respect for the m essage produced by an aided speaker:
A girl and a boy, both using comm unication aids and a few manual signs,
were sitting together with their teacher, who was functioning as a sort of
m ediator between them . The girl was listing the children she wanted for
her birth day, but did not m ention the boy, who eagerly indicated that he
wanted to com e. The teacher relayed the request. The girl indicated N O
and the teacher relayed this message to the boy without interfering, that is,
without attem pting to m ake her change her answer.
It happens that conversation partners fail to ª listenº or take what is to be com m unicated for granted, attrib uting lim ited or incorrect content to the expressions of
people with a disability. O ne reason m ay be that the com m unication partners do not
have their attention on the sam e focus, that is, have different contextual fram es, as
in this exam ple from Krivo hlavy (1996) :
One term inally ill wom an m anaged to whisper water, but when a glass of
water was brought to her, she did not want to drink. She was asked
whether she had said water and con® rmed this. Only when the com m unication partner went to her side in order to follow her gaze did he understand the m eaning of the utterance: she was looking at a ¯ ower. W hen the
water in the glass was poured into the vase of the ¯ ower, she smiled her
acknowledgem ent.
In order to understand the wom an, it was necessaryÐ as in all true com m unicationÐ to take her perspective.
A m ore dif® cult problem of attrib uting authenticity is when a profoundly im paired
person is without any evident com municative expressions. Accepting the person
Ethical considerations
461
implies the attribu tion of meaning and decision to all his or her acts while at the
sam e tim e acknowledging the person’ s inability to express m eaning in an ordinary
manner, and som etim es not even in an unconventional way. This creates a serious
danger of unwarily attrib uting wishes and ideas that the person does not actually
have, and thus a need for the norm ally comm unicating partner to see him /herself
and the possible in¯ uence she/he may have on the interpretation of the person with
a disability’ s behavio ur.
It m ay be noted, however, that conscious overinterpretation is a different m atter, as
applied in the intervention method ª structured overinterpretationº (von Tetzchner,
1996). In the use of this strategy, interventionist re¯ ection is implied. An ethical
stance requires that one is fully aware of the im plicatio ns of what one is doingÐ and
of the problem s of not taking persons with a disability seriously.
Re¯ ection and Discourse
The ® nal point goes back to ethical re¯ ection. M orals, even if applied to the
individual, are basically social, re¯ ecting the norm s and values of the society. M oral
developm ent is not conceivab le outside a comm unity of som e kind. It is, however,
not enough to follow the habits and traditions of the society, it is these that the
individual has to take a stand on and transcend. It is possible to re¯ ect on ethics in
solitude, but ethics can only be cultivated in a social room and through discourse.
Com m unication is a vehicle of re¯ ection and discourse joined to re¯ ection (Jensen,
1992). To ensure ethical intervention, discourse should be facilitated between
variou s professionals, fam ily, and other signi® cant persons in the com munication
impaired individual’Â s life. Com munication with severely and profoundly com m unication im paired people, even if their com municative m eans are lim ited, must also be
part of this process.
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