Vol.2, No.5, 418-428 (2010)
Copyright © 2010 SciRes. http://www.scirp.org/journal/HEALTH/
Openly accessible at
Mapping out the social experience of cancer patients
with facial disfigurement
Alessandro Bonanno*, Jin Young Choi
Department of Sociology Sam Houston State University, Huntsville, USA; *Corresponding Author: SOC_AAB@SHSU.EDU
Received 25 November 2009; revised 14 January 2010; accepted 16 January 2010.
This article contributes to the limited literature
on the social consequences of cancer gener-
ated facial disfigurement by reporting the result
of an exploratory analysis of interaction be-
tween facially disfigured cancer patients and
strangers and acquaintances (secondary groups).
Secondary groups are those in which member-
ship occurs due to performance of formal and/or
non-intimate roles. Interaction is studied as it
takes place in different social settings. Indivi-
duals who are affected by cancer of the head
and neck region can now expect to survive for
many years after the cancer is detected and
later surgically removed. Because of surgery,
these survivors live the rest of their lives with
facial disfigurement and are stigmatized and
socially excluded. It follows that a new and so-
cially relevant situation has emerged: as medi-
cine develops and allows more patients to sur-
vive, it forces them to spend significant portions
of their lives dealing with the stigma associated
with facial disfigurement. Research on social
issues pertaining to facially disfigured cancer
patients remains sparse. Limited knowledge has
been produced on the “social context” within
which interaction between the disfigured and
relevant social groups takes place. To date most
research has focused on the individual and
his/her ability to adapt to the condition of fa-
cially disfigured. To address this scientific gap
and document the manner through which the
interaction process is socially created and
evolves, interviews with fourteen facially dis-
figured cancer patients were carried out. These
interviews were designed to reconstruct the
interaction experiences of these individuals in
different social contexts. Data were analyzed
through the qualitative approach of grounded
theory. Results indicate that patients can be di-
vided into two groups: Occasionally Comfort-
able Patients and Always Comfortable Patients.
Occasionally comfortable patients are individu-
als who experience different levels of comfort in
interaction. In some situations they do not feel
stigmatized, but other interactions constitute the
contexts within which this discomfort emerges.
Discomfort in interaction was employed as an
indicator of stigmatization. Interacting groups
were divided into small and large. Intrusion
(unsolicited attention to patients) in interaction
in large and small groups always generates
uncomfortable situations. Sympathy (unsolic-
ited comments and/or actions in support of pa-
tients) is associated with comfort in interaction
in small groups and produces varying patterns
in the case of large groups. Benign neglect (a
situation in which interacting individuals do not
pay particular attention to patients) produces
comfort in interaction within large groups and
varying outcomes in the case of small groups.
Always comfortable patients are those who do
not experience discomfort in interaction regard-
less of the size and characteristics of the inter-
acting group. The article concludes by stressing
that facially disfigured cancer patients should
be prepared to face different interaction pat-
terns. Simultaneously, efforts should be made to
educate patients and the general public about
these interaction patterns.
Keywords: Facial Disfigurement; Cancer; Stigma;
Social Interaction
The objective of this article is to illustrate the results of
an exploratory analysis on the patterns of social interac-
tion experienced by individuals who are facially disfig-
ured because of cancer. Individuals who are affected by
cancer can expect to be cured and/or survive for a num-
ber of years after the cancer is detected and later surgi-
cally removed [1,2]. This is also the case of patients with
head and neck cancer who remained facially disfigured
A. Bonanno et al. / HEALTH 2 (2010) 418-428
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because of it [3,4]. In this particular instance, surgical
intervention signifies the removal of portions of the face
that are affected by the malignancy. Additional conse-
quences are possible and they often include the collapse
of parts of the face that may not be directly touched by
surgical intervention [5]. Accordingly, patients’ facial
disfigurement may involve a larger portion of the face
than that originally affected by cancer [6]. Surgical pro-
cedures to correct these alterations are common along
with the availability of increasingly sophisticated pros-
theses [3]. Yet, results often do not rectify notable dif-
ferences from the “normal” face. Accordingly survivors
typically live the rest of their lives with major alterations
of their normal facial appearance.
In contemporary society, the face represents one of the
most notable items employed to determine identity and
participate in social interaction [7-9]. It is a central ele-
ment of communication [10,11], an item employed to
attribute both “normality” and ownership of socially
desirable characteristics [12-16] and a feature that de-
fines interaction as individuals endowed with a pleasant
face are better treated than other and less attractive
members of society [17,18]. Owing to the social impor-
tance of the face, facially disfigured individuals are
stigmatized and experience difficulties when interacting
with other segments of society [11,12,14-16,19-21]. It
follows that a new and socially relevant situation has
emerged. As medicine develops and allows more pa-
tients to survive, it also makes them spend significant
portions of their lives dealing with the stigma associated
with facial disfigurement.
Research on social issues pertaining to facially disfig-
ured cancer patients remains sparse and attracts even less
attention than the already limited research associated
with other forms of acquired and congenital disfigure-
ment [10,15,22-24]. Additionally, analytical problems
have limited the accuracy of available research results
[25]. In this context, limited knowledge has been pro-
duced on the “social context” within which interaction
between the disfigured and relevant social groups takes
place [21,25]. Throught this paper we would like to con-
tribute to this limited literature. In particular, this article
offers the results on an exploratory analysis on patterns
of interaction between disfigured patients and members
of secondary groups (acquaintances and strangers) as
interaction occurs in different social settings. Interaction
with other groups, such as family members and friends
(primary groups), is important. However, in this work
we focus exclusively on interaction between patients and
members of secondary groups. The study of the interac-
tion with other groups remains a relevant topic to be
further explored.
Methodologically, the study consists of in-depth inter-
views with fourteen cancer patients who underwent sur-
gery to treat head and neck cancer and remained facially
disfigured because of it. Patients were enrolled following
a protocol that excluded minors and those who could not
express themselves in English. Given the relative limited
size of this patient population, the adoption of a qualita-
tive approach was recommended. A semi-structured
questionnaire was employed and data were analyzed
employing Grounded Theory [26]. Grounded theory is a
technique of qualitative data analysis that allows the
identification of patterns directly from the data. Rather
than hypothesis verification (pre-existing ideas to be
verified in reality), grounded theory allows the devel-
opment of categories (variables) and their relationships
(patterns) that are not established a priori. These catego-
ries and patterns emerge directly from the data and can
be always traced back to the data themselves. Because
there are no pre-conceived hypotheses to be tested, this
technique is particularly appropriate for exploratory
analyses [26]. This is a qualitative study as it is aimed at
illustrating the manner though which the patterns of in-
teraction unfold. It explains the “how” these patterns
manifest themselves and develop rather than how often
they occur in reality. It also stresses the process through
which the interaction is created and grows rather than its
outcomes. Given the small size of the sample, this ap-
proach has been considered more appropriate than quan-
titative statistical analysis.
The statements concerning the result have been veri-
fied through established data verification techniques. In
particular the techniques of “saturation” and “negative
cases” were employed. In the case of saturation, the
creation of categories is verified by searching for possi-
ble instances in which data cannot be explained by the
category in question. When no more instances to be ex-
plained by the category in question are found in the data,
the category is said to be saturated and therefore verified.
In the instance of negative cases, categories are com-
pared with situations in which their attributes are contra-
dicted by evidence. As categories that have negative
cases are eliminated, the remaining ones are considered
verified. These techniques were applied to the construc-
tion of the categories and patterns employed in this arti-
The objective of the article is to identify patterns of
interaction between facially disfigured individuals and
members of secondary groups. Secondary groups were
defined as non-intimate, formal groups consisting of
acquaintance and strangers. Results indicate that facial
disfigured patients feel stigmatized when interacting
within small and large groups and the interacting coun-
terpart(s) shows “intrusion” (i.e., unrequested attention
to patients including unwanted questions, remarks and
stares). Patients respond in varying manner when “sym-
pathy” (i.e., unsolicited comments and/or actions show-
ing support) and “benign neglect” (i.e., no particular
attention paid to patients) characterized the interaction. A
group of patients that do not feel stigmatized during
various types of interaction was indentified. The paper
A. Bonanno et al. / HEALTH 2 (2010) 418-428
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concludes by stressing the importance of studying stig-
matization through a sociological approach and by
pointing out that cancer survivors and the general public
alike could benefit from education about these interac-
tion outcomes.
Stigma is a mark of disgrace attached to people who are
considered different. As indicated by Goffman [13], dif-
ference is socially constructed and is the outcome of
discrepancies between an individual virtual social iden-
tity (expectations about what that individual ought to be)
and his/her actual social identity (the attributes he/she
actually posses) [13]. When the actual social identity is
perceived as departing from normality, the individual is
“reduced in our minds from a whole and usual person to
a tainted, discounted one. “Such an attribute is a stigma”
[13]. Stigma is attached to an individual’s feature “that is
deeply discrediting” and that separates that person from
the group of the normals. However, its actual genesis
should not be linked to attributes but, rather, to the in-
teraction between the stigmatized person and other
members of society. “A language of relationships, not
attributes, is really needed” Goffman states [13]. Stigma
is generated by the existence of a number of blemishes.
There are those of individual character such as homo-
sexuality, dishonesty, imprisonment, radical political
behavior, and addiction. There are those of tribal stigma
that are related to a person’s religion, ethnicity or race.
And there are those of “abominations of the body” that
refer to physical abnormalities. Goffman includes facial
disfigurement in this category [13].
Following the seminal work of Erving Goffman [13],
social stigma has been widely studied and this produc-
tion includes works such as those on stigma generated
from diseases (i.e., cancer and AIDS) [27], physical dis-
abilities [28,29], and mental health1 [30,31].
In spite of this wealth of contributions, the stigma
caused by facial disfigurement has been the subject of
only a relatively small number of works [10,15,21,22,
24,32]. These analyses stressed the social importance of
the face and the problems that affect those who display
visible facial blemishes [12-16]. In a society in which
individuals are fully clothed for virtually all of their so-
cial activities, the face represents one of the most notable
physical attributes and a significant source of social in-
formation prior to, and during, social interaction [8,9,
30,33]. Accordingly, people possessing an attractive
face2 are not only considered physically pleasing3, but
they are often viewed as endowed with intellectual and
emotional characteristics that are unrelated to their
physical appearance [10,11,36]. Intelligence, kindness,
likableness, and high morality are frequently associated
with an attractive appearance. Unsurprisingly, these in-
dividuals are also better treated by others than less at-
tractive members of society [17,18]. Lacking some of
these physical attributes, facially disfigured individuals
commonly engender negative responses by other mem-
bers of society. Stigmatized and socially excluded, their
ability to interact is often distorted and interaction is the
source of problems including verbal and physical abuse,
ridicule, hostile behavior, and isolation [10,12,37].
The literature identifies two types of facial disfigure-
ment: congenital and acquired. Acquired disfigurement
received less scientific attention than the already limited
literature on congenital disfigurement [24]. Acquired
disfigurement is further divided into trauma- and can-
cer-generated disfigurement. Research demonstrates that
individuals with acquired facial disfigurement suffer
psycho-social consequences that are different and, at
least to some degree, more pronounced than those ex-
perienced by individuals with congenital disfigurement
[18,24]. Among individuals with acquire facial disfig-
urement, cancer patients4 experience less social and
psychological problems than individuals who have been
disfigured because of trauma [38]. However, cancer pa-
tients’ “fear of dying is immense” [39]. And this situa-
tion affects these individuals and their family members’
perception of disfigurement [40]. In this context, patients
are more preoccupied with the evolution of their cancer
than with the social consequences of the scars that the
disease left on their faces [24,40]. As this fear of dying
diminishes, however, the process of dealing with the
deformity affects both patients and family members
2Early research on physical appearance paid more attention to the face
than the rest of the body. It was stressed that the face was the most
visible part of the body, its stability of appearance was grater than
body appearance both in terms of the individual’s lifespan and devel-
opmental stages, and physical attractiveness was predominantly deter-
mined by the face. Recent research, however, while still emphasizing
the face [4], has underscored the growing importance of the body in
the determination of beauty and attractiveness [9,20].
3“…Beauty is perceived as residing principally in the face.” [33].
4While the social perception of cancer has changed in recent decades,
this disease engenders a wide variety of attitudes and responses tha
differentiate it from other pathological situations [46]. Often, these
attitudes and responses are stigmatizing [47,48]. However, differences
have been recorded between reactions to forms of cancer that are per-
ceived as “uncontrollable”—such as breast cancer – and those that are
erceived as “controllable”—such as lung cancer due to smoking.
Because the latter are seen as deriving from the patient’s voluntary
actions, more stigmatizing reactions are expected [49].
1This abundant literature has also underscored important limits of the
use of the concept of stigma. For instance, stigma has been studied
with a strong individualistic focus, it is often employed by people who
do not belong to stigmatized groups, there is no consensus on a com-
mon definition, and the existence of these multiple definitions allow
the charge that this concept is too inclusive to be actually informative
([28] Cahill and Eggleston, 1995:682; [34] Link and Phelan, 2001:
365-366). There are also uncertainties about its manifestations as “felt”
stigma—the individual’s “shame” associated with the blemish—is
much more common than the rare “enacted” stigma—or the existence
of overt episodes of discrimination ([35] Jacobi, 1994:269).
A. Bonanno et al. / HEALTH 2 (2010) 418-428
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[39,40]. The association of cancer and disfigurement is
persistent. In effect, therapy almost inevitably mandates
surgical removal of cancer-affected parts of the face
making it an undesirable consequence of successful
medical intervention [20,41,42].
Among the limits of this otherwise important litera-
ture is the lack of attention paid to the social context
within which the consequences of facially disfigurement
emerge [12,21,25,32]. Emphasis is placed on the indi-
vidual, his/her characteristics, and efforts to adapt to
his/her condition of disfigured [4,39]. This posture
downplays “the everyday experience of the disfigured
population in social settings” [17,21,25,32,37,43]. In this
context, the “interaction process” through which disfig-
urement is experienced is viewed almost exclusively in
terms of the significance of individual behavior as a pre-
dictor of social outcomes [19,32,43]. This is also the
case when other social actorssuch as partnersare
studied [37,44]. In particular, limited attention is paid to
the fact that disfigurement is socially constructed and
generated through processes of interaction that involve
multiple actors and take different forms according to the
settings in which they unfold [21].
The individual remains the research focus also in
studies on the relationship between cancer-generated
facial disfigurement and stigmatization [45]. Indeed,
research on stigma has been “decidedly individualistic in
focus” [34]. Accordingly, the ways in which interaction
between the facially disfigured and the “normals” un-
folds in different realms of society has been understud-
ied. As Thompson and Kent put it “Most studies have
examined the ‘view form the inside,” with little work
[carried out] on the social and the ‘view form the out-
side’” [25].
In this literature, the interaction of disfigured indi-
viduals within primary groups has been privileged over
than within secondary groups [15,16,45]. In particular,
the spheres of the “family” and “caregivers” are por-
trayed as social settings in which the disfigured find
more comfortable terms of interaction. The family is
seen both as a “safer place” in which the disfigured feel
protected and supported and the institution that provides
them with alternative messages than the stigmatizing
ones coming from society and its strangers [15,16]. In-
teraction with caregivers, and in particular those between
surgeon, social workers and disfigured patients, is also
viewed as comfortable [15]. To be sure, race-, ethnicity-,
and culture-based forms of discrimination in the hospital
are documented [16] and improvement in the manner in
which health care professionals deal with those who are
facially disfigured is frequently indentified as a primary
programmatic objective. Nevertheless, the hospital is
often identified as one of the settings in which patients
achieve comfort in interaction [15].
The same literature indentifies secondary groups in
terms of “strangers” who populate “public places” where
they not only intrude into the lives of the facially de-
formed through “staring, remarks, and questions, or ob-
vious eye avoidance [16], but also negate that “civil in-
attention” normally granted to other members of society
[16]. These groups constitute the “popular mind” [16]
that produces “generalized prejudice” [16]. The social
settings where secondary groups exist are seen as gener-
ating stigmatization as people deal “differently with
those who have undergone facial surgery” [15] and en-
gender “fear” to the disfigured [15]. Ultimately, society
is the source of generalized stigmatization through
widespread stereotyping that allows the “…unsightly
face [to be] utilized as a visible symbol or a personifica-
tion of evil, disease, criminality, or mental deficiency”
[16]. This process of stigmatization is so pervasive that it
is viewed as if it is conducted uniformly throughout so-
ciety regardless of actors and settings [15,16]. While
evidence indicates that society is the primary source of
stigmatization [10,20,24,37,39], the manner thought
which facially deformed cancer patients experience
stigmatization in different spheres of society is under-
studied [45]. van Doorne and his associates [39], share
the view that members of the immediate family provide
strong support to cancer patients who are facially disfig-
ured. They also stress that strangers are consistently the
source of stigmatization. In their view, further investiga-
tion is needed to ascertain the manner in which non-
immediate family members and acquaintances react to
facially disfigured patients.
In essence, the study of stigmatization of the facially
disfigured is couched in approaches that stress the ac-
tions and adaptability of the individual, on the one hand,
and the homogenous dimension through which stigmati-
zation is created in society, on the other. In this context,
the manner in which facially disfigured cancer patients
experience stigmatization while interacting with secon-
dary groups in different spheres of society has not been
adequately explored. This literature does not differenti-
ate between the many settings that form the sphere of
society and that are the contexts in which interaction
with secondary groups takes place [45]. Owing this gap
in the literature, the objective of this paper is to provide
an exploratory analysis of the patterns of social interac-
tion experienced by individuals who are facially disfig-
ured because of cancer as they interact with members of
secondary groups.
This exploratory research employed in-depth interviews
with fourteen individuals who were facially disfigured
because of head and neck cancer. A purposive sample
was selected from a list of patients who were registered
at MD Anderson Cancer Center in Houston, Texas. This
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particular group of patients had cancer of the upper face
area and specifically orbital and periorbital cancer. Po-
tential participants were identified following the re-
cruitment guidelines. They were adult patients (18 years
old and older), who were diagnosed with various forms
of head and neck cancer, underwent facial surgery to
remove the malignancy and, in the process, acquired
observable changes in their facial appearance. Addition-
ally, they were required to be able to communicate in a
meaningful manner with investigators.
In-depth individual interviews were conducted by
phone between January 2008 and April 2009. Twenty
potential participants were contacted. Three of them
could not participate for scheduling problems and three
refused to be part of the project. Finally, a total of eight
men and six women were interviewed. The median age
of these patients was 66 years and the youngest patient
was 31 and the oldest 81. At the time of the interview,
the post-surgical period ranged from ten months to thirty
five years and the median was five years. Some patients
underwent additional reconstructive and plastic surgical
procedures. While the extent of disfigurement varied, all
of the patients were left with significant alterations in
their facial appearance.
A semi-structured questionnaire was employed. Ques-
tions covered topics such as the individual’s demo-
graphic and socio-economic characteristics; experience
with cancer and treatment; perceived attitudes and ac-
tions of others; and interaction in various events and
places. Patients were interviewed by a single research
team member. This procedure was adopted to assure
consistency in the interview procedure. With the pa-
tient’s consent, interviews were audio recorded and
written notes were also taken.
The transcribed texts were analyzed through grounded
theory methodology [26,50]. This methodology permits
the identification of conceptual categories and patterns
among them from the text. Categories and patterns were
verified through the techniques of “saturation” and “neg-
ative cases.” Secondary groups were defined as noninti-
mate, formal groups formed by strangers and acquaint-
ances. Following data analysis, salient interaction pat-
terns were identified and patients were divided into those
feeling comfortable, uncomfortable or having varied or
mixed feelings. The feeling of uncomfortable was con-
sidered an indicator of the patient being stigmatized ei-
ther in terms of felt stigmatization or enacted stigmatiza-
tion. Felt stigmatization refers to the perception of the
patient. Enacted stigmatization refers to overt actions of
stigmatization. Interaction patters were identified and
divided into three categories. Intrusion indicates that
people pay unsolicited attention to patients, ask un-
wanted questions, make unwelcome remarks and stare. It
also indicates that they make their unspoken curiosity
felt. Sympathy refers to unsolicited comments and/or
actions showing support to patients and the desire to be
of assistance. Benign neglect denotes a situation in
which interacting individuals did not pay particular at-
tention to patients. Size of interacting group was divided
into small and large. These concepts indicate that the
secondary group in which interaction took place was
either large or small. The actual size of the group was
determined through patients’ own descriptions of the
Following grounded theory analysis of the data, two
groups of patients were identified: Occasionally Com-
fortable Patients (N = 10) and Always Comfortable Pa-
tients (N = 4). Patterns of interaction with Occasionally
Comfortable Patients are visually synthesized in Figure
1 and basic descriptive statistics for this group are pre-
sented in Table 1. Basic descriptive statistics for Always
Comfortable Patients are summarized in Table 2.
Over 71 percent of the patients studies suffer from
some forms of stigmatization. In relative terms, men
suffer from stigmatization slightly more than women
(75% versus 66.7%). Yet, women over 55 years of age
experience stigmatization in slightly higher terms that
men of the same age group. Intrusion is the source of
stigmatization for the majority of patients and impacts
men and women equally. Older men experience stigma-
tization from sympathy more than women of the same
Size of Group
Small Large
Intrusion Uncomfortable Uncomfortable
Sympathy Comfortable Comfortable
Types of Interaction Postures
Uncomfortable Comfortable
Figure 1. Patient-secondary group interaction by size of group
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and types of responses to disfigurement for Occasionally
Comfortable Patients.
Table 1. Basic characteristics and patterns of interaction of
Occasionally Comfortable Patients, N = 10 (total patients
studied N = 14).
Age and
Men > 55
Men < 55
Women > 55
Women < 55
Men > 55
66.7 %
Men < 55
33.3 %
Women > 55
Women < 55
Men > 55
Men < 55
Women > 55
Women < 55
Benign Ne-
Men > 55
Men < 55
Women > 55
Women < 55
Table 2. Basic characteristics of Always Comfortable Patients,
N = 4 (total patients studied N = 14).
Age and
Men > 55
Women > 55
age group while older women experience benign neglect
relatively more than men. Due to the limited size of the
sample and the qualitative design, these statistics are
reported only as an illustration of possible quantitative
trends. More pertinent findings are presented below in
the discussion of the qualitative analysis.
4.1. Occasionally Comfortable Patients
Occasionally comfortable patients are individuals who
experience different levels of comfort in interaction. In
some situations they do not feel stigmatized, but other
interactions constitute the contexts within which this
discomfort emerges. Intrusion in interaction in large and
small groups always generates uncomfortable outcomes.
Here patients are stigmatized. Sympathy is associated
with comfort in interaction in small groups and produces
varying patterns in the case of large groups. Benign ne-
glect produces comfort in interaction within large groups
and varying patterns in the case of small groups.
4.1.1. Intrusion
This is a situation in which patients feel uncomfortable
interacting within small and large groups alike. Members
of interacting groups grant disfigured individuals the
particular status of “different” and proceed to construct
an interaction in which this condition is reinforced. Pa-
tients are noted because their different appearance. They
are drawn in interaction patterns in which their status of
different is constructed and reinforced through unwanted
attention. People’s questions, stares, remarks constitute
elements that build a view of disfigurement that is stig-
matizing. While varying, patients’ responses are charac-
terized by dissatisfaction with the interaction. Interaction
in large and small groups alike provides the terrain for
the development of this constructed stigmatization. Small Groups
Joy provides an account of this type of interaction with
small groups. She says:
“Sometimes I notice that people…can tell that this
side of my face does not make the same movements
[than the other side]. They are probably aware that there
is something strange about that woman…The first time
that I took my six year old to dancingmy six year old
granddaughter, she dances every Wednesday and then
she is at church afterwards. The children have special
things going on after dancing at the church… My
daughter works a lot and so that Wednesday is mine. I
take them and do all of that kind of thing. Well, the first
few times when I was taking her to dancing, I sit and
wait… can’t go off and leave her, wait in the room with
the other parents and I could tell that some of the moth-
ers were looking at me strangely, not in a mean way or
anything like that but more curious, like there’s some-
thing strange about that woman. What could it be? And
generally, I have found that if I feel like somebody is
making me feel uncomfortable… I’ll go ahead and say
She adds:
“I went to a wedding shower for one of my daughter’s
friends who I didn’t know very well and there were a lot
of young women there that I did not know well… and I
was uncomfortable there. I felt like the majority of them
probably did not know that I had this problem [cancer
generated facial disfigurement] and I’m sure they were
wondering… that was an uncomfortable day…. I didn’t
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really enjoy that.” Large Groups
Arthur provides an instance of the interaction between
patients and large secondary group. He says:
“I feel like everybody’s always staring at me. It is
strangers. [I have negative feelings] when dealing with
strangers. Probably the worse is in restaurants. Because
you are sitting there for a long time and the people
around you are all eventually looking at you or you feel
they are. [It is also the same] when you walk past some-
body in a store or on the street or something… They
stare at you… It is very crude and insensitive and it
makes me skittish towards other people… it makes me
feel very uncomfortable…I don’t go out very much
Janet adds:
“When people keep staring at me and pretend they are
not looking at me… It bothers me. Most adultsthey
will look at me. They all notice, I’m sure. A lot of them
try to pretend… But it happens everywhere. The worst is
at places like Super Centers. That where I found that
people are most rude. It also bothers me that people let
their kids be so rude, particularly big kids…. They run
around you in front of me and go ‘she doesn’t have and
eye! Look, look!’ Then I want to smack them. I want to
tell them ‘you are very, very rude.’”
4.1.2. Sympathy
Sympathy creates interaction patterns that are dissimilar
for small and large groups. In small groups, data reveal
that sympathy engenders comfortable interaction be-
tween disfigured patients and acquaintances. The latter’s
statements and actions are intended and perceived as
supportive and contribute to the construction of a situa-
tion in which disfigured patients find themselves at ease.
The analysis indicates that varying patterns define the
interaction between patient and members of large groups.
Sympathy shapes positive interaction as people’s support
is employed to construct advantageous conditions for
patients. Instrumentally, patients use this support even in
situations in which it is not needed. Simultaneously, pa-
tients also feel uncomfortable when sympathy transcends
the necessary. They feel that they their disfigurement is
constructed as a grater disadvantage than it actually is
and/or a situation that creates undeserved respect. In this
instance, overt sympathy becomes a negative factor in
the construction of interaction. It is important to note
that sympathy is also associated with the existence of
cancer. In some instances, interacting individuals display
sympathy to patient primarily because of their status of
survivors. Small Group
Lisa provides evidence of a positive interaction with
small groups. She says:
“Nobody tells me anything. The only thing is they ask
me what happened, you know, what is wrong. That’s the
question. Then I have to tell them that I had surgery and
I had cancer and I had a tumor… This is friends, friends
that I haven’t seen in a long time and I happen to meet in
a store while I’m shopping, people that I haven’t seen in
a long time… they will ask questions… and when I ex-
plain to them what happened everybody is nice. They
just want to know what had happened to me and they
don’t make [comments or remarks], not at all, everybody
is nice.” Large Groups
Sympathy in interaction with large groups engenders a
variety of results that include both comfortable and un-
comfortable situations.
Tom states: “Depends on whether or not I’m wearing
my prosthesis, the black patch or the medical patch and I
get different reactions for each of those circumstances.
When I’m wearing my prosthesis out in public… they do
not know that I had surgery. If I wear it … on the street,
in the store, in front of a group of people, at church or in
a meeting, if they do not know I had surgery they still do
not know I had surgery. [Because it is difficult to wear
my prosthesis continuously]5, I wear my black patch.
When I wear my black patch, I get better service. If I
ride a plane… people treat me differently… they are
sympathetic, overtly so… This is a person with a visual
problem, we’ll treat him differently and they do…. I
think they feel sorry for me… They seem to be more
sympathetic towards me and more ready to help me in
stores, primarily in store settings or at the library or
other public places. When I’m out in public service areas,
the service that I receive appears to be somewhat more
magnanimous… I’m going to take advantage of this
thing as much as I can.”
But he also indicates: “Sympathy is good, but at times
I feel that I don’t need it at all. I can do things on my
own and do not need any help.”
Mary says: “I’m very self-confident … around others
because more and more people are very receptive of
cancer survivors. So if you had cancer and you are a
survivor, then people are very supportive…. I could be a
horrible person (I’m not a horrible person) and they
would be like ‘oh, that’s ok if you are a cancer survi-
vor…. People at work have been very supportive… no-
body has been negative about my appearance…. They
simply ask what happened to you.”
4.1.3. Benign Neglect
5This patient informs us that wearing the prosthesis creates a number
of problems. There are problems associated with skin irritation where
the prosthesis attaches to the face. When the skin is irritated, the dis-
comfort forces the patient to wear either a black patch or a medical
atch. Addi
ionally, there are problems associated with the patients’
activities. Wearing the prosthesis causes severe headaches when trav-
eling by plane. Discomfort is also felt when pursuing outdoor activities
or exercising.
A. Bonanno et al. / HEALTH 2 (2010) 418-428
Copyright © 2010 SciRes. http://www.scirp.org/journal/HEALTH/Openly accessible at
Benign neglect refers to situation in which interacting
individuals did not pay particular attention to patients. In
the case of interaction with small groups, data show that
varying patterns of interaction are possible. In some in-
stances, lack of interests on the part of interacting indi-
viduals is felt and acted upon in positive terms. Disfig-
ured patients do not feel stigmatized. Simultaneously,
though, similar situations engender opposite interaction
patterns as patients feel uncomfortable in the absence of
attention paid to them. The fact that interacting indi-
viduals “ignore” patients is not necessary an indication
of comfort in interaction. In the case of interaction with
large groups, benign neglect generates comfortable in-
teraction patterns. The size of the group is a condition
that allows patients to pass unnoticed and this situation
facilitates the manner through they interact with this
group of strangers. Small Groups
Following are a few instances of the consequences of
benign neglect in interaction with small groups.
Carl says: “I have not noticed anything. I don’t think
people feel sorry for me any more or any less. I think
that still they see me as Carl… When I’m with a small
group of people, I don’t see anyone doing anything dif-
ferently for me… They treat me the same as always…
When I go shopping people look at me… it doesn’t feel
good but I don’t let it bother me, I don’t feel like I’m
less of a human. I don’t have to look down like I’m
ashamed to look them in the face, or like they are going
to reject me or anything like that…. It bothers me
Ron states: “I generally try to avoid being seen in a
prominent position… I really do believe that I have
learned to accept it [my disfigurement], but I do realize
that it’s noticeable to people and that it’s pretty obvi-
ous. … I felt good about myself before my cancer. Now,
I look in the mirror and I’m missing a part that’s very
important to your looks…people at work tell me ‘I don’t
even notice that your eye is missing, because I’m so
used to you…. It bothers me, but I accept it.” Large Groups
Joy provides an instance of benign neglect in interaction
with large groups. She says:
“We [my husband and I] go to [college] basketball
games. We have a lot of those here. At the basketball
game is different because everyone is so intent on what
[the players] are doing what they are watching that they
do not pay attention to anybody, because I mean, they
are glued on what is going on on the court so I don’t
notice people reacting to me…. I’m pretty confident
interacting with people except when I need to meet new
people… I used to love meeting new people. I don’t
really enjoy that so much anymore… but I like to be in a
large crowd when people don’t notice you.”
4.2. Always Comfortable Patients
Always comfortable patients are individuals who do not
experience problems interacting in small and large groups
alike. They are well adjusted to their disfigured status
and, while they encounter behavior that could lead to
enacted stigmatization, the interaction does not affected
by them. As episodes of enacted stigmatization are quire
rare, the lack of felt stigmatization denotes
non-stigmatizing interaction patterns. Basic statistics
about this group are summarized in Table 2. As it can
bee seen from that table, no relevant differences seem to
exist in terms of patients’ age and gender.
Fred says: “I feel no difference the way that people
treat me… I don’t see any difference… when we go to
the shopping mall, when we go to the restaurant, when
we go anywhere. I see no difference in the way I’m
treated now and the way I was treated five years ago
[before surgery]…. I have no problems with the way I
look whenever I’m meeting anyone. It’s not something
that I think about and it’s something that I don’t even
consider…. I get some sympathy because I’m a cancer
survivor, but this has very little to do with the way I
Frank continues: [when I interact with people I’m
very confident] Oh, yeah, I think so. I went back to work
on a full-time job where I used to travel a lot and go to a
contractor’s facility in [name of city]… all the time and
meet with people, have meetings, give briefings and
so, … I don’t have any issue with it and there never
seemed to be an issue with those people I deal with.”
[When I go out] “the only people that tend to react are
kids. And they’ll look at you, and it is just like at my
wife’s church preschool class. I went to see her at her
class today and went to lunch after that, and the kids
came up and just looked and said, hey, how you doin’?
And she said, oh, my husband’s a pirate… they said,
okay, great!... I haven’t really had a negative situation so
far…. When I had my knee operation the anesthesiolo-
gist that did the knee operation came to my house during
Halloween and I answered the door and he was standing
there with his child, and he said: you’re really getting
into the part, aren’t you? Thinking that I had an eye
patch on for Halloween. I said, nope, I really have to
have an eye patch. He said: Oh, I’m sorry. That’s the guy
I had four months later to be my anesthesiologist on my
knee surgery, and he mentioned how he had met some-
one with an eye patch. I said that was me. He said: Oh, I
feel so bad about it. I said: don’t worry, it happens all the
time. You know, you get dressed up for something or
whatever… but… it doesn’t bother me and in fact I
called the guy about a part on a pool the other day, told
him my name, he said: yeah, you are the guy with the
bad eye – wait, you don’t mind that I said that, do you?’
And I said, no, I don’t mind that you said that.”
A. Bonanno et al. / HEALTH 2 (2010) 418-428
Copyright © 2010 SciRes. http://www.scirp.org/journal/HEALTH/
Openly accessible at
In terms of the interaction between facially disfigured
cancer survivors and secondary groups, this study identi-
fied the existence of two groups of patients. When inter-
acting with strangers and acquaintances these cancer
survivors can be grouped into always comfortable pa-
tients and occasionally comfortable patients. Always
comfortable patients are patients who do not experience
problems because of their disfigurement and their inter-
action with small and large groups does not lead to felt
stigmatization. While episodes of enacted stigma may
occur, they tend not to affect these well adjusted indi-
viduals, their counterparts, and interaction.
The group of patients classified as occasionally com-
fortable presents more complex patterns of interaction
with secondary groups. This group experiences uncom-
fortable and stigmatizing interaction patterns in specific
instances. At the same time, they experience non consis-
tent or comfortable (i.e., not stigmatizing) patterns of
interaction in other situations. This is the group of pa-
tients that requires the most attention as their interaction
with secondary groups varies according to the size of the
These findings add to the existing literature in a num-
ber of ways. First, they indicate that strangers do display
varying patterns of interaction with the facially disfig-
ured. Accordingly, the statement that “the reaction of
people on the streets or in the neighborhood is …. con-
sistent: they stare at most patient with facial defect” [39]
(see also [15,16]) needs to be revised. This study dem-
onstrates that the behavior of strangers is much more
complex than previously recorded and it entails a num-
ber of distinct interaction patterns.
Second, this research clarifies questions raised by
previous research on the interaction between facially
disfigured cancer survivors and acquaintances [39]. Data
on the various patterns of interaction within small groups
demonstrate the complexity of interaction patterns ex-
isting between patients and acquaintances. Ultimately,
acquaintances are the source of stigmatization and sup-
port alike as they intrude in the everyday existence of
patients but also provide sympathy to cancer survivors.
Third, these findings contribute to the understanding
the issue of the relationship between disfigurement and
cancer. The existence of cancer mitigates the negative
effects of facial disfigurement. It creates a process of
interaction in which people display support to patients
because they suffered from cancer. Once people learn
that the patient’s facial disfigurement is cancer related,
they tend to be overtly supportive regardless of other
Finally, this research underscores the importance of
the reading of the social consequences of cancer gener-
ated facial disfigurement in relational terms. The social
consequences of facial disfigurement emerge as out-
comes of interaction processes. As such, they involve
patients and other segments of society as they interact in
various social spheres. While the study of the manner
through which individuals respond to disfigurement re-
mains important, it is through the process of interaction
that stigmatization or lack of it are constructed.
Three overall recommendations emerge from the
analysis presented in this study. First, patients should be
warned about the occurrence of possible difficulties
when interacting in large and small groups alike. In this
respect, they should be prepared to the possibility of
experiencing episodes of intrusion, sympathy and benign
neglect when interacting with small and large groups of
acquaintances and strangers. Second, it appears desirable
that interacting groups be sensitized about the patterns of
interaction identified above. While complex, this solu-
tion should be considered as educational programs are
discusses and implemented at various levels. Finally, the
issue of the social consequences of cancer generated
facial disfigurement should be studied with an interdis-
ciplinary approach. In this context, it would be desirable
to include a sociological component that would allow
investigators to explore the collective dimension of the
social construction of facial disfigurement and stigma.
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