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Associated with an ancient stigma, leprosy meant exclusion from social life due to the instituted policy of isolation that existed until the twentieth century in Brazil.1
From biblical to modern times, leprosy has been described as a stigmatizing disease, primarily because of the deformities and functional disabilities caused by peripheral nerve damage, and also due to the physical appearance of the affected individual, which may present clinical complications such as ulcerated skin lesions.2,3
This disease represents, even today, a serious public health concern in countries such as India and Brazil, especially due to the unsanitary living conditions in the most vulnerable areas (such as urban or rural agglomerations), which is fundamental aspect in the transmission process.4 Leprosy highlights social inequalities. It also promotes the withdrawal of individuals at a working age from the labor market as a result of physical and/or psychological sequelae, reduced self-esteem, self-segregation and stigma.5
Unlike its English equivalent leprosy, the Portuguese term “lepra” is no longer used in Brazil because of the stigma elicited by its historical meaning, “hanseníase” (Hansen’s Disease) becoming the official name of the infirmity since 1975.6
As shown in Figure 1, between 2014 and 2018, 140,578 new cases of leprosy were diagnosed in Brazil. Among these, 77,544 (55.2%) new cases were male.7
Figure 1.
Mean general rate of detection of new cases of leprosy per 100,000 population as per sex and age group. BRAZIL, 2014 to 2018. Source: Brasil, Ministério da Saúde, 2020.3
In 2018, 208,619 new cases of leprosy were registered in the world: 28,660 of them in Brazil. Of these, 24,780 cases (86.5%) had their degree of physical disability assessed upon diagnosis and 2109 cases (8.5%) had deformities – Grade 2 Disabilities (G2D).8 These cases represent late diagnosis and are more exposed to social exclusion and self-segregation.1
The institution of multi-drug therapy (MDT) in endemic countries during the 1980’s was one of the main strategies to control the disease, resulting in a drastic reduction of its burden worldwide, as well as the number of people with physical disabilities due to leprosy.9
Leprosy is a chronic infectious disease, whose main route of transmission is the upper airways. It has a wide spectrum of clinical manifestations, and its incubation period can last 20 years or even more, which is considered long for a bacterial disease.9 Damage to the peripheral nervous system results in loss of sensation and muscle atrophy, paresis, and paralysis; if not diagnosed and treated in a timely and adequate manner, it can progress to permanent physical disabilities. Leprosy affects people’s lives beyond the biological aspect and interferes more broadly in their social relationships and professional life.10
The stigmatized person relates to their surrounding environment and other unaffected persons in several different ways.5 Among stigmatized people, some are apparently indifferent to their condition, others use it for secondary gains, and others deny it. Within the different relationships between stigmatized and unaffected people, we highlight those who become self-isolated, insecure, aggressive, or reclusive, with a perceived uneasiness in their interactions.10–12
Individuals who are in physical and/or psychological distress can benefit highly from opportunities to be creative and express their feelings. In this sense, integrative therapies showed a significant growth in the nineties, among them art therapy, which has been seen as a treatment for the promotion, preservation, and recovery of health. The integration of three areas of expertise – art, health, and education – enables individuals’ freedom of expression, sustaining their creative autonomy, providing for their emotional and social development, contributing to the overcoming of self-inflicted stigma, and helping them access repressed feelings or emotions.10,13
Art therapy has trans-disciplinarity at its core, linking art, creativity, and psychological and anthropological theories, allowing the individual to create a new consciousness of the self.14 Among the places in Brazil that use art therapy to support the treatment of various diseases are the Psychosocial Care Centers (CAPS).15
Other studies point to artistic expression as a rehabilitating therapeutic process in patients with chronic diseases whose illness resulted in their withdrawal from social life.16,17
The introduction of art therapists in primary healthcare (PHC) has been a considered policy by the public Unified Health System (Sistema Único de Saúde) in Brazil since their insertion in the Family Health Support Center (NASF), which was established by law on January 24, 2008.18
Art therapy can provide subsidies to the National Program for Improvement of Access and Quality in Primary Care (PMAQ), being part of a set of strategies that use art in healthcare, as an instrument for promotion, prevention, and rehabilitation.19
The aim of this study was to investigate the use of art therapy as a resource for the expression and redefinition of stigma in individuals affected by leprosy being treated at the University Hospital Clementino Fraga Filho (HUCFF) of the Federal University of Rio de Janeiro (UFRJ). The specific objectives were to describe the themes that emerged from the workshops, highlighting those related to the creation of stigma in leprosy; identify which materials best facilitated the creative expression of subjects affected by leprosy; and present and analyze the contents of the workshops, prioritizing artistic creations where stigma was present.
Methods
This is a study of an exploratory nature, a qualitative study. The qualitative methodology was selected because it allows for the incorporation of meaning, subjectivity, and intentionality to the object of research. For Flick,20 the subjectivity of the investigator and the persons being examined should be included in the investigative process. Qualitative research allows us to perceive the symbolic meanings of the process of contracting the disease and its treatment. Research can be maximized through a triangulation of techniques, that is, the use of different methods of data collection on the same topic which, according to Minayo, Assis, and Ramos de Souza,21 allows for the combination and overlap of multiple points of view (focus groups and art therapy workshops).
Aiming to integrate the research with the practice of the multi- and inter-disciplinary team, the art therapy workshops were held in an outpatient room of the University Hospital, with the guarantee of not being interrupted during the process. The room had a large table, comfortable chairs and a cabinet to store material, such as colored paper, glue, paint, brushes, and scissors, among other items needed for an art therapy studio.13,22,23
Participants were people with leprosy with Grade 2 Disability, discharged from multi-drug therapy (MDT) who were being followed up at the Clementino Fraga Filho University Hospital of the Federal University of Rio de Janeiro for physical therapy and surgical treatment of ulnar claw, and who agreed to participate in the study.
As for methodological procedures, together with the art workshops, the focus group technique was used24 in the study’s first meeting, taking into consideration its good results in groups with people who might share certain characteristics. During the focus group, questions were configured as themes or categories that allowed them to discover nuclei of meaning.25 All material produced by the participants in the art therapy workshops was photographed and all conversations recorded, transcribed, and analyzed.13
Seventeen separate workshops were held on days when patients also had a medical or physiotherapy appointment, to take advantage of the fact that the participants would already be at the hospital. The art therapy workshops followed the recommended protocol of three psychodynamic cycles13 described below:
First Cycle – named “Diagnostic Strategies,” this cycle is based on individualized free experimentation to enable the creative development of the participants based on the presentation of works and themes from the visual arts, thus expanding their imaginative repertoire with varied images and art style. The goal was to observe which materials and techniques facilitate or hinder expression, and to put them in contact with colors, shapes, and materials such as ink, colored pencils, collage, sculpture, and creative writing, among others. At this stage a theme is not suggested, in order to allow the emergence of private and individualized emotions and feelings.
Second Cycle – named “Creating Stimuli,”13 in which themes are suggested according to an analysis of the first cycle. The therapeutic workshops in this stage include storytelling and writing short stories, among other things. This further enables the exploration of issues that have arisen during the First Cycle, pointing to the group’s central psychodynamics. These stimuli facilitate the unveiling and revealing of latent themes.
Third Cycle – named “Self-Managed Process,” at this stage comes the collective work, where the group analyzes the symbolism of their creations. The completion of the therapeutic process takes place in this cycle, in which participants are given the possibility of selecting an artistic language that facilitates the process for them and which may continue to play a supportive role in their future lives. Building a road of personal strength, repair, nutrition, and security for each individual, it also allows them to recodify together issues that had marked them negatively, starting from a collective endeavor.
This research was approved by the Research Ethics Committee of Clementino Fraga Filho University Hospital at Federal University of Rio de Janeiro under CAAE 11732613.0.0000.5257, and consent forms were signed by all participants. Data collection only began after approval by said committee.
Results and discussion
Focus group session
The resulting sample consisted of 12 individuals (six females, six males), ranging from ages 18 to 58 (average age of 38), all resident in the municipalities of São Gonçalo and Nova Iguaçu, in the state of Rio de Janeiro. Their reported ages at the moment of diagnosis ranged from 9 to 45. The educational background of 10 out of 12 participants in the study is under nine years of schooling; only two participants completed their full 12 years of studies, what is known in Brazil as a secondary education. The participants (P) were identified by the initials of their names, gender, marital status, age, and profession/employment.
The analysis aimed to investigate enacted stigma and self-inflicted stigma,10,26 how and when it appears, and if it appears. In the first meeting, the focus group technique used questions to investigate stigma in the lives of the affected individuals selected for the study.
Grouping participants by lexicon, qualitative references in their statements were taken into consideration and associated with the proposed statement about stigma in leprosy. As for indicators, despite Bardin suggesting a selection according to the frequency of category indicators in the text, this criterion was not observed here. All identified indicators were considered, due to the small size of the group.
The process of categorization and subcategorization, displayed in Tables 1–3, was based on emerging themes from the four motivational questions of the focus group, aiming to identify enacted stigma as well as self-inflicted stigma.10,26
Table 1
Focus group: previous knowledge about the disease: Question 1
| Categories | Subcategories | Indicators |
|---|---|---|
| Means | ∙ on the news ∙ through my neighbor ∙ in the Bible ∙ in the church ∙ from a doctor ∙ none | |
| Previous knowledge of the disease | ||
| Message content | ∙ my neighbor only had half his foot and called it lepra1 ∙ I heard a lot about it at church and they said that the leper was someone who committed a very serious sin ∙ the Bible said that body parts fell off | |
Table 2
Focus group: receiving the diagnosis: Question 2
| Categories | Indicators |
|---|---|
| Outlook on yourself | ∙ I saw myself with a malignant disease ∙ I am a leper ∙ someone who has committed a grave sin ∙ doomed, everyone’s gone, lost my job, lost everything ∙ everything bad happens to me ∙ I saw myself with a lot of injuries |
| The feeling when you got the disease | ∙ I felt the world fall on my head ∙ I stopped being an active person ∙ I would not talk to anyone ∙ my world has fallen apart ∙ I am doomed forever ∙ I saw myself with a malignant disease |
Table 3
Focus group: naming and living with the disease: Questions 3 and 4
| Categories | Indicators |
|---|---|
| Naming the disease | ∙ Devil’s malignant disease ∙ Malignant disease ∙ Rat’s disease ∙ Dog’s disease ∙Lepra ∙ Awful disease |
| Living with the disease | ∙ Fight ∙ Terror ∙ Frightening ∙ Fear ∙ Fear of mutilation ∙ Discredit ∙ Damage ∙ Sadness |
We chose to categorize leprosy as a “disease” in order to improve the chances of discovering how it was referred to by patients.
Focus group motivational questions:
(1)
Had you ever heard of the disease before contracting it?
(2)
When you received the diagnosis, how did you feel?
(3)
If you could give leprosy a symbol or a name, which would it be?
(4)
Define in one word what leprosy means to you.
For Goffman,11 people who suffer stigma can express shared feelings and be open to others’ experiences of other illnesses, as shown in Question 1 replies, describing how people learned about leprosy.
The stigma associated with leprosy brings, from the moment of diagnosis, traumatic experiences, at least until the person finds a way to deal with said stigma, something which may not happen to all individuals. This experience can be addressed by art therapy for those afflicted with leprosy, as well as myriad other traumas, as mentioned on the webpage of the American Art Therapy Association, which describes the use of this technique to overcome the impact of the invasion of the US Capitol, on January 6, 2021.27
According to Silva et al.28 simple diagnosis can have an emotional impact on individuals, in particular self-perception, the new way they begin to see themselves after diagnosis. The main reactions are denial, hiding, or revealing it, and some might become so angry they begin to believe they are being punished or condemned, a process that varies in duration and intensity for each person, bringing a variety of simultaneous feelings, as seen in the replies to Question 2.
Diseases have a history, notably the history attributed to it by individuals in relation to their experience of falling ill with the disease, coping with its effects, and being able to relate to others. As Sournia and Ruffié29 described it, disease is not something concrete that reveals itself to the human eye but rather the product of what that human eye sees and observes. Hansen’s disease is a human and historical event that is described by the outlook and life of those who suffer from it, and Question 3 shows the multiple ways in which affected individuals both named and experienced the illness.
Art therapy workshops
The selection that generated the titles of the four categories was based on the most pertinent nuclei of meaning, in other words, the search for transversal commonalities in the content of the patients’ statements and art work while respecting the initial specific objectives of this study.25
First cycle – diagnostic strategies
In this initial stage of contact with artistic materials, the participants experimented with drawing, painting, collage, and sculpture (Figure 2). Participants’ statements were recorded after their artwork was created, the dialogue being based on the images produced by each individual.13 At this point, the process of making art was totally open-ended and free, without any specific theme or direction. At the beginning of each workshop, a round-table discussion took place to allow for interaction between the participants, who lived far from each other in distant municipalities, giving them time to discuss what they had experienced that week.
Figure 2.
Initial stage of contact with artistic materials – GROUP.
During the first art therapy workshops, the two main themes were late diagnosis and coping with communication after a diagnosis of leprosy.
Late diagnosis
Drawing is a form of visual expression that enables us to symbolically capture and reproduce the artist’s thoughts and feelings. When confronted with her drawing, GMO (female, age 45, married, homemaker) recalled the start of her treatment, when she was forced to visit numerous healthcare centers until finally obtaining a proper diagnosis for her affliction (Figure 3).
Figure 3.
The disease led me to seek several pathways. I felt lost, because I was given several diagnoses. They initially began to treat me as if I had “pano branco” [white cloth]. (P: GMO – women, 45 years old, married, housewife).
The search for a proper diagnosis was one of the most frequent themes during the participants’ conversations. Most participants noted that late diagnosis was one of the main reasons for increased disability (Figure 4) JAR (male, age 24, single, menial work/on welfare).12
Figure 4.
I didn’t know what I had, so I went to several places and each person said it was a different thing. I felt awful. I could not recognize myself. This image shows my desire stay in a corner, to dive, to live a happier life, to feel joy, and to forget this disease (P: JAR, 24 years old, single, general services/on medical leave).
Art plays a fundamental role in revealing, via artistic expression, what is means to experience illness, since medical visits do not always allow for such repressed feelings to emerge. Those repressed feelings come to the fore, in an almost magical process that only expressive therapy can achieve, hence the therapeutic importance12 of creating art. When confronted with one’s own artwork, a person may gain understanding without needing to ask or explain, deciphering meaning within the work itself.
Coping with illness
Participants described their initial difficulty in receiving the diagnosis (Figure 5). PMG (female, age 41, primary school teacher/on welfare) mentioned how anyone can conclude that contracting a disease brings a lot of uncomfortable sensations and feelings, either by one’s own experience or by observing someone else’s experience (Figure 6).
Figure 5.
When you get the diagnosis, it feels like the ground beneath your feet is suddenly taken away. I’m a teacher. I want to be productive again, I want to go back to my daily work, to feel normal, I do not want to think about the disease anymore. (P: PMG women, 41 years old, primary teacher, on medical leave).
Figure 6.
I do not like to talk about diseases, neither this, nor any other [would not name the disease]. I make my own choices. I prefer to see only the good side of life and forget what is bad (P: LFM, women, 31 years old, housewife, married).
Many individuals experience a different aspect of stigma, an aspect whose identity is much more dependent on an external point of view, in other words, how others who are unaffected see the stigma itself. In this sense, Goffman (1988) warns of the stigmatized person’s spontaneous movement towards reducing stigma and the “tensions” that make it difficult for either party when the other is present11 (Figures 7 and 8).
Figure 7.
Learning about the disease was just another suffering I had to face. Even with the sequelae of having a numb hand, and not being able to do my art anymore [graffiti], I still believe in life. But I must say I suffered a lot of discrimination. I had to hide behind a strong character. (P: SSO men, 35 years old, married, general services, on medical leave).
Figure 8.
I felt broken into a lot of pieces like this stained-glass window; what I saw in my body wasn’t mine. Feels like a black bird has landed in my life and disenchanted it. I thought it was the end, I felt horrible (P: MCS, women, 42 years old, ballroom dancing teacher/on medical leave).
Second cycle – “Creating Stimuli”
In this second cycle, the art work selected was in relation to how easy each material allowed for the emergence of repressed feelings.13 The three main topics elicited in this cycle were: self-image; the experience of treatment; and work, friends, and family.
The use of drawing as a projective technique favors the emergence of the deepest inner conflicts. Regarding interpretation, the basic principle is that the drawing itself represents the person, whereas the sheet of paper represents the environment. Thus, the art of drawing is seen as a viable tool to understand how individuals perceive the environment in which they are inserted, and to promote the expression of conflicts experienced via the interactions of individuals with their environment, with others, and with themselves.13
Self-image
In this theme, the chosen technique was drawing, as it allows us to symbolically capture and reproduce an individual’s thoughts and feelings. The use of this technique is based on the premise that the unconscious creates drawings and dreams through the productions of symbols. Drawing as a projective technique favors the revelation of deep conflicts.
At the start of one workshop, during our discussions, JPL (male, age 58, fisherman/on welfare) said leprosy did not affect him, that his life was normal, and that he saw himself as a normal person who liked to fish. When he explained his artwork to the group, which for other participants represented a person fishing, he surprised everyone: “That’s me in the hospital window, watching life go by outside. It was very sad to be in the hospital.” (Figure 9). At this moment, his eyes filled with tears. Drawing contains this element of surprise, for those who create it as well as those who observe it.
Figure 9.
It’s me in the hospital window watching life go by outside. It was very sad to be in the hospital (P: JPL, men, 58 years old, fishermen, on medical leave).
Another important aspect are so-called “accidents” or parapraxis – which include forgetting words, lapses in speech, and misplacing things, among others – that are often brushed off as one being “distracted”. Figure 10 shows a body without hands. Upon reviewing the drawing, its creator failed to point out this important detail, which had been observed by the rest of the group.
Figure 10.
Besides the fact that he did not realize that he drawn self-image without hands, he commented: “everything bad in my house happened to me as if I had been born crucified.” (P: JAR, men, 24 years old, general services/on medical leave).
Throughout the course of our art therapy workshops, the participants’ artwork acquired more intense chromatic diversity and a greater variety of themes was observed. After nine months, a large part of the group, which had felt up to that point they no longer had a place in society, began to reenter the labor force. Therefore, the workshops provided participants with relief from their daily tensions, affording them space physically and mentally to express that moment in their lives.
Recommended interventions should include both lay- and peer-counseling, socioeconomic rehabilitation, community outreach and family involvement to improve the mental well-being of those affected, as well as a holistic approach.
Through the process of awakening and developing one’s creativity, a “creative being” eventually emerges. This occurs through a process of change, development, and evolution of a person’s inner life. New constructions are established, new possibilities, new ways of achieving something that until then seemed impossible. Artistic expression can be extremely important in the establishment of an inner voice that allows participants to articulate this journey beyond the spoken language, revealing what was hidden or repressed through the act of drawing.
The workshops highlighted to the healthcare team issues associated with the identification of stigma, situations that were kept hidden during their medical consultations, such as the feeling of loneliness and/or abandonment during treatment. Art therapy can provide support for individuals who discover their creative inner selves in different situations of their lives, specifically and most particularly in difficult situations such as the onset of a disease.
SMP (female, age 18, student/on welfare) (Figure 11) made us think of the argument that the identity of the stigmatized person is often reduced to their “defect or limitation or deficiency or deformity” and that all other dimensions of their existence considered normal are obfuscated13 by the disease.
Figure 11.
I prefer to draw my face, which has no marks, rather than my body. (P: SMP women, 18 years old, student, on medical leave).
According to Goffman, repressed emotions often have many revealing characteristics, which brings us back to JBC (male, age 32, menial worker), who preferred to leave his sheet of paper blank when asked to draw a self-portrait. As per Goffman, when prejudice is omitted and concealed, it becomes more powerful because it avoids being directly confronted and hides behind that which seems to deny it.11
Treatment experience
For most participants, leprosy treatment continues to be a difficult and painful existential experience. As Monteiro emphasizes, the compulsory isolation practiced in the past greatly contributed to reinforcing the concept of disenfranchisement of leprosy patients to this day. Relegating those afflicted with the disease to the margins of society merely serves to consolidate the identity of the “leper”.30
Goffman and Corrigan report that the question of invisibility in the construction of the identity and social relationships of stigmatized individuals can often mask or hide their other attributes, as illustrated by AGF (female, age 51, married, dressmaker) in Figure 12.10,11
Figure 12.
I always thought I was cheerful, but my family and my neighbors did not see me like this. Sometimes I feel tired of having to come to the hospital to get this disease treated. Remembering my life in the fields soothes my day. I avoid talking about the disease, not least because many do not know what it is and are afraid of it. (P: AGF, women, 51 years old, married, dressmaker).
For therapeutic purposes, the World Health Organization has clinically classified leprosy into multibacillary (MB) and paucibacillary types (PB), leading to two therapeutic regimens lasting 12 and 6 months, respectively,4 with a stipulation of therapeutic regularity as the criterion for discharge: MB patients should be given 12 supervised doses within a span of 18 months, and PB patients should be given 6 doses within 9 months.4 Despite the progress in reducing the duration of treatment over the last five decades, therapeutic regimens are still prolonged, especially because they involve daily doses (Figure 13).
Figure 13.
We are hopeless, walking half aimlessly, a life without color, half brown half numb. Sometimes we feel like giving up because the treatment is worse than the disease. I see myself like this - kind of like a pea. I don’t know; a brown thing. Sometimes it’s a lot of shame to be who I am [laughs] (P: EJC, men, 38 years old, married, bricklaye, on medical leave).
When patients present reactions, treatment becomes more painful and lasts longer mainly because of the adverse effects to medication, especially corticosteroids and/or thalidomide (Figures 14 and 15). Reactions represent an exacerbation of the inflammatory process that can occur before, during, or after leprosy treatment.31 These reactions are directly responsible for the permanent nerve damage that can lead to disabilities and deformities.32
Figure 14.
If this corresponded to a reaction event, I would say that this image shows the spots that were spreading throughout my body (…) everyone looked at me and moved away from me. (…) Nowadays, the interaction with other people with the same disease allows me to see flowers that give meaning to my life. (P: MCS, women, 42 years old, ballroom dancing teacher/on medical leave).
Figure 15.
Having to face the disease caused a lot of anger in me. When I had a reaction, my body burned like a volcano. In those moments, my wish was to run away. (P: JAR, men, 24 years old, general services/on medical leave).
Figure 16.
I will always feel like an artist although I can no longer graffiti. I cannot hold the paint can, but I can use other materials such as colored pens and pencils; it was very good to know this. […] Although I think there is no such thing as a useless phase, I was rather confused, kind of aimless, no path, no nothing. (P: SSO, men, 35 years old, married, general services, on medical leave).
Figure 17.
This is me wanting to be embraced […] the most boring thing was to explain these lumps and the color of my skin to my colleagues. My teachers also kept looking at me strangely. There had to be a class or something in schools to teach that this disease is curable and does not spread easily. (P: MCS, women, 42 years old, ballroom dancing teacher/on medical leave).
Figure 18.
I made a stroller for my daughter to play with. Some of the people in the group might have had the help of their partners; however, for me, it was the opposite. My wife walked away from me and took our daughter with her. That’s why I don’t tell anyone else about my illness. I’d rather be quiet. (P: RCO, men, 36 years old, unmarried, on medical leave).
Work, friends, and family
The impact of the disease on social relationships (Figures 16–18), whether at work or with friends and family, was a recurrent theme in the workshops. Participants’ artistic creations revealed the experience of stigma through expressions such as “invalid, crippled, useless, retarded.” Goffman and Corrigan emphasize that these expressions evoke a pejorative form, imposing a set of implied imperfections on the leprosy patient, showcasing both enacted and self-inflicted stigma and contributing to its perpetuation, destroying the possibility of focusing on other favorable attributes.10,11
One of the themes that most disturbed the group and even generated resistance to the creation of visual art itself was “friends”. Anandaraj highlights that leprosy is a disease that greatly affects an individual’s social life.33 Performing mundane tasks such as buttoning clothes, putting on shoes, or signing one’s name can be severely hampered when hand sensitivity is lost, or fingers are deformed. Reversing this situation and having the support of family, friends, and health professionals are essential for those affected to reconnect with themselves and begin to participate in social activities once again.34
“Family” was a theme repeated in three separate workshops. Some family members are chosen as individual reference points; thus, the subjectivity and complexity of the interrelationships found within the family structure should be taken into account, providing (or not) support, safety, and increased self-esteem.2
“Practically everyone abandoned me. I felt very lonely. Only my grandmother was by my side. I even had to leave the state in which I lived; I came to Rio. These marks are stronger than those left by the disease.” MCS (female, age 42, ballroom dance instructor/on welfare).
During the workshops, it was noted that for most of the participants talking about pain was much more difficult than drawing something about it. There were situations or feelings that were repressed and which, in the process of treating the disease, had no place to be expressed. The presence of negative feelings may engender nonconformity, sadness, shame, insecurity, and a feeling of worthlessness in leprosy patients.35
Most participants had support from their spouses, and this proved to be very important for adherence to the treatment. The exception was RCO (male, age 36, single, on welfare), who was too distant at first. He even stated that “making art is a woman’s thing.” However, he gradually gave himself the right to expose his pain. By choosing sculpture, which is a three-dimensional language, he smiled for the first time throughout the process and was moved when talking about his daughter and the breakup of his marriage after the diagnosis of leprosy: “No one stayed by my side. So, I became my only company.”
Sculpture, in the language of artistic endeavors, provides structure and organization15 and gives access to repressed feelings. According to Gouveia,36 sculpture leads to reflection, allowing for the shaping of feelings and the reshaping of one’s life.
In addition to sculpture, RCO was able to express his playful temperament, until then hidden by his silence, when talking about leprosy. These feelings of exclusion and silence, according to Angerami-Camon, are quite common in individuals who suffer from chronic illness and undergo lengthy treatments. According to the author, many of these feelings can aggravate the disease, as the patient feels like the “walking dead.”37
However, when people feel loved by their family, regardless of their condition, this feeling of love is strongly expressed. According to PMG (female, age 41, married, primary schoolteacher/on welfare), who chose figures that reminded her of her marriage and family, feeling loved makes them stronger and encourages them to overcome difficulties (Figure 19).
Figure 19.
Knowing that I had the disease made me feel ashamed. What helped me was my husband’s strength. He saw me and described me as a healthy person. That was a force for me, an incentive. (P: PMG women, 41 years old, married, primary teacher/on medical leave).
Working together in art therapy workshops forged a loving connection between the participants, which was well-expressed by JAR (male, age 24, menial worker/on welfare) (Figure 20).
Figure 20.
I made a colorful tunnel; at the end there is a light. I feel happier for participating in something. For the first time, someone heard me and wanted to know my feelings (P: JAR, men, 24 years old, general services, on medical leave).
Third cycle – “Self-Managed Process”
This is the phase of collective work in which the art therapist must favor the autonomy of the group, providing the requested materials and leaving participants to their own devices, focusing instead on observation. At this stage, participants are asked to choose themes common to the group to discuss, and to assess their own emotional well-being and shared tendencies.
The artistic languages they chose to repeat during this cycle were collage and painting on fabric.
Collage
Separated into groups of three to search for an image that illustrated their feelings, participants created a collage of a submarine. Afterwards, each group met to assess the meaning of the created image (Figure 21).
Figure 21.
The submarine has a lot to do with our history. At the time of receiving the diagnosis, the will is to disappear, to dive... but we know that it is still possible to believe in our dreams... to achieve our goals. (P: PMG, women, 41 years old, married, primary teacher, on medical leave). I look at it and imagine it taking me to what I want to conquer, with great faith in God (P: GMO women, 45 years old, married, homework – 2. When we have help, it is possible to dive and return to life. (P: GMO – women, 45 years old, married, homework – With support, we do not drown in tears. (P: JPL, men, 58 years old, fishermen, social security benefit).
Painting on fabric
The act of casting paint onto different media physically moves the entire body. With the same intensity, it stimulates the imagination through colors, lights, shadows, and shapes that arise from the gestures made by the artists’ hands on the canvas, and particularly on fabric, which was the chosen medium.15
In this exercise, the intimacy between participants who were engaged in painting was deepened, such that one could actually see and feel that it was a collective painting and not a product of individuals who painted in groups. At the end of the activity, during a contemplative exercise, everyone was able to discuss the experience, the aspects they observed in people’s different body postures during painting, as well as the relationships with their colleagues and the images they created together.
Participants felt the process was stimulating, as the movements of their arms and hands gave life to their paintings, and the freedom offered by these gestures promoted a movement between them. This was reflected in the freedom with which they could interact, complete, or overlay parts of the painting previously done by their colleagues: “Even though they intruded on my drawing, adding a touch or two, I wasn’t upset, because at the time of togetherness, we were a real group,” said IVC (male, age 24, menial labor).
It can be said that painting on fabric brought the participants even closer together. It encouraged them to connect through silent gestures, rather than words, which often distract and distance people from the activity that is being performed, both objectively and subjectively. Staying silent, according to the group’s follow-up conversation, was the biggest challenge (Figure 22).
Figure 22.
For the first time, I understood what it was like to be together without having to explain aloud what was intended. (P: EJC, men, 38 years old, married, bricklaye, on medical leave). It was enriching to be careful about what I was doing and also about other people’s paintings, an experience for my life and my family. (P: LFM, women, 31 years old, homework, married).
Conclusions
This research does not intend to create a framework, but rather to reveal issues of intersubjectivity related to the experience of stigma in leprosy. The art therapy workshops represented an important dimension of healthcare, allowing participants to better understand how the disease is perceived by society at large and its repercussions on their own lives.38 Routine healthcare, even when performed by a multi-disciplinary team, is not capable of providing answers to feelings of stigma and social isolation. Despite the closing of leprosaria, which were completely segregated from society in the past, the image of the person afflicted with leprosy still remains a negative reference for members of the group. This was expressed in drawings and in spoken words, whether by the absence of hands and feet in their drawings, or by phrases like “everyone abandoned me.”
Creating space for these “laments of the soul” to be shared seems to permit individuals to look inwards and develop a new self-image. Individuals did, in fact, begin to look at themselves more. The aforementioned chromatic diversity did not show up only in their artwork, the participants themselves also became more colorful, their clothing more cheerful, often exposing parts of the body which they had previously represented by omitting them from their drawings.39
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