Meeting of powerful women: social occupational therapy intervention strategy with informal caregivers of people with intellectual disabilities¹

Abstract

Objective

This paper analyzes the experience of a group called “Meeting of Powerful Women” developed by occupational therapists in a Service for Coexistence and Strengthening of Bonds of Basic Social Protection of the Unified Social Assistance System, with women who are informal caregivers of people with intellectual disabilities.

Method

This is a retrospective, exploratory and descriptive study, based on document analysis of the group participants' reports, where consultations were carried out with diverse sources such as reports developed during the interventions, image bank and field diaries of the analysis. The data were interpreted through the theoretical and methodological assumptions of Social Occupational Therapy.

Results

The interventions, through conversation rounds, thematic activity workshops and a photo essay, promoted a space for reflection and exercise of female protagonism and the strengthening of the support network and social participation. Gender themes were addressed based on the participants' daily life and experiences, such as: overload, sexism, sociocultural beliefs, sexuality and objectification of the female body.

Conclusions

The group facilitated the strengthening of bonds and the creation of social support networks and the (re)construction of life projects that valued other occupational roles, favoring the deconstruction of the strict figure of woman-mother-caregiver.

Keywords:
Occupational Therapy; Welfare; Social; Caregivers; Gender; Intellectual Disability

Resumo

Objetivo

Este trabalho analisa a experiência de um grupo denominado “Encontro de Mulheres Poderosas” desenvolvido por terapeutas ocupacionais em um Serviço de Convivência e Fortalecimentos de Vínculos da Proteção Social Básica do Sistema Único de Assistência Social, com mulheres cuidadoras informais de pessoas com deficiência intelectual.

Método

Trata-se de estudo retrospectivo, de caráter exploratório e descritivo, com base em análise documental dos relatos das participantes do grupo, onde foram realizadas consultas a fontes diversificadas como relatórios desenvolvidos durante as intervenções, banco de imagens e diários de campo da análise. Os dados foram interpretados através dos pressupostos teóricos e metodológicos da Terapia Ocupacional Social.

Resultados

As intervenções, por meio de rodas de conversa, oficinas de atividades temáticas e um ensaio fotográfico, promoveram um espaço de reflexão e exercício do protagonismo feminino e o fortalecimento da rede de suporte e da participação social. Foram abordadas temáticas de gênero a partir do cotidiano e das experiências de vida das participantes como: sobrecarga, machismo, crenças socioculturais, sexualidade e objetificação do corpo feminino.

Conclusões

O grupo propiciou o fortalecimento de vínculos e a criação de redes de suporte social e a (re)construção de projetos de vida que valorizaram outros papéis ocupacionais, favorecendo a desconstrução da figura estrita de mulher-mãe-cuidadora.

Palavras-chave:
Terapia Ocupacional; Assistência Social; Cuidadores; Gênero; Deficiência Intelectual

Introduction

Women can predominantly play the role of caregivers in situations of family dependency, assuming the central role in managing this care and family protection, as shown in this study. This centrality in tasks with the family is accentuated in the figure of the woman-mother, culturally reinforced by gender stereotypes in the patriarchy, including the omission of other family members, mainly the father figure (Wollstonecraft, 2016; Santos & Oliveira, 2010). Other social roles that reinforce women's submission, as well as the centrality of life and its extension, restricted to domestic performance, are presented by Friedan (1971) as a critique of the American way of life in the 19th century, and can be transposed into Brazilians’ everyday life and the harsh and seductive strategies used, even in contemporary times, to dominate bodies and lives. They are situations and taxes from generation to generation since childhood on how to be a woman and what prestige space is assigned to them: the home and domestic chores.

The discussion of women’s social roles in Western Society is permeated by violence, violations, repressions, and oppressions, and even with the achievements in the field of civil and social rights, cultural practice still reproduces the patriarchal model justified by the permissiveness and superiority of men over women, characterized by misogyny². Thus, “despite the strength and political effectiveness of all social technologies, especially gender technologies, and, within them, gender ideologies, violence is still necessary to maintain the status quo. This does not mean adherence to the use of violence, but a painful realization” (Saffioti, 2004, p. 148-149).

The different sexes are conditioned to fulfill specific and diverse functions, and this learning is a social process, generally linked to the gender at birth. Characteristics are treated as if they were their own “nature”, in which the girl usually learns to be sweet, passive, altruistic and dependent; this role being opposed to that of the man, who must be aggressive, active, competitive, and independent. Because they are cultural constructions, women must play a role that is socially expected of them: “being a woman” and “accepting” the power relations established between the sexes as natural (Dalbeto & Oliveira, 2015; Weschenfelder & Colling, 2011a).

The incorporation of the maternal identity or the acquisition of the maternal role, determined by the sexual roles in conditioning relationships, involves culturally defined actions and social demands of expected behaviors, so that the woman assumes the main role of care and availability, valuing motherhood, as its social function (Barbosa & Rocha-Coutinho, 2007; Pinquart & Teubert, 2010). The discovery of a disabled child entails more pronounced changes in the woman's social identity than those introduced by motherhood itself. No longer dedicating daily hours to social interaction and care for themselves, to exclusively exercise the role of mother, relegating to the background the identity previously constructed by their life story and projects (López, 2016). After the birth of this child, there is a relevant change in the woman's social roles, who start to postpone their other occupations according to the needs generated by the new circumstance, and their main role becomes that of mother of that child (Barrozo et al., 2015). It is important to emphasize that this characterization can be extended to other female caregivers, such as grandmothers, sisters, aunts, and cousins.

An informal caregiver is characterized as a person who employs a large part of their daily hours in the activity of caring, assuming all or most of the responsibility for the assistance provided to the disabled person, being recognized by the other family members as the main provider of care, without receiving economic remuneration (Braccialli et al., 2012; Gomes et al., 2020). By tracing the sociodemographic and quality of life profile of caregivers of people with intellectual disabilities, Silva & Fedosse (2018) found that the role of caregiver is predominantly performed by women, with an average age of over 50 years, mothers, with a low level of education and economically vulnerable, who dedicate themselves to full-time care. Pimenta et al. (2011), when assessing the quality of life and burden of informal caregivers of people with intellectual disabilities, found that mothers obtained lower values ​​in all domains of quality of life measured compared to those of other family members. Also, considering gender, these caregivers had lower scores than men in all domains of quality of life, in addition to reporting a high level of burden.

From this perspective, such gender inequalities must be overcome, since the care process demands responsibility, time, dedication and instrumentalization from those who perform this function, causing damage to the performance of daily activities, social relationships, access to support networks and participation and the elaboration of strategies for coping with aspects of overload resulting from care, accentuating social vulnerability, weakening bonds, and violating their rights.

The World Report on Disability (World Health Organization, 2012) points out that, worldwide, people with disabilities have lower levels of education, lower economic participation, higher poverty rates and worse health prospects compared to people without disabilities. For many people with disabilities, social security and support networks are prerequisites for their social participation. The document also emphasizes the importance of Social Assistance services, since the lack of these devices can make people with disabilities become extremely dependent on their families, preventing both parties from accessing their rights and exercising their citizenship.

In order to promote access to these social rights, there are Services for Coexistence and Strengthening of Links (SCFV) in Brazil, which are based on practices that promote coping with social vulnerability, understanding that the most effective way to carry out such action is through socialization, promotion of autonomy and protagonism as a rightful citizen (Brasil, 2009). The SCFV is a service inserted in the Basic Social Protection of the Unified Social Assistance System (SUAS) with the proposal to carry out group actions, organized from individual and collective paths of the participants, in order to guarantee progressive acquisitions to its users of according to their life cycle, to complement social work with families and prevent the occurrence of situations of vulnerability and social risk (Brasil, 2017). This service is regulated by the National Typification of Social Assistance Services, via CNAS Resolution No. 109/2009, reordered through CNAS Resolution No. 01/2013.

The practice of occupational therapy in an SCFV such as the one in the context of this study can promote strategies and create alternatives for people with disabilities and their families to expand their occupational repertoire, their support networks, and their social participation, through meaningful activities and facilitators of social and affective exchanges in the family and community, based on valuing their knowledge and realities.

Social occupational therapy uses resources and technologies to mediate the approach, follow-up, apprehension of the demands and strengthening of the subjects and groups to which it directs its action (Lopes et al., 2011). The use of the activity enables learning and recognition of the subject's needs and the development of their ability to seek their own and creative solutions, making the technique dependent on the interpretation and apprehension of reality, and not the opposite (Barros et al., 2002; Lopes et al., 2011; Silva & Malfitano, 2021).

This study presents the results and analyzes of a research on the experience of a group called “Encontro de Mulheres Poderosas” (Meeting of Powerful Women) developed by occupational therapists in an SCFV with women who are informal caregivers of people with intellectual disabilities. During the meetings, Comics, considered a form of artistic expression characterized by the narrative of a story through sequenced images with a predominance of visual stimuli, were used as a resource (Dalbeto & Oliveira, 2015). The literary genre aims to reach economically and socially differentiated audiences by approaching transversal themes present in society and expressed by sociocultural issues (Vergueiro, 2005; Weschenfelder & Colling, 2011a).

The choice of comics as a resource showed significant reflective and intervention potential, since through the representations developed in this universe it was possible to understand how women were portrayed and understood by society in a given context and historical period, analyzing the social constructions created and imposed (Siqueira & Vieira, 2008). Patriarchal and sexist values that, even contested for centuries, are latent in contemporary society and are rigid regarding the roles played by the female figure (Coutinho, 2010). Comic books, as a literary genre, were initially idealized, created and designed by men and for men, with the role of women in them being a portrait of the macho society in which they were subjugated by male dominance, seen as victims, defenseless and fragile girls and/or secondary characters who only helped the superheroes (Siqueira & Vieira, 2008; Weschenfelder & Colling, 2011a, 2011b).

As a result, this group of female caregivers was named “Meeting of Powerful Women” with the purpose of re-signifying the social roles of women and reflecting on 'being a woman' in contemporary times, coping with the burden of care and expanding the support network Social. The word “powerful” refers to terms such as having power, autonomy, freedom, protagonism, becoming empowered, the “empowerment” itself.

Historically, the term “empowerment” was widespread, and since the 19th century it has emerged as an understanding of authorization, distribution of power, also linked to social justice and the emancipation of women, although still institutionalized, restricted to some spaces and agendas. According to Sardenberg (2008), from the 1970s, it comes to be characterized as a process, linked to social movements, through which women develop a social and critical conscience and that would allow them to acquire capacities for action, both individually and collectively, and with a perspective of social transformation, the so-called Girl Power. However, these agendas were incorporated into reformist democracy, and, in this dispute, they did not play the revolutionary role of overcoming capitalism and a class perspective. In contemporary times, this term is even closer to the liberal character employed, widely propagated by bodies and institutions such as the World Bank, linked to individualism, personal effort, and starts to reinforce the status quo and guarantee the continuity of dominant practices and consumerism (Sardenberg, 2008, 2018; Moraes, 2018). In this study, we adopt the perspective of liberating empowerment, understood as a process by which women achieve autonomy and self-determination, as an instrument for the eradication of patriarchy, a means and an end in itself (Sardenberg, 2008). This approach focuses on organizing women into collective action, while not disregarding the importance of empowerment on a personal level.

With this, we reaffirm this understanding of the term “empowering” as an individual and collective process of overcoming the patriarchal and capitalist society, generating protagonism, freedoms, knowledge, access, equity, participation and social transformation, even understanding all the limitations of the historical context current displayed. Thus, this study analyzes the experience of the group “Meeting of Powerful Women”, developed by occupational therapists in a SCFV of the Basic Social Protection of SUAS, with women who are informal caregivers of people with intellectual disabilities, with the objective of verifying whether the actions enabled the these women resignify their social roles, create strategies to face the overload of care, as well as expand their support and care networks.

Methods

Retrospective, exploratory and descriptive study (Minayo, 2009), based on document analysis (Kripka et al., 2015), in which diversified sources were consulted, such as reports developed during interventions, image bank and field diaries about a group at the SCFV of the Association of Parents and Friends of the Handicapped (APAE) in Vitória - ES, developed by occupational therapists with women who are informal caregivers of people with intellectual disabilities, called the group “Meeting of Powerful Women”. The documentary research was elaborated from materials that did not receive analytical treatment, consisting of the analysis of contemporary and retrospective documents, scientifically authentic, with the purpose of describing or comparing social facts (Pádua, 2019).

A qualitative approach (Minayo, 2009) was used to understand the participants' narratives, their life history and participation in the proposed activities obtained from field diaries, image records and information documented in medical records, and through information provided by through a demographic and socioeconomic questionnaire, with the economic class of the participants being estimated by the Brazilian Economic Classification Criteria (CCEB), scores on this instrument range from A (45-100 points) to D-E (0-16 points) (Brasil, 2015).

The collected data were submitted to the fundamental phases of content analysis: pre-analysis, material exploration, treatment of results, inference, and interpretation. Content analysis consists of a set of communication analysis techniques through systematic and objective procedures for describing the content, indicators (quantitative or not) that allow the inference of knowledge related to the conditions of production/reception (inferred variables) of these messages (Bardin, 2011). Subsequently, the data were interpreted under the theoretical-methodological assumptions, in permanent construction, of social occupational therapy and through dialogue about discussions on gender and the study of disabilities.

The study was approved by the Human Research Ethics Committee (Opinion No 3.775.581), CAAE No. 22829319.1.0000.5073, as recommended by the Norms for Research Involving Human Beings (Res. CNS 466/2012 and Res. CNS 510/2016) of the National Health Council.

Data were collected from the material produced and documented from the reports of meetings held at the SCVF of APAE in Vitória, Espírito Santo, which provides care to young people and adults with intellectual disabilities and their family members/caregivers. In this service, family members/caregivers remain at the institution during the care of the disabled person and participate in specific activities, such as conversation circles, cooking and experimental cooking workshops, water aerobics, groups, and thematic workshops.

“Meeting of Powerful Women” was implemented by two occupational therapists from the institution, two interns and a professor from the Department of Occupational Therapy at the Federal University of Espírito Santo (UFES). For the establishment of actions, the project team identified individual demands and those of the women's group regarding access to information on emerging topics based on the history of participation in the institution's activities and discussions with the SCFV's interdisciplinary team.

Subsequently, the interventions of the meetings were designed and built through intersectionality³ of the themes: Empowerment, a process that involved the acquisition of information about female protagonism throughout history and the critical and conscious construction of the conquest of women's social rights; Strengthening of the Social Support/Support Network, based on the institutional link and identifications with the life stories among the participants - the construction of this social support network was favored, promoting emotional effects and collaboration among the group members; Social Participation, action, interaction and effective and organized involvement in actions that involve life in society, reflect the individual's awareness of their position in a given context or social system - in this topic, the themes of machismo, sexism, related sociocultural beliefs were discussed gender, sexuality and objectification of the female body; Construction of Life Projects, in a dialogical way with the participants - it is located in the field of group belonging and the exercise of citizenship, referencing the future through projected actions. In the construction of these new life projects, the needs and desires to reduce the burden of care arising from the excessive role of caregiver and the rescue of femininity, self-care and protagonism were identified, guiding the process of elaboration and management of conflicts and personal and emotional changes. social.

In the meetings, the Conversation rounds methodologies were used - with the purpose of prioritizing discussions around the themes in a dialogical way, allowing the presentation of personal elaborations and positioning of the participants (Méllo et al., 2007), and Activity Workshops (Lopes et al., 2011; Silva & Malfitano, 2021) - through resources such as storytelling, character creation, costume sewing and photography, combined with the methodological theoretical assumptions of social occupational therapy.

The actions were developed through four groups, totaling 16 moments, with four meetings per group, lasting approximately one and a half hours, with an average interval of fifteen days, between September and December 2018. The invitation to participate in the meetings was carried out personally by occupational therapy professionals in the waiting room of family members in different shifts through posters and digitally in a conversation application in the SCFV group.

Results and Discussion

From the meetings, it was possible to map the profile of the participants: women aged between 23 and 82 years (mean age 55 years and 7 months), 87.0% mothers, 6.5% grandmothers and 6.5% sisters of people with intellectual disabilities, in a total of 32 participants. Marital status: 36.0% single, 32.0% married, 16.0% divorced and 16.0% widows. Education: 48.1% complete high school, 18.4% elementary school I, 14.8% elementary school II, 3.7% higher education, 3.7% technical course and 3.7% incomplete high school. Profession: 51.8% housewives, 18.5% self-employed, 11.1% unemployed, 3.7% students, 3.7% teachers and 3.7% pensioners.

The economic class estimated through the Brazil Economic Classification Criteria showed that 48.4% of the participants correspond to class C2, 29.6% to class C1, 24.1% to class D-E, and 6.9% to class B2. The average age of children/relatives with intellectual disabilities was 26 years and 6 months. The socioeconomic data of the participants corroborate the studies by Silva & Fedosse (2018) and Barrozo et al. (2015) regarding the predominance of adult and elderly women who play the role of informal family caregivers. This occurs due to parental, physical, and affective proximity and the fact of being a woman. In addition, the data are consistent with the level of education and lower economic class of informal caregivers, evidencing the intersectionality between gender and class issues posed as an expression of the social question in these contexts of inequalities, which can be added to the question of race in many of the cases (Collins, 2017).

During the activity workshops, the use of comics as a mediator for reflections on the creation of strategies and tools for coping with social vulnerability and promoting protagonism stands out. The use of comics helped the development of themes and facilitated the understanding of female representation, related to social constructions imposed by patriarchal and sexist values (Coutinho, 2010).

In the first meeting, individual presentations of the team and participants were held in the conversation rounds, motivating the discussion related to the name of the group associated with themes such as the feminist movement, the cult of the female body and the universe of superheroines in comics. Thus, it was observed that the participants were invited to learn about the group's proposal by identification, because they felt they were women who should be recognized and valued for the social roles played, or because they did not feel they belonged to what is socially required for them to be considered powerful women. Some report being attracted by the name of the project, out of curiosity:

I was curious about the poster and wanted to know what a Powerful Woman looks like. (Powerful Woman 6).

Other participants reported considering themselves powerful in everyday life because they had many tasks to perform, including the fact that they are mothers of people with disabilities:

Every mother of a person with a disability is a powerful woman, a true heroine. (Powerful Woman 11).

They also added statements related to aesthetic beauty standards to which they do not feel they belong, such as chemical processes for hair straightening and muscular and sculptural bodies

I don't need to be all 'fit' and muscular to feel powerful (Powerful Woman 2).

I only dream of a body like that. (Powerful Woman 16).

I don't dye anymore, I like my hair white. (Powerful Woman 18).

I love my curly hair. (Powerful Woman 22).

These participants reported low self-esteem when they felt affected by the labels and beauty standards reproduced by the media, present in beer and car commercials, exposing the female body in order to reach the male audience.

They also discussed the expression of the macho culture, reported the obstacles to exercising social participation, including in the family environment, where they have or have had difficulty in positioning themselves, in the condition of submission, with absence of speech in affective relationships, generating regret in some according to them, for their own well-being, and in some cases allowing gaps in family relationships, opening up other relational possibilities:

No man commands me. (Powerful Woman 6).

I put them in their proper place. (Powerful Woman 3).

During the second meeting, the stories of women from the universe of comics, such as Wonder Woman, Hawkwoman, Batwoman, Storm, Vampire, Jean Grey, Black Widow, among others, were also addressed through the conversation round, among others compared to the female personalities of the context. Brazilian, like the actress and singer Carmen Miranda, the soccer player Marta Silva, the military Maria Quitéria, the communicator Hebe Camargo, Princess Isabel, Maria da Penha, Marielle Franco, and regional personalities like the Espírito Santo Maria Ortiz, besides Mother Tereza of Calcutá. This discussion, mediated by narratives of the stories of characters and public figures, gave the participants the opportunity to ask questions about the everyday life of a heroine and a woman on a day-to-day basis, in order to address the socially expected roles and played by both and their overcoming.

A comment that stood out in relation to the lack of knowledge of most of the participants was the salary discrepancy between men and women in the exercise of the same function. This discussion was linked to the disclosure through the media about the lower salary received by the main actress of the movie “Wonder Woman” when compared to the values of protagonists of other titles in the DC Comics universe. Some of the participants showed astonishment and dissatisfaction with the exposed situation and vented:

I thought that this kind of thing only happened in Brazil, I don't think it's fair that she earns less, she had to do a lot to get this role, learn to fight, run risks. (Powerful Woman 9).

Going into themes about the struggles and achievements of the feminist movement, many of the participants associated changes in family dynamics, the division of domestic tasks, domestic violence, blaming the woman and/or the abandonment of paternal responsibilities when it is discovered that the child has some disability:

He says that the obligation to care is mine, because I am the mother. (Powerful Woman 14).

My husband doesn't rub anything in my face, but he doesn't help taking care either. (Powerful Woman 23).

Today I'm alone to take care of my son, but when I had a husband he didn't help either. (Powerful Woman 7).

It's your obligation to do this. (Powerful Woman 3).

I regret not having demanded more and not having let other family members participate in the care. (Powerful Woman 11).

Historically, the action of taking care of children has always been considered feminine due to the gender stereotypes associated with the figure of the woman-mother-caregiver, who has the ability and mastery to perform tasks that involve fine movements associated with the characteristics of infinite kindness and patience (Figueiredo et al., 2018).

In the care-paternity relationship, some authors point out that, in addition to direct abandonment, when the man does not accept the reality of the birth of a child with a disability because of the idealization carried out during pregnancy, indirect abandonment may occur, which is when the fathers do not know how to act in relation to care because it is an activity little assigned to men, opting for absence, so that the responsibility becomes only the mothers’ (Silva et al., 2019). In these cases, men have internalized the dominant family model, in which mothers should be responsible for childcare and fathers for material provision (Henn & Sifuentes, 2012).

From the questions and reflections raised through the conversation rounds, it was suggested, in the third meeting, an activity workshop with the proposal to create and materialize new superheroines that represented the participating women, contemplating identity elements such as name, personality, skills/powers, physical appearance and clothing, providing cardboard, fabrics, beads, paints, pencils, threads, among other materials for their manufacture.

During this meeting, there were exchanges of experiences and immersions of the participants based on the practices of care for the disabled family member, the centrality of family care, plus reports of physical and emotional overload. Silva & Fedosse (2018) point out that the predominantly role of caregiver exercised by women can lead to overload and predispositions to risks of worsening weaknesses related to mental health, such as depression, negative emotional states, behavioral disorders, and insomnia. Most participants experience or have experienced situations of stress resulting from the exercise of full-time caregiving, in addition to their household chores, representing a significant extra workload. They still link to this everyday overload reports of verbal violence suffered in the domestic environment, in a sexist cultural context, which directly influence their realities. It is important to emphasize that the city of Vitória is one of the Brazilian capitals with the highest incidence of violence against women, with machismo being a cultural reality in Espírito Santo (Waiselfisz, 2015).

Figure 1 shows the engagement process in the creation of superheroines and the presentation of their characteristics.

Figure 1
Process of creation and presentation of superheroines during the Meeting of Powerful Women.

From the meetings, the participants developed four superheroines, entitled: Warrior Woman - characterized by being active 24 hours a day, having fists of steel, allowing the crossing of arms and bringing family members closer together, having the power to promote protection and socialization to children, with premonitions and supervision in allusion to eagle vision; Maria de Fátima - has a strong personality, is intelligent, persevering, courageous, strategist and powerful, being a woman of attitude with the power of freedom, overcomes all obstacles and adversity, carries the rights of women in her hands; Goddess of Love - features femininity, her power is to fight to combat situations of physical and verbal aggression, she is a defender of loving relationships; Nega Maluca - in allusion to the cloth doll due to its “eccentric and striking” characteristics (Powerful Woman 3), choosing traits that they referred to being similar to them, from the need for representation, such as “curly” hair (Powerful Woman 11), “big nose” (Powerful Woman 6), pieces like “g-string” panties (Powerful Woman 9), large jewelry and a tattoo with a feminist symbol on her left shoulder, her power is to be whatever she wants, representing her autonomy.

Throughout the process, the participants talked to each other about the superheroine being created, in relation to appearance and personal characteristics, in order to establish and/or consolidate a bond, raising questions about their daily lives and identifications. In some groups, the construction demanded more from some participants than from others, who sometimes assumed a passive posture, requiring the intervention of the occupational therapy team to provide interactions. The collective realization of the proposal allowed moments of exchange of experiences and acceptance by the group, the construction of bonds of friendship during the process and feelings of representativeness in relation to the final result.

The debate about the female gender took place intensely in the groups, since all the participants suffer from some aspect of the dictatorship of beauty, being portrayed in the comics as unreal women, as they begin to inhabit the comics from a male projection on the models. claimed by women, accentuating thin and curved waists, full busts and hips, reinforcing ideals of beauty among young people, based on the eroticization of the superheroine, since they are stereotyped, objectifying women (Dalbeto & Oliveira, 2015; Vergueiro, 2005). Superheroes are products of the unconscious, and from them it is possible to see the dominant values ​​of a society and time, hypersexualization in current comics is denounced, bringing a claim for greater female representation in media that portray other roles, characteristics, and values, different from those disseminated by machismo, as these representations end up only reinforcing the youthful and sensual beauty standard. The construction of identities is considered individual, but they are also socially constructed, and can be modified when influenced by other representations and, through them, help society in the long term to change thoughts and minimize gender inequalities (Coutinho, 2010; Siqueira & Vieira, 2008).

From the elaboration and creation of the superheroines that represented the groups, photographic essays were carried out, used as a resource, in the activity workshop in the fourth meeting. The materialization of the costumes was carried out based on the sketches produced by the participants, made through the collaboration of a social educator from the SCFV who has a background in fashion. During this workshop, the costumes were made available on mannequins accompanied by props of the characters created so that the participants could choose and produce themselves, thus promoting a greater approximation and re-signification of the concept of superheroine.

At this meeting, the four superheroine outfits were made available to all groups, in addition to extra covers and adjustments when necessary. At that moment, the participants' desire to meet the heroines created by other groups was observed, highlighting different personal characteristics and representation in the choice of clothes and props, trying on the clothes, and characterizing themselves in a playful and theatrical way to the identity elements of the created super-heroines. The activity workshop enabled the rediscovery of other social roles through such garments that valued characteristics chosen by the participants and thus could perceive themselves as women and heroines of and in everyday life, promoting self-esteem and social participation through the exercise of female empowerment. Figure 2 shows the photographic process of the meeting.

Figure 2
Photoshoot during the Meeting of Powerful Women.

Even though society defines unattainable standards of beauty through sociocultural and media processes, the participants showed satisfaction and amazement when observing their images on the camera screen during the test:

Is this me? Does this camera work a miracle? (Powerful Woman 16).

I didn't know that the camera already did photoshop! (Powerful Woman 6).

Girls, look how pretty we look in the photos even when we are full of limps - laughs. (Powerful Woman 21).

My son is 32 years old and I've been at APAE for 30 years, I've never had a moment like this one. (Powerful Woman 26).

My family won't even believe it's me in these photos, we look very sexy - laughs; (Powerful Woman 16).

According to Barros (2004), social occupational therapy has citizenship as an axis of its scope and finds in its field of action a look specifically focused on the subjects, the human doing and the meanings and resignifications of this doing in everyday life, which it means thinking about how to understand these experiences, demanding constant construction, deconstruction and reconstruction on how normative processes affect the ways of living. Initially, some participants were excited and uninhibited, and others were shy and/or embarrassed by the proposal, not showing such intimacy with the camera. However, when observing themselves in the photos on the camera screen, the women showed enthusiasm and joy, some showing changes in posture and attitudes when dressed in each of the clothes, encouraging each other to dress up as heroines and experience different roles.

During the rehearsal there were suggestions for individual and group photos, as well as poses stimulating interaction between them, as this interaction took place in front of and behind the cameras, thus, they felt more confident and comfortable with themselves. The understanding of disability as a term intertwined in the intersectionality of race, gender, sexuality and class locates it as a social and historical construction, based on a social and historical norm (Clímaco, 2020). It is relevant to consider as social markers of difference, in addition to gender and sexuality, disability and intersectionality that reinforces the dynamics of marginalization of these subjects, such as race, generation, ethnicity, religion, social class, among others (Melo, 2016). Historically, patriarchy operated in such a way as to separate individuals into normals and abnormals. Mothers of people with disabilities point out that the institution of patriarchal motherhood challenges them in a different way, as they are not compelled, but discouraged, to reproduce and take care of themselves, experiencing a normative motherhood (Clímaco, 2020). Women in the real world can suffer from self-esteem and self-acceptance problems because they do not fit into imposed social standards and are often stigmatized due to family disability, class and color. Photography can be an instrument of female empowerment and self-esteem if used in a way that reframes standards and values ​​the diversity of these women.

At this meeting, the photographic essay was used based on a theoretical basis to provide greater representation for all participating women, enabling, through the redefinition of social roles, the acceptance of their own bodies and appearances, in addition to reflections on the invisibility and contempt of everything that is culturally associated with the feminine and the overvaluation of what is associated with the masculine, resulting in the domination of men over women both at the family level and in society in general. Occupational therapy should be supported by social participation strategies, seeking the dimension of a practice that goes beyond the limits of the individual subject, scaling the urgency of interventions based on the collective, on the structure and on social transit (Melo, 2016). Figures 3 and 4 show the photos taken during the sessions and edited to immerse the participants in the universe of comics.

Figure 3
Individual photos of the photo essay carried out. Legend: Powerful women.

Figure 4
Collective photos of the photographic essay carried out. Legend: Powerful women.

From the photographic session carried out, the participants were able to look at themselves, their own bodies and identities. This activity rescued the daily life of these informal caregivers of people with intellectual disabilities, encouraging their self-discovery, self-knowledge and enhancing their female identity, since the photo editing remained focused only on immersion in the universe of comics, not changing the body image of the participants.p

The photos were published with the authorization of the participants through social media, in the sector's institutional newspaper and presented in the family members' waiting room. On the occasion, all the finished photos were presented, providing opportunities for mutual praise, recognition of women from other shifts who participated in the proposal, and the strengthening of bonds, in addition to allowing them to perceive themselves from a new perspective. The actions of social occupational therapy should articulate the macro and micro social levels, discussing the provision of intersectoral service networks that increase awareness/participation of the community and subjects in the problem-solving process, contributing to the re-signification of public and institutional spaces, promoting access experiences and new ways of doing things (Monzeli, 2013).

The realization of the proposal made it possible to read the daily life of these women, facilitated interventions and created a space for exchanges, affection and strengthening of their personal and social support networks. The central axis of social occupational therapy actions is the elaboration of strategies for the creation and/or strengthening of social support networks for subjects in contexts of vulnerability, guided by the right to citizenship (Barros et al., 2002; Lopes et al., 2011). As a practical-professional action strategy, social occupational therapy has developed and used resources and social technologies and participatory work methodologies based on actions that seek to offer protected spaces for coexistence and belonging (Silva & Malfitano, 2021). In this sense, the elaboration of the activities developed during the “Meeting of Powerful Women”, focused on reality and based on the physical, emotional and social characteristics of the participants, helped to identify other social roles, mainly focused on the feminine, enabling the recognition and re-signification of everyday experiences. In addition to the deconstruction of the figure of women in the role of woman-mother-caregiver. Made possible through the construction of new life projects that value self-care and protagonism, plus, the deconstruction of sociocultural beliefs of patriarchy related to gender. We also consider that the activities developed were used in this context as an instrument for the socio-political, cultural and affective emancipation of the participants.

Final Considerations

This study pointed out that women are the main informal caregivers of family members with intellectual disabilities, are of an advanced age, have more than two decades of dedication to this activity and belong to lower economic classes. Thus, we reaffirm the importance of interventions aimed at the reality of the participants in order to prevent situations of social vulnerability to which they are susceptible. The “Meeting of Powerful Women” provided the exercise of female empowerment to the participants through the discussion and elaboration of themes related to sociocultural beliefs related to gender, sexuality, and women's rights, promoting the deconstruction of the strictly woman-mother-caregiver figure. This reframing enabled the creation of coping strategies for the burden of care caused by the predominant dedication to the family member with some degree of dependence and the expansion of social participation and access to social support networks.

We emphasize that the actions, resources and technologies employed by the occupational therapy team in conducting the group were in line with the objectives of the Coexistence and Strengthening of Bonds Service and with the principles of the Unified Social Assistance System. Thus, we believe that this study can guide the professional reasoning of other occupational therapists in the social assistance follow-up of women who are informal caregivers of people with intellectual disabilities.

A limiting factor of this study is the lack of participation of other family members in the proposed activities. In future interventions, the aim is to include other members of the family nucleus, mainly males, who, because of cultural gender stereotypes, generally omit their participation in caring for the disabled family member, as well as in the domestic environment, being a significant factor in the overload of daily tasks of informal caregivers of people with intellectual disabilities.

• 1
  This study was approved by the Human Research Ethics Committee (Opinion No 3.775.581).
• 2
  Misogyny is a concept that encompasses feelings of hatred, contempt, prejudice, disgust, and aversion to women and what refers to femininity. It is understood that misogyny can manifest itself in different ways, such as through objectification, depreciation, discredit, and various types of violence against women.
• 3
  Intersectionality can be understood as the interaction between two or more social factor that define a person. Identity issues such as gender, ethnicity, race, disability, sexuality, geographic location or even age do not affect a person separately.
• How to cite: Gomes, C. M. S., Schiavo, K. V., Nascimento, A. P. C., & Macedo, M. D. C. (2023). Meeting of powerful women: social occupational therapy intervention strategy with informal caregivers of people with intellectual disabilities. Cadernos Brasileiros de Terapia Ocupacional, 31(spe), e3402. https://doi.org/10.1590/2526-8910.ctoAO260834022

• Funding Source

  Associação de Pais e Amigos dos Excepcionais of Vitória - ES.

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Edited by

Guest Editor

Profa. Dra. Rosângela Gomes da Mota de Souza

Publication Dates

• Publication in this collection
  10 July 2023
• Date of issue
  2023

History

• Received
  11 Aug 2022
• Reviewed
  19 Aug 2022
• Reviewed
  31 Jan 2023
• Accepted
  10 Mar 2023